Journal History
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Friday, December 28, 2007 5:33 PM CST
I don’t remember whether or not I wrote about getting the Wii back from Nintendo. We did indeed get back the Wii system, and I can tell you unequivocally that the game system has become our oxygen. We need to “breathe” it in every single day.
Zachary has had all sorts of game systems over the years, and I have never really gotten into any of them to the point where I would look forward to playing games. The Wii system is different. I was actually disappointed when I realized that all of our records were lost when the mother board was replaced at Nintendo. I had written down most of our records, but it is nice when the machine recognizes you when you sign on and informs you as to your accomplishments as you achieve them.
Since getting the system back, Zachary and I have found our niche in the bowling game. We were able to quickly locate the “sweet” spot for lining up our shots and we started to bowl over 200 almost every game. Then, I had a game where I bowled a spare on the first frame, and then I got strikes on the rest of the game. A nice 290! About two days later Zachary and I were playing against each other, and I bowled back to back 300 games! Now, anything below 250 is a disappointment to me. It infuriates him that I am better, but he kicks my butt at real bowling, so it’s all good.
I have also mastered the Wii golf. There is a practice area where you can practice chipping the ball towards the green. The practice takes you through 10 holes. If you land on the green, the distance from your ball to the hole is measured for you, and then added up over the course of the ten holes. The object being to have the shortest total distance after completing all ten holes. If you land in the rough or even on the fringe, they give you a default distance of 100 ft. My best score after ten holes is 66.1 ft. That may not seem like a good score, but do the math. That’s just over 6 ft. per hole. I challenge anyone out there in Wii land to match or beat that score. On the regular Wii golf game, I have a -6 under par for the 9-hole course that is included with the game. Once again, that’s a pretty good score.
When it comes to the Carnival games, Rebecca pretty much rules the roost. That one was a gift to her, and she loves the carnival games. Zachary has his Super Mario Galaxy and DragonBallZ. For Christmas I bought him the Guitar Hero III for the Wii, which he really wanted. If you haven’t played one of the Guitar Hero games, they are pretty cool, and VERY challenging. He has gotten into it big time and is working to advance through the levels. The funny thing about Guitar Hero is that it is introducing a whole new generation of kids to the music that we (35 – 55 year olds) older folks grew up with. And he actually LIKES a lot of the music, which is amazing, because when I have tried to play that stuff in the car, he has always complained in the past. Now he’s like, “Hey, I know that song!”
There’s not a whole lot else going on here. I’ve been playing in 9-ball tournaments on Saturday nights when I can get out. I’ve played in three. I won once and took third and fourth in the other two. It’s a relaxing distraction for me.
Zachary’s medical issues seem to have calmed down somewhat. (Kaynahorah, ptuii, ptuii, ptuii.) The drug that we give him for neuropathic pain seems to be doing its thing and keeping him pain-free. His hip has also healed up from falling while bowling. So, hopefully we’ll get to enjoy some peace and quiet on that front for awhile.
Scott
P.S. We just finished dinner and we’re all hankering for some Cold Stone Creamery, so bye for now!
Monday, December 24, 2007 1:46 PM CST
HAPPY HOLIDAYS!
GOOD WILL TOWARDS MEN!
CHEER, CHEER, CHEER!
BLAH, BLAH, BLAH.
There you go; I hope you have enjoyed your holiday update.
OK, that wouldn’t be very nice of me.
Zachary’s pain issues have changed.
I use the word ‘changed’ because we are in uncharted waters yet again. His original side pain from over a month ago seems to have been resolved. The newer back pain also seems to be gone. We have taken Zachary off of the morphine, and we haven’t had any problems since doing that 5 days ago. (Kaynahorah, ptuii, ptuii, ptuii.)
Zachary has been seeing his psychiatrist and his psychologist a lot lately. There are hoards of unresolved issues floating around in that head of his that have been festering for quite some time.
Between the life and death thoughts and the pain issues, he has a lot of confusion and uncertainty that are making it difficult for him to enjoy the mostly ‘high’ quality of life that we have. (Once again, I am comparing his quality of life to those that are constantly in-patient, or worse, dead. I am NOT comparing his quality of life to children that have never had to face such a disease or illness.)
The old cliché for our position is: “Take it one day at a time.”
Now, we have more or less lived that way for almost 8 years, BUT, you really don’t live ONE day at a time. There are always days, or weeks or months that you string together in your head because of treatment plans, testing schedules, trips, or school or whatever. Now, I find myself literally looking to get through ONE day without a major problem or medical development. I find myself at night, wanting to go to sleep with the knowledge that he will be OK until morning and that nothing bad will happen during the night. This is a most unsettling mindset that I have not experienced in many years. Probably back during transplant, there were thoughts like this, and that was a much more dire medical scenario. Now, we find ourselves facing unknown demons that do not show up on scans or in blood tests. We find ourselves praying for more than a cure. We are also praying for peace in his mind, so that he can get the most out of life.
Zachary’s newest pain issue is his left hip. He says that he fell while bowling the other day, and ever since, he has been limping and in pain. We are treating it with Tylenol and Ibuprofen so that we can avoid the morphine.
Hopefully this new pain will resolve itself quickly.
Scott
Monday, December 17, 2007 8:33 AM CST
Apparently, Zachary’s pain issues are inversely proportional to what I write about in the journal updates. In other words, I wrote the other day that we upped the dosage on the medicine, and the pain issues went away, and then over the weekend, he had an attack on Saturday, and then yesterday he had another one at dinner time. He was playing on his computer and we heard a crash. We ran in the room to find him sprawled on the floor, passed out. We were able to turn him over and wake him fairly quickly, but once again we had the crap scared out of us.
Zachary says the pain is so intense; he can’t breathe while it is happening.
So, I am torn with this whole journal thing. I like updating everyone, especially when there is good news; however, if every time I write something good, something bad is going to happen, then I’m done!
I may be a slow learner, but I DO learn eventually!
I emailed our Philly doctor last night with an update, and I just got off of the phone with our case manager there in Philly, so hopefully I will hear back from them shortly as to what they want us to do. I am willing to hop on a plane with Zachary and let him become their guinea pig if that’s what it is going to take to resolve this bizarre issue.
If we leave, I will let you all know, but until I can be shown otherwise, I am operating under the assumption that the computer/internet are evil and possessed and need to be used with extreme caution.
Scott
P.S. The only reason that I seem paranoid is because everyone is out to get me.
Sunday, December 16, 2007 10:57 AM CST
Well, we met with our local oncologist and she came up with a very plausible theory as to why Zachary has been passing out when having the pain attacks. He has been holding his breath. (When asked if he was indeed holding his breath, Zachary admitted that he was, in an attempt to not move any muscles or positioning to where the pain would get worse.) This explanation actually “fits” very well. It explains why, after passing out, he is never in any real “distress”, medically. His breathing returns to normal, his pulse is fine, he doesn’t get clammy or cold, as if he were in shock, he just stays non-responsive for about 2 minutes and scares the crap out of us.
We have educated him as to the importance of breathing, always! The good news is that after two days of pain episodes, we put him back on the morphine twice daily and he hasn’t had one problem since. The bad news is that he is on morphine twice daily (around the clock). So, we will need to try and find an alternative to narcotic pain control. There is also the remaining concern about having a pain issue that is still unresolved.
Other than that, everything is just hunky dory here in Florida!
The state lottery was up to over $30 million last night, we didn’t win. (And I was soooo sure that we had good odds of winning, what with the five quick picks that we purchased. I mean, that gave us five whole chances. How many number combinations could there possibly be?)
Billions
Oh well.
Scott
Friday, December 14, 2007 8:21 AM CST
Just when you think that things are calming down and somewhat under control, you get a rude awakening. You know that feeling you get when you’ve slept really well the night before, and you’re just about to wake up, sort of half in and half out of consciousness? You start to move around but you haven’t opened your eyes yet, and you’re just about to do that, so that you can get out of bed, AND THEN SOMEONE THROWS A BUCKET OF ICE COLD WATER ON YOU!
That is how I feel.
Zachary has been on the morphine pills for a month now. He takes one at night and one in the morning. They are 12 hour time release pills. Since starting this medicine while in-patient, he has had only one episode of pain. That is the good news. At the beginning of the week, the pills were running out. We knew that eventually we were going to have to try and wean him off of the drug to see if the pain issues had resolved themselves. Also, you can’t keep the narcotics going forever. We contacted our doctor, and she wrote a new script, but for only one pill/day. We agreed that by dropping the dose to one pill/day, we would find out where we stood. Because he is most active during the day, we opted to keep him on the daytime dose.
Unfortunately, the first day after starting this new routine, he had a pain attack. (For those doubting Thomases’s out there that think maybe it was in his mind, knowing that he stopped taking the pill, Zachary is on a lot of medicines. He takes several in the morning, and in the evening. He swallows them all at once, and doesn’t know which pill is for what. I know this, because there have been times when I have asked him if he has taken a medicine, and he always answers that he doesn’t know. If it wasn’t in his pill cup, he didn’t take it.) The second day on that schedule was worse. He had a few more attacks, but they came with a new twist. About 2 minutes into the attacks, he slumps over and passes out. Now, before you start yelling at us for not rushing him to the E.R., let me explain further. At no time during these episodes does he appear to be in any real distress. His breathing remained normal; he did not become clammy or cold. The first two times that this happened, we tickled him to see if he was playing around, and didn’t budge. After about two minutes, he wakes up. I asked him last night after one of these episodes, “What are you feeling?” He says that he feels a “Crushing pain in my spine, and then I don’t remember after that.”
We have an appointment today to see our local doctor, but once again we are dealing with an episode that comes and goes without notice. We started him back on his night dose of morphine last night, so we’re hoping that he won’t have any problems today.
I am beginning to wonder if whatever was happening a month ago may have gotten worse, but possibly the morphine has been masking the pain, so we haven’t been seeing the results of that pain. We also are wondering if the pain is causing him to pass out, as a defense mechanism. He is not complaining. He is adamant that he does NOT want to go to the hospital. Basically, this sucks!
I feel like we are back to square one. Actually, I feel like we were sent back to square one, only to have found that it has been moved/destroyed/recalled, and we are stuck wondering around aimlessly in search of a square that no longer exists.
It sucks!
It sucks a lot!
Cancer Sucks! (Hmmm. That’s a catchy phrase; I should do something with it.)
Scott
Thursday, December 6, 2007 7:27 AM CST
WOW!
I write what is quite possibly the most controversial update, and I get 1 post in the guest book. Hmmm. I’m guessing that either there are a whole bunch of leery non-believers out there that are worried they are getting sucked into another one of my famous fake stories, OR, people are just to shocked by the information to respond. Either way, oh well. I tried.
Things here at ground zero are somewhat stable. Zachary is still requiring huge amounts of sleep. For the most part, he is feeling pretty good during the day. We ended up taking him out of school and moving him into the hospital home bound program. The only difference now is that he will be getting a few hours of in home instruction with a teacher, instead of relying on his parents to educate him. The school work is still provided by his teachers, so that hasn’t changed. He has already had two sessions with the teacher, and it is going very well.
Other than that, all is quiet on the Western Front.
Scott
Wednesday, November 28, 2007 2:32 PM CST
I hope that everyone had a safe and enjoyable holiday!
Zachary had a wonderful time visiting with his cousins. His energy level is still greatly diminished, but he made the most of it by staying active when he had the energy. My folks treated all of the kids to an air boat ride on Lake Garcia in Vero Beach. It is a swampy area that has a ton of wildlife including lots of gators, birds, turtles, etc. We saw some gators that were over 10’ long!
Zachary’s checkup yesterday went well. His counts are strong, so we’re not too concerned about the stuffy nose that he has had for a few days. He did have some of the mysterious side pain yesterday for the first time since starting on the morphine, so that was a little bit upsetting, but the episodes didn’t last long, so hopefully that trend will not continue.
As I get older, my memory is starting to fail me. Some of you “old timers” to this page probably remember better than I do, but I’m thinking that I once did a whole journal entry on:
“You know you’re the parent of a child with cancer when…”
I can’t remember, and I certainly don’t have the patience to go back and research all of my journal entries, but regardless, I’ve got a new one.
“You know you’re child has been fighting cancer for way too long, when you can be sitting at the dinner table, enjoying spaghetti & meatballs with bright red tomato sauce while discussing the blood that has been showing up on your child’s toilet paper when he poops.”
(That exam showed nothing of interest, hopefully that condition will go away, quickly!)
The other semi-new Zachary quirk is that he is requiring about 11-12 hours of sleep at night. This fact seems to bolster the theory that he is in the midst of a teenage puberty/growth spurt. We’re also hoping that it is the cause of the mystery pain. (Because if it is, eventually he will stop growing, thus the pain should stop.)
[Everything written above this line was entered yesterday. (Tuesday) I didn’t get a chance to finish the journal entry until today (Wednesday), so if you’re wondering why my thoughts seem to be jumbled, that would be the reason.]
[THE FOLLOWING COMMENTS AND STORIES ARE ENTIRELY MY RECOLLECTIONS OF EVENTS THAT I HAVE EITHER READ ABOUT OR WITNESSED. I WAS NOT COACHED, PRODDED, ENCOURAGED, OR IN ANY OTHER WAY ASKED TO RELAY THESE COMMENTS IN ANY PARTICULAR STYLE OR FASHION.]
This morning I spent about 4 hours in Miami at the Federal Justice Bldg. It was our long awaited oral arguments in front of the three-judge panel for the 11th circuit appeals court. If you have not been following this aspect of the Finestone drama, I’m not sure where to send you to catch up. I’m not entirely sure that I’ve written in detail about what has happened over the past several years. In a nutshell, we started working with a major law firm back in 2000 after reading about research being done into the radiation levels being found in baby teeth for children that grew up around nuclear power plants. Over the course of several years, our attorneys were able to uncover an episode from 1982 where the plant had incorrectly plumbed a sink, and subsequently allowed radioactive materials to leave the plant unmonitored. At some point during the discovery phase, our attorneys were approached by two different law firms that asked to join the suit, to offer their expertise in areas that we would eventually need help with. So, we have three different firms contributing their efforts to this case. In the months leading up to our proposed trial, our attorneys uncovered documents that the power company had failed to produce showing that not only had they dumped materials off site that were “dirty”, they had not disclosed this to our attorneys as ordered by the judge. The judge ended up issuing what is called an “adverse inference.” This is basically like a flag on the play in football. The “AI” was supposed to have been read to the jury, informing them of the actions of the power company. Unfortunately, during the Daubert hearings. (Used to allow/disallow expert testimony), the judge gave the power company a summary judgment. Basically, we were being penalized because the power company had not fully disclosed what it was ordered to, and that resulted in our experts having to render opinions having NOT been given all of the data and information that they were supposed to have received. After that debacle, our attorneys filed an appeal, which has been with the 11th circuit for almost a year. Today was our oral arguments in that case. We are appealing the lower judge’s summary judgment, saying basically that he acted inappropriately by dismissing the case. We are asserting that a jury should be allowed to hear the arguments, and that our experts should be allowed to testify.
For those of you that are not familiar with appellate court, both sides are given 15 minutes to make their argument. The appealing side goes first, then the defending side. The appealing side has the option to “bank” some of their 15 minutes to use in response to the other side’s comments. But, they must make that decision ahead of time. Our attorneys wisely banked about 5 of the 15 minutes. The three judges were very impressive. I was happy to see that they had a fairly large knowledge of the case. (Ours was the fourth and last case of the morning.) They asked some great questions, and brought up some wonderful points. Having said that though, there is no way to predict as to how they will rule. My understanding is that at least 2 of the 3 judges needs to agree with us for us to move forward to trial. They are not limited in their time to make a decision; however, I am told that 3 to 6 months would not be uncommon.
A couple of the stronger points that I thought were brought up revolved around the 1200 pages of missing documents from the power company. The attorney for the power company admitted to the three judges that the 1200 documents were never found or delivered to our attorneys. He also added that the documents would have been 23 years old when they were requested, and “that is a long time for anyone to retain or manage records.”
That comment was a mistake.
When our attorney was using her response time, she was asked by one of the judges who seemed to have confused those documents with other documents that we eventually found on our own, “So you DID get the missing documents?” She said.
Our attorney replied, “No your Honor, we never received the missing 1200 pages from the three days immediately following this incident back in 1982, AND, the power company is federally mandated to retain those records for the entire time the plant is in operation.” (And yes, the plant is still open.)
So, they can produce their documents and reports for the entire history of the plant, with the exception of the 1200 pages referencing the three days that followed the leak. Hmmmmmmm. Curious, isn’t it?
I was also told today that only about 10% of appeals cased are granted oral arguments. So, that was encouraging, the fact that these judges had read enough into the file to prompt them to allow us the chance to present these arguments orally.
Once again we play the waiting game. But, we have waited patiently for over 6 years, so another 6 months or so is no big deal.
By the way, whichever way this ends up, the next step for either side, is the Supreme Court of the United States.
For more information on the original suit, you can Google “Zachary Finestone”. I know that when the case was filed, there were stories written in about 20 or 30 different countries, so they should be easy to find. Also, remember, not every aspect of the case has been reported. A lot of what was written is very one-sided.
Scott
Thursday, November 22, 2007 9:20 AM CST
Happy Thanksgiving everyone!
Not too much to report from here. We are up in Vero Beach spending the holiday with my folks, my two brothers and their families, and my cousins from Atlanta.
We are also celebrating my parent’s 50th wedding anniversary!
Zachary is still on the morphine and not having pain. We see our local oncologist next week, so we will probably try to reduce the daytime dose of the morphine to see if we can start to wean him off of the narcotics.
Zachary is having a blast with his cousins, so all is well in the world. He has only had one meltdown while we have been here. The day we arrived, he was playing with his new Wii system, practicing up before his cousins arrived, and it stopped working. The power comes on, but no audio or video shows up??? We called Nintendo, and they said to ship it back for repair. That will take anywhere from a week to ten days. Oh well, no Wii for this Thanksgiving.
I’ll be frying up two turkeys here in a couple of hours. If you’ve never had fried turkey, then I feel sorry for you, you are surely missing out on one of God’s great gifts to mankind. Enjoy your day, eat plenty, travel safe, and don’t forget to say a small prayer for the Wii system.
Scott
Friday, November 16, 2007 8:14 AM CST
We are back from Philly. Actually, we got home late Wednesday night. And, I know that I should have updated on Thursday to let all of you know what we learned, but I decided to punish all of you for one day!
And what have you done to deserve this punishment?
Nothing.
But, then again, what did I do to deserve sitting at that airport again while my flight was delayed for over 3 hours, AGAIN?
Nothing.
So, I figured that I if was going to suffer, then I would make all of you suffer as well. It seemed like the ‘right’ thing to do, don’t you think?
Maybe not. Maybe you feel it was a childish, adolescent & immature thing to do. But then again, we’re talking about ME, so using words like ‘childish’, ‘adolescent’, & ‘immature’ is nothing new or groundbreaking.
Back to Philly. (Not literally, just in the update sense.)
Because we had done the MIBG scan last week here in Florida, Philly only wanted us to do our usual echo of the heart. That, along with blood work and the normal clinic check up was all that we needed. They had received the disk of scans from our local hospital, and they had their experts review them all, very carefully.
The MRI and CAT scan images were very clear and of excellent quality. Our Philly doctors see nothing suspicious anywhere in those images. They do NOT believe that there is a micro fracture on the spine. All of the bone damage seen in the spine is “old” damage from early on in his diagnosis. There is no smoking gun anywhere to be found. It is possible that he is growing quicker than normal, (growing pains) and that he is experiencing some sort of pain related to the growth. There was actually a guest book entry that mentioned this as a possibility a week or so ago. According to our doctor, children that have undergone extensive treatments like Zachary are more likely to hit the heavy puberty growth earlier than healthy kids. I do not know why. He has gained more weight; he is now up to 123lbs. As for the bone damage and loss in the spine from the cancer, the only suggestion was to have him start taking vitamin D and calcium, to help prevent further damage.
For some reason, Zachary presented in clinic with a low grade fever, 99.8. He has not had a fever in quite some time. His ANC was also a bit low, 1000. Maybe it was coincidental, maybe not, but we ran out of Chaga (the supplement we are using to boost his immune system) again. We got low, and had enough for a few drops, but not the normal amount. When we got home on Wednesday evening, our replacement bottles had arrived. By Thursday morning, he no longer had any fever. Coincidence? Maybe. Whatever works, that is my motto!
Overall, the doctor put no restrictions on Zachary physically. There was nothing in the scans to indicate that he was at risk for imminent damage. (More on this later.) The MIBG scan was not as “high quality” as the MRI and CAT scans. I don’t know what makes a “good” or “Bad” MIBG scan, but they were willing to say that they felt he was at least stable still, based on that scan. Some of the disease that usually shows up on their MIBG scan was not indicated on the one from Florida. This does not mean that the disease has vanished. Zachary’s usual hot spot was there, so they know that he did get some of the uptake from the isotope. So, they won’t go out on a limb and say that he has had huge amounts of improvement, but they will say that he is stable. We return to Philly in January, so we will have another scan at that time.
One of the big questions that we had for the doctor there was whether or not Zachary would be cleared to go on his 8th grade trip to Islands of Adventure (today). His friends are all going, and he had been looking forward to this for quite some time. We were concerned about the back issues, and whether or not it was a good idea for him to be riding those crazy roller coasters and risking injury. When Zachary first asked the doctor, she said there were no restrictions. BUT, a light bulb went off in my head. I had a hunch that our Philly doctor didn’t fully appreciate what kind of place Islands of Adventure really is. When I informed her that most of the rides there are wild, coasters where you get thrown around like play toy in the mouth of a rabid Rottweiler, she suggested that maybe Zachary should limit his day there to the more tame rides.
I know Zachary pretty well. Actually, I know him VERY well. And knowing that he was wanting to hang out with a certain group of kids that included a girl that he likes, I knew that it was going to be a bad scene when Rebecca had to tell him “no”, every time that he tried to get on a ride with his friends. Also, there was the fatigue factor from walking around the huge park all day. Zachary has been in and out of the hospital for a couple of weeks. Prior to that, he was inactive because of the mystery pain. So, he really is not in any condition to be walking around a park like that all day.
Knowing all of that put me back into my problem solving mind set.
Problem: How do you convince a 13 year old boy that he should not spend the day with his friends, and a girl that he likes, at an amazing amusement park?
Solution: Offer him something that he wants more (or just as much) in a bribe attempt to get him to opt out of the park day.
I should have been a hostage negotiator or something.
It was really quite simple. We just bought the new Wii system. There is a game (Mario Galaxy) that Zachary wants REALLY badly. We had told him that he could have it for Christmas. He knows that we bought it already, because it went on sale this week where it included a $25.00 gift card to Toys R US. Also, when we bought some accessories the other day, we received a $10.00 gift card to Toys R Us.
So, here was the pitch:
Give up the day at Islands of Adventure, and we will give you the Mario game for the Wii now, so that you don’t have to wait until the holidays. AND, we will give you BOTH gift cards for Toys R US so that you can get something else RIGHT NOW.
Putting money (or gift cards) into the hands of a teenager is like putting Jell-O into the hands of a 2 year old. It might stay there for a few moments, but in the end, it will be somewhere else in a short amount of time. He claims that it took him all night to decide, but I know that it was too much of an enticement for him to pass up. In the end, he tried to make it seem like he was making the adult decision, based on how tired he got while walking around Philly, and knowing that he would be tired at the park. (That was the other seed that I had planted. Telling him how much he would NOT enjoy the day if he was tired and miserable.) He wisely chose the game and gift cards.
Another explosive situation diffused by the cunning of a master negotiator. (In other words, I used the secret weapon that I possess, the mind of a teenager! Yeah, I never grew up, go figure!)
So, Zachary remains on his time release morphine pill. Our doctor said that when we are ready to try and wean him off it, we can cut back on the daytime dose to see if it still manages the pain, while reducing the side effects. If that works, then we could cut back on the nighttime dose, and eventually, hopefully, get him off the pain meds altogether.
Scott
P.S. The flight delay story will be saved for another journal entry. I need to run. Remind me though.
Monday, November 12, 2007 3:54 PM CST
OK, Rebecca tells me that I am overdue for an update again. “We’ve been home since Friday and everyone deserves to know what is going on.”
Well. We have indeed been home since Friday. The hospital released us on the 12 hour time release morphine pill. They also gave us a prescription for the T.E.N.S. unit which I subsequently ordered online. We are waiting for it to arrive. Over the weekend, Zachary’s pain stayed pretty much in check with the new pill. Today was the first day that we had an attack since leaving the hospital. Zachary slept in about an hour or so past when he was due for the pill, and after waking up, he stretched, rolled over, and then was writhing in pain for about 2 minutes. Since taking the pill he has not had another attack, so either the morphine time release is working, or this whole thing is in his head. (I’m doubting that last theory, seeing as he doesn’t pay attention to when he is getting medicines.)
Zachary and I leave tomorrow for Philly. Hopefully we will only be there for one night, however, if it means finding answers to our mystery pain, then we will stay longer as needed. The only test (other than blood, weight, temp., etc.) that we have to do up there is an echo of the heart. (Standard procedure on this protocol.) So, Wednesday morning we will get the echo, and then we will see his doctor. After that, we will be flying home. We remain hopeful that the doctors there will see something enlightening on the scans or during his physical examination that will help us to find an answer.
As for the morphine pill, it is doing its thing, blocking pain. That is the good news. The bad news is that we have noticed some minor changes in Zachary’s demeanor since starting on it. He is slightly “off.” Not in a bad, or horrible way, but we do notice that he is slightly changed by this narcotic. We are somewhat worried as to what the long term effects of staying on this drug are, but we really don’t seem to have an option right now. We need to control his pain. We need to give him relief from this torture.
I do have an unrelated medical (sort of) story from this weekend. Friends of ours were in visiting on Saturday and Sunday. Tom, our friend from Boggy Creek who was Zachary’s original family pal way back in 2000, came over to visit with his girlfriend Katie. They spent the night Saturday and then left to go and watch the Miami Dolphins lose their 9th straight game of the season. (I may live in Florida, but I have NO love for the Dolphins. I grew up in Pittsburgh where winning games and Super Bowls was an ordinary occurrence.) We went out Saturday night for a nice dinner, and then came home to play on Zachary’s new Wii game system.
If you have not played on one of these, they are a blast. I have gotten very bored and uninterested in video games over the past several years. It seems as though if you don’t know the sequence of buttons to push, (X, O, triangle, A, B, etc.) then you don’t get anywhere in the newer games. The Wii system is different. They have come up with a great “equalizer” in video gaming. For instance. Zachary and his friend Brandyn are great bowlers. In real life, Zachary has a 200 game, and Brandyn has bowled a 256. They also play fairly well on the Wii. Rebecca had never touched a Wii controller before, and last night, she bowled a 193 on her first try, and beat both of the boys. Golf, bowling, pool, shooting, tennis, ping pong, air hockey, etc., the games are all great. The controller makes you feel like you are more a part of the action.
So anyway, we were playing Wii Saturday evening and having a blast. Sunday morning, I had promised to get donuts and coffee for our guests. There is a Duncan Donuts not far from the house. So at about 8am, I headed out to pick up breakfast. While I was waiting in line, I noticed that they had chocolate milk in their refrigerator display. Zachary and I love chocolate milk, so I picked up two of those to go along with the donuts and coffee for our guests. I got home, and everyone started to much away on the donuts. I opened my chocolate milk, and chugged down a big gulp.
I immediately knew something was wrong. The taste wasn’t quite right. I looked at the label and realized that I had selected the 1% milk. This was a good thing. With my former cholesterol history, lower fat milk is a good thing. But I’ve had 1% milk before, and it doesn’t taste anywhere near as bad as this tasted. So, being the highly paranoid milk person that I have ALWAYS been. (Up until this past weekend that is.) I looked at the label on the lid where it gives the “Use by date.”
Now, as I said, I am ALWAYS hugely paranoid about milk dates. I ALWAYS smell an open milk container before pouring some into a glass. Nothing is more nauseating than sour milk. Right?
The date on the lid was October 18th. The day I was drinking it was November 11th. You do the math. I immediately ran to the refrigerator and poured a glass of milk from the gallon that we hadn’t opened, added some chocolate syrup, and drank it down. (All in an attempt to offset the bad karma that my stomach was enduring from the swig of sour milk that I had just ingested.) After attempting to correct that great injustice to my body, I emptied the two small milk containers into the sink. I think that I may have aged about 6 or 7 years as I watched the CHUNKS of sour milk plopping out of the containers into my sink. The entire time, all I could think about was the HUGE gulp of rotten milk that was now festering in my belly.
Thankfully, I never got sick from it. I did however spend most of the day holding my stomach and wondering if I was going to be praying to a porcelain god anytime soon.
Scott
P.S. Check those expiration dates before drinking!!!
Thursday, November 8, 2007 6:38 PM CST
Things definitely got worse, before they got better.
Tuesday was a bad day. I had to go north to Vero Beach (about an hour away) to check out a job site, so Rebecca took Zachary to work with her. While there, Zachary was experiencing about 3 of his 2-4 minute long attacks every hour. He was resting in the pro shop, and he would call Rebecca on her cell phone to let her know that he was having the pain. She called me and we agreed that he needed to be in the hospital to somehow get the pain under control. So they packed some clothes (assuming they were going to get admitted) and headed down to the E.R. where they were waiting for him. On the way down, Rebecca got the bright idea to record a video on her cell phone of one of Zachary’s attacks, so that we would have something to show them if he didn’t present with the symptoms that we were seeing. As it turned out, it wasn’t necessary. Once in the E.R., Zachary’s pain obliged and he had a pain attack in front of his nurse. The doctor was brought in, shown the video, and informed by the nurse as to what had happened, so they ordered I.V. Dilaudid. If you are not familiar with this drug, it is a narcotic pain med. Zachary has never had it before. From what we have heard, the normal dose for a person of his size is 1 – 4 mg. To be safe, they started with .5mg. I wasn’t there, but apparently, instead of adding it to the I.V. to drip in over 10 or 15 minutes, the nurse injected it right into his I.V. line. He immediately slumped over and was paralyzed. He could not feel any part of his body, or move any part of his body. His tongue would not work either. Thankfully, he did not stop breathing. Regardless, it freaked Rebecca out completely. And, to be fair, she called me and freaked me out completely. As for Zachary, well, he was out of pain, but completely immobile. He could not feel tickling, touch of any kind, and he could not move a muscle in his body. By the time that I got to the hospital, they had transferred him up to the floor. They needed 4 people to transfer him from the E.R. bed to his bed. He could not help whatsoever. When I got there, he was asking me to hold his hand, and he could not feel it. His speech was barely understandable, because of his tongue. I could sense that he was scared and upset. It was one of the most terrifying experiences that I have endured with his disease. Certainly his bone marrow transplant would rank up there for scary moments. You may remember the 10 or so hour ordeal that we had after his bad reaction to Reglan. (Or you may NOT remember. You could always go back and see if I ever wrote about that. It happened in 2000. I didn’t start journaling until May of 2002, but I believe that I have written about that episode before.)
So anyway, after about 4 hours, he started to regain some minor movement in his fingers. His speech slowly improved, and by the 4 ½ hour mark he was almost completely recovered. The lesson of the day was that Zachary is hyper-sensitive to Dilaudid! The doctor was consulted, and the decision was made to switch to Morphine. There was some discussion as to whether it should be given over a 15 minute or so drip, or if he should have a PCA. (Where he could push the button when he needed it and then it would come through the I.V.) Unfortunately, his night nurse on Tuesday never got around to hooking him up. Zachary and I were beyond tired. We were emotionally and physically drained. We passed out shortly after 10pm after hearing from the nurse that the Morphine was coming. During the night, Zachary never woke me up. I heard the nurse and aide come in a few times to check vitals, but I never heard anything else. In the morning, I woke up around 7am, and I immediately noticed that he was NOT hooked up to the I.V. The nurses were changing shifts, so I waited for our day nurse to come in. When she did arrive, we were lucky that it was one of our original nurses from when he was first diagnosed. She got right on the Morphine thing and within 15 minutes or so, she was getting him set up to receive the pain med. He told us that during the night he had about 3 episodes of 2-3 minute long pain attacks. He did not want to disturb me, and he didn’t call the nurse. She says that she never got him the Morphine because he never complained of pain. (Miscommunication I guess. I thought he was scheduled for the pain medicine regardless, I guess not.)
So, as our nurse was getting ready to hook him up, he had another attack. So she got to witness it as well. Once he was on the Morphine, he did much better. He made it 4 hours without any pain. Then we re-upped on the Morphine, and went down for the MIBG scan. He was able to stay still, and he didn’t have any pain for another 2 ½ hours, after we got back from the scan. By then, it wasn’t as bad, so we were confident that the Morphine was helping. They kept him on that all day, until the pain doctor showed up. He recommended switching to a time release Morphine pill that lasts for 12 hours. This sounded like a good idea. If they were able to control the pain with a pill, then he could go home, and we could move forward from there. The pill got him through the night with only one small pain attack. Today, he did pretty well too. He is having some itching from the drug, which is a known side-effect. Hopefully it will not last long, because we need a pain medicine that will keep him comfortable without turning him into a Zombie.
The other thing that they ordered is a T.E.N.S. unit. (Transcutaneous Electronic Nerve Stimulator.) Unfortunately, they have not found one yet. I do not know why that can’t find one. I looked online just now and found them for $34.00. It is now 7pm and I am doubtful that one will show up tonight. I was hoping to get him hooked up to this thing to see if it will give him additional relief from the pain. I have been told that they can be very useful in some patients for blocking the nerves from sending pain messages. Once we get the pain under control, we can take him home. As for answers to our mystery pain, I am not optimistic that we will get answers anytime soon. They have done every scan and test imaginable. We have had consults with every specialist imaginable. We do not have a culprit yet.
As for Philly next week, we made some changes to our travel plans. Because we did the MIBG this week, they do not need us for two days up there next week. They only need us on Wednesday. Because of the uncertainty of his pain issues, and the possibility of extending his stay, I have switched the tickets so that I am going with Zachary. We will fly up on Tuesday and hopefully return on Wednesday. If for some reason they ask us to stay, I will be with him to juggle the logistics of changing plans on the run. Rebecca will be able to work those days, so we will at least have some income coming in.
Rebecca and I are scared, frustrated, tired, exhausted, upset, scared, frustrated, and tired. (I just read that back to myself, either my eyes are getting blurry or I am starting to repeat myself.) Our local doctors have done pretty much everything that they can, and we still don’t have answers. We remain hopeful that our Philly doctors might have some other insights to offer from their years of treating neuroblastoma patients. Our goals remain the same:
1). Control the pain.
2). Diagnose the pain.
3). Cure the problem.
I spent about 2 or 3 hours this morning online, doing homework about bone lesions and cancer. I read several articles regarding how bone lesions form and how the biology of it all works. From there, I started to research pain and remedies. I eventually found my way onto a site that mentioned vertebroplasty. This is a procedure where under conscience sedation; they insert large gauge needles using fluoroscope or CT to guide them. They then inject bone cement, (Paramethoxymethamphetamine) a synthetic material that adheres to bone, to build up and strengthen weakened areas. It can be used along the spine, specifically in patients with cancer that have collapsed vertebrae or fractures. (He may have a micro fracture.) I started to call some of the manufacturers to see if it has ever been done on children. I got transferred around a few times and now I am waiting to hear back from a lab that specializes in that procedure. I asked one of our doctors about this, and basically, I think it is a dead end. We don’t have a definitive fracture, so there is no way that they are going to mess with that area. They need a smoking gun before they can talk about a treatment option.
It was probably an exercise in futility, but it kept my mind moving forward, and it made me feel like I was doing something to help find an answer.
One of our friends called today and asked what we were doing to retain our sanity through all of this. My response was this: “I never had my sanity, so there really never was any real threat of losing it.”
Scott
P.S. The results of the MIBG scan are in. They see uptake in the left femoral head and the left femur. They see no other areas of activity. I do not know if this is accurate, or what it means. His spine ‘should’ be lighting up. That has always been his primary area. They are shipping the images up to our Philly doctor for examination. Hopefully she will be able to make heads or tails of the scans.
Monday, November 5, 2007 9:08 PM CST
Lauren
Wayne
Ed
Donna
Jessica
Brett
Do these names mean anything to you?
No, it is NOT my new coed bowling team.
No, it is not my new coed pool team.
No, I am not putting together a volleyball team.
No, no, no, no, no.
I’ll give you a hint.
If these six people were in a room, with no one else there. And if you were somehow able to electronically scan an image of their collective brains, without harming them of course, (or, go ahead and harm them, either way is good with me), and if, during your scan you were able to somehow measure the number of brain cells that they had, as a group. I promise you. I PROMISE you. You would be hard pressed to find two brain cells to rub together among the six of them.
Having said all of that, I believe that it is now fairly obvious that these folks work for Cigna.
What makes this group of highly polished brainiacs different from all the other ones that I’ve spoken to over the years is that this group was interacted with ALL IN ONE DAY!
It all started with our special oncology support executive. (BULLSHIT). Sorry, I sneezed. I realize that my sneeze may have sounded like I was saying “Bullshit”, but that would be inappropriate. It is purely coincidental that my sneeze sounded like the word “Bullshit.” (Must be chilly in here or something.) Anyways, my day started with an email that I received from her. Basically, I had emailed her with a claim to investigate. I had received a bill from TelDrug, and once again I was confused as to WHY I was receiving a bill, when we meet our out of pocket maximum in January. There is no reason for them to be billing us for anything, this late in the year. I had called Teldrug, (a division of Cigna), and they had given me the information about the claim. I forwarded that information to our special little helper, and she was emailing me back. Her response was that she had spoken with someone named Heidi at Teldrug that had informed her that Zachary Finestone no longer was covered with insurance. His policy had, “Termed.” Sorry, have a nice day! (BULLSHIT). Sorry, must be allergy season or something. I’m allergic to dust, smoke, and imbeciles.
So, not wanting to argue through email, I called Cigna.
Helper #2, (I’m counting our specialist as helper #1) started off the call on a bad note. “I’m sorry Mr. Finestone, you are NOT the policy holder, Zachary is. We will need to speak with Zachary about this issue.” (BULLSHIT). There it goes again. Sorry, again. My bad.
ME: “Umm, Zachary is thirteen years old. He is a cancer patient. He is sitting about 10 feet from me, trying to eat something while he fights an incredibly intense pain that has yet to be diagnosed. How about we SKIP the part where you need to talk to him, especially considering that we’ve been to that dance about 10 times over the past 3 years, and you guys have never learned the steps.” (Silence).
Helper #2, “Umm, OK, I’ll speak with you then.”
ME: [Thinking] (You chose wisely young grasshopper.)
ME: “I am trying to figure out why one of your reps is being told that Zachary’s policy has “Termed.” I am being billed for something from TelDrug, and it should have been covered.”
Helper #2, “This is a pharmacy issue with Teldrug. I will transfer you to them, and they will straighten this out in no time.”
ME: “BULLSHIT” “Excuse me, I sneezed, I will hold while you transfer me.”
Helper #3: “Hi this is clueless Ed, how can I help you Zachary?”
ME: (&%$#@*) “Actually, this is Scott, Zachary’s custodial father. He is only thirteen years old and I need some help on his account.”
Helper #3: “Hmm, I really need to speak with Zachary; his name is on the account.”
ME: (&^#%%@$@) “Thank you for offering to speak to Zachary, but, seeing as how is having another pain attack and is, as I said earlier, only thirteen, you will be speaking with me.”
Helper #3: “Hmm. OK. What is the problem?”
ME: [I outlined the problem.]
Helper #3: “Hmm. I am looking at his account, and I don’t see where there are any charges or outstanding balances due. Everything is coming up zeros.”
ME: “Hmm. That is strange. I got an email message saying that his policy was ‘Termed’ and that he no longer had coverage.”
Helper #3: “Hmm. Let me look. Oh yes. I see now. He does indeed no longer have any coverage for the pharmacy.”
ME: [Deep breath] [Pause] [Another deep breath] “How is that possible?”
Helper #3: “It says here that his policy Termed on 4/30/07.”
ME: “Why? Why did this happen, and why was I not notified?”
Helper #3: “I don’t know, you need to speak with member services, let me transfer you over.”
ME: “Whoa, whoa, whoa. Let us not get ahead of ourselves. I was transferred over from THEM to YOU, to help me fix this.”
Helper #3: “Umm. Well, I just do pharmacy stuff. You need member services. Please hold while I transfer you.”
ME: [%$#@*]
Helper #4: “Hi, this is Donna, how can I help you?”
ME: “Hi Donna, (fill in the rest.)”
Helper #4: “Is Zachary there? I need to verify that I can speak with you on this account?”
ME: (I actually paused here, and started to look around the room for the hidden Candid Cameras.) “NO, Zachary is not available, blah, blah, blah, blah, blah.”
Helper #4: “Oh, sorry about that, no problem. Let us look at your account.” “ I see where the policy did change in May. Your one policy was terminated on 4/30 and the new one was put into effect on 5/1.”
ME: “Why was my policy changed at all? I never received any notification.”
Helper #4: “Hmm. I don’t know. This is a conversion policy that falls under the Florida law requiring us to provide insurance if you are unable to get other insurance. It is still under the conversion policy, but it has changed from a ‘Legacy’ account to a ‘Proclaim’ account.”
“Also, the claim that you are asking about took place during the ‘Legacy’ time of your account, you’ll need to speak to the division that handles those policies. I will transfer you.”
ME: “Before you transfer me, who can explain to me why this change took place?”
Helper #4: “Well, it is run by the state. Let me look for a phone number.” (Pause for station identification.) “Well, the only number that I have comes with a caveat. It says here that the phone number is only active during August, which is when the policies can be changed. Sorry.” “I’ll transfer you now.”
ME: “AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH”
Helper #5: “Hi, this is Jessica, how may I help you?”
ME: (I explained it all over again, only this time without the demand for Zachary to get on the phone.)
Helper #5: “Oh, I am in that division; however, I don’t handle the Legacy accounts. You need a Legacy account specialist.”
ME: “Of course I do. Let me guess. You will transfer me?”
Helper #5: “Yes, I will transfer you.”
Helper #6: “Hi, this is Brett, blah blah blah.”
ME: (What I said before.)
Helper #6: “Hmm. Well, I see where the account did change in May. It looks like you are now on the new Proclaim system.”
ME: “Why the change? Why wasn’t I notified? How can you change my policy without telling me?”
Helper #6: “The other phone reps were confused. This is not a policy change. This is a newer system that is handling these policies now. It would be like upgrading from an older version of Excel to a newer version. You still get the same functions, only with some new features. All of your old information and benefits transferred over. Only, we are having some difficulty in getting the system to recognize all of your out of pocket expenses and co-pay information. We are working on getting that information caught up. It appears as though your troubles MAY be related to that issue.”
ME: “Hmm. YOU THINK???” “While I have you on the phone, how much of Zachary’s $1,000,000.00 lifetime benefit have we used up?”
Helper #6: “Let me see. As of 11/1/07, you have used $402,899.84. But, there is good news.” (This next part is hardly within the realm of belief. Given that we had already spoken at length about Zachary’s cancer, his expensive treatments, how he meets his out of pocket within the first few weeks of each year, you will NOT believe what this guy said the ‘good news’ was.) “Every year that you have renewed your policy for your son, you get an EXTRA $1,000.00 of lifetime benefit.”
ME: “He spends $1,000.00 on medical bills when he doesn’t poop for three days. What am I going to do with $1,000.00?”
Helper #6: “I see your point. I just thought you would like to know that it gets added on.”
ME: “I’ll be sure to celebrate that little tidbit of news as soon as I come down off of my natural high from hearing how we’ve spent almost half of his benefit money already.”
Helper #6: “I will investigate the error we spoke about earlier, and I will call you back when I find something out.”
ME: “Okey Dokey.”
All of that happened today!!!
Although, I do owe Cigna and Teldrug an apology. It hurts me to say it, but I have been unnecessarily harsh on them over the years. I have repeatedly bashed them over their lack of communication, in light of the fact that Cigna owns Teldrug. But today, I learned an interesting fact. There ARE mitigating circumstances relating to WHY there has never been strong communications between the two companies.
Apparently, they DO have the two empty soup cans to speak to each with; however, they have been UNABLE to locate a string that is long enough to stretch between the buildings. So, we can’t really blame them if the technology does NOT exist yet for them to easily speak with each other, now can we?
Medical News:
I already told you that we left the hospital yesterday. Last night was fairly quiet. Today however, was anything BUT quiet.
Zachary seemed early on today to be having more frequent sharp pains. Then, around 11am I was walking by the room where he was online, playing a game, and I noticed that he went through about a minute of sharp pains every 2 to 3 seconds. They kept coming, one right after another. I asked him how long that had been going on, (because that never happened in the hospital the entire time we were there), and he said that during the night it happened a few times. Then, later, I was working with my business partner and I heard a bang from his room. Now, when he is vomiting, he will bang the bath tub so that we know to join him in the bathroom to share in his vomiting experience. So, we went to check on him. He wasn’t in the bathroom, so I opened his bedroom door. He had a cartoon on, his toys on the floor, and he was balled up, in INTENSE pain, clutching his side. He could not even speak, to tell me what was going on. The pain was that intense. I had my friend get the pulse oximeter, to see if he was getting enough oxygen. It came up to around 84 or 85, which is way low. I called the oncologist, (actually, I almost called 911, but he started to move and signal me.) The entire episode lasted about 4 minutes. It scared the crap out of me. I was almost crying, it was killing me to see him in that much pain. The oncologist offered to readmit him, but we never did find a pain medicine to stop those spasms. She was going to have me take him to the local E.R. if he wasn’t breathing properly, but as soon as the pain subsided, he was back to normal. She ordered the anti-viral med used for shingles. (We won’t know from his blood work whether that is the cause, for a couple of days. But at this point, we need to try something.) He had one more attack like that, only not as long, about an hour ago while we were out looking at video games.
I have been scared, and upset many times over the past 7 ½ years, but today was bad. Really bad.
Scott
Sunday, November 4, 2007 3:52 PM CST
Today is Sunday. It is 4:15pm and we have been cleared for discharge from the hospital. Unfortunately, we won’t be leaving for another 2 ½ hours or so. I guess that I am to blame for this screw up.
Rebecca and I have been switching back and forth with who stays at home and who stays with Zachary in the hospital. Our house is a little over an hour from here. We have only one Sunpass. (Small device used to navigate the turnpike toll plazas without having to stop and get a ticket or come up with cash.) So, yesterday, when I was going home, Rebecca gave me her car keys, so that I could get the Sunpass out of her car and then use it on the way home. The thinking at the time was, she wasn’t going to need her car, or keys, until today. I was coming back down today regardless of whether Zachary was getting released or not. Now, when I got home, I didn’t want to leave her car keys in my truck. You know, you don’t want the Boogie Man breaking into your car, grabbing your keys (that have the house one on there,) entering your house, and then terrifying you in the middle of the night. So, fast forward to this morning when I was leaving, and Rebecca didn’t remind me, and I didn’t remember, so the keys to her car on the counter. Now, if it were only the three of us, we would have just left a car here, and dealt with it tomorrow. But, I brought three of Zachary’s friends down with me today to visit. So there are 6 of us here, too many to fit in the truck for the ride of home. So, Rebecca just left with one of the kids to keep her company, and they will drive home, grab the keys, drive back, and then all of us will leave.
So, Zachary is now watching a movie with his other two friends that came down.
Meanwhile, we still have not found an answer to the mystery pain, and we have not found a magic bullet for preventing it. We briefly considered using a Fentanyl patch; however they are not recommended for short lived pain like Zachary’s. We are still scheduled for the MIBG scan on Wednesday, maybe that will turn something up.
I did get a copy of the MRI report. Now, far be it for me to second guess the training and/or expertise of the radiologist or the lingo that they use. But, BUT, Zachary’s report includes a section that describes his spine as having a “Lincoln log” look in sections. I don’t know what this means, but I guess I won’t be surprised when they recommend using play dough or pickup sticks for treatment.
Seriously though, they did mention some stuff that is WAY over my head, which means that it is LIGHT YEARS over all of yours. So let’s just say that bumpy thingy that runs up and down his back has boo boos on it that may be causing his ouchies. (That ought to clear things up for you.)
While I’m thinking about it, thank you to everyone that visited Kyle’s page and signed his guest book. For those of you who did NOT feel that it was necessary to take a few minutes out of your precious schedules to visit and sign the guest book of a little boy who has battled a brain tumor, horrific treatments, a bone marrow transplant, and numerous hospital stays, well then, I guess you’ll just have to live with your conscience and answer for your sins at a later time. If, for some reason, you feel that you deserve a second chance, I will give you the link so that you can ATTEMPT to avoid eternal damnation.
www.caringbridge.org/visit/kylewahl
So, aside from the car key mix-up, I guess today will end well, once we get home!
Scott
Thursday, November 1, 2007 6:30 PM CDT
I guess the good news for everyone chomping at the bit for updates is that whenever we’re in the hospital, I tend to update daily. (In case you live in a vacuum, I updated last night around midnight from Zachary’s hospital room.)
So, here we are, in day #2 of our little drama. We spent the day doing virtually every test you could think of, and while we haven’t found the smoking gun yet, I’m guessing that at the very least we narrowed down the possibilities by eliminating the obvious choices. The theory that is floating around our heads now is that he is experiencing some sort of pinched nerve, or nerve damage, or spinal problem. The pain is now bi-lateral (both sides) evenly distributed in a narrow band. That could indicate that a select nerve bundle is causing the problem. Now comes the hard part, finding out what is triggering the nerves to cause pain.
Zachary has had cancer in his spine since diagnosis back in March of 2000. Bony disease is a tricky thing. When the disease or cancerous cells die, the bone can become weaker. This doesn’t always happen, but anytime that you replace healthy bone with diseased bone; it creates the potential for problems. Now, obviously he has remained quite active over the past seven years. Between soccer, swimming, water-skiing, bowling, running, etc., he has not been hampered by the disease in his spine. So why now? (If indeed that is the problem.) Who knows? It is possible that the disease is spreading, or growing in the bones. Even though we did the MIBG scan three weeks ago, it is not unheard of for this disease to progress that rapidly. You would think that if that were the case, that he would have other symptoms. Specifically, fevers!!! He has always had ‘tumor fevers’ when he has had progression of disease. Thankfully, we are not having that now. Our primary oncologist in Philly wants the MIBG scan repeated A.S.A.P., so we are doing one next week here in town. Meanwhile, he is getting an MRI of the spine (as I type this), to see if anything interesting shows up. I do NOT know what treatment options are out there if indeed he has some sort of nerve pinching or deterioration of the spine that is infringing on a nerve bundle. We’ll just have to cross that bridge if/when we have to.
As for the pain, he did pretty well today. For the most part, he wasn’t flinching too much. The worst of it came when he was doing the pulmonology testing. They had him taking big breaths, and that was torture for him. The tech kept reminding him that he needed to remain still, but it was impossible, with each large breath, he would experience a severe spasm. He got through the test, but his demeanor changed dramatically afterward. Thankfully, when we got back up to his room, one of his best friends, Edwin was there waiting for him, to spend a few hours cheering him up. Edwin kept him occupied for the rest of the afternoon, and that pretty much saved our day.
As for the specialists, the lung doctor has pretty much ruled out any pulmonary issues. The stomach doctor (you’ll notice that I am NOT trying to over impress you with specialty names. Besides, most of you wouldn’t know what I was writing about anyways.) doesn’t believe that there is any relation to the pain and his belly. (He feels the nausea and vomiting could have been related to the medicines that he was on, or a bug.) The pain doctor wasn’t too impressed with the pain levels, but then again, he didn’t ask Zachary to take a deep breath. So overall, we’re not that impressive of a case, other than the fact that they can’t explain his mystery flaming sword that shoots through his ribs every so often.
It is now 7:30pm and Zachary and Rebecca have not yet returned from the MRI. When they get back, I will be running out to get dinner for the two of us. (Zachary is on a bland diet and already ate.) The only saving grace to being here is that we got to visit with two families that we know. One from years ago that was part of our original ‘cast’ on the oncology floor. And the other family we met at a cancer function about a year ago, they are from our area and their young son Kyle is just out of treatment for a brain tumor. This family would have fit right in with our gang that used to roam the halls of St. Mary’s. Having other families to talk with, share stories, and help each other out is an invaluable experience that makes surviving this ordeal possible. Do me a favor and visit Kyle’s web page to let them know that they are not alone, and that there are MANY of you lurkers out there that will add Kyle to their prayer lists.
www.caringbridge.org/visit/kylewahl
That link should get you there. If for some reason it does not, go to the main Caringbridge page (www.caringbridge.org) and in the ‘visit a page’ window, type in ‘kylewahl’. That WILL get you there. And remember, just visiting the page isn’t enough, you’ve GOT to leave a message, (even if it is a short one) to let them know that they are not alone in this.) Thank you for this. You lurkers can be slackers all day long when it comes to me, but you’ve always come through when I’ve asked for your help for others.
Scott
P.S. Don’t despair, I’m sure I’ll be updating tomorrow too.
Wednesday, October 31, 2007 11:29 PM CDT
If you are wondering why this update doesn’t have the “homey” feel that my usual updates have, the reason is that I am typing this update from the hospital.
Zachary’s pain has persisted for a week now. His vomitting over the past two days has also persisted. We made the decision with the doctor to admit him and run a battery of tests to try and finally get to the bottom of this mystery pain.
Nothing comes easy with this disease or lifestyle. If he were not a cancer patient, I am quite sure the pediatrician would label us as “paranoid” over-protective parents. But the fact of the matter is, we cannot escape our diagnosis, and we can’t dismiss symptoms that could be potentially life changing for us.
Our doctor in Philly agrees. She has always conveyed to us a desire to avoid pain and to maintain quality of life. She, along with our local doctor are working together proactively to help us find answers. We started tonight with the usual: Blood work, urine sample, EKG, temp, blood pressure, height, weight, chest x-ray, and CT Scan. It is now 10:30pm, and Zachary and I are finally eating some dinner. I am hoping that he will be able to keep it down, and not have anymore vomitting problems.
Tonight they will be giving him IV morphine to try and keep these mystery pains at bay. Tomorrow, we will be seen by a variety of specialists that will try to assist us in solving this mystery.
Even though they have repeatedly ruled out lung problems, I noticed that while he was being examined by his oncologist, and she was asking him to take deep breaths, the pain was much more severe. When breathing normally, and distracted, he only flinches/winces every couple of minutes. When taking deep breaths, it becomes a whole different ball game.
I am sure that this “presentation” is confusing for the doctors as well. Unlike “normal” problems that we have faced over the years, Zachary does NOT appear to be in any distress, other than the sharp occassional pains, nausea and vomitting. (It’s amazing what you can get used to.)
If you were to walk into our hospital room right now, you would see him watching TV, playing with his toys, and unless you watched him closely, you might miss the occassional flinch.
His blood counts are fine, his blood pressure is good, his heart is functioning normally, his urnine looks clear. But the pain has spread to both sides of his torso, and it has intensified over the past several days.
Taking all of this into consideration, I don’t see where we had a choice when it came to bringing him in. The last thing we wanted to do was go into another weekend without answers.
Scott
Sunday, October 28, 2007 9:01 PM CDT
One week later and here we all are, waiting for an update. There is news, some of it scary, most of it incomplete.
Tuesday of last week we woke up to a new symptom, chest pain. Unlike the breathing problems that have kept us on our toes, this was something different. Zachary was complaining that he was experiencing intermittent pain on this left side, around his ribs. Unlike shingles pain (which we know TOO much about), this was a deep pain that he described as a “flaming knife that goes through his ribs and out the back.” (Not pleasant.) We treated it with pain meds and called the doctors to see what they thought. At that point, it was pretty much dismissed as an anomaly.
Wednesday came, and with it we had a slight increase in the frequency and degree of pain. We got through the day, and the only new idea we were given was that it was possibly gas pain.
Thursday came, and once again, the stakes were raised. The pain had increased exponentially, and we knew that we could NOT go into the weekend with the trend that we were having. We called his doctor and she agreed that we needed to get Zachary to the E.R. to be checked out. We drove him down to Palm Beach and got him in very quickly. They were ready for us, and very receptive to our needs. After several hours of testing, including x-rays, CT scans, blood work, heart monitor, urine check, they found no smoking gun. Their best assessment is that he was having pleurisy. (Inflammation of the lining around the lungs.) This can cause pain in the ribs and persist for days/weeks. Thankfully, there was nothing obviously wrong on the scans, that was the good news. The bad news is that three days later, he is still having the pain issues, and we can’t offer much in the way of answers. They put him on anti-inflammatory meds to help, but he is still wincing from the pain, every few minutes.
To quote Zachary from the other day:
“Why can’t it be someone else for a change? I just want a break from constantly having pain and problems.”
That is NOT at all like our Zachary to be wishing all of this on someone else. He is starving for some sort of normalcy in his life. After 7 ½ years of treatment, I think that Rebecca and I sometimes take for granted that Zachary will be a trooper and just go with the flow when it comes to our roller coaster life. Unfortunately, he is not above getting frustrated with the seemingly never ending hurdles that are being tossed his way. I guess I’ve always looked at him as a super hero that is impervious to these attacks, but I’ve got to remember that every super hero has his/her “kryptonite.”
I was going to write about the continuing saga of my insurance woes, because it got interesting, again. But, I’m just not in a joking mood right now. Remind me in your guestbook entries and I’ll give you that story later this week.
Scott
P.S. I’m off to Ebay to search for a magic wand, to make this mystery pain go away for Zachary. Wish me luck.
Sunday, October 21, 2007 2:40 PM CDT
I know that everyone is waiting for answers or more information about what is happening with Zachary’s breathing issues, but I don’t know that I can satisfy your thirst for knowledge.
This is what we know.
Zachary was put on a steroid for five days to help with the breathing issues. He was also given plenty of refills on the inhaler so that we wouldn’t run out. Meanwhile, we were able to get one of his local doctors to call the pulmonologist office to expedite his appointment so that we wouldn’t have to wait for two more weeks. The doctor’s office complied, and we were seen on Thursday morning. After doing extensive testing, they determined that he does not seem to have any permanent lung damage or airway issue. They feel that he may have experienced a minor bronchial episode that could have been triggered by anything from the airplane ride, to the flu shot, to something in the house. (More on that one later.) They recommended completing the dosage of steroids, (which we did), and then keeping the inhaler handy, and using it as needed. They felt that over time, he would slowly require it less and less. They want to see him again in two weeks, and if he is not showing improvement, they will consider using an inhaled steroid on occasion to address the breathing issues. Since last week, he has been using the inhaler less and less, and thankfully he has NOT had any scary episodes. (Kaynahorah, ptuii, ptuii, ptuii.)
As for the house issues. By shear coincidence, our A/C broke earlier this week. It just stopped working. Being the mechanically challenged individual that I am, I called the service company that installed the system 6 years ago. They showed up, and informed me that we hadn’t had the system serviced in two years. I informed them that I would never have cancelled such a service voluntarily, that they probably didn’t call me to sign me back up again. Regardless of why I was taken off of the list, they offered to clean the system, get it back running, and put me on the service list. While cleaning the system, they found something disturbing in the air handler in the garage.
MOLD.
A lot of mold, growing on everything from the pipes, to the sides. They cleaned the insides of the mold and offered me a system that would prevent it from returning. “For the low, low price of $1,750.00, you can have a UV light system installed that will prevent mold from growing.”
What was I going to do? Say, “NO, I don’t want my son, who is battling cancer & some mysterious lung issue to have clean air that his mold-free.” (That would have gone over great!)
So, almost $2,000.00 later, (after the UV light and the service agreement), we are back to live action in our house.
That is our excitement for the week. I wish that I had more definitive news on the breathing issues, but for now, this will have to do.
Scott
Saturday, October 13, 2007 7:10 PM CDT
Normally, after writing a journal entry like the one that I wrote the other day, I’d let it “marinate” for awhile before updating again. So, if you are finding this update and realizing that it is new, and you are one the few that has NOT seen my last update where I direct you to another Caringbridge site, then please go back and read that one. (If for no other reason than to see the photo of the twins.)
So, what has changed so dramatically in the past few days that I felt compelled to write another update?
Well, Zachary has had some new medical developments that have us a little bit concerned.
I mentioned the laryngitis in the last update. Well, Friday morning Zachary went to the bowling alley with Rebecca to hang out while she worked. I had some errands to run. He was there about an hour when I called Rebecca to ask her a question, and much to my dismay, she informed me that he had just been lying on the floor, short of breath. He had been bowling, and just sat down, then layed down, and said it hurt to breathe. I was getting ready to head down towards Ft. Lauderdale (about an hour away), but when I learned of this new problem, I turned around and headed back to pick him up. I called his local oncologist but was unable to get a hold of anyone. So, I called his local pediatrician, (they are only about 15 minutes away, while the oncologist is about an hour away.) The pediatrician was able to get us in right away. So, I picked him up and headed over to their office. When I picked him up, he wasn’t in any distress, but he was definitely “off” a little bit.
The doctor’s office processed us very quickly, and we were taken into an exam room where the nurse started to check him out. When she brought in the pulse oximeter to check his oxygen level, I knew we were going to have a problem.
You see, lately, for about the past two months, we have noticed that at his regular check ups with the local oncologist, his oxygen levels have been somewhat low. (Usually about 94). A healthy, normal breathing person should have O2 stats of 98 or 99, or even 100.) Zachary has been low, but he hasn’t had any symptoms or other issues that would raise a flag or cause concern.
So, when she walked in with the pulse oximeter, I warned her of his usual low numbers, and I even went as far as to guess that his numbers would probably been even lower, given that he was short of breath. I told her to expect about a 92 or 93. She put the device on his finger, and sure enough, it came up at 91, then 92, then 93, before settling back at 92. (Sometimes it sucks being right.)
The doctor checked him out thoroughly, and she was not at all happy about how his lungs sounded. She said there wasn’t anywhere near enough volume getting in there. She immediately ordered a nebulizer treatment. Zachary completed that, and started to feel much better. She rechecked him, and found that while he was greatly improved, she wanted him to do a second nebulizer treatment before leaving. So, we did a second one. After that, he was MUCH, much better. She told us that she wanted to consult with his oncologist to see about changing his antibiotic to one that fights a certain bug that can irritate the throat and the lungs. She also gave us a script for an inhaler. He was supposed to take it every four hours. We were then sent for a chest x-ray. I took Zachary to lunch, and then we headed over for the x-ray. We were barely back out to the truck to leave the parking lot, and the doctor called with the x-ray results. Everything there looked fine. She then informed us that she had consulted with the oncologist and that they had both agreed that Zachary needed to be seen by a pediatric pulmonologist. I dropped the scripts off at Walgreen’s for the new antibiotic and the inhaler, and brought Zachary home. He was somewhat worn out, so he went to take a nap.
The nebulizer treatments were at about 12:15pm. So, he wasn’t due for the inhaler until about 4:15pm. Rebecca was due to get out of work around 4:00pm, so I figured that would be perfect. I was wrong. Scary wrong.
At about 4:00pm, Zachary came into my room, clutching his chest, gasping for air. I got him to lie down on the bed, and I immediately called Rebecca to see where she was. She was pulling into the Walgreen’s lot to pick up the meds. After hanging up with her, I called the pediatrician. She got on the phone quickly, and I told her what was going on. (I was about 1 minute or so from calling 911, he was complaining of pain at about an 8 on the 1 – 10 scale.) He was still able to communicate (somewhat), and he was breathing, so she told me to try the inhaler when it arrived, and if he didn’t improve quickly, then I was to take him to the emergency room immediately. Rebecca walked in a couple of minutes later, and we gave him the inhaler. Within seconds, he was improving. I called the doctor back and she said that we needed to wake him every four hours through the night to make sure he was getting his inhaler treatments.
Since then, he has been slowly improving. His voice is starting to come back, and he has not had any “attacks.” Now the big question is, “What is causing these lung problems?” His 02 stats have been low for a while, so is this something that has been creeping up on us, or is it somehow related to the new chemo? I did put calls into Philly to find out what they wanted us to do. We are scheduled to restart chemo tomorrow, but I haven’t heard back from them, so we will NOT be starting chemo until we get a final answer. A day or two won’t be the end of the world, and we just don’t know enough about this drug to be gambling with his lungs if there is even a tiny chance that the drug is the problem.
So, here we are, in limbo, trying to get to the bottom of a new mystery. And of course, the first appointment we could get with the pulmonary specialist is a week from next Thursday. So I’m guessing answers won’t be arriving anytime soon. Zachary wants to go back to school, but now we need to get a new note for the school giving them medical permission to hold, and administer the inhaler in case of emergency. So, he probably won’t be allowed to go back for at least another day.
He was able to bowl today, and he didn’t have any issues, so hopefully the inhaler treatments are doing the job.
Scott
P.S. While I was searching Google to see how to correctly spell ‘oximeter’, I found out that I can buy one for $69.00, so I’m thinking that it would be a good thing to have around. I gotta run and spend some more money.
Thursday, October 11, 2007 7:29 PM CDT
WOW, no complaints about a lack of an update, and I still did one!!!
Things around our house have been quiet, literally and figuratively. Zachary is still fighting his mysterious illness, and the only real symptom that he is exhibiting is laryngitis. He has had no voice for a solid week now. The antibiotics seem to have prevented any other symptoms from popping up, but the voice thing is non-existent. He has been keeping up with his school work while at home, so it is hard to complain too much about anything from his end right now. (That is a good thing.)
Our new business is starting to take life. We have some new advertising that has come out in the last few days, and we have begun to receive calls. So we are out quoting jobs, and hopefully this trend will continue. I did have another interesting insurance story that came about from my business.
While applying for a reciprocal license for another county, I had to submit a credit report on myself. The credit reporting agency called me and informed me that I had two medical charges on my report. Hmmmm. I immediately figured that one of Zachary’s bills got missed somehow, and that they got turned over for collection. (But I had never been notified, so I was confused.) I quickly learned that the two bills were not for Zachary, but for me! Apparently, when I had my colonoscopy back in 2005, two of the bills from that procedure never got paid. I received the contact information for the two collection agencies and began my search for the truth. The first agency was happy to hear from me. They said that they had tried numerous times over the past couple of years to contact me, but they had failed to find me. (I didn’t know that I was hiding. Maybe I wear too much camouflage clothing or something.) They told me that the address they had was from Jake Court in Stuart. Hmmmm. Well, that explains it. I lived there prior to 9/99, eight years ago. They got my current information, and promised to mail me the bill so that I could pay it.
I then contacted the second collection agency, knowing that they too would have the wrong address on file. Apparently, the treating hospital had never updated my address from when I had been there many years ago. They too confirmed that the address that they had on file was the wrong one. Then I learned something interesting. They also said that the insurance claim had been rejected back in 2005 because the policy number came back as inactive. Hmmmm. Inactive. That doesn’t make any sense. They went on to say that the policy number was inactive from waaaaaay back in 2001.
2001?
Now why does that ring a bell?
Oh yeah. When Zachary was originally diagnosed, we had BC/BS through Rebecca’s job. Within a year of treatment, they got tired of paying all of Zachary’s bills, so they dropped the entire company and made them go with another carrier. We lost our BC/BS coverage, and that was in 2001. Later, years later, I got back on BC/BS through an individual policy of my own. Somehow, the treating hospital never updated my address, OR my insurance information.
At that point, I decided to call my insurance company. They did some digging and determined that neither of the claims in question had ever been submitted to them. They also informed me that the providers had a time limit, one year, to submit their claims. Otherwise, no money honey. I contacted the first collection agency and spent a considerable amount of time relaying this entire story to the collection rep. She agreed that the provider (their client) was going to have a VERY difficult time collecting from me, given that they had never A). Billed the insurance company using the correct policy number, and B). Never notified me by mail, given that they had the incorrect address. And the REALLY interesting fact, that saved me from being the bad guy here, was this:
I HAD GIVEN THE CORRECT INFORMATION TO THE PROVIDER BACK IN 2005, AND I COULD PROVE IT!!!! I had paid several bills related to that procedure. My insurance company had paid several bills related to that procedure. So I had given the correct information. But somehow, at some point, the provider had not passed along the updated information to two of the departments that were trying to bill me and my insurance company.
So, collection agency #1 asked me to write them a letter explaining everything that I just told all of you about. She said that once they received the letter, they would have the provider investigate as to which policy number they used way back when to make a claim against my insurance with. If they did indeed use the wrong number, (which we all know they did), then they would probably have to write off the claim, and fix my credit.
The second collection agency tried to fight this logic for about an hour. I made about 8 phone calls and finally got a hold of the provider. They made a weak attempt at saying that it was my responsibility to take care of this, but I stayed firm in my opinion that I had no control over them submitting the incorrect information, and I had no control over them sending my notices to the wrong address, therefore I had no real opportunity to fix this for them when it happened. I even informed them that had they done even a brief informal search on the internet, they could have found me. In the end, they too asked for a letter explaining my story, and they promised to investigate the matter and try to resolve it for me.
I guess life wouldn’t be interesting if I didn’t get to fight these wonderful battles.
On the brighter side of things, I have wonderful news to report. But, I really think that if you want that wonderful news, you need to go to the Caringbridge page listed below, and read the news yourself. This close friend of ours hasn’t updated in a long, long time. They lost a son to cancer years ago, and they deserve happiness in their lives. So, as I have done before, I am asking for you to take a few moments of your time, and go and visit their page. I would also greatly appreciate it if you were to take an EXTRA minute or two to sign the guest book. (Make sure that you scroll down to where the new journal update is to see the good news.)
Now, before I give you the web page, I want you all to remember that I am vindictive, mean, resolute, and cunning. If for any reason I feel that you lurkers out there are NOT responding to my humble, yet firm request, I dare say that the repercussions could be HARSH for you. Like, let’s see, maybe a month with no updates, or perhaps two months. How long do you really think that you all can go without my soothing words of wisdom? Let us NOT try to find out please. Do as you’re told, and we’ll all get out of this without any scars.
www.caringbridge.org/page/jakegriffin
Scott
P.S. I’ll be watching their guest book. Don’t let me down.
Thursday, October 4, 2007 9:57 AM CDT
It’s always nice to be able to start off a journal entry with good news!
Rebecca and Zachary got back from Philadelphia safely, and with them they brought encouraging news about Zachary’s status. For the second straight time, our oncologist in Philly feels that Zachary’s MIBG scan has shown some improvement. The “official” radiologist’s reading states, “Stable.” However, our oncologist compared yesterday’s scan to both the previous one, and the one from before that, and she is seeing improvement. It may be slight, but it is there. She also was able to reduce Zachary’s pain medicine again, so hopefully his fatigue issues will slowly go away.
Rebecca was able to get the oncologist’s input on the school issues that we have been facing, and her opinion is that we should try to get Zachary into more counseling, to help deal with this issue. She was very upset that this is occurring, and wants to help us in any way possible to make this get better. We are getting ready to start round 7 of this new chemo, once we hit round 10, we can start spreading out our Philly visits even further apart. We were informed that Atlanta now offers this treatment; however, we are VERY happy and comfortable with our doctors in Philly, so I don’t see us making any changes on that front. Besides, the cost of flying to Atlanta versus Philly is virtually the same, so unless we were going to sacrifice a couple of days for driving up and back, there really is no cost savings in switching. And Zachary is comfortable with the setting in Philly, so I don’t think there is an advantage right now to do anything differently. (Once it starts to snow in Philly and the temperature drops below 10 degrees, I might be singing a different tune.)
While they were up in Philly, they ate dinner one night at our favorite Chinese restaurant that we found a few months ago. I have written before about some of the odd fortunes that we have gotten from cookies, but the one that Zachary got from this trip takes the cake. During dinner, Rebecca was of course giving Zachary a hard time about not eating enough vegetables. Then the cookies came, and Zachary always wants to pick his out, for better luck. Here is what was on his fortune:
“A carrot a day may keep cancer away!”
I swear to you that this is real. I have seen the fortune; Rebecca brought it home from Philly. Once again, I couldn’t make this stuff up if I tried.
Scott
Saturday, September 29, 2007 10:42 AM CDT
Ooops.
Retraction time.
Apparently young Zachary did NOT have a repeat episode of the name calling on Thursday. He did however report to the school staff that it had happened again.
After consulting/talking to/prodding/ and doing everything else I could think of, Zachary has conveyed that he is very distraught/stressed out about what happened last week and earlier this week. He is NOT comfortable being around these kids right now. He feels that they are giving him dirty looks, and he is focusing TOTALLY in his mind on the comments that were made. He knows he should not have told the staff that it happened again, but at the same time, he is somewhat desperate to be away from them.
Thankfully, we had a doctor's appt. yesterday, and then he is in Philly next week until Thurs. (How sad is it that we are thankful that he has doctor appts. so that he can avoid this stress?)
I call the school and let them know that the kids had not acted up again. I certainly do NOT want kids getting in trouble for something that they did not do. But, at the same time, I do NOT want Zachary walking around in a paranoid state, depressed about life because of the previous hateful comments.
I am hoping that a good dose of Boggy Creek will turn things around for us.
Scott
Thursday, September 27, 2007 11:02 PM CDT
Boy did I ever ignite a firestorm with that last journal entry. If I had known that I could get THAT many people to write THAT many guest book entries with THAT much emotion, I’d have been making up stories this whole time.
Unfortunately, that last journal entry was NOT made up. Sadly, it was true.
Now, first things first. To all of you cool headed, calm, thoughtful, sedate parents out there that were shocked by the fact that I didn’t go out and buy an M1 tank and start driving around the neighborhood looking for guilty thugs, I have this to say.
“YES. My first instinct was to contact the parents directly to see if I could fix the problem.”
However, I paused. I took a deep breath. And I asked for advice. But, even before I got that advice, I did what I always do. I played out every scenario in my mind that I could conceive of involving potential conversations and outcomes had I contacted their parents. This is something that I have done since I was very young. I try to play out every possible way a conversation can go, so I am prepared to react with the appropriate response or comment. When I was younger, it was somewhat of a hindrance, because it can slow you down when you are taking the time to think that way. Over the past 15 years or so, I perfected the process to the point where now I am rarely surprised by what I hear.
Having done this exercise for this little drama, I found myself encountering many, many more BAD outcomes than good ones. And the advice that I received meshed very well with that instinct. Once conversations like that start to deteriorate, there really isn’t a “good” way to get out of it. I believe that most outcomes would end up with one parent threatening another. And that would accomplish nothing. Because, at the end of the day. Zachary should not have to endure this nonsense. He should not have to change his schedule, or his life, for these punks.
This drama unfolded on Tuesday. Zachary goes to school for half days, so he wasn’t there until the afternoon, several hours after the boys in question were spoken to about this kind of behavior. That day went pretty well according to Zachary. He got some dirty looks, but no comments. And to quote Zachary, “I can deal with dirty looks, I just can’t take anymore of those cancer/dying comments, they are too upsetting.” Yesterday was an early release day, so Zachary didn’t go at all. (No sense in sending him for an hour or ninety minutes. Today he was back to a full day.
Rebecca and I went to watch him help coach the soccer team after school. Unfortunately, while we were there, we learned from an administrator that Zachary was in the counselor’s office today complaining about one of the punks having made another remark. (They bumped into each other in the hall, and the kid said, “Don’t touch me cancer kid.”) I asked that the parents now be notified. I have also contacted one of our child-life specialists that is very good at dealing with school issues.
The good news for now is that tomorrow, Zachary has a doctor’s appointment early, and then we are off to Boggy Creek, so he won’t be there tomorrow. And then next week, he is in Philly from Monday – Wednesday. So he won’t return until Thursday. That gives the school several days to figure this mess out. And trust me, I will be in town. I will be on this. I will be the voice of reason. I will be the voice for justice.
I do appreciate all of the support, comments and suggestions in the guest book. I particularly found Donna’s comments/links/ideas very interesting. I really don’t want to turn this into a circus, but I will not tolerate any more of Zachary being victimized by these kids.
Take care, and hold your breath until next week. If I learn anything, I will pass it along.
Scott
Monday, September 24, 2007 9:33 PM CDT
Just when you think you’ve got all of the angles covered, you get outsmarted not once, not twice, but three times, and all by women!
There I was, thinking that I had thought of everything, having “tagged” all of you, and then I see the error in my ways.
First of all, there was Juliet. She got me with the whole, “I’m rubber, you’re glue,” etc.
Then there was Sharon you noticed that I never mentioned, “No tag backs.” And she got me with, “Tagged you back, you’re it again.”
And lastly there was Tina who was smart enough to notice that I didn’t exclude the tree in her back yard as a viable base. She was safe, and I was caught unprepared.
It just goes to show you, women cannot be fooled! Don’t bother trying.
Now onto bigger and more important issues.
Medically speaking, things are going as planned. Zachary goes back to Philly next week for normal testing, and we are not anticipating any issues. (Kaynahorah, ptuii, ptuii, ptuii.) The doctors have lowered (slightly) his pain meds in an attempt to relieve him of some of the fatigue that he has been experiencing.
Psychologically, I am afraid that things are not as good as they could be.
Zachary has always been one to keep his emotions in check. An amazing feat, in light of everything that he has been through. He very rarely shows any signs of sadness, especially in the form of tears. (I on the other hand can cry when a good TV commercial comes on.) So, you can imagine our distress when he was crying this evening about school.
His grades have been good, and he has not been fighting too much when it comes to keeping up with work, so I was surprised to hear that there was a problem. Apparently, the problem is NOT with the work, but with kids picking on him.
There is a very specific group of boys and girls that have been torturing him about his cancer. Here are some of the quotes that Zachary relayed to us:
“Ooooh, it’s the cancer boy. Why don’t you just quit, you know you’re gonna die? Just get into your coffin now.”
“When you die, you’re going to hell. Say hi to my grandparents when you get there.”
[poke] “Look, I touched the cancer kid; I’m going to die now.”
“Don’t breathe around Zachary, his cancer will kill you.”
“Those scars look like bullet holes and knife wounds, you must be in a gang.”
“Why even come to school, you know you’re gonna die?”
Well, there you have it. Teenagers at their finest. I must admit that my first instinct was to call the parents to try and reason with them, maybe convince them to have their children just leave Zachary alone. But, I am lucky to have some excellent resources when it comes to school related issues, and the advice that I am getting is to let the school handle this. I guess things can get blown way out of proportion when parents start to confront each other. So, I am going to give the school the opportunity to fix this.
It just breaks my heart, (YES, I do have a heart) when I see him this upset. At thirteen, he is by far no angel, but no one deserves this kind of treatment. He has been through enough. He just wants to fit in and have friends. He really loves being in school with his friends, but if this continues, he has said that he wants to leave school and just take classes at home.
This would devastate him. He is the manager of the soccer team, which he loves!!! He also really enjoys the interaction with the other kids when he is at school for his half days. So it would suck to have him lose that because of a few punks.
Scott
Friday, September 21, 2007 5:21 PM CDT
TAG
You're it!
Scott
Saturday, September 15, 2007 8:18 AM CDT
You know, I’m a fairly well adjusted, middle aged kind of a guy. At 44 years of age, I still feel like I have most of my physical agility and sports-like skill from my youth. Sure, I recognize that I don’t run quite as fast as I did years ago. And I am aware that if I don’t stretch and get limber before exerting myself that I will pay the price the next day with sore muscles. But, I have always been able to either excel, or “hold my own” when it came to sports.
Water skiing, snow skiing, soccer, basketball, softball, baseball, football, street hockey, roller blade hockey, tennis, volleyball, racquetball, kayaking & swimming. These are just a few of the sports that I have either participated in on a recreational basis, or played competitively in a league or organized manner.
If you were to include some of the less physical “sports”, I can add, pool, ping pong, bowling, darts, horseshoes & bocce, just to name a few.
So, suffice it to say, I have a pretty well rounded background when it comes to activities requiring coordination and skill.
Of all the activities that I listed above, I would have to say that the one that I have never gotten above average in is bowling. I took bowling in college for one of my electives, but I never took it seriously and never really had enough of an interest to pursue it further than the occasional outing. For years my best game was about 150, and then a few years back I was with friends and family and bowled an uncharacteristic 175. Other than that, I’m usually good for a score that will fall somewhere between 100 and 135. Not a stellar score, but it is what it is.
Now, Zachary started bowling when he was younger. (Maybe 6 or 7). He got some pointers from some friends and did OK. When he took his time, he could get over 100, sometimes 115 or 120. He hasn’t bowled consistently for quite some time. About two weeks ago, he got interested in bowling again. Let me rephrase that. About two weeks ago, he got interested in some girls that were interested in bowling. (It’s that whole math thing. A to B to C.) So, it didn’t take much for these girls to talk Zachary into joining their bowling league that was getting ready to start. He signed up, and the first week he bowled like a 75, 95, 106. (Approx.) His ball from years ago was one of those ridiculously light plastic things. So of course, I was talked into getting him a new $85.00 ball that you could use spin with. All of this in my mind was a waste. Here I am thinking that he’ll get bored with it, and we’ll have something else to collect dust in the garage.
Well, that all started about two weeks ago. Since then, he has become obsessed with bowling. The other day, while bowling some practice games, get had a three game series that was: 141, 200 & 149.
Yes, I wrote that correctly. He bowled a 200.
This sucks.
Kids are NOT supposed to be better at stuff than their parents.
Certainly not better than me.
We went to Blazer Bowling over the weekend and bowled two games with friends. Zachary got a 149 and a 135. I never broke 120 on either game. Life is NOT fair.
He has somehow found a curve that snakes into the pocket on almost every ball. He is hitting at or near that front pin very consistently.
I’m toying with the idea of grounding him and taking away the ball. He hasn’t done anything wrong; I just don’t like being outdone by a 13 year old.
Scott
P.S. For those of you that have been following our law suit against the original evil doers, you may find it interesting that after a year of waiting for the 11th circuit to decide whether or not to allow our appeal to move forward, they have just recently asked for the ENTIRE case file (an interesting request), and then two days ago they informed us that we have been granted oral arguments in November! This will be our chance to argue for our right for a trial.
Tuesday, September 11, 2007 11:23 AM CDT
The Top Ten Reasons Why I Haven’t Updated In Over A Week!
#10). The lunar eclipse interfered with the uplink connection and prevented me from posting an update.
#9). I actually DID write an update, but my dog ate it.
#8). I tried something new, using mental telepathy to transmit my update to the internet, did it work?
#7). I lost my permission slip from Rebecca and was afraid to ask for another one.
#6). While picking my nose I got a horrible cramp in my fingers and couldn’t type.
#5). I was so busy reading all of the guest book entries that I didn’t have time.
#4). I’ve been on safari in Africa and there was no internet connection there.
#3). Zachary hasn’t said or done anything worthy of an update.
#2). I’ve been on hold with Cigna this whole time and couldn’t get away long enough to type an update.
And, the #1 reason why I haven’t written an update in over a week is:
I WAS JUST TOO FRIGGIN’ LAZY!!!
Well, no news is good news. Zachary is smack dab in the middle of another round of chemo, and thankfully there is nothing spectacular to report. He is pooping just fine, and he is not having any pain issues. We are scheduled to return to Philly the first week of October. Other than that, medically, there is nothing to report.
Although, I did receive a request from Cigna asking for a note from the doctor explaining why the tests/treatments from Philly are medically necessary. I got them their letter, but I can’t help but wonder why they even ask for it. Like the Philly doctors are going to avoid writing the letter so they can further delay getting paid for their services.
Asking for something that you really just don’t need, that is the topic of today’s update.
In case I didn’t mention it earlier, I have a new business. Along with two friends, I am now a fencing contractor. (I can feel many eyebrows being raised around the world right about now.) Everyone out there in computer land is thinking the same thing: “I wouldn’t trust Scott to wash my fence, let alone build one.”
Well, I guess I deserved that one. Seeing as I am a self-proclaimed inept individual when it comes to repairing, building or any other hands on type industry.
BUT, and there is definitely a BIG BUTT there. I am not part of this new corporation for my fencing knowledge. My one partner has been in this business for many, many years and brings excellent knowledge to the table. I am there for my customer service and business skills. Having run my previous business for over 11 years, I have proven skills that will come in handy in an industry that is rife with people that wouldn’t know customer service if it bit them on the nose.
So, back to my story about asking for something that you don’t need. Well, one of my jobs in this new venture is to handle the logistical aspects of the business, like getting us licensed in other counties in our area. Now, this process has lowered my levels of respect for bureaucracy and what makes government tick. Apparently, being licensed as a fencing contractor in one county, does NOT necessarily guarantee you reciprocity in another. The testing process is standardized. BUT, each county has its own score levels that it requires. Now, our “home” county is Palm Beach, and they have the highest requirements on scores for any county in the state. So, if you pass in Palm Beach, you won’t have issues with your scores when you apply in other counties. That is the good news.
The bad news is, the other counties can ask for all sorts of other things to delay you from getting your license to work within their borders. I do not understand this. Why would you have a state mandated test, a standard scoring system, and then NOT come up with some sort of fee structure that allows contractors to work in other counties. (Don’t get me wrong, they GET their fees.) But, in addition to their fees, some of them make you go through all of the paperwork that you completed the first time around. For example:
Copies of your license from the other county.
Copy of your insurance.
Copy of your proof of Worker’s Comp. or exemption.
Full application.
Three work references.
Two personal references.
Copy of your articles of incorporation.
Bank information.
Resume.
Credit references.
(This is NOT an exaggeration; this is an actual list from a couple of nearby counties.)
Now, I can see where a county would want to look out for its people, and protect them from the evil doers. But, why not standardize the requirements, and then just ask for a fee for contractors that want to cross county lines? (Something that is quite common down here.)
So, back to my topic of the day. This one local county will NOT email, fax, or post online their application. They require that you go in person to pick one up. So I did. While picking it up, it was explained to me that they don’t like to have people making mistakes, so they want to explain the process in person. I listened to the entire set of rules and instructions. Now keep in mind, that this is by FAR the most stringent set of rules for ANY county that we know of. These folks take their contracting seriously! While explaining what was required, the man got to the part about the two personal references. This is what was said: (And I’m not making this up.)
Clerk: “You need two references that are personal.”
Me: “So they can be anybody that knows our President personally?”
Clerk: “Yes, anybody that knows him is fine. And you should have the two people that are writing the letters of reference use words like ‘integrity’, ‘honesty’, and ‘good character’.”
Me: “Well, my partner and I have known our president for over 10 years, but we’re part of the company, I don’t suppose that we can write letters for him?”
Clerk: “You sure can, just make sure you use those ‘key’ words when talking about him.”
So, I wrote the two letters, one for me and one for my partner. I created a letterhead for each of us on Word. I used the key words that they wanted to see, and I altered the two letters just slightly. I signed mine, and he signed his.
When I was turning in the paperwork today, a different clerk was reviewing my papers. She was checking off things as she went through the stack. When she got to the two letters, I held my breath, waiting for her to say something like, “These are no good, you guys are part of the company.” But what happened next was right out of a Twilight Zone episode. She grabbed a yellow highlighter, and highlighted our President’s name (which we obviously referenced in the letter), the word ‘honesty’, the word ‘integrity’, and the phrase ‘good character.’ She then repeated this process with the second letter.
So, in a county that prides itself on how careful they are when licensing contractors, they give you the words that they want to appear on the letters. They allow you to vouch for your partner. AND, they gladly highlight the words that they gave you, to show that they are “checking” your paperwork. AMAZING!!!
The other interesting thing that caught my eye was in the parking lot. I had to kill about 20 minutes while I waited for them to return from lunch. While waiting, I noticed something odd. The complex is brand new. BRAND NEW. New buildings, new parking lots, new trees, new everything. The huge sign that hangs on the building department annex is round. It is about 8 or 10 feet across and has the logo and name for the county.
It was hung crooked. By about 10 degrees or so. It would be like hanging a clock on the wall, with the ‘1’ being in the ‘12’ position. Whose brother or cousin or best friend got THAT contract? How does a county NOT see that their sign is crooked? The thing is OFF. I’m going to have to go back and take a picture so you can see it. It’s just amazing!
The only other excitement in our lives came about a week ago. Rebecca was doing laundry, and while walking past our kitchen sink, she noticed that water was rising in the sink. I came out and ran the disposal a few times, however, no matter what I did, one side or the other would have water rising in it. When Rebecca returned to the garage to check on the laundry, she noticed that the slop sink was full, and the washer had overflowed covering the garage with what can only be described as “puke water.”
Now, I know that I have somewhat of a reputation as an exaggerator, but let me tell you, when I say “puke water”, I mean “PUKE WATER.” Our garage smelled like a vomit pit. An overfull vomit pit. We got a plumber out and they had to clear out lines. Apparently, there was about 10 years of melon rinds backing up our pipes between our house and the street. (My lack of knowledge regarding all things having to do with plumbing is only surpassed by my lack of knowledge when it comes to fixing cars or building things.) I paid the man gladly and learned my lesson. NO MORE RINDS DOWN THE SINK!
Scott
Wednesday, August 29, 2007 12:17 AM CDT
Bucking the trend of only updating this page once per week, I have decided to give you all a “bonus” update today.
Over the years I have written several updates that have dealt with our experiences with Cigna. (Better know as the “Evil Doers.”) So, in fairness to the “Evil Doers”, I have decided to write something nice about them, sort of. We were contacted recently by our new case manager! (TA DA).
(That didn’t have quite the impact that I was aiming for, did it?)
We have, in the past, been assigned a case manager on at least 3 other occasions that I can recall. Each and every time, the case manager had NO ability to manage ANYTHING, let alone our case. So you can appreciate why I may have been somewhat skeptical when we received news of yet another person who was there to help us. But, being the fair, calm, thoughtful, and understanding kind of guy that I am, I decided to give this new person the benefit of the doubt. (In other words, I was willing to give her just enough rope to hang herself.)
Thankfully, she has proven to be helpful so far. I have called and emailed her about a couple of bills that providers are claiming have not been paid on properly, and she was able to address the problems and make the necessary adjustments. The other interesting fact is that she is not only our case manager, but she specializes in oncology. (Hmmmmm.) (That might have been a way to lead into my next comments.)
About two weeks after we were contacted by our new case manager, we received an interesting packet from Cigna. It contained a variety of brochures along with a letter that read as follows:
Dear Member,
It has been brought to our attention that you may have been tested for and/or received medical treatment for a cancer diagnosis. Since our information is based on health claims records and not information provided directly by your physician or other treating providers, it may not accurately reflect your medical condition. If that is the case, please disregard this letter.
Enclosed are brochures that provide information about living a healthy lifestyle and ways to help prevent cancer. These brochures are provided to you as part of the CIGNA Healthcare oncology program.
If you or a family member is currently in active treatment for cancer and need assistance, please call the CIGNA Healthcare oncology program at (phone number.)
This program is designed to support participants and their families who are coping with a cancer diagnosis. Our goal is to help educate you and your family on your diagnosis, provide you with additional information about your treatment options and help you to minimize or avoid some of the side effects and complications of treatment. In addition, we will answer questions about your health benefit plan, and tell you about available resources and services that may benefit you or your family. As needed, an Oncology Program Specialist will help coordinate your health care services, as well as facilitate communication among your treating providers.
We hope you find the information in these brochures helpful.
Sincerely,
Oncology Program Specialist
WOW, they seem to have thought of everything! (Or have they?)
Let us take a close look.
Where should I begin? Oh, let’s see, I think I’ll start with the letter, specifically the part where they are saying, “We believe you have cancer, unless we were misinformed, in which case, sorry for scaring the shit out of you.”
(OK, in their defense, it wasn’t written EXACTLY like that, but that’s what I saw when I read it, so whatever.)
How is it that they are just NOW figuring out that Zachary has cancer? One would think that all of the chemotherapy over the years would have been somewhat of a clue as to what his diagnosis was. Although, I'm sure there is an entire subculture of street chemo users out there. NOT
What should we look at next? How about the helpful brochures, that seems like a logical place to start?
There were four brochures enclosed, I will start with the one titled:
“Eating More Fiber”
This one is actually pretty harmless. Zachary could use some more fiber in his diet, and this one basically tells you how to accomplish that feat. It does NOT however, explain how to get a 13 year old child to replace beef jerky, candy bars, fruit roll-ups, and macaroni & cheese with broccoli, nuts, asparagus, and fruit.
The second one is titled:
“Choosing Fats – They’re Not All the Same.”
This one deals mainly with trying to cuts fats, so that you can lose weight. Hmmmm. (Did I miss the memo where we were trying to get Zachary to lose weight?) I thought we were trying to keep the weight on, because of the loss of appetite that he occasionally experiences. (But what do I know, I’m just a parent. I guess we will start to cut back on his diet and try to get him to shed some of those excess pounds that they are so concerned about. After all, he’s up to almost 112lbs. We certainly don’t want him going over that 115 mark!)
The third one is titled:
“Get Walking! For Better Health at Any Age.”
This one is chock full of cartoon images of older folks walking with canes, and trying to get exercise. Well, I guess we can start ignoring the potential of more peripheral neuropathy in the feet and listen to this brochure. After all, they MUST know better than our docs in Philly. And besides, a little pain in the feet that was registering about a 7 or 8 out of 10 is no big deal. We’ll get him walking ASAP!
The fourth and final one is my favorite:
“How to Prevent and Detect Cancer.”
This one starts out harmlessly enough with a section on eating right. Once again, they talk about a balanced nutritional diet that includes all of the right foods and none of the wrong foods. (I’ve never seen so much mention of wheat, fiber, lentils, and cabbage on one page before.) The second section deals with staying in shape. Once again, on the surface this appears to be a somewhat harmless bit of advice, IF we weren’t scared out of our minds about aggravating his neuropathy. The third section is titled, “Stay in the Shade.” This one deals with the dangers of skin cancer and how to avoid the sunlight. (I guess it’s a good thing that we don’t live in Florida, where the sun is about 50 feet over our heads and burning down on us at about 50,000,000,000 degrees!) The fourth section is titled, “Quit Smoking.” Wow! Thank goodness they included this one, because we weren’t sure whether or not to keep Zachary away from cigarettes. He did try those 2 or 3 a couple months ago, and he liked them, so we were tempted to start allowing him to continue with that habit, BUT, now that we see in this brochure that it is recommended NOT to smoke, we will make the right choice! The next section addresses healthy habits. One of the focuses here is limiting your intake of alcohol. Hmmmmm. (It’s as if they KNOW Zachary personally and have tailored this brochure to HIM!) I guess the bad news is that he drinks beer, but the good news is that it was LIGHT beer, so he IS watching those excess calories, WHICH according to the earlier brochure, is WAY important! The last part of this gem deals with self-examination for signs of cancer. First they show what skin anomalies look like, and then they get into self examinations for women. This part actually shows illustrations of women (naked) and how they should examine themselves. After that, they go into male self-examinations, where they show a man fondling (examining) himself. I’m thinking that if I give this brochure to Zachary, he’ll see the section on women examining themselves, and then we won’t be able to get him to STOP examining himself! So, while I’m sure their intentions were good, the last thing that I want to hear from him is how this brochure doesn’t stack up to the Hustler magazine that we confiscated from him earlier. At the end of the brochure they include some charts that discuss at which ages you should do which type of testing for cancer. Amazingly, the first age range shown is 20 – 29.
I’m guessing that these brochures were NOT written with pediatric oncology in mind! (But that’s just me talking, what do I know?)
Scott
P.S. Rebecca just called from Philly while I was finishing up this entry. Zachary’s MIBG scan from this morning shows that the disease is stable. There may be some lightening of the sites (slight improvement); however there is nothing definitive, so they are writing up the report to say that he is stable. (Stable is good. Stable is better than progression.)
Monday, August 27, 2007 8:07 AM CDT
Nine days and no updates, it could be worse, I could have waited 10!
Week #1 of school is under our belt and no major problems were experienced. Zachary did say that he had to walk away from three different “potential fights.” I don’t know what that means, but it never ceases to amaze me how kids these days will get into fights at school when they know that the punishment is much harsher than when we were young. Nowadays, they get an immediate 3 day out of school suspension, with a possible expulsion, depending on how severe the fight was.
One kid apparently walked up to Zachary and said, “I want to fight you, you’re weak because you have cancer.” (How I would like to see that little gem of a child get his comeuppance!)
Rebecca and Zachary leave this morning for Philly. This will be their first trip there without me. (I took Zachary without Rebecca once, and we have been twice as a family.) They will be getting an MIBG scan to see how things are doing, and to get a refill on the chemo.
Yesterday was the annual Connor Moran Children’s Cancer Foundation outing to the Rapids Water Park in West Palm Beach. This is always a fun day water play in the sun. We had great weather and everyone seemed to enjoy the day. Afterwards, we stopped by the local mall in Palm Beach, because it has an Apple store. The reason we were stopping by an Apple store is that young Zachary’s Ipod is malfunctioning. When you turn it on, the screen shows lights and shades, but no words or menus. The folks at the Apple store informed us that the Ipod is out of warranty, and that if we want to send it off for repairs, it would probably cost more than a new one. Our other option was to trade it in on a new one and receive a 10% discount. As much as I hate to reward stupidity, (did I mention that the reason the Ipod is not working is more than likely due to the fact that young Zachary submersed the device in a soft drink?), I didn’t want Rebecca to have to deal with Zachary on a trip without him having his music to listen to. So, we made the trade and got him a new Ipod. He loaded his music onto it last night, and they are now set for their trip.
Hmmmmm, soda and Ipods don’t mix??? Who’d have thought?
Scott
Saturday, August 18, 2007 3:36 PM CDT
Sorry once again for the lapse in journal entries. Fortunately for us, things have been relatively quiet on the home front. Without the use of his cell phone, or his freedom, Zachary has not had access to things that could get him into more trouble.
Zachary’s pain issues from the chemo only reared their head for a day or two on that last round, so the doctors in Philly have graciously allowed us to begin a fourth round of this drug. We started on Monday, so tomorrow is our last day on this round. They reduced the dosage again, this time to the lowest allowable dosage of this drug. So, if Zachary has any pain issues this time, then we are done! (I’m not sure how high the pain would have to be for them to cut us off, but my guess is that even one day of wheel chair use will end our run on the ABT-751 protocol.)
The good news is this; we have a firm backup plan. If the ABT-751 fails us, then we are moving forward with the low dosage MIBG treatment that will require a one day visit to Philly about every 6 weeks. (I sleep MUCH better at night knowing that we have a backup plan.)
As for the pain issues, I am very pleased to write that with the increased levels of Neurontin, we have NOT had much of any pain in the past several weeks. The highest level that he complained of was about three weeks ago and that got up to about a 5 or 6 on the scale of 1 to 10. The news related to the pain medicine that I am happy to report is Zachary’s energy level. The Neurontin “should” be making him sleep a lot of hours each day. We have heard from numerous folks out there that have either been on this medicine or have had a loved one on it, and they ALL report how tired it makes you. Zachary is on a large dose and he remains to have high levels of energy. He still stays up late and has no problem waking up in the morning. The only factor that I can attribute this to is the Chaga. Chaga is the herbal supplement that I alluded to many, many weeks ago. All three of us have been taking it and I am convinced that it is helping!
When I was out on the road “selling” fishing tackle to the shops around Florida, I never looked at myself as a “salesman.” I hate salesman! (No offense.) I always felt more like a “service provider.” I would walk around a shop, see what was missing and convey that information to the owners. If they wanted to buy, that was great, if they didn’t want to buy, that was OK too. I have always disliked “hard” sales tactics.
So, in keeping with that mindset, I will NOT be “pushing” the Chaga. I mentioned it when we first started it, and now that we have been using it for a long time (about three months), I am comfortable enough to mention it by name on here. We have had many herbal/fruit supplements presented to us, but I have yet to see one that is as strong an antioxidant as this one is.
So, there it is. You now have been officially “pitched” the supplement that we are relying on! www.mychaga.com/Finest1
If you decide to check it out and have questions about any of the information, don’t hesitate to call or email me and I will be happy to give you the answers that you are searching for.
Now, onward and upward.
Zachary finally got his cell phone back today. (He ended up selling off a bunch of his video games to start paying me back for the ridiculously high bill that we got.) I hadn’t planned on giving it back this soon, but one of his closest friends had his father die this week, and the boy has been trying to reach Zachary. This boy has ALWAYS been a close friend of Zachary’s and has always been there for us, so I wanted Zachary to be able to be there for him.
(I did create an Excel chart that Zachary is required to fill in each and every day with the current number of peak minutes that are on his account. This way, all I have to do is check the chart and know whether he is talking too much.)
Scott
P.S. I woke up early today (around 5am) and started to think again about putting all of the journal entries and some of the guest book entries into a book format. I’m not making any promises here, but I AM thinking about it again!
Friday, August 10, 2007 8:59 PM CDT
In the big scheme of things, I’m guessing that there aren’t many things that are more frustrating than walking out to your car, only to find that one of the tires is flat. Well, except maybe planning a fishing trip, only to have it get rained out. THAT is really frustrating. But, then again, cutting into a fresh melon expecting it to be sweet and juicy, only to find that it isn’t ripe yet, THAT is even more frustrating. Wait, forgetting to set your alarm clock and then being late for an important meeting, THAT really sucks. I guess that is the epitome of frustrating, UNLESS you are including teenagers in this discussion, then they surely take the cake!
I was just reviewing that last journal entry and it dawned on me; I sure do miss the good old days, when he was just hiding knives, cigarette lighters and Hustler magazines!
(And all of that was just over a week ago!)
Last Saturday I was cutting the grass. (I’m guessing that ANY other family could start a story off with those words and NEVER manage to twist it into something bizarre or off the wall, but we’re just NOT like the other families, are we?) So there I was, cutting away, and I got to weed whacking and edging near the fence in our back yard. I was about half way through, and I noticed a beer bottle under the bushes. Normally, I’d have been WAY too lazy to bend over and pick it up, but I didn’t want to risk running over it with the lawn mower in the future, so I picked it up and threw it in the recycling bin in the garage. Now, on any other day of the year, this story would have ended boringly right there and then. BUT, the recycling bin was empty……..completely empty. So, the next day, when Rebecca went to take out the collection of bottles from the kitchen that had accumulated, she immediately was drawn to the lone beer bottle, lying in the bottom of the bin. Now, Rebecca knows that I don’t drink beer regularly. Actually, I probably have one about every 2 or 3 years. BUT, I had a poker party with some friends about 2 years ago, and I bought a case of beers. So, we still had about 10 or so in the garage refrigerator. Rebecca grabbed the lone bottle and took it over to the refrigerator and compared it. It had the same born on date and lot numbers from the remaining bottles that were two years old. Now, we’re no CSI agents or anything, but I took probabilities and statistics in college, and I’m pretty good with numbers. So, what are the odds that a neighbor, bought some beers about 2 years ago when we did, with the same lot numbers and born on dates, and then waited 2 years to drink one of them, and then threw it into our back yard? (Not too good of odds I’m guessing.)
So, during dinner we questioned young Zachary about said beer bottle. I learned something interesting; denial is not just a river in Egypt. He immediately denied any knowledge of the beer. Now, it is probably important to mention that the night before, we had a long conversation with Zachary about owning up to his mistakes and living with the consequences. He agreed that he needed to start “manning up” and taking ownership for his actions. I reminded him of his promise to “man up,” and he still denied any knowledge of the beer bottle. So, I chose a different tactic, one I like to call “displacement blame theory.” This is a tricky theory that should only be used by the most savvy of parents; it is NOT for the feint of heart. This is what I said: “Well, I believe you. You agreed last night to own up to your mistakes, and if you say that you don’t know anything about the bottle, then I trust you. However, there are only three individuals that have been in this house in the past two weeks that could have taken a bottle of beer. All three are your best three friends. So, they are now banned from this house for being thieves and liars.” [Zachary’ response] “Wait, they didn’t do it, you can’t blame them, that isn’t fair.” [Me] “Oh but sure it is, you are now trustworthy and owning up to your sins, so we TRUST you, but your friends, they must be bad apples.” [Zachary] “Wait, OK, wait. I did say that I would man up and admit when I made a mistake, so I guess you got me. The bottle is mine. I stole it, drank it, and threw it in the back yard. And as long as I’m telling the truth, there are two more empty ones in my room hidden, that I haven’t gotten rid of yet.” (He then proceeded to retrieve the remaining two bottles.) This whole episode was beyond disturbing. I know that teenagers will experiment with alcohol and try crazy things, but he is on SO many medicines that can have a dangerous reaction to alcohol, and this really scared us. He claims that he didn’t like the experience, and that he could have taken more, but decided that it wasn’t for him.
I have to admit, that the most difficult email that I’ve ever written followed that episode. I had to inform his doctor in Philly about his actions. I knew that I would be risking them not only taking Zachary off of his chemo, but also not allowing him to participate in any of their other studies. The problem is this, these doctors rely on their patients to “play ball.” Zachary is having way too many complications to be gambling with mixing alcohol into the chemo game. We were lucky. The doctor is allowing him to continue on the medicines as long as the indiscretions stop. (They are also watching his pain very closely. If he has pain at any levels near what he has had during the past two rounds, then we are officially off of this protocol and moving forward with another.)
So that was the “beer episode.”
The other “fun” story from this past weekend came when Zachary got in trouble for talking on his cell phone late one night. Rebecca went online to check his cell phone bill, to see how many late nights he was violating the privilege of a cell phone, and guess what we found? A pending bill for $682.00!!!!!!!! (If you heard screaming the other night, it was probably me.) Between the beer incident and the phone bill, I’m guessing that my blood pressure is NOT within safe limits. We have learned that the most effective tool in punishing Zachary is taking away his cell phone. So, we took away his cell phone. So, once again, my CSI wife was snooping through his phone and discovered that he was getting and sending text messages to a certain girl over and over again. Now, normally this wouldn’t have been a big deal, but some of the content was of questionable origin. (Meaning that 13 year olds shouldn’t be using some of the words that they were using.) Well, when she tried to delete the messages, there was a problem. Zachary had installed a “lock code” on his phone. This particular phone uses a four digit lock code. I asked young Zachary about his code and he pled ignorance. I informed him that if we didn’t get the lock code, he would NEVER get his phone back. He stood firm with his assertion that he couldn’t remember it, and said he was more than willing to help figure it out. I passed on his offer and started to think about how long it would take to crack the code. Now, at face value, there are 10,000 code variations when dealing with a 4 digit code. That is the bad news. The good news is that young Zachary likes codes that translate into words, using the letters on the keys to form the words. So, there are no letters on the 1 or the 0 keys. That immediately eliminates 2,000 of the 10,000 variations. Then, each thousand after that can have the first 200 codes eliminated, (2001 – 2199.) Then, you can further eliminate all other codes using 1’s and 0’s, like 2220, 2221. So once you narrow down the field this way, you are left with about 4,624 possible codes. I started with some of the “obvious” words that Zachary told me to try, all to no avail. So, Sunday night, around 5pm, I began at #2,222. The lowest code that doesn’t use a 1 or a 0. I worked at it for about an hour or so, and then the next morning I continued until I got to 5,683, which translates into the word, “LOVE.” And BINGO, I had his code.
If there is any lesson for young Zachary in all of this, I would imagine that it is this: No matter how tricky you are, no matter how conniving you think you can be, you are up against mother’s intuition, and a stubborn minded statistically thinking robot that will NOT quit until he solves the puzzle, WHATEVER the puzzle is!
“You can fool some of the people all of the time, and all of the people some of the time, but you can’t fool mom!”
The messages got deleted.
The remaining beer bottles got emptied and thrown away.
The cell phone remains in our custody.
Zachary remains grounded.
He sold a bunch of his prized video games to pay back about $100.00 to us.
He worked yesterday and today to earn money to pay back some more.
Teenagers!
Scott
P.S. For Sale! One slightly used teenager. Doesn’t listen, talks back, won’t clean his room, doesn’t like to shower. Will trade for boat or good dog.
Wednesday, August 1, 2007 8:04 PM CDT
Well…..I was NOT going to update tonight, but Darlene’s “We needs the precious” reference from Lord of the Rings in the guest book got me laughing…..so I figured….what the heck?
I’m thinking that to SOMEWHAT protect the innocent; I will use innuendo and analogies to avoid totally throwing young Zachary under the bus.
So…….let’s just say that a good friend of mine called me the other day, and was relaying to me how his wife was cleaning out their 13 year old son’s room while he was sleeping in the other room, passed out from the neurontin that he is taking to combat the painful side-effects of the experimental chemo that he is taking for his neuroblastoma. (All of that part about the neurontin, chemo, and neuroblastoma is PURELY coincidental…..this is NOT Zachary that I am referring to.)
So anyways……….she was cleaning out his room, and came across some interesting articles of contraband. Among those articles were the following:
Two cigarette lighters
Three pocket knives
One magazine of questionable content (Hmmmmm…maybe that wasn’t obvious enough of a clue. Perhaps there is something that I could reference that would further enlighten you as to WHICH magazine of questionably content was discovered. Perhaps I could infer that the name of said magazine could also be used to describe a person that “cons” people at the game of pool…….OR, I could say that the name is often used when referring to a person that is very active at their job, or always on the go…………..or, for you older folks, there was a dance in the 1970’s that had the singular form of this word as it’s name.) (Are any of you women out there blushing yet?)
Ok….so that was the contraband……………next came the confrontation.
At this point in the story, I would like to say that my “friend” is somewhat of a logical minded individual. That is to say, he is like an attorney, in that he will use other’s words against them in a discussion or argument…..so 13 year old boys are deeply disadvantaged when it comes to arguing about what is right, and what is wrong.
Well, this particular 13 year old was called into his parent’s room to discuss the various items. First up were the lighters. His story was that while hanging out with some friends, he was given the two lighters by some boys that were smoking cigarettes. He admits to having tried one (which means more than one), but claims that he did NOT like it, and won’t do it again. At this point in the “discussion”, he was informed by me…..I mean by my friend, that aside from the obvious health risks that accompany smoking cigarettes, he is on WAY too many medications that do not go well with smoking to be gambling like that.
Next up were the pocket knives. Once again, logic was thrown out of the window…….he claimed that he was threatened by some other kid or kids in the neighborhood and wanted them for protection. When asked where and when this happened, (because this boy is almost never out of his parent’s sight), the boy in question claimed that while hanging outside near where his mother works, some boys threatened him. I then informed him….I mean his DAD informed him, that he is not allowed to be outside when with her at work…..if the wrong element is hanging around out there, you remove yourself from the environment. He didn’t like this…..his contention is that he still needs protection. He also claims that one of the kids claimed to have a gun that he carries, and that is why he needs to have a knife.
Logic 101: If you carry a knife to a gunfight, one of two things will happen. #1). The boy carrying the gun will pull it out and shoot you before you can get your knife out…and you will be dead. #2). You will pull your knife out before he pulls his gun out, and you will stab him….he will then die, and you will spend the rest of your life in jail.
I do NOT see how either of these two choices have good futures in them………….but trying to instill logic into a 13 year old that knows everything, is like trying to sweep egg yolks with a broom. You might THINK that you’re making progress, but in the end, you’re just spreading the mess around. The knives were confiscated along with the lighters and disposed of accordingly.
Now…that brings us to the magazine. The young man in question claims that an adult bought it for him when he went into a local beverage/quickie mart. (That is disturbing on a WHOLE range of levels.) Let us start with talking to strangers…..and work our way from there……
The magazine in question was dated 7/07, so it had just come out, which means he didn’t have it for long. When asked about it, he claimed that no one else had seen it, that it was kept hidden in his room for his “personal” use…………………….I would suggest using your imagination to ascertain what “personal” use means…….but some of you have warped imaginations….so I’ll just say this………I was 13 once also….it didn’t take me too long to decipher what he was inferring. (I mean, it didn’t take HIS dad too long to decipher what HE was referring to.) I had “access” to magazines when I was young, I found a way to get them too…..BUT, they weren’t magazines of THAT caliber. That particular magazine, for those of you that live in a cave, is probably being used in medical schools to properly show how to give gynecological exams….because it does NOT leave much to the imagination. There is WAY too much adult stuff going on in THAT particular magazine for a 13 year old to be looking at it.
So…what is the answer?……….you can’t rewind the clock and pretend it didn’t happen……….but you can’t condone that kind of literature either. One suggestion was made to this couple by friends…….that they should get the “tamest” magazine out there, (Playboy), and make the compromise so that this young man doesn’t totally rebel against his parents, and is kept somewhat in “check.”
This young man already has the books for children that discuss their bodies, and growing up, but because of “exposure” to more mature themed literature, he is not content with those “younger” books anymore.
So there you have it…….not too much fun there for THAT family……I’m just glad it isn’t us!!!
Now onto something completely unrelated to THAT mess.
Do any of you watch videos on Youtube? I happened upon the video from the TV show “Britain’s God Talent.” I guess it is the British version of “American Idol.” Simon Cowell is one of the three judges, and it looks similar to our show, only the contestants can show off any talent…not just singing. Anyhow, the video in question is of this guy Paul Potts (you can search his name on that site). This guy is (was) a car phone salesman from Wales. He walks out onto the stage…….looks a little bit pudgy, has teeth that are crooked beyond reason, is wearing a frumpy suit, and looks like he couldn’t carry a tune if it were in a bag. They ask him what he is going to do for his talent, and his reply is, “I’m here to sing opera.” Well….Simon and the other male judge roll their eyes and look at each other as if to say, “You’ve GOT to be kidding me.” They signal for him to begin, and what happens next is amazing. Mr. Potts just happens to have one of the most amazing voices that you will EVER hear. The audience goes berserk for this guy. He ends up advancing through the various rounds and a month or so later wins the entire competition. (You can watch his semi-final and final appearances there on Youtube…they are wonderful.) After the contest ended, he came to the USA to be on the Today show and some other morning shows…..and then returned to Britain to record his first album. It came out yesterday, and Rebecca got if for me……….(I’ve probably watched his videos about 50 or so times……..and if you go to watch them, you will see that they have been viewed over 10,000,000 times.)
He sings a couple of opera songs, a song from Phantom of the Opera, and the song “You Raise Me Up”, that Josh Groban made popular.
If you want to hear them online, I found the songs at a site called:
www.fmtune.com
When you get there, you can search the album “One Chance” and the songs are there to be heard………..this guy has an amazing voice. (Probably not the music of choice for most of my readers, but if you watch the videos, you can’t help but root for this “common” guy that has made it to the big time.
Scott
Saturday, July 28, 2007 12:58 AM CDT
Boo Hoo……there hasn’t been an update in a week……Boo Hoo.
(Cry babies)
You would think that I’m supplying you with some sort of addictive drug that I have suddenly stopped giving to you.
(Not a bad analogy……..now that I think about it.)
(Maybe I’ll write the next year’s worth of journal entries in a book, and make you buy it at Barnes & Nobles…..or Borders…….[insert evil laugh]).
Ok….Ok…….this round of chemo ended yesterday……so far, no major problems….(Kaynahorah, ptuii, ptuii, ptuii…..)…(I’m starting to REALLY believe in that word….and the spitting too.) Zachary was out of his wheel chair from Monday until Thursday. On Thursday he started to have pain in his left foot, so it has been difficult for him to walk. Now, before you get all…..teary-eyed or sympathetic for young Zachary, let me explain further. He is having NO nerve pain….or drug related pain at all!!! On Thursday, he was with Rebecca at the bowling alley, and was walking around, listening to the music…….so of course, he started to dance and hop around……and he landed wrong on his left foot, probably spraining it…….the pain is inner bone-like pain….NOT outer nerve-like pain. We emailed the doctor in Philly….and she agrees.
As for his bathroom successes or failures….we have done well so far keeping him……well……..”on the move.” We are still closely monitoring those exploits……in the hopes of avoiding a catastrophe again.
Other than that, things have been pretty normal around here.
(Actually….that is a lie….a BLATANT lie……….).
I’m just torn as to how much detail of Zachary’s latest exploits I want to share with the world…………let me think about it for a couple of days……..remind me in the guest book that I teased you, and I’m sure I’ll find a way to convey to you some of what he has done, without totally compromising his privacy.
Scott
Sunday, July 22, 2007 1:10 PM CDT
We are officially back on the new chemo.
Zachary started taking it again yesterday morning.
He is on ALL sorts of preventative medicines to keep his bowels moving.
If he has ANY increase in pain in his feet, we are to stop the drug immediately and call Philly.
So far…..no hiccups.
(Kaynahorah…..ptuii, ptuii, ptuii.)
Scott
Wednesday, July 18, 2007 8:58 PM CDT
You want an update……YOU CAN’T HANDLE AN UPDATE!
(I couldn’t resist the “A Few Good Men” reference.)
Well…..I can give you an update…….but I am warning you now that there is definitely going to be some pieces to the puzzle that you will NOT get tonight……tomorrow is D-Day.
BUT….you’ve cried like little babies for an update….so you’ll get one.
Zachary has been walking and standing more and more each day. He is still using the wheel chair for longer distances, like around the mall, but around the house, he is showing improvement. I spoke with his Philly doctor yesterday, and she wants to see at least 51% non-wheel chair mobility. I believe that we are there, but tomorrow we return to the local oncologist’s office for a professional evaluation.
Our Philly doctor asked about Zachary’s pain, and when I explained that he has conveyed how the pain is intense when he first stands up or puts pressure on his feet, and then slowly, as he walks, it becomes more tolerable. She said that this is exactly how this neuropathy presents. It can take a huge psychological toll on the patient, because they have to somehow get over that MASSIVE hurdle of forcing themselves to endure a “known” pain, to get to an “unknown” area, of reduced pain after some time. She is convinced that his pain will not be with him long term, and that he has not gotten any permanent nerve damage. But, the doctors up there are very conscience of Zachary’s quality of life, and they want to make sure that we can avoid these side-effects in the future.
There was another interesting development from our conversation yesterday. I had asked about the possibility of getting a certain Phase I drug on a compassionate basis if the pain issues weren’t resolved enough to allow for us to continue on the current chemo. The reason for this request was simple…..we feel that Zachary has been “beaten” up pretty badly over the past few weeks, and we are concerned that if we had to switch treatments, and go to the MIBG therapy, we would be knocking his immune system WAY down, possible far enough to require stem cell recovery. So, we were thinking that a hiatus from the heavier chemo-like agents might be a good idea. Our doctor said that her team has been talking about Zachary and discussing options………they feel that because his disease has presented itself as more of an indolent disease than an aggressive disease, that he could benefit from the lower dosage MIBG therapy that they have been perfecting lately. That treatment would only require a one day treatment, every six weeks. AND, it is much less likely to have any severe side-effects, like the need for stem cell recovery. In fact, his counts would probably not be knocked down too much at all. Originally, they were discussing giving him the one week MIBG therapy, which would have been very harsh on his system.
So, having heard of this back up plan, we are much more at ease with the knowledge that we may be at or near the end of our run with this current chemo. Having a backup plan makes getting through the day much, much easier.
So, tomorrow we will know what the final decision is. Our local doctor will examine Zachary and then communicate with the Philly doctor, and then we will know what we are doing.
Other than that, the only other news from today of interest was the phone call that I got while trying to eat dinner. Rebecca wrote down on a sheet of paper that Cigna was on the phone.
Here is the actual transcript from that call:
“Hello, this is Scott Finestone.”
“Hi Mr. Finestone, this is Ms. Dipshit from Cigna.” (OK…her actual name was probably NOT Ms. Dipshit, but I have changed her name to protect her from anyone out there that might not like the nature of the phone call.)
“Yes…….Ms. Dipshit….what can I do for you?”
“Well, I spoke with you on 7/2/07, you called about a claim that had not been paid in full, do you remember this?”
[Sidebar] OK……just to explain……after our initial trip to Philly, we got a bill from the hospital saying that Cigna had only paid about 65% of the bill, and that the other $1,200.00 or so was on us! The reason for the denial of full benefits was, “No prior approval.” I called them on 7/2/07 and explained that we were given no other options other than Philly and that my son’s disease required us to get there quickly……..at that time, she informed me that it was not a problem and that they would resubmit the claim for further payment.
[Back to Ms. Dipshit.]
“Yes, I remember speaking you.”
“Well, we’ve reviewed the bill and found that we paid the correct amount, and that any other portion that remains is your responsibility.”
“My responsibility? What is the reason for this.”
“Well, it says here in the notes that because the injury was from a work-related incident, we are only going to pay the portion that we already paid.”
“A work related injury you say? Are you kidding me?”
(Actually at this point in the conversation, I don’t remember a whole lot…..I may have been screaming…..I know that blood was shooting out of my ears, and that I may have actually growled at her over the phone……I’m not too sure.)
“An injury? How exactly did my 13 year old cancer patient son get a work-related injury when he does NOT work, and has been a cancer patient for over 7 years?”
“Well….I’m just reading from the notes…..it LOOKS like they have indicated that it was a work-related injury……I’m not sure what this abbreviation means.”
“Well……..I need to know what is going on here, because in 7 years, we have always met our out of pocket responsibility by the second or third week of January……and the rest of the year is on YOU.”
“Sir, I am going by the notes here, and they read that this is a comprehensive policy, not a PPO policy……..do you know what your coverage is as the insured parent?”
“Ahhhh……yeah……….I’m NOT the insured parent…..Zachary has a conversion policy….the same policy that he has had for several years….he is self-insured….as he has ALWAYS been.”
“Well………this comprehensive notation seems to indicate that we have paid our portion correctly.”
“OK…..well….how about you look again, because we have been to NYC three times, our local hospital numerous times, and to Ft. Myers about four times for this same scan…..so how come, all of a sudden, you are changing your requirements for approval on this scan? We need this scan….WHEN WE NEED IT……to keep him on the correct protocol……..”
“Oh….wait………I should have read further in the notes….it says here that on 7/5/07 we made an additional payment. The bill was paid in full at the entire contract price….there is no amount due by the insured party……….sorry.”
“………………” (Yeah…I was speechless….go figure.)
“Mr. Finestone….are you there?”
“………………” (Still speechless.)
“Mr. Finestone….I can give you a confirmation number that you can pass along to the provider if they need proof that we paid the balance…..do you have a pen?”
“……………….” (Stunned silence….shock…….high blood pressure…….you name it.)
“Are you ready to take down that number?”
“Yes…..please give me that number Ms. Dipshit….and THANK you for ruining yet ANOTHER one of what is SURE to be my last days on this Earth.”
Scott
P.S. Oh…by the way……that entire script……was basically word for word………I may have embellished a little bit there at the end, but that is EXACTLY what happened.
Saturday, July 14, 2007 4:37 PM CDT
I know that I just updated the other day…and gave you all news about what is going on……but I forgot one aspect of the story.
So….if you have NOT read the last journal entry, then you need to go back and do that now…before you read any further.
(Not there is going to be a lot to write about…..but this next part really hit home.)
While we were meeting with the oncologist in Philly, she asked Zachary about the pain in his feet….to get an idea of how intense it was…..his comment to her was as follows:
“I don’t care if I never walk again….just make the pain go away!”
Now…coming from a kid that played soccer on two teams within the past year……and a kid that was water skiing two weeks ago, I’d say that was a pretty powerful statement.
We spoke with the doctor yesterday afternoon, and they had us up the dose by about 50% since he has been tolerating it well. Today, he woke up….and then slept most of the day…..so it seems that he definitely has the drug in his system now. He did stand up this morning, to show that he can do that for short periods of time. We have been instructed to keep him at this higher dosage until tomorrow night…and then we raise the levels again. So, hopefully we will see more improvement….to the point where he can stand, and walk short distances….that way we will be eligible to continue on with the chemo.
Scott
Thursday, July 12, 2007 4:27 PM CDT
Somehow our lives have become inexplicably intertwined with the age old battle between good and evil.
I have written about this before, but it never stops amazing me how we simple can’t seem to get GOOD news, without BAD news being attached to it.
And what makes it worse, is the only way that I could come up with for describing this never-ending scenario is this……”The fact that we are constantly being faced with GOOD & BAD news together, can be characterized as…..well……..Good news and Bad news.”
The good news is that we are consistently getting GOOD news.
The bad news is that we are consistently getting BAD news.
(Is your head spinning yet…mine is…..we didn’t get home from Philly last night until 1:25am.)
OK………I’ve stalled enough….so here goes…..and please try to keep up, because I am in NO mood to have to review this stuff with any of you slackers.
The Good News:
Even though Zachary has only had two rounds of this new chemo (ABT-751), he has already shown great improvement in his scans. His MIBG scan from yesterday showed almost total improvement on the lesions in the skull. The spine also showed great improvement, and the “hot” spot in his hip remained stable. The doctor informed us that they don’t usually see improvement this quickly.
(Wouldn’t it be nice if I could just end the journal entry here…and not type anything else? Wouldn’t that be great?)
The Bad News:
Zachary’s pain issues with his feet are a very real problem. The doctors will NOT administer anymore of this drug unless and until they see this pain being resolved. They started him on neurontin last night, and they called in a script for it so that we can continue it here at home. They are giving us 7 days to find great improvement. They want him standing and walking by next Wednesday!!! If he has not shown improvement by then, then we are no longer eligible for this drug. (Oh….and it gets better….NOT) Because of the pain, he would not be eligible for any other phase I or phase II study, because any of those would require that side-effects from previous studies be resolved before starting their protocol.
Here is what they believe occurred:
When Zachary got the ballistic constipation, his body was unable to rid itself of this new chemo. (Normally, the side-effects that are experienced by the kids on this drug are seen on the first round, and then are no worse after that.) Because Zachary had that horrible constipation, he probably encountered a toxic reaction to this drug, which led to the peripheral neuropathy, (pain in the feet.) The other interesting fact that we learned is that the few kids that have had harsh side effects from this drug, showed the most improvement while on it. (Another hysterical twist of irony.) So, they REALLY want us to get relief from this pain, so that he can continue to receive a benefit from the drug.
If we are unable to find improvement with the pain issues by Wednesday, then they have one other option that they are offering us. The MIBG therapy that they “perfected” up there at CHOP. As you already know, (or should know, since I’ve written about it like a billion times,) Zachary’s scan is an MIBG scan. The reason they use that isotope is because it attaches itself to the cancer cells and appears on the “film.” Well, years ago, they figured out that they could give much higher doses of the MIBG isotope and have it attach and destroy cancer cells. The down side to this treatment is that it can be VERY hard on the bodies system. They require that the patient have backup bone marrow stem cells in storage in case the marrow stops working altogether.
Zachary does have an abundance of cells stored up in Gainesville from his transplant 7 years ago….so that is no problem. The only numbers that I’ve gotten so far on this are as follows. About 1/3 of the kids that do this treatment end up needing stem cell recovery. And most of those are kids that already had weakened immune systems or disease in their marrow. Zachary has a strong marrow with no disease, so those two facts are working in his favor.
If we DO indeed need to switch to this therapy, it would require a week long stay in Philly, in-patient, followed by six weeks at home. It is likely that during those six weeks Zachary would require a transfusion or two or three……you never know. After the six weeks, they reevaluate him and I believe at that point, they consider giving him another round of therapy. I do not think that they do more than two rounds. Although, the doctor did mention that some of the kids like Zachary, that have been able to keep the disease at bay for a number of years, have been finding some success receiving lower dosage amounts of MIBG therapy to “keep the disease at bay.” So, I guess there is the possibility that we might be able to go that route as well……down the road.
Now, before anyone asks about the “one week deadline,” I never really asked a direct question about that, but my understanding of the situation is this……..because we are participating in a study, they can’t have a child go too long off of treatment, and then return to the drug. It could mess up their numbers…….not knowing how much of a response he actually received….if the disease were to rebound……if that makes any sense.
So…there it is……we are working now to get young Zachary back onto his feet……and we need some REAL progress towards those ends by Wednesday!!!
Scott
Saturday, July 7, 2007 9:47 AM CDT
WOW……look at all of those guest book entries……(guilt is a wonderful tool….when used with caution.) I guess I can’t wield that weapon too often….it will get old…..quickly.
Thank you to those of you that offered ideas and comments regarding Zachary’s new pain issues. YES…we were aware that the pain meds can exasperate the constipation issues….but we are battling something that is new to us…..and not easily defeated. The enemy has a name…and it is:
Peripheral Neuropathy
You can Google it….or look it up on WebMD….either way, you’ll find some NOT so nice information about this condition. Zachary’s pain has increased to the point where I had to get a wheel chair. I rented one the other day…..to make him more comfortable when getting around. He was literally crawling on the floor to get to the bathroom. It is really bizarre….this new pain. He can lay in bed…watching TV, or playing video games, and not have any apparent pain or discomfort…..but when he sits up, or has to move around….things get bad. I don’t know enough about this problem yet….but it looks like once he gets blood flowing to the extremities, the pain shows up…..and a STRONG way. He has been trying the “hard” meds to fight the pain, but he claims that it hasn’t helped…and that he doesn’t want to take anymore of it. We will be in Philly Tuesday and Wednesday of next week, so this will be one of our primary issues that we address with the doctors there. By Wednesday afternoon, we expect to have the results of the MIBG scan that we will do in the morning, so we’ll know if they believe the new chemo is working or not.
If it isn’t working, then dealing with this new drug won’t be the problem. The problem will be; A). Getting rid of this pain. And B). Finding a new drug to fight the cancer.
If it IS working, then we have to find a way to combat the horrible side effects that he has been experiencing.
Either way, we are in for a long haul here………….not that we ever expected this to be easy, but a LITTLE break in the excitement would have been nice.
Scott
Wednesday, July 4, 2007 10:48 AM CDT
5 years
1 month
7 days
3 hours
32 minutes ago……………..I started writing journal entries.
……and after all of that time…..we have hit the 500,000 hit mark on Zachary’s page. Now….normally that would be some sort of milestone……but you have to factor in the 493,887 times that Rebecca and I have clicked onto this page to check the guest book in the REMOTE chance that some lurker out there actually took 20 seconds of their precious time to leave us a message.
(Did that come across as bitter or scorned? Ooops.)
Thank you to everyone that has checked in on us over the past 5 years………1/2 million hits is amazing…..even IF Rebecca and I make up the majority of them!!! We appreciate the concern, the thoughts, and the prayers.
Now on to medical news……such as it is.
When I wrote that last journal update, I didn’t mention that Zachary started to experience some foot pain while we were driving home. I really didn’t put a whole lot of thought into it, because he had been in bed sick for over a week, and then he got back to the vacation house and was skiing, tubing, swimming, etc. So, I figured that maybe he just over did it a little bit.
Well……….the pain in his feet has worsened….and he has started to experience some pain in his hands as well. Those of you out there in Cancertown may recognize these symptoms as classic side effects to a drug called vincristine.
Here are some fun facts about vincristine:
“Vincristine may also affect the nerves in the intestines, causing gut movement to slow down. This effect can result in constipation, which in some cases may become serious.”
“This medication commonly affects the nerves and muscles in your body. Most of these side effects go away after this medication is stopped, however some effects may persist for a long time. Tell your doctor immediately if any of these serious side effects occur: painful/difficult urination, change in the amount of urine, pain (e.g., in the joints, back, muscles, jaw), numbness/tingling/pain of the arms/legs, weakness, difficulty walking, loss of coordination/balance, inability to move your muscles (e.g., muscles of the face, other parts of your body), drooping eyelids, hoarseness, trouble speaking, mental/mood changes (e.g., depression, hallucinations, confusion).”
If you have been paying attention to my recent journal entries, you will notice that the constipation and the pain in the extremeties are sounding familiar. Well….this is no coincidence. Vincristine is in the same family of chemotherapies as the experimental drug that we are now giving Zachary. That is why the intestinal thing is so dangerous. This pain in the feet and hands is new to us. AND it is coming WAY late in the round of chemo…..we are technically supposed to be starting our next round today…but with the holiday, we had to postpone it for a week. The other “scare” that we had yesterday came from his most recent blood work. His platelets were about 600,000! Now…..I’m no platelet expert by any means….but in seven years of playing parent/doctor/cancer treater…….I have never seen his platelets go over 400,000! Apparently, whatever infection we were fighting up in Knoxville could have caused this to happen. When the body is fighting an infection, the bone marrow can go into overdrive to compensate and after the infection is gone, and the other counts are returning to normal…the platelet count can have a “late” skyrocket” effect. The doctor said not to worry about this……she saw no concern for clots….and said even if it hit 1,000,000, she wouldn’t want us to panic.
(My main disappointment came from the knowledge that he got his platelet count over 600,000 in a little under a week…..and you sorry lurkers could barely get his page hit count to 500,000 in just over 5 years…..pitiful!)
Did I say that out loud?......Oh that’s right….I put it in parenthases, so it’s like I was just “thinking” it to myself…..so no one will read that or get offended…..cool.
So…back to the pain…..the doctor suggested Tylenol around the clock……which has not been working so far…..and after that, she said to have our local oncologist prescribe Oxycotin. (CRAP…I hate giving them hard drugs.) As luck….(bad or good….you choose) would have it…..we still have some Oxycotin from a previsous bout with some pain issue that he had within the last few months or so…..so we gave him half of one of those….and hopfully he will get some relief.
Other than that…..things are quiet around here. We are being lazy today….hanging around the house….I did yard work all morning, Rebecca has been doing laundry, (in a feigned attempt to get caught up from vacation), and Zachary has been laying around, playing some video games. We may go over to a friends house here in the neighborhood and swim are barbecue…if Zachary feels up to it.
I hope everyone has a safe and enjoyable Fourth of July.
Scott
Sunday, July 1, 2007 3:06 PM CDT
In my defense, I was anxious to get back to vacation….so, updating the web page with news of our departure and Zachary’s recovery, were NOT at the top of my list of things to do.
I apologize for the lapse in information………when we left the vacation spot and returned to cell phone coverage, Rebecca had two messages from friends, asking if we ever made it out of the hospital.
My bad!
BUT….in my defense again……one would think that a logical minded person would have deduced the following:
1). If we were not answering our cell phones or returning messages, then more than likely, we had returned to an area that did NOT have cell phone coverage….which would mean that we had returned to our vacation.
2). If someone were so inclined, they could have called the hospital, (While I did not include the name in my journal entry, there is only one children’s hospital in Knoxville), and asked for a patient by the name of Zachary Finestone.
3). Well….actually…there is no #3…….but the point is…… I guess the point is………I screwed up…..and forgot to update everyone…..THERE….are you happy……I took responsibility for my actions!
We ended up spending two nights in the WONDERFUL E. Tennessee Children’s Hospital. We got released on Wednesday around 2pm….and made it back to our vacation at about 3:30pm. We ended up having 2 full days of fun in the sun…….so it wasn’t a total bust. Zachary got to water ski, tube, swim, and enjoy some quality time with his cousins.
We are now home, for a whole week…..before we return to Philadelphia for two days of testing. I’m sure the doctors there will have some stern words for us about our little adventure. I’m guessing that there will be a MUCH more rigid medicinal schedule for Zachary once we start this next round of chemo.
Scott
Tuesday, June 26, 2007 12:09 AM CDT
There is good news and bad news……and interestingly enough, they are the same….
The good news is that we now have cell phone coverage.
The bad news is that we now have cell phone coverage.
I have always found that when removing a band-aid, the quick rip approach is much better than the slow tortuous approach. So, in keeping with that mindset, here is the band-aid being ripped off.
The ambulance ride from the local county hospital to the children’s hospital in Knoxville was not too bad yesterday!
There……now, you’ve got at least a inkling of what our vacation has been like. Between the update where I wrote about our first emergency room visit, and this one……you should be good to go!
NO?
Why not?
Not enough details for you addicted lurkers?
OK…….more details then.
I believe I left off after our initial hospital visit……we got through that night, and during the day Sunday, Zachary was still producing poop. He remained tired, dizzy, and without an appetite. Monday, things changed a bit for us. He did eat some Jell-O in the morning, but after that things deteriorated. He never did get going with enough fluids……and by lunch, he had developed a fever of 102 F.
I made some calls to the oncologist in Philly, and it was decided that he needed to be seen by a doctor. They were guessing that he needed fluids, and possibly IV antibiotics. Zachary and I headed over to the same emergency room and luckily they weren’t too busy at first, so we were back into a room by 1:45pm. Unfortunately, they did get real busy…….but the doctor put Zachary on oxygen right away, because of his shortness of breath, and his oxygen stats were low. They checked his blook counts, and the big shocker came in the WBC.....it was 10,000. That is like double or triple normal for young Zachary. Counts that high are usually an indication of an infection. So more pieces of the puzzle were falling into place. By 4:00pm, the E.R. doctor was able to get a hold of our doctor in Philly, and a decision was made to transfer Zachary by ambulance to the children’s hospital in Knoxville…which is about 45 minutes away from the one near where we were staying. I called Rebecca, and my folks brought her to me at the E.R. with a suitcase and enough supplies to get us down to Knoxville for a few days. Before we left, they started Zachary on an IV of fluids, and got him some IV antibiotics. Once that was done, he was loaded up into the ambulance. Rebecca rode in the front, and I followed in our truck.
Once we arrived at the children’s hospital in Knoxville, it became apparent that we were where we needed to be. The Oxygen had stabilized his levels, and the fluids had helped, but he needed to be at a facility that catered to children. (For the record, the local E.R. where we were staying was wonderful. They were caring, thoughtful, and a few of the nurses even asked us to keep them posted as to how we fared over the next couple of days.)
The hospital here in Knoxville has an oncology unit. So today (Tuesday) we got to see the oncologist and an infectious disease doctor. Everyone here has been VERY nice to us. They gave us a room on the pediatric floor that has two beds for patients, and a day bed that is about the size of a full bed. (They don’t double up on oncology kids here, so we have the entire room for the three of us.) This helped us avoid having to find a hotel locally.
We stayed in the E.R. until 10:00pm last night when they informed us that we would be staying the night.
(I hadn’t realized that there was ever another option, although, right before telling us that we were staying, the one nurse mentioned that they were considering transferring us to Philly.)
(HOLY CRAP!…..does that mean they were going to get an air ambulance?….I don’t know……..but there was no way we were going to drive him that far in an ambulance.)
Anyways……we made it to the floor at about 10:30pm. We met our nurse, went through our medical history for the third time that day….and finally got to bed at about 11:45pm. This morning, the oncologist came in early (8:00am) and we went through the entire history again. They have been drawing labs and waiting for results from the other E.R. to see if anything is growing in his blood. Meanwhile, he has been improving….possibly from the IV antibiotics. About an hour or so ago, we got to meet the pediatric infectious disease doctor….and she was very nice as well. We once again had to go through the entire history of his illness, along with the events that brought us to where we are today…..but I’m not complaining….thoroughness is a GOOD thing!
So….here we are in a hospital in Knoxville……about an hour or so away from where my entire family is vacationing…..about 11 hours away from home……about……I don’t know….8 or 9 hours away from Philly…………..getting fluids, getting more antibiotics, and hoping that Zachary will get through this without any problems. And if that can happen within a day or so, then he might actually get to enjoy one or two days of vacation.
I’m sure that if this was happening on or about April 1st, some of you would be thinking that I had made all of this up…..well, I might be good….you know….at writing stories….but I couldn’t make THIS up……..I’m not THAT good.
Scott
Sunday, June 24, 2007 1:31 PM CDT
The word of the day is:
Gamble (gam*ble) [gam*buhl] – To play at any game of chance for money or any other stakes. To take a chance on; venture; risk. Any matter or thing involving risk or hazardous uncertainty.
You’ve seen this before…….me defining a word….and then there being a real life involvement with that word……and us. Well…..why should today be any different?
In my last entry, I explained (with glee), that Zachary had started to move his otherwise occupied and unmoving bowels. We were filled with excitement, both because we believed that young Zachary was going to finally find relief from his intestinal discomfort, and because we could go on our trip.
Unfortunately, Zachary has a difficult time riding in cars…..especially for long trips….and doubly especially when he is not feeling well. So we already had a couple of huge strikes against us. That was where the Benadryl came in……it appeared to be our knight in shining armor. But, as it turned out, it was really a wolf…..in sheep’s clothing.
Zachary’s belly problems continued while we were on the road. We stopped frequently for him, but when he was not sleeping, he was not happy. We ended up making it to just shy of Macon, Georgia on Friday evening…..and we gave him some more of the medicine that the doctor had prescribed…….he was in and out of the bathroom all night, STILL producing movements. (If Beethoven had produced this many movements, he’d have been famous…….oh yeah….he was famous……where was I?)
Oh yeah…..movements. Well……every time he came out of the bathroom, I was convinced that he had finally emptied his belly of evil doers. Well, when I am wrong…I am REALLY wrong.
The gamble that I referred to earlier was leaving town in the first place. Of course, we weighed the risks of leaving town with him not feeling 100%, but we never felt that he was in any real distress. He was drinking, peeing, and was able to walk, talk, etc.
We made it into town Saturday around 2:30pm, after many, many stops during the last 4 hours of the trip. By this point, Zachary was not feeling well at all. His belly was STILL feeling like he had to go to the bathroom, and was NOT getting any results. My dad looked some things up on his PDA, (Physician’s Desk Reference), and found for us this little tidbit of information…..Benadryl has in interesting side effect….it can cause constipation. (Oh CRAP!)……or actually….Oh NO CRAP!
We were robbing Peter to pay Paul…..and failing miserably at it. While we were making him comfortable for the car ride, we were reversing the effects of the medicines that were trying to restart his intestinal tract.
By Saturday at dinner time, Zachary decided to up the stakes in our little drama, and he developed a fever. Zachary doesn’t get many fevers, so this worried us greatly. A meeting of minds was held….we made some calls, and we decided that he needed to go to the emergency room where a doctor could examine him……take some x-rays of his belly….and hopefully figure out a solution to our growing problem.
The nearest hospital to where we are staying is only about 20 minutes away, so that wasn’t too bad. Rebecca couldn’t go with us, because technically, she still has shingles……and we didn’t want to bring any of that to the hospital. My folks were kind enough to join me…..so we headed out and hoped for the best.
Walking into a local country remote hospital emergency room, with three day old blood work, a stack of papers explaining the experimental drug that he is taking, a list (long one) of his medications, a retired nurse and retired doctor, AND, my brain which is chock full of his entire medical history..
…..all of this made for an interesting visit.
We got lucky. We got real lucky. There was no one in the emergency room waiting area. And once they learned of his primary diagnosis, they were VERY proactive about getting back into a room so the doctor could see him. They ordered x-rays, and quickly found out that he had a huge amount of gas built up in his upper GI and chest area. That was causing the pain. Surprisingly enough, they could see that he STILL had large amounts of poop in his system….that just wasn’t passing. The doctor ordered a 600cc enema…(and for those of you that don’t know amounts, that is a BIG bag of liquid to have flowing into your rectum.) He took it like a champ, and was able to contribute large amounts of waste materials to their sewage system….and afterwards, he felt much better. They released us on a liquid diet for two days…….orders to stay on the prescribed laxative, and we got on our way.
By this point in time, Zachary had not eaten for at least three days, and we learned that while away at camp, he NEVER pooped!!! EVER!!! He went seven days without pooping….so by the time he got home; he was backed up, severely. That was the beginning of the saga. Last night, he was up most of the night…..STILL pooping…..mostly diarrhea, but there is still stuff in his system that needs to pass. We’re thinking that all of the other treatments that we were doing, loosened up some of the poop and fooled us into thinking that we were in the clear……but there was SO much packed in there, that when some got released……..it’s place in his digestive tract would just get replaced with more from the colon….or wherever it was hiding.
The doctor felt that the fever could have been from the constipation or the laxatives (we had never heard that)…..or even his tumors. (We’ll ignore that last one…..at least until we go back to Philly in three weeks.)
So, now he is sleeping most of the day away….drinking when he is awake, not walking around at all…..not really sitting up much, just trying to recover from a really bad bout with constipation.
To quote the doctor at the emergency room……..”You’re full of crap!”
Scott
P.S. In four days of this drama, he lost at least 5lbs., if you don't count for differences in scales.
Friday, June 22, 2007 8:10 PM CDT
The damn dam has been partially broken!!
Late yesterday, we started to receive early Christmas presents……in the form of brown logs in the toilet bowl. Unfortunately, I don’t think ALL of the damn dam has been broken. We ended up gambling this morning and headed out on our family vacation. We knew that it would be a long day on the road…..and that we would only get a little more than half way there, but Zachary is a trooper, and we did our best.
I think the best way to explain how we got through today is by sharing a little know and rarely used prayer from the old, old testament. You’d have to look reeaaaaaaaly hard to find it, so I have typed it up for you here today, to save you the trouble.
“Praise be thou, oh lord our God, king of the universe, who sanctified us to give our child a LOT of Benadryl to throw him into a perpetual state of unconsciousness so that he could endure a stupidly long car ride and avoid vomiting.”
(If you haven’t seen that one before….then you just haven’t looked hard enough.)
Scott
Thursday, June 21, 2007 12:05 AM CDT
We are at T-minus 17 hours and counting. It is NOT looking good for a 6:00am launch tomorrow morning……..we may need to reevaluate our plans, recalculate our navigational estimates, and reassess our waypoints.
I am of COURSE referring to our estimated time of departure for vacation/family reunion. We are SUPPOSED to be leaving tomorrow, bright and early….to avoid the Friday afternoon Atlanta traffic. But………I mean…..BUTT……once again…….that low chuckle that you are hearing, is God laughing at our plans. (Just kidding….God would NEVER laugh at OUR plans….just everyone else’s.)
There is still a chance that we will leave on time. And the good news is that we actually have somewhat of a buffer, time wise, if we don’t get out the door first thing in the morning. We could always leave later in the day, and not travel as far on Friday….and then just finish off the trip early Saturday.
So….WHAT is the hold up you ask? WHY the delay in liftoff? Well……to put it delicately, we are waiting on poop! (Not to arrive mind you…..well….actually….yeah….to arrive…..but it’s not being DELIVERED………….unless you consider Zachary’s rear end as a vehicle for delivery….then yeah….I guess we ARE waiting for it to be delivered…..but not like by a truck…..or UPS or anything.) Where was I? Oh yeah….poop patrol.
Timing in life is everything. And sometimes….you just can’t escape the clock….or the calendar. In this case, we are battling the number of days that it has been since Zachary started his second round of this new drug. Now…..we know, from prior experience, that constipation is an issue. Especially between days 6 and 10. (He started last Wednesday…..you do the math.) So, had he NOT been at camp, we would have had a much greater chance of staying ahead of the game…..(the poop game that is), and had him properly medicated to avoid the terminal constipation that he is now experiencing. BUT, since he was at camp…running around, having a ball………not complaining of any problems……….we ended up with somewhat of a buildup………..(picture the Hoover Dam…….only twice as long and three times as thick.) So, we have been throwing EVERY KNOW medicine into him, to help,
……well…….undam the damn dam. (I didn’t plan that…..it just happened.) So far…..we have been rewarded with nothing other than a couple of rabbit pellets. We are at least 48 hours since our last poop……..and he hasn’t eaten in over 24 hours…….because of nausea…..because of the damn dam backup…………..damn!
The only thing keeping him out of the hospital right now is the fact that he is drinking and peeing on a regular basis. If it weren’t for that, we’d be in BIGGER trouble than we are right now. The doctor just called in an oral medicine that is supposed to end this standoff, once and for all……so we are just waiting for the pharmacy to fill that script……….and then hopefully we will be off and running…….so to speak.
So….that is what it is………we are still hoping to be able to go on vacation………………….(I wonder if they sell dynamite over the counter……hmmmm.)
Scott
Monday, June 18, 2007 7:17 PM CDT
Did you get through that “book” of an entry that I posted? Was it too long? Was it too graphic? Oh well…..you’ll get over it.
When I last left all of you, Zachary had just left for camp. (Wednesday morning). Wednesday was a quiet day for Rebecca and me; we had a nice dinner and didn’t do anything spectacular. Thursday during the day was pretty much the same thing….work, and keeping busy. Thursday evenings I deal poker for a local company that does Texas Hold-em every week. Usually, Rebecca doesn’t get to go with me, because it can be a late night for Zachary. BUT, with Zachary at camp, she was able to go. About half-way through the evening, Rebecca was walking past where I was sitting and said, “OUCH.” She grabbed her side and said, “I think something just bit me.” She lifted up the edge of her shirt, and sure enough, on her back right side, there were a couple of red marks. It looked liked something had bitten her…..more than once. Unfortunately, there was no culprit to be found…..no bee, no spider…etc. She shrugged it off and went about her business. That was Thursday at around 8:00pm. By Friday at dinner time, Rebecca realized that the “bite” marks had spread….they were just above her waistline on her right back side, and she had a few on her belly……and by Friday evening, they were itching and painful.
Now…..when you are a “normal” family that has “normal” illnesses and “normal” medical issues……….an incident like this could easily go untreated for many days. BUT, when you live in OUR world……you don’t let things “fester” for too long. Rebecca grabbed our self-diagnosis books and started to look up rashes. She quickly narrowed it down to a likely suspect….found photos of the culprit to compare to…..and formulated a plan. Early Saturday morning, she called the after hours number for her doctor, and luckily was able to get her on the phone. After describing the progression of events, the doctor agreed with Rebecca’s self-diagnosis.
SHINGLES!!!
(Not the kind you put on the roof either.)
Well……….I guess you’ve got to figure that with Zachary’s cancer, Rebecca’s lupus, my baldness (I thought I’d just throw that one in), we REALLY don’t have enough going on in our lives. I mean…..there just ISN’T enough excitement. If ONLY we could add some NEW craziness to the mix somehow……..then it could get REALLY interesting. So…….we’re lucky for that!!!!! NOT!
I guess with shingles, the clock starts ticking when the rash first appears. That would be 8:00pm Thursday. The overwhelming opinion is that if you can get on anti-viral medicines within the first 72 hours, you have an excellent chance of curtailing the progression of this disease before it gets REALLY ugly. (Painfully, and damage-wise.) So…….Rebecca went about 36 hours before getting her first dose of anti-viral meds….so she did VERY well. Her doctors were impressed. They said that most of their patients with shingles don’t get diagnosed until many days after the rash had first appeared.
The pain has been intermittent……she has been using Benadryl to fight the itching, and today the doctor prescribed something for the pain….so that she can sleep. But today was a pretty good day for her…..pain-wise….so hopefully the anti-viral med is doing its thing.
The second thing that went through our minds….after the initial “Oh $%@#!!”, was……..let us see the timing here……Zachary was around Rebecca on Wednesday morning before leaving for camp………if the rash showed up on Thursday evening, then she was contagious for a few days BEFORE that……….is he at risk? Well…we have heard many, many opinions on this. Zachary has had chicken pox at least twice, maybe three times. (Chemo is a wonderful thing…..allows for the multiple trips down chicken pox lane.) And he has definitely had shingles at least twice. So, there is a real concern about him having a problem here. We have tapped into three doctor sources to cover our bases really well. (And for the record….I don’t know that there is an absolute “right” or “wrong” here…….as a parent, you try to get a feel for what level of information each physician is giving you, and what course of action seems right for that moment…and that scenario.)
With this scenario, I was “most” interested in hearing from the doctor in Philadelphia. Once again, not because she is any better than our local doctor, but simply because Zachary is on HER protocol, and she has the MOST up to date information about his medical status….because of all of the testing that she has done.
Her opinion is that we should do nothing at this point. She feels that if he were going to react, he would have already started to show signs of trouble. She would NOT treat him in a preventative way with the shot treatment that is available.
Our two other sources, Zachary’s local doctor and the doctor that does the testing on Zachary were split on their opinions. One wants him to get the shots, and the other agrees with Philly. As luck would have it, the one that agrees with Philly is actually at camp as the volunteer oncologist this week, so he has been with Zachary all week and has not seen any sign of trouble. (Kaynahorah……..ptuii, ptuii, ptuii.) So, once again, I don’t think this is a “right” or “wrong” issue…..all of these doctors have participated in helping us to keep Zachary alive and kicking for over seven years of battling this disease. But, with Philly’s vote having at least one other backer, we are going to have go that route this time. It may come back to bite us in the “you know what,” but ultimately, you make your choices….and you move forward.
Tomorrow he gets home from camp…..and Wednesday he has a checkup with our local oncologist……so we’ll get a thorough going over….I’m sure.
Friday we are supposed to be leaving for our family reunion/vacation, so it would be REALLY great if Rebecca was recovered enough from this debacle to enjoy vacation.
Once again………chaos seems to be our norm. Balancing fifty things at once while walking a tight-rope, while juggling, while playing a trombone………that is our routine.
“If God gives you lemons, you………..you…….you….do something constructive….hang on….I’ll get it…..don’t rush me, It will come to me…….you……hang glide….no…..that isn’t it……..you do crossword puzzles…….no……..not right again, I can get this…………just give me a chance………………I know it has something to do with the lemons….but I JUST can’t put my finger on it……..Oh well……..whatever………..but in the meantime, I’m thirsty……so I’m heading off to the kitchen to have some………….water. (You were expecting something else?)
Scott
Wednesday, June 13, 2007 7:19 PM CDT
Another trip to Philly…..another long story.
(I just came back after finishing this entry to let you know that you may want to get comfortable before starting to read all of this. I rambled on for longer than expected….in Microsoft Word, it came out to 8 pages.)
First of all, let me say this….normally, I would NOT torture all of you with a long drawn out journal entry, making you wait to get the “medical” update part of the story……HOWEVER, seeing as Zachary and I had to endure the travel experience nightmare of a lifetime, I’m going to go ahead and make all of YOU wait, just like Zachary and I had to over the past two days. So there! (Sticking my tongue out.)
Sometimes, I just don’t know where to begin……..but, I guess starting at the beginning would be as good of a place as any.
This trip to Philadelphia was our 3 week checkup and our re-supply of medicine trip. We knew that all we had to do was show up in the oncology clinic in the morning for blood work, and then we had an 11:00AM echocardiogram. So, we knew that we could return home Tuesday afternoon. Originally, I was trying to find flights that would allow us to get up and back in the same day. Unfortunately, our local airport didn’t have any flights that would get us into Philly early enough….and their afternoon flights were non-existent, so we would have had to fly back real late at night, only to get home after 11:00PM or so. (If only I had known.)
I did some research and found flights out of Orlando. Now, Orlando is about 2 hours away from here, but they had flights early in the morning, and some mid-afternoon ones that would work well for the return trip. Once we determined that, I started to think that the smart thing to do would be to stay over in Orlando Monday evening, so that we didn’t have to get up stupid early on Tuesday for the early 6:30AM flight. After almost making that the plan, my dad gave me good suggestion……..”why stay over in Orlando and have to get up early and rush to the hospital after landing. Why not fly up Monday evening (with no rush), and stay over in Philly…..that way when you wake up Tuesday morning, you have plenty of time to make the appointment? Also, if you are sleeping in a hotel, what difference does it make whether it is in Orlando, or Philly?”
Hmmmm. This made loads of sense. So, we scheduled a 4:52PM flight out of Orlando for Monday afternoon, and a 3:50PM flight returning home out of Philly. That would give us an easy schedule getting up there, plenty of time to see the doctor and get checked out, and an easy schedule coming home.
“The best laid plans of mice and men.”
If you want to make God laugh…….just tell him your plans.
Well……once we got close to the Orlando airport, the traffic got ridiculous. I knew then….that things were going to get interesting. I just didn’t know HOW interesting they would get. We found parking easily enough, and made our way into the terminal. The lines at the ticket counters were amazing. Long….and seemingly without end. Now……here is the good news. Because we were only going to be staying over for one night, we had packed everything that we needed into one (1) backpack. Our clothes, toiletries, paperwork, medicines, games, Ipod, etc. So….we had no baggage to check. I got up to the self-check computer/monitor thing, and inserted my credit card. (The tickets had very kindly been purchased for us by the National Children’s Cancer Society, but they use your card to identify you and find your reservation.) The machine couldn’t find me. It gave me the option of entering my telephone number, which I did…..and once again, it didn’t find me. (At this point….sweat started forming on my brow……) I politely asked for assistance, and the nice lady behind the counter was able to pull up our names and find our reservation. She printed our tickets, and we were off and running for our gate. We had about an hour to kill, but I needed to find food for Zachary, since the flight was going to take us through dinner. (And they don’t feed you on flights anymore.) Zachary wasn’t quite hungry enough for dinner, so we stopped at a book/magazine store that also carried junk food….and found some chips to throw into the backpack. While there, I found a new hardback book by an author that I like, so I bought it, figuring that I could read it while waiting for the plane, and then at the oncology clinic while waiting to be seen. (If only I had known.)
We got to the gate with about 50 minutes to go before boarding. At approximately 4:28PM (about boarding time), they made an announcement over the speaker system that our plane had experienced some difficulty while leaving Charlotte, and would not be arriving in Orlando until 4:56PM (four minutes AFTER it was supposed to be leaving) and that they expected our departure time to be more like 5:40PM.
OK……….no biggie, I’ll just read some more……Zachary has his Ipod and game PSP….so he’s cool……….no rush….no worries, no problem!
RIGHT!
HAHAHAHAHAHAHAHAHA
At 6:00Pm, they announced that the weather system that had moved in over the airport (believe me….it moved in….and it stayed), was producing lightning strikes that were hitting the runway, so they had diverted all planes away and were waiting for the system to move on. Our plane was currently in a holding pattern over Ormond Beach……and it would stay there, unless it got low on fuel, in which case it would be forced to land somewhere else. They would update us when they had more information. So, Zachary and I were getting hungry, so we went ahead and ate dinner. Then, I went back to my book and he went back to his games and music.
I guess I could drag this on and on and on….like it did for us, but for this part of the story, I’ll cut to the chase. By 8:30PM, I had finished my book. The WHOLE book. A complete novel……gone….finished….over. We ended up taking off from Orlando at 9:30PM…….we landed in Philly at 11:30PM….and found a taxi………..we arrived at the hotel near the hospital at 11:45PM….checked in…..and went straight to bed. A simple trip had turned into a marathon.
……..and sadly……..that was by FAR our good day!!!
Tuesday morning started out great. We woke up and met one of my old college buddies in the hotel restaurant for breakfast. We had plenty of time….and that was great. Afterwards, Zachary and I walked the four blocks to the hospital and made our way up into the clinic. As always….they had their acts together there. They were efficient and got us in quickly. He had his blood checked, we saw the doctor, and then had his echocardiogram done…on time. We were finished by 12:15PM. (More on all of that AFTER this next part of the saga.)
Our flight home wasn’t scheduled until 3:50PM. Because we got done early enough, we made it to the airport by 12:30PM…..I don’t mind getting there that early, especially since we hadn’t eaten lunch yet. Now….back to the wonderful self-check computer/monitor thing……I inserted my card…and WOW, it actually found us. Only this time…….it wanted to negotiate. The screen informed me, that while we were booked on the 3:50PM flight from Philly to Orlando, we were being offered this onetime opportunity to catch an earlier flight. For the low, low cost of $25.00 ea. ($50.00 total), we could get on the 1:55PM flight. WOW, this was great. We would be in Orlando by 4:30PM, and we could actually have dinner with Rebecca if I made the drive in the normal 2 hours. No brainer! Here’s my credit card. DONE! But, our “extra” time at the airport just got cut down by a whole bunch. I still needed to feed Zachary lunch. So, we scrambled and found something to eat and made it to the gate in time to board the plane. All was well in the world……..or so we thought.
We got on the plane with no difficulty. The plane got all locked up and comfy with no difficulty. We backed away from the gate with no difficulty. We taxied down the runway with no difficulty. And THEN…….we had difficulty. Bad weather had followed us from the previous day…from Orlando….all the way up to Philly. The tower closed the runways and wouldn’t let us move. For four hours. Four LONG hours. First is was the weather…then it was the air corridor, and then it was….I don’t know what it was after that………but people started to get restless. One gentleman in particular asked to get off of the plane. So, after four hours of sitting there, the captain informed us that he was going to go back to a gate…to allow anyone that wanted to, to exit the plane. He also said that we needed more fuel; because of how long we had sat there waiting to take off. We pulled into the gate, and they announced that anyone who did NOT want to go to Orlando should exit the plane. After those folks left, the captain informed the rest of us that we would only be in the gate for another 20 minutes or so. He also said that we could exit the plane, to stretch our legs or to buy something to eat, but that he wanted us all back on the plane within 15 minutes…to make sure that when he got the word that we could take off, we weren’t looking for passengers. At this point in the story, I should mention that my stomach was starting to NOT feel so wonderful. I don’t know if it was all of the health food that I had been eating at one airport or another, or if it was somehow related to the stress that I was feeling, thinking about how late we were going to be getting home. Either way, I knew that I A). Had a problem. And B). Didn’t want to share that problem with an entire planeload of folks that were already in a bad mood. So, I grabbed Zachary, and our bag…..just in case I didn’t make it back in time….(his new meds were in there…..couldn’t take any chances.)….and sprinted to the bathroom. Zachary had to go also, so there wasn’t any argument from him.
NOW….when I tell you that we had 15 minutes…..I mean that I looked at my watch and did the math…….just to make sure. I made it to the bathroom within 2 minutes, which left me 13. I then proceeded to spend the next 12 ½ minutes having FLAMING DIARRHEA!!! Now…some of you may be wondering what the difference is between regular diarrhea and FLAMING DIARRHEA. Well…..it is simple really…..with FLAMING DIARRHEA, you actually have sparks and smoke shooting out of your ASS!!! And….in case you were wondering how I know whether or not sparks and smoke were shooting out of my ASS, well, lets just say that the burn marks on the toilet and the thick fog surrounding my stall were a dead giveaway.
Suffice it to say….I sweated through those 12 ½ minutes, wondering if I would get done in time to return to the flight. Thankfully, I did. We made it back to the plane, within a few minutes of returning, we were all locked up again and taxiing out towards the runway. The captain then informed us that the tower folks were not being too receptive to his requests of reinstating us back in the queue where we had left off. We ended up sitting there for another 1 ½ hours before finally taking off around 8:00PM. We landed in Orlando, tired, hungry, and not at all happy, at around 10:00PM. We made our way to the car, and then I realized that I needed to gas up before hitting the highway….plus, we still hadn’t eaten dinner, so I found a Wendy’s that had a gas station attached to it. I pulled up, inserted my credit card, and selected the “cheap” grade….and started to fuel up. About $20.00 in to the purchase, I realized that I had only been squeezing the handle for a few moments, so I glanced down at the price indicator located near the grade button. And what did I see there you ask? The “cheap” grade in Orlando was…….(get ready for it….here it comes.)….
……$4.30/gal. FOUR DOLLARS AND THIRTY CENTS PER GALLON. ARE YOU KIDDING ME? ARE YOU KIDDING ME? WHAT HAPPENED WHILE I WAS ON THAT TARMAC FOR 6 HOURS? DID I FALL INTO A BLACK HOLE AND GET TRANSPORTED TO ANOTHER DIMENSION? DID I ENTER A PARALLEL UNIVERSE? $4.30/GAL…..YOU HAVE GOT TO BE KIDDING ME.
After filling up with the liquid gold, we entered the Wendy’s to find nourishment. Sadly, there was a guy behind the counter that couldn’t have possibly been any slower or dumber. In fact, I am going to go out on a limb here and say once again, that I can’t fathom a world where I could ever think as slowly as this guy behind the counter. With only three or four of us in line, this guy was overwhelmed beyond help. Staying in that line would have rivaled our time on the tarmac in Philly…….I grabbed Zachary and made a beeline for the exit.
We made our way onto the turnpike, and I drove for about 30 minutes before reaching a rest plaza that had food. We ran in and got some Burger King to go………..I got an iced tea to drink, (hoping the caffeine would help…….I don’t drink caffeine. I have never had a cup of coffee…..ever…in my life.) We ran back to the car…..and I drove straight home. We pulled into the driveway at 12:40AM…..and I was in bed by 1:00AM.
THAT was our adventure!
Now…..back to the medical news…….Most of you are ALL too familiar with my love for urine testing. HVA/VMA testing has given me some of my most colorful material over the years. Well, Philly does test the urine….they don’t put a whole lot of faith into the results either, but they like to see where the levels are. Zachary’s levels were normal. Go figure? His blood work up there from yesterday was still above our normal levels. It wasn’t quite as high as last week’s, but it does fluctuate, and the levels were still strong. The results from his echo weren’t available right away, but the doctor listened to his heart and thought he sounded great. We reloaded on meds, and set our schedule for our next visit in July. That one will require a couple of nights stay. Zachary will need another MIBG scan that time. There is only one company/lab in all of North America that makes the isotope. They won’t be making it for the week of the fourth, so everyone will be scheduling their MIBG’s for the same week as us. So, we couldn’t get a scan time until 2PM on Wednesday of that week, so we’ll have to stay over to catch a flight the next morning, unless we want to fly back late at night. We’ll see…….I’m not too keen on making any flight plans right now……..the airlines are somewhat of a sore spot…..if you get my drift.
This morning, Zachary left for Boggy Creek (cancer camp) for one week. No rest for the weary!
Scott
P.S. I am officially calling for a boycott of Orlando! Our fuel pricing everywhere else around us is at or near $3.00/gal. For them to be $1.30 higher for NO reason is criminal. They are taking advantage of all of the summer travelers that they are getting. Plain and simple……no other explanation. It’s not like the fuel has to travel up some huge mountain range to get to Orlando (Florida is flat for those of you that are geographically challenged.) They suck…..they’re thieves…….don’t go there.
Thursday, June 7, 2007 9:09 PM CDT
“Kaynahorah” (Ptuii, ptuii, ptuii.)
OK….I got that out of the way….just in case. (I’ve learned my lesson the hard way with that.)
Well….here it is…..take it for what it is worth……believe it or not, doubt away….doubting Thomas’…………..
Hmmmmmmmm……I am stalling……hesitant to write this update. But I DID say my “Kaynahorah”, and I DID spit three times, so I SHOULD be covered…right?
Well……Zachary has been off of Irinotecan (chemo) for almost two months now. Most chemo agents seem to knock the blood counts down by day 10…..and then, you rebound slowly, (depending on how strong the chemo is), and then your counts get back up to where they hover…once again, that is determined in part by how strong the chemo is.
So….if Zachary hasn’t had that chemo in almost two months, one would expect that any recovery his system would experience would have happened several weeks ago……(Like a month ago.)
Now…….let’s move forward to his current medicine. Listed under “Likely Effects” is “Fewer white blood cells and fewer red blood cells.” It says it quite clearly on the protocol sheet. Blood counts are affected by this new drug.
Now……are you with me so far?
A). His counts should have rebounded to wherever they were going to rebound to about a month ago…having been off of Irinotecan for so long.
B). His counts should have been knocked down from that point by this new drug…..and possibly be on their way back up.
So…..where are his counts?
Why all of the drama?
Well……part of this new treatment plan is checking his counts each week.
Obviously they want to know where his levels are and what is going on in his bloodstream.
Now…the only other difference in his routine is this new supplement that he has now been on for three weeks. He has been very good about taking the 8 drops in the morning and 8 drops in the evening. (It mixes well with just about ANY liquid, and has virtually NO taste…..so it has NOT been a battle….thank goodness.)
When I was first introduced to this new supplement, I was told that it is the strongest antioxidant on the market, and that we should see his blood counts improve. I was of course skeptical, because his counts have hovered around a very tight range for years now.
For those of you in the cheap seats, here are those averages:
WBC (White blood count) 1500 – 3000
ANC (Absolute Neutrophil Count) 750 – 1700
Platelets – 150,000 – 300,000.
Reminder – The ANC is that part of the WBC that is helping to fight infection.
And the Platelets are what the body uses to clot the blood….like when you get cut.
So….where were we on Tuesday with his counts?
Drum roll please.
WBC – 5200
ANC – 2900
Platelets – 386,000
(I’m going by memory, so I may be off by a couple of points here or there….but you get the idea.)
So………how is this possible? IS it possible that this new supplement is really boosting his immune system THAT much?
I have been trying to remember, and I can’t recall blood counts this strong anytime in the past 4 or 5 years.
I’m sure someone at the doctor’s office could do a search, to prove me wrong….but I usually take a keen interest in his counts (I’m a numbers guy in case you didn’t realize that yet.)…..and I just can’t remember any of his counts being this strong.
“Kaynahorah”…(Ptuii, ptuii, ptuii.)
Once again….just in case.
So……there you have it……for those of you that are firmly planted in the Cancer Sucks Club, those counts will mean a LOT to you as you review this update. For the rest of you, you’ll just have to take my word for it that we are pleased…..and the doctor was pleased.
Tuesday, Zachary and I will be in Philadelphia for the day, so we will ask the doctor up there what she thinks about these counts.
Scott
Sunday, June 3, 2007 8:39 AM CDT
Another week goes by……and thankfully there is not a whole lot of news to report.
Sadly, my updates are more frequent and more “juicy” when things are going poorly………personally…I’d rather have nothing to write about…..and be living worry-free……yeah….good luck with that.
Well……Zachary has been doing pretty well with the new medicine. He did vomit once this week……..and had some fatigue and loss of appetite…..but all of that didn’t last too long. It appears that the early favorite on the most difficult symptom to wrestle under control is the constipation. Because of Zachary’s already delicate digestive system from two years of drinking Irinotecan (gasoline flavored chemo), he was ultra sensitive to this new pill that is known to wreak havoc on the belly. At first, it seemed that the diarrhea was going to “run away” with a victory, but slow and steady (plenty of puns intended), came from behind, (another great pun), and squeezed out (yet another) a victory. So, here we are trying to find a balance with stool softeners, without throwing him back into diarrhea mode.
I’m hoping that we are nearing the end of the side-effects from this round. I believe that days 5-10 are the most likely for symptoms to appear….so we should be coming into the honeymoon zone where he gets to enjoy a week or two without problems. He was experiencing some back pain earlier in the week…..and that always concerns us. (Back pain was the original diagnosing symptom and then again at relapse….so we are always on edge when his back is hurting.) I don’t have any data on how long it should take for this new medicine to get the cancer under control, if he is going to respond favorably to it……so it is difficult to predict what we should be expecting. We return to Philly for one day of follow-up a week from Tuesday….and they will only be doing blood work and an echocardiogram, so I can’t imagine that they will be able to tell us how well he is responding at that point. Four weeks after that we repeat the MIBG scan, and I imagine that we will have a much better idea as to how things are progressing at that time.
As for the back pain, while it was/is disturbing, it doesn’t seem to have been bothering him as much these last few days….which is a great sign. You would NOT expect bone lesions to stop causing pain once they start…….unless they are responding to treatment. But, I believe that it is more likely the pain was caused by a muscle pull or activity related movement….because of how quickly it seemed to resolve itself.
Hypotheses, guesses, theories, etc………what else am I going to do with my brain while I’m awake?
Scott
Sunday, May 27, 2007 7:44 AM CDT
Well, we made it home safely from Philadelphia!
Overall I would say that the trip went very well! The city was great, the people were great, and the hospital lived up to its amazing reputation.
Now, we get two weeks of home duty before having to go back for a one day visit.
Zachary still feels good. He has not complained about anything other than fatigue….but we have been traveling or on the run for awhile, so that is not too surprising.
(Actually, fatigue is one of the rarer symptoms that we need to watch out for on this drug. But, according to the doctors, the symptoms don’t usually start to show up until day 5 or 6, so we’ll be keeping an eye on him for any troubles.)
[FLASHBACK]
When I was 17 years old, my summer job that year was at a hospital that I had been volunteering or working at since I was 13. I got hired to assist in the Management Engineering Department. I had never heard of such a department, but it sounded important, so I took the job. The basic duties of these folks were to help other departments with designing and facilitating moves from one office to another……in other words…..how can we make all of the stuff we are using in THIS space….fit into our new office over in THAT space. We would lay out designs (to scale) of the office and all of the furniture, and then help them work through finding the best solution to make the office work. The other interesting duty that I was given that summer, was to review a weekly publication that was compiled solely of ideas being used around the country at other hospitals for saving time and or money. I had always held the belief that there is almost always a better way to do things…..and the genius behind this publication was, someone else had already done the leg work and figured out a way to improve upon an existing system……so all that I had to do was to try and apply their ideas to our hospital. It was very interesting. I remember one idea in particular that I read about. It involved the bathing/washing of patients. Someone had found a new soap/scrubbing system that cut about 20 minutes off of a 30 minute bathing time, but provided an equal amount of cleanliness, because of the cleaning agent and the way it was applied. So I commenced to doing a study…..I interviewed the nurses….spoke with patients, calculated out the dollars being spent, and the time being spent on the “old” system. In the end, I was able to show where the hospital could save over $100,000.00/year using this new system…while at the same time, freeing up the nurses so that they could care for more patients….and also provide the patients with better care. I don’t know if the hospital ever implemented that idea, but I was reminded of it while we were up at CHOP in Philly.
As I mentioned in an earlier journal entry, Zachary had to spend one night in the hospital so that he could participate in the extra study relating to blood levels of the new medicine. Well, a stay over night obviously includes meals from the hospital kitchen. Usually, this is a BIG problem with young Zachary. You could serve caviar on a hospital plate, and he would reject it…solely based on the plate that it arrived on.
Well, one of the first things that our nurse told us about was an answer to the age-old problem of meals…for kids….in the hospital.
Here are the common problems:
1). Meals are brought all at once and tend to get cold before the kids can eat them.
2). Meals are brought at a specific time of day. Kids can be sleeping, not feeling well, or away for testing….and once again, the meal sits or gets wasted altogether.
3). Meals are ordered the day before, to give the kitchen time to plan for the meals……well…..kids (especially oncology kids) have fickle taste buds….and their likes and dislikes can change daily.
Solution:
Each room is provided with a comprehensive children’s menu for room service. Children order the meals when they are hungry, and ready to eat. Meals are then prepared hot, delivered hot, and in the room about 20 – 40 minutes after order time. This increases the chances of the child getting what they ACTUALLY want, at that time. It also increases the chances of them being in the room, awake, and ready to eat. AND, it eliminates a whole lot of waste.
Genius!
I can’t tell you how many times we wasted food at other hospitals. I can’t tell you how many times Zachary’s meal came while we were either away for a test, or sleeping.
I can’t tell you how many times a meal came when we were NPO (no food/drink allowed because of an upcoming procedure).
I can’t tell you how many times a meal came when Zachary decided that he wasn’t in the mood for whatever he had ordered the day before.
If you are an oncology kid or parent, then this all probably sounds very familiar to you.
I wonder whatever happened to that publication from 27 years ago. I wonder if it still exists, and if there are folks out there using it, to improve their hospitals. I wonder.
Scott
Thursday, May 24, 2007 4:03 PM CDT
I don't like to keep using my old standby of “There’s good news, and there’s bad news,”……but…..it fits…..so here goes….
There is good news….and there is bad news.
The good news is that the bone marrow test from Monday shows no disease in his marrow. This surprised us…….we figured that with disease progression, we would be looking at marrow disease again too…..thankfully, we are not.
The bad news is that CHOP’s MIBG test is showing several more sites of activity than our Florida test did. The one up here is showing the spine (which has always lit up), the left hip (which Florida saw), multiple spots in the skull (he had bone disease there upon original diagnosis), and spots on his sternum (this one is totally new.)
So, what does it all mean?
Well….I don’t know that it really changes anything. I don’t believe that the “new” sites that they are seeing here are really NEW. They are probably just sites that the Florida machines did not pick up on. For what reason????....who knows? Their machines here are definitely state of the art…….we were able to watch the imaging while Zachary was being tested, and it was quite impressive.
We met with the doctors that run the program, and they are quite nice. Everyone has been great to us up here. Our primary doctor conveyed to us that had we shown up for help, without a specific protocol in mind, she would have still recommended the one that we chose………so we are confident that we have made the best choice, given the options. There were other choices that they could have offered us here, but the one we found seems to have the best of everything that we are looking for.
We have heard anecdotal evidence of children that have been able to stay on this for three years with no side-effects, no disease progression, and some disease improvement. All of that sounds great to us……sign us up….we’ll take it!
Zachary started the new medicine yesterday. He stayed over night in the hospital so that he could participate in a voluntary aspect of the study where he allowed them to take several draws to evaluate the levels of the as it works through his system over the first 24 hours. We will be back in the clinic tomorrow so that they can take one more sample, and then we are finished here.
The protocol has Zachary taking three pills, once a day for seven days. He then gets a two week break….and then we start over again.
We do need to return in three weeks for a one day visit so that they can see how he is doing, and re-supply us with meds.
As far as Philadelphia is concerned….I have been quite impressed and pleased with this city. I had a much different picture in my mind of how this city is. Everyone has been very helpful and kind to us. We asked about 254 people where to go for the best Philly Cheese Steak….and we got about 254 different answers. One guy we met at a restaurant on Monday evening seemed to be pretty knowledgeable, so we went with his recommendation and tried Jim’s on Tuesday……..and it was good. We may need to try another place tomorrow, strictly for research reasons, to make sure that we have a good sampling of data before passing any final judgments.
Scott
P.S. Pray for my cholesterol to stay below 200.
Monday, May 21, 2007 6:52 PM CDT
***ATTENTION ALL LURKERS***
***ATTENTION ALL SPIES***
***ATTENTION ALL TATTLE-TAILS***
The following journal entry is intended for the sole purpose of updating our many friends and family readers that are so anxiously awaiting news from Philadelphia. The news/update provided herein in NO way is meant to reflect poorly on any hospital/doctor/institution that we may or may not use when we are in Florida. Just because I am going to brag about how great they do things up here, please do NOT infer from that information that we in any way think that things could be improved at home. If, for instance, I mention that up here, they do the bone marrow procedures in the morning, in order by age….starting with the younger children that can’t go as long without eating……but somehow, they STILL manage to complete all of the procedures by noon…..while at some other unnamed facilities……they cannot even begin the procedures until 2pm. If I were to mention that….I would NOT want it repeated that I somehow inferred that there is a better way to treat our children. I would only be relaying information about our visit to THIS facility…..any comparison would be purely coincidental, and not intended by me…the author.
If I were to write that up here…they seem to feel that treating the kids quickly and efficiently, lowers the risk of exposure to bugs that are always floating around hospitals…..they keep things moving……while at the same time providing excellent care. Once again….I am NOT saying that you can’t get excellent care someplace else……….I’m just saying….that no matter how well you do things…there is always some smart aleck parent out there complaining about it….NO wait a minute…that is NOT what I was going to say…..I was going to say……..no matter how well you do things….there is ALWAYS room for improvement!
The difference seems to be…..some facilities are committed to making changes for the better…while others are more interested in smoke and mirror shows……”Paint a few walls here…..lay some new tiles there……..add some new beds here…..and then have the newspapers print a story about how you are “Building a new floor for the oncology children.” (I may be old and losing my mind…but I remember those stories……I remember calling the organization linked to the changes at home…and I remember them assuring me that they had been promised that a new floor was being built.
I think they were duped.
I think the families have paid the price.
I think it sucks.
And why I am so worked up about this….now…….so many years later……because once again….we are at a facility, far from home, getting the kind of care that every family deserves. Why does it feel like some people out there are trying to reinvent the wheel, and for some reason it keeps coming out square? Well, the reason is, someone didn’t do their homework. The answers to ALL of the puzzles are out there…..out HERE! All anyone has to do, is travel around and see what is possible………..and let me tell you, the possibilities are endless. The doctors like it better, the nurses like it better…the support staff likes it better…..and the families LOVE IT!
What is that? Did someone out there try to pull the “money” card on me……..”We can’t raise enough money to duplicate the kind of facility that you are talking about.” BULL! Don’t even go there. Let me see…..where oh where did I put those skeletons? OH…there’s one……..let’s see……..the money was on the table years ago…..and it was refused……..why? I don’t know….but I know it was there……………once again…the families are paying the price.
So…….we are here…far from home…in a world class facility. As it happens, the treatment that we require is only available far from home. So, even if we had the kind of place that I am talking about, we would have still had to travel…..but what about the other families? All of the other families that are local….and haven’t seen what is possible. They SHOULD be benefiting from the lessons learned over many years……by medical professionals around the country….but they are not getting ALL of what is capable….I know this….and it is painful. It is painful to look into the eye of another parent, and know that they are missing out on so much.
How is possible that we had it better 7 years ago than the new families being diagnosed do today? I’m not talking about how shiny the floors are….or how nice the shades are…I’m talking about how the families are enduring a completely different non-inclusive atmosphere……………..
BUT……..I’m rambling on……….remember…this entry was in no way meant as an insult to any facility anywhere……….I was just tired, and worn out…..and concerned about the future….so I started to write…………maybe I’m delusional. Who knows?
The bone marrow aspiration and biopsy went well today. Zachary was a little sorer than from the last time he had one. We ate lunch at the hospital after the procedure….and made it back to the RMH by 1pm. They will have the results from the marrow draw by the end of work today….and the biopsies will be finished by Wednesday…..Hmmmmmmmmm (that seems rather fast….I wonder HOW they manage that.)
Tomorrow we get the CAT scan and the injection for the special bone scan.
Scott
Thursday, May 17, 2007 6:51 AM CDT
There are waiting games….and then there are waiting games. We were told by Philly that we would hear yesterday whether or not we need to be there for testing/treatment next week…….they never called. Rebecca finally got a hold of someone late yesterday afternoon and they said that the final piece of the puzzle (getting the drug from the manufacturer in time for Zachary to start taking it while we’re up there) had not come together yet. So now we are told that we will hear from them today…..that gives us three whole days to make travel arrangements. Oh well, you do what you have to do………..we’ll manage.
(That last paragraph was the “update”…..now we get to juicy stuff.)
(Deep breath)
(Another deep breath)
(Yet another deep, deep breath)
(Breathing is good)
[Why is it good?]
(Because…I just said, ‘Breathing is good’, what more do you need?)
[I don’t NEED anything….I’m just responding to what you typed….it seemed odd to me.]
(Well…..who in the hell are you to question what I type?)
[I am YOU……and now YOU are freaking me out……you’re arguing with yourself……moron.]
(I am arguing with YOU…..which….technically is ME……but that’s not the point.)
[OK…..genius…..what exactly is the point?]
(OK….the point is this……we have a spy among us.)
[Oooooooh……drama…………you’re SO dramatic…..just get on with it and quit stalling.]
(I am NOT stalling…..I am contemplating on how to delicately handle a unique and sensitive issue without offending or otherwise exasperating a situation that could very easily blow WAY up in my face…..so BACK OFF.)
[Whatever………….I say you’re stalling.]
(As I was saying….we have a spy among us.)
[You can stop with the parenthesis and brackets……..and just type…..people are REALLY going to think that you are schizophrenic.]
( I am NOT schizophrenic….I am merely typing as I think….showing that I have a conscience that keeps me balanced and focused….usually.)
[We’re waiting…….type away………tells us ALL about this spy of yours.]
We have a spy among us. It is true. There is no denying this. The question remains….is the spy or spies lurking out there…..watching out for us…….and trying to act in our best interests……or is there another agenda?
I have been thinking about this for several days….since I learned of the traitor.
[OK….let’s just stop right there…….when you use words like ‘traitor’, you are painting a picture of a devious, manipulating, individual that has malicious intents……you need to BACK OFF…and assume the innocent are indeed innocent…….until you can prove otherwise.]
I apologize………..I am sorry for the traitor comment. The person or persons that are lurking out there…reading every word that I type….and then reporting back to the institutions that I write about……have NOT been shown to be acting in a malicious manner……………it is entirely possible that they have our best interests at heart. It is also possible that they merely wanted to help ‘repair’ or ‘fix’ the situations that I was writing about…..and that, instead of contacting us and offering assistance, they felt that by tattling on us, they could bring light to our dilemma’s and make things better.
[There you go again………’tattling’ infers that this person or persons acted in an immature or childlike way, that again paints a picture of someone that lacks the skills to communicate on an adult level…………you need to apologize for that as well.]
(Fine….I’m sorry again….but can I use that whole part about ‘acting in an immature or childlike way’ and ‘lacking in the skills to communicate on an adult level’…..I like that stuff?)
[Absolutely NOT…….I was not trying to help you in your quest to tar and feather the person or persons, I was merely making an observation that IF the person or persons that informed the institution that you were writing about acted out of something other than a protective mindset, then that WOULD make them appear to be sad, sad people.]
(Whatever…this is doing nothing other than making me late for work while I argue with YOU (me)…whatever, stay out of my head while I finish this please.)
[You NEED me in your head….you WANT me in your head….you talk about me at parties……]
(Great movie quote/twist………….inappropriate….but great.)
So….that is that…..and I leave it up to you to decide…………do we have a spy that is working against us, or do we have a wanna-be guardian angel?
I truly don’t know the answer to that question. All I know is this……..I received a phone call from the unnamed department that I wrote about the other day……and they asked about this web page….and why I was writing “bad” things about them………..How’s THAT for drama?
And how did I respond to that totally inappropriate and outlandish, yet true, accusation?..........I owned up completely to writing about anything that I DAMN well want to write about…….I calmly explained that this is a PRIVATE web page designed for us to inform friends, vent about our frustrations, or do whatever the hell else we DECIDE to do here. I further explained that I quite often VENT on this site….and that I use it as a means of therapy. The person that I was speaking with very coolly avoided outright asking me to change my tune on here…..they said, “I just wanted to make sure that we were doing everything that we could to help you and that there were not any other unresolved issues.”
I thanked them for their help….but I also made it clear that we have lost our faith over the years in their institution. I explained that this did NOT happen over night…..that there were a multitude of issues that led us to that mindset. And that is where we left it……..
What I didn’t say….but was sort of thinking….was this………..we are ten days away from the fifth year anniversary of writing journal updates on here. In those five years, just under 500,000 visitors have graced our page with their presence, (480,440 as of this writing). I have written about many, many of our adventures….I have exposed a lot of inadequacies and errors over the years…………but……as I sit here….writing this entry………let me assure you of this…………without moving anything other than my head…..I can look off to the right side of the room and see a closet………………a closet FULL of skeletons. However many times that I have written about frustrating situations, there are a dozen more UNTOLD stories…………however many injustices that I have exposed….there are hundreds more that I have kept in the closet.
So……….what have we learned here today? Well……..we have learned that there is a person or persons that decided to take it upon themselves to lurk amongst us…and then report back what I am writing about………what we have NOT learned….is whether or not they did this with the intent of helping us…..or just spying on us. I guess it doesn’t really matter………..what matters is how we move forward.
I need to be able to vent on here…and to write about whatever comes to my tiny little vindictive mind……without worrying about retributions……….if I can’t write in that style……then you all are going to be reading journal entries that will sound something like this:
“Everything is fine. Zachary is fine. Rebecca is fine. I am fine. All of the doctors, and all of the nurses, and all of the hospitals, and all of the testing institutions, and all of the labs, and all of the administrators, and everyone else is,
fine. Stay tuned for another update tomorrow….but don’t worry….I’m guessing that everything will be just…..fine.”
Scott
P.S. Feel free to post your observations or feelings about this update......don't be shy.
Monday, May 14, 2007 6:47 PM CDT
Well….we are home from our whirl-wind tour of the hospital.
Our day started with an MRI at 7:30AM…that was followed by an ultrasound of the belly….to once again look for the culprit of the now almost gone belly pain. That test was unremarkable…….
…..nothing was found. After that, we had some time to kill…..and then we returned to see the G.I. specialist…and then our oncologist to go over the MRI results.
The G.I. doc feels that the belly issues have all but resolved themselves. He is fairly certain that the oral chemo was to blame. (Go figure…drinking vile, gasoline tasting toxic substances that nurses where gloves to handle…..can cause belly problems…hmm, WHO’D have thought?)
The MRI results pretty much confirmed the MIBG scan results; there is still disease in the bone…on the spine….and in the hips. What isn’t quite clear is whether BOTH hips have metastases, or just the left. The report has some discrepancies. (WHAT A SURPRISE……funky reports from St. Mary’s…..HOW COULD THAT HAVE POSSIBLY HAVE HAPPENED?)
I swear…if I don’t already have heart disease from all of this, it will be a miracle. So…our oncologist is going to review the MRI reports WITH the radiologist tomorrow…to get to the bottom of what exactly is what………….good luck with that…I say.
Meanwhile…we heard from the doctor in Philly that runs the study that we chose….(or was chosen FOR us, by default…depending on your perspective,)…..and she wrote that Atlanta is not quite ready to accept patients on this study….so we will have to travel to Philly first…for a week…and then we can do follow-up in Atlanta after that. So….now we need an echocardiogram of his heart, to make sure that he is OK for anesthesia for the bone marrow test, and then I guess we’ll find out a date that we can be up there. We were hoping for next week….but it is starting to look like the following week will be more realistic.
Zachary still feels great, so that is a HUGE relief for us.......that is our saving grace right now.
So….we have been off of chemo for five weeks now….we are waiting for probably another two weeks before we will be on this new treatment……….so all we have is Protocel…….or is it?
We were recently introduced to a new supplement that has some amazing anecdotal evidence with cancer patients. It just became commercially available this past week……..there is good news, and there is “bad” news:
The good news is that this new supplement is much less expensive than the Protocel…..it comes out to about a third of the price. Also, it has no taste…..eight drops in the morning, and eight in the evening…mixed with any juice/water/drink….and NO BAD FLAVOR!!!
The “bad” news is that it is NOT available through normal channels. It has just started as a multi-level marketing product, meaning that like Amway or Mona-Vie, you can buy it from someone selling it, or join the fun and try to make money while using it yourself.
Now, out of respect for Caringbridge, I will NOT be selling this on Zachary’s page. We are excited about the success stories that we have heard, so we are using it……and it is obviously less expensive to buy when you are part of the program…so we are part of the program. SO….anyone that is interested in getting more information about this can email us……….OUTSIDE of Caringbridge….and we will gladly give you the webpage to research it.
Once again….I am NOT looking to get rich on some hair-brained scheme…….I am merely looking for a way to keep Zachary healthy, and hopefully get rid of his disease.
Our email…in case you don’t have it, is:
srfinestone@hotmail.com
We are hoping to get the MRI issues resolved by tomorrow, and the echo scheduled and reported within a day or so….I will keep you posted on all of that.
Scott
Friday, May 11, 2007 5:38 PM CDT
If you have NOT read yesterday’s journal update………..then do NOT pass go…….go directly there first to get the update on scans.
The rest of us will forge on ahead without you.
In yesterday’s journal entry I outlined three treatment choices. Today, I spent hours on the phone with doctors from Ohio, Georgia, Mississippi, Bethesda, Philadelphia, and Ft. Myers. After a long day, I can tell you this:
There is good news and there is bad news:
The bad news is that I will be in need of a three-sided coin, to help with the decision making process.
The good news is that, when you find this three-sided coin, you can put the same SINGLE option on all three sides…..because two of the choices that I described are not available to us for one reason or another.
Now, before you all get your panties all bunched up about this news, calm down…..it’s going to be OK. The one choice that involved a lot of pain, is no longer available to neuroblastoma patients with disease only definable on MIBG scans….in other words, they need to be able to find disease in the bone marrow. No Thank You!
The other study that we can’t get on has a waiting list. If we sign up right now…..we will be an “alternate” on the list…which means, if a couple of other children “drop off of the list”, we would have a chance of getting on in a month or two. “Dropping off of the list” is the doctor’s nice way of saying, “If some kids die, you get bumped up on the list.”
I don’t know about you…but I’m thinking that there might be some bad karma in waiting for bad things to happen to other people….to get good things to happen to you……..but that’s just me talking.
So…the third study is looking GREAT!!! Actually….it does sound good…..I spoke with several doctors today about it….they all thought it was the best option….and one them actually wrote the study……so there you have it….the votes are in….America voted……..and ABT-751….you ARE the new American Idol!!!
This is a phase II study…meaning that it has already been tested for dose escalation……(they know how much to give the kids). It has been shown to work….there is evidence that it is benefiting kids….so now they make it official and see just HOW effective it is. We will be traveling to either Philadelphia initially, or Atlanta. Then for follow ups we should be able to go to Atlanta. I will keep you posted on all of that.
Another interesting thing/idea/theory came up today while speaking with all of these neuroblastoma doctors. I now am pretty well convinced that Zachary was never in remission back in 2001.
Back then….we were doing bone marrow test, but no MIBG or other bone scan to look for disease. Zachary’s bone marrow has been clean for several years….and yet his spine has always lit up on MIBG….showing active disease………..several doctors have mentioned that he is very, very, very, very lucky to have this quality of life….so far out from “relapse”……….
…..I think that back in January of 2001, when we tested his marrow and found no disease……..the disease was still there…in his bones…not his marrow…or not measurably in his marrow. I think that the transplant knocked the crap out of the disease and did a great job of “disarming” it for the better part of 2001. I believe that eventually, the disease rebounded…and by the beginning of 2002, it had grown back enough to cause symptoms…which led us back into treatment with a diagnosis of having relapsed. But I believe that we never were there…………I think his disease has never fully gone into remission.
What does this mean?
Well….for one…….it means that we may yet be able to cure him!
I’ve written many times about the horrible (non-existent) odds of survival for relapsed patients………but if he never was in remission, then he never relapsed………which would explain why his disease has acted more like a chronic illness…rather than an aggressive tumor.
I could be all wet behind the ears on this one folks….maybe it’s just wishful thinking….I don’t know……….what do I know….I didn’t go to medical school……I don’t have formal training….I just have my lowly 7 years of experience living in this nightmare. Either way…….this new treatment looks promising…and it should give Zachary better quality of life than most of the options out there. Plus…there is some very interesting research being done with an agent that Zachary tolerated VERY well in the past….and this new research should be available as a phase I or phase II soon. So we will keep that on the back burner and go with the phase II.
Things are changing daily………stay tuned….stay alert…stay focused…………I may need to rally the troops……..if you can’t keep up with the updates…….we’re leaving you behind…..sorry.
Scott
P.S. Just kidding about leaving you behind…you can always go back and read the past journal updates if you are too lazy and slow to check on us each and every day at least 10 times. I mean…we’re only fighting cancer here…I’m sure you have much more important things to do with your time…..like playing on Pogo, or watching TV……..or napping…….so don’t worry about us…we’ll be fine.
Thursday, May 10, 2007 9:10 PM CDT
Well….we’re home from testing. We were fortunate to get an early test time (7am), so we got out of there very early. The radiologist was able to read the test and give our doctor the results today.
Unfortunately, Zachary has new tumor activity on his left hip. His old sites (spine) are stable….no new growth or improvement. But, the new spot on the left hip is obviously worrisome. Our doctors feel that the chemotherapy has stopped working. We have been given three choices of treatments.
1). Implant a new port, and do (a slightly different version of) the treatment that we looked at several years ago when Zachary first relapsed. The good news with this choice is that it could be done locally. The bad news is…….surgery for a new port, and lots of pain and reduced quality of life.
2). A phase II treatment that comes in liquid form that is only available in a few hospitals……the closest of which are Mississippi and Kentucky. We could probably get away with a week or so at their facility, and then return home to continue taking the meds……and have our local doctor monitor Zachary.
3). A Phase I treatment that comes in liquid form that is only available at NANT (see: www.nant.org) facilities….the closest of which is Atlanta (Emory). (Where we have family.) The good news is that it comes in liquid form and does not need to be given IV. Also, we would be able to (probably), spend a week or so there, and then return home for continued treatment. The bad news is that in adults, it had nausea, vomiting, diarrhea, etc.
This sucks…..in case you were wondering….this sucks a lot!
Scott
P.S. We are supposed to call the doctor tomorrow to let him know which way we want to go……Zachary has been off of treatment for five weeks because of our belly sidetrack problems……we need to choose…and move forward.
P.S.S. The doctors have ordered an M.R.I. of the hips to get a more detailed picture of the new site. We will be doing that either tomorrow or Monday.
Tuesday, May 8, 2007 7:07 AM CDT
We read the guest book entries every day. We love to see the comments from all over the country (and the world.) Sometimes they make us laugh, sometimes they inspire us, but mostly they comfort us with a feeling of being connected to a large community of caring folks that follow our drama.
Occasionally, there is an entry that will prompt me to write a journal entry…..like today. This following entry was posted the other day, and after reading it, by pure coincidence, I read an article in the newspaper that got me thinking……………
Here is a small part of the entry:
“Gosh I have been reading Zachs journal forever and I feel like I missed something...I thought Zack was off treatment? I guess I need to re-read!”
We have MANY friends and customers that see Zachary and assume that because he has a full head of hair, is in school (until about 3 weeks ago), and is looking good……that he is out of treatment. This has repeatedly produced an interesting dynamic in the conversations that we end up having about young Zachary.
All of that coupled with a recent story that I read about a woman that lied about her child having cancer to raise money has me wondering about what people that don’t see what we face each day…..must be thinking.
Here is a brief recap of where we are:
Diagnosed: 3/16/00
Finished Treatment: 11/20/00
Relapsed (restarted treatment): 2/11/02
That is it! You will notice, (or you won’t, and I will have to point it out), that since my birthday in 2002, Zachary has been on treatment. That is five years, two months, and 27 days. (Not that I’m keeping track.)
So…….why is it that Zachary has all of his hair?
Why is it that he has been able to stay in school for most of this year?
Why is it that he rarely has hospital stays for problems relating to treatment?
Why do most relapsed neuroblastoma kids die within the first year of relapse?
Why do most relapsed neuroblastoma kids endure horrible quality of life after relapse?
Why, why, why, why, why, why, why????????????
The simple answer is this………..”I don’t know.”
I wish I had answers for everyone…..I wish I could transmit my thoughts into others, so that I wouldn’t have to flip the mental coin every time that someone asks me, “How is Zachary doing?”
And what exactly is the mental coin….you ask?
(You didn’t ask?...........oh well…..here is the answer.)
The mental coin is flipped when I try to decide whether to say:
1). “He’s doing great!” (This is both true…and misleading…at the same time………relative to most other kids with his illness, he is doing “beyond” great. But, in comparison to kids that do NOT have cancer and do NOT need to take chemotherapy 10 days out of every 21, and do NOT need to do testing every time he gets a small pain or anomaly, and do NOT need to be constantly looking out for new therapies and treatments….well………then I suppose he is NOT doing “beyond” great.)
2). “(Insert long complicated explanation of his current treatment, multitude of doctors visits, hospital stays, testing, testing results, etc.)” Usually, when I take this approach, the person listening gets this glassy eyed look that conveys to me a sense of regret for having asked in the first place. I can almost hear them saying, “I didn’t want to go to medical school today….I just wanted to hear you say ‘He’s fine.’……….I didn’t REALLY want to know what was going on.”
So there you have it……..at the end of the day, there is no good answer……..or question for that matter. There is no wrong or right………..we are not offended by questions….we welcome them……but sometimes, if you ask a question……..be ready to get an answer. And if you don’t want to risk getting an answer that you don’t want to hear………say something like; “I hope he is doing well….we think of him often.” Or “We’ll add him to our prayer list.” Or something along those lines.
As for the parent that lied about their child having cancer to make money……..I don’t even know what to say about that. What does it say about a person that looks at a situation like this and thinks to themselves….”WOW, they are SO lucky….people are just falling over themselves to help them, and give them money….if only MY kid could have been lucky enough to have gotten a life threatening illness…boy, life is just NOT fair.” That is one demented and twisted mindset……….to that person I guess I would say this:
“Good luck in hell….dress for summer…..it’s hot down there!”
Scott
P.S. We leave tomorrow for Ft. Myers for two days of testing. This week makes five without chemo or treatment……..we are still without a diagnosis for the belly pain. We are hoping that this testing will assist us in making a decision on future treatment plans.
Monday, April 30, 2007 7:05 PM CDT
Why does it seem like lately….every time that I promise news by a certain date…….the date arrives….and then there is more waiting for yet further news? Oh…..yeah…..welcome to our world!
So today was supposed to be the “big” day. We were scheduled to see our oncologist and the GI specialist….to make a determination about whether or not to restart the chemo. Well…..the oncologist is still able to find an area on Zachary’s belly that is sensitive to touch, so his recommendation was to NOT restart chemo until we’ve had our MIBG test done over in Ft. Myers. So, I immediately got on the phone with that doctor’s office and asked about the possibility of going over next week for testing. Luckily, the doctor was standing right there and got on the phone. I gave him a quick rundown as to what we where hearing over here, and he agreed. So, we are scheduled to be over there Wednesday and Thursday of next week for testing…..and then the following Monday, our local oncologist will see Zachary….and hopefully we can then make an intelligent decision about where we go next.
Meanwhile, the GI doc examined Zachary and also was able to find a small area of sensitivity….so he ordered yet another ultrasound of the lower right belly for that same Monday after we get back from Ft. Myers. He wrote the order asking for a “wet read” which means that he wants the report in less than the normal 5 weeks that it would take from our “wonderful” radiologists. We still have our ace in the hole…….I’ve saved the phone number for the director…and she introduced herself to us last Thursday while we were there for Zachary’s X-ray with contrast….so now I just call her and let her know that we are coming in for a test that we REALLY need the results for quickly….and she takes care of it. (I shudder to think what these newly diagnosed families do…..there no longer exists a “friendly” atmosphere on the oncology floor like there was years ago. We were there for four days….and it was so, so sad….to see young kids all alone……with no one coming around to keep them busy as much as they used to. Rebecca and Zachary took one little boy under their wing and played with him. But, I am convinced that the changes that were made at that hospital have hurt the more recently diagnosed families. It is just sad.
Anyways….sorry about that little side track there……..where was I? Oh yeah……..so….we head over to Ft. Myers next week…hopefully we get results by Friday, or Monday at the latest. And then we make a decision as to whether or not to continue with this chemo…or to travel to Atlanta to get onto one of these two experimental pill studies.
The GI doctor said something interesting about Zachary’s rapid bowel system. (He broke the record for the contrast exam by the way)….He said that some long term chemo use can cause nerve damage in the digestive system that would lead to a “faster” bowel system. And since we know that there aren’t many kids that have been on this chemo for this long…..there really isn’t too much long term data to give us the answers to the riddles. We ARE the guinea pigs. Oink, oink. (I know…wrong kind of pigs.)
So after next week, Zachary will have been off of chemo for a total of five weeks. (1 normal week off, two missed weeks of chemo, 1 more normal week off, and 1 more week of missed chemo.) THAT does have us a little bit nervous. While we don’t want to be giving him something that may be harming him, we DO feel somewhat helpless knowing that he is off of treatment for this long.
If fighting cancer didn’t have the ups and downs and all of the drama……it wouldn’t be any fun!
Scott
Wednesday, April 25, 2007 7:09 PM CDT
No news yet on the belly thingy….(that’s a medical term…sorry if I made you feel medical jargon inadequate there…but us pro’s use the correct terminology when we’re discussing medical terminology….uhh….stuff.)
So…anyways…….his belly thingy has been about the same, so tomorrow I am taking him for an upper and lower GI X-ray with contrast. He’ll have to drink some yucky, thick, contrasty, stuff, and then they will take X-ray pictures of his insides and stuff, to see what is going on with his belly thingy pain……….
The oncologist is hoping to get a report tomorrow from the radiologist. HAAAAAAAAAAAAAAAAAAAAA
(What a comedian.)
We have a better chance of winning the lottery…….every week… for the next year…..in every state…….than we do of having these films read in a timely manner.
(It’s a good thing I saved the direct phone number for the director of radiology……….I’ll be calling her tomorrow.)
About 5 years ago or so…..when we were staying at the hospital for treatment, I had a bad experience with a local fast food restaurant. (I actually may have written about it years ago…I just don’t remember.) Anyhow…..without naming this restaurant….let’s just say that IF you were in NYC, and IF you chose to take public transportation, and IF that public transportation was NOT a bus or cab but a train-like vehicle that ran UNDER the city, and IF that train-like vehicle that runs UNDER the city had a name…..like…..uhh…SUBWAY….well,
Then you theoretically would know the name of the fast food restaurant that I am speaking about. So…where was I before I started NOT naming SUBWAY as the fast food restaurant that is featured in this story?.......oh yeah…..so I had a problem years ago, and I actually spoke with the owner and conveyed my problem. He offered to give me a free sandwich, which I declined. I find that when you say something like this, “I really didn’t call to get free goods from you, I just felt that as an owner, you would want to know what was happening in your establishment when you were away.” That drives them CRAZY!.....because then they know that you are NOT some scam artist….but a REAL customer that is truly pissed about something.
So…..I hadn’t been back in many years…..not because they sucked or anything…..but we just hadn’t been staying in the hospital that much…..luckily. So, last week, we of course were there for several days. The one night, I was running late getting there and hadn’t eaten yet…..I offered to pick up dinner for Rebecca while I grabbed something for myself. We agreed on that unnamed restaurant. (Now….for those of you unfamiliar with our hospital, it is located just east of a VERY rough neighborhood. This establishment is smack dab in the middle of this area.)
When I walked in, there were no other customers….just one guy finishing up paying…no one else in line....or eating. There were two employees there…a young man and a woman. I walked up to order, and the woman came over to see what I needed. (Rebecca had wanted an Italian on white, so I decided that I would make it easy, and order the same thing…..and just have them put different veggies on each of our halves…………..seemed like a good idea.)
I ordered a 12” Italian on white, and the woman cut the bread, opened it up, and started to lay out the various meats………she got about half way through this portion of the sub building process and stopped. She took a deep breath, turned to the young man behind the counter with her…and started screaming at him for something that he had said to her earlier…..like BEFORE I WALKED IN!
He didn’t respond….so she went back to building my sandwich. She successfully got all of the meats on there and then slid the sandwich down to the veggie station. This is where things went horribly wrong. I ordered lettuce on the entire sandwich, along with green peppers. Then, I said, “Please put onions and tomatoes on half only. Now…..I’m no Rhode Scholar or anything….I didn’t graduate from M.I.T., or Harvard…..I don’t have an advanced degree in astrophysics….or laser technologies……..but if I were making a sandwich…and someone asked me to put something on only half……….I’m fairly certain that I would know to choose a half from a left to right perspective as the sandwich was laying in front of me…..NOT a half length-wise….as in….across the entire length of the bread…so that when the sandwich was closed, the ENTIRE sandwich would be covered with something that was requested on ONLY HALF!
I calmly said, “No….I just wanted those onions and tomatoes on half please.” “I DID PUT THEM ON ONLY HALF.”
(My head exploded at this point in the process…..and I lost about 5 minutes of real time in my memory….maybe while they were cleaning up my brain matter…I’m not sure.)
As she was trying to justify what quite possibly was the dumbest mistake a fast food worker has ever made….in the history of fast food workers around the planet…..she was flicking onions and tomatoes towards one side, in an attempt to make it look the way it was supposed to. At about this time…I must have had a look of utter astonishment on my face…..because she looked up at me and said, “WHAT?”……, to which I replied, “Nothing….it’s looks great.”
So she finished the debacle that would turn out to be my dinner, and THEN things got bad. She slid the sandwich down and wrapped it up for the guy to ring me up at the register. Before taking my money……….he turned slightly away……removed his grill.
OK……….there may be some confusion here…….yes….I typed the word, ‘grill.’ This doesn’t seem to make sense in this context. Obviously this man was not wearing a barbecue device on his person.
A ‘grill’ is a metal flashy looking retainer-like device that some younger individuals are placing in their mouths to make it look like they have had expensive metal dentistry implants or dental work. I must be getting old….because of ALL of the stupid things that kids these day are doing……pants that are too low and allow their underwear to be seen, shoes with the laces untied………..these ‘grillz’ are by FAR…the most idiotic thing that I have EVER seen. There are millions of people that spend thousands of dollars each year in an attempt to have white, clean, even teeth….and yet….there is a whole generation of younger folks that are trying to make their teeth look…..well…….worse! These things have fake gold or silver…..even fake gems in them…………….AHHHHH.
So……..genius boy behind the counter removes his oral display….holds it under the sink….then sticks it BACK into his mouth….and then turns to me to collect my money. Had the woman NOT have already wrapped up my sandwich while wearing those plastic gloves…..I would have vomited all over his cash register.
Scott
P.S. No….I have not called the owner yet.
Sunday, April 22, 2007 8:11 PM CDT
Well…..we got home Thursday afternoon. The doctors decided to release us…even though they never did figure out what was causing the belly pain. We held off on the chemo thing for last week, and the plan for next week is to see the oncologist and the GI doctors on Tuesday to reevaluate Zachary’s belly and to decide whether or not to resume chemo from there onward. In the meantime, I emailed a doctor in Philly that is in charge of a Phase I protocol for relapsed neuroblastoma kids……I don’t have a ton of information about it, but it is a NON-chemo drug that is taken in pill form. So, in that sense it should be easier on his system….but, it is being given in dose escalation….meaning they are trying to determine how much children can tolerate before experiencing adverse reactions to the medicine. So……that kind of sucks….but if we can’t go back to our current meds….then beggars can’t be choosers.
Over the weekend, things went pretty smoothly. Zachary didn’t complain about belly pain…..he wasn’t nauseous, and he didn’t have any diarrhea. He’s been drinking a lot of fluids and staying pretty well hydrated. We are keeping him out of school until we get some answers about what has been going on in his belly. The last thing we want is for him to be at school and have to deal with either of the two nasty symptoms that he has been experiencing lately.
Meanwhile……we need to reschedule our Ft. Myers testing trip. We will need to wait for at least a couple of weeks, to make sure that the chemo isn’t the culprit for the belly problems.
So there you have it…….just the same old boring news from our gang.
Scott
Thursday, April 19, 2007 11:04 AM CDT
I am in need of a three sided coin……or….an invite to appear on “Let’s Make A Deal.” Yeah…..that would we be good…they could have me on there….and present me with three curtains to choose from…..either that or the three sided coin thing would work…it doesn’t matter……one curtain would have a gall bladder problem behind it…..one would have irritable bowel syndrome behind it, and the last one would have an inflamed intestinal tract behind it.
And WHY am I presenting these three latest hypothesis to you in this manner….well…..because we had three different doctors in to see Zachary today……and we got three different “guesses” as to what is going on in his belly.
The good news is that the pain in his belly has slowly improved. He is NOT as sensitive to touch as he was yesterday. Also, he is eating better…..and they have slowly started to wean him off of IV fluids to see if he can hydrate himself adequately. Lab results on his stool continue to come back without any information that is helpful or definitive. They are even talking about releasing him as early as Thursday if things continue to improve.
Obviously, all of this is good news……and yet……I am not happy. Do I LOOK like I am smiling……well….you can’t see me….so you’ll have to take my word on this….I am NOT.
This is why I am not happy.
While improvement in Zachary’s condition is wonderful, and while I can accept that you don’t ALWAYS get a diagnosis with a “cure,” Rebecca and I seem to be the only folks that are able to look into the future and see that there are some real areas of concern that have not been addressed by our medical professionals.
WHAT ABOUT HIS CHEMO?
He is supposed to be on chemo this week……starting two days ago. Obviously he can’t be drinking chemo when there are unresolved digestive/belly issues at hand………and seeing as we have voluntarily rearranged his chemo schedule in the past to work around travel dates some of you may feel this minor delay isn’t a big deal…..but here is the problem. We have still NOT received any information regarding the possible toxicity or long term negative effects on the digestive tract by ingesting this chemo. (I’m working on getting this info.) So…how long do we wait before going back on chemo? What if the chemo is causing these problems……..where do we turn to next for treatment? Even if the chemo is NOT causing the belly problems…….he is hypersensitive and very prone to vomiting while taking this chemo…..he can’t afford to keep getting dehydrated……a trend that has become very worrisome to us.
(Lots of ‘ifs’, ‘maybes’, and ‘what next’s’.)
The kidney function test (the REAL one) results came back today. The left kidney is functioning at about 6%, while the right kidney is functioning at about 97%…….so the left one is basically superfluous. Meanwhile…..when they did the CAT scan the other day, they were UNABLE to locate the appendix……so we’re off hunting for THAT organ as we speak……if you see a photo of his appendix on the back of milk carton….try not to be alarmed.
(Actually……we were informed a day later that the appendix would only appear if there were an issue with it.)
It’s too bad that there isn’t a way for the doctors to communicate with the patients and their families…..you know….somehow inform them of what is going on…….if only there were a way….so that families wouldn’t be constantly freaking out and worrying about missing organs………odd test results…..hmmmmm…maybe someday an invention will come to pass that will allow for physicians to use a writing instrument or recording device of some sorts to convey the information in a coherent manner so that the families would know what was going on with their child…..
…..if only!
Scott
Monday, April 16, 2007 6:52 PM CDT
Well….well….well……what a difference a few days make.
When we last saw our super hero Zman….he was running laps around the relay for lap track and playing with friends………with not a worry in the world.
BUT WAIT…..the evil force that controls illnesses in children was lurking in the shadows….waiting to pounce on our super hero when it sensed a moment of weakness.
Zman was riding the high of ONLY spending one day in the hospital…so he was not on guard over the weekend………Saturday came and went without incident….but Sunday would prove to be much different.
Most of Sunday was spent moping around……..we were scheduled to help out with a fundraising event about 30 minutes from our house……and about an hour before departure time….Zachary started to complain of belly pain. We can never tell when his belly pain is real….or a figment of his ‘wanting to get out of doing something we want him to’ imagination. So…..I offered to stay home with him and work on homework…if he wanted to skip the event. He decided to go.
About 15 minutes after arriving….he was firmly planted in the bathroom….complaining of more belly pain. As luck would have it…..one of friends that was there had her kids helping with delivering some items…and after they were finished, they offered to take Zachary to their house to hang out and play games……..he’s known them for quite some time, so it seemed like a good idea.
Rebecca and I got finished about 2 hours later…….and we headed over to pick Zman up……unfortunately….the evil force had already found it’s way into our lives yet again. Zachary had vomited twice…….all “green bile” looking stuff. (Oh….by the way…if you’re eating while reading this….you may want to stop before reading that last bit…..oopps……or this next bit too.)
So we headed home…..and before going to bed….he vomited again…..more green stuff. Hmmmmmm…….here we go with dehydration again. He slept through the night….but this morning he vomited again….so Rebecca called his oncologist and got him an earlier appointment than the one that we already had scheduled. During the examination…the doctor was able to see how much pain Zman was exhibiting when touched on his lower right abdomen. Hmmmmm……classic appendicitis symptom. But….no fever or whacky blood counts. The doctor ordered a CAT scan and sent him over to the hospital for fluids and the test.
The test took place…….and then more fun started……bloody diarrhea! Meanwhile….I’m freaking out because we still hadn’t seen a surgeon for a consult yet. Of course….it was the end of the work day….so doctors are fleeing the scene as fast as their BMW’s will take them away from here. I show up on the scene just in time to witness back to back bloody stool deliveries……you know….just another day in paradise.
Meanwhile….I get a call from my medical phone a friend again, (dad)…and we’re working on diagnosing Zman’s illness with his lack of oncology experience…and my lack of…….well….my lack of ANY medical training. BUT, far be it for that to stop me from making a diagnosis. So…I’m in the middle of that conversation….and by sheer luck….our oncologist from the west coast of Florida calls in. (I had left a message earlier in the day informing his office that we might miss the MIBG appointment due to unannounced new illnesses/developments.) So……being the GREAT guy that he is, he asked for a quick rundown on what was up with our Zman. Within seconds he not only provided me with a possible diagnosis…..he provided us with a diagnosis that does NOT require surgery and is relatively easy to treat.
Clostridium Difficile.
Better known as C diff.
Zachary had this about 5 years ago. It is most commonly caused by taking antibiotics that kill off bacteria fighting cells in the stomach and intestine. (You may recall that Zachary has been on oral Augmentin for a little over a week.) If you were to search this out on Webmd….you would find that it usually pops up about 4-10 days after taking antibiotics. The treatment is…
…….DIFFERENT antibiotics. (Go figure.)
The nurse got a stool sample, (more liquid mixed with blood than anything)…….once again…if you were still eating…….you’ve probably stopped now…..sorry. As for a final result….well it takes about 24 hours to get stool sample results back……so good luck with that. Meanwhile, because he has NO fever, GOOD blood counts, and pain only when touched in the belly…..they have decided to wait until tomorrow to have the surgeon examine him. At that time…..the pediatric GI guy will also be here. If they agree that it is most likely C Diff…..then they will probably start him on the new antibiotics….and then confirm the results when the stool sample results come in.
Best case scenario…….we’ll get discharged within about 2-3 days.
Meaning….we are rescheduling the MIBG for a future date.
Scott
P.S. This illness, this child, this family, and this drama are ALL a work in progress. If you are reading this journal entry, and feel at ANY time that maybe you have missed something…..then you most likely HAVE. Stop reading…..go to the journal history……and find the entry/entries that you missed. When crap is happening to us….I tend to update more often. I’m guessing that many of you are expecting news tomorrow night at some time, so there will probably be a new update before midnight tomorrow. If there isn’t one……don’t assume the worst…..just assume that I am a lazy good for nothing bum that didn’t feel like updating. If you’ve got our cell phone numbers….call and ask for an update…..if you don’t……well…suffer with the masses.
Saturday, April 14, 2007 6:12 PM CDT
The missing kidney riddle has officially been solved……..sort of…..well…..not so much.
(If that first sentence means absolutely nothing to you………then more than likely you missed my last journal entry…….for the sake of all of humanity…..or at least your ability to follow along…..I suggest that you STOP here………GO BACK to my last journal entry……and GET CAUGHT UP!)
For the rest of you….read on.
As I wrote before….the kidney mystery started at about 8:30PM with the genius tech that was performing the ultrasound. Rebecca and I both slept REALLY well Thursday night, NOT! So…..Friday morning….before the doctor showed up for rounds……the nurse was able to pull up the official report in her system that showed the doctor’s notes and impression from the ultrasound. Here is the exact text from that report:
“Real time ultrasound examination of the abdomen shows no evidence of metastatic deposits in the liver. The liver, spleen and pancreas appear normal. The kidneys also appear normal. No evidence of retroperitoneal lymphadenopathy.”
(Notice that the word 'kidneys' is pluralized...meaning more than one....or both in this case.)
So there you have it……..the tech must have just read things incorrectly during the exam. Or not……..the plot thickens.
The oncologist showed up for rounds…..and having been informed the night before about our little kidney mystery, he had taken the proactive step of printing up Zachary’s old MRI scan reports from back in 2001 and 2002………pretty much the follow up scans from the year after diagnosis.
The earliest one available had this to say about the kidneys:
“The right kidney appears normal in size and enhancement. There is severely atrophic or hypoplastic left kidney.”
The next scan….from about 7 months later reads as follows:
“The right kidney is within normal limits. The left kidney remains relatively atrophic with only a small amount of contrast excretion.”
OK….quick vocabulary lesson……..
Atrophy (or atrophic as used above) – The degeneration or wasting away of an organ or part of the body, as from disease or disuse.
Now…….at this point in the story I should mention that BEFORE getting copies of these reports….I had already used my “phone-a-friend” to get the low down on how a kidney could disappear. My resident expert (dad) informed me that loss or lack of blood flow could cause a kidney to atrophy or die. That knowledge….along with the knowledge that Zachary’s original tumor was in his left adrenal gland….which is of course attached to the left kidney, was just enough information to make me paranoid that the original surgery hadn’t gotten all of the tumor….and the disease had come back to claim the left kidney.
Fast forward to our oncologist reading these reports to us and like a light bulb going off…I remembered that back in 2001 and 2002….they HAD given us copies of those reports….and we had briefly discussed the fact that Zachary’s left kidney was probably not fully functioning. If I remember correctly……at the time….we had bigger fish to fry…and one healthy kidney was good for us………the left was still showing some functionality….so there was no reason to do anything.
SO………my question to the oncologist was, “Could the disease have caused the atrophy in the kidney…since the tumor was right there in the neighborhood?” His response was, “That is not common……but, do you remember how large the tumor was?” Of course I did, so I told him, “Yeah…it was about the size of a green apple….or just under the size of a tennis ball.” Having heard that, he said, “Well…..if it was that big…it could have cut off the blood flow to the kidney and caused it to atrophy.”
It was all beginning to make sense……we had just forgotten about the left kidney not being fully functioning….so the tech’s inappropriate comments had caught us off guard. BUT WAIT….it gets better…..if you were paying attention, then you will have noticed something that does NOT add up at all. The first report that I quoted from in this entry was the one from the doctor at our hospital two days ago rendering his opinion about Zachary’s ultrasound………you don’t have to scroll back….I’ll retype it for you:
“The kidneys also appear normal.”
????????????????????????????????????????????????????????
Well……he may not be a REAL doctor….but he DID stay at a Holiday Inn last night.
You know….we are scheduled to go over to Ft. Myers next week for our 6 month MIBG test…..a test that we USED to have done in West Palm Beach at our local hospital. But having screwed up the test soooooo many times in the past…..we just stopped having them done here. While Zachary was in the hospital the other day, Rebecca and Zachary ran into the tech who used to perform that test for us…….Rebecca asked him if things had improved, and he told her, “NO…you are MUCH better off going elsewhere for your exam.” AND HE IS THE GUY DOING THE TEST!!!!
I believe another important piece of information here is that unless Zachary is from another planet (and we not ruling that out), then humans do NOT re-grow kidneys! So his atrophic left kidney from 2001, and 2002…..is at BEST still atrophic and very low functioning….and at worst…….not functioning at all and superfluous at this point. SO, I’d like to get my hands on the “Kidneys also appear normal” doctor so I could clean his glasses for him…….or maybe take away his glass of whiskey so he could concentrate on his job.
Now that we know the left kidney is either useless or close to it, we will need to see a nephrologist so we can get a kidney function test to make sure that the left kidney is not causing problems. If it is just dead….and minding it’s own business….then we’ll leave it alone…..if it is acting up….then it needs to put into time out….have it’s Ipod taken away, and be grounded for eternity.
So there you have it…….the kidney mystery wrapped up in a nutshell……….the ‘NUT’ being the doctor that incorrectly read the ultrasound of course.
So I guess Zachary has been living with just one good working kidney since the tumor grew so large….probably back near the end of 1999 or the beginning of 2000. I haven’t had a chance to do any research into any changes in diet or hydration that we need to focus on as we move forward……I’m guessing that the hydration thing is big….but I’m sure the nephrologist will want to weigh in on that issue.
Scott
P.S. Zachary got home from the hospital about 30 minutes before our local American Cancer Society relay for life started…..we headed over…and he got to walk the survivor lap with his buddy Ty-Michael….they played and hung out for about 3 hours…….it was a good night!
Thursday, April 12, 2007 10:25 PM CDT
I find myself in an awkward position…….sitting on a very short bed….writing a journal entry…..while young Zachary is sleeping about three feet away getting IV fluids and antibiotics….and Rebecca is about two thousand yards away sleeping at the Quantum House.
Yep….you guessed it…..we’re in the hospital!
How did this happen you ask?
Oh….you didn’t ask?
Well….tough luck……I’m more than likely going to tell you anyways.
Zachary….as you all know….had that bout with back pain several weeks ago. That went away…..but he started having pain while peeing. The doctors thought that maybe he had a urinary tract infection….so they prescribed oral antibiotics…….that didn’t seem to help.
Meanwhile…back at the ranch….Zachary has been experiencing increased nausea and vomiting…..but…having been on oral chemo for the past two years….how does one know WHAT is causing nausea. With good counts and no fevers……we have been somewhat on cruise control.
Today….Zachary vomited again this morning before school….and then he was complaining of dizziness. Rebecca called the doctors…they suggested giving him fluids, (especially since he doesn’t drink enough),…..and there you have it….he’s in the hospital.
But wait…..it gets better…..NOT.
The urine sample came back negative for the UTI (urinary tract infection.)
So, the doctor ordered an ultrasound of his bladder….to see what was what.
That test requires no food for 6 hours, so they weren’t able to administer it until about 8:30PM…..Rebecca was with him.
This is where the fun begins. I’m thinking that the best thing for me to do here….would be to give you some examples of what NOT to say to a person while engaging in conversation…..especially if you are trying to avoid putting your foot into your mouth.
Example #1.
You are introduced to a woman with a rather large stomach, and you say…
“When is your baby due?”
….and it turns out the woman is NOT pregnant….just fat.
Example #2.
You are introduced to an older man with a younger woman, and you say…
“Your daughter is very lovely.”
….and it turns out that the younger woman is his younger girlfriend.
Example #3.
You are a technician doing an ultrasound on a young cancer patient with his mother present………….the patient has endured 7 years of battling a horrendous disease and has been given little hope by doctors too many times to count………while doing said ultrasound…you notice an anomaly and you say…..
“When was your son’s left kidney removed?”
…..and it turns out that it was NEVER removed!
So……now you have a mother in panic……a mother with lupus that needs stress like hospitals need more idiots……..and you have a 13 year old boy that hasn’t been in a hospital in quite some time…..seeing a panicked look on the two adult faces in the room……………..I’m guessing that all of you are painting a pretty ugly picture in your heads right about now.
So….of course…..it’s 8:30PM at night…….so NOTHING definitive is going to happen until tomorrow……..by chance…the oncologist calls into the floor and is told about this……..he obviously doesn’t remember any kidneys or other organs being removed…….and says we’ll look at the final report tomorrow.
So….the good news is that we get to worry about this ALL NIGHT!
Scott
P.S. Darn teenagers….if they’re not chasing girls, or sneaking Ipods into school….they’re losing their vital organs.
Tuesday, April 3, 2007 7:31 PM CDT
BOO HOO………..”no update for over two weeks”…….that’s what you all get for not offering any help with my work problem!
(OK….the reality of it is that I have just been too lazy to write an update.)
As for the whole April Fool’s thing…….well…..everyone is expecting it….so I didn’t want to do another lame thing……..I considered the whole, “I’ll give you three stories and you have to determine which one is true,”….thing……but I just didn’t have the energy for it.
I will give you this little teaser though.
There is some interesting news on the horizon for us…..but it may be a month or so before I can write about it…….so…..suffer!
Meanwhile back at the ranch…..Zachary’s back pain is now completely gone (ptuii, ptuii, ptuii…..kaynahorah.) (You see….I’ve learned.)
We just made our reservation with our doctor over in Ft. Myers for the week of the 16th. Zachary will get his MIBG scan on Thursday of that week….and hopefully we will get results quickly so that everyone doesn’t have to be tortured. (This is our 6 month testing.)
We had a wonderful weekend at Boggy Creek………….Boggy is always a blast! We met some great new families….we got to hang out with some old friends…..it was just a perfect weekend.
Last weekend we were over in Tampa……..sadly we saw our Tampa Bay Lightning lose to the Ottawa Senators 7-2. They’re still in the top 8 to make the playoffs, but they need another win or two to make sure they get in.
Congrats to the Florida Gators for winning their second consecutive basketball championship! I stayed up last night and watched the game…..they played great down the stretch….holding off Ohio State as they tried repeatedly to make a comeback.
So…..Mr. Zachary has found his calling in life……it is unequivocally this: He seeks out and finds the most attractive girls/women that he can find……..and then he makes sure that a photo is taken with them….and him………cozying up. He IS the master of this. He has NO fear………there is NO woman on the planet that he sees as “unapproachable.” The evidence of this skill is now featured in a collage available for your drooling…I’m mean viewing….in the photo album.
Remember….jealousy is an ugly trait……..I should know………I feel it every day.
Scott
Sunday, March 18, 2007 3:11 PM CDT
Back on the 10th of the month…..I wrote a journal entry….and in it I mentioned how well things were going……..and of course…..I FORGOT to say Kaynahorah…..or to spit three times.
You would think that I would have learned my lesson.
Two days after that entry, Zachary started having back pain….actually he started having pain all over his body……calves, legs, lower back, upper back, shoulders….you name it, it hurt. He did not have any fever with this pain……..so that was a good thing. AND, the fact that the pain wasn’t localized….indicated that it probably wasn’t a cancer thing, but more likely a flu-type thing.
We got him an appointment with his oncologist for Wednesday and he got examined. The doctor agreed that there were a lot of bugs going around and that this didn’t appear to be a cancer thing. During the examination the doctor noticed that Zachary was a little bit dehydrated. That helped to account for some of the muscle pain. Zachary admitted that he had diarrhea over the past few days…..a detail that he had failed to inform us of earlier, so that explained the dehydration. Over the next few days, Zachary was drinking more and started to feel better….now he only has some minor remnants of the aches and pains….so we’re hoping it was just a bug.
Thursday was Rebecca and my 9th wedding anniversary, and then of course, Friday was the 7th anniversary of Zachary getting diagnosed……….we like having those two close together…that way we never get to fully enjoy an important day without getting slapped back into reality the next day.
So…….other than that…..we are trying to get back to being on cruise control with our lives.
As long as I am writing this entry………and assuming there are still a bunch of you out there reading this……….I’m gonna take a chance that maybe someone can help me with a work related question that I have.
We are thinking about purchasing a tablet pc for our company. I have never used or seen on of these up close. I also will be needing an invoicing program to use on the tablet pc. This program must have the ability to access my customer base (which I assume will be stored in the memory), and it must be able to access my catalog, (once again….I’m guessing there will have to be a database set up.) I’ll be needing this to be an easy to use quick invoicing program. After writing the invoice, I will be emailing them back to my home office so they can be processed and edited on the home office computer.
Anyone out there that has ideas on this………I would greatly appreciate your input.
Scott
Saturday, March 10, 2007 7:39 PM CST
Luck (n) Good fortune; the force or power which controls odds and which brings good fortune or bad fortune.
Happen-stance (n) An event occurring by chance.
Fate (n) The force or power held to predetermine events; fortune; inevitability.
Why the vocabulary lesson you ask?
Oh……you DIDN’T ask?
Well……I’m telling you anyways…….get over it.
Here’s the thing…………I’m willing to bet that if I were to go back and read all of my old journal entries I would find many, many entries where I wrote about how lucky we are to be enjoying Zachary’s great quality of life. Sure…..I complain about our battles, and I write about his ups and downs………but as all of you know…..I have said many times that we know how lucky we are.
There are two local organizations that help families that have children battling cancer. Both of them have been a HUGE part of our lives since the day we got diagnosed. We stay in “constant” touch with them…..we rely on them for a variety of things.
We got an email from the child-life/therapist from one of these organizations the other day. This particular woman has been by our side literally since day 1. She has sat with us while Zachary was in surgery…..she has helped us numerous times with getting Zachary back into school……I could go on and on….but you get the idea. Anyhow, back to the email. Barb, (that’s her name…Barb)……..stays very well informed on any new and upcoming therapies that might be beneficial to the kids…………so she emailed us with the name of something new she had come across. She also provided the names of a couple of the universities where she believed the research was taking place.
Being the inquisitive type….I Googled the name of the drug and couldn’t find anything. Then…..a few days later I was rereading the email and noticed that Texas A&M was one of the places mentioned. So….I got to their web page and used their search engine…and there it was….an article from 11/04 about the exact thing that Barb had mentioned. At the top of the article was the doctor’s name and email address that was doing the research. I immediately emailed him and explained who we were and asked for any further information that he might have about the drug. He got back to me the same day, and explained that he has received many emails from families like ours over the past year or two…and that they were still doing “early” research….he also mentioned that he thought there was some more in depth research going on in Houston.
Houston.
As luck (there is that word) would have it……I went to high school with a girl who was two years ahead of me……she went on to become a Neuroblastoma doctor………in….
(go ahead and guess)….Houston! We have spoken to her before…years ago…when Zachary relapsed….to get her opinion on some of the therapies that we were considering. But, we hadn’t spoken to her in a few years. SO….I emailed her….and gave her an update…and asked about the new drug……….we are still waiting to hear back.
But….there is more……..and you really need to read the article to appreciate this next part……so here it is:
http://agnews.tamu.edu/dailynews/stories/BICH/Nov3004a.htm
Now…..interestingly enough….for about the past year….to year and a half……young Zachary has been on a HUGE orange juice kick. He has been drinking like 1-2 full cartons/week by himself. And what’s really weird………….the supplement that we take suggests that vitamin C in large amounts is NOT recommended when taking it…..but when Zachary got on this O.J. kick……I just couldn’t bring myself to telling him that he couldn’t have it all of the time. It just didn’t feel right…..I mean….O.J…..is supposed to be good for you……..and it was always hard to find healthy foods that he would eat a lot of…..so we just let it go……..and now we read this article……….and I don’t know…..is it possible that the O.J. has been our guardian angel this whole time?
I don’t know…………..but when you look back at all of the crossroads that we have come to…..and all of the coins that we have flipped to make decisions……you can’t help but wonder if there is some greater force….or higher being…..that is looking down upon us and helping us to make the “right” choices. At the same time…….you ask yourself, “Why us?”…..”Why not the other families?”…………
Is it luck?
Is it happen-stance?
Is it fate?
Have we made it this far because of a strange cocktail that includes chemotherapy, non-traditional supplements, and orange juice?
If you’ve got the answers….then you are WAY smarter than I am.
Remember these two words: Limonoid Glucosides.
I’m hoping they play a HUGE part in our lives so we can get Zachary off of chemo…and get rid of his cancer.
Scott
Friday, March 2, 2007 5:56 PM CST
Two updates in three days……aren’t all of you just special people to get this kind of treatment?
Zachary is having a couple of friends over tomorrow to celebrate his birthday…..he doesn’t have anything “big” scheduled…….just playing video games, riding skateboards, bikes, playing outside etc. The only “odd” thing that he requested is…..he asked me to bring home a poker table and chips so his friends can play a mini tournament. (I deal Texas Hold-em poker a few nights a week to make some extra money. I’ve dealt for some charity events and some private functions……..it helps pay the bills.)
So….hopefully we can have a somewhat uneventful Saturday….without any major conflicts or problems.
On a different note……I am now convinced that we may be entering the “End of Days!” Yes…..the biblical one.
Surely you have noticed some of the signs out there in recent years…..increased global terrorism………earthquakes………devastating hurricanes……horrific tornados……..flooding………..talk of huge asteroids heading towards Earth…..all of these things collectively add up to trouble……BUT…..by far….the most disturbing news that I have received in recent times came today……………..(wait for it…………here it comes…..)………….I am now officially……………………………….old.
Old?
Yes…..old.
How to you mean……”old?”
I mean just that……I am old.
And what has you convinced that you are now….all of a sudden…..”old?”
OK……let’s see…….go to the photo album and check out the new photo (#3)…….it is pretty self-explanatory.
(Go ahead……..I can wait.)
(Jeopardy music playing)
SEE…..I TOLD YOU……..I AM NOW OLD!!!
Any and all laughter will be dealt with harshly…….be careful of what you admit to in MY guest book…..I MAY be old now, but like an elephant…..I have an excellent memory!
Wait a minute……did I just compare myself to an elephant???........Oh great……..now I am old AND overweight…………….that’s it…..I quit.
Scott
Wednesday, February 28, 2007 9:24 PM CST
By a show of hands……how many of you have ever been driving outside of your “home” area…..and you were trying to find a radio station playing something decent? And while doing this…..you found channel after channel of nothing but static?
OK……87%.......sounds about right.
Now…..how many of you have satellite radios?
OK…….22%........more than I thought….must be growing every day.
OK……here is the thing…….we’ve got satellite radios for the cars. Our one car has the radio installed with an FM filter so that you don’t have to search around for a static station…….you get perfect reception no matter where you go…and you never have to change the channel.
NOW….our other car has a radio that is NOT permanently installed. The reason for this is simple…..I am on the road Mon., Tue, and Wed…….in three different cars. Mondays I drive our second work van….Tuesdays I drive my personal car (because both work vans are being used), and Wednesdays I drive the other work van so I can sell product out of it. SO…….I take the radio with me so that I can hear my programs while driving.
NOW…the point of all of this is simple……when you don’t have the radio installed with a filter, you must find a station that is all static, and then you program the satellite radio to match that channel on the car’s radio….and if the stars are aligned properly, you get to hear your satellite channels.
SO…..my question to the world is this……..how is it humanly possible that I am constantly having to search around to find a static only channel….and that when I do, 80% of them don’t work for satellite reception? BUT, as soon as I turn off the satellite radio, there are nothing BUT static stations…….with the radio on…..I get every religious, talk, pirate, BS station known to man………..it is as if ALL of the static channels have disappeared…………AHHHHHHHHHHHHHHH.
OK….so maybe you’re noticing that I am a little bit cranky tonight……well….I just got back from another viewing for a young man that passed away earlier this week. I’ll never be able to wrap my brain around the fact that this disease continues to rob families of their children……..it just sucks.
If you would be so kind….I would appreciate you taking the time to visit Ryon’s page and maybe passing along some words of encouragement or prayer to the family.
www.caringbridge.org/fl/ryonspage
Of course……..all of you know that I could screw up anything at all….given half of a chance………….I showed up at the funeral home and it was packed…..they had me park down the street about a block because they had run out spaces. I REALLY had to go to the bathroom…..so when I got inside……I was looking for the restrooms and I saw the long line of folks waiting to get inside the private room to pay their respects to the family. Next to the end of that line was the table with the guest book for visitors to sign. There was no one waiting to sign, so I quickly did that before heading into the restroom. As I was opening the door of the men’s room…..I overheard two women talking near the end of the line…..and one said to the other, “I can’t believe how crowded it is here tonight.” And the other one replied……(and this is where time slowed down and everything seemed to be going in slow motion)……..”There are TWO viewings here tonight…both for young adults.”
As I entered the restroom, I started to “flip” the mental coin that I keep in my head. While doing that, I was thinking to myself, “Heads I signed the right book…..Tails I didn’t.”
I finished my business……washed my hands…..dried my hands……..(no I wasn’t stalling…I always do that)……and I reentered the common area……….and I moved around the corner to see the OTHER private room…..and there on the table next to the OTHER guest book…..was a sign with Ryon’s name on it. (Tails.)
So some other family is going to be going through their guest book at some point….and they are going to look at each other with that confused look on their faces………..and it will ALL be my fault. Like I said….I could screw up just about anything.
Tomorrow is Zachary’s 13th birthday!
We are very fortunate to be celebrating this milestone with young Zachary.
Tonight’s excursion reinforced that fact……..in a very real way.
Scott
Saturday, February 10, 2007 10:23 AM CST
Welcome to class everyone…today we are going to learn two new words. Please take out your writing books, copy down the two words with their definitions from the chalk board.
1). Logic (n): The science of dealing with the principles of reasoning, especially of the method and validity of deductive reasoning; something that forces a decision apart from or in opposition to reason.
2). Kaynahorah: (kayne-a-hurr-rah) literally, the evil eye. Pronounced in order to ward off the evil eye, especially when speaking of one's good fortune. "Everyone in the family is happy and healthy, kaynahorah." "He'll be 86 in three weeks, kaynahorah." Another way to ward off the evil eye is to quickly spit three times (We're not talking hawking a big loogie. This is more like lightly spitting a poppy seed off the tongue.) "My daughter found a nice guy and it looks as if he's going to propose. Pthui, pthui, pthui."
(That second word is from the Yiddish language…in case you were wondering.)
OK……”why the vocabulary lesson?”….you ask. Well…….it all started a little over a week ago. You see…….young Zachary was NOT responding well to our discipline methods. The theory of course was….that HUGE amounts of time without his precious electronic devices would COMPEL him to change his ways. Sadly………our tactics seemed to only frustrate him more……and throw him into a downward spiral that seemed to have him in a state of mind where he saw no light….at the end of the tunnel.
In other words…..our 58 year grounding was too long. (In reality it was only one month….with a possible good behavior clause after two weeks with no problems.) BUT…..we were seeing an escalation of wrong doing, which continually pushed the two week limit back on a daily basis.
So….after speaking with every known expert in the field of child psychology, I conveyed our dilemma to my older brother during one of our weekly phone conversations. He used to be a Dale Carnegie instructor, and has been in upper management with a couple of large companies. While this isn’t the same as raising a teenager………..it does offer experience in what motivates people……AND….he does have two children that are close in age to Zachary.
His opinion was this…..”While it is tempting to ground a child for a long period of time to ‘drill in the seriousness of their actions’, in business…..you need to offer small victories to get big victories.” In other words….if Zachary can see immediate results and rewards of good behavior……..he may be more inclined to follow that path towards greater rewards.
So…..Rebecca and I….having tried everything else we could think off….decided to change our strategy. We told Zachary this: “Every day you go without an incident at school, we will reward you with your choice of the following……A). One hour of TV. Or B). ½ hour of computer. If you can string together a week's worth of good days, we will return one of your grounded electronic devices ‘permanently’ and then we will continue from there with the daily rewards…..if you mess up….you are back to ground zero.”
Zachary loved this idea…..he immediately got some TV back…….and started to make good choices. We started this last Wednesday, and made it through a week without a problem. He earned back TV full time….and was using his daily reward for either computer time or Ipod time.
All was wonderful in the world of the Finestones!
And THAT brings us to the second word on our list. (Kaynahorah)
This most recent Wednesday was the week anniversary of Zachary doing well….so of course, I started to “write” my journal entry in my head while I was driving about how great we were doing………of course I was too tired Wednesday evening to actually type it in….but I figured I could just do it on Thursday. (Obviously I forgot to utter the word ‘Kaynahorah’, AND I forgot to spit three times…..both HUGE violations of the time-space continuum. This BLATANT act of disrespect for everything holy brought upon us a Zachary failure…….and THAT brings us to the first word on our list……’logic.’
Thursday morning, Zachary walked himself to the bus stop………as I was leaving for work, Rebecca casually said, “Do me a favor…drive by his bus stop and make sure he is there….and not around the corner at the other bus stop where he is NOT supposed to be.”
As I pulled out of our street and approached his stop….I knew immediately that I would NOT find him there…………I turned the corner from there on two wheels……doing slightly over 120mph in the 20mph zone….and then rounded the next corner…….to find young Zachary hanging out with his friends at THEIR bus stop. I slammed on the brakes…..skidded to a stop inches from his nose…..threw open the door…..and made him get in….embarrassing him in front of all of his friends. I did a u-turn in front of them all….so they could see me taking him BACK to his bus stop (a whole 250 yards away around the corner)……….then stopped in front of the kids where he was supposed to be, and made him get out sheepishly….to stand where he was supposed to.
NOW….some of you are probably wondering…what is the big deal? Well…in the big scheme of things…this is obviously NOT as big as some of the other offenses that he has committed. The problem is this…..most of his distractions that have led to serious problems have occurred on the bus or at the other bus stop. The school has a strict policy about wondering to another stop….they want you at YOUR stop…………to avoid just such problems. Zachary knows this……he has been warned many times about this……….and when asked why he wondered over to the other stop…….his response was this:
“Julie told me to”
(Julie being a girl in the neighborhood that he likes…..however…I DID change her name….in the off chance that someone from his school reads this page.)
So my immediate response was:
“If Julie told you to do drugs….would you?”
“No……that’s different.”
(Thus enters the word ‘logic.’…..or lack of it.)
I don’t claim to know everything…..in fact….lately….it seems that I know next to nothing…………..but right now….one of life’s great mysteries to me is this:
I believe in God…..I really do. When God was designing man and woman, at what point did he/she decide that between the ages of 12 and 19….it would be best to remove ALL aspects of logic and reasoning from humans? “Let’s see….. I’ll turn on the hormones……..make drastic changes to their bodies……instill all sorts of wild mood swings and social pecking order dilemmas………AND I’ll remove basic reasoning and logic so that they have NO chance of sorting through any of life’s mysteries or curve balls without HUGE problems…….yeah….that sounds like a good plan.”
Now….FAR be it for me to second guess the almighty……I would never presume to have a better plan…….BUT……..couldn’t we have diluted the effects…….maybe spread out the time a little bit more…but made it easier on them? I don’t know…..I’m just spit-balling here……….what do I know?
So…..Thursday the clock got reset….and we started over. Zachary admitted that it was NOT worth it…to lose everything……and he was good on Friday. Hopefully he will be good all of next week so that our travel day to Memphis on Friday will be easier………I would much rather have him listening to his Ipod then complaining. “Kaynahorah”…..pthui, pthui, pthui.
Oh crap…I’ve got to run….I just spit on my leg….it’s dripping down………
Scott
Sunday, January 28, 2007 9:57 AM CST
OK……….I know you’ve seen these words before, but for those of you that don’t read these updates on a regular basis…….today’s journal entry won’t have the same “impact” if you haven’t read the last two journal entries.
But then again….I can’t seem to control my 12 year old son….so I’m guessing that controlling all of you is out of the question.
Well……one would think that after serving his three day out of school suspension two weeks ago that young Zachary would have learned his lesson……..but NO!
So……one would think that less than one week later…..young Zachary would have learned his lesson for getting three more days…..this time of in-school suspension…..but NO!
While still serving time for his most recent actions (Monday is his last day of suspension,) Zachary spent Friday with Rebecca at her work…..(there was no school.) So…..young Zachary got bored and was hanging out in the parking lot outside of her building. (Lots of kids around…it is a bowling alley.) Well…..being the ever-respectful, mature, well-grounded individual that he is, Zachary decided that when he discovered some empty beer bottles lying around the dumpsters, that the best course of action was to start breaking them.
As chance would have it, my business partner’s in-laws were pulling into the parking lot with his children, and they witnessed the crime………so I got a call on my cell phone and jumped into action. I called Rebecca and said, “Don’t leave work when your done……Zachary was breaking bottles out back and needs to clean them up….I’ll be there in two minutes.”
I arrived to find Zachary sweeping up some broken glass.
When I asked him why he done it………he once again amazed me with his inability to own up to ANY action that he takes……his response was…..
“What was I supposed to do…they were just lying there….and I was bored.”
Later that evening when he woke up from me knocking him out………..just kidding……..I didn’t knock him out………..but it IS possible that the thought crossed my mind.
So…back to sweeping………he was finishing up with the last of the 2-3 broken bottles and he made a comment that, “This is fun!”
Ooops.
There are a variety of buttons that young Zachary has learned to push in my brain………..and if my fingers weren’t so tired…….I’d probably list them here for you, but suffice it to say……….he found one of those buttons and firmly pushed it.
“Oh really…..you like sweeping…..you enjoy it?”
“Yeah…this is fun…..and look……I’m all done!”
“Wrong….you are not close to being done…….go over there and pick up every piece of trash in this parking lot.”
“But I didn’t do any of that….I just broke two bottles.”
“I don’t care….keep cleaning.”
After about ten or twelve trips back and forth to the dumpster with loads of trash in the dust bin………the attitude changed.
“This sucks…..my hands hurt.”
“Oh really…….I thought you enjoyed it?......and you missed some over there in the corner.”
“Well….I don’t like this……I won’t do that again.”
“I would certainly hope not………wait…back behind you…..you missed some more…those grungy, wet, dirty pieces of paper.”
“Oooh….this is gross.”
“Yeah……it sure looks gross to me……don’t forget those other bottles laying off to the side either.”
“OK……OK…..I get it…………there……I am done.”
“Not quite……there is a bunch of trash lying around the dumpster that you need to pick up.”
“OK……NOW I am finished!”
“Good job….now wasn’t that fun?........Oh wait……look here…..another broken bottle…..I want every single piece of glass picked up.”
(Mumble….mumble……grunt…..grunt………..mumble.)
“Did you say something?”
“No…………”
“You know…..cars drive back here around the building……I doubt that any of the folks bringing their cars back here would be happy about finding glass in their tires.”
“I don’t see any cars back here.”
(And as if God was watching all of this……….a white work van was sent down from the heavens and pulled around the back of the building…….I could almost hear the angels singing and the harps playing as he slowly approached and watched Zachary working to clean up the rest of the glass.)
The driver rolled down his window and stopped to watch Zachary sweeping up the glass.
He looked sternly at Zachary and said……”It looks like someone is learning a lesson.”
I responded, “Yep….I was just telling him that people driving back here would NOT like to get glass in their tires.”
His response was, “Good for you….making him clean it all up.”
I also informed young Zachary that littering was a crime…and that you could get a fine or worse…..depending on how severe the infraction was. He didn’t believe me……so once again……God smiled upon us and sent an off-duty police officer into the bowling alley to pick up some bowling supplies……..he got to meet Zachary……and I had Zachary ask him about littering. He informed our young genius that he has arrested people for littering before……….he said that there are fines that could cost hundreds of dollars for littering…..and that as his age….they wouldn’t send him to jail….but that juvenile detention was worse than jail.
I don’t know how much of this sank into his teenage head……..but at this point, I’m hoping that every little bit helps.
The only thing that Zachary hasn’t lost is physical exercise…….he is still working out and playing in the recreational soccer league. This weekend is the tournament for that league. Yesterday his team had two games and today they have one. The best two teams from the tournament will move onto the finals next weekend. In their first game, Zachary played really, really well. He almost scored one goal, hitting the post on an amazing sliding shot……and he passed some amazing shots to his teammates that could have turned into goals. His team won 8 – 0. In the second game, they lost a hard fought battle 2 -1. Today’s game is at 2:30pm……if the weather holds up.
That is all of the news from Jensen Beach right now…………..and THOSE are the Days of our Lives!
Scott
Wednesday, January 24, 2007 4:27 PM CST
OK….OK…..let us ALL take a deep breath and pause for a moment.
I am NOT angry at anyone for offering their unsolicited advice!
I am grateful that all of you care enough to offer your opinion.
I am ALSO grateful to Khalita for looking out for us and for posting her entry.
Since that last journal entry….things have gotten worse.
Yes…..you read that correctly………things have NOT gotten better….they have gotten worse.
Young Zachary served his three days of out of school suspension…..he did his time…..AND he got grounded at home…..losing all of the aforementioned electronic devises. He survived the weekend without his games/toys/music and promised to correct his behavior. The reward for being good……if he could stay out of trouble for two weeks, he would be eligible to start getting back some of his things that he had lost.
Well……..Monday he returned to school……and Tuesday he got in trouble….again.
This time it resulted in a three day in school suspension…………..
It appears our young genius was in class….and another child passed him a note asking where he had been last week. (When questioned later why he didn’t just ignore the note since note passing is not permitted, his response was, “I had to answer him, he passed me a note….WHAT….don’t you want me to have any friends?”)
So…..he got caught with the whole note thing…..and he was also throwing balled up paper around too…..so the teacher asked Zachary to bring up his planner so that he could write to us what Zachary had done. Zachary……in a fit of utter stupidity, said this….
“You come and get it…you need the exercise!”
The teacher was obviously upset by this comment and asked why Zachary would say that……….so….and in yet another fit of stupidity, young Zachary replied……
“Your wife told me last night!”
(At this point in the journal I feel that it is necessary for me to pause…….I am guessing that some of you are trying to pick yourselves up off of the floor…while others….suffering from some sort of sick demented psychotic mental instability…are laughing. Either way….I will give you all a moment to compose yourselves.)
I for one did NOT find this amusing……..and I assure you that I have taken NO liberties in conveying this story to you…..it happened just as I described it to you. How the teacher refrained from knocking Zachary out…..I will probably never know………what I DO know is this…..he got three more days of in school suspension. And the administrators made it very clear to Zachary that if he leaves sick, or for doctors appointments….he WILL make up the time!
Now….getting back to the debate in the guest book entries as to whether or not we are looking for or accepting advice from “strangers”.
Hmmmmmmmm…..how can I put this tactfully….without offending anyone……I know that there are many people from a variety of backgrounds that read these entries….so I don’t want to upset anyone…..let me see……OK….I’ve got it….this pretty much sums it up:
I WOULD URINATE ON A SPARK PLUG IF I THOUGHT IT WOULD FIX THIS!
If you have a magic wand……..by all means…….share the love!
If you have some of Jack’s magic beans….by all means….send me some….I’ll shove them up Zachary’s A$$ and let the bean stalk take him to the moon!
If you have a witch’s potion that will put a sensibility spell on him……I will gladly take up witchcraft to learn how to use it.
Don’t be shy………it is the fourth quarter….we are down by 6 points….we have 99 yards to go…….it is fourth down…….and there are 3 seconds left on the clock.
(For those of you that don’t watch football………life sucks for us now, and we need help before things get worse.)
Oh…..and other bit of information…before anyone suggests it……we are still seeing the same psychologist that we have been using since he got diagnosed…..he is also seeing a psychiatrist, and he is now seeing the school district mental health counselor…..so NO, we are not ignoring the professional opinion of the folks that work “that” side of the couch!
Scott
P.S. Pray early…..and often.
Wednesday, January 17, 2007 6:04 PM CST
I can remember the days when I looked forward to writing these journal entries…..I would actually enjoy sharing the whacky and weird stories of young Zachary’s adventures with everyone………….and then adolescence hit!
Rebecca and I are on a boat……..the boat is very small……..and it is in the middle of the ocean………..one of the BIG oceans……………we are NOT within sight of land….and there are no other boats around……we have no life vests, no food, no fresh water, and the boat is being sucked into a giant whirlpool……the depths of which are immeasurable. We have one paddle……and it is broken!
BUT…..we remain optimistic that we’ll survive and somehow get through this.
Last week’s drama was a phone call from the school telling us that Zachary was in the clinic with an ice pack on his eye from being punched during lunch. I drove to school to check on him and was informed that another boy had “cold-cocked” him during lunch. Several witnesses said that the boy was being picked on by another child….and that Zachary was just in the wrong place at the wrong time……..the “attacker” got three days of in-school suspension. He could have been expelled…but he had a perfect record….never having acted inappropriately before that.
This week’s drama is somewhat more disturbing. The school called today to inform us that Zachary has to serve a minimum 3-day out of school suspension. We have a meeting tomorrow with the school where we will learn whether or not he is being expelled! His suspension may end up being for 5 or 10 days….and, they may require that he attend an alternate school within the district where “trouble” children are sent.
What did he do you ask?
Well…..he made a very bad choice. I don’t want to go into too many details on here, but no one was hurt or threatened, but he brought something on a bus that he should NOT have brought.
Zachary is in the midst of an internal struggle to find an identity for himself. He no longer wants to be that “weak”, “sick” kid that everyone has been feeling sorry for over the past 7 years. He wants to be a “badass.” He wants to be “cool.” Unfortunately, his perception of what it takes to gain those monikers is not acceptable in our society, and certainly won’t be tolerated within a public school system.
So….here we are…….trying to enjoy the medical quality of life that we have been blessed with, and we find ourselves adrift, looking at the broken paddle, wondering how in the world we got this far off course, and how in the world we will ever find our way to safety.
Zachary’s punishment at home is severe….he has lost pretty much everything that he loves; TV, computer, Ipod, CD’s, radio, PSP, PS2, XBOX, Gameboy……if it uses electricity, he lost it……he is allowed to eat, shower, go to the bathroom, do homework, and read……..and that is it. We are not yet sure how long this punishment will last…..I am leaning on keeping it in place until he is old enough to run for President of the United States. We will see.
Scott
P.S. If you happen to be on your computer…..and you happen to open up Google Earth, …..and you happen to zoom in on one of the larger oceans…..and you happen to catch sight of a rather large whirlpool……and then you happen to see a very small boat with two distraught people in it being sucked into that whirlpool…..you may want to notify the authorities and have them send out a plane to drop us some water….or perhaps a non-broken paddle…………..if you happen to think of it.
Sunday, January 7, 2007 6:40 PM CST
Happy New Year everyone!
I hope it pans out to be a healthy and prosperous one for all of us!
Zachary has now been “portless” for a week and a half. His “wound” site is healing nicely. The only discouraging part of this ordeal is Zachary’s storytelling at school about how and why he got the stitches …..evidently young Zachary…..being the wanna-be “badass” that he is……has decided to tell his friends that …..(wait for it….you’re gonna love this one……here it comes….)
“I was shot at Wal-mart.”
We’re SO proud of our little gangster wanna-be.
He appears to be in a constant state of trying to find an identity that “fit’s” his idea of how he needs to be to fit in. The funny thing is that the other kids like him for who he is, he doesn’t need this rebel personality thing at all……but he can’t grasp that, so, he makes up stories to appear like a rebel.
The good news is……other than a few nausea bumps in the road, he has been feeling pretty good…..and his grades have been holding up as well.
Zachary will be seen by the surgeon on Wednesday, so if he checks out OK, he will be cleared to start playing soccer again.
Scott
Thursday, December 28, 2006 4:34 PM CST
THE PORT IS GONE!!
(Sorry for the brief update…..I promise to ramble on in my next one.)
The surgery went well yesterday………the doctor informed us that he did some plastic surgery along with the port removal in an attempt to eliminate any scar. The bandage doesn’t come off for a couple of days….so time will tell.
Zachary had some pain last night……but today he only needed a little bit of Tylenol, so hopefully he’ll back to top form within a week or so………..(no exercising for two weeks, doctor’s orders.)
Scott
Friday, December 22, 2006 3:57 PM CST
OK….the journal entries are coming fast and furiously….so if you haven’t been checking up on us every couple of days, then you will not be able to follow along with the story line…..so go back and read them in order.
The appointment with the cardiologist went well…….their office could NOT find the mysterious murmur. SO………the surgery is all set for Wednesday at 12:00pm. We are all excited at the prospect of losing the port….and giving Zachary some more freedom.
As for the on-again, off-again murmur, I have no idea…..actually that is not completely true………I am working on a theory whereby teenagers carry within their souls residual “murmurs” or comments that they continually make under their breath at their parents. So…….if a child…..like Zachary…..were to make such comments……which he does, and if such comments were to be bouncing around inside his teenager head/body….which they probably are….then I believe it is entirely possible that the residual or echoes of those comments could be misconstrued as a heart murmur. (OK……it may not be the strongest theory that I’ve ever floated out there in one of my journal entries….but I’m sticking to it!
Scott
P.S. Happy Holidays to everyone……if you are traveling….travel safe…..if you are partying…..party safe…….if you are overeating……….overeat in moderation…(was that an oxymoron?)………….and if you are spending time with relatives…..then God bless you!
P.S.S. I was only kidding about the “relative” comment……I was looking for the easy laugh…….I am, in no way, suggesting that spending the holidays with family is in anyway a stressful endeavor. (HA).
Tuesday, December 19, 2006 4:41 PM CST
Well…we’re back from Atlanta. We had a great time visiting with family.
Before I tell a story from that trip…….I would like to give some medical news:
In my last journal entry I wrote about the possibility of removing Zachary’s port. Several of you commented that we should get Zachary’s opinion on this…since it is his body. Well….even though I neglected to write that in the journal entry….we of COURSE consulted young Zachary and got his opinion…..he is VERY excited at the prospect of having the port removed!
Now……….first things first…….we needed to meet with the pediatric surgeon before they would set a date for the port removal. That was last Wednesday. Rebecca and Zachary went to the appointment and guess what happened?????......NO guesses?
The nurse there heard a heart murmur while examining Zachary. SO, he now needs an ultrasound of his heart before the surgeon will clear him for port removal surgery. SO, THIS Wednesday….Zachary and Rebecca go back to that office building to have a cardiologist do an ultrasound of his heart.
So…..where did this mysterious murmur come from?
How bad is it?
Will it get worse?
Should we be concerned?
(You can go ahead and start answering these questions anytime now….we’re waiting.)
OK….truth be told….I have no answers……yet.
I suspect (based on all of my years in the medical profession) that IF there is a murmur it will prove to be a mild one (I don’t know if the word ‘mild’ is ever used with murmurs, but I’m using it…..so get over it)………..I also believe that any damage that his heart may have is a direct result of the long-term chemo usage. (Once again….not much we can do about that now…….it’s not like we’ve had loads of alternatives over the past several years.) It’s ALSO NOT like there are tons of kids out there that have gone long term on this chemo….Zachary is one of the longer ones……so if your child (God forbid) requires this chemo years from now….you may see a warning label that reads: “Long term usage may cause heart murmurs.”
He does NOT seem to be limited physically by any of this. He is still playing soccer and running (when his knee isn’t hurting him…..he ran into a metal pole while running at school last week,)…..so I guess we wait for the results of the test and go from there.
(I started writing this journal entry last night……this morning the surgeon’s office called and said they had scheduled the surgery for next Wednesday…even though we haven’t done the ultrasound yet….so assuming the results are OK….next Wednesday is “Port Removal Day.”)
Now…back to Atlanta.
On Friday we were driving back to our hotel from the Georgia Aquarium…..and the road we were on had a toll stop….requiring a $0.50 fee. We were out of change, so my father handed me a dollar bill………when I got up to the cashier……she politely informed me that the car that had preceded us had paid for our toll and passed along the message, “Happy Holidays.”
WOW!
DOUBLE WOW!
My first thought….(after the whole WOW thing) was….if this had been in Florida…I would have gotten to the toll, only to have the cashier inform me that the driver that preceded me said, “The guy behind me is paying for my toll.”
That is the difference between Florida….and areas north of here. Our area has become way too overcrowded…….and most of the people are looking out for #1. They cut you off on the road….they go through red lights and stop signs…..if you turn your signal on to change lanes…they speed up to prevent you from getting in front of them. In Atlanta…(and surrounding areas)…….when you get to a four way stop sign….you better have a sandwich and something to drink….because you are going to be there for awhile….everyone waves the other person on…..back and forth…….everyone is trying to let the other person go first. Amazing how different it is from down here.
After relaying the story of the toll to our other family members…..my sister-in-law told us about a friend of hers that works part-time at a Starbucks. She was working the drive-thru one busy morning with a long line of cars waiting for their morning coffee/latte. A driver pulled up and said, “I would like to pay for my drink and the drink for the driver behind me….tell them to have a nice day.” That little act of kindness lasted for the next consecutive 40 cars!!!
Once again…that would never have happened down here. It is sad….but true.
All of this reminds of the movie, “Pay it Forward.”
When we left Atlanta on Sunday morning….we paid the toll for the car behind us on the way out of town……maybe that person too will pass along a nice gesture to some other stranger.
Scott
Saturday, December 9, 2006 8:30 PM CST
Ooooooooh……two updates within one week…….what are folks going to think?
Well…..the school issues have gotten worse….and better……….welcome to our roller-coaster. Zachary got over his bus suspension….only to get a two day in-school suspension for trying to hurt another boy. The details are somewhat sketchy, but he really had no explanation for his actions. He DID admit that he hated the suspension part, so hopefully that will prevent him from acting out anymore. (He has a lot of anger built up in him from years of feeling “weaker” and “inferior” to the other children.) Now he needs to learn to control that anger and avoid taking it out on people that had nothing to do with the teasing or picking on him that took place.
The good news at school is that he now has all ‘C’s and one ‘B’. No more ‘F’s or ‘D’s! He has worked to make up the assignments that he has missed, and he got a 100 on his big report that he was working on over the past two weeks.
Now onto medical news:
As all of you know…..or should know……Zachary still has his port. The medical relevance to that fact is this……….because the port is a foreign object in his body; it is a constant risk of infection. This is why any fever over 100.5 can require a hospital stay. The risk of infection can require IV antibiotics. This last fever of Zachary’s was managed with oral antibiotics, so we were lucky. The other downside to the port is that it needs to be flushed about once each month. This is almost always a battle for us. Zachary has developed many “rules” and “quirks” that can make “access day” anything but a smooth experience. Lately, his port has not been easy to access. Clots can form in ports, and we’ve recently learned that as children grow, the line can get kinks or twists in them that can cause a port to function poorly. There is a special drug that can be used to try and break up the clots so the port can work properly, but that does not always work.
So…..here is the BIG news! At Zachary’s most recent office visit, (after another poor performance by the port), the doctor suggested two options, replace the port, or just remove it since he is not using it for chemo.
Hmmmmmm……….he is not using it for chemo.
HE IS NOT USING IT FOR CHEMO!!!!!
Why the $%#* didn’t we think of this?
He gets his weekly blood draws from a normal IV in the arm……the only time they use the port is when they need to flush it. So WHY KEEP IT? It is the ONLY reason that a fever over 100.5 is a problem………..without it, he will be less at risk when playing sports, (he is very active), he will not have to deal with having it accessed monthly, and he will not freak out every time his temperature creeps up towards that magic 100.5 number.
So what is the downside to all of this?
Well….if the current port is not working properly….it needs to come out. We have spoken to several of Zachary’s doctors…and they agree on this. The next issue is whether or not to replace the old one with a new one…….now. Well……..if he is in need of IV chemo for extended periods of time…..a port makes sense. But, we are currently on a 6 month check-up schedule with Ft. Myers……they are pretty confident in their scans………and they feel he is at least stable at this time. (No improvement, no worsening.) So, if we wait on replacing the port………the downside is that IF his disease starts to progress and IF at that time we choose a treatment plan that requires a lot of IV treatments, then at that time, he will have to undergo a second anesthesia to implant a new port. SO………the fact that we can buy some time without a port again, (he had three months of no port at the end of 2001 before relapsing in the beginning of 2002), we believe far outweighs the risk and inconvenience of a second surgery that may not ever need to take place.
Now, since I have always tried my best to share news and ask for opinions on this page, I will NOT be offended if any of you out there in clueless land decide to weigh in on this issue. Feel free to agree with me…..or if you so dare…..to offer your worthless, meaningless, opposing view on this issue. I promise NOT to be judgmental. (HA).
The thought of giving Zachary back some more freedom over his body is very appealing to us. In three months, he will turn 13 years old….and he will have been battling this disease for 7 years.
Scary!
Very scary!
Scott
Saturday, December 2, 2006 8:04 PM CST
Gee, it’s only been two weeks since my last update……..and not too many complaints in the guest book entries???....hmmmmmm……I guess everyone just figures that I’ve either gotten lazy…..or there is nothing to write about.
Well let me tell you this……there is ALWAYS something to write about. The problem is this though……..when it comes to cancer, the disease, the hospital, the insurance companies…………the enemy was always a clear cut person or entity. It was never too difficult to hone in on their weaknesses and attack mercilessly. Times have changed though, things have changed…..the enemy has changed………it has become a 12 ½ year old monster, disguising himself as our little angel.
Oh sure……look down on me for calling my son a ‘monster.’……like none of you have ever had a child go through the “terrible two’s”, or the wonderfully bizarre teen years. I know who you are…………..don’t play coy with me.
My mind is a fog. Memories from the past month or so have blended together….I don’t really know which way is up and which way is down……I can’t even remember if I’ve written about some of young Zachary’s finer moments over the past several weeks/months. One of the more recent…..and memorable Zachary moments came this week. We got a call from school informing us that our son and another child were threatening to fight each other……….and they had gathered up 3 or 4 friends each so they could make it an all out war…….you know……just to keep things interesting. When asked why this was happening, Zachary claimed that he and this other boy had arm wrestled and that Zachary had won………and later….when Zachary refused to give the kid a rematch………the threat of a fight had been made…..and things had escalated from there. Fast forward to the next day…..when the school called, to inform us that the other child’s parent had gone to school because their son was afraid Zachary was going to “beat them up.” That child’s story was different from Zachary’s. He claims that he saw one boy pinch another boy and made the comment, “don’t do that, you can give the kid cancer by pinching him.”…..and that Zachary had overheard it and gotten mad and threatened to beat him up. When confronted with the other boy’s story, Zachary admitted that he had heard that comment and that it HAD made him angry, but that the arm wrestling thing had also happened too. The end result was that Zachary got suspended from the school bus for next Monday, for making the threats. So…..yesterday I get home from work….and I’m attaching some lights to our decorations….and a boy I don’t know walks up and asks if Zachary lives here. I tell him yes…..and instruct him to knock on the door……….he goes in and apologizes for getting Zachary suspended……(he is the other child from the story)……….and 3 minutes later they are skateboarding and playing together??????????????????
I quit.
I want a refund.
I want a do-over.
I want to apply for a brain transplant………for either him or me…..just so one of us is different from here on out.
I just don’t get it.
I just don’t get it.
I tried explaining to young Zachary that when you react to comments the way he did, you are empowering the other person. You are relinquishing your control and handing the other person control over your feelings and emotions. (Evidently this advice enters the 12 year old ear, travels towards the brain, where it is cleverly intercepted by an adolescent translator, where it is converted into the following: “I AM A CLUELESS ADULT THAT CAN’T POSSIBLY UNDERSTAND ANYTHING THAT IS HAPPENING TO A CHILD OF YOUR AGE GROUP SINCE I WAS DROPPED ONTO THIS PLANET BY ALIENS AS AN ADULT AND HAVE NEVER EXPERIENCED CHILDHOOD.”
Yeah…..that’s pretty much how THAT works.
I have been trying to remember my youth……and whether or not I argued over EVERY LITTLE THING like Zachary enjoys doing. I didn’t think you argue over some of the things that he disagrees with us on. Like……simple things……like……….sitting while eating dinner…..and NOT standing up so we can stare at ourselves and make muscles in the mirror across from the table…….or…….eating habits……..NO….I refuse to elaborate…..some of you may be eating while reading this….and I don’t want to be responsible for any sudden fits of vomiting or gagging that might take place. Although, as long as we’re talking about vomiting………(you are being warned now……read on at your own risk…..this next section is graphic in description.)
(OK….just in case you were skim-reading…..I said, THIS NEXT SECTION WILL CONTAIN GROSS, GRAPHIC DETAILS ABOUT VOMIT!! Stop reading now and save yourself the aggravation.
Zachary has been sick from a sinus infection for about 2 weeks now. It messed up his chemo schedule….he was too sick to take the meds……..so this week we were supposed to start him back up again…..and it has been rough on him. Well, the other night…after taking his chemo, he sprinted to the bathroom to vomit it back out again….because, well, chemo makes you puke…..so…..there you go…….he puked. BUT……….Zachary has an interesting habit when it comes to vomit………….he knows he is going to get sick, he feels it coming………he gets to the bathroom in plenty of time…………there is NO going back…..no talking him down off that ledge……….but he REFUSES to kneel down, because….and I quote….”It makes me nauseous.” WHAT? WHAT? WHAT?
You are in the bathroom to puke……..you know you are going to puke…..WE know you are going to puke……..YOU know that we know that you are going to puke. WE know that you know that we know that you are going to puke………everyone within a hundred mile radius knows that you are going to puke…………so “adding” to your nausea is not really a possibility………….so for the love of everything holy in this world…..PLEASE kneel down like every other red-blooded American and puke INTO THE BLESSED TOILET. No……of course not…..that would make him nauseous……..he would much rather stand….STAND!!!!!....and projectile vomit from a distance. I believe he MAY have a new distance record under his belt……..and over the toilet….and under the back of the toilet…..and on the bathtub….and the edge of the sink……..and up under the edges of the weird places on a toilet where you don’t like to clean ever, ever, ever, yeah, he can blow chunks pretty much all over those places………….from a distance.
I finally drew the line in the sand and explained that they call it “Praying to the Porcelain God” for a reason….because you need to actually KNEEL DOWN to pray!!!
I know I’m heartless for picking on him after he has vomited up enough puke to fill a swimming pool, (and not a kid’s pool either.….but one those big Olympic ones)….but come on…something has GOT to give……
So there you have it…..or at least some of it. And let me assure you that NO amount of rubber gloves or NOT breathing through your nose can adequately protect you from the onslaught of odors and chunks that accompany the cleaning up after the event.
Scott
Thursday, November 16, 2006 7:13 PM CST
Just another boring no-news week here in South Florida………….or is it?
Where to begin…..where to begin?
Well….let us start with a week or so ago……….I reported the results of our Ft. Myers testing trip………so that is of course old news. One of the issues (which I mentioned in my last journal update) was the planter’s wart on Zachary’s foot. As I mentioned, the doctor suggested having it frozen off. We received some interesting guest book entries with alternative ideas on how to get rid of the wart. One such idea that we took a liking to was using a piece of duct tape….and covering the wart for several days. We were out running errands and stopped by our local Walgreen’s to get some. Rebecca had Zachary convinced that we were buying the tape to cover his mouth…..he actually got nervous when we were walking up to the register to pay for it……
So we tried the tape…..and we will see…….meanwhile back at the ranch, Zachary had his first recreational soccer game on Sunday. His team lost, but Zachary played well. That is….he played well until he had to leave the field with about 5 minutes left in the game……..and why did he have to leave the field….well he got injured. And HOW exactly did young Zachary get injured you ask?.....well….he headed a ball…..at the same time a shorter teammate tried to head the ball…..the teammate headed Zachary’s mouth. I was watching the play…and I thought he got hit in the nose…..but he didn’t……one of his permanent lower teeth got broken exactly in half. Amazingly, he spit the broken half into his hand and continued playing until a whistle was blown…then he left the field and told his coach. His coach walked him over to us and showed us the damage. On Monday, Rebecca was able to get an emergency dental appointment….and the dentist glued the tooth back together. The bad news is that they feel it will probably need root canal eventually.
So….fast forward a couple of days. Wednesday, (yesterday), Zachary started to feel a bit……..”off.” He had to miss soccer practice because he wasn’t feeling well. Now, keep in mind, this is supposed to be our big sports weekend. We were given free tickets to attend the Tampa Bay Lightning hockey game Friday night, and we were given free tickets to attend the Florida Gators football game Saturday at noon, AND we were given free tickets to attend the Florida Gators basketball game Saturday evening! Now, to all of you non-sports folks this may all seem a bit mundane, but let’s put this into perspective. The Lightning are our favorite team in the whole wide world. We love the team, we love the players….we love them all….they treat us like royalty and we always have a good time over there. Now…onto to football……Zachary and Rebecca have never been to a college football or basketball game…..both of which can be exciting….if they were “normal” games. However…..the football team there is now in contention for the national title because of Louisville’s loss to Rutgers a week ago. And the basketball team is ranked #1 in the country! So we were REALLY looking forward to this weekend.
So…..last night Zachary got a fever. Now….normally a fever means an instant trip to the hospital. But because Zachary’s counts have been good over the past year, his doctors have allowed us to treat him at home with oral antibiotics as long as the fever doesn’t persist for more than a couple of days. Today…he awoke with a fever, and a cough, and a sore throat. We tried to let him “sleep” off the illness during the day…but it got worse. I called his doctor, and they called our local pediatrician, and I took him in to get examined. They were able to rule out lung problems….his were thankfully clean. But the doctor did diagnose him with a sinus infection. She prescribed antibiotics and cough medicine. But she also insisted that we don’t leave town….too risky if the fever persists. So we had to cancel our weekend. Zachary took it pretty well……he was feeling pretty crappy all day and even said he didn’t want to try and go…..(that was before the doctor told us we couldn’t).
I reminded him how lucky we’ve been…….in over six years of fighting this illness and going to a variety of events….we have never had to cancel due to his illness. Family reunions, hockey games, Boggy Creek, and the list goes on. There will be more hockey games…..and basketball games……the football season is about over….but there is always next year………..life goes on.
Scott
Friday, November 10, 2006 9:10 PM CST
We’eeeeeeeeeeere Baaaaaaaaaaack!
OK…….before I go into some long boring medical explanation of our Ft. Myers trip, I want to make it perfectly clear that I don’t have the “full” report back yet from the doctor.
HOWEVER…..the initial report is as follows:
“IMPRESSION: Persistent activity in the mid spine similar to the previous study.”
That is it!
Nada more!
The doctor has promised to email us with his thoughts, but pretty much we are looking at stability! (Stability is a good thing……improvement would have been a GREAT thing, but stability is a good thing.)
During our visit, the doctor explained that because of the success of children like Zachary on these two chemo agents, they have become the standard for recurrent Neuroblastoma patients across our great land. Apparently doctors are also having success with these agents against Wilm’s tumors too. The other encouraging news is that unlike many other chemo agents that can have a high risk of causing secondary non-curable cancers, they are not seeing that with these two drugs. As for the future……..the plan with researchers is to keep kids like Zachary on these two meds as long as possible….AND, they plan on starting new studies that will add a third agent to the protocol. The theory being that these two current ones are good at maintaining stability……maybe a third agent can deliver some improvement. I don’t know the timing on those new studies, but I imagine the more critical cases will be offered (and seeking) those studies as they become available.
It is still mind boggling to think back over the past four years at all of the other treatment options that we turned down. Treatment options that friends of ours tried…and sadly found little success with. Why did the dice roll the right way for us? Why didn’t we try one of the many protocols that NYC offered us? How did we get lucky enough to find a treatment plan that would afford us such excellent quality of life?
While I try not to allow these thoughts to consume my waking hours……I will never be able to escape them. There have been too many brave souls that have traveled down this road before us…..so that we may enjoy this quality of life.
WE ARE LUCKY!
So…..there you have it. The exam with the doctor went well. He was very impressed with Zachary’s 5’2” 99lb. physique. Zachary does have a planter’s wart on his one foot. The doctor recommended having it frozen off after soccer season. (It will probably take a week or so to heal.) We talked about Zachary’s mental state of mind……and some of the issues that we have been facing lately………and he gave us some recommendations on how Zachary could be treated medically for that. He also assured us that many of the oncology kids his age require a medicine to help them cope with all of the stress that they are dealing with. So, we will explore that this week with a local doctor.
Zachary started back up with recreational soccer tonight….he practiced with his new team. His first game is Sunday. Several of his friends are on the team, so I think it will be a good thing for him.
Other than all of that……..I guess life has returned to normal for us. (As normal as normal gets.)
Thank you all for keeping us in your thoughts and prayers……testing time is always a trying time. Hopefully we will have an uneventful six months before we return for more testing.
Scott
Sunday, November 5, 2006 7:24 PM CST
YEAH!!!!!!! TESTING WEEK IS HERE!
OK….maybe that enthusiasm was somewhat faked. Testing weeks suck….but then of course it could be a good thing……..it’s not so much about the testing…as it is about the results!
Speaking of results……..as always…we are hoping for news by Friday….but not expecting any until Monday or Tuesday. I promise to update as soon as we hear.
I’m sure there are a hundred other things that I could be writing about…..but once again, my brain is on hiatus.
Zachary is still struggling with school. We are working on a plan….or two….to help bring about some sanity to that issue.
Scott
Thursday, October 26, 2006 5:20 PM CDT
WHAT?????
I can’t vent a little bit without everyone FREAKING OUT???
CANCER SUCKS!
PUBERTY SUCKS!
PRE-TEENAGERS ARE ABNORMAL!
SCHOOL (Seventh grade in particular) SUCKS!
Now….put ALL of those wonderful things together………mix it up really well. And presto……..you have Zachary!
I’m sure that the bottom three things on that list are hard enough without the first one thrown in for good measure.
SO…..I CHOOSE TO BLAME THE CANCER……..SUE ME!
Scott
P.S. Thanks for checking in and caring.
P.S.S. I’m sorry I yelled at all of you….I know you are just trying to help.
P.S.S.S. I’ll try to work on my outbursts………I’ll try not to YELL anymore.
P.S.S.S.S. I promise.
Wednesday, October 25, 2006 7:13 PM CDT
Lest anyone forgot….
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Scott
Wednesday, October 18, 2006 6:00 PM CDT
I don’t know. I truly don’t know. I mean….sure…..there is stuff going on in our lives….it’s not like we fell off of the face of the world or anything……it’s just…I don’t know…..it’s just……..well……..maybe I’m not remembering details of our days the way I used to…..I AM getting older…..I guess we all are…….but I used to write the entire journal entry in my head while I was driving around doing sales calls….and then…I would get home….and just sit down and type in everything that was in my head…..but now….lately…..there isn’t anything left in my head when I get home……should I be concerned about this?
Zachary has now completed round…….I don’t ……..3,498,112,996 of chemo…..or maybe it was just round 28……..let’s see….at three weeks per round……..3 times 28, carry the 2……divide by something…….do something else….add in for the extra time off we’ve taken…..account for leap year…..and the full moon………..and we have been doing this chemo for about 54,432,000 seconds, or 907,200 minutes, or 15120 hours, or 630 days, or 90 weeks……you pick your poison…..(No pun intended.)
Zachary is sick of it…….we’re sick of it……..we’re sick of him being sick of it….he is sick of us being sick of him being sick of it…….we’re sick of him being sick of us being sick of him being sick of it……you get the idea.
We have scheduled our twice annual Ft. Myers trip for MIBG testing. We will be going over in early November for two days. The doctor has already made the appointment for us, so hopefully that will all go well. (Is there any correlation between pending tests and my new found craziness……I don’t know….you do the math.)
Zachary’s soccer season is about over….his team ended up with a 5-2-2 record. They start the playoffs on Monday against a team that his team tied earlier in the season. It is a single elimination tourney, so if they lose they are done…if they win, they travel to Sebastian to play the undefeated team that beat them 6-1 a week ago. Zachary did get to play in a few games…….and even kicked the ball a few times……so that was exciting.
Yesterday we did an interview with one of the local TV stations that is putting together footage for an upcoming telethon for our local hospitality house in West Palm Beach. We stayed there many many times after Zachary relapsed, so it is nice to be able to give something back by sharing our story. I think it will air sometime in early December. I will keep everyone posted that has an interest in seeing the piece.
Zachary is still struggling with some of his classes….he has managed to bring up one of his bad grades….and he is working on the other one……..suffice it to say…….until that happens, he is on bread and water rations only……with two 10 minute exercise periods from his solitary confinement each day.
I am somewhat sorry for taking so long between updates……..as I said……my brain is turning to mush……..consider it a blessing that I was able to put this many sentences together without a spelling or grammar errer.
Scott
P.S. Anyone that writes, calls, emails, telegrams, or uses telepathy to inform me that I misspelled “errer” at the end….truly has NO sense of humor and is hereby suspended from reading my entries for 1 week……the good news is that there is less than a 1% chance of anything new being written here during that time…..so you really won’t miss much.
Tuesday, October 3, 2006 7:36 PM CDT
You people and your ##$^&&%# updates!!!
OK….you win……….read the following….and consider yourselves updated.
Rebecca turned 30 this past weekend. We had a small party with family and some friends…..I was able to get her brother and sister-in-law to drive down from GA and surprise her for the weekend. The party was Friday night….and then Saturday I had bought tickets for a comedy show at the Improv in Hollywood……so we took Rebecca’s brother and his wife and enjoyed a nice evening at the Hard Rock Casino..dinner and a show.
Zachary’s counts remain strong……and his treatments remain constant……it’s his attitude that is going to be his downfall.
He is now officially in FULL TEENAGER MODE!!!
After many months of research, study, reading, and learning, I have FINALLY found the solution to our most pressing problem…..how to know when young Zachary is lying to us. The answer is………WHEN HIS LIPS ARE MOVING!!!
You may think that I am exaggerating, but let me assure you…..Zachary has taken lying to a WHOLE new level. Let us start with his cleanliness. He doesn’t like taking showers, so of course, he gives Rebecca a hard time when she tells him to take one. Eventually he will relent and seclude himself in his bathroom. Well…the other night….when he was SUPPOSED to be showering, Rebecca was walking by his bathroom and noticed that the water noises were not varying…..like when someone is actually IN the shower…..so…..she slowly opened the door….and found……..
……Zachary sitting on the floor playing a video game while the water was running away in his shower….WITHOUT HIM IN IT!!!
What the heck is THAT all about?
Where the heck does THAT come from?
But….the main problems that we are having revolve around school. He is definitely having many, many problems with 7th grade. The adjustment from the private school where he had NO responsibility and NO academic requirements to speak of to the public middle school where he is expected to turn in work without being asked…..has been VERY trying.
The “switch” in his head has not flipped yet…………he is not adjusting well. We are seeking help from a variety of sources……..and I just hope that we can salvage the school year and keep him with his peers. Because, if we can’t…..then I don’t see him being able to return to “regular” school in the future.
He IS passing most of his classes….but he is also having problems in several others.
In the big scheme of things….these are problems that many of you would LOVE to have. (In place of other nightmare realities that you are living or have endured in the past.)
But….BUT.....after 6 ½ years of fighting cancer…..I guess we were just hoping to have somewhat of a normal existence for him….and for us. Oh well……..the best laid plans of mice and men.
Scott
P.S. Oh yeah……thanks for all of the visitors…we hit the 400,000 mark!
Tuesday, September 19, 2006 7:26 PM CDT
Thank you to everyone that passed along their condolences to me for the passing of my grandmother.
****NEW PHOTO IN ALBUM****
Boggy Creek was great…..as it always is. But before I get into the story of that weekend, I wanted to relay what happened a little over a week ago.
I had some special deliveries that I needed to make on a Sunday. I knew it would take about 5 hours or so, so I offered Zachary the opportunity to help me out and earn some money. He accepted, and we had a really nice day. We got to talk, and spend the day together driving and making some deliveries.
Zachary has this interesting obsession with asking what one would do if they were granted a wish….or three. He has asked Rebecca and me about this many, many times. I know that I have told him a least a dozen times that if I were granted a wish…I would take his cancer away.
Well……on that Sunday, while driving for many miles…..young Zachary again decided to play the wish game. We were on a long open stretch of road, coming down along the ocean….driving at about 55mph. On this particular occasion, Zachary asked what I would do if I were granted only one wish. I immediately responded that I would take away his cancer so that he would be cured. He looked at my suspiciously, and asked, “You would use your ONE wish to take away my cancer?” “Yes. I would. Not only that, but if God himself opened up the heavens right now and said to me, ‘I will cure your son of cancer, but you have to trade your life for his.’, I would agree and die for you.”
Now……you would think that this would have inspired him to say something philosophical, or tender, or in some way express gratitude….but no…..what did my young cynical boy say?.............”Gee…thanks dad. If God took your life right now in exchange for mine…..we’re driving at about 55mph……you’d crash the van and I’d die too!”
(From the mouths of babes……..)
Boggy Creek was great! We were supposed to go up there the last weekend of the month, but we are celebrating Rebecca’s 30h birthday that weekend, and we have plans that couldn’t be changed. Boggy Creek had a cancellation for this past weekend, and they were kind enough to allow us to attend with the families from the Jacksonville area. As always….we met some wonderful families….and got to forget about our problems for a few short days. We fished, shot archery, played basketball, cooked, played putt-putt golf, danced, sang….and had a wonderful time. Boggy Creek will never ever get ‘old’ to us. The family atmosphere…..the staff….the surroundings…..it just never ceases to amaze us how wonderful that place is.
Zachary had a good time……he met a few girls up there that he liked…..he even managed to ask one of them to the dance on Saturday night. AND…he actually danced with her….and her sister……..and a counselor or two…………but the really interesting thing happened AFTER the dance. You see……after the dance, the children under 14 are supposed to go back to their cabins with the family pals. (The pal is the volunteer that has given up their weekend to be with these children. They pretty much spend the entire weekend with the child, playing the games….singing….doing whatever activity the child wants to do.) So anyways……the under 14’s are supposed to go back to the cabins. The 14 and older children get to attend a special camp fire with their pals and enjoy some more music and dancing. And the parents get to relax in front of a fire while enjoying snacks and desserts and rocking chairs and music.
Well…young Zachary heard about the after dance activities…..and he knew that the girl he had danced with was 14……and that she was attending those activities….so he informed the staff that he was 13 ½ years old…and that he wanted to join them. They approached us and asked if it was alright. We told them that we had no problem with him attending…but that they needed to know that he was NOT 13 ½ years old…he is 12 ½ years old. That thought it was funny that he would lie about his age for a girl….and seeing that they’ve known him for over 6 years…they felt that he would be OK at the after dance. He ended up having fun……he got a little over tired and cranky at the very end….but all-in-all….it wasn’t a complete disaster.
So…fast forward to dinner at home tonight. Zachary….like any other sane red-blooded pre-teenager…hates eating his vegetables. Rebecca usually makes him eat a bite for however old he is. Tonight…it was green beans….and he was pulling his usual tricks, trying to avoid eating any. Rebecca made her usual comment, “You need to eat one for every year you are old.” But………dad wasn’t going to let the opportunity pass….I immediately chimed in, “Yeah…..13 ½ pieces….Mr. 13 ½ year old.” He got a sly smile on his face and counted out 13 ½ pieces….knowing that he had been beaten.
Zachary’s soccer team has won two games, and tied one. They are slowly starting to improve with their passing skills and they are starting to look pretty good. Zachary only got to play for a couple of minutes in the first game….but he is on the team…and that means a lot to him. His ankles have been sore…from all of the running, so we don’t know if he’ll be able to play in any other games…..but he’s trying….and that’s all we’ve ever asked of him.
Scott
Saturday, September 9, 2006 8:17 PM CDT
I realize that I haven’t updated the page since 8/28, but I have a REALLY good excuse. I was abducted by aliens. Really…..I was….I was drinking beer, while fishing in a pond…that is in the middle of a cow pasture….and I was abducted by aliens. They took me to their mother ship…..did unspeakable experiments on me…..and I just got released.
OK….so you’re NOT buying the whole alien thing….I can’t say that I blame you.
Zachary is still on the soccer team…….they had a whole lot of afternoon practices that were canceled due to afternoon lightning storms…..so the coach finally had them practice at 7am….two hours before classes start. Zachary got sore ankles and is noticing that he is having trouble keeping up with the other kids…..so he’s not sure how long he will be on the team. It is much different than recreational soccer where the coaches can go a lot easier on the kids………school teams need to push the kids much harder, to condition them for tougher games. We’ve emphasized to Zachary that we’re proud of him regardless of what happens……..but I can sense his frustration with not being able to physically keep up with the other kids. He also has been very uncooperative with the whole hearing aid thing. We’ve had his cell phone in “time-out” for about three weeks now, and it hasn’t seemed to sway his decision about wearing them. He is absolutely convinced that kids at the school will tease and torture him about his looks if he wears them. I am beginning to think that we need to find a different strategy to get him over this issue. I’m am currently working on a bribe offer….where if he wears them for an entire month…..endures whatever is thrown his way…….he gets the reward….(yet to be determined),….then……he will need to keep them in to KEEP the reward….whatever it turns out to be. He is mulling over what “reward” is worth the torture that he is convinced will ensue……hopefully we’ll have an answer this weekend. I’m running out of ideas here. I could take away everything that he loves ….TV…computer….. etc, …..then I’ll only be making him miserable….and not accomplishing anything.
I just got back from an unplanned trip to Pittsburgh. My 101 year old grandmother passed away on Wednesday. She had been in an Alzheimer’s ward for several years….and finally succumbed to the end stages of that disease where patients no longer remember how to swallow food. She was an amazing woman. Here is the obituary from Thursday’s paper:
WINKLER
SHIRLEY SANDFELDER
On Wednesday, September 6, 2006 age 101 a resident of the Willows of Presbyterian Seniorcare of Oakmont; wife of the late Louis Sandfelder and the late Murray Winkler; beloved mother of Eileen (Dr. Stephen C.) Finestone of Vero Beach, FL, formerly of Forest Hills and the late Martin (Paula of Atlanta, GA) Sandfelder; cherished grandmother of Mark (Cindy) Finestone, Scott (Rebecca) Finestone, Ross (Angela) Finestone, Michele Sandfelder Mogilski, David (Bonnie) Sandfelder and Robert (Isabelle) Sandfelder; also survived by eleven great-grandchildren, nephews and a devoted niece Shirley Hackel. Having been born in Russia in 1905, Mrs. Winkler immigrated to Boston, MA at age five. While in her early twenties she moved to New York City, NY where she had lived and worked in the garment industry for more than 30 years. Mrs. Winkler was a working woman who overcame a limited education to achieve respect and success in her field with style and tenacity. Her greatest gift was the ability to turn strangers into friends.
The obit doesn’t mention that she was an amazing cook……..one without equal…I would say. She never arrived to visit us without bringing her famous liver rolls, or an assortment of her delicious pastries.
So…..I flew up to Pittsburgh on Thursday……..with a WHOLE lot of football fans flying in for the season opener….which I had forgotten about. The services and funeral were on Friday morning…and I flew back today. Zachary had an early practice Thursday morning, so he and Rebecca stayed home. I did get to visit with my two brothers and their families….and two of my cousins and my aunt were able to make it as well. While I was glad to get to visit with family……..the occasion was not one that I would have chosen.
So….I am back…..and there is work to be done………and next week we are supposed to be going to Boggy Creek for a cancer family weekend…..so I will keep you all posted this week if anything happens on the soccer/hearing aid/school/attitude front.
Scott
Monday, August 28, 2006 5:11 PM CDT
Sorry about the delay in getting an update going….I was busy last week with a sales show with work that had me going from early in the morning until late…late at night….all week.
First of all I would like to thank everyone that emailed us and asked for information on how to help Zachary by buying something from his school fundraiser. He did very well with the sale and will get everything that he wanted from the prizes! I don’t know what the final tally is or where he finished in the overall running, but I will update with that information when it becomes available to me.
Now….onto the really BIG news. Believe it or not…..somehow…….young Zachary has made the school soccer team!!!!!
(I just went back and looked….I guess I never wrote about him trying out. There were like 60 or 70 kids trying out for about 15 or 20 spots. That’s 6th, 7th and 8th graders competing together for those spots.)
I was able to watch Zachary at the initial tryout….and he had some issues……he didn’t wear his hearing aids, so he wasn’t able to hear all of the coach’s instructions……and he wasn’t hustling as much as he should have. I had a long talk with him, explaining that we were very proud that he was trying out….and as always….we only asked that he tried his best…….but I did offer up my suggestions to help improve his odds of getting on the team. I told him that the hearing aids were a big deal. The coach was looking for kids that had soccer skills….and that could LISTEN to his instruction. It must have sunk in…..because he wore them for the call-back tryout and impressed the coach with his heart and desire to play. (The kids all had to write some short answers as to why they wanted to play on the team and why the coach should choose them.)
So……practice will start soon….and hopefully he will have the stamina to practice hard and compete with his friends…….this particular school evidently is usually ranked very high in soccer………so it will be interesting.
Medically….he is in the week #2 of his usual chemo thing. Next week is an off week.
Unless you live under a rock, you may have noticed that we have a new storm heading our way…..again. Tropical Storm Ernesto is leaving Cuba as I write this and is expected to head our way over the next day or so. There is still much debate as to how much this storm will strengthen as it passes over the warm Caribbean waters….but most of the experts agree that we will get close to hurricane force winds with lots of rain….if nothing else. Once again the Home Depot National Weather Center worked its magic this week with this storm system. Several days ago, they had this storm hitting Texas, near the Mexican border…….then some genius at the HDNWC noticed that tomorrow is the anniversary of the Katrina hurricane and suggested that they move the target to New Orleans and Mississippi so that the media could feed off of that story and build it up. That hype lasted about a day and a half…until an even brighter genius at the HDNWC pointed out that the New Orleans/Mississippi areas have about 7 people left living there and that no one was going to make any money….even if all 7 of them went out and bought hurricane supplies…….it was at THAT point that they very cleverly moved the target squarely onto Florida. Their strategy was brilliant….first they started with a target on the Tampa area….with the storm moving across the state through Orlando and exiting at Jacksonville…..(all large metropolitan areas with lots of Home Depots stores to spend money at.) Then….they slowly moved the storm track further and further east….virtually covering the entire state…ensuring that each and every Home Depot would get it’s share of the panicked public spending their last dimes on supplies that will probably collect dust in some closet. (Pure genius………amazing.)
So there you have it…………..by tomorrow morning, they will have a much better (rolling eyes vigorously) idea as to where exactly this storm is heading…..and they promise that WHEN it makes landfall….they will be able to tell us WHERE it is making landfall. (We sleep very well at night knowing that the HDNWC is working to protect and inform us.) NOT
Scott
Friday, August 18, 2006 7:47 AM CDT
After a week of walking on eggshells with Zachary, I have decided to give you all an update. He is definitely in FULL teenager mode right now….arguing about the big things in life that matter……like……whether or not the sky is REALLY blue, and how hard of door closing constitutes a SLAM!
The underlying theme in all of this is that he has some serious issues with his appearance (which we think is fine). His hearing aids seem to be his biggest problem. He does whatever he can to keep them out of his ears and in his pockets. The teachers are aware of his need for the aids, and they do their best to keep on him about keeping them IN HIS EARS……but, with a class full of students….and the chaos that accompanies a new school year, it is hard to focus on one child…..so we (Rebecca and I) need to find a way to make him responsible enough to do the right thing.
On that note…..anyone with knowledge of….or access to…….brain reconfiguration surgery, PLEASE email us with that information….we will gladly sell our home and live on the street if the procedure will get us back our little innocent 6 year old child that did everything we asked and tolerated every horrendous treatment the doctors could throw at him.
Overall….school has been going pretty well though I think. He has only missed one day…from a stomach ache……..he is having post chemo-week constipation……or…he is having stress induced constipation…………hard to tell anymore. Either way….he is having bathroom issues. We attended open house the other night, and he did seem to take some pride in being able to navigate his way around the campus to show us each classroom. I firmly believe that if we can keep him on track for a few more weeks, he will realize that being in school….with his friends……and other kids his age……is EXACTLY where he needs to be!
Now….on that note…….while we’re talking about school….and school-like things…..I want to mention something that has caught young Zachary’s interest at school. BUT, being the ever-careful person that I am, I am going to do this in the MOST correct way that I feel will avoid violating any rules or regulations here at Caringbridge.
Excerpt from rules:
RESTRICTIONS ON YOUR USE OF THIS SITE
You agree not to use this Site to:
……….any request for or solicitation of money, goods, or services for private gain.
OK…don’t panic…..I’m not going to ask you for money.
Well…..I AM going to ask you for money…..just not for our “private gain.”
Well…..that is not entirely true…because if the “said money” were to be pledged to the “said Zachary”, then the “said Zachary” would receive somewhat of a “said benefit”, or otherwise, “gain.”
So, here is the deal. Zachary’s school is doing one of those cheesy fundraisers, where he knocks on every neighbor’s door and tries to get them to buy wrapping paper, chocolate, or some magazine subscription. Some of the prizes (said benefit) have interested little Zachary. He definitely wants the autographed photo of the Miami Heat Dancers, (I don’t know where he gets this fascination with half naked gorgeous women?), and then of course there is the larger prize of getting to ride in a Hummer limousine to the party for the top sellers.
The folks at these fundraising companies have gotten quite clever. They now have an online catalog where you can go and shop…….pay for……..and receive items without having to even be in the same city as the child soliciting the goods. (That sounded bad…child soliciting goods….hmmmmm….should have rephrased that.) BUT, there is the whole issue of “Not selling on this site.”
So…this is my master plan. So far….all I have done is told you a story. Maybe it is true; maybe it is just a story. SO…for those of you that are truly curious and want to find more, if you email me at: srfinestone@hotmail.com I will gladly provide you with the link to the fundraising company, the code for Zachary’s school, and the code for Zachary. All of THAT information will arm you with the ability to not only buy WONDERFUL items and gifts, but to give young Zachary the credit for those many, many purchases that you may or may not be making.
(The previous statements have not been reviewed by an attorney and should not be deemed to have not violated any rules or regulations that they may or may not have been violated….or not.)
I don’t know…I make this $#it up as I go along.
Other than all of that…….we are hoping to have a quiet, argument-free weekend. We may fish a little bit, (although I had to procure another rod….Rebecca broke one last weekend on a 2-3 pound Jack.), but mostly we’ll be taking it easy…..maybe see a movie.
Scott
P.S. Please do not in any way feel obligated to email us asking for the web page and code information for Zachary’s fundraiser. I don’t want anyone out there feeling like they need to help poor innocent Zachary out with this one lone wish that he as expressed. Also, I wouldn’t want anyone feeling like they NEED to help him, because of his illness or many, many years of battling the monster. Any guilt over reading these HIGHLY ENTERTAINING journal entries for the past several years without so much as guestbook entry should be dismissed. I recognize that the many, many lurkers out there that could EASILY push Zachary’s numbers into the stratosphere, have much more important things to do, and shouldn’t be bothered with such a mundane request…....a request that could easily sway his demeanor into one of elation and glee by helping him to achieve the high goals that he has set for himself.
P.S.S. So, enjoy your weekend and don’t give any of this a second thought.
Thursday, August 10, 2006 4:41 PM CDT
I have been weweased. They have wet me go. (Why am I still typing with my tongue then?)….There that’s better.
I am no longer a patient of St. Agnes’.
The Smigma (sorry….couldn’t resist) saga was never fully resolved. We did find out that the oncologist’s office was entering a field on Zachary’s claim labeling him as “child” instead of “self”. Zachary is self-insured. It is one of those mysteries that will never be solved. When his cobra ended a few years ago, keeping Rebecca on his policy was too expensive…and she got a job that offered insurance….so we were given the option of having his cobra policy become a conversion policy……and he was the only one on the account….so he is self-insured. (That is the reason that Smigma routinely refuses to speak with either Rebecca or me about his account……because we are not the policy holders. (Although I believe that after a year or so of complaining, they have finally made an indication on his account that lets the customer service representative know that we are the custodial parents….and we can speak for him.)
School started yesterday….and not without drama. The night before school started, Zachary was crying before bedtime. This was like torture for me. To see him so distressed about life in general….it pains me. He is very sensitive about his short hair, and his hearing aids. He HATES his chemo…..the very thought of it makes him nauseous. He now has a routine for taking medicines that drags it out for nearly half an hour…….and is quite painful to watch. He asked the other night if his chemo could be injected with a needle directly into his stomach. (I don’t think he was kidding either…he really hates the flavor.) We have tried everything to mask the bitterness of the drug. Rebecca even had the president of the major flavor company for medicines mixing up a special batch for us to try with Zachary. None of it seems to work.
It is hard to convince a 12 year old that is entering puberty that life could be worse. It is hard for him to appreciate that there are many other Neuroblastoma kids that have to endure much more intensive and invasive treatments to stay alive. I guess it all comes back to everything being relative. We have friends that would gladly take our treatment regimen if it could bring back their child. We have other friends with healthy children that look at our situation and find themselves thanking God each and every night that they don’t have to endure the treatments or make the decisions that we are faced with constantly. It is all relative. When I think about the balance of life……and the friends that we have……I find myself not wanting to EVER dishonor the memory of lost children by complaining about seemingly trivial things….like the flavor of a medicine…..but at the same time…I don’t want to trivialize the anguish or psychological effect that fighting cancer for 6.5 years has had on Zachary.
We have many friends from both camps that visit this site and that keep us in their thoughts and prayers. We are very grateful for both groups.
Zachary has some serious issues (psychological) that he is facing. I don’t want to go into too much detail on here….but we were recently made aware of just how depressed he sometimes gets. (Thank you Audra for your help with that.) We are working with him daily to face the challenges that are thrown at us…..and we are working with his doctors to ensure that he has as much help as possible in dealing with the anxiety that seems to be torturing him right now.
The first two days of school seemed to go well. Two of Zachary’s best friends go to this school….and he has one class with each of them. So that is a very good thing. They are looking out for him…..and I remain hopeful that if any other children tease or pick on Zachary….that his friends will be there for him. Middle school can be brutal. I still have nightmares about school……and almost always….they are middle school nightmares.
Rebecca just changed jobs. She had been working with Connor Moran Children’s Cancer Foundation for about two years. They are one of the two local charities that do a lot for the families in our region. Rebecca loved helping other families, but their office is about 40 minutes away…….so between the high fuel expense, and not being nearby when Zachary needs to be picked up from school for illnesses (which happens a lot), it became apparent that she needed to make a change. The local bowling alley where she used to work needed help, so the timing was perfect. They are very aware of Zachary and his health issues…so if she needs to take time for doctor’s appointments or treatments, it won’t be a problem.
Scott
P.S. I had an interesting story from my sales route yesterday. I usually bring my Sirius satellite radio with me in my work truck so that I can listen to the Howard Stern show. Well….Howard and the gang are on vacation this week…..so Rebecca suggested that I take my Ipod along with the cord that allows you to play the music through your stereo system. (Seemed like a good idea.) So….I got it hooked up…..set it on “shuffle”, so it would randomly select songs from my play list….and went about my route. It worked great. At one point during the day…I was driving through Riviera Beach. Now…for those of you NOT familiar with Riviera Beach…it is quite possibly the roughest neighborhood in Florida. (There may be some sections of Miami that are worse.) I actually used to work for Walgreen’s in Riviera Beach….and back then…we kept a photo album at the front door of all of the people that had been arrested for shoplifting….so that when they came into the store…we could immediately call the police and have them removed. So…anyways….there I am….driving through the ghetto……and guess what comes on my Ipod……”Gangsta’s Paradise.” Hmmmmm…..well….I have that song on my list…because I happen to like it. So….there I am…driving along…blasting “Gangsta’s Paradise”….thinking….hey….if I rolled down the windows………the folks in the ‘hood’ would think I’m a pretty cool guy……………….now…….thank GOD it was like 90 degrees….and thank GOD I was blasting the A/C and had the windows up, because when THAT song ended……..”Knowing Me, Knowing You”, by ABBA came on. I can only imagine that I would have been shot at….at the least……and carjacked and murdered…..at the worst….had THAT song been blasting out of my windows, in that neighborhood. (Lesson learned.)
Saturday, August 5, 2006 2:36 PM CDT
Thang yu for visitng the page today and I apologiz for the sloppy typng. Sadly I am forcd to type this entry wilth my tongue.
This is wat happened.
Tha reson I am ritng wilth my tongue is that I am in a strate jacket. I waz admitted to St. Agnes hospitl for the insane or otherwise disturbd. Tha only way they wuld let me use a keybord is if I promisd not to try and eat the keys to choke myself.
Smigma, (I sorry….I ment Cigna)…….tha Smigma drama came to a frenzied peak yetherday. Zach’s oncologist’s ofice calld and said that ther claims wer being rejectd by Smigma. I immedlkjs…..I immedialksj……I immmediatllkjs……right away I calld Smigma. I usd the contac that I had frum a long time ago. She lookd up Zach’s file and found that his policy was going to expire. We dithcusd that at lenth and she suggestd that I cal the converzen dept…..sinc he has a canverzen policy. She promisd to work on tha problm also.
I waz not at home, so I heded ther to get the numbr of the converzen dept. Wile I waz drivng ther, my fone rang AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH…..(sory about that, too much slobbr on tha keys…..electrocutd myself)…..anyhow…..the fone call was (boy that stings…) frum the Smigma operatr frum last week. She was callng to let me no that they had fixd the problm and that all was now wellll. (Hmmmmmmm….the plot thikens.) I explaind to her what waz goin on, and she becam more confuzd than she alredy waz. She agin promsd to lok into it…….agin.
I got hom and found the numbr. I calld the converzen dept. and they said Zach’s policy waz fine and that ther was no problm. Again…I explaind what waz going on and she promisd to look into it sum more.
This is about where I startd to cum unglud and got myself admitd to St. Agnes’s hospitl for the insane or otherwise disturbd. I don’t no how long they wil keep me here, but this strate jackt sucks.
Scot.
Tuesday, August 1, 2006 7:03 PM CDT
I hadn’t planned to write another journal entry so soon, but I wanted to get this across while it was fresh in my mind. (Small minds are like that….you have to empty them more often or you just lose the thoughts.)
Zachary has gained back his weight! I know this because his pink eye and sinus infection returned…..and I know THAT because he woke up Friday morning with eyes swollen shut and a stuffy nose….so I got him an appointment with his local pediatrician. AND that….is what prompted this story.
You see………as loony as I am…….I am occasionally blessed with a logical thought or two. Here is what I came up with. I knew that Zachary’s oncologist had called in eye drops for the pink eye that Zachary had finished with a week earlier. (There were still plenty of drops in the bottle….the seven day course had ended.) I also knew that he did NOT have a fever, but was probably highly contagious with the pink eye. I didn’t want to A). expose any other oncology kids to his pink eye, and B). make him sit in a car for a 45 minute drive down and then back again. So…..I called his local pediatrician (whom he had not seen in over a year) and made an appointment. I then called the oncologist’s office and explained my plan. They agreed that going to the pediatrician was better for everyone and that they just wanted to be kept in the loop as to what the local doctor said.
So far….everything was going as planned.
Now….Zachary’s local pediatrician had long ago packed his bags and left the state of Florida. He had been replaced with a couple of other doctors that we had heard good things about. A few minutes after making the appointment, that office called to inform us that they were getting a “Policy not active” message from Cigna when they tried to access their automated system to make sure that his insurance was still active. Hmmmmm. Rebecca reread the policy number to them and let them know that I would be bringing a copy of it with me. I arrived at the office about ten minutes early (always planning ahead) and again they said that his insurance was not active. Hmmmmm.
Not active.
Cancelled.
Not usable.
OK………..so……..if his insurance is “not active”, then how in the hell is our local oncology office getting paid. I mean…we’ve been using the same policy for almost two years now…..so….we’ve gone over to Ft. Myers for testing ($16,000 per trip), and we’ve had 25 rounds or so of chemo…….($$$$$?????)……..so what gives?
They had me keep Zachary out in the lobby waiting area away from the other kids…..and they asked that I call Cigna and have them fax over confirmation that he is indeed insured. I called the phone number on the card….and I went through the obligatory automated system. It asked for his ID number….which I provided….and it promptly informed me that his ID was, “Not a valid ID in their system.”
(Oooooh….that could prove to be a bit awkward.)
Because I am blessed with eternal patience……I pressed the ‘0’ key to get to a LIVE person. The automated system didn’t like this…..it tried repeatedly to get me to make a selection OTHER than ‘0’ so that it could “better route my call.”
I DIDN’T WANT TO BE “BETTER ROUTED.” I didn’t want to be ‘routed’ at all! “Routing” didn’t sound like a lot of fun to me. I wanted a human…….not another robot.
I finally got through to an operator….and after explaining my dilemma; she informed me that “Your son’s ID is not on file as being active.” Hmmmmmm. (OK…..I will admit that at this point in the saga…..my eternal patience MAY have been stretched to its limits……and my blood pressure MAY have escalated somewhat…..)
“Not on file as being active you say?”
“That is correct.”
“That is NOT correct……he is an oncology patient….he gets seen by his oncologist every single week….he gets chemo two out of every three weeks……for the past two years we have been doing this….with an ACTIVE account.”
“Hmmmmmm….please hold….let me transfer you to a different dept.”
“OK…….you do that.”
(Insert Jeopardy music here.)
(Pause)
(Pause)
(Pause some more)
“Hi…….how may I help you?”
(Re-explain story.)
“Yes….I see your son’s ID right here….his account is active and fine.”
(Pause)
(Pause some more).
“OK…..could you please fax over something to his pediatrician so that I can get him treated for an illness?”
“Sure…what is the phone number?”
(Providing phone number.)
“Good bye.”
“Good bye.”
So….he had a sinus infection and needed an antibiotic….and they had us continue with the eye drops. Both seemed to work…because his eyes improved quickly.
I of course was NOT through with Cigna. When I had some free time, I called them back and once again the automated system couldn’t find his ID….and once again I tried to get an operator…..and once again the system fought me…..and once again I persisted….and once again I got an operator…..and once again she couldn’t find his account on file….and once again I got transferred to another operator….and once again that operator was able to find his ID. (Whew…..that took a lot of oxygen to say all of that.) So I casually explained that while I thoroughly enjoy playing games with Cigna all day long…the sad truth is that occasionally Zachary needs to see a doctor OTHER than his oncologist….and God forbid we needed an emergency room….I would be VERY put out if I was told again that he did NOT have insurance coverage…when we all know that he does. She agreed and asked that I hold so she could call the automated system herself to see what it did. She came back on after a minute or so and agreed that there was a glitch somewhere in the system. She, along with a supervisor informed me that they had never seen this before and that they had no idea as to how to fix the problem. They asked me for contact information and said that they were going to start making calls to higher ups, in an attempt to resolve the issue. They also said that they would call me back with results.
That all happened on Friday…..today is Tuesday…..I have not heard back from them yet.
BUT…..I did get a call yesterday evening from a survey company that was calling on behalf of Cigna and my most recent phone call with them. Hmmmmmm…..(You’ve got to be kidding me…….are they that stupid?)
What I love most about those Cigna surveys is that they only have a scale from 1 to 5. 1 being “poor” and 5 being “great.” The other great thing is that they ask questions that are so generic it is almost impossible to give an intelligent answer.
For example….if they ask, “How would you rate your call overall?”
“Well…..the operator was certainly sincere enough…she seemed to care about my problem and she wanted to find a solution……however……she was unable to remedy the problem…..so am I rating the operator on how she spoke with me…or on her ability to fix the problem?”
“Sir….you need to rate the call overall with the scale from 1 to 5.”
(Unbelievable.)
So……I proceeded to give a series of ratings……..that were mostly generic…..and then she asked me about how I felt towards Cigna as a company…….big mistake……I asked if I could use a number lower than ‘1’….she didn’t like that.
Idiots.
Basically….they are asking questions that they have absolutely NO interest in hearing the answers to.
Oh well….I will try to remember to update you if this saga ever ends……don’t hold your breath.
Today Zachary had his wellness checkup with the same pediatrician’s office…….and as part of that exam…he needed to have his private area checked…….and Zachary is used to having his oncologist….who is a man…..do that exam……he is NOT used to…..ANY female examining him….or even talking about seeing that area on him. Unfortunately, there no longer is a man at that office……so we really didn’t have a choice. Zachary was uncooperative….to say the least……he ended up getting grounded and lost many of his electronic devices…….including but not limited to his cell phone, his computer, his TV, and his Xbox.
He ended up getting the exam…..and living through it.
Scott
Thursday, July 27, 2006 4:48 PM CDT
THE PRE-TEEN MONSTER
(A cautionary look into the mind of a pre-teen boy.)
About a month ago Zachary informed us that he wanted a page on MySpace. Hmmmm.
Well……as luck (or bad luck) would have it, Rebecca and I had just watched a special on Dr. Phil about kids, responsibility, and how things can go haywire. There was this one mother that wanted to test her son to see if he would follow their agreed upon rules regarding MySpace. The boy was supposed to only be exchanging messages with friends that he already knew…..any unsolicited messages were to be ignored. (Sexual predators have had a field day with that site…..targeting youngsters and luring them into online relationships and eventual meetings.) So….back to this mom….she created a fake MySpace account and attempted to contact her son with messages to see how far he would let the “relationship” go before following the rules. That particular family turned out to be a success story. The boy didn’t divulge any personal information, and he never let the conversation get out of control. He followed the rules!
Hmmmmm……does any one out there see where this is going?
Do I need to provide some more hints as to what happened in OUR little experiment?
Have you NOT followed the annals of Mr. Zachary over the past few years?
OK…..in my defense……when I heard that Rebecca had allowed Zachary to open a MySpace account…..I didn’t know that there is an age restriction (that he lied about online to get the account.) She did lay down the rules…..and he of course agreed to them. No messaging with ANYONE that he didn’t know personally. No foul language. No personal information traded online WHATSOEVER! (You know….the logical stuff.)
So…….that same night that Mr. Zachary was having fun setting up his page and exchanging messages with his group of friends that all have MySpace pages and are ALL under the minimum age requirement………I mentioned to Rebecca that I wanted to test young Zachary. I proceeded to create a fictional page for a girl I named Carolyn. Carolyn became a 15 year old (he likes older women) girl that…..as luck would have it…lived in Jensen Beach….(what are the odds?) Carolyn likes Harry Potter (amazing isn’t it?), and swimming, soccer……..(is any of this sounding familiar?) All I needed was a believable photo of a girl that fit the age profile and was of course….blonde. (Don’t ask.)
I toyed with the idea of using a photo from a few years ago of a nice girl that we met over in Ft. Myers….but I was pretty sure that Zachary would remember her……..so we started looking online for an acceptable photo. Without going into too much detail as to WHERE we found a photo……..I’ll just say that the website contained a somewhat dubious content that is NOT appropriate for minors………but the face looked somewhat believable. So we copied the photo into the editor, cropped it to show ONLY the face, and added it to the profile. We now had a young looking, blonde, 15 year old, Jensen Beach girl that had many of the same interests as our young Zachary.
Evidently, MySpace has a “guard” on the pages of younger users that prevents you from messaging back and forth until the young user “accepts” an initial incoming message and adds you to their friends list. I sent a quick message….saying something like, “A friend told me to message you.” It took young Zachary about 20 minutes to find the incoming message and about .000004 seconds to respond. To his credit, he DID ask immediately, “How do I know you?” There were a couple of more messages back and forth that didn’t violate too many rules, (other than the whole, “Not messaging with people we don’t know” rule.) Then Zachary was sick…..and then I was gone for a week on business….and THEN I got home. Rebecca informed me that I had unanswered messages from young Zachary that I needed to respond to. He had grown inpatient waiting for me to explain exactly how I found him………which is a good thing…..BUT, (don’t you just love those ‘buts’?)…..he sent a message with his cell phone number asking me to call him so he could figure out who I was. (Oooooops!)
The last message that I received from him was full of foul language and words that I’ve only ever heard used during sporting events and while in college. (He was growing angry because I hadn’t told him how I knew him.)
OK…..at this point….he had violated virtually ALL of the rules that we had given him..along with 5 or 6 international treaties and laws. We decided to end the charade and confront him directly with the charges that we had in hand. (Sure….we could have waited until we had some felonies to throw at him…..but we felt that he was a flight risk, so we chose to act now. We called Zachary into our room and immediately he knew that he was in trouble for something….he didn’t know what….but he switched on his “attitude” button and prepared for war. I pulled up the message that he had sent that contained most of the 7 deadly words that are banned from TV and radio…….he immediately denied sending the message. (Hmmmmmm……it came from his page and was signed with his photo.) He claims…that while a friend (girl) was over the day before, he showed her the messages from Carolyn and the friend didn’t like the fact that some older girl was messaging him, so she wrote the nasty message FOR Zachary. OK, are any of you buying this? Hmmmmm…..don’t answer that. I decided to move on. I pulled up the message where he gives Carolyn his cell phone number and asks her to call him. He tried to side-step that infraction as well…..although not too successfully.
The BIG violation of the night came when I tried to explain to Zachary that even if HE hadn’t typed the obscene message to Carolyn, anyone out there in computer land would assume that he HAD sent the message…..since it came from his account…..with his photo on the page. (This is where he disintegrated into a pit of lies and despair in an effort to save his butt.) His response was this. “Carolyn wasn’t offended by the message, I called her and she knows that my friend sent it and not me.”
WHAT????
WHAT????
ARE YOU KIDDING ME????
DID YOU JUST SAY THAT YOU SPOKE WITH CAROLYN????
ARE YOU INSANE????
CAROLYN DOESN’T EXIST…..WE MADE HER UP!!!!
(Confused look on Zachary’s face.)
“You made her up?”
“What do you mean you made her up?”
“We made her up….she is NOT a real person….we wanted to see if you would follow the rules.”
“OH…..so you LIED to me…….you both LIED to me!”
(You’ve got to be kidding me……he just violated every rule and moral that we’ve ever handed down to him…..and it’s OUR fault.) (The kid is a genius.) (Sign him up for the space program or something……)
After a few more minutes of explaining how things work not only in the real world…but more importantly in our house…..Zachary apologized and recognized the mistakes that he made. He is now officially on VERY thin ice with the whole MySpace thing……I can see why young kids should NOT have these things….they are an accident waiting to happen.
Zachary continues to feel better each day from his illness…..I remain hopeful that he is gaining weight. I just got back my voice….somewhat….it is still very scratchy.
Scott
P.S. The moral of the story is this. “You may think that you are chatting with an attractive 15 year old girl….but in reality it is a 43 year old goofy looking bald guy.”
Monday, July 24, 2006 6:06 PM CDT
I was just reading some of the guest book entries relating to my 7/21 journal update and I went back and reread what I had written. I didn’t realize how tired I was when I wrote that. (Recovering from jet lag or something.) I missed a lot of information that I had planned on including.
First of all….we are now in day #5 of no voice for me. (Laryngitis maximus.) I have had colds before that ended up taking my voice, but usually after a day or two of no talking, I get it back. This time……no such luck. The good news is that Rebecca and Zachary are enjoying an unusually quiet household while I suffer to communicate. (Try whispering to a boy that requires hearing aids but refuses to wear them around the house.) After I got back off of the road today I decided to swing back over to my doctor’s office. They rechecked me and thought my lungs sounded funny. So…..they took some x-rays and found nothing….no pneumonia! BUT, she didn’t like the way I sounded, so she put me BACK on antibiotics. (She pretty much guaranteed that I WILL get diarrhea…..oh great.)
Zachary on the other hand seems to be improving. He still is battling a mild cough. I forgot to mention in my last journal update that while I was gone last week, he lost about 6 or 7 pounds from being sick. That may not sound like a lot, but it amounts to almost 9% of his body weight. And yesterday he vomited again…(from chemo I think), so there is somewhat of a concern that he has lost a bit too much weight……he sees his doctor on Monday, so we’ll see what they say. Today he went on the road with me for half of a day…..supposedly to help out. I had asked him to walk into my customer’s stores with me so he could tell them that I had laryngitis…….that plan lasted about 2 seconds. (I’m finding that 12 year olds don’t have much use for adults……or communicating with them.) The real “moment” of the day came when my cell phone rang and I asked him to answer it……..now ANY sane person with an IQ over 6 would recognize some obvious things at this point:
1). Dad has no voice….thus….he is handing his phone to me to answer.
2). Dad gets important calls from customers.
3). Dad’s customers won’t recognize my voice.
4). I should introduce myself immediately and explain why I am answering his phone.
5). I should do all of this without having to put much thought into it.
If you chose any or all of the above 5, you would be mistaken. My genius son takes the phone from me and first…..stalls….while looking at the caller ID…..like it is his phone or something???????? WHAT THE HECK??? I didn’t hand it to him to admire….I needed it answered!!!! I make some sort of wild motion that lets him know I need him to actually OPEN the phone and talk. He opens the phone and says, “Hello….this is Zach.”
????????????????????????????????????????????????????????????????????????
HOW IS ANYONE THAT IS ON THE OTHER END OF THAT CALL GOING TO KNOW WHAT THE HECK IS GOING ON????
The customer hangs up….AFTER telling Zach that they must have the wrong number…..he closes the phone and hands it back to me.
I flip out!!!!
I may have actually blown a gasket in my head…..(I’m not sure if there ARE gaskets in human heads…but if there are….I blew one.)
We ended up meeting Rebecca for lunch at her work and he stayed the rest of the day with her. (I whispered my way through the remainder of the day.)
Scott
Friday, July 21, 2006 8:01 PM CDT
Well….in case you missed it….my last journal entry included the entire play list from my Ipod. Surprisingly enough I didn’t get ANYWHERE near the amount of abuse that I thought I would in the guest book. In fact, it seems that I have a new legion of fans…..(granted they are all between the ages of 15 – 19)….but hey….a fan is a fan!
I have been out of town since Sunday for business, so I haven’t had a chance to compile Zachary’s Ipod list yet for all of you that asked. His list has over 200 songs on it now. I promise to get to that sometime soon.
It has been an interesting and drama filled week.
Last Friday, I got sick. Zachary was already fighting an illness, and I got some bug. I ended up having a fever and feeling pretty crappy, so I went to my doctor to see if they wanted me on an antibiotic. (I was flying out of town Sunday and knew that if I got worse on Saturday I wouldn’t be able to find a doctor.) I got the medicine, and Friday night Zachary spiked a fever of 102. Now……for those of you in the ‘know’, a fever over 100.5 has always meant an immediate trip to the ER and a 3-4 day admission to the hospital. We called Zachary’s doctor and he was already aware that Zachary had been fighting pink eye….so he was taking drops for that. The doctor was pretty confident that the fever was related to that, so he allowed us to treat the fever with Tylenol and had us watch him closely to make sure his fever didn’t get any higher. Saturday he was a little bit warm….and I was feeling just so-so. Sunday Zachary seemed to be getting better and I thought I was well enough to travel. (Big mistake.)
The only saving grace to this story is that my business partner and I had saved up a ton of reward points for this trip and we were able to fly first class. I HIGHLY recommend that if any of you need to travel by air….you become super wealthy and buy first class tickets. It is a MUCH better way to travel. I was miserable on the planes…(yes……plural…..we had one flight to Salt Lake City and then another to L.A.)….the turbulence had me nauseous, and my ears felt like someone was sticking ice picks into them. Other than that…the flights were great. We landed in L.A. at about 10pm local time there…and had to then rent a car and drive about 45 minutes to our hotel. When we finally got settled into the Best Western……..it was after midnight local time…..(but 3am in our bodies EST.) Things went downhill after that. The hotel was right next to railroad tracks, so for any of you that have seen My Cousin Vinnie, you know what is coming next. We had at least two or three trains come through during the middle of night…..1am….3am….4:30am…. It pretty much sucked big time. Monday was a meeting day with our California reel manufacturer, so we did that…..then we switched our hotel to one closer to the airport and further away from the trains. It also saved us from an unholy traffic problem Tuesday morning when we were scheduled to leave. We flew to Las Vegas for our trade show Tuesday morning…and luckily I had packed Dayquil tablets to help with my sinuses. That flight was uneventful. We arrived in Vegas and checked into our hotel (also purchased with reward points.)
Now…this is the part in the story where I start to lose sympathy from my faithful fans. My partner and I had wanted to golf in Las Vegas…..it is very scenic and we had made a tee time a week before heading out. I was feeling a lot better, so I figured…”Hey…what the heck…why not?” Well the course was amazing! Beautiful, scenic, and I played the best round of golf that I have ever played. I almost broke 100! (102). The ball evidently travels further in the dry air. The bad news is that we WERE playing in a desert. I think the temperature was like 105…..in the shade….with the wind blowing. The key to avoiding trouble is drinking…..a lot…….I mean A LOT. If I had thought ahead….I would have bought stock in Gatorade and bottled water…because we drank a ton……….I think I lost like 15lbs.
So…..I don’t know if that round of golf did me in….or if my illness from the weekend was just lingering….but I slowly went downhill after that……….I never acquired much of an appetite…..and I was in bed early each night. By Thursday afternoon my voice was leaving me…..and by Thursday night it was gone! We flew back this morning….and I haven’t uttered a word all day. Our flight plan took us back through Salt Lake City…and once again I took medicine to help with my ears……..I was able to sleep a little on the planes….and we got to see another movie. (Did I mention how nice first class is?) Hot towels when you sit down……..drinks from minute one until you depart the plane. (Sadly I never got one drink….not one soda…..they give you water bottles at your seat)…..a meal on both long flights……and the free movie thing too.
Meanwhile back on the home front….Zachary was scheduled to see his doctor on Monday……and Sunday evening he had spiked another fever. So…Rebecca packed an overnight bag in case they wanted to admit him on Monday. Luckily they did not. They put him on some oral antibiotics and he ended up improving after that…..he developed a cough from the post nasal drip…..but his fever is gone.
I am home safe and sound…without a voice……..hoping to sleep well tonight.
Scott
Thursday, July 13, 2006 4:12 PM CDT
Hmmmmm.
(Long pause.)
(Even longer pause.)
[Pondering] “This music thing from my Ipod has gotten WAY out of control……now everyone is just salivating at the chance to humiliate me over my music tastes.”
[Pondering some more] “I could create some new controversy and try to deflect the topic into something that would eventually have everyone forgetting that I ever brought it up….but I’m guessing that the likelihood of that working is slightly less than the probability of us winning the lottery…..every day for the next year…in every lottery in America…..without buying any tickets.”
[Pondering yet some more] “I could lie….and make up some really cool sounding masculine song/artists……and hope that everyone buys into that…..but then I would be no better than any other author/writer that embellishes their stories to make them sound more interesting.”
[Decision time]
WOW…what a week it has been….in case you missed the news, we had a category 92 hurricane come on shore right where we live! As the 3,816 mph winds were whipping across the region, 58 tornados were spawned, and ALL of them touched down right on our house……and if THAT wasn’t enough……the 318’ tidal wave that accompanied the storm washed inland and submerged our house. The good news is that we made it through the storm and our house survived….the bad news is that during the storm we had a slight power surge and I lost all of my song list from my computer and Ipod. (How freaky is that?)
(Is anyone buying this?.....because if you are…….I’m starting a new business where I will be selling shares in a post-apocalyptic secure lunar outpost that will comfortably house 10,000 people for up to 6,000 years. The cost for securing a home in this outpost is a mere $10,000 per person. (Children under 8 get in for $5,000, and senior citizens get in for $3,500.) I haven’t done any research into the plausibility of such a facility, I haven’t spent a dime on construction or planning….but WHEN I do….your monies will guarantee you a place with us on the moon!)
HEY….how about that All-Star game eh? Great finish……..suspenseful to the end! (Does anyone know who won or what happened….because if I’m going to distract you with this crap….I’ll be needing details?)
BOY…the stock market took a hit yesterday…….we should probably be discussing the long-term outlook of some of the blue chip stocks and how the economy is going to be affected if crude oil keeps going up. There is also the precious metal market to watch out for….AND the shortage of affordable housing that is haunting the south right now. (Someone throw me a bone here….I’m drowning.)
Ummmm……hmmmmmm…….errrrrrrrrr……OH YEAH…..did you hear about this global warming thing?.......Wow…..that’s a bad thing…..right?........hmmmmmm… We should discuss this……at length…………(where to begin…..where to begin…)
OK…..I GIVE UP…..YOU WIN………I am going to provide THE LIST. I am warning you though…(like I have a leg to stand on,)……….if I get picked on…..more than a lot….like…..more than 60 or 70 guest book entries….then I’m going to………ummm I’m going to…………ummmmmm……I’m going to do something…..I don’t know what it is……..probably nothing much knowing me……..but you’ve been warned non-the-less.
So……after all of that build up….here is the list of songs with artists. The songs are in alphabetical order….as if that helps my cause any.
99 Luftballoons - Nena
A Moment Like This - Kelly Clarkson
Amazing - Aerosmith
Angels Among Us - Alabama
Ava Maria - Nicole
Bad Day - Daniel Powter
Because of You - Kelly Clarkson
Bless The Broken Road - Rascal Flatts
Bohemian Rhapsody - Queen
Breakaway - Kelly Clarkson
Come Sail Away - Styx
Cryin' - Aerosmith
Dancing Queen - ABBA
Don't Cry For Me Argentina - Madonna, Antonio Banderas, Jonathon Pryce, Jimmy Nail
Donut Lady - Brian Regan
Dou You Hear The People Sing - Anthony Warlow (Enjoiras)
'Down in the River to Pray - Allison Krause
Fernando - ABBA
For Crying Out Loud - Meat Loaf
Friends In Low Places - Garth Brooks
Gangsta's Paradise (Amended LP Version) - Coolio
God Bless the U.S.A. (Proud to Be an American) - Lee Greenwood
Goodnight And Thank You - Madonna, Antonio Banderas, Jonathon Pryce, Jimmy Nail
Hallelujah - Rufus Wainwright
Hello Again - Neil Diamond
Holding Out for a Hero - Bonnie Tyler
I Don't Want to Miss a Thing - Aerosmith
I Dreamed A Dream - Debbie Byrne (Fantine)
I Will Always Love You - Whitney Houston
If Tomorrow Never Comes - Garth Brooks
I'm Not a Girl, Not Yet a Woman - Britney Spears
In Between Dances - Pam Tillis
Knowing Me, Knowing You - ABBA
Looks Like We Made It - Barry Manilow
Making Love Out of Nothing At All - Air Supply
Mandy - Barry Manilow
Master Of The House - Gay Soper (Madame Thénardier) / Barry James (Thénardier)
Modern Major General - VeggieTales (Veggie Tunes)
On This Night Of A Thousand Stars - Madonna, Antonio Banderas, Jonathon Pryce, Jimmy Nail
Only Time - Enya
Paradise By The Dashboard Light - Meat Loaf
Piano Man - Billy Joel
Seat Belts - Brian Regan
Show Me The Way - Styx
Sister Christian - Night Ranger
Skin - Rascal Flatts
Somewhere In The Night - Barry Manilow
Somewhere Over the Rainbow / What a Wonderful World - Israel Kamakawiwo'ole
Somewhere That's Green - Ellen Greene
Stupid In School - Brian Regan
Suddenly, Seymour - Rick Moranis & Ellen Greene
Symphony #5 in C minor I Allegro Con Brio - Ludwig Van Beethoven
Take A Chance On Me - ABBA
Take Me Home, Country Roads - John Denver
Thank You For The Music - ABBA
The Final Countdown - Europe
The Flame - Cheap Trick
The Music Of The Night - Andrew Lloyd Webber
Theme from "Greatest American Hero" (Believe It or Not) - Joey Scarbury
Think Of Me - Andrew Lloyd Webber
Through the Eyes of Love (Theme from "Ice Castles") - Melissa Manchester
To Where You Are - Josh Groban
Total Eclipse of the Heart - Bonnie Tyler
Two Out Of Three Ain't Bad - Meat Loaf
Unanswered Prayers - Garth Brooks
Unchained Melody - Righteous Brothers
Weekend In New England - Barry Manilow
What About Me? - Moving Pictures
What She's Doing Now - Garth Brooks
When You Say Nothing At All - Alison Krauss & Union Station
Whiskey Lullaby - Alison Krauss Brad Paisley
Wishing You Were Somehow Here Again - Andrew Lloyd Webber
Wizards In Winter (Instrumental) - Trans-Siberian Orchestra
You Belong To Me - Jason Wade
You Don't Bring Me Flowers - Barbra Streisand & Neil Diamond
You Raise Me Up - Josh Groban
You'll Be In My Heart - Phil Collins
Your Wildest Dreams - The Moody Blues
OK….there you have it…..let the games (and abuse) begin.
Scott
Sunday, July 9, 2006 6:20 PM CDT
In case you missed my journal entry from 7/7, there is now a collage of photos from our Arkansas vacation in the photo album. (And yes…..there is one of Zachary skiing.)
Zachary got back from camp yesterday morning…..and he was in rare form. As he gets older, it has become more and more apparent the he has a mischievous side to him that was probably amplified once he got around all of the other kids that he knows from camp. I can only imagine what the camp counselors went through trying to keep all of the older kids in line. (We didn’t get a bad report from the camp….so that is a good thing.)
Zachary has been pretty tight-lipped about what all transpired during his week away…but he has said that he slow-danced with a couple of girls…….so once again our little Casanova has come out of his shell. He lost his list of phone numbers and emails….so he is trying to contact some of his friends that he already had numbers for to piece back together the information that he lost. All in all he had a wonderful week.
The weather didn’t cooperate this weekend, so I didn’t have a chance to take Rebecca out fishing so she could catch bigger fish than me yet again. We took it easy Saturday morning until picking up Zachary. Late yesterday we went out and bought an Ipod Nano (240 song version)….I gave up on the cheap MP3 player that Rebecca and I had played with for the past week. It will get cleaned off and donated to a child with cancer….(cancer and a lot of patience.) The Ipod last night almost broke my spirit completely. The only reason I stepped up and spent the money for the Nano is that Zachary and Rebecca assured me that they could easily transfer songs from the CD’s and from the computer to the device. About two hours into the project…..I was looking for a mountain to jump off of….(its pretty flat here in Florida…..no luck.) Finally we got it straightened out.
You would think that they would make it so basic and simple and idiot proof that anyone could instantly start loading music (and hopefully buying music) onto their device. There were SO MANY library windows and options……..very aggravating.
And this brings us to the subject of what music was put onto the Nano…….hmmm….I am not convinced that it is in my best interests to reveal my song choices just yet. I’m placing a temporary moratorium (59.4 years) on revealing the song titles.
OK……maybe I’ll change my mind…….I have to work up the courage…….but can you blame me?….someone already accused me in the guest book of liking the Weather Girls and their “It’s Raining Men” song…………..how insulting! (Thank goodness I only have that one on CD and haven’t loaded it onto the Ipod yet…..that would have been humiliating!)
Scott
P.S. (Did I just admit to liking the Weather Girls? Oh great…….THAT is the beginning of the end…..
Friday, July 7, 2006 2:02 PM CDT
OK….just a little teaser to whet your whistle……I will give you the categories that are represented on the player…….not the songs or artists……YET.
Now……..if I get ANY flack over this journal entry…….I will retaliate with a vengeance! (Probably an empty threat……but I’m treading on this ice here as it is…my music tastes are less than mainstream……I’m setting myself up for some serious ridicule.)
So….our week without Zachary is coming to an end….the prodigal son returns tomorrow…..but NOT before Rebecca and I get one more kayak fishing excursion in. We went on the morning of July, 4th and had a lot of fun. I caught a nice Sea Trout and a lousy Catfish….Rebecca caught a Redfish and the largest Snook that I have EVER seen! We were on our last baits…..just enjoying the sun and relaxing…..and her bobber went under. She tightened the line expecting something small…..and then her line started screaming off of her reel. (I had set the drag…so I knew that it was not a small fish.) I pulled the anchor up so that the kayak could get dragged around (this can help to prevent the angler from breaking off the fish)…..but the fish turned and headed towards the docks that we were fishing near. I reset the anchor….but this fish was SO strong that it dragged us with the anchor in the mud…..and made its way around the pilings. We thought that it would break off before we could see it, but Rebecca was able to coax it back out….it made a couple of more runs into the docks….and after about ten minutes of that…we finally got to see it….at first we thought it was a shark. (They DO venture up into our river so it’s not too uncommon to find them up there.) But, no….it was a massive Snook. Over three feet long….probably closer to 40”. Once it caught sight of us….it splashed on the surface….turned back towards the docks…and broke off the line on the leader. (That was probably a good thing…..the hook will rot out within a week….and I would have had a heck of a time getting that thing into the kayak without harming it.) Snook are excellent eating fish….but A). They are out of season June, July and August while they spawn…..and B). Their slot limit is 27” – 34”……so this one was too big to keep anyways. Rebecca had a blast fighting it. She tried at one point to hand me the rod…but I refused…..(I know how satisfying it is to complete the fight on your own.)
Now that I’ve got her and Zachary hooked on fishing….I need to win the lottery so I can afford a flats boat that we ALL can fish on. (Good luck with that.)
I’m sure that Zachary will have some interesting adventures that I can write about…so I will try to update over the weekend again.
Scott
P.S….Oh…yeah…that list of categories that I promised……ooops…I almost forgot.
In NO particular order:
Country
Pop
Easy Listening
Rock
Hard Rock
Rap
Show Tunes
Ballads
Classical
While those categories MAY, for the most part, seem to be harmless….the song titles will be FAR more damaging to my manly status.
P.S.S. I added a photo from vacation that shows some of what we did.....and YES...that is Zachary waterskiing!
Sunday, July 2, 2006 4:40 PM CDT
WE’RE BACK!!!!
(At least we WERE back….until this morning when Zachary took off for a week of fun at Boggy Creek Camp.)
First some clarification…..to answer Lorraine in the guestbook:
“Yes…..a clean bone marrow is an excellent thing.”
“No…..it does not mean he is in remission.”
A basic requirement of remission is NED or No Evidence of Disease.
Zachary still has disease in his lower spine. If you believe the doctors, that disease will never go away. Now on the other hand….he looks and feels great. We just got back from a family reunion in Arkansas. (Arkansas?..........you read that correctly.)
Actually…it was beautiful. We had 18 of us in a lake front house on Greer’s Ferry Lake. A big man-made lake north of Little Rock. The weather was great, we had a blast. Zachary learned how to water ski. He also had a blast tubing behind the boat. Evidently, there is NO speed fast enough for that little daredevil. He wanted to be flying along; outside of the wake…..soaring over other boats waves…..getting tossed around like a madman. I will put some photos up in the album so you can see him tubing and skiing…just give me a few days on that one.
So….he left this morning for camp. A whole week with no arguments…..no fights…..at least none here in Jensen Beach…lol.
The camp knows him well….they will keep him under wraps….we hope.
While waiting for our connection in Atlanta, I learned that among Zachary’s finer (NOT) traits…..is that he does NOT like to share. His ear buds stopped working for his Ipod. (He chews the cables and then wonders why they stop working….BIG mystery.) So I offered to buy him new ones right there on the spot…with the agreement that he eat food and NOT eat ear phone cables. He agreed. So….we get on the plane about 30 minutes after that…..and he’s NOT using the Ipod….so I reach over to listen to the 3 songs out of 240 that I can tolerate before my ears start to bleed….and GRABS it out of my hand and says that he was JUST about to listen………so I threw a major guilt trip on him about me buying him the new cable and then him not letting me listen to three lousy songs……he eventually gave in. The moral of the story is this…….Rebecca and I need a portable listening device that is ours….so WE don’t have to share with him. Usually…one of us is driving…so the other could be listening to our music. Plus…..I have a business trip in two weeks to California for a day and then Vegas for 4 days…..so today…after Zachary left…Rebecca and I ventured to a local store and bought an MP3 player that was on sale.
(That was my first mistake.)
The Ipod is expensive…but Rebecca and Zachary already know how to use it…and more importantly….how to get music ON TO IT!
We’ve spent the better part of 3 hours trying to find the songs that I want….(OK…I’ll admit that my taste in music can venture into the “one-hit-wonder” variety, but COME ON)……and then trying to figure out how to get the songs onto the little satanic device. We’ve managed to transfer enough songs over to keep me out of trouble for a while.
The moral of the story is this:
I am NOT a patient person when it comes to new technology.
I want crap to work….with ease.
I DON’T want to read thousands of pages of instructions for a device that an 8 yr. old can operate with 5 minutes of button pushing.
I want to be able to ‘click’ and ‘go’.
I am lazy.
Scott
P.S. The list of songs that I have placed on this MP3 player would surely garnish large amounts of laughter and heckling from YOU the lurker audience. So….I will contemplate whether or not to SHARE that list with you. In the mean time…..I leave it to your imaginations to try and figure out just how odd I really am.
Monday, June 19, 2006 6:37 PM CDT
Father’s Day went well. I got to go fishing again in the kayak….and once again I had success. Rebecca and Zachary got me some very nice cards and a couple of great Father’s Day gifts too.
But…..the best that I received this week came one day late.
I called the doctor’s office around noon today after not hearing back on Zachary’s bone marrow results….they found the fax from pathology……CLEAN ON BOTH SIDES!!!
So….we went a year and a half without testing….and we still have a clean bone marrow!
Needless to say…Rebecca and I are very pleased with this news.
Thank you to everyone for keeping us in your thoughts and prayers.
Scott
P.S. A special thank you to everyone that offered kind words of support to Michelle.
P.S.S. We leave for vacation on Friday….so don’t expect an update any time soon.
Saturday, June 17, 2006 8:31 AM CDT
OK…….I know some of you are anxious for an update…..so an update you will get. (That last sentence sounds better if you say it using Yoda’s voice from Star Wars.)
We never got a call from our doctors yesterday. They had said on Thursday that they would “try” to get the slides read so that we wouldn’t have to go through the weekend with no news….but I guess that didn’t happen. I’m guessing that we will hear something on Monday. Meanwhile……when we showed up Thursday morning to get Zachary accessed for his procedure, they checked his blood counts….and guess what? His ANC rebounded nicely from Monday’s low of 500 to just over 1,000! His platelets, which were already great at 271,000, jumped up to over 351,000! So we could have passed on the bone marrow test altogether, but we haven’t had one done since December of 2004. (That is over a year and half for those of you that flunked math.)
So, we went ahead and spent the day at the hospital. Sadly, our hospital STILL hasn’t figured out a way to do these procedures early in the morning so the kids don’t have to go all day without eating. All three of the other facilities where we’ve done these have a system in place that makes sure the children are done first thing in the morning. Oh well…you can’t have everything.
Because Zachary’s counts rebounded, we were able to start a round of chemo. This round will be done Tuesday, so he will have three days to recover before we travel to Arkansas for vacation. Hopefully all of this will work out as planned.
Last night Zachary slept over at a friend’s house, (he was feeling pretty good), so this morning, Rebecca and I got up at 5:30am and went kayak fishing. We were in search of a Redfish. Now….I have been fishing every weekend….honing my expert skills and finding the right spots for catching fish. Rebecca on the other hand has been spending her Saturday mornings sleeping….soundly I might add….in our bed. So I’m sure ALL of you will sympathize with me when I tell you that she caught BOTH Redfish this morning. I caught two useless Jacks. We also jumped a few Ladyfish, but the two big, fun; game fish were caught by NOT ME! It is days like this that make me question whether the stars are aligned against me.
Now….I wasn’t going to update this weekend…since I really didn’t have results to report. BUT something happened that I could NOT leave alone without writing about it. Usually, I am quite reserved with my opinions…..as you know….I almost NEVER say what is on my mind…..I keep my private thoughts….well….private……but I have decided to come out of my shell to express an opinion about this latest atrocity.
Many of you read more than one Caringbridge page. Many of you read Cam’s page. I have had a link to that page listed on our page in the past….and I have referenced their page many times. Evidently there is quite the controversy taking place on Cam’s page. An anonymous lurker posted a comment criticizing Michelle’s life choices and using the memory of Cam to hurt Michelle in the process. Now…Michelle is a big girl. (Not really….she’s like 5’ tall and weighs like 7 pounds or something)…..but she can take care of herself…….especially on days that end in ‘Y’. She responded in her journal entry quite eloquently to the initial post…..and one would think that the issue was resolved. However……(I HATE “however’s”.) …….however…..someone else read Michelle’s journal entry…..and then anonymously attacked her using the same premise. Tsk, tsk tsk.
I do not pretend to have all of the answers or to know everything. (I don’t need to pretend…..I DO have all of the answers and I DO know everything.)
Let me think of a delicate way to put this….(because I know that there is a better than average chance that Michelle’s lurker reads this page as well)…….let’s see…how can I say this without being confrontational………or harsh………I’ve got to put it in a way that conveys my thoughts without being hurtful or mean……..OK….I think I’ve got it.
LEAVE HER THE F&%# ALONE!!!!
DON’T GO AWAY ANGRY……JUST GO AWAY!!!!
IF WE WANTED YOUR OPINION……WE WOULD GIVE IT TO YOU!!!!
You are attacking a woman who just lost her son…… ARE YOU INSANE? (That was a rhetorical question….you don’t need to answer it.) Erik and Michelle are BOTH great people. We have known them since the first week that Cam was diagnosed. We traveled to NYC with them and spent a week there together getting testing. We have laughed with them….and we have cried with them………..their son had the same disease as Zachary……….now….having said ALL of that……I STILL would NEVER presume to know what is going on their heads…..or their hearts. I would NEVER presume to know what is right or wrong for EITHER of them. If you are out there lurking, it seems pretty obvious that you are closer to Erik………..Erik is a great guy…….if you are his friend, maybe there is a way for you to be there for him as a friend without eviscerating Michelle……maybe there is a way to honor the memory of Cam instead of dishonoring his memory by attacking his mother.
Did I mention that her son DIED?
Did I mention that she spent the last 4 years being a full-time caregiver for her sick son?
Did I mention that you are beyond clueless?
Did I mention that if at any time….you need our help to find the rock that you crawled out from under…..I’m sure that I can find plenty of volunteers to help you relocate that rock so that you can slither back underneath it!
Maybe you are just bored….perhaps there is a hobby that you could take up……let us see……you could always spend time down at your local pond…..shooting bb’s at the ducks……or maybe you could buy a magnifying glass and burn insects to a crisp in your yard for fun…….OR…..you could work as a pediatric hospice volunteer…telling the young dying children that they are weak and useless……….or you could work with their parents and tell them that they failed their children and that they made ALL of the wrong decisions…..and that if ONLY they had sought out your counsel in time….YOU could have given them the answers and YOU could have kept them on the path to righteousness!
Scott
P.S. I wasn’t too harsh….was I? I tried to water down my comments….really I did.
P.S.S. If you forgot where to go……www.caringbridge.org/fl/camspage
Monday, June 12, 2006 6:46 PM CDT
“The best laid plans of mice and men….”
So there we were…….planning out our summer…..and trying to give Zachary his best chance at enjoying his vacation and camp without sacrificing his treatment protocol.
Of course we got the doctors on board with the plan….and everything seemed to be going well.
Today was blood testing day……once Zachary’s counts were confirmed; he was scheduled to begin chemo tonight.
Well……..unfortunately, his counts did NOT cooperate. Zachary’s ANC is only around 500. Way too low for chemo. Dangerously low enough that he may be at risk for infection or fever if we are not careful.
So….no chemo this week.
Now the doctor wants to test Zachary’s bone marrow. Just to make sure that there isn’t a problem there with disease progression causing the low counts. Zachary’s platelets are very strong….so we’re hoping that we don’t have a problem in the marrow.
The doctor brought up a good point…….Zachary’s recent hair loss. Those cells are similar to white blood cells in that they are rapidly dividing cells that are affected by chemo in the same way. So…..it stands to reason that his ANC would crash around the same time that his hair started to fall out again. (Hopefully.)
So…tomorrow morning we will call the doctor’s office to see if they can do a bone marrow biopsy and aspiration on Thursday.
Assuming the bone marrow results are good……AND assuming his counts rebound by Monday, Zachary will restart his chemo schedule.
If for some reason they don’t rebound that quickly…then we have to reconsider putting him on an airplane next Friday to travel to Arkansas. The exposure to those germs could be WAY too risky…….a mask is an option….or driving up….(17 hours each way.)
Let us not put the cart ahead of the horse though…….first the bone marrow test….hopefully on Thursday…..and then there is always the possibility that the counts will start rising sufficiently by Monday.
Either way…..there is nothing like a little bit of excitement to spice things up in our lives eh?
This past weekend was fun. Friday night was poker night with the guys. I played with some new friends in a mini tournament and took second place. (Insert golf clap here.)
Saturday morning…after a whopping 4 hours of sleep, I got up to go kayak fishing. Zachary was NOT interested in getting up at 5:30am, so I had to go alone. I ended up catching some nice fish…including the largest sea trout that I have ever seen…..so that was fun. Saturday evening we were watching our friend’s two children…….and we played the Scene It game of Disney trivia. We played the boys against the girls….and the boys won….I don’t know how we won……Disney trivia is NOT my forte. The interesting experience we had this weekend was Zachary learning how to cut the grass. He has been begging for me to let him use the lawn mower…..so I finally gave in and let him cut the front yard grass. I have to admit that I was pretty nervous…….I know that the thing won’t run if you fall and let go of the “kill bar”, but still I couldn’t help but worry about him accidentally chopping his fingers off or something……..but he ended up doing a fine job!
Scott
Monday, June 5, 2006 8:16 PM CDT
If by chance you have been reading the guest book entries, then you will have noticed somewhat of a controversy surrounding my battle with Zachary over wearing the ski cap.
Evidently, one or two readers in particular were NOT happy with the fact that I didn’t just let Zachary get his way…..after all….he IS a cancer patient…..”Show some compassion.”
Hmmmmmm.
At this point….I would highly recommend stopping from reading any further until you have read the last 8 or 10 posts in the guest book.
Go….ahead…..the rest of us will wait.
Really…..we’ll wait…..go read them.
WE’RE not kidding…..GO and READ them….we won’t cheat and read ahead.
(Tapping our feet impatiently.)
(Tapping some more.)
OK…here we go.
I have been accused of being overly logical in the past. But I think I have to put my foot down on this one. Let us walk down logic lane and dissect the issue at hand.
A). Here in Florida it is on average….about 329 degrees on any given day.
B). Zachary has a hat collection that is unrivaled anywhere on the planet….the Smithsonian has called on many occasions and he has turned them down.
C). That collection includes many “regular” caps and bandanas.
D). The ONLY hat that I would deem inappropriate is the wool ski cap.
E). Zachary HATES to wear his hearing aids….because of how they look.
F). When he wears low hats (like ski caps), his aids whistle, so he has an excuse to remove them.
G). The point of wearing a hat at all….is to cover his bald head so people won’t stare at him.
H). WEARING A WOOL SKI CAP IN FLORIDA DURING THE SUMMER PRETTY MUCH ENSURES THAT EVERYONE WILL STARE AT HIM!!!
I). Zachary is at an age where EVERYTHING is a battle. Allowing him to win really DUMB battles like this one would only encourage him to push us on other issues.
J). The last time I checked…….they have STILL not issued us any manual instructing us on how to deal with a child that has been fighting cancer for 6 of his 12 years. We make the best decisions we can….we try our best….we move on.
I realize that by reading my satirically written journal entries you lurkers are MUCH more qualified to raise Zachary than either Rebecca or I am. After all…….you know everything and we know nothing. However…..we DO have to live with him every day. So I am going to go out on a limb here and say that you out there in lurker land….and you know who you are…..you really need to drop what you are doing, gather up a LARGE group of your friends…..and have them help you FIND A CLUE!!!
Children NEED limits. Children NEED rules. Without limits and rules you get chaos. How do I know this? Well…..five years ago…the FIRST time they told us that Zachary was going to die within a few months…..we spoiled him rotten and threw the rule book out of the window…………needless to say…we created a monster. We WILL NOT make that same mistake again. Zachary needs to feel as much like a normal child as possible. So….wearing the pants down below the butt……putting on gangster wool ski caps….so that EVERY SINGLE PERSON WILL STARE AT HIM…when he is trying to fit in and NOT be noticed….will NOT BE PERMITTED. I STILL have a problem with the shoes not being tied…..(some new thing with kids this year)…but I’ve let THAT one slide.
We HAVE spoiled Zachary to some degree with toys and games etc…..but we have also tried very hard to balance that with rules that keep him grounded and keep us SANE!
Now…I’m sure that one particular lurker out there will have something to say about all of this….after all….they know better than we do how to raise Zachary. To this….all I can say is……”I am sorry we have failed you as parents for our son.”
Scott
P.S. (I can hear keyboards smoking all over the planet after this one.)
Saturday, May 27, 2006 8:16 PM CDT
Wow…has another week passed by again? I swear it is going to be Christmas before too long……(unless The Da Vinci Code convinces everyone to eliminate that holiday because of the whole scandal thing…) Calm down…..that was just a joke. I am NOT saying that the story is true…..just entertaining. (People can be soooo touchy when it comes to their religion. I received one very hostile guest book entry in response to my last journal update…….not everyone has a sense of humor…..oh well.
So….this week was supposed to be Zachary’s last at his school. Tuesday was a field trip and Wednesday and Thursday were pretty much “saying goodbye” days. Well….Monday Zachary had an early doctor’s appointment to check his counts. Before leaving, he asked Rebecca to give him a hair cut. Over the past week or so, his hair has been falling out quite rapidly. It was covering his pillows and bed sheets. So, he asked if we could cut his hair in the style of one of his friends. Zachary called that friend and found out that his mom uses a #3 guide on a razor. So, Monday morning, Rebecca used a #3 on Zachary’s hair in an attempt to make it look presentable. Unfortunately, once the longer hairs were removed, it was even more obvious that he was missing large amounts of hair. There were gaping holes and bald spots. So, he decided that the best course of action was to shave it down with no guard…..pretty much like mine. Three or four years ago, he had NO problem with that “hair” style. Now that he is 12 years old and into girls and his image, it is a whole new ball game. So, Monday he had his check up, and for the first time in quite awhile, his counts were a little bit low. His ANC was borderline for where it needs to be to get chemo…….so…..between that, his embarrassment over his new hair do, and the fact that there were several kids at school that were sick…..we didn’t make him go on Tuesday for his field trip. Then, Wednesday and Thursday were the only days left, and we just decided to let him stay with me at work. Rebecca picked up his report card……he passed everything. Not with flying colors, but considering the fact that they had no program to compensate for all of his missed time, we are pleased. He will be entering the 7th grade next year at the public school. I wrote earlier about how his church school was closing……..it got even weirder…..if that is possible. The school was given notice that they needed to remove all of their possessions by 5pm on the last day of school….Thursday…..because the church was going to change the locks at that time. (Bizarre.)
So…..Wednesday I needed to run some errands….and Zachary was FREAKING out because he couldn’t find this one particular hat to cover his hideous head. (That was sarcasm……the truth of the matter is….he looks great bald. In fact……that last hair style that he was sporting doesn’t hold a candle to how he looks without hair.) So back to the freaking out…….he was losing his mind. I had to have another talk with him about keeping things in perspective…but he is definitely at that age where nothing we say as parents gets processed in his brain……it just passes through in one ear and out the other. After trying to leave the house with a ski cap on….(It is like 88 degrees here everyday now), I just about went through the roof with my patience. After I refused to allow the ski cap…..he really went ballistic. We argued for about half an hour while he continued to look for this one special hat. After throwing a few on the floor….and then being made to pick them up by me…..things got worse. I finally had to sit him down and explain that he was NEVER going to get the things that he has been wanting without being more responsible and more reasonable when we try to talk with him. He finally calmed down and decided to leave with NO hat. (???????) I give up. All of that arguing….all of that searching…..only to go in the exact opposite direction. We ran our errands and guess what……NO ONE stared at him….NO ONE made fun of him………WOW! Dad was right….who’d of thunk?
By Thursday….it was as if the whole “lack of hair” thing was never an issue. He left the house without any problems and never looked back.
Webster’s Dictionary defines ‘remorse’ as follows:
Re-morse (n) Deep moral regret for past misdeeds. Remorseful (adj).
Now…having defined THAT word…..most of you have heard of…..or experienced “Buyer’s Remorse.”
I am on the verge of that emotion.
One of the things that Zachary has wanted for quite some time is a cell phone. We have always had several good arguments as to why he does NOT need one. Well….now that summer has rolled around…..he will be somewhat more independent from us…..spending time with friends…..going to camp again…etc. I had already promised that he would get one for the new school year. (Not to use at school…but to have in case of emergency…..he will be riding the school bus.) So my original plan was to wait until the end of summer to get him one. In the meantime…..my cell phone sucks. The belt clip broke a few weeks ago….and the one that they gave me to replace it with sucks. The phone pops off of my belt every time that I get into a car. So, I was at the cell phone store replacing the phone of one of my employees and I had an idea. What if……what if I bought Zachary a new phone….(the one that I wanted)…..and then I had them switch the phone numbers and contact list with my current one……that way…..Zachary could have his cell phone….and I could get the new one that I wanted. The sales clerk informed me that I could do that…as long as I waited 24 hours after buying the new phone to make the switch. So….yesterday….24 hours after buying Zachary a new phone….I made the switch….and now I have a nice new phone that doesn’t fall off of my belt every time I sit down….and Zachary is in hog heaven…because he has officially entered into the 21 century. (Evidently he was the last of his age group to get one.) (I know…..I know….we’re horrible parents.)
So……the buyer’s remorse has been creeping in……but I do have to give him credit. Today he went to a movie with some friends…..(no adults for the first time). Then…they walked around the mall (no adults again for the first time)…..and kept checking in with us and letting us know where he was, who he was with, and what they were doing. Either he is growing up….or my speech about taking away the phone every time he screws up sank in.
Tomorrow we have a gathering with some close friends to watch the Indy 500. We have been doing it for several years, and it is always a fun day. Monday we may go to the beach, we’re not sure. I got up at 5:30 this morning to go kayak fishing (mainly because I’m insane)…..but I did catch two nice size redfish. I did not get my snook that I have been aiming for…..so with the season closing in a few days….I will probably have to wait until Sept. when it reopens.
Scott
Sunday, May 21, 2006 2:17 PM CDT
Almost a week since my last update….so I guess I’ll take pity on all of you lurkers and give you your weekly fix.
Zachary finished his week of chemo without any spectacular goings on……(which is a good thing.) Tomorrow begins week #2 of the round, and hopefully that trend will continue.
We’ve decided to “tweak” Zachary’s chemo plan over the next month or so to accommodate travel plans and to help give him a little bit more “quality of life” for his two vacations this summer. It may sound crazy or wildly risky to some of you, but in the long run, quality of life is everything. We have tweaked his schedule before when traveling…..giving him a two week break from chemo and then resuming with the normal schedule of two weeks on and one off. In the past it has worked well for us. This summer’s schedule was somewhat more challenging. Zachary was scheduled to be off of chemo the week before we leave for our family reunion. Normally we would have just added the extra week of down time to afford him the opportunity of not dealing with chemo while on vacation. BUT, two days after we get back from that trip, Zachary is leaving for a week of summer camp. Now, THAT camp is specifically for children with cancer, and some of the other children will be taking medicines while they are there….but, Zachary’s meds now require a special cocktail of flavor additives to alter the flavor……..and then there is the issue of how he feels and acts during the weeks he is taking chemo. So……we had originally pondered a three week break, but our one doctor agrees that it may be too risky to take that much time off. So, we have found a middle ground. Zachary will get two week off for his upcoming break after next week, then he will have his normal two weeks on…..followed by two weeks off (vacation & camp), followed by his normal schedule again.
“Why fix it if it isn’t broken?”
If that is the thought that is shooting through that tiny brain of yours, then you are not alone. We cringe internally ever time we make decisions like this. BUT, and that is definitely a HUGE ‘BUT’…….we can keep things going….not change anything…. But in the end……we have no guarantees as to where we’ll be down the road. So our goal is to maximize the quality of life without jeopardizing his treatment regimen by too much.
I think I’ve written about this enough times to do it my sleep……some of you will ‘get’ it…and some of you won’t. Oh well! I probably won’t lose too much sleep worrying about which of you understands our motives and which of you will second guess our decisions.
On an unrelated note….The Da Vinci Code came out on Friday (for those of you living in a cave.) We went to see it early in the afternoon before it sold out. Rebecca and I had read the book and loved it….we also enjoyed the movie. For those of you religious freaks out there that are actually offended by this movie……I don’t know what to say to you……..other than this: IT IS JUST A MOVIE!!! I have yet to hear of ANYONE that is changing their religion because of this story. There was a very bizarre story in our local paper the other day. One of our local columnists wrote a story titled, “Books of Shame.” She listed the following books:
The Da Vinci Code
The Exorcist
The Firm
The Celestine Prophecy
Love Story
Jonathon Livingston Seagull
Interview with the Vampire
The Thorn Birds
The Hunt for Red October
Now, I don’t know about the rest of you, but there are three books on this list that I thoroughly enjoyed! Actually that is an understatement…..three of my favorite books of all time are on this list…..they would definitely fall into my top 20. The article was picking apart these stories and basically saying that they are worthless and you should not have enjoyed them.
My reaction was this…..I was going to send the columnist an email and say something to this effect:
Dear Ms. Sauer,
Congratulations on being appointed as the new national “Minister of Deciding What is Entertaining for All of us.” Thank goodness somebody stepped up and took control of a situation that was clearly out of control. I don’t know how all of us survived for these many years without you at the helm to steer us in the right direction and to keep us on a course of mediocrity. Now that you are in control of the situation, I can sleep soundly at night knowing that we no longer need to make those tough choices about what entertains us. We have you screening everything for us so that we can avoid liking the wrong kind of story. If only your position could be expanded upon to include clothing and food, so that when we go to the mall, we are not bombarded with so many choices of outfits. And going to restaurants would be much easier if you would be allowed to reduce the menus down to just what YOU feel is good……that way we wouldn’t have to waste time trying to choose the right entrée. Perhaps we could all just wear white outfits, and drink a non-descript protein shake-like beverage that would nourish us and keep us healthy.
(After rereading what I just wrote…I am even MORE tempted to actually send that email to her……)
So lurkers……….here is something to get all wound up about. Where do you all stand on the whole Da Vinci Code issue? Did you see it? Did you not see it because of religious beliefs? If you did see it, were you offended by it? Were you able to enjoy it as a work of fiction and an interesting story? Let me hear from you in the guest book.
(Another clever way to get people to write entries.)
The other funny (or not so funny) story from this week was Zachary trying to make a toasted cheese sandwich the other day. I’m laying in bed and Rebecca was just getting home from somewhere….she walks past me and I get a whiff of something that smells like smoke……so of course the first thought that I have is that she is cheating on me with someone that smokes a LOT of cigarettes. She disappears into the bathroom…..and about ten seconds later Zachary calls me to the kitchen for some help. (Very casually calls me….not all panicky or with any urgency.) I saunter out to the kitchen and ask him what the problem is. He points to the toaster and says, “I am trying to make a toasted cheese sandwich, but the paper plate that I am cooking it on is burning.”
“REALLY?” “DO YOU THINK?” “YOU PUT PAPER IN AN OVEN AND IT BURNS?” “NO…THAT CAN’T BE…..NOT PAPER!” “SURELY THE FOLKS AT THE PAPER PLATE MAKING FACTORY HAVE FACTORED IN THE HEAT TOLERENCES OF THEIR PRODUCT SO THAT INNOCENT CHILDREN LIKE YOU CAN PUT THEM IN 400 DEGREE OVENS!”
(Lord…please help me to get through this….please help me to explain to my son that ovens are HOT, and that anything placed into them has the potential to burn, especially items that BURN in a fire…..amen.)
I removed the plate……threw it into the sink…..doused it with water……and shook my head back and forth until my neck hurt.
Please pray for me.
Scott
Monday, May 15, 2006 7:22 PM CDT
There are two types of journal entries that I write on here……..serious ones where I am passing along information about Zachary’s current condition….and light hearted ones where I am making fun of something. (Hmmm…that is not actually true…..sometimes I write about companies or issues that are bothering me……so I guess there are three types of journal entries.)
So…as I was saying….there are three types of journal entries that I write on here……serious ones where I am passing along information about Zachary’s current condition….light hearted ones where I am making fun of something….and entries where I am seriously angry about a company or issue that is bothering me. (Wait a minute….sometimes I write about multiple issues…..so would that count as yet ANOTHER type of journal entry….or is that just a combination from the previously mentioned ones?) Where was I?
OK…………..I give up.
Results are in.
Zachary’s spine is still “lighting up” about the same as it did back in November when we last tested him. This is not unexpected. The spine has been the most active area of his body with disease since day 1. The supraclavicular region, the hips, and the skull are now no longer showing signs of disease!!!
(What does this mean?)
Any reduction of disease should be celebrated vigorously. (That is rule #1 in the “How To Deal With Your Cancer Child and Testing Results” manual.) Now…having said that, “No sign of disease” in those aforementioned areas does not mean that there is no disease there. Small clusters of cells can elude detection because they lack the numbers required to “light up” an MIBG scan. Still……any improvement is a great thing! It means that something is eliminating cancer cells in his body. Is it chemo? Is it Protocel? Is it both? (We don’t really care………..but to quote the doctor…..”DO NOT CHANGE ANYTHING!). Good sound advice!
The more improvement we experience, the better chance we have at extended quality of life……it is really as simple as that. Less disease now = more time before the disease progresses.
More time now also gives us a better chance at a new therapy coming down the road in the near future…..thus allowing us the chance to switch treatments and buy more time… which could eventually lead us to a cure……..you just never know.
So….to all of you lurkers that are out there praying, throwing salt over your shoulders, avoiding stepping on cracks in the sidewalk, staying away from black cats, killing chickens………..you just keep on……keeping on…..because something is working…and we DON’T want to jinx that!
Scott
Saturday, May 13, 2006 4:56 PM CDT
You guys must think that I like to torture everyone……….we have received a few calls asking why I hadn’t posted testing results yet. Well…..I haven’t gotten them yet. The doctor told us that we will probably hear from him on Monday……so…..if that happens… I will UPDATE on Monday.
The physical examination went pretty well…..the doctor pushed on Zachary’s spine to try and duplicate the pain that he had experienced a few weeks ago….thankfully….no pain showed up. The doctor feels that Zachary probably pulled a muscle. The scan itself took about double the time that it usually takes. What should have been an hour and a half turned into a three hour ordeal. Evidently they had tried to expedite one of the scans and it had to be redone……..so we were there much longer than anticipated. Zachary was hungry, cramping, and tired….but he was a trooper and stayed still for the entire set of scans.
While we were there, Zachary asked the doctor if there were any treatments that he could switch to from the current one, (two weeks of chemo and only one week off.) Unfortunately, the answer was what I had expected…..there are no other treatments that are anywhere near as “easy” as the one we are on right now. I guess hearing it from the doctor helps Zachary cope with the hard facts. (Everything is relative…….if your children are healthy, you are probably cringing from the thought of having to give your child chemo two thirds of the time……….if your child is a relapsed Neuroblastoma patient, then you are probably looking at Zachary’s protocol and drooling with envy. It is ALL relative.)
The newest drama to enter our lives revolves around Zachary’s schooling. I have written before about the private school that he has been attending this year. Well…..he really wants to join his friends at the public middle school…….and it has become quite apparent that the private school does not have the resources to deal with (or cater to) the needs of a child like Zachary. So…we went to the middle school and met with the special needs coordinator. She was very helpful……we got a tour of the school…and we heard what we needed to hear……”they will do everything possible to help us give Zachary an education.” Meanwhile…back at the private school……we had heard that there was a possibility that the school might be closing. Yesterday’s newspaper confirmed that rumor. It is all very confusing. Evidently, the school is making money, paying for itself, and running financially smoothly……but meanwhile….the church that houses the school….is in a financial mess. The school has offered to pay rent, but for some reason…the church does not want that to happen……so the school is closing shortly after this school year ends in a few weeks. The school staff is working with another local church to try and move the program………but there are issues with the State grants……..and we just don’t know what is going to happen.
Rebecca and I are still nervous about the increased exposure to bugs and germs next year at a larger school……….but the good news is that there is a new middle school opening up in August, so a lot of the students will be transferring to that school. Hopefully that will translate into smaller class sizes. Zachary is excited about being back with his friends, so hopefully the change will be good for us.
Scott
Thursday, May 4, 2006 3:50 PM CDT
God never intended for me to become a plumber!
If you are at all curious as to how I came upon this revelation, it is quite simple. If God had intended for me to become a plumber, learn about plumbing, or in any way shape or form gain knowledge of plumbing…….then why did he inspire man to invent the Yellow Pages?
(It’s hard to argue with that kind of logic….isn’t it?)
I meant to write about this plumbing episode in my last journal entry, but I was blocking the horrific memories…….sadly….those same memories have returned……and I am convinced that the only way to expunge them from my brain is to write down the story here in a journal entry.
Zachary’s toilet has had a slow, slow internal “leak”-like noise that has been occurring for a few weeks. When I open the tank lid, where I’m sure some of you see a very logical apparatus, I see what looks like the inner workings of a nuclear bomb. More importantly, what I DON’T see……is an arrow with instructions saying, “TURN THIS KNOB TO FIX YOUR PROBLEM.” That would seem like the correct way to build such a complicated and involved appliance……BUT NOOOOOOO……they have to justify the cost of that Yellow Pages ad, so……..there you go…..they keep it complicated.
After a week or so of lifting the lid off, staring blankly at the insides…and then replacing the lid, I came to the conclusion that the “leak”-like noise was NOT going to be fixed by JUST lifting off the lid, staring at the insides, and then replacing the lid. (I’m pretty smart…….huh?) So, I decided to take that little home repair project to the next level. Now, in my defense….I HAVE replaced the black seal-like thingy on our other bathroom toilet once or twice before. THOSE memories have been pushed DEEP into the recesses of my psyche, so as not to affect my daily activities. So, I drove out to the Home Depot store and asked for a new black seal-like thingy for a toilet. The guy gave me a bag with all of the bells, whistles, washers, bolts, etc. I got all of my tools together and entered the bathroom to face my destiny. I know enough (barely) about toilets to know that the first thing you need to do is turn off the water supply, so you can drain the tank and commence your repairs. So, I reached down to the valve coming out of the wall, and UGH. (It wouldn’t budge.) Hmmmmm. Step 1 was NOT going well……and I’m guessing that having step 1 not go well does NOT bode well for steps 2, 3, 4 etc. Coming just short of ripping the skin off of my hand, I got a towel, covered the valve, and turned it off. About ½ way to being turned off, water started to shoot out around the valve. BUT, once the valve was turned off…..the spraying stopped. (I took this as a good sign. I figured that it was normal for water to shoot out while adjusting the valve.) So, I got back to my black seal-like thingy replacement job. After dismantling the one thingy, to get to the other thingy……I quickly realized that the seal that the Home Depot guy sold to me was NOT the one that I needed. He sold me the one that goes between the tank and the base. So, I got BACK in my car and drove BACK to the hardware store and bought the CORRECT black seal-like thingy. Since I had the whole thing apart, I decided to change out BOTH black seal-like thingies. Somehow I successfully changed out all of the pieces that needed to be changed out….AND rebuilt the toilet. Now all I had to do was refill the tank and check it for leaks. (I know you were probably able to read that last paragraph in about 30 seconds…..but in real time, it took about 6 days to get all of that done.) I started to turn the valve back on…..and guess what happened….water started to shoot out all over the place.
This really pissed me off.
I didn’t change ANYTHING on the valve thingy.
I was messing with the tank thingy.
If I’m clipping my toe nails, my ears shouldn’t be falling off….should they?
OK….as long as we’re agreeing on that.
Regardless of my aggravation over the leak coming from an area that I HAD NOT messed with, I could not help but recall that there had been somewhat of a leak when I had tried to turn the water valve off.
At this point I would like to have a moment of silence and ask that everyone pray with me in thanks of the Yellow Pages.
(Silence)
(More silence)
(A little bit more)
(OK…enough silence)
Rebecca got a hold of the company that does our other plumbing…(Reverse osmosis system). They called their plumber…..and had him call us. Luckily for us, he got on the phone with me before heading over and asked what the problem was. I gave him a blow by blow description of EXACTLY what I had done. When he finished giggling, he asked me to get a couple of pairs of pliers and take the portable phone into the bathroom. He instructed me on how to tighten the nut that resides directly behind the valve without turning the entire pipe. After doing this, the leak went away. Hallelujah!!!
I cleaned up the bathroom and exited quickly before anything else imploded on me. That phone call saved me $139.00…..the minimum charge for a plumbers visit.
Some of you MAY remember the debacle we had when Rebecca and Zachary decided to bring a living creature into our home. Little did they know that the wickedly evil and sinister Polka Dot Wasp Moth would attempt to inject its poisonous venom into our innocent veins while we slept peacefully. (OK….maybe I exaggerated a bit……maybe it wasn’t so poisonous….or venomous….or even a biting insect…..but trust me….the thing looked evil.)
So…..call me silly….but now maybe I’m a little bit on edge when those two decide to embrace Mother Nature.
One of Zachary’s chemo angels was kind enough to send Zachary an interesting looking plant. This plant comes in what looks like an egg shell. I guess you water this thing and then watch it grow. Now……I’m NOT paranoid……..but when this thing popped out of its shell, it had a couple of words imprinted on the head of the plant. How is this possible? I’m not saying anything…..but I’m saying this………if at ANY time, this new fangled plant looks up at me and says, “Feed me Seymour.”….I’m shooting it with my gun!
Scott
P.S. Next week is Ft. Myers….and MIBG testing. Zachary’s back has been mostly good. He has been roller blading with me and he has not complained, so I’ll take that as a good sign.
Sunday, April 30, 2006 10:26 AM CDT
*****NEW PHOTO***** *****NEW PHOTO***** *****NEW PHOTO*****
I have been hounded as of late to put a more recent photo of Zachary on the page, so if you pop on over to the photo album, you will find that the third photo is Zachary’s school picture from this year. (You will notice that school pictures were taken AFTER we negotiated the removal of the wig.)
Zachary got grounded earlier this week for the first time in quite a while. (Nothing like a little bit of parental guilt for punishing your cancer child……but the alternative is even worse…..a 12 year old that runs the household.) So….what stunt did our little bundle of joy pull to deserve our wrath? He has been asking to take his Ipod to school.... .supposedly so he could use it AFTER school while waiting for us to pick him up. The school strictly forbids kids to use portable games or listening devices during school. Rebecca told him that he did NOT need the Ipod at school, but that she would keep it in the car so he could listen on the ride home. (It’s such a long trip…..3 ½ minutes if you drive slowly.) So……fast forward to Thursday…..Zachary was not feeling well and asked to be picked up early….so I drove to his school to get him. While I was waiting for him to collect his books, I had an unrelated question for the principal. And while I was in HER office asking my question, she gave me his Ipod which had been confiscated earlier in the day. Hmmmmm. Somehow, the Ipod had magically jumped into his backpack, eluded detection………and then it had mysteriously found its way OUT of his backpack and into his ears. (Sounds like a plausible explanation……NOT.) “Solitary confinement, two weeks, bread and water only!!)
When I first questioned him about the incident, he tried the “I forgot it was a rule” line. Hmmmm…..it must suck having a dad that loves logic problems.
“So, you forgot?”
“Yeah, I forgot the rules.”
“Hmmm….OK….you have been asking for us to trust you more…..and for us to give you more freedom and responsibility…right?”
“Yes…I have.”
“OK…so I am going to give you two choices here…..sort of a second chance to reply. Did you, A). Purposely take the Ipod to school because you felt you could get away with it.? Or did you, B). Honestly forget the rule…..which would mean that we cannot give you more freedom, because you can’t handle responsibility? (Don’t you just love loaded questions that have NO good answer? “How often do you beat your wife?”
He pondered the options for a few brief moments before acknowledging that he had, A). Purposely taken the Ipod to school because he felt that he could get away with it.
Caught.
Tried.
Sentenced.
Another successful prosecution in the Finestone household.
We are doing our little part to help keep the crime rate down here in Florida.
We have yet another family that has joined our illustrious club, and here is the big surprise of the week…….they live in Port St. Lucie! Wow…what a coincidence….yet ANOTHER cancer family in Port St. Lucie……..and a brain tumor to boot……what are the odds?
I actually knew the father before the diagnosis. He just bought one of our local tackle shops, so he is a customer of mine. The previous owner knows about Zachary, so as soon as this boy was diagnosed, he told the new owner to call me and ask for help. I’ve got to tell you, speaking with someone that has just received their diagnosis…..its like traveling back in time…..seeing the pain in someone else’s eyes really sucks! The only saving grace is in knowing that you might be able to offer some tidbits of knowledge, having walked down that road yourself. But in the end, I recognize that there are emotional stages that a family cannot avoid no matter how much you try to intervene. I have offered to help them set up a Caringbridge site for their son, but he is still in the hospital recovering from the surgery to remove the brain tumor. His name is Tanner, and he was diagnosed with a medullablastoma…..he is eight years old. Once they get a site up and running, I will include the link from my journal entry so all of you can visit their guest book and let them know that we are a worldwide support network keeping them in our thoughts and prayers. (You don’t have to type that word for word, but I WILL be checking for grammar and content, so make sure you dot your ‘I’s and cross your ‘T’s.)
As far as the whole “Port St. Lucie” thing goes….I just don’t know what to say anymore about that. Our appeal was just filed with the appellate court in Atlanta; I got a copy of it yesterday. Amazing stuff…….it will be interesting to see how they respond.
Scott
Monday, April 24, 2006 7:16 PM CDT
So….shortly after writing that last journal entry, Zachary developed back pain. The timing of course couldn’t be better….we’re about two weeks away from our six month MIBG testing. (That last bit was sarcasm.)
I can’t think of too many families that haven’t had one issue or another hanging over their heads going into testing week. There always seems to be some “indicator” that plants itself firmly into your brain and tortures you for the week or so leading up to the tests.
Thankfully, the pain has since subsided. After two days of discomfort, Rebecca took Zachary in to see his oncologist. A thorough exam failed to reveal anything of consequence, and the general belief was that it was probably a pulled muscle from his new skating hobby.
He took a break from any physical activity, and shortly after that the pain was gone. So, hopefully the testing in two weeks will be fine. (I’m sure we won’t be worrying at all about it……..nah……….walk in the park.)
This past weekend was busy for us. Saturday we went ice skating. The Connor Moran Children’s Cancer Foundation had an event in WPB. Zachary had a blast. He only fell once and really started to enjoy it. I skated for a little bit……but roller blading is more my speed. After that we went straight over to a friend’s birthday party/clam bake. We hung out there for a few hours and had great food and a nice visit. After that we motored onward to an Irish Pub/Restaurant in Jupiter that was hosting the charity dinner for the Quantum House annual golf tournament. I had promised to speak briefly to the group about our experiences with Quantum House……and my business partner and I were scheduled to golf the next day with them…..so it worked out well. It ended up being a long, long day. We got home around 10:30pm.
Sunday was the golf tournament, and that was fun. That had a little putting contest before the tournament started, and the golfers had to beat Zachary on two different putts to be eligible for a prize. On the first one, he putted within about 4 inches, and only 4 guys were able to beat him. On the second one, he put it about 18 inches away, but it was a more difficult hole, and only two golfers were able to beat him, so they won prizes. After the tournament was the luncheon and raffle give away. Zachary won a drink cooler/radio for the beach.
I know I’ve mentioned this before, but we’re huge Tampa Bay Lightning hockey fans. They snuck into the playoffs in the eighth and final position, which meant they had to face the number one team in the first round. They lost the first game, but last night they played really well and beat the Ottawa Senators in Ottawa, so now they return to Tampa for the third and fourth games on home ice. We’ll be watching and rooting for them.
Since our lives are so boring and mundane, I’ve decided to take up a new battle. I am going to launch a nationwide campaign to force gasoline retailers to change their pricing so that the 9/10th’s of a cent are no longer allowed. I realize that the soaring price of gasoline is probably a much more relevant issue right now….(I think the price of gas went up $.028 while I was typing this update), but I don’t see why ANY industry should be allowed to advertise a price for a good or service that is NOT supported by our present currency system. I have never seen a 1/10th of a cent. Why should these companies be allowed to advertise a price that is not payable? If you get one exact gallon of gas, they can’t give you back the 1/10th of a cent that you are due. This needs to stop NOW!!!
I am deputizing all of you. Everyone reading this is now empowered (by me) to go out and demand that your local retailers change their signs. If any of them give you a hard time, just mention that I authorized you to demand this change….I’m sure that will be enough to get them to comply. If for some reason that doesn’t work, then I suggest picketing their property with signs. (I will support and manage this effort from the safety and comfort of my home.)
If any of you get arrested, you don’t know me……you never read this.
Every once in awhile I stumble upon a food or brand of food that captivates my taste buds to the point where I get obsessed with eating it. My most recent “discovery” was made at one of my customer’s shops. They sell convenience items along with the fishing tackle that makes up the majority of their store. About a month ago, the clerk recommended a new flavor (new to me anyways) of potato chips. I’m not usually a spicy food kind of guy, but they sounded different, so I took a chance. The brand is Deep River Snacks, and the flavor is Salt & Cracked Pepper. If this brand is available near you, take a chance and buy a bag….you might get hooked. Be warned. There are a couple of imitators out there that are not edible. They offer “Sea Salt & Cracked Pepper”, or some other version of this flavor. The Deep River Snacks brand makes the best. My customer got me a case of the large bags, and I gave some to friends and family. I have yet to find ANYONE that isn’t quite pleased with these chips. They do have a little bit of a kick, with the pepper flavor, but not so much that it becomes uncomfortable. And while pepper on a chip may seem odd at first, think about baked potatoes, you put salt and pepper on those…..don’t you?
(I must REALLY be out of journal material if I’m writing about friggin’ potato chips.)
So, anyways…….find this brand…..buy a bag……let me know what you think. And remember…this is coming from the same man that gave you the BEST crab cake recipe on the planet. (It’s not my fault if you failed to try them….the recipe is still there in the journal history if you’ve got the time to find it.)
(Potato chips…..I’ll never live this one down.)
Scott
Monday, April 17, 2006 6:16 PM CDT
Ten whole days without an update….I know….I’m a lazy, good for nothing…blah…blah blah blah blah……get over it.
No news is good news.
Thank you again to everyone that visited Cam’s web page and posted a note of encouragement for Michelle and Erik. It means a lot to me that you all care enough to step up when called upon!
Zachary has been doing pretty well with his chemo. He hasn’t had more episodes of vomiting like last time, so that is a good thing. He has asked some more questions about heaven and dying, so I have done what any other caring, loving, thoughtful, sane father would do…..I have deferred to our local pastor. “You want answers about God and heaven, we’ll call a specialist!” (OK….so I copped out a little bit on this one…but trust me, our pastor is a great guy……..and Zachary trusts him……so it’s a win-win situation. Zachary gets the answers he wants to hear…..and I get off of the hot seat.)
I’m hoping that we can get with him within the next week or so….that way Zachary will hopefully be able to put aside some of his anxieties about the unknown.
Zachary has taken up roller blading. He has also decided that while doing this activity, he enjoys holding onto a hockey stick and hitting a ball or puck around while doing it. So, I guess you could say that he has decided that he wants to play roller blade hockey. Yeah……that is pretty much it….he wants to play roller blade hockey.
Now, for the life of me….I can’t figure out where in the blessed world he got a cockamamie idea like this….I mean really…..ROLLER BLADE HOCKEY for Pete’s sake………it’s crazy……..who in their right mind plays that injury ridden sport anyways? Well…..I DID play it a LONG time ago…..but come one……..that was different……and yes……I still DO have all of my equipment…….and I still DO talk about it occasionally, but I can’t seem to figure out why HE wants to play it. I know, I know, my greatness as a player probably has inspired him to want to achieve that same level of skill and agility………..but we can’t all be as naturally gifted as me.
So, for now, we have been skating around the neighborhood while passing a ball around. We are trying to find a parking lot where it is smooth enough to play. The trick is finding a place where cars won’t be bothering you….and land owners won’t be issuing any trespass warrants against you. NOW…I’m not saying that I’ve ever had one issued against me for playing roller blade hockey on the parking garage roof over our local Park Avenue Grill about 10 years ago….I’m NOT saying that at all…….I’m just saying that it is difficult to find a secluded spot that is properly surfaced and remote enough.
Our local county park has an outdoor covered rink that can be rented…….and they even discount for non-profit organizations…..but Zachary doesn’t have enough friends that play to warrant spending the $25.00/hour to rent the place. So, we will keep searching for that perfect spot. In the meantime, we’ll keep skating around our streets on the rough roads……using what we have.
On weekends, I sometimes play Texas hold-em poker with some friends. It is a friendly game, (I can’t afford big money games). Now, Zachary knows how to play. He has played here at home for a couple of years. He used to watch it on TV with us when ESPN started showing the tournaments. So this past Saturday evening, he wanted to come with me to play against my friends. They didn’t mind, so I brought him along. We had a large crowd for the first round, eight of us. (We play tournament style….where first and second place win something……and…when you’re out…your out.) Zachary has an interesting playing style. For those of you that know the game, he is somewhat reckless, while at the same time conservative. (Figure that one out.) He played some great hands and started eliminating players. These grown men were scratching their heads trying to figure him out. One guy called Zachary’s bet and showed his flush; with a 5 high in his hand…..Zachary had the same flush….with an 8 in his hand. A couple of hands later…..Zachary stayed in a hand where an ace was on the board…..the other guy was betting big, but Zachary held strong and called all of his bets…….Zachary ended up winning that hand with pocket queens…….he kicked five of the grownups out of the game, before losing to me on an all-in hand. (Everyone at the table was convinced that he would have won the tournament had he not gotten tired and bored….and started playing a little more reckless….so he could lay down and rest.)
He is very competitive, and it shows in his game play………I guess that attribute might end up coming in handy in the future.
There is not a whole lot else going on in our world. I just emailed our doctor on the west coast of Florida that does our MIBG scan; we are trying to set that up for early in May. That will be six months since our last one. Scan time is always a bundle of fun. NOT.
Scott
Thursday, April 6, 2006 7:44 PM CDT
OK….there is SO much to write about………I usually “write” my journal entries in my mind while I’m driving on my sales route…….I have a an hour or so from 5:30am and then pockets of 20 or 30 minutes in between accounts. Then, when I get home…I just type in what I “wrote” earlier. So…there I was this morning…..writing away…trying to figure out where to begin……..usually I write in chronological order…but today, I want to start with last night’s service for Cam.
You would think that after doing this over the past few years I would learn my lesson and invest in Kleenex stock before attending a service for a child…..but I always forget. So, if you happen to own stock in that company….well……lets just say that I alone increased your sales yesterday.
The service was beautiful. Erik and Michelle are two of the most amazing people that I have ever met. I don’t know if they were “cried” out from the previous few days…or if they just have amazing poise and stamina……either way…..they did a magnificent job with the entire process. We got there around 4:30pm…about 30 minutes into the visitation process……we were able to see Erik and Michelle quickly…..because a line hadn’t formed yet. After visiting with them, we moved on to the picture boards. We were at that time pretty much in control of our emotions. Then I found the album full of Cam’s drawings. I made the mistake of opening it and flipping through the pictures. With Rebecca standing beside me……I heard her weeping while I turned the pages. Being a properly raised gentlemen, I would NEVER allow a woman to cry alone. So, I started crying. Crying in public has never been a big problem with me….I’ve done it many times….but I really didn’t need Zachary saying to me…”Hey dad, mom is crying…..oh…so are you.!” Duh!
We got through that and made our way to sit down while a line started to form. Some of our friends that we’ve met through our cancer travels started to show up, so we had lots of support. I didn’t know everyone there…but at one point I counted 8 families that had all lost a child within the past four years. (THAT number was too high by …..well….8.)
The service was very touching…there were some wonderful Cam stories, and a nice slide show that was put to music. (A bug must have flown into my eye during that part; because I found myself crying again……….never did find that bug.) Afterward we got to visit with Erik and Michelle and some of the other families for a few hours. It was good to see some of the folks that we hadn’t seen in awhile….but it sucked that we were getting together for Cam’s passing.
There are so many different mental processes at play when going through the loss of a friend’s child. I guess basic psychology would say that most people view loss on a personal level…”How does it affect me?” I’m sure that I am no different, but I do find myself “living” the loss on a personal level. I guess with Zachary‘s prognosis, it is only natural to do this…..but this time it was different. During the slide show I actually “saw” his face on the screen a few times……maybe it was the tears…..I don’t know…..I was trying to stay focused on Erik and Michelle and THEIR loss…….but seeing all of the moms that had lost children weeping from wounded hearts that will never properly heal, it was very difficult to keep my mind in “support” mode….instead of “scared$hitless” mode.
Zachary did very well at the service. He has had a tough week though. Tuesday afternoon he started throwing up, and got sick about 6 times over 2 hours. I tried a couple of different medicines with no luck…..and then finally I think he absorbed some of the Benadryl that I had given him and passed out. When he woke up two hours later, I spoke with him about what was making him sick. (Chemo hasn’t been having that kind of effect on him.) He admitted to being upset with Cam’s loss…..and his thoughts were on the upcoming Wednesday service. When I asked him what he was thinking, he responded, “I am worried about who is going to be next.” (Meaning he’s scared that he is next.) We talked a little bit about that….and then he said, “I don’t think that I will get to go where Cam is going (heaven), because of things that I have done in the past.” (That was tough to hear.) I explained that it didn’t work that way…..that God was forgiving. He didn’t have a free pass to act badly, but his past sins were not going to be held against him. (Some of that logic was wishful thinking on my part…..if MY past sins aren't going to be forgiven….then I’m in trouble.) So, we talked some more and he ended up going to bed. Late last night, right before we were heading home, Zachary asked Michelle some tough questions about Cam’s conversation with the angels and God. I could see the wheels turning in his head. It was almost as if he felt like we were selling him a bill of goods to calm him down…..but Michelle did an excellent job. She made sure Zachary knew that Cam’s conversation was real. (Zachary tried explaining it away by asking if Cam was just repeating things that Erik and Michelle had told him over the past week or so.) But Michelle was able convince him that that was NOT the case. The conversation was real.
I could see Zachary trying to resist the truth, but while we were driving home he asked about it again, and I think he was more at ease with it than he was on Tuesday.
Let’s travel back in time to Friday now.
Everyone remembers my most recent battle with Cigna and Tel-Drug. As of Thursday things seemed to be OK in the world. Our helper at Cigna had called me and assured me that things were going to be good from now on……so we of course let our guard down. About an hour before we were leaving for Boggy Creek, Rebecca decided to call Tel-Drug to make sure they had shipped Zachary’s chemo so we could start treatment on Monday. She ordered the chemo along with some other supply a week earlier. The supply had come in…the chemo had not. She got a Tel-Drug operator on the phone and I could hear her getting frustrated…..so she handed the phone over to me. According to this most recent genius at Tel-Drug, Zachary no longer had insurance coverage with Cigna. AND…they knew this, because their system TOLD them that that was the case. (OK……let’s take this slowly………according to every rep at either company that we’ve ever spoken to, the two companies are separate…not linked…not connected…..so HOW CAN THEY TELL WE DON’T HAVE COVERAGE?????)
They didn’t have an answer for this. All they would say is that they could see where we had been getting lots of medicines over the past 60 weeks from them…but that their system was telling them that Zachary didn’t have insurance anymore. (I had just spoken with Cigna the day before….you’d think they might have mentioned that if it were the case.) After politely suggesting that the rep stick her system up her &$%#*, she decided that it might be a good time to bump us up to a supervisor.
Supervisor Kelly was very nice. She had NO answers, but she WAS nice. Unfortunately, “nice” doesn’t put chemo into Zachary’s body. (Meanwhile, while all of this was going on, I had already called the Bat Phone at Cigna, trying to get a hold of our secret back door connection. I left two voice messages, but she was not calling back. Kelly meanwhile had ALSO tried the phone number that I had provided for our connection. She wasn’t having any luck either. It got to the point where there was nothing more that she could do with me on the phone. She promised to keep working on it and I gave her my cell phone number…since we were going to be on the road for a few hours…driving to Boggy Creek. About two hours later she called to let us know that she found out what the problem was. Zachary’s medicine comes from the injection dept., the operator and supervisor were looking in the “regular” part of the system….and that is why they couldn’t find his coverage. SO…..evidently…….not only does Cigna NOT communicate with Cigna Tel-Drug….but Cigna Tel-Drug doesn’t communicate with Cigna Tel-Drug injection dept.!!!!!
Am I the ONLY person on the planet that thinks this is beyond stupid?
I SAID….AM I THE ONLY PERSON ON THE PLANET THAT THINKS THIS IS BEYOND STUPID?
So Tuesday my Cigna connection called me back…apologizing for being off from work on Friday…..and apologizing for the stupidity of Tel-Drug. She too could not see where they were unable to look within their own system to see that we have coverage. She made multiple notations in his Tel-Drug file (even though their systems aren’t linked she can do that)…..and she has assured us that ANYONE looking at his file in the future will A). Not refuse to speak with us as his parents, B). See that he gets his meds from the injection dept. and transfer us there if they can’t figure out our needs.
Now…as much as I am a believer in the good intentions of mankind….I will NOT be holding my breath anytime soon. (No offense to our helper’s efforts…but COME ON.)
Boggy Creek.
Boggy Creek is great. What a wonderful way to escape from the reality that we live with every day. If you are somehow NOT familiar with this place, visit their web page at:
www.boggycreek.org
They cater to children facing life-threatening illnesses. During the winter and spring they host family weekends that are illness specific. This past weekend was obviously a cancer family weekend. They do a wonderful job of combining new families with returning families. Having been there three other times, we are used to the embarrassing tactics that they so cleverly use to get folks to come out of their shells. I am always pleasantly surprised at how they can come up with new and inventive ways to do this.
This year, they added a new one. With everyone in the gym, they had us play a game that went like this. Three children were given 30” foam “wands.” (Cut sections of swimming pool noodles.) These three children were labeled “Giants.” There mission was to “hit” anyone they could (below the knee only) as everyone was walking around the gym. (No running allowed.) Now, if you were unlucky enough to receive a tap from a giant, you had to immediately freeze in your position……then you had to take your left hand (palm facing upward)…and take your right hand….(thumb facing downward) and start tapping your thumb into your palm while screeching….”HELP ME….HELP ME….HELP ME…. HELP ME…..HELP ME…..
Now…..you were not allowed to stop this nonsense until you were properly rescued. (And if you thought that first part wasn’t embarrassing enough…wait for it…here it comes….) To be rescued, you needed two strangers to walk up to you…..one standing on each side of you…….these rescuers then needed to hold hands around you. They then needed to loudly say together (while raising their arms up and down)…”RUN FREE LITLLE GELFLING….RUN FREE LITTLE GELFLING….RUN FREE LITTLE GELFLING…..RUN FREE.” Just like that……three times with a “run free” at the end. Then….and ONLY then could you proceed to continue your stroll around the gym. Unfortunately….more often than not…while you were standing still rescuing someone…you would get tapped by one of the Giants. Either that, or you would be walking away from one giant…only to find yourself being confronted with a wave of people fleeing to avoid another giant.
I know for some of you this sounds REALLY scary…….and it was……but Zachary and I survived. (Rebecca somehow conveniently needed a restroom break when this game began……..and halfway through it….there she was with our friend Laurie….watching from the platform…..out of the action.) (What kind of wife/mother sacrifices her husband and child to vicious giants?) (I may be scarred forever…..Zachary got over it.)
That whole ordeal was traumatic, but it certainly wasn’t the scariest part of the weekend. At some point during the weekend, we realized that all of the railings on all of the walkways that we were using to get around the camp were covered in……..(please be strong for me………..this is not easy to write about.)……..(where was I?)…….(oh yeah……)…..covered in…….caterpillars! AHHHHHHHHHHHHH
Not just any caterpillars……..the precursors to the dreaded polka dot wasp moth. (I know, I know…….it was more than any one person should have to face in a lifetime…but I held my head high….I mustered up my courage….and I kept my hands off of the railings…………and I walked between Rebecca and Zachary so they were near the edges.)
Boggy Creek was great. We met some wonderful new families……we had a lot of fun with our friends Ed, Laurie, Amanda and Sidney from WPB…….it was a much needed escape.
Scott
Monday, April 3, 2006 6:51 PM CDT
Since my last update on Thursday, a lot has happened. I had yet ANOTHER run-in with Cigna/Tel-Drug that defies belief. I also have some good stories from Boggy Creek that you should enjoy.
I am asking for your patience when it comes to getting these stories. We lost another young soldier to cancer this weekend, and I would like to focus on that for this entry.
The Caringbridge web page for young Cameron is:
www.caringbridge.org/fl/camspage
We met this wonderful family about one month before Zachary relapsed in 2002. Their son had just been diagnosed with Neuroblastoma, and they were given our phone number. (We were the “go to” Neuroblastoma family at that time, because Zachary was doing so well.) About a month later, we relapsed……and we ended up spending a lot of time with this family getting treatments at our local hospital. A couple of years of ago we traveled with them to NYC in search of treatment for Zachary and Cameron.
Cameron died Sunday morning. He was 5 ½ years old.
I know that I am known more for my sarcastic tone and goofy writing style, but I have thought a lot about Cameron and his parents since he relapsed almost two years ago. Aside from the Neuroblastoma connection, these are VERY special people. In my 43 years on this Earth, I can honestly say that I have NEVER met a more pure and innocent soul than that of Cameron’s. For those of you that were fortunate enough to have known him, you are probably nodding your heads in agreement right now. His disposition throughout years of adversity was beyond inspiring.
I know that I have asked for favors from my army of lurkers before….but (there is always a ‘but’ with me), I am asking again. Please take a few moments and visit Cameron’s web page. The most recent update is not only very moving; it is one of the most thought-provoking entries that I have ever read. I would consider it a personal favor if you would take the time to post a message of hope or prayer in their guest book. You don’t need to say that you came from here……….just write a message and let them know that you are thinking of them in their time of need.
Scott
P.S. Thank you in advance for doing this.
Wednesday, March 29, 2006 5:52 PM CST
I am sorry.
I have to apologize to any of you lurkers that actually look forward to this time of year. I usually put a lot of planning and thought into an entertaining April fool’s Day story……
…but this year I have been so preoccupied by the insurance debacle that I have not had time to work on that tradition. It has truly gotten to the point where I can’t possibly come up with ANYTHING that rivals the nonsense that the insurance company keeps throwing at us. There is no prank, joke, story, or scenario that comes CLOSE to the reality of Cigna and Tel-Drug.
Today provided yet another amazing chapter in the ongoing saga. (Where to begin…where to begin?)
Let us start with the first phone call. (I suppose that the best way to write about this is to provide the actual dialog (as I remember it) so you can all just follow along.
Me: “Hello…..this is Scott.”
Attila: “Hi Mr. Finestone, this is Anne from Cigna….I promised to get back to you once I learned more about the $715.40 charge that you claimed Tel-Drug wrongly billed you for.”
(Let me pause here. If you haven’t been reading my updates…then this isn’t going to make a whole lot of sense to you. I hate to be repetitive, but you REALLY need to go back and read like the last 5 or 6 updates……..I know it gives you flashbacks to when you were given homework….and for that I am sorry…….I hated homework…..but nothing sucks more than reading a story and realizing at the end that you needed to have read the prequel to fully understand the content.)
Me: “Yes Anne…..what were you able to find out?”
Attila: “After reviewing your account from 2005 I was able to determine that Tel-Drug DID overcharge you and that you are due a refund of $715.40.”
Me: “OK….how do we make that happen?”
Attila: “Well, I have already issued a check to Tel-Drug…..they received it on 3/25/06. That check includes several other claims that were processed incorrectly. Unfortunately, when I spoke with the Tel-Drug representative, she informed me that the refund to them will NOT be posted in their system for at least two weeks.”
Me: “OK……so Tel-Drug will issue me a refund check in two weeks then…right?”
Attila: “Well………no!.......It’s not that simple. Tel-Drug informed me that they will NOT issue you a refund based on my conversation with them. They will wait for you to call them and specifically request a refund.”
Me: “OK…….I’m trying to look into the future…..and envision that phone call. When I do this….I can clearly picture the phone rep informing me that they have NO record of any Cigna check getting to them….and that they don’t know what I am talking about.”
Attila: “OK….I have thought of that already. I am going to give you the check number and amount, so you can let them know exactly what you are referencing. I am also going to give you the date of service…..so they should be able to find it easily.”
Me: “OK……good…..so I wait two weeks…..I call them up….I give them all of this data….and THEN they will issue me a refund check…..right?”
Attila: “Hmmmmm…actually it is not that simple. See…..Tel-Drug does not usually write checks to anyone…..if you had paid for the bill on your credit card, they would simply refund your card….but since you wrote an actual check…….they may try to issue the refund BACK to us (Cigna) and then have us write the check to you.”
(I’m not sure….but I think at this point in the conversation my head may have exploded. I didn’t pass out or anything….and I don’t remember seeing any blood or brain fluid anywhere…….but I’m pretty sure something in my head erupted.)
Me: “OK…….I’m a little bit slow….so lets go over this again……for me to get a refund for the money that Tel-Drug incorrectly billed me for……..you Cigna have to issue them a check…..which they then hold in their account for at least two weeks…….after which, they will write a check to you……so you can then refund me?”
Attila: “I know it sounds bizarre………..and I’m trying to find a way around this…..there is a second level at Tel-Drug where I believe I can get them to bypass the step where they issue a check to us……but I won’t know for sure for another day or two.”
Me: “A LITTLE BIZARRE? A LITTLE BIZARRE?.....Lady….it couldn’t get any more bizarre unless your two companies required me to dance naked in the street with clothes pins on my nipples before processing this refund.”
(OK….maybe I didn’t say that……but you’ve got to admit, it would have been a great impact statement.)
Attila: “Let me work some more on this….the important thing is….you will get your refund…..it just is going to take some time. Wait the two weeks….then call them and let’s see what happens after that.”
Me: “Well…..now that you mention it…..I really didn’t want to rain on your parade of good news….but there is another issue that has NOT been addressed here…and I believe it has a direct relevance on your plan.”
Attila: “What is that?”
Me: “Whenever my wife or I call Tel-Drug lately, they refuse to speak with us…because we are NOT Zachary Finestone….and he is self-insured. We have explained that he is only 12 years old and that we are both his custodial guardians….but that has not deterred them from requiring all sorts of bizarre authorizations before they will communicate with us. I can see what is going to happen….I will call them and they won’t want to speak with me.”
Attila: “That is just stupid. Here at Cigna we have a house policy that allows us to deal with custodial guardians of minor children.”
Me: “And when I call Tel-Drug…..they answer the phone……’Cigna Tel-Drug’.”
Attila: “They are a different company from us…..I have explained this before.”
Me: “I’m not saying……I’m just saying.”
Attila: “Well……I can run interference for you. When you are ready to call them, call me first….you may recall that our phone system will require that you leave me a voice mail….I will then call you back….and then we can conference call them and get through this.”
Me: “So…..let me get this straight. To get my money back…..they money that should never have left my bank account……the money that I can’t afford to be writing checks for…..the money that Tel-Drug illegally and immorally billed me for……this is what I need to do: 1). I call your voice mail and leave you a message. 2). You call me back. 3). You then get Tel-Drug on the phone. 4). Tel-Drug and you and me…attempt to get on the same page regarding the date of service, billed amount, policy procedures, company rules….and the square root of the azimuth of the sun when it is in it’s mid-summer position in the sky. 5). Tel-Drug THEN will likely inform us that they are issuing a refund to NOT ME….but you. 6). You will then have to wait for the money to get BACK to Cigna. 7). At some point you will call me again….or simply issue a refund check BACK to me. 8). I then take the check for $715.40 and attempt to get a bank to process it, since by this time…..banks will no longer be dealing with checks….the world will have gone to one currency….and checks will have become a thing of the past.”
(OK….maybe some of that sarcasm that I have become know for was left out of that diatribe…..but let me assure you…that just because I wasn’t saying those words….it doesn’t mean they weren’t flowing through my brain.)
Attila: “If you ever need to call Tel-Drug….and feel that there is going to be problem….
…..call me first and I will mediate that call for you.”
Me: “OK…..sounds like a plan.”
Now…..that call took place this afternoon around 12pm or so. As I have written before…I just can’t make this stuff up……and it gets better.
At around 3pm, my cell phone rings….and guess what…..it’s Cigna…..a different rep calling to inform me that SHE has been working on my problems. (This is like the Twilight Zone…..I SWEAR I looked around to see if I was on Candid Camera.) So, here is the transcript from THAT phone call. (For comedy purposes...I am going to call this second rep....Attila II.)
Attila II: “Hi Mr. Finestone, I am with Cigna….and we spoke before….I have been working on your problem with the overpayment and I have reviewed all of the claims from 2005. I believe that I have isolated the problem and that I have determined what has happened.”
(The instinct here to let her go on and on and on and on and on and on about this was overwhelming….but I felt a minute pang of guilt….so I let her off of the hook….or so I thought.)
Me: “Actually, I just spoke with Anne from your company……and she informed me that your company has issued a refund check to Tel-Drug and that I am just weeks away from getting a refund.”
Attila II: “I see some notes in your file….let me see if I can make heads or tails of this….give me a few moments.”
(At this juncture….I must have been hit in the head with a stupid bat a few times, because I had a sudden urge to fill the awkward silence while she was reviewing our file….I had NO idea what awkward was until I started opening my mouth.)
Me: “So…..I guess this Anne woman is some sort of elevated supervisor…or escalated supervisor for you guys……I can’t even remember how I got hooked up with her.”
Attila II: “Actually….she IS an elevated supervisor….and she was brought into this because of the answers you gave during the phone survey that you took.”
Me: (Laughing) “OH……I did sort of have some bad things to say………that guy asked me some ridiculous questions………”
Attila II: “I have not yet seen your survey.”
(Once again……..I should have quit while I was ahead…..or not behind….or whatever… but somehow I just couldn’t help myself.)
Me: “Well…..the survey guys was asking me to rate a previous call with one of your reps, and I gave the lowest marks possible…..actually I asked if I could give lower marks and he wouldn’t let me.”
Attila II: “I WILL get to see the survey….it hasn’t come down through the system yet….you see………I AM THE PHONE REP THAT THE SURVEY WAS BASED ON.”
(That sound you are hearing now is the same pin dropping that I heard at approximately 3:13pm today.)
(How is this possible? How in the world do they allow the SAME person to call me back? AND HOW IS IT NOW THAT I AM FEELING LIKE THE BAD GUY?
I AM THE BAD GUY?
WHY DO I SUDDENLY FEEL GUILTY?
THIS SUCKS!
How did this get all turned around?
I must be the dumbest person on the planet.
I mean….she opened the trap door…..she shined a light into the trap door.
She commented on how DEEP and dangerous the trap door looked.
And I leapt right through the opening and fell hard!
Me: “Well…..if it makes you feel any better……we had spoken with like 5 or 6 reps that week, and my answers were based on all of those conversations.”
Attila II: “We will be using your survey information as a learning and teaching tool for future phone calls.”
(Oh crap.)
(Oh crap crap.)
(Crap crap crap crap crap crap.)
If this state wasn’t so damn flat….I’d climb the nearest mountain and jump off.
(I……JUST……CAN’T…..MAKE……THIS…..STUFF……..UP!)
I am like a magnet for this garbage.
And I better NOT catch ANY of you laughing or giggling about any of this. You should be reading all of this nodding understandingly with a sympathetic expression FIRMLY planted on your face.
Scott
Sunday, March 26, 2006 6:37 PM CST
For those lurkers out there that only check for new updates once or twice a week, life has become more interesting lately (if that is even possible), so you may want to get caught up. I’ve updated three times this past week.
I did a quick review of my last few updates and I’ve noticed that Cigna has gotten a lot of attention. I’m thinking that Tel-Drug must be feeling left out of all of the love that I have to offer in these updates, so I am going to write about a couple of phone calls that Rebecca had with THOSE geniuses over the past week or so.
Because of all of the problems that we’ve had…..we constantly find ourselves calling these companies in an effort to sort out whatever mess they have created. The last two times Rebecca called Tel-Drug, they didn’t want to discuss Zachary’s account with her, because she wasn’t named on the account.
Hmmmmm………..(once again…I could NOT make this stuff up if I tried.)
OK…..so Rebecca does the obvious, she explains that Mr. Zachary is 12 years of age. He is a cancer patient. We are his parents. You really don’t have to be a math genius to add up to the obvious…..WE SHOULD BE ALLOWED TO MANAGE HIS ACCOUNT FOR HIM!
But wait! They have a better idea. They will discuss “limited” issues with us, but their rules require that they mail us out a special document that we must fill out….sign….get notarized……..attach fingerprints……..include a DNA sample…….add a vial of blood, and an assortment of other requirements. (I didn’t read it all of the way through…I was afraid there was going to be an anal exam.)
So at some point during the conversation, Rebecca asks for a supervisor. (Thinking that there has to be SOMEONE at the company that has two brain cells to rub together.) The lady she was speaking with evidently got offended by that request and said, “I’m just doing my job Mrs. Finestone.” So Rebecca replied, “I’m just trying to keep my son alive!”
How does this happen? I mean….I can appreciate that we are a unique case…..there aren’t many 12 year olds that have their own insurance policy……that does not fall underneath one of the parents. But COME ON. He is 12 for Pete’s sake! Where is the logic? I tried to call yesterday to speak with a supervisor about all of this….but I missed their hours of operation by about 40 minutes. So, I guess I will have to call this week.
I’m sure they are going to stick to their guns and say…..”Just take the form we’ve sent you and spend the required 189 hours completing it….and you’ll be all set.”
Whatever happens…..you can rest assured that the results of that phone call will end up here in another update.
Now onward and upward.
I wasn’t going to write about this next subject anymore…..but unfortunately there was an article in two of our local papers, and one of you lurkers read the story….and emailed me asking why I hadn’t “come clean” on the topic yet……so I will say only this.
I have withdrawn myself from the upcoming special election for the local county position. I never felt that I had a chance, but evidently one of my rivals DID. They did some digging and found something from my past that I did NOT want made public….(I am NOT accusing anyone of blackmail.) It was merely suggested that for the good of everyone involved….I might be better off NOT seeking a publicly elected office. Rather than submerge myself in further controversy (if THAT is even possible), I chose to move on and stay out of that arena.
I don’t remember whether or not I wrote about this next subject or not….(and I am FAR too lazy to go back through my journal entries to find out,) but….there is a movie that I recently rediscovered that I would highly recommend for everyone. I don’t know what made me think of this movie about two weeks ago……but I suddenly got this urge to watch it again……I was going to go out and buy it, but I could only find it online for shipping…..no local stores stocked it. I then had an idea……we have Tivo. I could do a search….and if it was coming on anytime soon……that clever device would know about it. Believe or not……it was scheduled to come on 15 minutes after I started the search. AND it was coming on an HD channel with no commercials. I got it Tivo’d, and I watched it like four times since doing that about two weeks ago. The movie is, Searching For Bobby Fisher.
Now….before you go jumping to conclusions, this is NOT a movie that is just about chess or Bobby Fisher. (I really didn’t really know anything about him when I first watched it.) This is a family drama about a little boy that is discovered as a child chess prodigy. (Based on a true story.) The actors are great. It is one of those movies where facial expressions and body language are able to convey a very moving and touching story. If you are looking for a very entertaining movie, rent it and let me know what you think. Like I said…I’ve watched it four times in recent weeks……..its just one of those movies that I can watch over and over and not get tired of.
(Maybe this will become like Oprah’s book club……people will look to me for advice on what movies to watch.) YEAH RIGHT!
Scott
Saturday, March 25, 2006 2:44 PM CST
Once again I am inspired to write another journal entry because of all of the great guest book entries! (Not really……but I figure a little positive reinforcement never hurt anyone.) (Oh crap…..I guess then by writing “not really” you will figure out that I write when I write…..and regardless of how entertained I get from your posts……sometimes I just don’t have a journal entry in me.) (I’ve got to learn to stop typing everything that goes through my mind………that is definitely going to get me into trouble one day.) (And why do I always put those thoughts into parentheses? I mean….does that REALLY tell you that it is coming from the depths of my tiny brain?) (OK….where was I?)
The Cigna drama got interesting (or sad) yesterday. You may recall that I wrote about the incredibly funny phone satisfaction survey that I took the other night after writing about how much we hate Cigna and how useless they are. Well……..at the end of that phone call the surveyor asked if I wanted to hear from Cigna regarding my dissatisfaction with their company…..I of course am a glutton for punishment, so I agreed to another phone call. Well……this lady Anne tried reaching me on Thursday. Unfortunately, I was on another phone…..didn’t recognize the number calling….so I let it go to voice mail. The phone number on my caller ID was not a phone number that could be called back. (?) (How is that possible?) I dialed the number and got a recording from the phone company informing me that the number I was dialing was not in service. (OK…how is THAT possible?) The lady can call me from that number…but I can’t call back. (Whatever.) So on Friday…..I told Rebecca that if she called back……..tell her to call my cell phone….but tell her to wait like 5 minutes….so Rebecca could call and warn me that she was calling….that way I could get off of any other call that I was on. For once….one of my plans worked out…..she called Rebecca and said that she would try my cell phone…but that if I didn’t answer…she was NOT calling back again. (Nothing like customer service.)
Anne and I hit it off like nuns in a whore house. She was NOT the warmest individual in the world…..BUT……she seemed pretty knowledgeable about Cigna and its inner workings. I went round and round with her over the semantics of how her company and Tel-Drug communicate….(or don’t communicate.)……….and she told me this.
“Zachary’s plan is NOT a good plan. On his plan YOU are responsible for paying UP FRONT all medical and drug bills…..and then YOU are responsible for submitting claims to get reimbursed.”
OK
Hmmmmmmm.
OK
My response: “Well…then how do we get treated at hospitals and doctor’s offices without them demanding payment upfront?”
Attila The Hun: “Those types of providers file the claims as a courtesy to you. They very rarely will demand up front payments.”
Me: “OK…..then how did we get from February of last year until December of last year without Tel-Drug demanding any payment…..once we reached our max out of pocket…they just took care of billing you?”
Attila: “They must have made an internal decision to take care of that for you…because of the large number of claims that you file in a year.”
Me: “I remember very clearly the conversation I had with a Cigna rep when we first started on this chemo plan over a year ago. I was complaining about how our local pharmacy (Walgreen’s) wanted us to front the payment on thousands and thousands of dollars of medicines each and every week for us to receive the chemo. Then, we were supposed to submit the claims to Cigna, the way you are describing, and wait patiently for the refund. When I explained to THAT rep that I don’t have tens of thousands of dollars to play that game, she recommended that I call Tel-Drug and set up an account for Zachary. As she explained it, Tel-Drug is owned by Cigna and they will process the claims in a manner that will take into consideration our out of pocket situation…..thus getting our medicine to us WITHOUT having to be the banker for Cigna or Tel-Drug. Using Tel-Drug was a CIGNA REP’S IDEA!!”
Attila: “That rep was wrong.”
Me: “” (I was speechless at this point.)
Attila: “As I said before….you chose a bad plan.”
Me: “I didn’t CHOOSE any plan. Zachary was on Cobra and we were forced to move to a conversion policy to avoid losing insurance altogether.”
Attila: “Well…..those conversion policies aren’t any good.”
Me: “YA THINK?”
Attila: “Is there anything else that I can help you with?”
Me: (At this point I was tempted to ask her if she would humor me by trying to shove Cigna’s insurance policy and there regulations up her A$$. But discretion is the better part of valor, so I just told her to %$#@ OFF!) Actually…..I asked for assistance in sorting out the mess revolving around the $715.40 that Tel-Drug hoodwinked out of me about a month ago.
Attila: “I can see where they may have processed some claims incorrectly…..it happens. I will review this and get Cigna to reimburse Tel-Drug so that they can reimburse you.”
Me: “Will I get back any interest for loaning them the money?” (I didn’t actually ask that question….but I can guarantee you that the thought crossed my mind.) (What I actually said was this.) “Thank you for your help….may I ask what your title is?”
Attila: “Yes….I am an elevated supervisor.”
Me: “Elevated……meaning your chair sits higher than the other supervisors?” (Once again…I didn’t say that…but it’s the thought that counts….right?) (I asked if I could keep her phone number for future problems…..and she had no problem with that. She explained that she normally handles pharmacy issues…but she is very knowledgeable about EOB’s and would be happy to help in any way possible.)
So….that was my most recent Cigna drama. I’m not saying that Cigna is out to screw over any of it’s policy holders…..but I’m pretty sure the phone reps keep a copy of “How To Thoroughly Aggravate and Totally Piss Off Any and All Callers That Might Be Trying To Do The Unthinkable……..Get Their Money’s Worth…….in Three Easy Lessons.”
Scott
Thursday, March 23, 2006 5:40 PM CST
WOW! Two whole updates in less than four days……..it’s like a bonus or something.
Zachary seems to be doing well with his chemo……….we started using FlavorX last week in place of putting the chemo into juice, and that seems to agree with him OK. It’s a lot less volume to drink….and I think the FlavorX kills the bitterness better than grape juice did.
Zachary got his mid-term report card today. He is doing pretty well in most of his classes. He missed a lot of days from being sick this last quarter….and I know that has affected his school work. But, all things considered…….I am very proud of his ability to keep up with the other children. Hopefully he will be able to attend the rest of the year, and maybe even pick up a few of the grades where he has had some trouble.
We got some rain today…..for the first time in like…..28 years or something…..I don’t know for sure….but it’s been awhile. I was kind of hoping this weather front would blow through quickly so that the weekend would be good for fishing….but its looking like the weekend is going to be too windy and rainy for that….we’ll see. Unlike the weather up North…..our skies seem to change by the minute……and storms can miss you just as easily as they hit you.
I forgot to write about my doctor’s office visit from a few weeks ago when I was sick from the flu bug. I had a check up and while I was there I mentioned that it had been quite a while since my cholesterol had been checked. The doctor instructed me to get it checked in the morning after fasting all night……for a more accurate test. Now…..the interesting thing here is……..I hadn’t gotten my cholesterol checked in over a year. The last two times that it was checked, it was about 210 or so. I remember my last doctor instructing me to stop eating eggs, milk, ice cream, cheese….you know…..all of the good foods. Well….I’ve done a pretty good job of avoiding the “culprit” foods….but come on……I am a french fry junkie……and those aren’t exactly on the healthy foods list. So, this brings us to the point where a good friend of ours (Susan G.) had been telling me for months that there is a supplement that will help reduce your cholesterol. (Oh great…another supplement story.) Yea….yea…yea….I know the whole Protocel “thing” has worked out great for us…..but come on…..NO sane person on this planet REALLY believes in those whacky supplements…..DO THEY?
So…….there I am at the local Walgreen’s buying some Red Rice Yeast pills….(What a sucker I am)…..and of course I take them religiously…..one a day….just like the bottle says……..and of course it JUST happens to be about two months before I needed to get my blood checked……so there was the test………and the results were……
Bad cholesterol = 175
(Great…..when Susan reads this….there will be NO end to the “I told you so” comments.) (I’m changing my phone number…..to avoid the embarrassment of having to tell her that she was right.)
(I learned a long time ago that ANY time you have to tell a woman that she is right and you are wrong……..only BAD things happen.)
The other issue that I forgot to write about that was bugging me a week ago or so…..is the ongoing battle with you lurkers. Now….let me preface this next section by saying that I actually got to meet a few lurkers a month or so ago…….and I guess I’ve come to grips with the fact that there are some people that just would rather read the journal and remain hidden…than to write an entry in the guest book. I’m OK with that. (Like I have a choice.) Now, having said that…………I wrote a journal entry that had three words in it. “Cigna, Sucks, & Scott.” That was IT. No other words appeared in that entry. AND YET I SOMEHOW GOT MORE GUEST BOOK ENTRIES FROM THOSE THREE WORDS THAN I DO FROM THE LONG AND ELABORATE STORIES THAT I LAY OUT FOR YOU!!!
How is that possible? If I had know that I could get that many responses by just typing in the same two words over and over again…..than I would have started to do that sooner.
(Live and learn I guess.)
Scott
Monday, March 20, 2006 8:28 PM CST
In the midst of all of my complaining and rambling I neglected to mention two milestones that we hit last week. March 15 is Rebecca and my anniversary. We have now been married for 8 years! (Cash gifts in excess of $10,000.00 will place an enormous tax burden upon us, so please limit your gifts to $9,999.99. Thank you for your cooperation.) The other anniversary was the day AFTER our wedding one…March 16 was Zachary’s diagnosis day. (That sort of took the wind out of our sails six years ago.)
Six years seems like an eternity. We have met so many wonderful families during the course of this battle, and it seems odd, but I’ve become more aware lately of the fact that most families seem to be “in and out” of this battle in a shorter amount of time. We have known some that have gone on for many more years……but the majority seems to either achieve remission and move on with their lives, or sadly they lose the battle and leave behind a family that has to pick up the pieces of their lives and find a way to go on. We continually recognize how fortunate we are to have Zachary enjoying such excellent quality of life. So there you have it……..six years……..and onward we forge.
Zachary is getting ready to start week two of his chemo regimen…….next week is his off week…..and for once timing is on our side….because next Friday we head up to Eustis, Florida to spend a weekend at Boggy Creek camp with a bunch of other cancer families.
On the brighter side of things…(for once)…..Zachary’s oncologist gave Rebecca a letter today explaining that they have negotiated a deal with our insurance (Cigna) and that they will NOT be dropping us after all. (I have thought long and hard since hearing this news about how I should write about it……and there are extenuating circumstances that are at play here………there is a story within a story…………but I am trying to keep my composure and I am trying to keep the peace…..so I will refrain from going into another one of my long stories that would surely bore everyone to death.)
(Maybe one day I’ll write about that episode……there is a sad story there to be told.)
Zachary and I went kayak fishing yesterday morning…….he out fished me. I don’t know how exactly that happened….but every time my bobber went under…I would lose my bait…….and he kept catching fish. He caught a nice Jack……we both caught a few catfish, and we both caught a nice sized Sea Trout. All in all it was a fun morning. I friend told me of a hot spot that is sort of hidden from the main road……we found it while driving yesterday….so if the weather holds up….we’ll try it next week.
Scott
Thursday, March 16, 2006 6:08 PM CST
OK……I have too much information to pass along……….so you will just have to bear with me while I sort it all out. (I don’t even know where to begin.) (I guess the beginning would be a good spot to start.)
Once again….if you have NOT read the last journal entry, then for once you are in luck……….the essence of that update went a little bit like this……”Cigna Sucks.” So, if you didn’t read that entry…..then…..now you have! I’ll admit that I was a little bit upset with that particular company when I wrote that update……(For the record…..I am still pissed off at those #$#ing butt holes.) Tel-Drug and their parent company Cigna are working together to drive me insane. I also believe that they are violating insurance laws……and I’m working to prove it! If they are not violating any laws with the state, then they are violating laws of humanity for doing business the way they are.
The bottom line is this……..we are lucky to have a relatively low maximum out of pocket each year. Once that number is met, Zachary’s benefit is 100 So, because of his expensive chemotherapies and testing, we meet that number very early on in the year. Since his chemo is two out of every three weeks, it only takes ONE week’s worth of drugs for us to meet that obligation. Tel-drug won’t ship the medicines unless they are paid for up front. So, they calculate the 20f $5,000.00 or $6,000.00 and make us pay with a credit card. Then…..in a move that I can only describe as diabolical, they don’t notify THEIR parent company Cigna that I have had to pay that money. So, in the ‘real’ world…..at that point in time…..I have met the out of pocket commitment for the year. Tel-drug then takes their good old time…..about 1-3 months to let Cigna know about the transaction. In the meantime, Zachary sees other providers (the hospital for testing) and those organizations submit their bills to Cigna. Cigna pays them a portion of the bill, informing them that we have NOT met our out of pocket obligation. (Because they didn’t talk with Tel-drug….a company they OWN.) So, the hospital then bills me for ‘my’ portion…..which I KNOW I should not have to pay. I inform them that I have met my commitment for the year….they tell me to call the insurance company….the insurance company then informs me that their system does NOT allow them to reprocess bills……..”We’ve paid what we’re going to pay on those bills.”
So….here I am in the eighth dimension trying to figure out how I got hoodwinked so easily. The rep from Cigna today told me that if I pay Tel-drug, and they hold the information from Cigna until after another provider has submitted their bill, then I am obligated to pay the other provider…and then I am tasked with trying to collect BACK from Tel-drug.
GREAT!!!
Just what I needed………..more paper work and busy work………..now I am their bank. Loaning them money so they can get by.
(That is just one of the many reasons why Cigna Sucks!)
I did like all of the guest book entries…they were great. One in particular made me laugh, so I have copied and pasted it here for all of you to enjoy.
Dear Mr. Finestone, My name is Dewley Sworen and my firm represents the Cigna Insurance Company. Your recent posting, found on the CaringBridge website, is of a litigious nature. While the music, in and of itself, seems original, the lyrics are not. We have irrefutable proof that those lyrics belong to one of Cigna's original customers. Upon presenting his first claim to Cigna, after 23 years of insurance payments, he uttered those same words to us when we denied his claim. We do not, however, have any claim on the term "Cancer Sucks" and you are free to continue to use that phrase. Should you continue to use the phrase "Cigna Sucks", well, let's just say we'll make your life miserable. Oh, wait, I've just read your insurance file...it looks like you've already got us on the miserable part. We'll think of something else. By the way, CIGNA does NOT stand for "Cheat Ignore Gyp Negate Abandon". That is just a nasty rumor. Testimonially yours, Dewley. :::::
Duke
Curran, MI USA - Tuesday, March 14, 2006 7:56 PM CST
I don’t know who Duke is….but thank you for making me laugh……that was a great journal entry.
Now…onto bigger and better news.
Zachary seems to have gotten the bug that has been going around. Luckily he has NOT gotten a fever from it yet. He only missed a few days of school from fatigue. This week he was able to go without incident, so hopefully he is over that mess.
Now….onto even BIGGER issues.
I don’t know what kind of recreational drugs some of you out there are taking…..and frankly it’s none of my business. Today, I was informed by a close friend that no less than four different people had contacted him to ask what they could do for us…..in light of the fact that Zachary is dying. Hmmmmmm…..(I must have missed the memo.) Evidently there was some confusion that arose from the television appearance that I made for the Super Jake Foundation. We Tivo’d that news broadcast, and Rebecca and I have watched it again….to see if maybe we were hallucinating the first two times we watched it……and guess what…….it ain’t us that’s been taking drugs….it’s all of YOU!
Let me clear the air officially for everyone…..so there is NO confusion.
Last year we heard about a super home show that was being held in West Palm Beach. We also heard that it was benefiting a cancer charity. We attended that event with another Neuroblastoma family that we are close with. When we arrived, we quickly learned that the charity was founded by a family that lost their son Jake to Neuroblastoma. We also learned that ALL of the money raised goes to research for finding a cure for Neuroblastoma. We bought a few things and felt very comforted by the knowledge that someone out there was working specifically on a cure for our disease. That was the last we heard about it….until about two weeks ago. One of the local groups that works with pediatric cancer families contacted us and said that the Super Jake Foundation was preparing for another event and they were looking for a local family that would be willing to share their story to help promote the event. We have ALWAYS tried to make ourselves available to the charities that do work for families that are fighting cancer. It is our little way of giving something back. And, because we are still fighting this monster six years later, we feel that we are “connected” to many of these organizations and families that are out there. We agreed to meet the organizers at one of the collection facilities that were being used for the upcoming garage sale. As luck would have it, Jake’s mother was in town for a baby shower, and she was going to be there too. We got to meet everyone, and when the news guy showed up, we did our interview. Jake’s mom talked for a little bit, I spoke for a little bit, and the woman that is in charge of the local event spoke and gave great information about the garage sale. Well…..the story that aired was not at all representative of what took place during the interview. They completely cut out Jake’s mom and the local organizer. They showed some file footage from the charity and then focused on me….talking about Zachary’s story.
I called the local woman the next day and advised her to call the TV station to ask if they could rework the piece and air it again. Our story may be compelling, but the ONLY reason we agreed to share it was to help bring awareness to the cause so they could raise money to find a cure. Getting “airtime” doesn’t do anything for our family. They needed to have the event date and address posted on the screen so people would have a better chance of remembering when it was taking place. They mentioned it in the beginning of the piece…before most people would have gotten “hooked” on the event.
Regardless…….they never said anything about Zachary dying! They mention that he has been fighting this illness for six years……and that he is still on chemo……and that we are looking for a cure…………I don’t know how all of that got transformed into him dying……..but I would hope that all of know me well enough either personally or through my updates to know that I don’t hold ANYTHING back……..I’ve done everything except post our daily bowel movements for you. (I haven’t gone yet today….but I remain hopeful that the 7pm – 9pm time period will prove to be a productive time slot.) Where was I? Oh yeah……misinformation. I don’t get it. It saddens me when folks get the wrong information……….I would hate to think that folks out there saw that promo and twisted the information around to the point where they believed that we were facing that nightmare right now. One caller told my friend that they heard that the garage sale was specifically meant to benefit US! I just don’t get it.
We’re a pretty open book here. You’ve got our email address……a lot of you have our phone number……if you hear something like that …….or believe something is going on….PICK UP THE PHONE AND CALL US! The worst that can happen is that I have to confirm the rumor….the best thing would be…..that I could dispel it!
As bad of a job as the media did on this one……I can’t blame them for the misunderstanding……..I watched it over and over again……..there just isn’t anything there to make people believe what it is they are saying happened.
So….where was I? (Cigna…..yeah…I ranted about them……..Zachary’s health………yep…..I wrote about his cold………the TV thing….OH YEAH….I know I wrote about that……what else….what else?)
There are other issues that need to be addressed….but I fear that I have gone on long enough. I will close with the ACCURATE information regarding the garage sale that will benefit the Super Jake Foundation.
On Saturday, April 1, 2006, the Super Jake Giant Garage Sale will take place at the Palm Beach County School Board Headquarters (3300 Forest Hill Blvd., WPB). The sale will begin at 8 a.m. in the Cafeteria and will include furniture, household and seasonal items, baby items, clothes, toys, collectibles, and much more. All proceeds from the sale will benefit The Super Jake Foundation.
Security Self Storage has partnered with The Super Jake Foundation and is accepting all worthy donations to be included in the sale. Please drop your items off through March 30 at any of the following Security Self Storage locations:
Jupiter – 2591 Jupiter Park Drive (near Busch Wildlife) – 561-744-3698
Lake Worth – 8135 Lake Worth Road (in front of SkateZone) – 561-357-8038
Royal Palm Beach – 10719 Southern Blvd. (beside Al Packer Ford) – 561-333-8797
Delary Beach – 189 Linton Blvd. (1 mile east of I-95) – 561-272-1550
To arrange for pick up of your items, please call Jennifer Spear at 561-744-9719 or Lisa Johnson at 561-753-9769.
If you would like to read more about this wonderful charity, please go to this address:
www.thesuperjakefoundation.com
Scott
P.S. I gotta go potty.
P.S.S. (This was added about an hour or so after I posted the entry. And...believe it or not...I can't make this crap up.)
I just got a phone call from a company that is doing a customer satisfaction survey for Cigna. (Like I said....I couldn't make this up if I tried.) This guy had me rating the phone calls with Cigna on a scale from 1 to 5...with 1 being the lower end of the scale. A couple of times during the call, I had to ask if I was allowed to go below 1. (The guy tried to stay focused, but clearly he had not run into anyone that had such bad experiences with Cigna. (Like I said....I couldn't make this up if I tried.) The call ended with the interviewer promising me that someone from Cigna would be calling to try and "fix" our problems. (I'm not holding my breath.)
Tuesday, March 14, 2006 6:53 PM CST
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Ciiiiiiiiiiiiiiiiiiiiigna Suuuuuuuuuuuuuuuuuuucks!
CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS. Cigna SUCKS! CIGNA sucks! Cigna sucks, Cigna sucks, Cigna Sucks, Cigna Sucks. CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS. Cigna Sucks!Cigna Sucks!Cigna Sucks!Cigna Sucks!Cigna Sucks!Cigna Sucks!
Cigna SUCKS! CIGNA sucks! Cigna sucks, Cigna sucks, Cigna Sucks, Cigna Sucks. CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS. Cigna Sucks!Cigna Sucks!Cigna Sucks!Cigna Sucks!Cigna Sucks!Cigna Sucks!
Ciiiiiiiiiiiiiiiiiiiiigna Suuuuuuuuuuuuuuuuuuucks!
CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS. Cigna SUCKS! CIGNA sucks! Cigna sucks, Cigna sucks, Cigna Sucks, Cigna Sucks. CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS, CIGNA SUCKS. Cigna Sucks!Cigna Sucks!Cigna Sucks!Cigna Sucks!Cigna Sucks!Cigna Sucks!
Scott
P.S. Cigna Sucks!
Sunday, March 5, 2006 7:07 PM CST
If you are reading this update and have NOT read the previous one relating to our new flying bug that has become a family member…..then I STRONGLY suggest that you STOP reading this and go back to that previous journal entry to get caught up.
(Pausing here for morons.)
Have you done your homework……have you gone back and read the previous journal entry? No? Great…..here is your second and last opportunity to do so….
(Pausing again for stubborn morons.)
And we’re back again…..OK……….I would like to send out a special thank you to Bo Mathis…(my personal hero) for quickly and accurately identifying our new winged friend. The culprit is………………The Polka Dot Wasp Moth.
Now….interestingly enough….I researched several bug web pages in search of this little monster and even looked at a page that had only moths on it…..but I never found this little bugger. Here is some interesting (I use that word loosely), information about this insect.
From: http://www.killerplants.com/renfields-garden/20031008.asp
The caterpillars are orange with long black setae or hairs. The caterpillars look dangerous, but the setae are not nettling and cannot sting. The caterpillars are gregarious; the siblings feed in groups. If not controlled, the caterpillars will strip the shrub. The plants recover, but are weakened and susceptible to diseases and other pests. Although, usually found on oleander, these caterpillars may be found devouring desert rose (Adenium spp.) or other dogbanes.
According to Heather McAuslane with the University of Florida, the adult stage is called the oleander or polka-dot wasp moth. The moth's wings are shaped like a wasp's wings; they are bluish-black with a few white polka-dots. The moth's abdomen is blue and bright red. It looks like a very dangerous wasp or hornet, but it is harmless.
Female polka-dot wasp moths do not release pheromones to attract males for mating. In the evening, a female perches on a branch and emits ultrasonic (above human hearing) signals that travel great distances. The males follow the 'song' to her location. When a male is within several meters of the female, he emits an answering ultrasonic signal. The two call back and forth until mating before dawn.
You may notice that I was wrong….(write down this date and time on that one), these bugs do NOT sting. I also found the last paragraph interesting. (Or disturbing…depending on your point of view.) That part about how they mate. The female emits ultrasonic signals…………I’ve been sleepwalking at night…and I always wake up at the front door….about to open it…….I wonder if I have been hearing these signals…..and with my cold…..my wheezing can sound like an answering ultrasonic signal……No wonder she hasn’t left our front door step.
(If anyone at this juncture even THINKS about making a joke about how my small anatomy would fit nicely with a bug’s, I will permanently BAN them from my guestbook.)
So…..back to miss Juliet out on my doorstep………Other than decimating my beautiful desert rose plants (which these little monsters are prone to doing,) I remain undecided as to what the final judgment will be on our little Polka Dot Wasp Moth.
(And for the record….I know the “expert” web page says that they don’t sting…but come on……..some goofy scientist didn’t name it a “wasp” for nothing……right?)
YOU pick it up and do a field test for me….I’ll be hiding behind the door with a shoe in one hand and a can of raid in the other.
We just got back from Tampa this afternoon……Zachary wanted to see the Lightning play a hockey game, so we asked our friends over there and we were lucky enough to have tickets provided. (A special thank you to Kasey for making all of the arrangements.)
The Lightning didn’t win the game, but Zachary and his friends had a blast. They got some more autographs and photos and got to see a couple of fights on the ice….(What more could you ask for?)
Zachary just finished another two weeks of chemo, so he is once again looking forward to his nine day break from medicines.
When we got back from our trip, we stopped over at the end of year soccer celebration that the county put on. Zachary picked up his trophy, team photo, and his special award. Zachary’s coach awarded him best all-around player. For scoring a goal….playing tough in the mid-field, and for being a terror on defense. He tried not to act too excited…but I could sense that he was proud of the certificate.
Scott
P.S. I hope our photo and web link of the bug have dispelled any doubts as to the veracity of the story. Frankly, I’m a little disappointed in all of the guest book entries over the past few weeks that have been doubting everything I write about. A few prior indiscretions around the month of April, and all of you become doubting Thomas’s. It seems as though everything from my upcoming election to a simple little bug is fair game for you to rip apart…..well…frankly I’m hurt….and a little bit insulted. If I wanted to fool you all again this year….I assure you that I would have put more thought into it…..in fact…..maybe I will come up with three stories like I did before…..and make all of you toil over them for a few weeks…trying to figure out which one is real.
Thursday, March 2, 2006 6:29 PM CST
****NEW PHOTO ON PAGE****
(Singing out of tune)……Happy Birthday dear Zachary………Happy Birthday to you!
Yes…..yesterday was Zachary’s 12th birthday. I was not in town for most of the day, so I didn’t get to write an update. Also….I have been feeling a little bit under the weather. (Enough excuses though…let’s get to the issues.)
Zachary got the present that he most wanted……roller blades. I guess this means I’ll have to dust off mine and start taking him to the YMCA for skating sessions. This weekend we are going over to a hockey game to celebrate his birthday. That is always a great time, so we should have a blast.
The battle with the insurance company has reached new highs…(or lows…depending on your viewpoint.) I could write a new journal entry everyday for the next 10 years and ONLY focus on Cigna……….and I would still only be scratching the surface when it comes to the lunacy that we have had to endure. The latest saga surrounds Tel-Drug, a division of Cigna that ships Zachary’s chemo to us. You would think that being owned by Cigna would give them fairly good access to up-to-date information regarding Cigna members…..but evidently they are the LAST ones that Cigna notifies with new information. Subsequently, we spend money with Tel-Drug……..and Cigna takes months and months to note Zachary’s file that we have met our out of pocket……so Tel-Drug asks for more money. The REALLY interesting phone call was yesterday when the Tel-Drug rep. couldn’t tell me what the $715.40 check that I sent them was being applied towards. They showed the payment in their records, but had NO idea as to what it was for. And because they couldn’t make that determination….they wanted another $1700 before they would ship Zachary’s chemo. (Sort of like blackmail……only we’re not dealing with anything serious here…..just Zachary’s well-being.)
I may have had a few minor mental lapses in phone etiquette while discussing this matter with the rep……..I’m not entirely sure, but there are a few four letter words that MAY have slipped from my lips. Regardless….the end result was that the check I sent was being used for some mysterious charge from late last year. (Without my permission.) They basically duped me into believing that I owed money for new charges this year. I had reached Zachary’s maximum out of pocket by early February of last year….and they know this……they had to issue us a refund in April….so they absolutely KNOW that we owe NOTHING for last year….and yet they have manufactured some NEW charge of $715.40 that somehow came up in November. I tried using logic with them….and explaining that Zachary gets chemo two out of every three weeks….so how in the hell could we have gotten from April until November without a charge….and then all of a sudden owe money? It just doesn’t make any sense. So now, they are opening a NEW investigation as to why they have my $715.40 and how I can get it back. (Good luck with that.)
I swear they are absolutely either…..the dumbest people on the planet…..or the most conniving, ruthless, heartless scum-sucking pigs on the planet. (Flip a coin….you decide.)
On the home front, I have had to face a new and deadly enemy. Apparently my lovely wife and adorable son are environmental freaks. (I mean lovers.) So, a couple of weeks ago they see these ‘adorable’ little caterpillars crawling all over our plants in the front yard. So, being the inquisitive souls that they are, they decided that the SMART thing to do is to capture one of the caterpillars, entrap it in a plastic tube, shove some leaves in there for food, and wait to see what kind of beautiful butterfly will come from the cocoon that will surely be made by the insect. (A reasonable plan……or NOT.) So, the first part was going smoothly, until I saw the tube lying around the house. I had to draw the line and insist that they hatch their Frankenstein experiment OUTSIDE. They moved the tube to just outside the front door……a compromise. Finally about a week ago the caterpillar made its cocoon and the waiting game began. About three days ago there was a successful hatching. Now, how many butterfly species are there in the world? I don’t know….there have to be thousands….maybe even tens of thousands….MAYBE even hundreds of thousands……heck…..we have the Monarchs down here………why couldn’t it have been one of those?
I was unaware of the hatching. I was walking out of the door when Zachary yelled out….”Hey dad, have you seen the bug that hatched from the cocoon? It’s hanging out around the front door.”
Hmmmmmm……….(did he say ‘bug’?) (He definitely did NOT say butterfly.) (Maybe that was an omission of error……..maybe he MEANT to say butterfly but just shortened it to ‘bug’.) (Either way….how bad could it be…right….I mean it was JUST a bug.)
I started to close the door……..and this is where everything went into slow motion….just like in the movies. (I feel I should explain something here before continuing…....I have mentioned before that I am NOT a huge fan of spiders…..and any flying insect than can bite or sting……I have always loved nature……I even caught a baby diamond back rattle snake when I was a kid…only to have the park ranger chop it’s head off when I brought it up in a bucket……….so I DO like nature…..just not the previously mentioned group of insects. So….back to slow motion….the door is closing and……OH…….I should also mention that I have excellent vision………if there is an ant walking across the floor….I see it…..if there is a bee within a mile of me….I spot it….and start flailing around like a maniac…………anything that breaks the continuity of a surface that I am used to seeing a certain way…..catches my eye…….so anyway……the slow motion thing is happening….the door is closing………..and out of the corner of my eye I catch sight of one of the most horrific things that I have EVER seen……..there…..on the door…..the door that my hand is on…….about 12 VERY short inches away….is the most God-awful looking black and iridescent blue winged flying, stinging (at least it looked that way) bee-like menace of an insect. Evidently….our cocoon was NOT that of a butterfly….but some FREAK of a species of a black and iridescent blue winged flying, stinging (I still believe that it can sting) bee-like menace of an insect. The other “wonderful” news is…because we “mothered” this godless creature in our HOME….and because we nurtured it on our FRONT DOOR STEP…..it has now decided that our front door…is its HOME!!!!.......This is where it feels that it BELONGS…….for the love of everything holy….it took ALL of my self control to stop from finding a large caliber firearm and blasting this thing into a million little pieces of black and blue iridescent winged flying, stinging (I’d bet big money that this creature has a stinger the size of a spear) bee-like menace of an insect. So now……..EVERY BLESSED TIME I WALK OUT OF MY HOUSE, I AM GREETED BY THIS ABOMINATION!!! On some bizarre level…I am now somewhat convinced that the ONLY thing preventing this creature from attacking me…..is the fact that my wife and son hatched it like a monster in a laboratory. I can FEEL it looking at me….like it is trying to decide whether or not I am fair game. GOD help anyone ELSE that ventures onto our doorstep……….(Although it may help keep the Jehovah Witnesses away.) I am trying to work out a story for Zachary whereas I can explain away a flat, bloody, and quite dead black and blue iridescent winged, stinging (OUCH) bee-like menace of an insect splattered on the side of the door with my 10 ½ size shoe print all over it. I guess I could say that I slipped and flew up into the air and accidentally slammed into the EXACT spot where the “lovely” little bug was perched. (I’ll have to work on that one for a bit.)
Please say a prayer for me…..I will try to stay strong for all of you out there that root for me and my daily perils.
Scott
P.S. For you doubting Thomas's, I have added a photo that Zachary took of the flying menace.
Tuesday, February 21, 2006 6:30 PM CST
Having survived the ice storm debacle in Memphis (please see previous journal entry for the entire story if you are not up to date,) we are now safely back at home. We were fortunate that the storm only lasted for one day, and by Sunday, most of the roads were very passable. Monday the temperatures had warmed up to close to 40 degrees, so there wasn’t an ice issue for the plane.
We ended up having a really great visit with my brothers and their families. Zachary loves being with his cousins, so it was definitely worth all of the chaos and stress to make the trip.
One of the more odd events that we participated in while we were in Memphis was the observing of the daily duck march at the Peabody Hotel in downtown Memphis. If you are not familiar with this oddity, (I was NOT), then you really need to travel to a city that has a Peabody hotel so you can see first hand what happens.
First of all, there were probably over 100 people that had gathered for this morning ritual. I’m not talking about 100 little kids, or a bunch of families…but a LOT of adults….WITHOUT kids. There were kids there, but they were greatly outnumbered by adults of all ages. So, there is this water fountain that sits in the middle of the lobby. On one side of the fountain there are a couple of steps that lead up to the edge, and a red carpet that runs from those steps to the elevators which are about 20 feet away. Evidently the ducks reside on the roof, and each day at 11:00am they are brought down in the elevator to the lobby. When the doors open, the five ducks waddle their way down the red carpet, up the three steps, and into the fountain. Keep in mind that there were people lined up all along the red carpet on both sides, jockeying for position to get the best view. There were also people surrounding the fountain, waiting to snap a photo of the ducks once they take the plunge. In addition to all of those folks, there were many, many more people on the upper balconies watching the entire spectacle take place. Now, the most bizarre aspect of the entire ordeal was the loud round of applause that the ducks got once the made it into the fountain. (As if they had much of a choice…with all of the people lining the sides of the red carpet…I mean if they had altered course even a little bit….one would think that they might end up in the kitchen as an entrée.) Evidently this tradition has been taking place since the early 1930’s.
Medical News:
(Oh crap….this can’t be good……..Scott just gave us a medical update in a recent journal….there must be something amiss in the wonderful world of cancer.)
As you may have guessed, there is news. There is good news and there is bad news. The good news is that medically, nothing is new with Zachary’s condition….he remains stable, pain-free, on chemo, and in his general state of limbo that we have “enjoyed” for the past year.
The bad news is the letter that we received from our doctor today. Here it is in its entirety:
URGENT!!!!!!!!!!
THIS LETTER REQUIRES YOUR IMMEDIATE ATTENTION!!!
Dear Parent/Guardian:
We are deeply saddened to inform you that Cigna Healthcare is NOT willing to negotiate a reasonable contract with our Physician Group. As of 5-1-2006 we will no longer be able to care for your child. You will need to find another Pediatric Hematologist/Oncologist to continue care for your child. Currently the closest facilities include South Ft. Lauderdale, Miami, Orlando, Gainesville, etc. You may contact your insurance for a list of names that they are contracted with.
Once you find a specialist in any one of these areas, please let us know so that we can forward your child’s records to those physicians.
Again, we deeply regret losing your child as a patient of our practice. If you should have any questions you may call us and your representative for Cigna Healthcare.
So…there it is……our doctor of 6 years is dropping us. Great……..just what we needed in our lives……..more drama. Well…..lets take a closer look at our options…..Ft. Lauderdale is about 1.5 hours away…..there is no way that Rebecca is going to drive there every week……….Miami isn’t even an option…..I’ve been down there on business…..it is a nightmare….on a good day……Orlando is about 2 hours away……..and Gainesville is almost 4 hours away. There is also NO mention of what we do if Zachary were to get a fever……will they refuse him at our local hospital…..and put him at risk by making us travel a few hours? Lunacy. Utter and complete lunacy………….I am now officially……on the war path….again…..for the umpteenth time…………wish us luck.
Scott
Saturday, February 18, 2006 9:22 AM CST
Did I forget to mention that we were traveling to Memphis to see my two brothers and their families? Oops.
Well….here we are in sunny tropical Memphis, enjoying a great family visit. All is well with the world, and we will be back in Florida Monday afternoon.
Hmmmmmmm……I REALLY hate to mislead my faithful following…………it will haunt me for seconds or even minutes……so I am going to come clean. Everything is MOSTLY well in our world.
Hmmmmm…….once again I find myself hesitating with proceeding with this entry without coming FULLY clean as to our precarious situation.
Hmmmmm…..’precarious’……(now THAT sounds bad)…..I’ll have people panicking that we are in dire need of help or something.
Hmmmmm…..OK….’precarious’ MAY have been a poor choice of a word……so let’s just say that things have gotten interesting up here in Memphis.
Let us start with the whole ‘sunny tropical’ comment from earlier…..to be perfectly honest with all of you…..I may have exaggerated a bit when I wrote ‘sunny’ and ‘tropical’. Actually it is a bit overcast here……and, once again, to be perfectly honest….it isn’t a whole lot tropical.
Actually, its somewhat on the colder side of warm…….or even on the colder side of cold…….one could even go as far as to say that it is bloody FREEZING here!!! Today the temperatures will hover in the low 20’s, and THAT is the good news! The bad news is that we are in the middle of an ice storm. (Wow….now THAT sounded bad as I was typing it…maybe I should have tried to find a silver lining to that bomb.) OK…the trees look beautiful with the glistening rays of light beaming through their ice covered branches. (Was that better?)
So….today on the news it sounds like the ‘end of days’. They are asking that you don’t drive….ANYWHERE…..that you stay indoors………..and yesterday they were reporting on the radio that you should go buy a generator….(sounds like hurricane advice)……stock up on your ammunition, prepare for the end of the world. (That last part is true…we actually heard that on the radio…..except for the end of the world part….I made that up.)
Now…….here comes the interesting part…..Memphis isn’t exactly used to dealing with ice, or snow, or a light dusting of snow…..or a threat of a flurry of one or two flakes of snow……basically…..if the word snow is mentioned in this part of the country…..these people freak out….big time!
All of what I just wrote about is the GOOD news……….(oh great….the other shoe is about to drop.) The bad news….or should I say…the potentially bad news is that we flew up on Northwest Airlines…….and if you’ve been following the news this week….they are a heartbeat away from declaring bankruptcy and closing up shop. The last report that I heard said that the union was giving them an extension until Friday, so we will hopefully be able to fly back on Monday. That is of course if they are able to deice the planes and make the Memphis airport usable again………There is some other good news…..the city does have a snow plow and deicing truck……A truck…..as in ONE truck…..as in ONE bleeding truck for the entire city………at least they’re prepared!
So…..we are enjoying the family visit…….and depending on what happens with the weather and the airline, we may get to enjoy it of a bit longer.
Zachary is enjoying his off week of chemo, so that has made traveling a whole lot easier. He is having a blast with his cousins, which makes all of the other nonsense seem trivial.
I will update again from Memphis if anything dramatic happens with our situation……if not….I will see you all again from sunny tropical Florida.
Scott
Wednesday, February 8, 2006 7:01 PM CST
Sorry about the delay in updating again……..it seems like lately I’m not getting the urge to update as often as I used to.
Zachary is doing his chemo routine with some minor bumps in the road……he has become progressively more difficult about taking his medicines. I know the flavor sucks big time, but the daily battles are wearing on us quite a bit. His new routine is to sit with the medicine in front of him for about 30 minutes while he works himself into the right state of mind to drink it down. He’ll crack his neck, do upper body twists and turns and stretches, crack his knuckles……and somehow all of that helps him prepare for the dreaded chemo.
Another week has gone by, and of course we once again find ourselves smack dab in the middle of another controversy. Unfortunately, at this time…..I am unable to elaborate as to any details surrounding this current drama. Suffice it to say that WHEN I am able to write about it, it will boil your blood and curl your hair……(If you don’t have any hair, then it will curl your toes.) I will say this………..our current drama does not surround any health issues with any of us……….but it is HUGE!
Zachary got his mid-term grades today, and they were very good. He is getting satisfactory marks in all classes, and he has shown improvement in several areas that he was having problems in last semester. It is good to see him excited about getting good grades.
Oh….I almost forgot…..to all of you Seattle fans that wrote disparaging comments about my hometown Steelers before the big game…………WE WON! And don’t try any of those cheap, “The refs gave you that game” comments. There were some bad calls during the game…….for BOTH sides……and for every argument you make about how the game would have been different, there is an equal argument to be made as to how the Steelers were robbed of some opportunities too, so SAVE IT! If you really want to point fingers, then you might want to start with the offensive coordinator for Seattle…….your team had the league MVP……Alexander scored 27 of Seattle’s 28 rushing touchdowns during the regular season…….and before the game he said, “the team is riding on my back, it is my responsibility to produce!”….WELL, the Steelers held him to under 100 yards…..and he NEVER got close to the end zone. Your MVP got SCHOOLED!!!
Having grown up in Pittsburgh and lived through the early Super Bowl years, it was exciting to see them win again after all of these years.
I want to send a special thank you out to my good friend Walter and his crew at the printing shop for donating their time and supplies to help me with signs and banners for my upcoming election try…………unfortunately, I am WAY behind the other two guys in campaign financing, so my chances are somewhere between slim and none…..but the experience is good, so I don’t plan on giving up………if I only get two votes (me and hopefully Rebecca)….that will just have to be OK. (Besides…..with all of my other battles…….I don’t know how I’ll be able to keep up with everything.)
Scott
Tuesday, January 31, 2006 6:47 PM CST
I was browsing through the guestbook entries that followed my last update regarding the insurance debacle and I happened upon an interesting entry…….here it is in its entirety:
Okay Scott, I am done!!! You need to stop!!!! All of the dips you have had to deal with from, power companies *(&%^$'s to telephone company's to lab techs. Pharmacies, did I mention Doctors, Insurance Companies and on and on and on! We need for you to stop fighting these little personal battles!!!! We need for you to run for public office.... You are way too good for Florida... So I say we need you in the White House... Imagine the U.S. of A. run by you!!!! I for one would love to imagine!.......What a wonderful world it could be!!!!
Scott for Pres!!!! He can change the world!!!!! Not just the U.S.of A.
(Madi’s evil auntie Shelley was the author.)
Hmmmmmmm…..President huh?.......President Scott?.........Mr. President Scott?...... sounds dangerously respectful…..doesn’t it?
I want to make it perfectly clear here and now….once and for all…..that I have NO intention of running for President of these United States! I have not completed any paperwork that would have my name being added to the ballot for the 2008 elections……I have not hired a PR firm or chief of staff to look into running for President…………Now, having said that……if I WERE elected to the esteemed office of President…I promise to fulfill my duties as commander and chief of this great nation!
(With all of the enemies that I’ve made with big businesses over the past six years, I don’t believe that there is enough Kevlar or Secret Service agents to protect my butt! I would have to run in a serpentine pattern every time I walked out of the White House.
BUT…..as coincidence would have it………one of my friends is very involved with local politics and informed me about three weeks ago that a seat has opened on our local county commissioners board. At the time….I thought that we would be too tied up with our trial….with the delay of (2 or 3 years), I’ve got some time now. So, I will be on the ballot for the special election that is coming up to replace the counsel member that had to retire due to personal reasons. There are only two other candidates that have announced their intentions, so unless someone else throws in their hat before the February 15tth cutoff, I will have a one in three chance of winning……statistically speaking that is. (In reality I’ll have a better chance of winning the lottery while getting hit by lightning while getting attacked by a shark…………while dodging a meteor! But………you never know……….so I will be keeping everyone updated as to how that whole process unfolds.
Zachary finished the soccer season with the three game tournament this weekend. We lost two and won one game, so we will NOT be playing in the finals or semi-finals this weekend. I have a radio interview in the morning on Saturday for the Children’s Miracle Network, and then we have an end-of-year soccer bash to attend….(I get to play in the coaches game.) I just finished shooting an interview for CMN that will air on our local TV tomorrow afternoon. They shot some footage of Zman, old photos, interview…..about an hour’s worth….all to be edited down to 2 minutes.
Other than some residual soreness from playing three games this weekend, Zachary feels pretty good. He is on chemo again and is tolerating it well.
Don’t forget to root for the Pittsburgh Steelers this weekend!
Scott
Thursday, January 26, 2006 7:37 PM CST
Webster’s New Complete Desk Reference Book defines the word ‘logic’ in the following manner…..
Log-ic (n) The science dealing with the principles of reasoning, especially of the method and validity of deductive reasoning; something that forces a decision apart from or in opposition to reason.
Ok…..now that we ALL have a clear understanding of the word; let us tackle the latest insurance debacle to thrust itself upon the Finestone clan.
Zachary has his own insurance policy. It is a conversion policy that was born out of the extended Cobra policy that he had a few years ago. Zachary's policy has a maximum out of pocket amount that……(and this is the important part)…..once it is met, the benefit is 100%.
Hmmmmm……maybe I should stop here for a moment and discuss what ‘100%’ means. I’m sure some…..or perhaps many……or perhaps all (at least the sane ones) of you would interpret 100% to mean ALL….or…..THE ENTIRE amount……..or EVERY…….certainly when I read that 100% was covered, I foolishly interpreted it that way.
Back to live action…….
So…..I’ve been getting some VERY friendly and non-confrontational letters from collection agencies regarding medical bills from 2005. Now, 2005 was an interesting year for us……(medically billing wise that is.) In 2005 we had a lot going on medically speaking very early on in January. Well………Zachary’s chemo was being billed through a division of Cigna and they were incorrectly NOT applying the chemo payments towards his out of pocket expenses. Well…after a few months of that, we were able to correct the problem…..they even refunded us about $1,000.00 when they realized that we had overpaid them.
So….fast forward to the here and now….and very kind letters…..(you realize that I am being sarcastic I hope)……that we have been receiving. I called the providers and explained that I believed that we had met our out of pocket maximum in 2005 and they had billing issues with Cigna…….they of course put the onus on me to call Cigna and figure it all out.
So….I of course made the mistake of calling Cigna and trying to sort out the mess. I went round and round with a guy……..who…..in the interest of protecting the innocent…and in the interest of maintaining a non-disparaging description of Cigna I will call Mr. Dipshit. (I was going to use Mr. Smith….but that is so stereotypical.) So, Mr. Dipshit reviews the dates in question with me and he makes the comment that he can’t determine whether or not we had met our out of pocket when the services were rendered. He goes into some long drawn out explanation surrounding how they pay bills and how they won’t go back and pay on claims that have already been processed……and after about an hour of this back and forth arguing it occurs to me……(here comes the logic,)… that REGARDLESS OF WHEN THE SERVICES OCCURRED, WE HAVE MET OUR OUT OF POCKET MAXIMUM FOR 2005. So……….it doesn’t matter what has been processed or what was processed incorrectly……WE’VE PAID OUR DUES FOR THAT YEAR. They need to live up to their end of the deal and pay the 100% coverage for us to cover these bills…….It just doesn’t matter that they were billed out of order or late or whatever…………..WE’RE DONE WITH 2005!!!!!!! GET OVER IT!!!
Mr. Dipshit didn’t like my logic. Go figure. You know the old saying….”You can lead a horse to water….but you can’t stop him from dropping a load when he’s good and ready.”
Scott
Thursday, January 19, 2006 8:06 PM CST
Tuesday and Wednesday night Rebecca, Zachary and I watched some TV, like we usually do. The thing that made those two nights unique was that while watching one particular show that was on both nights, I started to feel like blood was going to shoot out of my ears while the pressure built inside of my head until it exploded. Of course, we were watching American Idol.
Now, we have always loved this show. But for some unexplainable reason, when reeeaaaaallllllly bad singers are being shown, I can FEEL the horrible notes resonate throughout my whole body……..it is almost unwatchable at times……..seeing people on the TV trying to sing…….people that should be locked away in a padded room. I don’t know how many of you watch that show, but trust me when I tell you, if they get 10,000 folks to show up for an audition, and they only select about 19 or so to go onto Hollywood, then you can bet that of the remaining 9,981 potential contestants, there are some HORRIBLE singers!!!
Zachary’s soccer team lost on Sunday, he was still not allowed to play…….we were letting his back rest from the previous week. The pain is still gone, so we let him practice with his team last night. This Sunday is their last regular season game, and then next weekend there is a tournament that all of the teams in his league get to participate in. So he should get to play in three more games.
I am going to once again break from “protocol” here and put out a “feeler” to all of you. I know there are many, many people from all walks of life that read and follow these journal entries. I also know from the hit counter that most of you visit anonymously, which is fine……….especially in light of what I am going to write next…………..
Our lawsuit is in appeal. We remain hopeful that we will one day get our day in court. I KNOW that out there somewhere, there are several people that have intimate knowledge of what happened at that nuclear power plant. I don’t know if they personally read this page…..I don’t know if they KNOW people that read this page……..I don’t even know if they know people that know people that know people that have met people that know people that heard of people that once or twice read this page……………but someone out there knows where all of the missing documents went to…………….and someone out there knows what happened in the early 1980’s………………..and if that person reads this, or if the person that knows that person reads this……..or if the person that knows the person that knows the person that met the person that knows the person that heard of the person that once or twice read this page, then THEY need to come forward and share the information with the attorneys.
Scott
Friday, January 13, 2006 2:01 PM CST
Well…..here we are on Friday the 13th…..traditionally perceived to be an unlucky day by some…………by as most things in life go……….bad luck for one….can be good luck for another…..right?
For instance…….if you had your bicycle stolen today….you would be sad, because you lost your bike…..but the thief would be happy….for having “found” one! (OK….maybe that wasn’t the MOST socially responsible analogy that I’ve ever used……but you get the idea.)
So, there is some news that I would like to convey to everyone…but I have to be careful as to how I write about this…..so give me a second…….in the meantime……I will tell you about our latest Zachary drama.
Last Sunday Zachary had his weekly soccer game…..sadly his team lost 3 – 0. Monday morning Zachary woke up with back pain. Now, as most of you will remember….Zachary’s back pain has always been an indicator of disease progression. He has always had disease in his spine. The fact that the pain came on so quickly and severely made me think that it was soccer related…….but of course that could have been wishful thinking. Well…..his pain has slowly gotten better this week. Today was the first day that he didn’t complain too much about it….so we remain hopeful that it was just a pulled muscle. We will be watching it over the weekend to make sure that it is gone for good. (He is off of soccer playing this week until the mystery is solved.)
Now….back to our other drama.
I have written very little about our lawsuit. I have tried to be patient and let the process run its course. We were 5 days away from the beginning of the trial when in a surprise move; the judge reversed his earlier opinions and gave FP&L a verdict in their favor….without a trial. I am NOT an attorney, so don’t ask me technical questions about what happened…………I will only say this…….we sat through some of the pre-trial hearings and witnessed what appeared to be genuine anger and frustration on behalf of the judge towards FP&L and their attorneys…….especially regarding the lack of disclosure of materials and documents to our team………..and then the case got dismissed………..??????.......it appears as though WE are being punished for THEIR lack of cooperation with the court and its rulings. (Confusing huh?......join the club.)
You know how much I love analogies…..the only one that comes to mind is a football analogy. It’s as though a referee has thrown a flag for pass interference, and then NOT penalized the defensive team any yards. “Flag on the play…..#666 tackled the receiver before the ball reached him…….bad #666, bad #666……you shouldn’t have done that…………….play will continue…..no replaying the down….no yards penalized.”
I just got the call from our attorneys……..we are appealing the case. It goes to the 11th circuit (in Atlanta I believe)…..it may take an additional 3 years….give or take a year.
So far we have over 4 years “invested” in this………..so another 3 should be a walk in the park.
Zachary got his report card today…..he showed improvement in virtually all of his classes. He did not go backwards in any classes……so we are very proud of his work and achievements!
Friday the 13th………go figure!
Scott
Thursday, January 5, 2006 5:41 PM CST
GOOD VS EVIL
Ok…..this is an age-old conflict that surely dates back to at least biblical times. (You remember…God vs. the Devil.) So, why am I writing about it now? Good question!
The battle between Good and Evil….or Right and Wrong definitely weighs in when thinking about life-threatening illnesses and why these things happen…..and what would our lives be like without them.
Let me begin with an analogy……….not so much about Good vs. Evil….but more of a Good vs. Bad…..the Bad being without malice.
In school we were always taught that a bell curve can be used to evaluate a lot of situations. For those of you too old or forgetful to remember the bell curve…..picture the traditional shape of a bell, with a straight line drawn underneath it. The left and right sides of the bell are very close to the line, while the center peaks up way high away from the line. If you were giving a test to a class of 40 students, you might expect that a very small portion….say 3 or 4 students will fail miserably and be on the left side of the bell…..while a different 3 or 4 students will get perfect or near perfect scores…thus being on the far right side of the curve……leaving the vast majority of the class somewhere in the middle. So….if all 40 students were to fail miserably or to pass with flying colors…one would assume that something were out of whack. Maybe they all gave up and just guessed at their answers….or maybe the content was over their heads. (Advanced calculus for fourth graders.) Or……maybe the content was too easy (in the latter example.) (Addition for 12th graders.) All else being equal…..we as a society have come to accept that the bell curve applies to “most” situations. So, can there be good without evil (bad)? If all of the students were to always pass with the same exact grade…how would we rate them? If all students in the country were to have the same scores on all exams…..and always pass with the exact same grade point average…then how would colleges and universities make their decisions? Would those institutions then fall into a larger non-descript group where there would be no “top ten” schools? What about applying this same question to a large company? How would promotions be given? Strictly on time served? What about a new company where everyone joins at the same time. If everyone works the same hours and performs with the same degree of results…then how does a determination get made as to who gets promoted or moved up the corporate ladder?
What about crime….if all crime were eliminated……then what would make a person “bad”? Swearing?………not opening a door for a lady?.........giving someone a nasty look?......and how would we punish these offenses?....jail time?……the death penalty for spitting on the sidewalk?
Now let’s apply this logic to our lives. Can we have Good without Bad? If we all lived to our expected 78 years of age, without illness…….would we appreciate life as much? If there were no tragedies…..or cancers………would we truly appreciate the “highs” in our lives……like our child scoring a goal in soccer……..or making friends at a park….or playing a board game…..or any other of the multitude of events that we sometimes take for granted? WOULD WE “ENJOY” LIFE AS MUCH IF IT WERE NOT FOR THE “BAD” THINGS THAT HANG OVER OUR HEADS?
I don’t know.
I would love to wave a magic wand and make cancer disappear. I would love to not have any more of our precious children die from this horrible disease. I haven’t met a parent or friend out there that would disagree with either of those statements. But I also know that we’ve learned some hard lessons from this experience. I still hope that some day I will wake up and realize that it was all a bad dream, but I recognize that we have found a greater appreciation for life than we ever had before. We have become better at living in the moment and learning to value what we have here…..and now! So, can we survive without the Bad? Would Good be “Good”…without something to offset or compare it to? Once again…I don’t know. I do know that there definitely seems to be a delicate balance between these two forces that appears to teeter precariously each and every day of our lives.
Scott
P.S. Most of the good action movies that I’ve enjoyed over the years have Good Guys battling Bad Guys. Rebecca, Zachary and I are battling more than one evil right now. There is the horrific disease that fights with an undying passion using every dirty trick know to man, while it works to take away everything holy that we value in this world….and then there is also the cancer.
Monday, January 2, 2006 4:57 PM CST
HAPPY NEW YEAR!!!
I guess I have once again slacked off in my journal update duties. Sorry about that. Zachary is still feeling pretty good. He had a bit of a cold that had us nervous, but luckily he never developed a fever with it, so we were able to avoid another holiday in the hospital.
The big news in our lives is the progress that is being made in our civil law suit. Our trial is slated to begin one week from today on Monday, January 9, 2006 in Federal Court in Ft. Lauderdale, Florida. The proceedings are open to the public, so if you are in the area and desire to hear massive amounts of arguing and name calling………(by the attorneys), then feel free to join us. There are NO cell phones or recording devices allowed in the building, so if you are one of those folks that can’t breathe without their cell phone attached to them……then I suggest avoiding this setting.
Rebecca, Zachary and I were in the court room about two weeks ago to watch some of the preliminary hearings. I wish I could convey to everyone some of the dialog, but I don’t want to be accused of inflaming an already white-hot issue. I will offer up this analogy that came to mind while I was listening to the defense try to “explain” themselves:
Let’s say that a man….we’ll call him ‘John Smith’, is accused of embezzling large quantities of money from a big company between the years of 1990 and 1992. While trying to offer up a plausible defense, the following statement is made by the defense attorney……
“Mr. Smith is accused of embezzling money between 1990 and 1992….well your honor, the company records clearly show that from 1980 until 1989…..and from 1993 until 2005, Mr. Smith did NOTHING wrong…..so therefore, he MUST not have done anything wrong in the three years that are in question.”
Judge: “Where are the records for the three years in question?”
Attorney: “Well….um…….we don’t have those records.”
Judge: “Why not? Isn’t true that there are Federal Laws that mandate that Mr. Smith retain the relevant records for a WHOLE LOT OF YEARS?”
Attorney: “Yes sir…..the records were destroyed…I mean burned….I mean….shredded…I mean lost….yes…..they were lost.”
(At this point our fictitious Judge either sneezed or said “Bullshit.”…..I couldn’t quite make out the sound.)
Hopefully this completely fictitious and totally unrelated analogy gives you SOME insight into how we felt while watching our drama unfold.
I’m guessing that there will be some interest from the media with this case…so you may be able to follow the shenanigans via your local news paper. I don’t plan on writing about this much…I’ll leave it to the experts to tell the story.
Scott
P.S. (This was written one day after the above journal entry was posted.)
As of today the trial is postponed. (Again). I may know more by the weekend.........and I may not know anything...........such is life in Federal Court.
Sunday, December 25, 2005 9:40 AM CST
Tis the season……
I have been pondering a holiday journal entry for quite some time. I didn’t want to burden everyone with the most recent serious decision that has been thrust upon me. I realize that many of you are strong willed and have the ability to stand tall when tough subjects are dropped into your laps, so I am going to rely on my faith in mankind….and share with EVERYONE this new dilemma.
Is it ok to say Merry Christmas….or do I HAVE to say Happy Holidays? (So as not to offend anyone?)
(That was it……..I was just curious.)
The battle that is raging in this country over that particular topic is way too representative of our societal divide that we seem to be creating over EVERY SINGLE TOPIC that comes down the river. Did I miss something? Don’t we live in world full of color and shades and variety? How is it that everything has to be black or white? All or nothing? There doesn’t seem to be ANY middle ground anymore. Tolerance seems to have vanished altogether.
Ok….enough ranting about that stuff……….I DO have a serious subject to discuss.
DEAL……OR NO DEAL?
Have any of you watched this show? I’ll admit that we are somewhat of a TV junkie family. So, of course when a new show comes on…..we HAVE to try it out for size.
For those of you smart enough NOT to be slaves to your TV sets…..I am referring to a new game show. The basic principal is this. There are 26 models on stage. Each has a brief case with a hidden dollar amount inside. Each amount is unique, and ranges from $.01 to $1,000,000.00. The largest prizes go from $1,000,000.00, to $750,000.00, to $500,000.00 to $400,000.00 to $300,000.00, to $200,000.00 to $100,000.00, to $75,000.00 to $50,000.00. Half of the 26 prizes are for $750.00 or less. So, if you watch game shows a lot….then you realize that most folks want to walk away with $50,000.00 or more.
When the show begins…you get to select one brief case that will be “yours.” You then have to eliminate 6 from the remaining 25. As they are eliminated…the models open them to reveal what dollar amount resided within…..that amount is then marked off on the big board to help you keep track of the remaining prizes. The object being…..eliminate the lower amounts….and increase your chances of a bigger payoff. After you have gotten rid of six……the “banker” calls the host of the show to make you a cash offer on your case. This offer is based on probabilities that are directly linked to the dollar amounts on the board. (Supposedly the producers don’t know the contents of the cases either.) So….if you have eliminated a lot of smaller amounts…then the offer will be larger….and if you eliminated larger amounts….then vice versa. The first offer is usually about $9,000.00. You then decide….Deal or No Deal. If you choose Deal…then you walk away with the money. If you choose No Deal, then you have to eliminate five more cases and wait for your next offer. After that round…it goes to four cases….then three…then two….then the remaining rounds are one case at a time. So, if an individual has ANY basic math skills….they can roughly figure out the risk/reward ratio that applies for any given round. (At least that is what I scream at the TV as the idiots keep making the wrong decisions over and over and over and over again.)
OK….I’m not saying that I’m a genius or anything…(we all know that I am…no sense in me rubbing it in everyone’s faces,)…..but these people will risk large offers of money, to try and increase their position by small margins…….it just doesn’t make sense. If you want to try the game for fun…you can play it at NBC.com……just click on the Deal or No Deal button….and it will guide you through……………my blood pressure can’t handle watching too many more episodes of that show…….I give up.
Zachary stayed up late last night reading his Harry Potter book….so he didn’t wake up until about 9:30am this morning….(officially the LAST child in North America to wake up on Christmas morning to open presents.) Zachary thoroughly enjoyed all of his gifts. Once again we find ourselves to be very fortunate to have so many caring people that are generous to our family.
I hope everyone enjoys the Christmaka Hannamas season……………and we will all hope and pray that 2006 is a healthy and happy year for everyone that is in this battle with us.
Scott
Saturday, December 17, 2005 7:20 PM CST
Ok….its been 12 days since I last updated…..but I’ve got a REALLY good excuse this time. Remember that last story about the debacle with the cell phone company? Well…I’ve been on hold this entire time….waiting for a supervisor to help straighten out this mess!
Ok…maybe I exaggerated a little bit.
Zachary has been doing fairly well. He is happy to have two weeks off from school. (What child wouldn’t?) Because of the hurricanes, we have two makeup soccer games this weekend. Today’s was exciting. The game was scoreless going into halftime. When they started up the second half….we scored three goals in about 1 or 2 minutes….literally. The first three possessions our guys went right in on them and scored. Later in the game the score was 4 – 1 and Zachary was playing forward on the left wing. I kept yelling to him to push forward so he could get a scoring chance…..he listened. Shortly after that he moved in around a couple of players and took a neat little shot that curved in to the far post. His first goal of the season!
Tomorrow’s game could prove to be a bit more of a challenge. We are facing the best team in the league….and we will be at least 3 players short….including our best scorer…..who had three goals today. I’m sure we will give it our best shot though.
This afternoon I took Zachary and a friend of his to see the new King Kong movie. WOW!!! Amazing effects!!! A bit lengthy….over three hours….but a great movie.
I will leave you all with a request. I’m sure most of you will remember our good friends the Griffins…..they lost their son Jake in April of last year…….well Susan hasn’t updated the web page since then. She said that she didn’t have any good news to report…and she was waiting for something good to convey to everyone. Well……please go and check out their page…..there is good news now!
www.caringbridge.org/page/jakegriffin
Thank you,
Scott
Monday, December 5, 2005 7:39 PM CST
I wish the news from this weekend’s soccer match was good….unfortunately our team did not do so well. We lost 6 or 7 to 1……I lost track after the first few. We did so many things wrong……it pains me to think about it. I imagine that Wednesday night’s practice will be interesting.
Zachary still feels pretty good….he has had some stomach pain that I think he got from pulling a muscle. It seems to be getting better, so I’m not too worried about it.
For those of you that remember the old “Who’s on first?” comedy routine, this next story might amuse you. I will warn you in advance that if you suffer from anxiety, high blood pressure, or any other hypertension-like illness, that you do NOT try to repeat any of the things that I have done. On the other hand, if you have low blood pressure or are just lacking in excitement, you might want to contact the company mentioned below to kick start your metabolism.
Sprint recently bought out Nextel.
This was in all of the papers.
It even was mentioned on TV.
A giant bought out of monster.
Great things will come to all.
The world will be a better place.
(I wouldn’t put too much credence in those previous comments.)
(But this is just me talking…..what do I know?)
I used to have 6 phone lines with Nextel for my business. I believe I have written in previous journal entries about how frustrating they were to deal with. In my travels, I would constantly be without coverage…..which would put me out of touch with Rebecca and Zachary….which would drive me up a $#%^&@ wall!
So, about 2 years ago we switched to Verizon. But. (There is always a ‘but.’) I kept the Nextel account open because we had one person that was on our account that wanted to keep her line active with them. Since I didn’t really have to deal with them anymore…it seemed like an easy enough arrangement……they bill me…….we bill her………I don’t have to talk to them anymore. Then Sprint went and bought them out.
Now, our bills all say “Sprint” on them. The contact phone number says, “Call Sprint – 1-800-whatever. So, our friend decided that the plans with Sprint are much more affordable than Nextel, and that she wanted to switch. Sprint informed her that only a company owner was allowed to make those decisions………..in other words……I was being thrown back into the game. (Without a helmet or cup for protection….I might add.)
[This is where the “Who’s on first?” thing comes into play.]
I called the phone number on my bill that says, “Contact Sprint.”
They answered, “Nextel…..how may I help you?”
Hmmmm……I could see bad things were ahead of me.
I calmly explained the situation….I had one phone number left on the account, and I wanted to switch it to a Sprint line…….BUY a new phone….ADD time to the contract.
After wasting large amounts of oxygen….she informed me that I needed to call Sprint. She was with Nextel. (Why did my bill say “Call Sprint.”?) Who knows…..”Call Sprint, here is the number,” she said.
So I called the number…waited on hold….again……and explained my needs to the Sprint person….again…….and after wasting more oxygen I was informed that I needed to speak with the business side of Sprint. “Here is the phone number in case you get disconnected…I’ll transfer you.”
I got disconnected.
Ahhhhhhh….but she gave me the phone number.
I called the number.
I waited on hold again.
I explained our request…..again.
….and the answer was……….
“You need to call Nextel….they can do that for you.”
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
(I think I actually said that.)
So………I started at point A….was sent to point B….and then to C….only to be sent back to A.
I wasn’t biting on that one…..I objected on the grounds of utter stupidity. She agreed that something was amiss and said she would transfer me to the business side of Sprint.
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
“You ARE the business side of Sprint…..I have your phone number right in front of me.”
“Oh……ok….well…let me transfer you to someone that can fix this.”
More waiting.
More waiting.
A little bit more waiting.
A lot more waiting.
Insane amounts of waiting.
A new “helper.”
“How may I help you?”
I explained the problem….again…but this time they took a new approach…….they tried to confuse me with a reverse Vulcan logic quagmire. I was at the point where I was trying to order the new cell phone that our friend wanted to get….and this is EXACTLY what the phone bimbo said to me:
“You can't get a phone until you have a phone.”
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
So I said, “HOW IS THAT ENGLISH? SPEAK ENGLISH TO ME.”
And her reply was……”Sir…you cannot get a new phone until you have a phone.”
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
So I said…..”PLEASE USE SMALL WORDS AND SPEAK VERY SLOWLY. AND EXPLAIN TO ME HOW THAT MAKE SENSE.”
“Sir…..until you have a Sprint account, you cannot order a phone.”
“Oh….I can see where you could confuse the words, “phone” with “account”…I mean they are identical…except for the fact that all of the letters are different and they sound nothing alike!”
Once we got past THAT debacle……….I told her that I would be happy to set up a new account……..and that is when we got disconnected….again.
About an hour later my friend called me on my cell phone and she had the Sprint rep on the phone at the same time…so we could work things out. The rep explained that we needed to open a Sprint account for the business to make things work. “Fine…..lets rock and roll.”
“Ok sir…..we’ll need a credit card from you to cover the $5.00 fee for this transaction.”
Silence.
More silence.
Finally my friend spoke up and said that she would be happy to pay the $5.00 fee on her credit card.
“I’m sorry sir………we can only accept a credit card that has the same billing address as the cell phone account.”
(I can see where this makes sense….I mean…….$5.00 charged on some credit cards are different than $5.00 charged on other credit cards……….oh wait…..no they’re not!)
IDIOT
“You have GOT to be kidding me. You want our money…but only if you can get it a certain way?”
“I’m sorry sir…that is the policy.”
“Why can’t you just add it to my bill…..I’ve paid thousands of dollars over the years to you guys…and NOW all of a sudden you want a credit card….for FIVE DOLLARS?”
“You paid Nextel that money….we’re Sprint.”
“YOU BOUGHT THEM…..YOU’RE THE SAME IDIOTS NOW………RIGHT?”
(I think maybe in retrospect that using words like idiot and moron can be counter productive…….I’ve got to work on my people skills.)
I don’t like to give credit card info over the cell phone…so I promised to call back when I was at a land line.
Over the weekend I remembered that I was due for some more aggravation, so I called Sprint to complete the deal. I was told again that I needed to speak with the business division…..and was duly transferred…..where I remained on hold for several minutes….before a recording picked up to inform me that the business division was closed on weekends.
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
I called back today.
I explained the situation….again.
Somehow I must have called the Nextel number again by accident.
The phone person told me this……..
“Sir…..we can’t sell new phones this week. We are in training with Sprint. We can sell new phones next week.
“You mean to tell me that the entire country is shut off from giving Sprint their money for a whole week.?”
“Yes sir……….you can call Sprint….but here at Sprint we can’t help you…..because we were Nextel……and we’re just learning how to BECOME Sprint……….so we can’t sell you Sprint phones until our Nextel brains have been deprogrammed and then reprogrammed with Sprint information.”
(Ok…maybe that wasn’t exactly what was said…….but that is what I heard.)
I called the other, other, other, other Sprint phone number.
I waited again……like an idiot.
I got another “person” on the phone.
Like a beaten mule I said, “I am ready to pay the $5.00 to open a new Sprint account.”
“Sir……there is no $5.00 fee….”
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
“It will just be a minute sir…..hang on for me…….”
And then I got disconnected.
Scott
Thursday, December 1, 2005 3:53 PM CST
Now that the shopping debacle of last weekend is behind me, I can move on with my life and try to suppress the anxieties and nightmarish flashbacks that have been haunting my dreams.
Zachary had a good checkup on Monday….and he started back on his chemo regimen Monday night.
We had soccer practice last night, and Zachary played pretty well. When we practice, there is a girl’s team that shares the field with us. So, after running drills, we scrimmage against them. (Practice game). Our record against the girls is 1 – 3. Our boys seem to be afraid of them for some reason. They see a girl running towards them, and they cover and hide like they might get cooties or something. Our goalie actually had the ball in his hands at one point…..saw a girl running towards him……dropped the ball……got out of her way…..and she kicked it in for a score. Amazing! They’re either deathly afraid of girls….or hoping to make brownie points for letting them score. (Actually I know that the latter is incorrect……our boys are VERY competitive….they hate to lose.)
Zachary has another practice tomorrow night, and then a game on Sunday. So I will update after the game to let everyone know how it went.
I hope everyone had a great turkey day. (We fried our turkeys like we do every year.) I honestly don’t know why anyone would cook a turkey any other way. Once you’ve had a Cajun fried turkey….you will NEVER go back to the oven style!
Scott
Friday, November 25, 2005 7:12 AM CST
42 years.
42 blissfully sane years.
42 years without chaos.
42 years.
42 years…..how did I let it happen to me?
42 years.
How does a man live 42 years without falling prey to the devil that IS holiday shopping, only to be sucked into the abyss of insanity and forever changed?
42 years.
Although I haven’t been officially tested, I am now convinced that all of the following conditions apply to me:
Agoraphobia
Claustrophobia
Shopophobia
Lineophobia
Moronicpeopleophobia
Yesterday was a wonderful day. We spent Thanksgiving with close friends and had a great day. Deep fried turkey, homemade pies and cakes…….games……….what more could anyone ask for?
At some point during the festivities, I must have exceeded the daily recommended dosage of triptophan, because I interjected myself into a discussion regarding the sales flyer for Circuit City. Rebecca and I had seen a few things that looked interesting in their flyer, but I have NEVER gone shopping on Black Friday, so I really didn’t give it too much thought. Our friends were talking about wanting to get a gadget for a Christmas present, so naturally, I volunteered to go to Circuit City at 5am when they opened and grab one for them while I looked at some of the items that I was interested in. The backup plan was Office Depot…they were also selling the gadget that my friends were looking for.
Now, having never shopped on Black Friday, I wrongly assumed that by arriving at 4:50am that I would easily beat the long lines……I mean….what kind of idiot wakes up on his/her day off at 4:30am to be a store to shop at 5:00am? I had it ALL figured out. I arrived at the parking lot on time and was instantly thrown into a state of horrific shock. There were about 600 people snaked around the building waiting to get in. The parking lot was beyond full……and there were two deputies on hand to keep things calm. While driving through the parking lot, I slowed down only enough to avoid running over any of the lunatics that were roaming around aimlessly, looking for the end of the line. I exited the parking lot and reformed my plan. The Office Depot store wasn’t slated to open until 6:00am, so I had an hour to kill…..surely they wouldn’t have the same type of line. I grabbed a news paper and a drink and headed over to that store. Luckily, they only had about 20 people in line. Unfortunately, I had not planned on standing outside in the 60 degree temperatures….so I roughed it out for an hour in my shorts and t-shirt. Office Depot had an ad for a computer for $99.00. So, everyone was waiting for one of those. Everyone except me. When they opened the store….the staff tried to keep some sense of control by having computer shoppers wait in specific lines to fill out forms to order the computers………..everyone else was on their own. Within 5 minutes of entering the store, chaos ensued……….the manager…….in a fit of utter stupidity…….had decided that virtually ALL of the items on sale in the flyer were to valuable to leave on the sales floor…….so EVERY item had to be retrieved from a specially locked room………a locked room that only HE had the key for. So everyone was yelling to him to grab this gadget….or that gadget…………it was ugly. Especially since the gadget that I was getting was for our friends……….that store didn’t have anything that I needed. But, a promise is promise….so I waited…..I got one…….I waited again….to pay……I paid…..and then I got the %$&# out of there!
Interestingly enough, this experience has solved a longstanding mystery for me. I am now thoroughly convinced that one or both of the following theories are indeed FACT!
Human cloning.
Aliens living among us.
Let me explain.
When I was at the Circuit City parking lot, every human of shopping age was there with me. Now, when I say ‘every human of shopping age’, I AM referring to EVERY HUMAN of SHOPPING AGE ON THE PLANET! So, when I left there and arrived at Office Depot….only to find MORE SHOPPERS…..one can only surmise that either A). The government is secretly cloning humans without our knowledge…….or B). There are aliens living among us.
The big story in the Office Depot line was the arrest at the Best Buy store…..their line was reported to be in excess of 600 people as well.
When I got home and turned on the TV, there was video footage of a fight at a Wal-Mart in Orlando………………more aliens I presume.
42 years of sanity thrown out like a turkey carcass picked clean by vultures.
42 years.
Scott
Monday, November 21, 2005 4:50 PM CST
Ok….enough torture….the strike is over!
(I’d be needing a new wardrobe if I kept gaining weight like this.)
This past week has brought adventures and sadness to our lives. The sadness came in with the news that one of our local relapsed Neuroblastoma children past away on Wednesday. Rebecca was able to attend the memorial service and learned that the child had also developed AML, presumably from the long-term exposure to chemotherapy. Its always sad to hear of another lost life to this disease, but when the child has Neuroblastoma, it hits even closer to home. The AML thing is scary on too many levels to even contemplate. I believe that he was on the same oral chemo that Zachary is on now. The AML could have come from previous chemos…….but it still sucks to think that we may be setting Zachary up for further disasters in the future.
Our adventure this week came from Zachary’s bowel movements. (Everyone grab a snack or sandwich for this one……it’s a great story to enjoy while eating some food.) Zachary had a bloody stool about a week or so ago…(It must run in the family…..he gets it from me.)……anyways……it didn’t seem to persist, so we told the doctor about it and he said that if it happened again, we should bring Zachary into the E.R. for a check. Well, Friday night Zachary had some blood in his stool when we were out to dinner. I was a witness to this….unfortunately……and it didn’t appear to be a large amount. Saturday morning however, was a much different event. Zachary was scheduled to have his soccer photos taken at 10:00am. He woke up and at about 9:00am he had a VERY bloody bowel movement. I don’t want to get into too many gross details…(or did I already?)…….but the water in the bowl was red. So, I called the doctor on the after hours number and prepared for the worst. The doctor called back and said that he wanted Zachary brought into the E.R. for an examination. (The E.R. is attached to our oncology hospital….about 45 minutes away.) By asking my a few questions, the doctor was able to determine that Zachary was NOT in any immediate danger or distress. He had practiced with his soccer team the night before….and he certainly wasn’t lethargic or acting out of sorts. He told us to get his photos taken and then to head down to the hospital. Rebecca was already going to be near the hospital, because of the memorial service, so I took Zachary for his pictures and then packed a suitcase (just in case) and headed down to the E.R.
You know…….I’m sure some folks would say that I can be a bit picky or demanding at times….(I personally don’t see it…but whatever)………so……I walked into the E.R. area and I read the signs very carefully. There is a nurse triage station and a clipboard with a pen……and instructions indicating that you should sign your name and wait to be called by the nurse. There were no other names on the list in front of us….and no-one else loitering around the area. I dutifully signed in and began to wait. Now, this is where things get a little bit confusing………for a nurse to triage patients……doesn’t there actually have to be a nurse PRESENT in the station to evaluate the incoming EMERGENCIES? (I know….I know…..we really weren’t in any critical type of situation….but they DIDN’T know that…..DID they?) I mean…..God forbid something serious was going on……….besides….the oncologist had already called in orders….knowing that we would be there….so they were aware we were coming. (By the way…when I signed in with the bowel problem on the sheet….I DID happen to mention that Zachary was an oncology patient…….on the hunch that it might come into play when a triage nurse actually did show up.) So, after about 20 minutes the nurse showed up and called us first….(by that time…there were another 4 patients on the list.) She did a thorough evaluation and made sure we got a private room….to avoid germs. The staff accessed his port without incident and did a thorough examination. They found an anal fissure. (Large poop……..small tear.) I think Zachary was concerned that we might have to allow them to sew it up or something…..but after the initial panic passed, we assured him that a change in diet (more fluids) and some antibacterial cream would fix the problem. We spent about 5 hours there and made it home for dinner.
So, that was our adventure on Saturday.
Sunday was the previously postponed Lion Country Safari outing with Connor Moran Children’s Cancer Foundation. We ended up having a beautiful day with a great turnout. After spending a day there trying to avoid contact with any flu infected birds, we were invited over to friends for an early Thanksgiving dinner. We got to visit with our friends and watch a little bit of football too. We made it home late…..just in time for Desperate Housewives…(Not that I watch that stuff)…..(Not that there is anything wrong with watching that stuff.)……(Ok….so I DO watch that stuff…….but only because Rebecca makes me.)……(Well….she doesn’t actually MAKE me watch it….in fact…she fell asleep and I watched it alone……but I watched it under duress…………not really.)
Scott
Monday, November 14, 2005 5:36 PM CST
[Pages from Scott’s private diary found without his knowledge.]
This stupid food strike is driving me insane. It is only in its fifth day and somehow I am GAINING weight! I’ve done my research and consulted with nationally recognized nutritionists and physicians to ensure that I would receive the proper amounts of food to sustain myself, but somehow everything has gotten out of whack. I have carefully reviewed my diet of Twinkies, cheese fries, Slim Jims, meat-lovers pizza, Marble Slab Creamery Ice Cream, chili cheese hot dogs and cheese cake……..and I haven’t been able to point a finger in any one direction that would help me figure out why I have gone up two pant sizes in five days! I will keep with this diet with the hopes of “settling in” to it and eventually looking more like a person on a hunger strike than someone preparing for a life as a Sumo wrestler.
I think I’ll torture everyone a little while longer by NOT updating the web page with information about how Zachary’s doctors visit went today. His counts were very good and the doctor was generally pleased with the check up….but I see no benefit in indulging the mass of non-guest book signers by letting them know what is happening. As a matter of fact….I don’t believe that I will let them know that Zachary’s team won their second game in a row….this one 5 -2. I also won’t tell them that Zachary was on defense and played very well.
Saturday, November 12, 2005 9:52 AM CST
Even though I am STILL firmly in place on my strike, I happened to accidentally stop by the guest book and notice that one or two folks left a word or so for me…presumably to help find a solution to this impasse.
First let me say that those of you that included recipes for eggplant and squash are truly evil and will most certainly pay for your wrongdoing in another life. If God had intended for us to eat those two abominations, he would have made them taste like chocolate or caramel.
Second, let me say that I am STILL on strike….so I am NOT going to give anyone an update. I certainly am NOT going to let everyone know that Zachary had a good week, and that he tolerated his chemo well. I also am NOT going to tell everyone that his second soccer game is tomorrow. I mean really…..WHY should I let you all know that he practiced last night and that his pulled muscle in his leg appears to be better. I AM ON STRIKE….THAT MEANS NO UPDATES!
Not Scott
Thursday, November 10, 2005 7:55 PM CST
Hmmmmm.
If we didn’t have a “hidden” tracking device on our Caringbridge page, I wouldn’t know that over 300 folks are checking out our site each and every day. It’s too bad they don’t have some sort of guest book area where people can stop in and let the family know that they’ve stopped by to check on them. Oh…wait…..they DO have one of those. Ok…it must be the lack of skill that I have used in writing my journal entries…..so, to express my lack in interest in writing journal entries for folks that show a lack of interest in signing the guest book…….I am going on strike. A food strike and a writing strike. I will not eat any squash or eggplant until people start to sign the guest book. And I will not write any more updates until people start to sign the guest book. (Actually I wouldn’t eat squash or eggplant if it was the last food on the planet….but that’s not the point…is it?)
Scott
Friday, November 4, 2005 4:13 PM CST
We are home from Ft. Myers from testing, (got home yesterday evening,) and we already have results!!! WOW…that didn’t take long. The doctor called this afternoon.
So…that was pretty much everything that I wanted to say……….we’re home….and we got results…..thanks for stopping by……take care.
Scott
P.S. Oh…..did you want to KNOW what those results were? My bad!
Results:
Slight improvement in some areas……stable in the others! No worsening!
The doctor agreed that unless we have new symptoms or problems, we can retest every 6 months instead of every 3….which will be easier on Zachary……and us. My folks met us over in Ft. Myers, and like us three months ago….they were AMAZED at the facilities over there. I know that I went on and on last time writing about how great it was over there…..but I just wanted to let everyone know that it wasn’t some sort of fluke…..the staff and facilities were once again outstanding.
After our last visit to Ft. Myers when I wrote about our experience, a cancer patient and her mother from that area were moved by my comments, Zachary’s story, and our experience. They started to email Rebecca with a plan to do something extraordinary for Zachary. Together with some friends, and one of their teachers, they got together and bought Zachary an Ipod Nano with a WHOLE bunch of accessories! We met with them Tuesday evening when we got over there. Not only did they do all of this for Zachary, they very graciously treated us to a wonderful dinner at the Olive Garden! We would like to say a very special thank you to Kim (mom), Lucia (teacher), Morgan (Lucia’s daughter), Whitney (cancer patient), Graham (friend), Kylie (friend), and Kim (friend). This group of people did a really amazing thing for a boy they had only read about on a web page. I’ve posted a photo of Zachary getting the Ipod; the two adults were not standing with the kids, so they are not pictured. The older kids (Graham, Kylie, Whitney, and Kim) all have known each other for several years from church and school. The younger girl (Morgan) helped to download the music onto the Ipod so Zachary would have songs to listen to while we were over there. (They had emailed with Rebecca to find out what kind of music he likes.) Zachary absolutely loves the Nano! His MIBG scan went very smoothly……..he set it for shuffle…..and slept thru the test!
When you look at the photo you’ll notice that Zachary really suffered thru dinner sitting with all of those blondes………he really DOES make sacrifices when called upon.
The only downside to the whole ordeal was trying to get my ears to stop bleeding after listening to some of his music when playing songs thru the radio. I’m hopeful that there is some sort of federal warrant in place for Eminem because of the torture he has inflicted on adults around the world. (I suppose that is why God invented earphones.)
Everything else is quiet here in South Florida….hopefully we will make it to the end of Hurricane season without any more storms.
Saturday, October 29, 2005 9:58 AM CDT
Hurricane Wilma has come and gone. For those of you living in South Florida, you are well aware of the damages that this storm has caused. By about 2:30pm on Monday, the storm was past us. We got electricity back at 4pm on Tuesday. It is now Saturday and there are still several hundred thousand folks down here without power. It appears that the hardest hit areas are south of us….Ft. Lauderdale and south Palm Beach county. I’m sure by now the rest of the country is getting tired of hearing about hurricanes and the damages that they have caused. After last year’s double hit, one would think that folks would have spent more time preparing for storms this year…..sadly that does NOT seem to be the case. There are many situations where people simply don’t have the means or ability to fend for themselves…..BUT, there are also many folks out there that just didn’t heed the warnings to take this storm seriously. (Well…enough of that…….the folks that I’m complaining about don’t have access to their computers right now….because they don’t have any power.)
Zachary finished up another two weeks of chemotherapy….and interestingly enough; he did NOT have the eye problems this time around. Hmmmmm. (Thinking out loud)… “We reduced the suspect chemo back to the original dosage and the symptoms didn’t reappear.” I wonder if there is any connection between those two circumstances. (Couldn’t be…..that would mean we the parents had an insight into our son’s illness that the doctors missed……..and we all know that THAT is simply not acceptable.)
Next week we travel over to Ft. Myers again for our three month MIBG testing. I promise to keep everyone updated as results are given to us.
This web page was created a couple of years after Zachary was diagnosed, so I don’t believe that I ever wrote about Rebecca donating her hair to Locks For Love after Zachary was diagnosed. There was a benefit in 2000 at a local bar, and a friend that cuts hair came down and cut off about 12 inches or so. Well, ever since then…Rebecca has been letting her hair slowly grow back in…..and this week, she did it again. She took some before and after photos, so I have added them to the photo album for everyone to see.
Scott
P.S. A couple of you guys questioned the veracity of my drunk driver story. Well, I hate to disappoint you doubters….but it is absolutely true and accurate…..all of it. I know that in the past I have ever-so-slightly stretched the truth to make a story interesting…but this is NOT one of those instances.
Sunday, October 23, 2005 2:32 PM CDT
***** HURRICANE UPDATE *****
Wilma? I can’t help but think of the Flintstones (no relation to us), when I hear the name ‘Wilma.’ But, I guess after tomorrow I will be associating that name with hurricanes. In case you live in an area that does NOT get any news, we are about to be hit with yet another hurricane. This one is scheduled (Yeah…I used the word ‘scheduled’ on purpose, because I’m fairly certain that The Home Depot gets to choose where and when hurricanes hit our country. If they need a little boost in profits or sales……they just have a nice little category 1 or 2 storm cause a path of destruction across our state.) to hit our area late tonight and most of tomorrow. The experts are pretty sure that it will have sustained winds somewhere between 1 and 5,000 mph. They are also pretty sure that it will have wind gusts somewhere between 1 and 5,000 mph. They are also mostly sure that it will make landfall somewhere between Key West and Alaska. So, with all of that scientific data on hand….we are quite comfortable with our hurricane plan. (It’s interesting that our hurricane plan is eerily similar to the emergency procedure used on commercial airlines…..”Place your head between your legs, say a prayer….and kiss your” ……well….you get the idea.) Hopefully our area will be spared the majority of the damage from this weird storm.
Zachary is enjoying his two days off from chemo. He played with his friend Lars today while my friend Eric and I put up hurricane shutters on our homes.
I had somewhat of an adventure last night/early this morning. I went out and played poker with some friends that live about 10 or 15 minutes away. The game broke up around 1AM, so I got in my car and headed home. Now, to fully appreciate this story, it might help to have some familiarity with US 1. This is a major route that runs from Key West all the way up to Maine. In our area US 1 has three lanes going in each direction. Those six lanes are divided by a concrete median. There are many traffic lights and intersecting roads that come off of US 1. When I got onto US 1 at 1AM, I was the only car traveling northbound. Almost immediately after making the turn, I noticed a car on the southbound side of the road pulling out of a parking lot and making a left turn onto US 1……..heading north……..on the southbound side………..am I the only one that sees a problem with this? Ok….my first reaction was this. It’s possible that this guy was too lazy to head south for one block to make the U-turn and that he was only 50 or 60 feet from a break in the median and he planned on cutting over. So, in anticipation of this maneuver, I moved over to the right hand lane to free up the left two. Unfortunately, there was NO break in the median anywhere near where this guy was driving….so that theory was thrown right out of the window. So, there we are…..driving side by side, separated by 3 lanes and a median, both driving northbound. Now, at this point in the story I feel it is necessary to admit that I was a little bit tired…it WAS 1AM…..and I was looking forward to crawling into bed. So, for about a millionth of a second, I started to wonder if maybe I WAS on the wrong side of the road……….I could have somehow passed through a parallel dimension and ended up in England….where I would have been on the wrong side of the road…….but sanity prevailed…..and I was able to quickly confirm that it wasn’t raining…..so it must NOT have been England. So……it was about this time that I noticed a southbound car heading in the direction of the idiot on the other side of the road. I quickly dialed 911 and got a dispatcher on the phone. I relayed my dismay at observing the rapidly approaching disaster to the dispatcher, and he merely asked where on US 1 we were. I looked up and saw a Nissan dealership, so I told the dispatcher that we were passing that…….he didn’t seem to know where that was so he asked me for an intersecting road. (I want to pause in this story to point out that I am QUITE certain that if I was driving on the wrong side of the road….heck…..if I made a turn without using my turn signal, I KNOW a couple of silent black helicopters would appear out of nowhere and hover overhead while special ops soldiers would descend down ropes with high powered automatic weapons all pointed at me….having triangulated my position with GPS locaters in my cell phone.) But this guy…..he narrowly missed the oncoming car and then quickly missed another that swerved at the last minute. So, after about a mile of this craziness, I tell the dispatcher that I am going to try and read his license plate….while driving along side him….at 40mph…..from opposite sides of the road. Well…..as superhuman as my abilities might seem to some of you at times…..I was unable to complete this challenge…..I did however stay close enough to watch where he was going……after a third southbound car narrowly missed him things got interesting. I looked ahead and informed the dispatcher that, while three narrow misses might be reason to celebrate…..I saw about 4 or 5 cars grouped together all heading south towards Mr. Lucky. At that moment, Mr. Lucky may have realized that he was outnumbered on his side of the road, because he suddenly turned into the exit of a Lowe’s shopping plaza. I was now in the left hand turn lane approaching the traffic light that gets you into the same plaza. I stopped and put on my hazards so I could see where this guy was going without creating my own accident magnet. The dispatcher assured me that the police were on the way….and he asked that I stay on the line with him. It was about then that I looked to my right and saw a deputy pulling to a stop along side of me. I told this to the dispatcher, and he said roll down your window and tell the officer where the car is. As I was rolling down my window…the officer threw it into reverse……lit up their blue lights….and pulled in behind ME! Oh great……….this is going to be wonderful……….it’s a good thing I only had about 54 beers while playing cards. (Only kidding…I don’t drink. I have champagne on New Years Eve….and a wine cooler once or twice a year….but NEVER when I’m going to be driving.) So the dispatcher tells me to wait for the deputy to walk up to my car and then tell them that I am on the phone with dispatch and that I am helping them track down the OTHER car that is out at 1:10am in the morning. The deputy took her time walking up, and by the time she got to me….I glanced over into the plaza and noticed that Mr. Lucky was now pulling into a dead end part of the shopping plaza, trying to figure out how he could get BACK out onto US 1 going the wrong way to wreak MORE havoc. I quickly told the deputy who I was, who I was on the phone with, and most importantly..WHO MR. LUCKY WAS. She made a quick determination that I was NOT the perpetrator and took off across the three lanes of southbound US 1 and got Mr. Lucky to stop his car in the parking lot. Now…here it is 1:15AM….I’m stopped in the left turn lane of US 1……with a police cruiser behind me…..lit up like a Christmas tree………all alone. The dispatcher then asked me who the deputy was. Hmmmmm…I’ll admit that I was not prepared for that question. I had dutifully observed Mr. Lucky on his wrong way trek. I Had given fairly colorful play-by-play commentary as he missed car after car. I had tracked him into the Lowe’s parking lot. I had kept an eye on him while he aimlessly maneuvered around looking for a way out of that maze…..but I had FAILED to get a DNA sample from the deputy to use in passing along her obviously secret identity to the dispatcher that I had assumed……SENT HER! He was truly concerned for her…..she was without her car…..trying to stop a man in a vehicle…..I could sense the concern, so I stayed put and gave him more play-by-play commentary. (Also….I didn’t want to drive off and get shot at for fleeing the scene of stupidity by Mr. Lucky.) After a few short minutes….the cavalry arrived. Three or four more deputies showed up. Eventually, one of them walked out to see what I was up to. She asked what had happened. I informed her of my story….and she told me that she was coming up US 1 and saw me sitting there with my hazard lights on and figured I was up to no good. She hadn’t gotten the call on Mr. Lucky. She asked if I could turn into the plaza parking lot and sit for a few minutes while they sorted it out. Once again…I didn’t feel like getting shot at, so I complied. I sat dutifully for several minutes until the deputy came over and explained that they were trying to figure out how to handle Mr. Lucky. Since there was no accident, and they had not witnessed his wrongdoing….they had to be careful on how they approached him regarding how impaired he may or may not have been. It turns out that while they were talking with him…..he started to get agitated…..and smelled of liquor. Hmmmmm… I usually classify both of those as being bad things when dealing with officers of the law. Realistically….I’d say that individually they can get you into loads of trouble….let alone exhibiting them together. I asked what the guy’s story was…..where did he say he was coming from/driving to? He told them that he had come from the south on US 1, but that he was pretty sure that he had been on the correct side of the road. Hmmmm. Interesting. I was the ONLY car on the northbound side….and I was blocking the left turn lane into the plaza….so how was he supposed to have gotten in there? Not my problem. The deputy walked away and then came back after a few more minutes to get my information in case she needed it. She then told me that they were going to take him to jail for DUI. She thanked me and sent me on my way. I got home around 2AM…..crawled into bed, told Rebecca the story…and passed out. Until….2:30AM when the phone rang. It was the officer…she was working on her written report and wanted to get the story straight. To be perfectly honest with you….I was SO out of it after sleeping for only 30 minutes, that I may have relayed the story of Cinderella to her….I don’t remember. Hopefully this won’t come back to haunt me…..when the guy got out of his car to do his roadside sobriety test….I did notice that he was about 7’ tall and weighed about 350lbs. I’m not saying that I’m afraid of being beaten up…..I’m just saying that IF I were attacked…and happened to shoot this guy in self-defense…….then I just KNOW there would be loads of paperwork to deal with.
Scott
Tuesday, October 18, 2005 6:57 PM CDT
Ooopps!
Ok…my bad.
I thought that I had already given an update from the specialist….evidently…..I have not!
Sorry.
The specialist did not see anything of particular interest in Zachary’s brain/eyes. He was a little concerned about the “fatty marrow” issue, but he deferred to the oncologist to deal with that gem. SO, I took it upon myself to email our oncologist from Ft. Myers, and he agreed with me and Rebecca. He feels that the increased chemo is probably causing the symptoms. He looked back on Zachary’s last MIBG scan and could not see any issue at T1….but we are scheduled to repeat those scans in a few weeks, so I guess we’ll have more waiting….and THEN more answers……soon. (Right!)
Meanwhile back at the ranch……..we held firm to our position that we wanted to reduce the suspect chemo. SO, yesterday at the doctor’s office, Rebecca was able to talk them into reducing the Temador……BUT, in exchange, they insisted upon increasing the Irinotecan. (Dirty rotten scoundrels.) Zachary started his most recent round last night, so it is a bit too soon to be judging whether or not any symptoms are on their way to visit us.
Meanwhile back at the OTHER ranch…..Rebecca has not been feeling quite up to par. She had a doctor’s office appointment today and was informed that she is more than likely in the middle of another Lupus flare up. Now, before any of you get the bright idea to start asking me medical questions about Lupus, I am warning you now that my training and expertise is limited to Neuroblastoma……sorry. I will say that her joint pain, fever, skin rash, and fatigue are all symptoms of this flare up. The doctor has decided to increase some of her medicines…..so hopefully that will get things under control without causing too many adverse side-effects on their own.
Flare ups are usually caused by added stress. Rebecca and I have been racking our brains trying to figure out what could possibly be causing any stress in our lives. I mean…we have the whole cancer thing hanging over Zachary’s head…..and of course the new symptoms that required an MRI scan of the brain…..and the waiting for results…..and the upcoming MIBG scans in November……BUT OTHER THAN THAT……we’ve got nothing going on….so we can’t figure it out.
On top of all of THAT….I have found a new and inventive way to torture not only Rebecca, but Zachary as well. Our good friends Mark & Susan have given us a piano. It belonged to Susan’s mom who recently passed away. The piano movers brought it over this evening……and shortly after dinner I was pounding away at the keys……cats from three counties could be heard screeching and meowing…..dogs were howling like they had been shot in the head with a high pitched automated whistle that wouldn’t shut off. So, if you hear an odd, out of key, slowly played, fumbling sounding song coming from a piano…..you’ll know where it is coming from!
Scott
Monday, October 10, 2005 6:33 PM CDT
THE RESULTS ARE IN!!!!!
I contemplated, (very briefly) the notion of typing in the entire MRI report from the radiologist. It is long, boring and mostly non-informative. So, I will cut to the chase and type for you the juicy part of the report. (Basically they don’t see any abnormalities in the brain/eye areas………)
“Incidental nonspecific 8mm slightly lobulated non-uniformly enhancing lesion projecting within the right temporalis muscle bundle at the lateral temporal aspect of the calvarium possibly reflecting a hemangioma. Other pathologies cannot be ruled out. Please refer to transaxial fat saturated post contrast image #13.”
Ok………I’m pretty sure that I know what ALL of the two and three letter words in that paragraph mean. There are even a few five and six letter words that I have seen once or twice before. AND, I can very proudly announce that there is at least one ten letter word that I have used in a sentence before. As to the rest of them…………….it sounds pretty impressive to me. I can tell you this though……spell check did not like most of the text from that sentence……..and THAT is good enough for me to discount the veracity of it!
After all…..if you can’t trust spell check….then what can you trust? (Besides…NO ONE calls my son “lobulated” on MY watch!!)
The other interesting and somewhat confusing if not totally non-committal paragraph reads like this: “Intermediate to low T1 signal intensity nearly diffusely throughout the clival body cavity probably reflecting incomplete physiologic fatty marrow conversion appropriate for patient’s age of 11 years. The remote possibility of clival lytic lesion in a patient with history of Neuroblastoma cannot be ruled out and correlation should be made with conventional radiographs of the skull base and/or bone scan.”
Hmmmmm……yeah…..lets hit him up with some more radioactive testing…..that is what he needs……..right! (These guys must get a commission for every scan/test they order.)
So…..the $60,000.00 question as always is………”What does it all mean Scott?”
How should I know…….I’m just the messenger.
It looks like all of you will have to wait some more for real answers to your questions. Wednesday Zachary is being examined by the specialist that ordered the MRI. He will have a copy of the report and the scans in hand………and of course he will have the patient too….(that usually helps)….so hopefully he will be able to add 1 plus 1 and get somewhere near 2.
I haven’t called Las Vegas yet…but my money is still on the chemo that was increased in dosage a few weeks ago. I’m guessing that we have exceeded the “Maximum Tolerated Dosage.” Time will tell………”All good things come to those who wait.”
“Patience is a virtue.”
“Waiting sucks big time…..hurry up with the results.”
(All good sayings……try and guess which one WE live by.)
Scott
Wednesday, October 5, 2005 8:08 PM CDT
Life must be boring here in Jensen Beach.
Boring?
Well, I assume it must be boring….I mean we have so little going on.
Just chemo two weeks out of every three.
Blood counts every week.
Exam every week.
School.
Sure…….I’d say life is pretty mundane around here…..and THAT must be why we are being blessed with some excitement.
Zachary is once again experiencing double vision, dizziness, headaches, and fatigue. Two weeks ago he had several days of this…..and he is once again being harassed by these symptoms. He has not been able to stay at school for very long. (And I KNOW he wanted to stay today, because it was the start of soccer practice…and staying all day at school was the tradeoff.) He only lasted about an hour. (Thank you Susan for helping us out by picking him up today.) (YES, I know there are several Susan’s that read this journal entry…but I’m FAIRLY sure that THE Susan will know who she is.) So, Rebecca called the oncologist’s office and they asked that Zachary be brought right in for an examination. While he was there, the doctor called the neuro-ophthamologist’s office and consulted with that doctor. Since the N.O. is unable to see Zachary until next Wednesday, he asked that we get an MRI of the brain! (Singing gleefully) “Oh what fun it is to have cancer…….la la la…”
So, tomorrow afternoon we are shooting down to Jupiter to get an MRI. Hmmmmmm. Jupiter you say? NOT West Palm Beach? Very curious…..very curious indeed. But isn’t Zachary’s doctor’s office AT the West Palm Beach campus? (Nodding) Hmmmmm. And you are going to Jupiter instead? YES I AM. Evidently the N.O. specialist doesn’t want the MRI done at the WPB hospital. HAH! It isn’t our paranoia. They suck! And evidently it is common knowledge.
Speaking of sucking……..I got a bill from the hospital on the west coast of Florida where we did scans in August. The bill showed $293.00 in charges……and it very clearly stated that our insurance “REJECTED THE CLAIM.” At the bottom of the sheet it stated that, “Your insurance has rejected this claim….please remit payment within 15 days.”
Hmmmmm. I’m pretty sure we met our maximum out of pocket about 28 seconds into the current year….so we should NOT have any claims being rejected. So, I called our insurance company and they informed me that they have NEVER seen this claim. So they have NEVER rejected it. Hmmmm. How could this be? I jotted down the guy’s phone numbers so when I called the hospital I could refer them to the actual person that had armed me with this tidbit of information.
I called the hospital.
The lady that answered the phone was NOT prepared to deal with the wrath of Scott.
I explained the situation and she pulled our file up on her screen. Evidently they HAD submitted a claim to our insurance company……with inaccurate and incomplete information about Zachary. So the claim was returned (not rejected) as incomplete.
I very calmly expressed my mild frustration with the hospital’s apparent lack of fair play for sending me a notice of supposed rejection when in fact, it was an incomplete claim. I STRONGLY recommended that they refrain from sending me any further such notices. She made a note in the file. (Probably something like--------“Irate, irrational, lunatic father has threatened to cross the state and rearrange my internal organs if don’t stop harassing him.”) Not really…..but you know me….calm, cool and collected.
So….back to the excitement in our lives. Apparently one of the chemos that Zachary is on has possible side-effects of dizziness, fatigue, vision problems…etc. It is also interesting that these symptoms started in the week following the last round of chemo… the round in which we last upped the dosage of this chemo. Hmmmmmm. I’m no Sherlock Holmes……well…..I just thought that I should clear that up….I’m no Sherlock Holmes…..you know…in case any of you were confused.
Scott
P.S. Here’s hoping that it is merely a reaction to the chemo. (Wouldn’t THAT be great, having to stop or reduce a much needed chemo……..MORE excitement?)
Sunday, October 2, 2005 8:45 AM CDT
Once again I find myself being admonished by a visitor of the guest book for not updating the journal entry for about a week. Ooopps! I’m sure I was solving the world’s oil crisis, or figuring out a way to permanently disarm the various terrorist organizations, or ridding the world of it’s deadly illnesses………or maybe just being lazy. Yeah…I’m pretty sure it was one of those things.
Zachary is doing better at school. His principal pulled Rebecca aside the other day and conveyed that he is much more adjusted and “fitting in” a lot better. He seems to be keeping up with his homework better and his test scores appear to be improving. It still pains me to force him to do homework and to study…….almost like he could be out playing or enjoying life more…….but I really don’t want him falling behind and having less and less in common with his friends. That would be horrible. We saw a movie yesterday, and today we might go to a fundraiser for Neuroblastoma that we heard about.
Speaking of Neuroblastoma, thank you again for the continued support and visits to the new Zachary’s web page. I just hear the other day that we have yet ANOTHER new diagnosis of Neuroblastoma from our area. That’s two in less than a month. Hmmmm. I wonder what could be causing all of these rare cancers………must be some sort of statistical anomaly or something…….(that was sarcasm in case you were wondering.)
For more information on some of the theories as to why we have so many rare cancer cases in children in our area, check this web page:
www.ourpowercompanyseemstohavepollutedourenvironmentwithradioactivewaste.com
If you can’t find what you’re looking for there, try this one:
www.ihopetheyrotinhellforallofeternity.com
Chemo went fairly well last week…….as well as chemo can go I guess. Zachary enjoyed his two days off over the weekend…..and I suppose he’ll handle next week’s chemo just fine too. Such is life………such is our life.
Scott
Monday, September 26, 2005 6:25 PM CDT
Thank you so much to everyone that answered the “call” and visited Zachary House’s Caringbridge page and signed the guestbook. I know that his family is very grateful to have so much moral support so early on in their battle.
Now, if I wasn’t SO impressed with your response, I’d probably be FURIOUS with all of you for signing someone ELSE’S guestbook but ignoring MINE! Sure…..you can find the time to wander all over the internet giving wonderful messages to TOTAL strangers…but when it comes to ME…you conveniently forget…what am I??????? CHOPPED LIVER?
Ok….I got that out of my system. I’ll be OK. I’ll get over it.
A good friend/customer of mine wrote an interesting letter to the editor of our local paper. He was nice enough to give me a copy of it today so I could relay it to all of you. Here it is:
Editor,
Here’s a sweet little fable.
Let’s say that you are an entrepreneur starting up a new business. You are going to manufacture Hoo-Has.
You go to the bank to get a loan to start your new business. The bank welcomes you with open arms. They have several hundred members on their loan committee, and almost all of them vote to loan you all the money that you need. A few of them vote no, questioning the strength of your proposed market since the international market price for Hoo-Has is about 60% of what you intend to charge for yours. However, through shrewd lobbying and persuasion you convince the vast majority to support you.
Your loan includes cash for equipment, etc., as well as a production bonus that will pay you 18 cents per unit for each Hoo-Ha that you produce.
You go crazy producing Hoo-Has!!! The 18 cents per unit that the bank is paying you turns into millions of dollars.
At the end of the year you have produced 500 million Hoo-Has and you have sold only 100!!! Holy cow! What are you going to do? You can’t sell your Hoo-Has! You’re going to go broke!!
Well, not really. See there’s a clause in your loan agreement that states something to the effect that if you can’t sell your Hoo-Has at the price you want, the bank will forgive your loan, and, in a remarkable gesture of good will, they will take your entire unsold inventory from you relieving you of any further responsibility for it. They will also, at their stockholder’s expense, build climate controlled warehouses to store it all in. And, to top it all off, they tell you that they can’t wait to do it all again next year! What a sweet deal!
How could you possibly get a far-fetched deal like this one? In real life, any loan committee that was stupid enough to enter into an agreement like this wouldn’t last a month! Impossible right?
It’s absolutely possible! A deal like this exists right now! If you substitute “Federal Government” for the word “bank”, and “congress” for “loan committee”, and “subsidy” for “loan and production bonus”, “taxpayers” for “stockholders”, and last but not least “sugar” for “Hoo-Has”, you basically have the sweet deal that the sugar companies get year after year. Even if we ignore the massive environmental damage they cause (and we can’t any longer) the incredible stupidity of this financial arrangement alone should be enough to stir anger in the general public not seen since the Boston Tea Party! It boarders on criminal malfeasance!!
We’ve got to tell the “loan committee” to pull the plug on this deal or we will pull the plug on them. It comes up for renewal next year. Our local congressman has already begun lobbying to get congressional support to renew it. TELL HIM NO!!! We’ve had enough. It’s time to TAKE BACK THE EVERGLADES!!
(That’s it…….I know it is not a nationally “hot” topic….but here in Florida it is BIG!)
Scott
Friday, September 23, 2005 1:41 PM CDT
*****FOX NEWS ALERT*****FOX NEWS ALERT*****
This is a special journal entry! Please view the journal history to see the previous entry.
I am reaching out to all of our wonderful readers/friends/family that have followed Zachary’s story for all of these years. We have a new family that has just joined the Cancer Sucks Club. They live in our area and their son has Neuroblastoma……just like Zachary. AND….his name is Zachary. He is 1.5 years old and is currently up in Gainesville with his mom getting treatment.
I would consider it a personal favor if EVERYONE would stop by their web page and sign their guestbook so the mom (Stacia) can see that we at the Cancer Sucks Club look out for each other and take care of our own.
Please add the new Zachary’s web page to your daily/weekly routine of sites to visit.
Thank you for your help!
Scott
P.S. Oh yeah…I almost forgot to give you the address……here it is:
www.caringbridge.org/visit/zacharyhouse
P.S.S. Please do it TODAY!
Tuesday, September 20, 2005 3:56 PM CDT
The more that I think about these journal entries as I drive around during the day, the more confused I become as to how to begin them. The middle and end are always an easy thing for me…..I just type out all of the thoughts that have bombarded me during the day….but it’s always the beginnings that perplex me. (I guess I solved that problem today by writing about nothing.)
Zachary had an eye exam this morning. He has been complaining about double vision and not being able to read without bringing the book very close to his face. I’ve also noticed that when he is online playing his computer game that he sits a little too close to the monitor. So, his oncologist recommended an exam. The local eye doctor did a thorough exam today and they pretty much ended up with more questions than answers. He IS having double vision in his left eye, and his vision has deteriorated from last year. It isn’t bad enough to warrant getting glasses, but there is a definite change. I found it odd that during the discussion with the doctor; I once again had to educate a physician as to the nature and history of some of his medications. Its not that the doctors don’t know what they are doing, it’s just that some of his medicines are not what you would call “mainstream.” So there I was, explaining what I know about the two chemotherapy agents that he is currently taking……and relaying my opinion as to how they may or may not have had an effect on his vision. (Weird.) (Such is the burden of an overachieving parent.)
The end result was that we have been referred to a neuro-opthalmologist in mid-October to try and figure out why he is having these problems.
But, putting all of these confusing medical issues aside, there are MUCH bigger fish to fry. This next topic could very well become the HOTTEST issue of our generation. I can’t believe that I haven’t been exposed to this possibly catastrophic issue before now. I can only pray that by addressing it now, we have caught it early enough to stem the flow of disaster that is surely on its way. And what is the name of this faceless enemy you ask? Sudoku. (If you just said “God bless you,” then you are mistaken…I DID NOT sneeze. Sudoku is a new game………devised I am sure by some evil empire…possibly the Japanese…(revenge for Hiroshima.)….or maybe the Soviets….(revenge for us winning the Cold War)…….or possibly even the Cubans!...(revenge for Elian.) I’m not sure…but let’s not rule anyone out just yet. So, what is Sudoku you ask…………well… it IS the work of the devil himself. It is a puzzle of sorts…..a 9 X 9 grid, made up of 9 smaller grids that are 3 X 3. The object is to fill in all of the numbers from 1 through 9 that are missing. The rules…..no row, column or 3 X 3 box can have any repeat of the numbers 1 through 9. Our local newspaper just started carrying this demon seed of a puzzle about a week ago….but if you are really brave…(or stupid), you can find many, many web pages online that offer Sudoku puzzles. My advice…..hide your children, lock up your pets……board up your windows…..and destroy any of these puzzles that you can get your hands on!
The other interesting “thing” that I wanted to address is a new song out there by Rascal Flatts. If you are not familiar with this group, they have that great song “Along the Broken Road.” Well, for some reason…….they have come out with a new song that addresses childhood cancer. Rebecca came home yesterday and was telling about this really depressing song that she had just heard on the radio…..she found the lyrics online and printed them out. Now, I’m obviously a manly man…..a real tough guy……not some soft hearted wimpy kind of guy that breaks down and cries over silly things like songs…..(although there was that AT&T TV commercial some years back where the daughter tells her mom that she called…”Just to say I love you.”….that one kind of broke me up a bit……..and then there’s that Extreme Home Makeover show………I usually get a little bit teary eyed when watching that one too…….and also…have you ever seen the movie Without a Trace?.......yeah….I sobbed pretty hard at that one……and then there is the Julia Roberts/Susan Sarandon movie Stepmom….that one gets me right in the heart too………..BUT OTHER THAN THAT…..I’m NO WIMP.) So anyhow…..this song……..well….I read the lyrics and I MAY have gotten a SMALL tear or two in my eye….but there were things flying around the room….so it could have been a bug or an ostrich or something that flew into my eye and irritated it……so lets NOT jump to any conclusions here folks. Here are the lyrics….if you can read this without getting choked up….well then you are a better person than me!
SKIN
Sara Beth is scared to death
To hear what the doctor will say
She hasn’t been well, since the day that she fell
And that bruise just won’t go away.
So she sits and she waits with her mother and dad
And flips through an old magazine
Till the nurse with the smile stands in the door
And says will you please come with me.
Sara Beth is scared to death
Cause the doctor just told her the news
Between the red cells and the white, something’s not right
But we’re gonna take care of you.
Six chances in ten, it won’t come back again
With the therapy we’re gonna try
It’s just been approved, it’s the strongest there is
And I think that we caught it in time
And Sara Beth closes her eyes.
And she dreams she’s dancing
Around and around without any cares
And her very first love is holding her close
And soft wind is blowing her hair.
Sara Beth is scared to death
As she sits holding her mom
Cause it would be a mistake for someone to take
A bald headed girl to the prom.
For just this morning, right here on her pillow
Was the cruelest of any surprise
And she cried when she gathered it all in her hands
The proof that she couldn’t deny
And Sara Beth closes her eyes.
And she dreams she’s dancing
Around and around without any cares
And her very first love is holding her close
And soft wind is blowing her hair.
It’s a quarter to seven, that boys at the door
And her daddy ushers him in
And when he takes off his cap
They all start to cry
Cause this morning where his hair had all been
Softy she touches just skin.
And they go dancing, around and around
Without any cares
And her very first true love is holding her close
And for a moment she isn’t scared.
(Ok….if your eyes are dry…then you just ain’t human!)
Scott
Saturday, September 17, 2005 6:12 PM CDT
THE JURY IS FINISHED DELIBERATING AND THE VERDICT IS IN!
(But first………..a word from our sponsor.)
Actually, I thought it would be a good idea to update everyone on Zachary’s status before going into the mundane task of reporting on my fate.
Zachary finished up another two weeks of chemo yesterday, so now he gets his seven day break. (A much deserved break.) He got sick a few times this week…once again probably from car travel. But until someone figures out how to teleport us around town, we’re pretty much stuck with the whole “auto” thing. Yesterday Zachary had a really good day. Connor Moran Children’s Cancer Foundation arranged for six children from the oncologist’s office to spend a day snorkeling and swimming with dolphins in Key Largo. Rebecca and a good friend drove a few of them down, and the others met them there. They had wonderful weather and enjoyed a great day! The facility has one side that is open to the public and another side that devotes its resources to children with life threatening illnesses.
So, back to the whole jury thing…..well…..I’ve been giving this a whole lot of thought, and I’ve come to the realization that if I am being judged by a jury of my peers, then doesn’t that mean that my peers are equal to me? AND, taking that thought one step further, if all of you are equal to me, then doesn’t that mean that all of you are as EQUALLY insane as me? OF COURSE you are! Well……..I don’t want this to deteriorate into a name calling thing, so I will take the high road and fall on the sword for all of you nut cases out there. I realize that there were many, many, many, many more ‘Not Guilty’ votes than ‘Guilty’ votes, (and I appreciate that greatly), but I’ve seen these kind of things get ugly before……. and in the end…..the public wants a fall guy. (I’m guessing that if I take a really good look into the mirror, I’ll see an excellent resemblance of the guy that is going down for this crime.)
On a lighter note…..we went out for Chinese/Japanese food tonight….(no, I’m not confused…they serve both there)…..and of course we had our fortune cookies afterwards. I’m sure you won’t be surprised to learn that once again, our fortunes were very curious….very curious indeed. Rebecca’s read: “The star of riches shines upon you.” Hmmmm….that could mean that we are going to succeed with our law suit. WOW. Zachary’s read: “A healthy body will provide you with a long life.” Hmmm. That is definitely one that I could live with. Now mine…..mine wasn’t even grammatically correct…..all it read was: “Wish happiness.” What the heck is that? Am I supposed to ‘wish’ it upon someone else? Is someone wishing it upon me? I don’t have a clue. Although…..I can’t help but think that IF Rebecca’s fortune comes true, I will have ‘riches’ by default……being married to her….so I WOULD have happiness from that. AND, if Zachary’s comes true, “a healthy body…”, then I DEFINITELY will have happiness……..so I suppose it is interesting that we ended up with the fortunes that we ended up with………especially when you consider that Zachary did the whole “ennie, meanie, minney, moe” thing before we got to open our cookies. (Think about that one while you are second guessing destiny and fate and all of that other stuff.)
Scott
Friday, September 9, 2005 6:13 PM CDT
Zachary is doing his chemo like a true trooper….he has not been complaining as much as he was a while ago, so we are pleased that he is “playing ball” at this time. We are not scheduled to repeat testing until November, and thankfully Zachary is not having adverse symptoms right now, so I would say that we are appreciative of the calm atmosphere.
Now, having said all of that gobbly-goop…..It is with a heavy heart that I must report that I am now fairly certain that I WILL be rotting in hell for a very long time. (Please don’t be offended if you are religious by nature….I am merely making an observation that my actions of two days ago will almost certainly guarantee me a reserved spot in the fiery depths of “you know where.”
And….what have I done to deserve this most unpleasant of fates you ask? (You DID ask……didn’t you?) Well…..I’m glad you asked…..because admitting guilt is the first step to making amends with whoever is in charge of deciding where I will be going in my afterlife. Before any of you let your imaginations go awry, let me assure you that I didn’t commit a felony…….I didn’t steal from anyone…..or attack anyone…..or kidnap anyone…..or threaten anyone……nothing that trivial…..I did something much worse. I broke that sacred (albeit little known) commandment which clearly states:
THOU SHALT NOT MAKE THY CANCER CHILD CRY
Yes….I know….I am a terrible parent…..but give me a break….I’ve only been doing this for about 11 years…….it’s not like I’ve had REAL training or anything. So, how did this all transpire you ask? (You DID ask….didn’t you?) Well….I’m GLAD you asked, because it is of course a story that needs to be told.
It all started a long, long time ago in a land far, far away…….(not really, but I love that opening.)
It all started when Rebecca got home from a meeting with one of Zachary’s teachers. Evidently our little angel has NOT been wearing his hearing aids. The teacher conveyed her thoughts about how she felt that Zachary was very bright, but that he wasn’t applying himself or even paying too much attention…especially when he would take out his aids.
Well……..one of our ROCK SOLID rules is that the hearing aids MUST stay in at ALL times during school. So, why was this sacred rule broken? “The other kids stare at me & will make fun of me.” (This is where the tears started……..mine, not his.) (His started when I made him explain in detail why he wouldn’t wear them.) Evidently he feels that the other kids will make fun of him. He is torn between wanting to fit in and be a normal kid, but at the same time, he is wearing a wig and has bilateral hearing aids. And he hasn’t let his classmates know WHY he is wearing a wig or using aids. We tried to explain this catch-22 that he has set up for himself…..when he was in elementary school, all of the kids and staff knew about his cancer and knew why he was bald and wore aids. Now, he is expecting other children to somehow inherently “know” to not see him as being different. After a long talk, (and many tears and tissues) he agreed to explain his dilemma to his principal and let her make a recommendation as to whether or not the other children in his class should be made aware of WHY he has aids. We sat with her this morning and she agreed with Rebecca and me that once the other children knew what was going on, they would be MUCH more likely to accept/understand Zachary and NOT focus on how he is different. The principal let Zachary work with another teacher while she explained to his class that Zachary just wanted to be accepted and NOT made fun of. After one day….the jury is not back yet…hopefully by the end of next week he will notice that the other children are no different than the children from his earlier school, they will accept him and befriend him….and not see him as some “freak.”
So…….as you can see………I obviously had to punish him for not wearing his aids in school when he had promised to from day 1. So, I am of course a monster….I am the dark lord that resides in that most evil of places….and I WILL be dealt with in the afterlife for my indiscretions!
How is it possible that in his darkest hours of preteen misery I am the bad guy? Here he is trying to fit in and NOT be different, and his mean uncaring father is punishing him, adding insult to injury.
I am throwing myself on the mercy of the jury (that would be YOU.) Take the closing arguments from the two attorneys into consideration and then make your choice. Guilty or Not Guilty.
Prosecutor: “This poor excuse for a father has repeatedly shown that he IS the bad guy in the parent mix. He has a child who has been battling this horrible disease for half of his life and what does he do? He PUNISHES him when he steps ever-so-slightly out of line. The lack of compassion can ONLY be met with a stiff punishment……..I am asking that you return a verdict of GUILTY. And I am asking that you give this monster the maximum punishment allowable under the law……eternity in hell.” “Thank you.”
Public Defender: “This poor excuse for a father has repeatedly shown that he IS the bad guy in the parent mix. He has a child who has been battling this horrible disease for half of his life and what does he do? He does what ANY freakishly hardnosed parent would do…..he punishes him. The lack of compassion is clearly a sign that he is mentally unstable. I am asking that you return a verdict of NOT GUILTY by reason of insanity. Think back to the fake sister he fabricated a few years ago….and wasn’t it just last year that he invented a new monkey? A NEW MONKEY! The man is clearly a couple of french fries short of a happy meal. We are asking that you return this plea and have him remanded to the state mental institution for several years of evaluation.” “Thank you.”
Scott
P.S. Vote now….and vote often.
Saturday, September 3, 2005 12:54 AM CDT
I was pleasantly surprised to see all of the responses to the “crust” issue. A few of you asked about Zachary’s “Pizza eating habits.” Well, I inadvertently failed to mention that Zachary has a curious habit of NOT eating the crust from pizza……yet…….he gobbles up the breadsticks……which are pretty much identical to the crust of pizza…..go figure!
I was reading an article in the newspaper the other day and caught notice of the phenomenon know as a “blog.” (Spell checker doesn’t like that word…by the way.) I have seen this word used before and never gave it much notice. Now of course I’ve come to find out that I am guilty (if there is any guilt in doing it) in participating in this practice. Here….all of this time I thought I was writing journal entries….when in fact I was BLOGGING!
I looked up “blog” on Google…..and it came back with 158,000,000 responses …..(Yes…you read that correctly 158 million.) If you don’t believe me go type it in yourself. I didn’t bother reading any of the links…..I figured…..well….I’ve somehow managed to fumble my way through this whole “blog” thing for a few years now….I guess I can handle it for awhile longer without reading up on how to do it.
Not a whole lot more to write about today…………at least on the home front. Zachary is finishing up his “off” week from chemo….and preparing for another two weeks of fun.
Scott
P.S. I have watched extensive TV coverage of the aftermath in the Gulf Coast region from Katrina. It is truly horrific. It is difficult to imagine the city of New Orleans recovering from the devastation…..but hopefully they will be able to rebuild. To everyone out there that has family and friends from that area…..please know that our thoughts and prayers are with you/them.
Monday, August 29, 2005 6:38 PM CDT
Some topics are off limits. (I know….I know………you’ve been reading this page for months and months and you can’t possibly imagine ANY topic being off limits after reading some of my entries.) But the truth of the matter is…..some subjects are just taboo. Having said that, I have decided to breech that sacred ground of unspoken horror, the one subject that NO parent wants to discuss or admit to even EXISTING……and that subject is…………
CRUST
That’s right, you read correctly…..CRUST. Not eye crust, not crust from a scab….but plain old bread crust.
Zachary has LONG been a member of that secret cult of children that have some sort of mental issue with crust. Zachary's obsession with this particular oddity has transcended all aspects of logic as our society has come to know. On some level, I can almost (ALMOST) sympathize with him in his endeavor to avoid crust. I can remember eating peanut butter and jelly sandwiches as a child and wanting to peal away the crust, so that the flavorful part wasn’t ruined by the dry part of the bread. But I’m sure my mom instilled in me a greater sense of not wasting good food, just to satisfy a whim of the taste buds. Our Zachary has taken the art of avoiding “crust” to a new and gargantuan level. (Yes, I put crust in “” marks for a reason…..because Zachary has found crust in places that even I didn’t know existed.)
Sure, it started with “regular” bread……and the obvious crust that encompasses it. Then, somehow he magically determined that hamburger buns ALSO have a crust. This one confounds me today as much as it did the first time I saw him surgically removing the inside of the bread to avoid the crust. A similar exposition occurred while he was eating a bagel one day. (Isn’t the entire bun or bagel a crust….and also NOT a crust?) Don’t ask Mr. Zachary…..the answer will surely confuse and upset you beyond reason.
I think two of the more colorful “crust” issues have come from French fries and pickles. (I can almost see your eyebrows rising in disbelief at reading that.) The French fry thing has always pissed me off. He doesn’t always do it, but he’ll actually break off the ends of the fries and eat the entire middle part….as if the ends taste ANY different! Then there is the eating the seed part out of the middle of a pickle……to of course avoid the “crust.” I have been searching online and have not been able to locate a psychologist that specializes in this sort of psychosis. Sometimes I actually lapse into a daze where I start believing that he’ll NEVER outgrow this bizarre behavior.
(On a personal note I would like to say a HUGE “Thanks for nothing” to the company that makes crust-less peanut butter and jelly sandwiches………thus ENCOURAGING this outrageous behavior.)
Scott
P.S. The most recent food to join his “list” of oddities is green beans….he’ll break off the pointed ends and eat the middle……I guess I should be happy that he eats ANY part of green beans……but give me a break….GREEN BEANS!
Wednesday, August 24, 2005 8:06 PM CDT
Boy oh boy! I put ALL of that creative energy into my last entry and THEN, I get a paltry handful of guestbook entries….and NOW everyone is complaining that I haven’t updated in a whole week. Ok….I admit it…….I get lazy every now and again….but I figure it’s my privilege.
Zachary is still trying to find his way with his new school. He is doing much better! He has NOT gotten into any trouble….which is a good thing. It would have sucked to have had to ground him for the next 50 years if he got sent to the principal again. He has been doing his homework everyday, and he hasn’t really complained about school too much. He stays in touch with his friends and is constantly comparing notes as to how great their school is. (He is still hoping that eventually we’ll let him switch…..like in another 5 months or so…….) (Keep dreaming kid.)
Medically, things are pretty much the same. We finally got an answer from the doctor as to why they keep upping the dosage of chemo that Zachary is taking. The answer is….. because we are kind of sort of “mirroring” a chemo protocol that requires regular upping of the dose until a maximum tolerated level is achieved. Hmmmmm. This is an interesting theory that they’ve got going. “Keep giving the kid as much chemo as possible until they get real sick….then we know we’ve given them too much.”
On some levels I guess it makes some sort of sick demented sense. You don’t want to be under medicating the child and robbing them of potential benefit, but on the other hand, if the current level of chemo is keeping the cancer at bay….why torture the kid? THAT is the $60,000.00 question. I keep thinking back to when Zachary was taking I.V. Irinotecan for those 22 months. I can’t help but remember the warning from the one doctor that too much of some of these chemotherapies can lead to secondary leukemia. (NOT an ideal scenario.) So, upping the dosage on a regular basis is making us very nervous. We are once again in search of that delicate balance where we get the maximum benefit without sacrificing too much quality of life. (I seem to have lost my copy of the “Parent’s guide to cancer with ALL relevant questions and mysteries answered in easy to understand text.”…..can I borrow one of yours?) Now THAT’S a book that needs to be written.
So, I guess we will have to figure this one out…….on our own…..again…….
He has not had too much excess nausea during the day, so that is a very good thing. And, he has not been complaining at school too much about dizziness or other problems…..so THAT is a good thing too. All things considered……..this “one day at a time thing” sucks.
I know that I mentioned in an earlier entry that I wasn’t going to write constantly about the lawsuit….(and I won’t.)…..but I thought that some of you might find it interesting to know that Ed Markey, (Congressman from MA) has filed a congressional inquiry with the Nuclear Regulatory Commission regarding our case. If you go to this link, you can read the letter that he wrote. (Very interesting stuff.)
www.house.gov/markey/Issues/iss_nuclear_ltr050810.pdf
(I'm not sure how to make this an active link...so you'll have to cut and paste it....sorry.)
I don’t know what will come of this…but it is somewhat reassuring to know that the issue is starting to be taken seriously!
Other than that……we are pretty much settling in for a rainy/windy weekend. Tropical Storm Katrina is working her way on shore as I write this…..(we are getting the outer bands of rain.)……it doesn’t look like the storm will have a chance to develop into anything more than a very rainy and slightly windy storm….but if you’re watching the Home Depot Channel…I mean the Weather Channel….you’d think we are facing the end of mankind as we know it. On this morning’s broadcast, they were actually comparing this storm to Hurricane Andrew! (Just because it is following a slightly similar pathway onshore.) Hurricane Andrew had winds in excess of 150mph….this one is blowing at about 50mph……BIG difference. But it sure does sell plywood and generators.
Once again I apologize for the delay in journal updates……..as always….I am accepting comments and suggestions for this page at our alternative site:
www.mindyourowndamnbusiness.com
Scott
P.S. If you have problems accessing that last web page, try this one instead:
www.youarereallygullible.com
Tuesday, August 16, 2005 6:49 PM CDT
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Ok…so I have a lot to write about…big deal….nothing new to those that know me for being full of hot air and worthless stories.
Let us start off with Zachary’s new school adventures. (I could probably spend about 10 journal entries on this one subject, but for the sake of everyone involved, I will edit my remarks down to one section.)
I don’t remember if I told everyone in an earlier journal entry, so bear with me, but Zachary is now going to a private school at a local church. We had a choice between sending him to the public middle school (huge class sizes…..very intimidating upper classmen,) or finding a private school that would accept him on short notice. Because of his illness, Florida has a program that pays for part of the tuition to attend certain private schools. The one closest to us had a waiting list, so it took until about 7 days before school started to find out that he had been accepted. Because of the short notice, Rebecca and I never had a chance to coordinate a meeting with the principal and staff to “educate” them as to some of the special needs and concerns that surround a child like Zachary. We called our local Pediatric Oncology Support Team child life specialist and arranged for a meeting for the end of the first week of school.
Well, that first week was hell. (Actually it was ‘heck’….they don’t like the other word in religious institutions……and I can’t say that I blame them.) Between the uniform, the wig, the hearing aides, the new kids, the new teachers……..there was NOTHING for Zachary to say positive about the school. Each and every day he gave us grief about being there….and how he wanted to attend the public school. By the end of the first week, we were black and blue from the verbal beatings we were taking every day from Zachary. Once we got to the meeting with the principal, teachers, and the specialist, it became QUITE clear that if ANYONE was going to be receiving black and blue marks, it would NOT be Rebecca or me! Our little angel spent the better part of the first week of school pretty much doing whatever the HECK he pleased. If a teacher asked him to open his science book to a certain page…..he’d open his Harry Potter book and start reading. If he was told to tuck his shirt in….he refused and got sent to the principal’s office. I could go on, but my blood pressure is not supposed to go above 2,000 over 1,000, so I’ll leave it that he was NOT a good boy! We spent the rest of the meeting discussing ways to handle Mr. Zachary. I made it very clear that he was to be punished in the same way any other child would be. No exceptions…no special treatment. (I think part of the problem was that the staff at Zachary’s old school knew him for so many years and knew what to let him slide on and what NOT to let him slide on………I guess it is intimidating for a new school to have a child like this thrown in their laps.)
When we got home, we had a VERY long talk with Zachary about what kind of behavior is appropriate at school and what kind is NOT. We also made it clear that he would become a model student, or suffer dire consequences. He admitted that he had taken advantage, and that he would fix what he had done. Monday, he apologized to the principal and asked for a “do-over”. She agreed! So far this week he has been much better. He is wearing his uniform and following along with the other students. And the Harry Potter book is staying at home!
Now on to a somewhat touchy and sensitive issue. I’ll ask that any readers under the age of 85 please refrain from reading past this sentence.
To protect the innocent and save face for the truly stupid, I am changing the name of the subject in this next story to protect myself…..(I mean to protect THEM.) (Not me…..I DID NOT mean me.) (It is definitely some OTHER idiot.) (Not that I’m an idiot, but this particular idiot is NOT me.)
Ok….so yesterday I was really, really constipated. (I mean this anonymous person was really, really constipated.) (We’ll call him Ralph.) Ralph was really, really constipated. So Ralph gets home and after two very difficult attempts to evacuate his bowels gets the bright idea to seek medical assistance. Ralph remembers that about three weeks ago while preparing for a colonoscopy…(YES, Ralph also had one three weeks ago…this is NOT me…remember?)……he had taken some over the counter stool softeners along with the prescription laxative to achieve the desired effect. So, I dug through (I mean he dug through) the medicine cabinet and found the stool softener. He read the package carefully enough to determine that the adult dose was 1-3 pills per day. Feeling pretty backed up, but not wanting to chance anything……Ralph took two pills and went about his evening. At approximately 1:32AM, a low grumbling feeling in his abdomen woke him out of a deep, deep sleep. Erring on the side of caution, I (I mean ‘he’.) made his way into the bathroom and sat on the toilet. Try at this point to imagine a dam. A very LARGE dam that is being held back by a single cork. Now try to imagine that cork shooting out of the dam at several million miles per hour. Now try to AVOID imagining what actually occurred. Ok……now let’s fast forward a few hours to 3:35AM when once again, Ralph’s stomach awakens him to the same gurgling and rumbling that occurred two hours before. Ralph once again finds his way (rapidly) into the bathroom, and once again he has a religious experience on the toilet. Amazingly, he is reminded of another bathroom experience that was eerily similar three weeks prior to this incident. At some point during this second bathroom trip, he is QUITE convinced that his colon is SO empty; there must be G.I. doctors all over south Florida waking up and reaching for their intestinal anal probes out of habit, having heard the sound of a sparkling clean colon in the vicinity.
I’m not sure what the exact time was when our poor Mr. Ralph had his epiphany, but I’m guessing it occurred about 15 minutes into the 3:35AM evacuation. This epiphany came in the realization that approximately 6 hours and 35 minutes before sitting on the toilet for the SECOND time that night, he had inadvertently taken two LAXATIVES, instead of two stool softeners. (Shame on you who are laughing at my expense right now…I mean at Ralph’s expense.) Needless to say, having this vision of stupidity at 3:50AM (or so) in the morning did little to relieve Ralph’s stomach problems. I’m sure it is a quite common mistake……I mean really…..the words “laxative” and “stool softener” are nearly identical…..except the letters are all different and they don’t sound alike!
There you have it folks…..TWO WHOLE updates in one. You really got your moneys worth today. (Unless of course you are prone to nausea…then I’m truly sorry.)
Scott
Thursday, August 11, 2005 7:22 PM CDT
MIBG RESULTS ARE IN!
Usually I type out the entire report, but I’ll save everyone from having to get out their medical dictionary to translate the ‘big’ words………..the overall impression is…
“Allowing for differences in technique, there has probably not been a significant change!”
There were a few areas that the doctor felt had improved slightly, but since this was our first time on their machine, the impression written above is probably the safest bet. They are very comfortable with waiting to test him for three months (November.) The doctor over there also agrees with me that there is NO need to put Zachary thru another bone marrow test at this time. As long as he stays pain/symptom free, testing once every three months should be adequate.
Scott
P.S. If you are following THE STORY in the news, type in Zachary’s full name in a Google search and you will see some new articles that have quotes from our attorney.
P.S.S. There are a few errors in articles that have been written. Zachary does NOT have brain cancer. He has Neuroblastoma. Also, the reports of his death have been GREATLY exaggerated. Unless he is haunting our house, I’m quite sure that our rambunctious 11 ½ year old is still QUITE alive!!!
Sunday, August 7, 2005 3:16 PM CDT
Thank you all for the input on Zachary’s wig. (I’m a little bit disappointed with the wishy washy “waffling” responses.) Either you like it….or you don’t! (Everyone has to be so politically correct these days.)
THE STORM HAS ARRIVED
The NY Times broke the story last night about our law suit and some of the newer developments. By 4pm today there were over 100 news organizations around the world that had the story on their websites. Our local paper ran it front page! I don’t want to turn this site into something it is NOT meant to be, so, if you are interested in reading about it……just go to a search engine (Google) and under the ‘News’ heading, type in “Radioactive waste.” You’ll find more stories there than you’ll know what to do with.
I don’t know what will happen next with all of this, so don’t ask please. It’s out there now for people much smarter and much more influential than me to deal with.
Zachary starts his new school tomorrow. It has very small class sizes…(about 15 kids), so hopefully he won’t be too overwhelmed. The higher dose of chemo is making him much more nauseous than before….he got sick again today after driving over to Blockbuster for a movie. I hope we can help him get it under control so he will feel better and maybe prevent it from interfering with school too much.
Scott
Friday, August 5, 2005 7:34 PM CDT
Drama….News….Photos……..(where to begin?)
I guess I should start with an update from our trip to Ft. Myers. We left Tuesday evening and stayed about five minutes from the hospital where we were scheduled to get the MIBG scan. Wednesday morning we reported on schedule to the doctor’s office and began our Ft. Myers adventure. WOW. If you were to sit down with a clean slate and start from scratch on designing a PERFECT pediatric oncology hospital and doctor’s office, you would invariable end up with what they have over in Ft. Myers. If you are a permanent resident of that area and are fortunate enough to have that hospital as your home base, then we are VERY jealous of you. Some of you are probably thinking…”The grass is always greener……”….blah blah blah. Well guess what? IT IS GREENER OVER THERE!!! (At least it appeared to be.) The doctor’s office is located IN the hospital. NOT across the parking lot in some medical pavilion. Inside the office, they have ALL of the normal things that you’d want in a children’s cancer facility. Games, video games, TV sets, clean rooms…….nice staff…..but then…they also had two treatment rooms where they do the bone marrow tests. The anesthesia staff COME TO THEM. EARLY in the morning….NOT at 2pm…….mixed in with adult patients. They have their own RECOVERY area….where they can accommodate 4 patients (post procedure.) All with state of the art monitors and equipment. Keep in mind…if anything WERE to go wrong….YOU ARE ALREADY IN THE HOSPITAL. (You wouldn’t have to travel far for help.) They have their own infusion area where the kids can get blood or chemo without having to leave their office area. That section has TV sets and game and movies galore…so the kids will never get bored there. We also got a tour of the pediatric oncology floor. WOW AGAIN! The rooms were amazing. Couches that open up into nice beds for the parents. Spacious closet and storage areas for personal items. Cordless radio controlled monitors that allow the children to move freely around their room without cords dangling all over the place. HUGE bathrooms with full showers/baths. The playroom is open ALL OF THE TIME. (Not just when the hospital is able to find someone to “man” the room. They’ve got a big 42” flat screen TV for watching games or movies. All in all….we were very, very impressed.
After our exam, nuclear medicine came down to the office and injected Zachary in the infusion room….saving us the trip to another part of the hospital. (That would NEVER happen over here….not in a million years.) The scan went very well too. The staff couldn’t have been more accommodating. They were courteous, kind, caring…and any other word that begins with a hard ‘c’ or ‘k’.
We won’t get the results until Monday, but the doctor spent plenty of time with us and talked about his impressions of Zachary from both camp, and his exam. (He had been at Boggy Creek as the oncologist for the week.) (He was also our original diagnosing doctor 5.5 years ago at St. Mary’s.) He feels that Zachary looks GREAT! His opinion is that Zachary’s disease is stable. (Not in remission…..but stable.) He definitely believes that Zachary falls into the relatively obscure category of “Chronic Neuroblastoma.” There really aren’t a whole lot of kids in the country that fall into this category…and, it hasn’t been used for too many years. The doctors are not sure if some of the newer chemo agents are responsible for this new phenomenon. He had only seen ONE other patient in his practice that he would label as “chronic.” And he made it clear that Zachary was WAY further out from relapse than most of the children that he had heard of. Also, he made it clear that our quality of life has been excellent. (Most of this we already knew…partly from conversing with other families from around the country, and partly from reading and researching about the latter stages of this disease.) So, what is giving us this unique and generous gift of life? Ahhhhhhhh…..THAT is a good question. If we stopped the chemo, he may progress quickly and lose the battle…..or, he may go for months and months or even a year or so and stay stable. No way of knowing…..and of course….TOO big of a gamble to try and quit. (No matter how much Zachary wants to take a break from treatment.) Then there is the “Protocel” factor….(actually you have to whisper when you say that…..the doctors don’t like to recognize the ‘P’ word.) Lastly but CERTAINLY NOT least…..there is the prayer factor. I don’t know exactly how many people around the globe are praying for Zachary, but I wouldn’t trade ONE of them away for a pot of gold!
So, there you have it. He is more than likely still stable at this time, (we will get the report next week.) We have been advised to change NOTHING in our treatment plan. We only need to repeat this test four times/year. Which means we will be going back in November. As far as “backup” options for if/when this current one stops working….there is a new phase I therapy that is showing some promise and may be a good option for us down the road. The closest treating facility for that one is in Atlanta. (Thank goodness I’ve got family there.)
The other drama in Mr. Zachary’s life is his new wig. He was able to pick it up today and have the final fitting. (I’m so used to seeing him without hair, that I don’t think I’m a good person to comment on it.) SO, we are turning to YOU….the viewing audience, to help us decide whether this ‘wig’ thing was a good idea. I have added a photo to the album showing Mr. Zachary in his new doo. Post an opinion in the guest book…..we’ll be waiting!
Scott
P.S. My results from the polyps came back. All three were pre-cancerous! If I had not gotten sick in June, I would probably have not been tested until I was 50. Had that happened, the doctor is convinced that I would have gotten colon cancer. Amazing how some things work out.
Friday, July 29, 2005 2:58 PM CDT
As we rapidly approach the beginning of a new school year, there are bound to be some dramas developing in our lives. The two largest issues on young Zachary’s mind right now are his loss of hair again, and the school uniforms that he must wear. His hair has slowly developed into an issue over the summer as his doctors have slowly increased the dosage of chemo that he is receiving. Rebecca and I have noticed that especially on the back of his head (it rubs the pillow during the night) he has thinned out greatly. Now that Zachary has become MUCH more aware of girls and his appearance around them, he has noticed that his hair has gotten thinner. He also sees it in the morning all over his pillows. So, we finally convinced him that shaving down with a #1 or #2 razor setting was the smartest thing to do. He agreed, but only after he was promised a visit to a local hair specialist that fits children with wigs. We are fortunate to have gotten help from Connor Moran Children’s Cancer Foundation with that visit. So, Zachary has selected his color and style, and he is now waiting for the final product to arrive. The second issue, the school uniforms is being addressed as I type this entry. Zachary is with Rebecca shopping for the school accepted clothing. (I got a ‘get out of jail free card’ on this trip because I am just now waking up from my morning medical adventure……which leads us to another story.)
I’m going to offer up my humble advice for those of you that (for whatever reason) need to undergo a colonoscopy. My adventure with this wonderful procedure began when I got salmonella poisoning back in June. One of the symptoms that I had, prompted the doctor to insist that I get a colonoscopy….even though the lab results were definitive for salmonella. So, being the good sport that I am, (Did I just hear a snort or cough from the reading audience?) I agreed to play along and do what was necessary to appease the medical community at large. Upon my first visit to the GI doctor, it became obvious very early on that I would have to make an extremely important decision. Option #1 was to drink a VERY nasty tasting liquid (in small amounts) to induce the colon cleansing effect. OR, option #2, mix a powder into 64oz. of Gatorade and drink a NOT so nasty tasting liquid (in larger amounts.) I CHOSE POORLY! Not being one to deal with nasty tasting ANYTHING, I wrongly assumed that I could drink 64oz. of Gatorade within 2 hours. I WAS WRONG! The first 1.5hours went well enough, but then I started to get full…….REALLY full. Full to the point where I was a little nauseous. Now, nausea on its own is not the end of the world. BUT, when you factor in the stool softeners and turbo laxatives that I had been taking, you can see where a recipe for disaster is brewing. Without getting too graphic, let’s just say that having nausea and diarrhea at the same time can be VERY dangerous. If you choose poorly, you end up messing up MUCH more of the house than you originally intended to.
Lucky for me the nausea feeling passed and I successfully ‘cleansed’ my colon. Once again, without getting too overly graphic I feel it is my DUTY to pass along this little tidbit of advice. IF you are scheduled to have a colonoscopy, DO NOT, under ANY circumstances eat corn within two days of the procedure. (Scratch that.)
If you are EVER considering having a colonoscopy done in your lifetime….DO NOT EVER EAT CORN……..EVER!!!!
Ok…..I feel better having gotten that off of my chest. (Feel free to vomit at any point during this journal entry.)
The interesting/scary news is that I did end up having three polyps. One of which prompted the doctor to say, “It’s a good thing you didn’t wait until you were 50 for this test.” The final lab work won’t be in until next week, but I’ll sleep better knowing that my colon is as clean now as it was 42 years, 5 months, and 9 days ago when I was born!
Scott
Sunday, July 24, 2005 2:57 PM CDT
I am back from the wild, wild west trip. (Actually it wasn’t so wild….but while typing it out, it sounded really cool to put that in.)
Our first day and a half we spent in California at the factory where they make the reels that we distribute here in Florida. That facility was amazing. They use mostly automated machinery that does incredible things to raw aluminum before spitting out perfectly machined components. Tuesday morning we left California with the owners of the reel company to drive to Las Vegas for the annual tackle show. The drive is about 4.5 hours through the desert….an interesting trip to say the least. We had two vehicles. The one I was in had about ¾ of a tank of gas before leaving CA. The other truck filled up, so it was ready to rock and roll. The owner that I was with was pretty confident that we could make it on ¾ of a tank, but with the heat at around 117 for most of the trip, I think we were burning more fuel than anticipated because of the A/C being on high for so long. We tried turning it off on some of the steeper climbs through the mountains, but after about 10 seconds of no air, you start panicking and suffocating….so that didn’t work out too well. We got about 60 miles from Las Vegas when the low fuel light came on and started beeping at us. So, being the smart guys that we are….we exited and went straight to a gas station……where the pumps where all closed. So…..we got BACK on the highway and went several more miles where we found another exit that had a sign offering gas……and once again…the pumps were closed. Ok…..now it was getting interesting…..we were down to our last gallon or two…(maybe 20 or 25 miles of fuel) and it was not getting any cooler outside. We pulled over into a rest area with the other vehicle that we were traveling with and discussed our options……we could try to siphon some fuel from one vehicle to the other……or call for help. (There were plenty of cars/trucks traveling the highway….so we were not alone.) We decided to try ONE more exit that we saw about 3 miles ahead………we pulled off and YEAH…they had gasoline. And seeing as it was in the middle of the desert, I thought it was VERY kind of them to keep the price so affordable for folks like us that were too simple to have fueled up ahead of time. Regular unleaded was only $3.30, and super was a mere $3.80! So, after spending $80.00 to fill up….we were on our way.
The rest of the trip was uneventful. We had been told that the trip through the desert was boring and without scenic views…..however, we found it very interesting. There were amazing mountain views and rock formations to see most of the way. Even though I had been to Vegas a few times before….you can’t help but be impressed at how they built this huge modern city in the middle of the desert. And every time you turn around…there is another casino/hotel opening up. And when you walk into a lobby…the gaming tables and slot machines are ALL packed with people……its as if no matter how many they build, the demand will keep up.
The tackle show was just like every other tackle I’ve been too……..noisy, busy, and NOT my cup of tea. I endure the show so we can look for some new products to sell. We also take advantage of show specials for products that we are already selling. Other than that…..I don’t have much use for going there.
Scott
Sunday, July 17, 2005 11:52 AM CDT
*****NEW PHOTO IN THE ALBUM*****NEW PHOTO IN THE ALBUM*****
I just got the Tarpon photo uploaded into the photo album…….it is a very nice fish!
Things never seem to stay calm in the wonderful world of cancer. Another good friend of ours just had their daughter relapse within the past week or so. She was doing very well and we had hoped that she would never have to face this monster again…but sadly she is now facing a transplant.
The burden of this disease never seems to lift very far about the heads of those that are battling it.
Enjoy the new photo….I am leaving today for a business trip out west….I will be updating again next weekend.
Scott
Sunday, July 10, 2005 4:51 PM CDT
It was just brought to my attention that AGAIN I allowed too much time to pass between journal updates. Ooooops.!
Zachary returned safely from camp on Friday. He had a blast! He was very excited to relay all sorts of stories from camp, but most of all; he wanted to brag about slow dancing with a couple of different girls. (And unlike two years ago when he made up stories about that….THIS time he has a photo with a girl……go check out the photo album.)
I will soon also have the long awaited fishing trip photos……of the trout and the tarpon.
The scary news is that the one girl only lives about an hour away. He was already on the phone with her the same night they got back from camp. (I feel a headache coming on. I’m WAY too young to be a grandfather……they need to SLOW down.)
Just a thought………middle school is going to be interesting!
If you live in other parts of the country/world….I want to reassure everyone that hurricane Dennis missed us completely. It pretty much landed in the exact same spot as Ivan did last year. The Panhandle of Florida was still trying to recover from Ivan…and now they have to deal with this mess. Welcome to sunny Florida!
I’m convinced that The Home Depot has somehow secretly developed a weather machine and is influencing our storm patterns. Last year we had the four storms make landfall here in Florida….this year we have a major category 4 storm hit us earlier than just about any storm in history…..and it’s only early July! The Home Depot has sold about a gazillion sheets of plywood…..a billion generators……countless flashlights…..gas cans…..tarps.. I could go on and on….but their stock is going to skyrocket if this pace of storms keeps up over the next few months. (More conspiracy theories from your friendly neighborhood South Florida cookoo.)
Meanwhile…the general population down here is running and diving for their bomb shelters…..AND WE DON’T HAVE BASEMENTS IN FLORIDA! The news media is eating this up……they give us more updates than any human being could possibly use or respond to. “The storm now has sustained winds of 3,298 mph…….at those speeds, blades of grass will shoot out of your lawn, penetrate your walls, and slice through your body so easily that you will surely bleed out before you can hit the ground. If you somehow avoid the killer grass blades, walls of water 288 feet high will be working their way inshore, washing away any structure that is not secured in the Earth’s mantle. Killer tornadoes will DEFINITELY be spawning all over the place…wiping out what the killer waves have missed. Stay indoors and wait for our next update in 7 seconds after a word from our sponsor….The Home Depot.”
(It’s ALL about the ‘next’ update.)
I actually was able to cut the grass today…while Dennis was pounding the Panhandle. I was going to skip that one nasty chore of lawn maintenance, but I’ve come to the conclusion that waiting for the grass to somehow….get shorter on its own, was NOT working! So I did my duty and cleaned up the yard…..it looks “nice” again.
Scott
Tuesday, July 5, 2005 5:37 PM CDT
Zachary took off for camp on Saturday! We drove him down to West Palm Beach for the send-off party and then at approx. 11:00am, he boarded the bus with some of his friends and off they went. I was a little disappointed with all of the crying and blubbering, but enough about me and Rebecca! (Zachary couldn’t get away from us fast enough!)
After dropping him off, we enjoyed a quiet lunch out, and then we checked into a hotel for the weekend. (I had won a free stay at a local golf resort when I attended a charity golf tournament several months ago.) So we were pampered for three days. We went to a comedy club one night and had a blast. (A hypnotist/comedian did a great act.) The second night we enjoyed a nice dinner with some good friends, and then we watched a fireworks show. All in all it was a relaxing weekend.
YES! The hotel stay included two rounds of golf. I invited a friend down and we worked our way through a very tough course. (49 bunkers and 16/18 holes with water hazards.) I only lost 3 balls…..usually I lose about 15, and I shot a 118. Not bad for me, but I don’t imagine that Tiger Woods will be sweating me joining the tour any time soon.
I appreciate the comments on my “driving in the USA” journal entry. Obviously there are many parts of the country that have bad drivers. Since writing that entry, I have witnessed some amazingly brash/stupid drivers. I have seen innumerable drivers make right turns on red WITHOUT stopping! I have seen drivers change lanes with total disregard to traffic around them. The more I saw, the more I was convinced that most of these folks should have their licenses taken away. I think the deep, deep aggravation comes from the knowledge that I DON’T have the nerve to pull off the stunts that these other drivers do. I just know that if I EVER made a right on red without stopping, or sped, or rolled through a stop sign, or changed lanes without signaling…………SILENT BLACK HELICOPTERS WOULD DROP OUT OF THE SKY…….HEAVILY ARMED BLACK-CLAD SOLDIERS WOULD REPEL DOWN AND SURROUND MY CAR….AND I WOULD BE TAKEN AWAY FOR A VERY, VERY LONG TIME.
(That is just a theory…..but I’m pretty sure it is somewhat, if not totally, or partially….
………accurate.)
Zachary gets back from camp on Friday. We are praying that he is having a good time.
Scott
Wednesday, June 29, 2005 6:27 PM CDT
Three days and counting….until camp! Chemo seems to be going well. Rebecca has been keeping Zachary medicated pretty well with the Zofran all day to prevent nausea. At night, we give him the Benadryl to help him sleep. I emailed his doctor and informed him that we would NOT be using his hospital to perform the next MIBG scan. We haven’t heard back from his yet….but I imagine that it will provoke some sort of reaction. Hopefully he will be curious enough to make some calls and find out why they can’t seem to get things right!
But, enough of that boring medical talk. All I ever do is complain about medical personal and the mistakes that they make. So, for a change of pace, I have decided to choose another topic for this entry. Something completely off-topic.
THE PSYCHOLOGY OF DRIVING:
After 26 years of driving, I have come to realize that there are WAY too many bad drivers on our roads. And it’s not just their bad driving that is aggravating; it’s their lack of respect for logic that is becoming more and more frustrating.
Have you ever noticed the type of driver that races through yellow or newly red traffic lights? I see this phenomenon a lot here in Florida. These guys will NOT stop for a light unless there is traffic in front of them blocking the road. But the REALLY interesting fact about these geniuses is that when they DO stop for a light, they are almost always “jumping” off of the line when it turns green. Now, let’s take a moment to think about this. They run through red lights, and jump off of the line on greens. So, what happens when one of these idiots meets another one at the same intersection? Yeah…….BOOM!
Ok…let’s move on to high beam usage. When I was delivering pizza (many years ago….. in another lifetime), I had to complete a safe driving course. During it I learned an interesting thing about high beam usage. Many people are under the WRONG assumption that when you are traveling down a road at night, and an oncoming car has it’s high beam lights on, that the proper thing to do is flash your high beams to let them know that they need to disengage theirs. Well, this is bad. If you are on a two lane road, (one lane in either direction), and let’s say the speed limit is 45mph. The car coming towards you has blinded you with his/her high beams….so you reciprocate by blinding them with yours…..now you’ve got two cars….headed towards each other….with a combined speed of 90mph….with both drivers blind! (Great recipe for disaster.) The proper thing to do is to turn your headlights off quickly…and then back on. (At least that is what they taught us in the class.)
Parking lots are very interesting places….I imagine that a psychologist could make a living…or write a book about the thought processes of people in parking lots. Take for example the mall. You drive to the mall during a busy shopping season in search of a parking place. When the lot is crowded, you will gladly take a spot that is 3 or 4 aisles away from the entrance, and 30 or so spots back. BUT, you drive to a restaurant, and you get upset when you have to park in the back. The walking distance at the restaurant probably NEVER exceeds a mall spot that is 20 cars away from the door…but you are still not happy. Another mall phenomenon that is odd is driving etiquette. I see people that are clearly frustrated by slow walking shoppers that are returning to their cars. Or they don’t want to yield to pedestrians. These same folks are the ones that take their time when they leave the store/mall…..and walk right in front of moving cars.
How about red lights again? In many states you are permitted to make a right turn on a red light….AFTER stopping….and ONLY if the traffic is clear. Quite often I see very impatient folks that are laying on their horns because the car in front of them isn’t shooting into the intersection to make a right turn on red. Well, a right turn on red is a PRIVILEGE………NOT an OBLIGATION! BE PATIENT!
In Florida we now have an aggressive driving law. If you change lanes twice, without using your turn signal….they can ticket you. In south Florida….using your turn signal is a cardinal sin. It merely warns the other drivers that you are preparing to violate their sacred space and THAT provokes them to speed up and cut you off.
Another law that just got passed locally allows police to ticket cars that have a stereo system playing loudly enough to be heard 25ft. away. It will be interesting to see if they start enforcing this law.
I’m sure my ramblings about driving have bored many of you….but seeing as I am on the road three days each week……I figured that I would share my misery with you.
Scott
P.S. We’re still watching the weather……..it’s starting to look nasty!
Saturday, June 25, 2005 9:06 PM CDT
In response to Bo’s comment about me having orchestrated this whole controversy over my attitude towards medical personal……well…..I WISH I was clever enough to have come up with that one….but sadly NO. I was truly responding to what was written by someone else in the guest book. (And not that I would ever feel obligated to offer up some verification of that, but I have DEFINITIVE proof that I did NOT write that entry.) I don’t want to tip my hand just yet…….but thanks to a faithful follower of this page, I now have MUCH more information about who visits this page! (I suppose the argument could be made that I put someone up to it…..you know….writing the entry, but if you saw my proof, you would believe me that I was not involved.) In Bo’s defense….HE was probably trying to stir up the discussion on this………a valiant effort for sure…. But I’m already in hot water with some of the guests here………aren’t I always?
Moving on………..the weather is a funny thing…..especially here in Florida. YES, the storm is still brewing……..it is NOT going away………I’ll try to keep an eye on the Doppler 2000 for everyone.
Today was a fun day. Zachary and I joined one of my friends with his son for a kayak fishing morning. We went to our usual spots and had some good luck. Zachary was the angler of the day by far. Of the 6 species that we caught, he landed 4, including a 20” 3lb. sea trout. He also caught a nice sheepshead (that got away while we were getting ready to photograph it), a ton of catfish, and a jack. I caught a nice little snook, some catfish, and a ladyfish. Our friends caught catfish, ladyfish and jacks. So, overall, we had a blast. In fact, we had soooooo much fun…Zachary and I are planning on forgoing sleep again tomorrow to try our luck with another close friend. I am still working on finishing off the waterproof camera that now has the tarpon from last week, and the big trout from this week….once we get those photos developed….I’ll put them on the page in the photo album.
One week from today Zachary goes to camp. It will be his fourth time staying over alone at Boggy Creek. He loves that place!
Scott
P.S. Stay tuned for more fish stories.
Tuesday, June 21, 2005 7:24 PM CDT
Once again I feel obligated to ask that anyone reading this entry should first make sure they have read the past TWO journal entries. (In the big scheme of things, it probably won’t change the world if you don’t follow my directions, but you never know.)
We continue to be amazed and grateful for the outpouring of support and comments in the guest book. I hope you all haven’t permanently scared “A Friend” away. (I know that I CERTAINLY didn’t do anything to scare him away.)
After another semi-sleepless night, I have decided that I do NOT possess the mental toughness or ability to write journal entries without sarcasm and anger. There are just TOO many idiots out there that we have to deal with for me to bite my tongue.
More medical stories from the past few days:
Sunday morning Zachary and I went to the beach to look for seashells and to fish a little bit. I had to stop at our local pharmacy to pick up some drinks on the way to the beach. (I will refrain from naming the pharmacy, because I used to work for Walgreen’s…and I don’t want to tarnish their name.) Rebecca asked me to pick up her three prescriptions while I was there. Well, as luck would have it….the store opens before the pharmacy, and I couldn’t get them at 8:30am. So, on our way home….covered in sand….I drove into the drive thru that Walgreen’s has….(oops…did I type the name of the store?....darn….where is that ‘backspace’ key or ‘delete’ key when you need it?) Anyways……the young clerk got on the intercom and asked for the name…I gave him Rebecca’s name and he typed it into his computer. He reads his all-knowing screen and informs me that he only has one of the three…..”The other two were deleted out of the system because they sat for 7 days and you didn’t pick them up in time.” Hmmmm. Ok. I’ll play along…..I said: “When were they deleted?” “This morning….I did it.” Ok….
Another long pause…………and then I ask, “When were they filled?” “On the 12th….today is one week.” Ok………….(me again)..”but today is the 7th day….it’s only 10am…..you couldn’t wait until the end of the day?” “Sir……we wait 7 days……if you can sit for 10 minutes…I’ll have them refilled.” “Ok…..we’ll wait.” So, while I was sitting there….I decided to call Rebecca and let her know what we were doing. She immediately informs me that YES, she did call the prescriptions in 7 days ago…BUT…(there is ALWAYS a ‘but’ with us)….BUT, Walgreen’s (oops…I mean the anonymous pharmacy)….informed her that they needed to hear from the doctor’s office because the refills were too soon. So, she saw her doctor on Wednesday, and they neglected to call the pharmacy….so she called them on Thursday to remind them…..and they finally followed thru.......and then on Friday we got the automated call from Walgreen’s, (oops…I mean the nameless pharmacy) informing us that our scripts were finally ready. So, two days later I am sitting in the drive thru listening to some zit-faced punk who is telling me that because WE let the scripts sit for 7 days….they deleted them. Well….I got off of the phone with Rebecca and caught the attention of the clerk. He got on the intercom and I tried educating him as to the timetable concerning our scripts. He proceeded to argue with me……standing firm in defense of the pharmacy’s infinite wisdom….”I’m not lying to you…..these prescriptions were filled 7 days ago.” “I’m not doubting that they were filled 7 days ago….they could have been filled 100 days ago…but you wouldn’t release them to us until Friday….TWO days ago…..so why are they being deleted on Sunday?” Well…at this point the pharmacist noticed him arguing with me, so she decided to step in and set me straight. She turned off the intercom so she could get the clerk’s highly animated version of what was going on…..and then she got on the intercom and said, “I don’t see what the problem is sir…..we refilled the prescriptions for you.” My response was…”The problem is, you have me sitting here for 10 minutes and blame ME for not picking up my prescriptions on time…..we wanted to get them 7 days ago…..BUT YOU WOULDN’T LET US. The doctor’s office didn’t call you until Thursday, and you didn’t call us until FRIDAY!......Your system is flawed!” “Well sir….there is nothing I can do at the store level.” This is where I rolled my eyes………”I realize that you are not going to be able to fix this at the store level…I used to be in management with your company….I know how it works…..I am merely suggesting that you contact the pharmacy supervisor and let them know that they have a FLAW in their expensive computerized system…….you have two choices…..either, A). Don’t fill the prescription until you have gotten confirmation from the doctor’s office. Or B). Don’t start your magical 7-day time bomb until AFTER THE CUSTOMER IS ALLOWED TO PICK UP THE DRUGS!” She couldn’t find any flaw in my logic, so she agreed that the problem needed to be addressed. Lucky for me I still know several of the key managers and one of the more senior district managers……I’ll make some calls and see if I can’t light some fires.
Our other great medical adventure this week continues to be the instant 48 hour x-ray. Today was a full 24 hours since the instant x-ray was taken. Zachary’s sinuses have worsened…..and we are desperately trying to avoid a fever….and the trip to the hospital that goes along with it. Rebecca called the doctor’s office this morning to try and find out if we could start him on antibiotics….they told her to call back later in the day. I ended up making that call and I was lucky enough to speak with one of the more proactive folks at the doctor’s office. She was able to find the initial reading report and passed it onto the doctor…..Zachary does have an infection, so they called an antibiotic into the pharmacy for us to pick up. While she was speaking with me, I sort of mentioned that it was frustrating that the hospital was dragging it’s feet on something as important as this………she informed me that she had been trying all day to get the radiologist to read the film….at one point he said, “Why do you keep bugging me with this?” “Why don’t you chase another radiologist and get them to do it?” This coming from the head of the department. The same genius that read Zachary’s MIBG a month ago and wasn’t alarmed by the fact that it was a bad scan. I promised her that I would get right on this. It will be my new life mission to correct this problem. This idiot just declared war on kids with cancer and their families. She also informed me that they had another patient that had to wait a week to get an MRI read. (Well….it’s not like these kid’s lives are depending on these tests……I mean….we do them for fun……right?)
So, there you have it.
Scott
P.S. Any family that has had problems with this particular radiology dept. can contact us via email or phone…..I WILL be making calls and trying to right this wrong!
Monday, June 20, 2005 7:12 PM CDT
If you are reading this update and have NOT yet read the one dated yesterday, then you have walked headfirst into a raging controversy. I suggest that you STOP here, and go to the journal history so you will be properly prepared to interpret my ramblings and appreciate the “tone” of this entry!
(Why are you still reading this? GO BACK AND READ THE LAST ONE FIRST!)
Ok…..that is better…thank you!
When I woke up this morning a few hours before the alarm went off at 5:15am (a normal occurrence,) it dawned on me that “A Friend” may have intentionally posted a controversial guest book entry to elicit an interesting response from me. I have shared this theory with Rebecca and a few other close cancer friends…..and I have been assured that I am incorrect. The consensus is that “A Friend” believed that they were posting an entry that would serve to be constructive for me. We may never know. After reading the many, many outraged responses to my journal entry, I don’t imagine that “A Friend” will be owning up to their true identity any time soon. (I can’t say that I blame them……Leo from Russia sounded angry enough to jump on a plane and hunt them down.)
While I am thinking about it…I want to thank EVERYONE for their support and comments. It is always nice to see responses from all over the country (and world) to our little drama. Your guest book entries provide moral support, comic relief, and a welcome escape from the reality that IS our life.
In an effort to change my writing style to be more “grateful” and “appreciative” when writing about medical personal, I give you the following update.
(It will help to read the following update in a calm and quiet voice.)
Today was a beautiful day. Birds were singing, butterflies were fluttering and all was good in the world. Rebecca took Zachary down to West Palm Beach for his weekly doctor’s visit. They checked his counts and examined him. His nose has been stuffy for a few days, so they took particular interest in his blood counts. His ANC was over 4,000, and his WBC was about 8,000. The doctors were very clever to crack that mystery and determine that he probably has a sinus infection. (Remove ALL sarcasm from your tone………..be calm……and gentle in voice while reading this.) The doctor was KIND enough to order an x-ray. Rebecca and Zachary waited patiently for the hospital to take him in for the film. They took the x-ray and of course, they wont’ let you leave until they make sure the film is a good picture. Once they were satisfied, Rebecca asked a logical mother/parent question. “When will our doctor have the results?” (You see, if Zachary does have an infection…we obviously would like to get him on antibiotics as quickly as possible. There have been several kids that have gotten sinus infections recently….and many of them have ended up in the hospital with fevers….we are trying to avoid that.) The response from the x-ray tech was, “Well…..it usually takes 48 hours.” Hmmm….(Stay calm Scott…..”A Friend” is watching….don’t lose it…….don’t lose it……….put a spin on this to make the medical folks look caring and “good.”….you can do it Scott………pull yourself together…and MAKE this happen.)
So, we are VERY fortunate that our state of the art hospital has the know-how and technical capabilities to read an x-ray within 48 hours that was ready to read in 5 minutes. You can travel far and wide across this great land….but good luck finding a team of on-the-ball experts that can actually get you instant results in 48 hours! We are truly blessed. Besides…sinus infections and fevers are HIGHLY overrated. Staying on the cancer floor at the hospital is a welcome respite from the monotony of life at home without IV poles and nurses waking us up all night. If this 48 hour delay ends up allowing Zachary to develop a fever, I will surely write a “Thank You” note to the radiology staff for taking our son’s life and medical well-being to heart, and making our cancer children a priority.
Zachary and Rebecca got home in time for dinner. Zachary tried to eat, but the long ride home made him nauseous. He ended up getting pretty sick. But that is a GOOD thing….because I really needed to clean the ceilings and walls in the bathroom….so once again I feel we are blessed to have had projectile vomiting in our lives to help keep us on course and grounded in reality. (Was that a little TOO obvious?....I’m trying to be positive…really I am.)
So here we are…..the end of another journal entry. As I wrote earlier….everything is hunky dory in our world.
Scott
Sunday, June 19, 2005 7:49 PM CDT
Medical Update:
As I mentioned a few updates ago, Zachary is on a larger dose of chemotherapy. (The thinking there is that since he is tolerating it well, a larger dose may provide a larger benefit….and should (theoretically) be tolerated well…..since the lower dose has been. Well, Zachary has had quite a bit of nausea this week. He has gotten sick a few times….usually after car rides…..but overall he has been a trooper. We won’t know about his blood counts and how they have been affected until tomorrow.
Yesterday we had a really good time. Connor Moran Children’s Cancer Foundation has a connection with a very nice guy that takes kids fishing. Rebecca, Zachary and I drove to West Palm Beach and he met us at a marina that was very close to one of his fishing spots. After a very short ride, we were throwing live bait out and trying to entice some nice 16-25lb tarpon into biting. We ended up hooking into ten nice fish….and we landed 2. (Tarpon have a very hard mouth and provide an amazing fight…..they are very acrobatic….it is not uncommon to have a fish leap out of the water several times during a fight. Because of this, they can be very tricky to land.) We were using light tackle….so the fish had a fighting chance. Several broke off the line by swimming around pilings. We ended up enduring a major storm that blew through, but it didn’t dampen our enjoyment of the evening…it was a blast. When I get the pictures developed…I will post them in the gallery and let everyone know to look there.
Now, onto other news. I don’t usually respond to guest book entries in my journals, but a recent one caught my eye and provoked me to write some thoughts about it. Here is the exact text from the entry in question:
“I consider myself a friend; however....You never have a nice thing to say about a doctor or the medical field. Please stop for a minute and realize that without all these people that you so quickly ridicule you would not have your son this Father's Day. Maybe it's time to stop and deal with your pain another way.”
A Friend
FL USA - Sunday, June 19, 2005 10:17 AM CDT
So, there you have it……I am being chastised for being a curmudgeon that complains too much. Hmmmmm…..on the surface…..it’s tough to argue with that reasoning….I DO complain a lot. But, is it REALLY complaining….or am I just relaying some of the frustrations that we’ve had to endure over the past 5 years, 3 months, 4 days, 8 hours, 3 minutes, and 25 seconds…..?(Not that I’m counting or anything.) Gosh……….I can’t imagine NOT responding to this entry….so here goes.
Ok….first of all…..we ARE very grateful to the doctors that have helped us during our battle. If you go back and read ALL of my entries, you will find where I have given credit to those that have contributed to our successes. Unfortunately, there are many others that have hindered us or otherwise contributed to this nightmare by their actions or words. For example. The doctor that ran the transplant program where Zachary had his stem cell transplant should be commended for managing a program and staff that got us through a VERY difficult time in his treatment……BUT (and I do mean BUT), when Zachary relapsed, he was the first doctor that our local oncologist called to get advice for further treatment. His answer was, “Zachary has already had a transplant….why would you give him more chemotherapy? Let him go.” (That is pretty much an exact quote…I’ll never forget our local guy relaying that conversation to us.) Now, that was over three years ago…..had we listened to his “advice”….yesterday we would have been visiting Zachary’s gravesite…instead of fighting fish together in the river!
And how about the doctor in NYC? He is an amazing oncologist. His specialty is Neuroblastoma. When Zachary wasn’t eligible for his treatment protocol, he offered to put us on a different one…..the Arsenic Protocol. When I questioned him about it……he admitted that only nine kids had tried it…..7 had died quickly……one lasted a couple of months….and one last four or five…….(not the most exciting results a parent could hear.) But his group stands to receive big bucks by having kids on THEIR protocols. He couldn’t get us on the one that we wanted….the one that was producing interesting results….so he tried to KEEP us as a patient by offering up an alternative that even HE wasn’t excited about once questioned about it.
Our most recent problem with our local hospital and the radiologist screw up has turned into a MAJOR issue. Several families have been affected by this…….and it is completely unnecessary. If we hadn’t been in this battle for as long as we have….I could see “A Friend’s” point……..but WE KNOW BETTER. I may be getting old…but I can clearly remember a time when things were drastically different.
Our local hospital got MAJOR press by teaming up with the Nicholas Foundation when they “built” the new children’s hospital. But they didn’t build a hospital…..they renovated the old wing………..some of it is amazing….some of it sucks! I remember calling them and asking why the story in the newspaper stated that the oncology floor was going to be “Brand New”…..(we had heard rumors they were only going to redo the old floor.)……well…..all they did was redo the old floor…….new paint…new windows….new air systems….new floors and beds……but something got lost in the translation. One of our closest friends was on the floor this weekend….and they told us how it is now. We were there a few months ago….and we saw it for ourselves.
Because of the most recent screw-ups, we are now going to have to travel 3 hours across the state to get our next MIBG scans done….it will require a hotel stay over there…….and time away from work…….but it is the only way that we can assure ourselves of getting the kind of professional opinion that we DESERVE! Maybe I’m being a little bit picky….but isn’t it our son’s LIFE that we’re talking about? What level of care should we expect? Keep in mind….we have seen and experienced a level of care that does NOT seem to exist here locally anymore.
I don’t want “A Friend” to take this personally….or to feel like my tirade is directed at them…….I am merely defending my right to FREAK OUT each and every time the doctors, nurses, hospital staff….or ANY OTHER medical personal drops the ball when caring for my son.
I’ve always promised myself that I would never second guess the decisions we’ve made medically for Zachary. Looking back and doing that can be very destructive mentally….and it doesn’t accomplish anything. However….if I was to allow these injustices to take place without recourse or comment……I KNOW it would haunt me in the future. This IS my therapy. If you are looking for a loving…..soft…..cuddly……warm….and fuzzy site…then I am truly sorry…..this is NOT one. I guess those that get queasy or uncomfortable when reading these entries could email us privately…..and we will gladly respond with a much more tame and calm report. (You don’t seriously want me to put it up for a vote “A Friend”….do you?............I mean…..I will if you want me to…..but either way……this site is therapy for me……..if everyone stops reading it……..I’d probably STILL write the entries…..just to keep sane.)
Scott (The Ungrateful.)
Sunday, June 12, 2005 8:12 PM CDT
I was just reading back over my last journal entry and I realized that I neglected to mention that Zachary’s doctor has upped his chemotherapy dosage. As always, we are sort of floating out there in no-man’s land with our regimen. We are not on any official study or protocol…we are once again making things up as we go along. (A familiar theme in this household.)
So, when Rebecca took Zachary to the doctor’s office on Monday, she was told that they wanted to up the dose because, “He is tolerating the medicine well….so we should give him more.” (Interesting logic…..I guess it is no fun treating kids with cancer if you don’t get to make them puke once in a while.)
Naturally, Zachary got sick a few times this past week. He has needed more anti-nausea medicine than he had needed in the past………so we’re just singing and dancing in the streets.
Since we started back on chemo in February, Zachary has had to go to the doctor’s office for a check up at least once each week. It would seem that this trend has just recently sunk into his brain….tonight he mentioned a few times that “It seems like I’m at the doctor every other day.” (I’m sure it does.)
The doctor’s won’t prescribe the chemo if we don’t let them see Zachary at least once each week…….(I guess maybe they think we’ve got him locked in the basement, (there are no basements in Florida), and we’re secretly using his chemo medicines ourselves….you know….for the thrill of it.) (How much more hair could I possibly lose anyways.?)
So there you have it…….he hasn’t been feeling so great these past few days……and then you add to that a rainy weekend……and you get a lazy boring weekend where we mainly took it easy. Our big excitement today was trying out the new Marble Slab Creamery that just opened here in town. (Double dark chocolate with chocolate chips and melted fudge folded into it…….oh yeah……it was good.)
I’ve mostly recovered from my salmonella poisoning…..I have a follow up appointment this week……and Rebecca is just starting to fell a little bit better….she has been fighting a fever and low blood counts for several days now. (One of these days we will ALL be feeling good at the same time.)
Scott
P.S. The storm is getting closer…..hang on to your hats….(and NO, I am not referring to any weather….its a metaphor for something bigger that is brewing……….)
Thursday, June 9, 2005 6:51 PM CDT
Well, I only had to wait three days to get results from my lab tests that were taken on Monday. (I probably should have listed all of the possibilities and then set up some sort of pool for everyone to take chances with their guesses……..maybe not.)
SURVEY SAYS:
SALMONELLA
Ooooooh. (I guess eating all of that raw chicken and then licking those frogs, lizards and snakes turned out to be a BAD idea.)
Actually…..I have gone over in my head just about every food that I ate during vacation, and I can’t remember eating anything that most of our family didn’t join me in. So for now the mystery remains just that….mysterious. In the mean time……Rebecca has had a fever for a couple of days….so her doctor wants to get her tested……and, not wanting to be left out or outdone, Zachary’s doctor wants a sample from him to make sure no bugs are hiding in his body waiting to wreak havoc.
(You’ve gotta give us credit….we don’t live boring lives!)
Other than all of that….EVERYTHING IS GREAT!!!
Scott
P.S. A storm is brewing…….be prepared.
Sunday, June 5, 2005 6:51 PM CDT
Well, we are home from vacation. (Actually we got home around dinner time last night.) Getting together with family is always a good thing. Zachary got to hang out with his cousins all week, and the adults got to participate (w/ the kids) in a variety of activities…tennis, golf, fishing, walking, bike riding, soccer, video games, nice dinners, etc.
All in all it was a fun week.
Now, as with any “Finestone” update………I’m sure all of you are anxiously awaiting for the WHOLE story……….surely we had some drama this week……
Well….actually we did. One small bump in the road occurred on the last day, literally as we were preparing to leave. The homes in the neighborhood where we were staying are all rentals. They all have the same schedule…..Saturday thru Saturday. So, on Saturday mornings, the cleanup crews are arriving, and the families are all leaving. Well, we had four cars in our driveway, and three of the families were leaving a little earlier than we were. So, I pulled our car out of the driveway and parked it “safely” in the street (a private street with no thru traffic) so it would be out of the way….like the cleaning crew cars were. Well, evidently a family from two doors down was leaving, and while backing up over 100 yards (I still haven’t figured out why they didn’t use a driveway to turn around), the wife backed into our car. I heard the crash from inside our rental house, and went outside to be greeted by a very apologetic husband of a very embarrassed wife. We exchanged information…took digital photos……..and they went on their way…back to Oklahoma…..(I guess you folks from Oklahoma can vouch for how bad the drivers there are.) Luckily there wasn’t any damage that prevented us from driving the 6+ hours home. All of the damage appears to be on the left front fender. So, we will get some quotes and hopefully the family from Oklahoma will own up to their deeds and take responsibility for their actions.
The other “bump” in the road for us is still somewhat of a work in progress. I got a little sick a few days before the end of our vacation. At first it didn’t appear to be much of anything….just some stomach problems……but within a day or so I developed a symptom that caused me a little bit of alarm. Without going into any gory details, I will say that the consensus between my family doctor, (Yes…I called her), my dad (the retired doctor), and my mom, (the retired nurse)…is that I need a colonoscopy. (WOW…that sounds like a party!.....NOT) Unfortunately….the symptom that I eluded to has not abated……it has persisted…..so now Rebecca and I have had plenty of time to look up all of the nasty/wonderful diseases that could be haunting me. (It’s no fun to get sick if you don’t have at least a few days to torture yourself with the endless possibilities.) So, I have an appointment first thing tomorrow morning…….and hopefully I will be able to get some answers pretty quickly.
Scott
Thursday, May 26, 2005 9:05 PM CDT
You know….sometimes you go through life and you get to meet and interact with all sorts of people that come from a variety of different walks of life…….and I know that I have somewhat of a reputation for being cynical at times (maybe a little bit)…..but overall, I would like to believe that I am a fairly good judge of character.
(Where is all of this going?)
I’m thinking that the “doctor” (yes….I REALLY did use quotes there) that read Zachary’s most recent MIBG scan MUST have recently undergone a frontal lobotomy or some other major cranial surgery. I now have in my hands the typed report from that scan. It reads as follows:
Normal MIBG activity of the salivary glands is present. Multiple areas of accumulation of MIBG activity in the thoracolumbar spine region are less prominent than on the previous study. Abnormal area of activity in the left parietal bone also noted and slightly less prominent than on the previous study. Left acetabular activity has not re-appeared. Right acetabular activity persists. Activity in proximal femurs bilaterally persists and is less prominent than on the previous study.
IMPRESSION:
Multiple areas of MIBG activity involving the spine, pelvis, proximal femurs and skull as seen on the previous study with appearance of subtle decrease of nearly all areas of activity since the previous examination. The significance of this is uncertain and might possibly be related to technical factors as it is essentially a uniform decrease in all visualized regions. No other significant new finding is present.
Hmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm
Am I the only one that finds it somewhat odd that there is a “uniform” decrease in ALL areas? I mean…..I’m no statistician or expert in mathematical equations….but what exactly are the odds of that occurring? Now remember…we’re not talking about one or two or three or even six isolated sites…we’re talking about close to ten different locations that have consistently lit up over the past several scans. So, is more likely that A). All of Zachary’s sites have improved by EXACTLY the same amount?, or B). The scan is somehow flawed? (uptake not complete….or poor imaging).
Call me silly….but I’m gonna vote for B! (Not because I don’t have the capacity to accept good news when it is thrown at me…but because I believe in math…..and science and because I’m a pretty good judge of a duck when it waddles by me quacking and crapping like a duck!)
So, the next logical question is…….”Why didn’t the reporting doctor ask for another scan to verify the miraculous uniform improvement that he has found?”
I don’t believe this guy would know an MIBG scan if it fell off of the shelf and hit him on the head. I believe he has taken the path of least resistance and signed off on the scan so he wouldn’t (as chief of the dept.) have to deal with the fact that the hospital doesn’t have a radiologist that has experience reading these scans.
Having said (or written) all of that….it really doesn’t matter. HAD the doctor requested a second scan….I would have declined….gracefully…..(or not gracefully)…….(probably not gracefully)………we are not relying on these scans for any big decisions……so why torture Zachary with any more tests than need be? Sadly…there are several other families that rely heavily on these scans…..I don’t know how they faired with their last tests.
Graduation Day! (New photo in the album)
Today was graduation. Zachary made us very proud today……and I ALMOST made it through without crying….and then it happened…….
The principal had explained to everyone that there were four classes graduating. They would announce one teacher’s name, and then her children would stand up as a class….proceed to the side of the stage….and walk up as their name was called. There, they would receive their diploma from the principal, and then shake hands with all four fifth grade teachers, before proceeding back to their section. When all of the children in one class had finished….the parents, family and friends could applaud. (Seemed like a good plan.) (It even worked for the first two teachers.)
Then Zachary’s class was called up. Everything was going well….until they called “Zachary Finestone”. Evidently there were several teachers from other grade levels that were watching from the back….they started to cheer and applaud…..it became contagious…..(most of the parents and families know about Zachary and his battle.) From there it got pretty ugly….tears….whimpering……sobbing………I was very disappointed………(mainly because it was me)……then Zachary was working his way over to shake hands with the teachers….and Mrs. Aursland grabbed him and hugged him…while sobbing……it was quite a moment. The picture is in the album. All of the staff at Zachary’s school has been involved in helping us get to where we are today. Mrs. Aursland had Zachary last year, and for part of this year, so she has been through a lot with us.
Tomorrow we head out for vacation….a family reunion. I will update as often as I can….or when I feel like it.
Scott
Tuesday, May 24, 2005 6:39 PM CDT
As I was sitting down to write this journal entry I realized that we STILL haven’t received an official copy of the written report from the MIBG. (Rebecca will try tomorrow to get one………good luck with that.)
This is a big week for our family…..and I can’t believe that I haven’t written more about the upcoming event……but here goes……….
Thursday morning at 8:00am, Zachary Michael Kelly Finestone will graduate from elementary school and the fifth grade! Now, in most families, this is obviously an occasion to be celebrated for obvious reasons. It’s not every day your child finishes elementary school and moves on to middle school. For us, (and for reasons that should be fairly obvious) this is a big day. A BIG BIG DAY!
Rebecca and I look at each other and without saying a word, we telepathically transmit the same thought to each other……”How in the world did we ever get through five years, two months, 8 days and 9 hours of dealing with cancer to be blessed enough to have Zachary get to graduate with his class?”
I wish I could say that I’ve fought the “good fight” mentally and that I’ve been successful in avoiding the bad thoughts that haunt so many of us. I mean, you look at Zachary, and he’s got his hair……physically he looks wonderful…..he is asymptomatic….and his disease appears to be stable for the moment……but…….(that wonderful little three letter word ‘but’.)………..but……..each and every day I somehow break down mentally and allow myself to go to that dark place that too many of our friends have already had to visit. I guess it has something to do with the bittersweet aspect of ANY important event.
Why is it that I torture myself with those thoughts? I don’t know.
Why can’t I just enjoy what we have and not look too far into the future? I don’t know.
Why can’t I just accept that whatever plan God has in store for us is beyond my control? Once again….I do not know.
I’m sure lots of money…and many hours of therapy could get to the bottom of my psychosis, but I’m too busy living on the rollercoaster to jump off and try to figure out what makes it keep going.
I DO appreciate what we have!
I DO understand that we are truly blessed to have Zachary getting this high quality of life!
I DO know how to enjoy the moment, and the day!
I WILL thoroughly enjoy seeing him graduate on Thursday!
I WILL cry like a baby as I watch him up on that stage!
Scott
P.S. If you are local to us and want to see this event, let us know….I’m sure there is room for friends!
Tuesday, May 24, 2005 5:43 PM CDT
As I was sitting down to write this journal entry I realized that we STILL haven’t received an official copy of the written report from the MIBG. (Rebecca will try tomorrow to get one………good luck with that.)
This is a big week for our family…..and I can’t believe that I haven’t written more about the upcoming event……but here goes……….
Thursday morning at 8:00am, Zachary Michael Kelly Finestone will graduate from elementary school and the fifth grade! Now, in most families, this is obviously an occasion to be celebrated for obvious reasons. It’s not every day your child finishes elementary school and moves on to middle school. For us, (and for reasons that should be fairly obvious) this is a big day. A BIG BIG DAY!
Rebecca and I look at each other and without saying a word, we telepathically transmit the same thought to each other……”How in the world did we ever get through five years, two months, 8 days and 9 hours of dealing with cancer to be blessed enough to have Zachary get to graduate with his class?”
I wish I could say that I’ve fought the “good fight” mentally and that I’ve been successful in avoiding the bad thoughts that haunt so many of us. I mean, you look at Zachary, and he’s got his hair……physically he looks wonderful…..he is asymptomatic….and his disease appears to be stable for the moment……but…….(that wonderful little three letter word ‘but’.)………..but……..each and every day I somehow break down mentally and allow myself to go to that dark place that too many of our friends have already had to visit. I guess it has something to do with the bittersweet aspect of ANY important event.
Why is it that I torture myself with those thoughts? I don’t know.
Why can’t I just enjoy what we have and not look too far into the future? I don’t know.
Why can’t I just accept that whatever plan God has in store for us is beyond my control? Once again….I do not know.
I’m sure lots of money…and many hours of therapy could get to the bottom of my psychosis, but I’m too busy living on the rollercoaster to jump off and try to figure out what makes it keep going.
I DO appreciate what we have!
I DO understand that we are truly blessed to have Zachary getting this high quality of life!
I DO know how to enjoy the moment, and the day!
I WILL thoroughly enjoy seeing him graduate on Thursday!
I WILL cry like a baby as I watch him up on that stage!
Scott
P.S. If you are local to us and want to see this event, let us know….I’m sure there is room for friends!
Tuesday, May 17, 2005 6:47 PM CDT
Ish bibly oat-in-doat-in bobo a-deet-in-dot-in.
Deci-meanie, sola-meanie, ooh-wall-a-wall-a-meanie.
I’m glad I got that off of my chest.
Sorry that it took so long to get everyone the MIBG results, but I decided NOT to post the results until the hospital ACTUALLY READ THEM!!!!!
I know….you’re thinking…”That Scott sure is a picky guy……….actually DEMANDING that the scans his son took get read and produce results…..picky, picky, picky.”
Results:
Zachary’s condition appears to be stable and unchanged……or possibly slightly improved.
(Results Disclaimer.) The above technical and highly specific reading does not actually reflect the opinions of a qualified pediatric radiologist, or even a radiologist that is used to reading MIBG scans. Not having actually received a COPY OF THE BLESSED report, the author of this page took the liberty of quoting the reporting oncologist’s words conveyed in a phone conversation today when he said, “The radiologist said that Zachary’s condition appears to be either stable or slightly improved.”
(Further Disclaimer) The above mentioned ‘Results Disclaimer’ is in no way meant to belittle, disparage, tarnish, or otherwise make fun of the testing hospital’s ability to either scan a patient or to render an opinion. The hospital (hereinafter referred to as “The Nincompoops”) cannot expect to be held responsible for ANY results that it doesn’t actually provide to patients waiting for any such results. (Confused yet?)
(Further, Further Disclaimer) The above mentioned Nincompoops could gather all of their department heads, administrators, and executive staff into a room, and they STILL wouldn’t be able to muster 2 brain cells to rub together.
WHEW! (I’m glad I got THAT off of my chest.)
So, we haven’t actually SEEN a report…..but the quote that I typed above is accurate. Whether or not it is “accurate”, is a whole different story. (There is accuracy…and then there is accuracy.) I’m sure they have the best of intentions (HA). I’m sure they will correct this problem so it doesn’t happen again. (HA). I’m sure that as I write this they are working feverishly to make sure no other family has to endure this nonsense. (HAHAHA)
So…there you have it…..or not…depending on your perspective. We are working on a plan that will help us to avoid this craziness in the future. I will of course keep you all posted.
Scott
P.S. There is a new photo in the album from the Relay for Life.
Wednesday, May 11, 2005 6:03 PM CDT
Several weeks ago I wrote a journal entry about how we were going to lose our ONE radiologist that can read MIBG scans. Well, that time has come and gone……..he has moved onto bigger and better things. So, where does this leave us? Good question.
The two gentlemen that work in Nuclear Medicine have kept us up to date as these events have been unfolding. Evidently our hospital “shares” it’s radiologists with another local hospital. My understanding is that these two hospitals cover for each other to make sure that there is always someone on duty that can read scans and imaging results so decisions can be made for emergency patients. (Herein lies the problem.) MIBG results are almost NEVER emergency issues. We DO like to get our results in a timely manner, but instant results have never been on the table. My impression is that the radiologists that are covering our hospital are probably qualified to read normal scans and images, however, MIBG scans are specialized…..they are used for only a small portion of patients…..mostly pediatric. Hmmmm…..the OTHER local hospital doesn’t offer pediatric services……hmmmmmmm……….are their radiologists even QUALIFIED to read MIBG scans? I know that some hospitals have pediatric radiologists…..doctors that specialize in reading films for children. I have always been amazed that our hospital only had the one doctor that could read the MIBG scans……he was on vacation several months ago when Zachary got scanned…and we had to wait for him to return. Knowing this has me very leery of any radiologist from another non-pediatric hospital that is all of a sudden going to come in and be able to adequately read our scans.
On top of all of those concerns…….our radiologist always compared the current tests to the previous ones…..how is a doctor from a different hospital going to have access (time) to find/review those films? All very good questions……..I guess.
So, being the busy body that I am….I called the hospital today and tried to reach the new CEO..(the old one left several months ago). If the old one was still there…I would have just stopped in and marched into his office….like I have on several other occasions when there were issues that needed to be dealt with. I haven’t met this new guy yet. His secretary informed me that he had left for the day and that there was another administrator that was on duty and charged with handling any problems that came up. (So…now I’m a problem.) That administrator was in a meeting….I left my information with her secretary…..and course I never heard back from her.
Not being one to give up too easily…I called the oncologist’s office before they closed and was able to reach one of the doctors in the practice. After explaining the situation to her, she informed me that she believed there “Had to be a system in place to deal with the departure of the one radiologist that could read MIBG scans.” Unfortunately, she was unable to convey what exactly that plan was. She promised to look into it and get back to me tomorrow.
I am thoroughly convinced that we will NOT see or hear any MIBG results from today’s scan until next week…….make that LATE next week at best. (I hope that I am wrong.) I am also convinced that any results we receive will not be on par with the ones that we have received in the past.
Taking all of this into consideration…..I have absolutely NO idea as to how we are going to proceed. If we were on a study……relying on the results to make treatment decisions…I suppose we would have to start traveling to Ft. Myers to get scans done over there…..but seeing as how we are floating in a void of vast uncertainty…..I guess I’ll just take these results with a grain of salt. (If Zachary were having pain or other symptoms…we would need very accurate results to know if the disease is progressing. If he were somehow in remission again….we would need to know so we could suspend treatment. Anything in between…..and we’re stuck playing the chemo game…two weeks on…one week off…..two weeks on…..one week off………etc.)
Mother’s Day weekend was great. We spent it in Vero Beach with my two brothers, my aunt, and my parents. We were also celebrating my mother’s 70th birthday party. We had a couple of very nice dinners….and on Saturday night…one of their friends hosted a viewing of a very special video that my older brother put together for our mother. All-in-all….it was a great weekend. This weekend we have the annual ACC relay for life walk on Friday…..we are going fishing Saturday morning….we have another birthday party Saturday evening……and Sunday we have yet another birthday party….so our dance cards are full this weekend.
Scott
Tuesday, May 3, 2005 5:56 PM CDT
Zachary had a checkup yesterday and his counts were quite good. So, he was able to start the second five days of chemo for this round. Next week we are once again scheduled to have an MIBG scan (Oh joy!), so I will keep all of you posted as results come in.
Our little fifth grader is rapidly approaching his graduation from elementary school. (Somehow we never envisioned the scholastic decisions that we are now facing.) Zachary is currently eligible for a Florida State sponsored scholarship that allows him to attend certain private schools instead of public middle school. But, just like everything else in our lives….there are several “catches” to the scholarship to consider. First of all, there are those in our State government that are opposed to this type of scholarship being used at religious based private schools. (Public monies being used to promote religion.) I’m sure all of us could argue this point to the end of time, but I’m just NOT in the mood. So, if the State of Florida reverses its decision, we would be left holding the bag. Also, there is the issue of space availability to consider. The school that we are considering has a waiting list. They may be willing to work with us on that problem…because of Zachary’s partial attendance due to illnesses and testing. So, we have met with the private school to see what they have to offer, and it seems like the perfect setting. (Small class size, dedicated staff, close to home.) Today, Zachary had a field trip to the local public middle school, (1500 students) and got a tour of that campus. Rebecca and I are scheduled to meet with some of the staff next week….to discuss how they handle children like Zachary…and how some of the different scenarios with his attendance will affect him.
Once again….it is time for a Webster lesson. The word of the day is “Resolve.”
Resolve(v) To make a firm decision on something; to find a solution. To remain steadfast in one’s course of action. Determination.
Hmmmmmmm. (Why this word….why now?)
Well…..a long time ago in a galaxy far far away…..(ooops….that’s been used before.) I told the story already of how in late March I was reading the guest book and felt “challenged” by some entries that mentioned my annual April Fools pranks. As you already know, (some better than others), those entries motivated me to come up with THREE fake stories to show that I can still be the master of the April Fools prank. Well, being the insecure, neurotic, weak-minded, slightly off individual that I am…..I felt at the time that I did NOT want to take any chances that my Three stories might “fail”. So, I preempted them with ANOTHER fake story…..the letter found behind the picture. It has now been about five weeks since that little “gem” was born, and I am still getting emails and guest book entries offering advice and suggestions as to how to acquire more information about the letter, and how to sell it.
I’m sure that some sort of formal apology is in order….(although not likely), something to appease those of you that researched auctions…..faxed articles…….emailed ideas…..but I’ve never been too good at apologizing. Let’s just move on and accept that I will retain my title as the King of the Joke for another year. If any of you doubt my prowess, lest I remind you that I could easily have convinced you that I was mailing the letter to my “sister” in Alaska so that she could use it to line the cage of her Xenamur.
Scott
Friday, April 29, 2005 7:36 PM CDT
I know, I know….I haven’t updated in about a week…..get over it.
I would blame all of you for not signing the guestbook….that is usually my motivation to sit down and write something……goodness knows that there are plenty of you out there…….(proof of that was given when you all voted on my three stories.) And NO, I will never let you all live that one down!
Zachary started chemo on Monday…his counts jumped way up, so it was game time again. We are sticking with the program of giving him his meds right before bedtime so he can sleep off the bad side effects. (I think it is time for an English lesson.)
Webster’s give the following definition for the word ‘guilt.’
Guilt (n) – The condition or fact of having committed a crime or wrongdoing; the feeling of responsibility for having done something wrong.
Hmmmm….I don’t know about the ‘crime’ part…..but the whole “feeling of responsibility” part sounds VERY familiar.
Ok…let me explain. Somehow in the past two months, our little Zachary has gone from being an innocent naïve baby boy, to a hormone raging pre-teen, girl crazy, defiant lunatic. I know this metamorphosis seems unlikely, maybe even unthinkable, but take my word for it….it has happened. First came the demands for a phone in his room. Then came the calls to girls after school….before dinner…..during dinner…after dinner….before bedtime…………..you get the idea. So, the phone has become a very important commodity to young Zachary.
Rebecca and I have learned many child rearing lessons over the years…one of the most important is that when a child is acting up or not doing what he/she is told, you need to find what they care about….what motivates them…and then use that against them. Children of all ages have wants and desires…you just have to tap into those so you have something to hold over their heads.
This brings us to the guilt story. Zachary hates taking his chemo. (Who wouldn’t?) Occasionally he will give us some grief about taking his medicines…but usually he is good about it. Well, the other night, Zachary took his pre-meds at 8pm (normal) and went to watch TV in his room. It takes about an hour for those meds to prepare him for the chemo. Rebecca and I were watching a program in our room and didn’t think too much about what Zachary was doing. Well, as it turns out…he was falling into a deep, deep, deep…..(did I mention deep?) sleep. So, at 9pm when Rebecca went in to wake him…..she met some serious resistance. So, being the designated bad guy…I went into his room. I didn’t have much more luck. Unfortunately for Zachary, I had worked a long day, and had to get up early the next day…..so I didn’t have as much patience as I should have. After several minutes of giving him a chance to get out of bed….I started to threaten to take things away…..his ‘coma-like’ response was, “GIVE ME SOME TIME…I’LL GET UP IN A MINUTE.” This went on for a few more minutes until I got VERY impatient. I gave him a last warning….which he defiantly ignored…..and then I did the unthinkable…..I unplugged his phone and told him I was taking it away…..he yelled at me to give him more time…so I started to unplug all of the controllers to his X-Box………..I took all of my new-found electronic goodies and hid them in my closet. He got up in a huff….took his medicine….and disappeared into his room for the night.
(Here comes the guilt part.) The next morning I was gone by 5:30am. When Zachary woke up, he wandered into our room and asked Rebecca, “What happened to my phone…it’s not there this morning?” He didn’t remember any of it….he was just too tired to function or think straight. So, I of course will have to live with the shame of yelling at and punishing my tired, sick, exhausted little boy.
Scott
P.S. In response to the requests by email for a photo of the letter that I have been talking about, I have added it to the photo album. (My printer emailed me his scanned image of it, so it should be pretty clear.)
Thursday, April 21, 2005 8:10 PM CDT
Today was checkup day at the doctor’s office for Zachary. His ANC (blood counts) were slightly too low, so we won’t be starting this round of chemotherapy until early next week. (Hopefully Monday.) Zachary still feels great, and his doctor did a thorough examination…….finding him in good working order! He has grown 1” in the past month, (is that even possible?) and he has gained about two pounds. (THAT is entirely possible…I’ve seen him eat!). The doctor and I discussed future options, and we pretty much agreed that we are “stuck” with this current program for now. I am always trying to line up the next treatment plan…(knowing all too well that none of them will last forever.) The doctor said that there is another conference in October in Dallas and that he will be attending….hopefully there will be some productive discussions regarding “chronic neuroblastoma” kids. I emailed Zachary’s diagnosing doctor a few weeks ago to get his take on our current position in the wonderful world of cancer. He agrees that Zachary falls under the “chronic” label. There really doesn’t seem to be a whole lot of information about how long these kids can keep fighting off the disease. Most of the relapsed patients succumb in the first year. Zachary is now over three years out. The doctor did remind us (like we needed to hear it again) that none of the relapsed kids survive long term. Unfortunately there really isn’t a “good” treatment out there to turn to if/when our current medicines stop being effective. We are hoping to get at least enough time to allow for something new to come down the pike.
In the mean time…we know that we are very lucky to have Zachary feeling and looking great! If the weather holds up….we will be kayaking on Saturday to try and get a keeper Snook!
Last night the three of us attended a county function at a local park near home. Every year the school district honors the volunteers that excelled in their efforts at our local schools. Each school had selected a student, adult and senior volunteer of the year. And every school also had a business partner that had gone above and beyond in their efforts to help out. Rebecca was the adult volunteer of the year at Zachary’s school! So, she was called up to the podium to accept her certificate and gift from the school superintendent. Rebecca has put a lot of time and energy into helping out at Zachary’s school, so it is nice to have her efforts recognized!
I finally heard back from my printer friend about the mysterious letter. He got an email from an auction house that estimates the letter would fetch between $3,000.00 and $5,000.00 depending on how well it was promoted. (I guess finding a good group of “hungry” buyers is not the easiest thing for specialty items like this.) So, for now I guess we will just “sit” on it and see what other quotes we can get. My friend also has tried to contact a historical preservation society in Washington D.C. to see if there is any interest from any groups or organizations that deal with these types of letters.
Work has been very busy……the weather has mostly cooperated, so a lot of folks are fishing! Our new products are doing very well, and our old ones are too, so as long as we don’t get any major hurricanes this year…….we should have a good year!
Scott
Tuesday, April 12, 2005 6:42 PM CDT
Another busy week in the life of the Finestones.
We had some great weather here over the weekend. Zachary and I joined one of his good friends and his father for a kayak fishing trip Saturday morning. We caught some nice fish and saw some great sights……the water was great, the sun was shining…….it was a perfect day……almost. There is of course always a “Zachary” story that makes ANY outing just that much more interesting.
One of our stops in the kayaks was an island know as Boy Scout Island. It is a small sandy island with trees about 50-100 yards across. The island is quite popular with weekend day trippers and people looking to camp out. It is surrounded by a nice flat (shallow area good for fishing). We pulled up on one of the beaches and saw that there were three or four families that had camped out there the night before….they were cooking and playing in the water with their kids. One of my friends was with the group that had camped out, and he walked over and told us that there were about 30 high school kids that had partied and camped out on the other side of the island the night before.
Well, Zachary and his friend decided to do some exploring. The island is small enough, that one would think that there wouldn’t be any way that they could get themselves into too much trouble. (One would think.) Well, about ten minutes after embarking on their Lewis and Clark expedition, our two little adventurers returned with exciting news…they had been following a path and saw something in the sand…they started to dig and had found a wallet. My friend Mike, (the other father), looked at it and saw that it had a drivers license, social security card, a small amount of cash…and some credit cards. We decided that we could mail it to its rightful owner when we got home. (After the briefest of moments to absorb the story our two little adventurers had told us, we started to question exactly WHERE they had found the wallet.) Again they informed us that it was buried in the sand by itself. (B Y I T S E L F!) We again asked…”Are you sure there was nothing else around it.?” This question produced an interesting response that came from Zachary and his friend in alternating exclamations.
“Well…there were some clothes there…..and a radio…..and some food…..and a smoldering campfire.”
Hmmmmm…..now…..I’m no Sherlock Holmes……..in fact…….I don’t pretend to even be mildly intelligent…………but it seems to me that the ONLY thing they didn’t see was a body laying there on the ground. In fact, I asked them, “Did you have to move the body to get to the wallet?” (My humor was lost on their 11 year old intellects…they didn’t like that question.) Mike walked them back and put the wallet back where they had found it……….with the other items that obviously belonged to someone that would be returning…fully expecting to find their belongings where they had left them!
(I couldn’t make this stuff up if I HAD to!)…(Well…I guess I COULD make up stories…….BUT…this one is real!)
Scott
P.S. On Sunday I golfed in a charity tournament scramble. I lost 15 or 16 balls on the 18 holes. Now, this may not seem to be that bad...but let me assure you, it sucks! When you play a scramble...everyone drives or hits off of the tee, and then you get to choose which shot is the best, pick up the remaining three balls and hit from there. One would think that by utilizing this format, you would be much less prone to losing golf balls, because you have the advantage of hitting from a desirable location.....one would think!
Friday, April 8, 2005 7:10 AM CDT
After reading through the various guest book entries I can see that entering into the witness protection program has proven to be a very wise decision! (Especially now that the scary Hamilton Mafia is after us!) I would like to remind everyone that we are NOT in Wichita, Kansas, so don’t come here looking for us.
For those of you that feel “taken” by my antics, I feel you should shift your blame to those that wrote in the guest book BEFORE April 1 mentioning my previous antics….had they NOT spoiled it; I would have fooled you with a single story…..instead of three. (Hmmmm…that didn’t come across the way I wanted it to…….let me try again.)
My masterful deception over all of you would STILL have taken place, only in a different form, had there not been guest book entries predicting my “upcoming ruse.” (Hmmmm… I’m still thinking this isn’t going appease anyone…….apologies just aren’t my thing.)
I’m buying a Kevlar jacket and learning to run in a serpentine pattern whenever I’m outside!
Medical News:
Last night was the last one for Zachary and his chemo for this round. We are VERY lucky to have figured out that giving the medicine before bedtime is the key to his tolerating the drugs. He is using about 80% less of the anti-nausea drugs during the day….that translates to us that he is feeling much better. He has attended school several days and is much more active.
I want to send out a “Thank You” to Jane Pike for faxing over the copies from the article in Palm Beach Cottages & Gardens about collecting/buying/selling old letters. There was some very interesting information about how the values of these things change over time. Evidently some of the older Hollywood actors had letters that were once very sought after and quite valuable. As our population ages…the market of collectors that are seeking those letters shrinks, and the values can drop. The article also mentions letters by Eisenhower, Theodore Roosevelt, Jefferson, and even Washington. I have a trusted friend that owns a local printing shop….he has “taken” the letter from me, scanned it, and emailed it to the places that I requested. (I suck at manipulating files for email…it never seems to work correctly.) I have not heard anything definitive yet. One of the places that had asked to see the email is now asking us to send them the letter for further evaluation. (Hmmmmm…I was born at night…but not LAST NIGHT.) When there is more news on this…I will surely report it. For now though…..I’m as much in the dark as the rest of you. (Please…NO MORE emails asking for copies of the scanned image…I DON’T HAVE THEM!....My friend has taken care of this for me….I don’t even have one on my computer! He is a trusted friend that has always helped us with business printing issues, so I’m not worried about anything sinister happening to the letter.)
Today “sunny” Florida is windy and rainy. The good news is that the weather tomorrow is supposed to be great. So, if that happens, Zachary and I are going to join one of Zachary’s friends and his parents for a kayak fishing outing. We are looking forward to getting back out there and trying to land a couple of monster fish! Sunday is the annual Quantum House charity golf tournament. My partner and one of my customers and his wife are joining me at PGA National in WPB for the event. (I know that the witness protection folks would frown on me giving away my whereabouts at an upcoming event, but I’m QUITE confident that anyone hiding in the woods on the course, looking to take a shot at me….is in MUCH more danger of dying from an errant golf ball that I hit, than I am of getting hit by there gunshot! If you’ve golfed with me…then you know what I’m talking about…..if you HAVEN’T golfed with me…then consider yourself lucky.)
Scott
Tuesday, April 5, 2005 6:44 PM CDT
THE VOTING IS OFFICIALLY OVER!
I am VERY proud of all of you…….80 votes were cast and here the results:
Story # 3 came in third with 22 votes.
Story #1 came from behind to get second with 25 votes.
Story #2 kept its lead and won with 33 votes!
(People just can’t resist a good snake bite story.)
So, now I suppose that all of you are anxious to find out which story was true so that you can have your shot at winning some prizes…..well……I think it is important to FIRST remind everyone that its not whether you win or lose…but how you played the game. And ALL of you were VERY good about playing the game……..I got my 75 votes…so I’m happy. Now, I think it ALSO important to inform everyone that we have entered into the witness protection program….because ALL three stories are figments of my overactive imagination! So don’t come looking for us…we’ve blended in with middle America. (Don’t feel bad if you got suckered into believing me this year…it took me almost 10 WHOLE minutes to come up with those three whoppers.)
I knew almost three weeks ago that it was going to be impossible to fool everyone on April Fools Day…..there were already some entries in the guest book making reference to the fact that the day was approaching and folks were ready to debunk any tale I put into the journal entry. Bo Mathis guessed, “None of the above.”…so I guess he’s the winner by default…..although…I don’t know how fair his guess is, considering the fact that he knows me better than some of my own family members. And I’m QUITE sure he has heard EVERY interesting Zachary story that I have tucked away in my tiny brain. Besides…even if he tries to collect on the prize……the federal government has us tucked safely away in a small non-descript town not unlike Topeka, Kansas. (But of course NOT Topeka, Kansas…..that would be utterly STUPID of me to disclose our whereabouts…..wouldn’t it….or would that be devilishly clever?)
Anyways……I know some of you are going to respond with “I knew it….I just knew they were all fake.”…….That’s ok…..I KNOW I got some of you……..and I’m not going to embarrass you by naming you here….Christi, Juliet, A Zach Fan, Lisa, Gina, Sandi, Jeryl & Nikole, Jennifer, Beck, Rashelle, Susan, Joy, Lara, Karen, Sara, Stacey, Patty, Melissa, Kris, Terry, Kari, The Duckworth Family, Jenn, Dana, Debbie, Robin, Yamille, Katie, Dawn, Briana, Michele, Tina & Lance, Natalie, Shannon, Peggy, Sandra, Kathy, Sarah, Danny, Laure, Linda, Sharon, Amy Beth, Cheryl, Theresa, Marci, Angie, Heidi, Eva, Jadine, Lynn, Vicky, Jane, Tammy, Nancy, Kandi, Mary, Wayne, Anne, Lynda, Paige, Miss Judy, Ronnie, Christine, Betsy, Frannie, Carrie. (Gee…..I hope I didn’t forget anybody……)
So now, I have an entire year to think up my plan for next year………hopefully I'll remember early enough to plan something ahead so that you guys won’t be ready for it. (Spending ten whole minutes writing those three stories was very taxing on me this year…I usually don’t require that much thought to put one over on you folks….hmmmmmmm….I must be getting old.
Scott
Sunday, April 3, 2005 10:02 AM CDT
Ok…don’t get too excited…the results are NOT in yet. I had hoped to post the results today, but I am somewhat disappointed with the low voter turnout. (Sounds like an election year sound bite.) As of this morning, the results are as follows:
#1, (the suicide caller story) is trailing with only 9 votes.
#3, (the car story) is slightly ahead of that one with 12 votes.
#2, (the snake bite story) is in the lead with 16 votes.
If I can’t muster over 75 votes, I don’t know if I will EVER reveal which of these gems is the true story. (Probably an empty threat…..but you know me….I’m capable of anything.)
Medical update:
Zachary still feels great. I took him to the local pool hall last night (he has a pretty good eye and retains what he’s learned…two very important traits for pool players.) They added a bumper pool table, so we played several games of that too. Zachary loved it and begged me to buy one….we’ll see. I don’t see displacing the dining room table for a bumper pool table…..Rebecca may have something to say about this too.
I had ANOTHER major battle with the insurance company Friday. (Big surprise there.) Zachary is still covered by Cigna. You may remember that when we started on this new chemo regimen two months ago that we had to start using a mail-order pharmacy to avoid having to come up with thousands and thousands of dollars to get the medicines. Well, at the time, Cigna recommended Tel-Drug……(they are a division of Cigna…so it made sense………yeah right!) So anyways…about four weeks ago we had a major battle with Tel-Drug because they wouldn’t send Zachary’s Zofran without me giving them a credit card for over $700.00. After a long heated battle over the phone… I was able to convince them that we had already met our out of pocket maximum for the year and that we had actually overpaid and were due a refund. They were able to confirm this and sent the medicine.
Fast forward to Friday. Tel-Drug called Rebecca and said that we needed to pay about $400.00 to get Zachary’s chemo sent to us. Hmmmm…..de ja vu all over again! I called Tel-Drug and once again I had the battle of the century. The guy there was convinced that we had NOT met our deductible with Cigna…..he “knew” this, because he had just spoken with some genius at Cigna and they had confirmed it. Well, I asked him to look at Zachary’s file from several weeks ago……..then, I was able to show him that they had sent us about $700.00 worth of Zofran without any payment. (This confused him…..so of course he gave the most intelligent answer that he could come up with, “That must have been a mistake…you got lucky.”) HA! (Like they would have sent us ANYTHING without knowing how they were going to get paid.) After debunking THAT little gem, and backing him into a corner, he did the only thing he could do…..got a Cigna rep on the phone to back him up. Now, this lady from Cigna needs some psychiatric help. She is obviously suffering from multiple personalities. The first part of the conversation consisted mostly of her yelling at me trying to convince me that Cigna and Tel-Drug were in NO WAY related……and that they were TWO SEPARATE companies. She also tried to convince me that I had “two separate policies…one with Cigna and one with Tel-Drug,”….and that each had its own deductible that had to be dealt with. Well….this was ALL news to me. Wasn’t it Cigna that had sent me to Tel-Drug in the first place? Wasn’t it Cigna that had said….”you will be able to get the medicines you need without paying huge up front fees when you use Tel-Drug?” I tried using an analogy about Walgreens……comparing a pharmacy to a pharmacy…and showing how Cigna pays for the drugs…since they ARE the insurance company……(This was evidently over her head…..she didn’t like my analogy.) At one point I tried getting the Tel-Drug guy back into the fight…but he had hung up on us…..(even the Cigna witch was surprised at that one.) She finally calmed down and suggested that I get a supervisor over at Tel-Drug to make sure that I was set up correctly, because, “Tel-Drug has never billed Cigna for ANY of the drugs that we have received.” (That was a direct quote.) I did succeed at getting a supervisor on the phone….and she pulled up our account…(the same account that the earlier Tel-Drug idiot was looking at,)….and what did she find? We HAVE indeed met our annual out of pocket maximum! She also was looking at proof that Tel-Drug HAD indeed been billing Cigna all along. And the best comment came when I told her what the Cigna rep had said about their two companies being unrelated……she said, “WHAT?....not only are we a division of Cigna….they are our ONLY provider!” She promised to have the chemo sent to our doctor by Tuesday, and she also promised to make a notation in Zachary’s file/notes so this doesn’t happen for a third time when we start the next round. (I’m not holding my breath.)
I’ve put a new photo in the album. It shows both the front and the back of the picture that Rebecca and I got at that yard sale. It’s difficult to see on the front, but in the bottom corner there is a symbol or letter that looks like Japanese or Chinese……(further proof to me that the picture has nothing to do with the letter.) The back shows how the paper was torn…..I had to rip more to get the folded letter out. A couple of times when we were staying near the hospital for treatments, we spent time at City Place in West Palm Beach. It is an upscale shopping area that has some nice shops and restaurants. I remembered that they have a specialty shop there that sells very expensive letters written by famous people. Treasures Autograph Gallery. (I’ve seen a warrant signed by Wyatt Earp for over $30,000.00, some Clinton, Nixon, and LBJ letters, a movie contract signed by Bruce Lee, several musical legends, and an assortment of other cool items. I called over there Friday to see if they could refer us to someone that specializes in authenticating letters like this. The gentleman that answered the phone was very helpful. (David), he informed me that they could look into it, but that there wasn’t an outside company that they used for authenticating….they did their own research and appraising. He also wanted me to email a photo to him….but I have still been unable to get a photo showing enough detail of words and letters to be of any use. I am going to get it scanned this week and put onto disc…..then I will be able to email some of these folks.
We didn’t get to go kayaking this weekend…it was rainy yesterday and way too windy today….we may go out and fly our stunt kite later this afternoon.
Scott
Thursday, March 31, 2005 4:35 PM CST
Time is rapidly becoming my enemy! Just when I think I’ve got somewhat of a schedule in place that we keep me focused, all sorts of new distractions keep popping up. So, at the request/suggestion of Rebecca, I am going to give you all the three April Fools Day stories today. You will have all weekend to think about them and to decide which one is the real story. I will not have a chance to update before Sunday….(too much going on.) Remember the rules…..read the three stories….try to figure out which one actually took place….then sign the guest book with your guess. You must include a valid email in your guest book signature so I know that you are only voting once. The group of people that correctly determine (guess) which of the three stories is real will have their names placed into a hat (or bowl) and then a winner will be drawn. That person will receive some CSC items! (I’m rereading this last paragraph, looking for any obvious omissions of logic or detail….because I just KNOW that some of you will mess this up.) Remember….YOU ONLY GET TO GUESS ONCE! (I can hear the wheels spinning already…some of you have several family members and will use three different email accounts to cover all of the bases……I can’t really prevent this…BUT….I’m thinking that this is more of prestige thing……the ones that guess correctly will get recognized in my next journal entry Sunday or Monday.
Story #1:
Several years ago Zachary and Rebecca were home while I was at work. Rebecca went to take a shower and asked Zachary to answer the phone if anyone called. After Rebecca was out of earshot, the phone rang. Zachary answered it and found himself talking to a very upset and confused man. Evidently, this guy was trying to call a friend and dialed the wrong number. He was distraught over some personal problems and was “about to commit suicide.” Zachary, being only 8 years old at the time, asked innocently enough, “Who is this?” The man must have realized that something was wrong and asked back, “WHO is this?” Zachary didn’t know better, so he told him his name…..his FULL name. Out of sheer coincidence, the man had read about a benefit that had been held for Zachary the previous weekend. In his distraught state of mind, he still had the presence to ask if Zachary was the little boy with cancer. Zachary told him yes. At some point in the conversation, Zachary realized that the man was not “ok” and that he needed help. While the man was talking, Zachary covered up the mouthpiece, picked up Rebecca’s cell phone, and dialed 911. He explained that he was on the other phone with a man who was talking about killing himself. The dispatcher asked if we had caller ID, (which we do) and then had Zachary read off the phone number from where the man was calling from. She then coaxed Zachary into staying on the phone with the man while the police sped to his house. Zachary was able to keep him talking until they arrived, and the man was taken peacefully to a psychiatric hospital for evaluation.
Story #2:
When Zachary was 7 years old he attended a camp for children with cancer in northeastern Florida. The camp is located on about 300 acres in a beautiful part of the state. Zachary learned very early on that his favorite activity was archery. The archery range was located out in the woods about 50 yards behind the counselor’s cabins. On the fourth day of camp, he was walking with a group of campers and two counselors along the path to the range. He and another camper kept running ahead and picking up sticks and throwing them into the woods. While bending down to pick up a stick, a pigmy rattle snake bit into his shoe because he had almost stepped on it. Zachary immediately grabbed the snake in an effort to get it off of his shoe. He succeeded, only to have it turn and try to bite him on the hand. The one fang grazed his hand as he accidentally killed it when twisting its head. The counselors used their walkie-talkies to call for help. The on site doctor and nurses met the counselor’s running back with Zachary in their arms on the way to the clinic. Zachary ended up getting air-lifted to an Orlando hospital where they determined that the snake had emptied most of its venom into his sock, having bitten through the shoe. Luckily it had not touched his foot. His hand had a scratch from him twisting the head, and one very slight puncture wound. BUT, the fact that the venom was all in his shoe prevented any from getting into his blood stream. While all of this was happening, Rebecca and I were enjoying a night away from home and mini-vacation. At the time, I still had my Nextel phone, so the camp was unable to reach us. By the time we got the message and reached the camp director, Zachary was already back at camp and showing off his “wounds” to the other kids. The entire ordeal took about 7 hours.
Story #3:
About 3 years ago when Zachary was 8 years old, he got a crush on a girl from his class at school. He was constantly asking for permission to go over and play with her. One afternoon while I was at work, Rebecca had just finished some gardening and went to take a shower. (Hmmm…..familiar theme eh?) Zachary had just been denied the right to have a ride over to this girl’s house. While Rebecca was in the shower, Zachary took her car keys, grabbed two pillows to sit on, and headed out the door to the car. He successfully started the car and backed out of the driveway. He actually made it about two blocks from our house when a police officer saw him driving partially on someone’s front yard. The officer was able to get Zachary to pull over without killing any plants, animals or people. His daughter was in Zachary’s class, so he immediately knew who he was dealing with. (Lucky for us.) He locked the car and brought Zachary home to a frantic Rebecca who had just gotten out of the shower and was looking for Zachary. The officer didn’t write a report, because no harm was done. He had a long talk with Zachary and explained how dangerous his actions were. The “talk” seems to have worked; we have NOT had to deal with that since. (Knock on wood.)
Ok…there you have it. One of these gems is a true story. I was VERY careful NOT to use a story that has every appeared on here. In fact, I believe that all three took place before I was writing journal entries….so don’t bother looking in the history.
Good luck!
Scott
Wednesday, March 30, 2005 6:49 PM CST
Zachary had a few ups and downs today. He had a friend over, got some exercise and played some video games…so that was all good. Then he suddenly started not feeling so well. He ended up going to bed early. Hopefully tomorrow he will be feeling better, he is going to try and spend the day at school.
I appreciate all of the advice in the guest book regarding our controversial letter. One thoughtful person suggested taking a digital photo of it…(been there…tried that.) Unfortunately, the digital camera that we have is not good for taking close-up photos. It just can’t seem to show enough detail to make out the words….I’ve tried it several times. So, I’ve placed it into a plastic freezer bag to help protect it. Interestingly enough, the lady from the antique/collectible place that had dismissed Rebecca the other day called the house today and left a message. (Hmmmmm.) She didn’t show any enthusiasm in the message, but she made it clear that she was “Willing to look it over for us and possibly discuss a value.” (Do we have a sign on our foreheads reading “Born yesterday.”?) I remain hopeful that I can get it scanned locally, and then email the image to the friend of my old friend’s wife. Meanwhile, it seems to be safe and sound in its plastic bag…so I won’t be losing any sleep over what will become of it.
There is a kayak fishing tournament here this Saturday. Zachary and I are thinking about entering into it….but it is supposed to be quite windy. The nice thing about our area is that regardless of which direction the wind is coming from, there is usually a “protected” area to fish from on the leeward side of one land mass or another. If the wind is too strong, then it just becomes “unfun” (new word) to be out there paddling around trying to stay in one location. We’ll watch the weather and make a decision Friday afternoon before the captain’s meeting. Even if we opt out of the tournament, we can always go out and fish for fun!
Scott
Monday, March 28, 2005 7:46 PM CST
Ok….Mondays, Tuesdays and Wednesdays suck really badly for me now. We lost our salesman so my partner and I are having to cover all of the routes. So, if I don’t respond quickly to all of the comments in the guest book….please bear with me.
I guess I didn’t give enough details for some of you out there in computer land. Reading back over my entry I can see where it sounded odd. The picture that we bought is NOT from the era of President Fillmore. I doubt that it is over 25 or 30 years old…..and it DEFINITELY is NOT valuable! I will charge my digital camera and snap a photo of it for the page….it is nothing special. Rebecca had asked the people from the yard sale where the picture was from……they had purchased it with other “junk” from an estate sale 4 years earlier. They had gone to an estate auction/sale in search of bargains and found that all of the live auction items were way too expensive…..but….like most large estate sales…..there are sometimes odds and ends that the appraisers have no interest in that are sold in lots or boxes. Old books can sometimes be bought this way. We have a friend that has found some amazing old books this way. Anyways, the story behind the picture was boring…….it was in a large box with some other items that were not worthy of the live auction….these folks bought the box and had hung the picture on their wall. Now they are moving to a newer/larger house and were ridding themselves of their “junk”. The letter under the backing was NOT visible without removing more paper… which I did when I went to repair it.
The wife of my friend from college no longer works for the museum. (They emailed us back today.) She asked if I could scan the letter and email her with the file…she would forward it to a friend that still works there and try to find out if there is any significance to the note. I don’t have a scanner, so I won’t get a chance to do anything with it until at least Thursday when I am no longer on the road. While I was on the road today, Rebecca made some calls locally to a few antique/collectable shops and didn’t really get any useful information. The one lady that would give her the time of day downplayed the letter’s significance and said letters like that (from earlier presidents) are quite common and not too valuable unless the content is of historical importance. So, I’m not expecting to retire any time soon!
Other than thru Google, I have not been able to find out too much about that president or what was going on during his administration. (Once again…my history teacher is ‘tsk’ tsking’ right about now.)
Zachary’s chemo went well last night…he slept all night and did very well today.
Scott
P.S. Zachary is really nervous about which embarrassing true story will be mixed in among the three for Friday. He knows I don’t hold back with my stories and he’s getting to that age where image is everything.
Sunday, March 27, 2005 8:07 PM CST
AHHHHHHHHHH!
Somehow, I ended up doing my “favorite” pastime today….gardening! Unfortunately, there was some unfinished business in the back yard, so Rebecca and I tackled the weeds and remnants of debris from the hurricane. It turns out that when our tree fell over; one of the lines for our sprinkler system broke. (That was wonderful news.) I had already gone to Home Depot to buy some flowers for our front bed…..the sprinkler problem made me go back to get parts to make repairs. (I’m not the handiest person in the world…hopefully it will hold up.)
The only other “project” that I was supposed to tackle today was repairing and hanging the “new” painting for our bathroom. This turned into QUITE an interesting project. What should have been a quick and easy repair job, turned into a major mystery and puzzle. You see, NOTHING ever goes as planned when I’m involved.
All I had to do was remove the torn paper off of the back of the painting and tape on some newer paper to protect the back right? WRONG! As I was carefully removing the old brittle paper, I realized that underneath THAT paper was another piece of paper that had writing on it. Hmmmm. Being the curious sort of chap that I am, I carefully pulled back the remainder of the old stuff to reveal a hand-written letter dated 9/28/1850. (Oh yeah….it gets better.) So the letter is addressed to Daniel Webster (I’ve heard of that guy before somewhere) and it is from Millard Fillmore…(This guy doesn’t sound familiar.) (I’m sure if my high school teachers are reading this, they are VERY upset that I didn’t recognize the name of our 13th president.) (I had to Google the name to solve that little gem.) (Pathetic.) So anyways…..this Fillmore guy was evidently our president from 1850 thru 1853. Daniel Webster was his Secretary of State. (Google is better/easier than a classroom.) The letter discusses making California a “free state.” It also mentions a Stephen Douglas who was some senator from Illinois. (You history buffs must be laughing hysterically at me for not knowing these guys….or this history.) Anyways…..the letter looks like an original, but I’m certainly no expert. What on earth it was doing behind this particular painting is beyond me. So, I’ve emailed one of my college roommates for help on this. He married a gal that works on restoration and preservation of historical documents in D.C. for one of those important museums. (Again…forgive me….it’s been about a million years since I was in our capital to visit the museums.) Hopefully she will know what to do with this thing. Maybe there is a finder’s fee or something? (With my luck……no one else will remember that this Fillmore guy was a president…)
We started the chemo tonight, so I will keep everyone posted on that front….we’re hoping that our plan of giving the medicine before bedtime continues to work for us.
Ok…on to bigger and much more important issues. I’ve been following the guest book entries….and someone mentioned my history with April Fools day. SO, obviously I can’t create a new monkey this year, or find another long lost sister in Alaska. So, I have decided to try something different this time around. I am working on three “Zachary” stories for Friday (April Fools Day.) Two of them will be total and complete fabrications. One of them will be true! I will give everyone two days to read the three stories and then to decide which one they believe to be the true one. Using a valid email address in your guest book entry, you will each get one (and only one) guess as to which story is NOT fake. I will then put all of the correct guesses into a hat (or bowl) and choose a winner. The winner will get a Cancer Sucks Club t-shirt and hat! (It’s not the lottery, but I figured that it was time for a change.) So, get your BS detectors tuned and working, you’ll need them. We all know that Zachary is capable of just about anything! (The hard part is going to be finding an authentic Zachary story that I haven’t already conveyed here in the journal entries.)
Scott
Saturday, March 26, 2005 5:31 PM CST
Another weekend in paradise!
Medical update:
Zachary feels great! His checkup went well this week. His blood counts were acceptable, so we’ll be starting chemo tomorrow night. (Wednesday was supposed to be the start date, but we are “tweaking” his schedule over the next two months so we can travel for a family reunion/vacation and NOT have him on chemo.) I suppose in some sicko, demented, mentally deranged sort of way, NOT being on a protocol has its benefits. We get to have much more flexibility when it comes to his chemo schedule. So, there you have it….we start tomorrow night and go for five days before we get the two day break….then we go another five days before getting 9 days off.
Because of all of the traveling that we’ve been doing over the past several weekends, Zachary and I haven’t had a chance to use the kayak. Today was our long awaited return to the great outdoors. BUT, it came with a catch. I had promised Rebecca weeks ago that I would go yard-sale hunting with her. The bad part is, if you don’t get out there early, you miss all of the “good” deals. (There’s an oxymoron if I’ve EVER heard one.) Anyways, I bit the bullet and lived up to my end of the deal. Other than the thrill of the hunt, there really was only ONE thing that we were really looking for….a small framed picture for our one bathroom. (When a woman tells you that she wants to go shopping, but there is only ONE thing that she needs…….the flags should go up and the warning sirens should start going off in your head.) We made our way around the neighborhood and found some really useless stuff, some really gross stuff (clothing…that I wouldn’t wear on a bet), and a whole lot of “almost working” stuff. In the end, we DID indeed find a nice little framed painting that will work well with the décor (don’t ask) of our bathroom. Of course, as the old saying goes…..”No good deed goes unpunished.” So, the little framed painting that “works” with our décor has some damage to the backing, so I’ll have to try and fix that before hanging it on the wall. (Nothing is easy.)
The good news is that our kayaking/fishing outing was quite nice. We found a new small park with a little beach where we can put in at, and it gives us access to a really great fishing area. We paddled about a mile from that beach and got to Bird Island…(a local hot spot for Snook, Trout, Ladyfish, and other fun game.) As we got there, the baitfish were going wild and several Ladyfish were leaping out of the water. Zachary and I ended up hooking into about 9 of them and landing 4. They are a blast! They jump out of the water like Tarpon and put up a great fight. After that, we paddled around and Zachary got out and waded for a little bit. On the way back to the beach, I caught a nice Trout near some docks. Next Saturday there is a kayak fishing tournament, we may enter it and try our luck in that same area.
Scott
Sunday, March 20, 2005 7:57 PM CST
The F.A.U. Children’s Miracle Dance Marathon was a big success this weekend. This is the fifth year that they have held the event, and each year has surpassed the previous one for money raised. Last year they raised a little over $8,000.00, and this year the total topped $11,000.00! From only 12 dancers the first year, they have grown to over 50! Everyone involved made the dance a very special event! Zachary and the other children had a blast! Rebecca and I also had a lot of fun. We got to play a few of our favorite “ice breaker” games that we learned at Boggy Creek several years ago and we also participated in several other of the evening’s activities. Even though the nearest Children’s Miracle Network sponsored hospital is over 3 hours away, these students still manage to organize an event that produces a sizable donation!
Once again Zachary took home the hula hoop championship. He only had 5 opponents, and only one of those managed to make it somewhat interesting……until they started making them stand on one foot, hop, and pass a ball back and forth…..ALL skills that Zachary mastered years ago. I wish I could put streaming video on here of him hula hooping. He somehow manages to make that thing go around with what appears to be zero energy or movement. It truly is one of the wonders of the world!
Rebecca and I were discussing my last couple of journal entries, and apparently I neglected to convey a few interesting anecdotes from the past week or so. Both involve our wonderful hospital in West Palm Beach. The first occurred when Rebecca took Zachary in for his MIBG scan this past week. To get to nuclear medicine, one must first pass through the gates of hell……otherwise known as ADMISSIONS! I’m sure many of you out there have similar horror stories with your experiences in that particular department, but this one caught my attention.
Apparently, the hospital is in the process of upgrading their computer systems to make their entire operation more efficient.
NEW
UPGRADED
BETTER
EFFICIENT
STREAMLINED
These are all wonderful words, and in any other operation, I imagine that they would be attainable goals. Unfortunately, the NEW, UPGRADED, BETTER, MORE EFFICIENT AND STREAMLINED system was put together and compiled by humans. (Don’t you hate that humans are needed for these mundane and menial tasks?) (If only computers and machines could do all of that without our bumbling hands and minds.) Ahhhhh. If only! So anyways…….Rebecca was sitting there at admissions with the admissions lady…(that’s a technical title that reflects the prestige and status of the position she holds.)……and Rebecca noticed that they have this new and improved system. So, Rebecca is scanning over the new information and confirms that Zachary’s data appears to be in order. THEN, she finds the section about us. So, there I was, in black and white……..all of my personal data….and in the box labeled “Relationship to Patient” she sees the word, “Injured.” (Hmmmmm, an interesting way to describe my relationship with Zachary, but I’m not one to rush to judgment….maybe they know us better than I thought they did.) So, Rebecca moves onto the section dealing with her, and the box labeled, “Relationship to Patient”, it reads……”Unknown.” (Hmmmm…..”Mother” would have been a more appropriate word, but who are we to question the coding system that was surely devised by some genius in programming?) Being the thorough and ever-observant person she is, Rebecca suggested that “Father” and “Mother” MAY more easily facilitate an understanding of exactly HOW we relate to Mr. Zachary….sadly though, admissions lady does NOT have the authority or capability to correct these errors. (Translation: They will remain in his file until hell freezes over.)
The other story from the hospital is somewhat more alarming to us. When Zachary’s MIBG scan was finished on Wednesday, the nuclear medicine doctor informed Rebecca that there was good news and bad news. (This is usually NOT a good thing to hear from doctors or nurses.) The good news was that the scan would be read that same day and the results would be immediately forwarded to Zachary’s oncologist. (Hurray.) The bad news was that the head of the department, (also the only human on campus that can read an MIBG scan) had taken a better offer from another hospital and would be leaving at the end of the month! (De JA Vu…..all over again.) I am convinced that the MIBG scanning process is existing under a curse that is VERY effective.
Hopefully the hospital will find an experienced replacement very soon.
Scott
Friday, March 18, 2005 6:29 PM CST
I for one am glad that Crabgate is over and done with!
Medical News:
Zachary had an MIBG scan this week. (No special occasion…..just another doctor wanting to justify his existence.) The results are in and they are……
Four sites show stability…no new growth.
Two sites show some improvement.
The existing positive sites are still of great concern…they include the spine, pelvis, proximal femurs and skull. Having said that, (or typed it, if you’re being picky), we are pleased that the chemotherapy appears to have stopped the progression for now, and actually given us some slight improvement.
My overall opinion of this report is: If nothing else, we have once again “bought” more quality time! Zachary feels great! The pain in his side is gone! We have finally figured out the best formula for giving him his chemo……we wait until right before bedtime and then he just sleeps through the bad effects.
This weekend is the Children’s Miracle Network dance-a-thon at Florida Atlantic University in Boca Raton, Florida. We have attended this event since its inception four years ago. Zachary thoroughly enjoys the night of dancing….playing….and interacting with his friends and the college students. Rebecca and also look forward to this event. It has always provided us with memorable times.
Last weekend we were in Atlanta for a surprise birthday party for my aunt. It was a great weekend. All of the children from two sides of the family played together wonderfully and had a great time.
I was just gone for two days on business, so tonight Rebecca, Zachary and I went out for dinner. We have this nice place that serves both Chinese and Japanese cuisines. After dinner, they of course give you fortune cookies. Now, I’ve been eating and reading fortune cookies for many, many years……too many to enumerate. The one universal constant that ALL of us can rely on in life is the generic “applies to everyone” attitude that fortune cookie messages ALWAYS contain. (UNTIL NOW).
My fortune tonight read as follows:
“Your love of gardening will take on new meaning in your life.”
Hmmmmm. Let’s analyze this shall we? “Your love of gardening…” Well, I DO love gardening! Well, love may be a bit of an extreme word to use. I love everything about gardening…..EXCEPT the planting, mowing, raking, weeding, trimming, cutting, pruning, spraying, and ANY OTHER PART OF GARDENING THAT INVOLVES ACTUAL GARDENING!!!!!!
I want a refund. I want a do-over.
Oh well….I guess I’ll have to live with disappointment.
Scott
Thursday, March 10, 2005 6:43 AM CST
I don’t know what black hole some of you are living in…..but BACKFIN CRAB MEAT DOES EXIST!
If you can’t get back fin….USE ALL JUMBO LUMP!.....They’ll taste better!
The point of using the jumbo lump is to make the crab cake more full of LARGE JUMBO LUMPS OF CRAB MEAT!
I am now BEGGING for someone out there in computer land to post a guest book entry relaying their SUCCESS with this recipe so I don’t have to keep trying to convince everyone that the ingredients DO exist!
(You obviously have access to the internet if you are reading this…have any of you tried doing a search?) Tsk…..tsk…tsk…….(HAD you done one…you would have found an abundant amount of sources for the crab meat.)
(You tell a few little lies….maybe exaggerate about moving to Alaska and finding a long lost sister…….pull a couple of April fools jokes…..make up a new species of animals… and NO ONE believes you anymore!)
Zachary had a doctor’s office visit and examination yesterday. Overall his blood counts look good…….he has one mysterious pain that we haven’t figured out yet…..in his ribs on one side. Next week he is scheduled for another MIBG scan…..so hopefully that will eliminate this rib thing as anything cancer related. (He is still quite active…so he probably pulled a muscle or bumped it.)
Scott
Tuesday, March 8, 2005 5:34 PM CST
Amazing! I get all of these begging entries in the guest book asking for the recipe….promising to make them within days because EVERYONE has an urge to eat crab cakes….and NO ONE responds back to let me know what they thought of the recipe. I’m going on strike!
Scott
Thursday, March 3, 2005 4:15 PM CST
Well I for one am ashamed at the “begging” for crab cakes that has been taking place in the guest book. I mean seriously folks….you’d think that none of you have eaten real food in months! So, I guess it is unanimous; I will give you the recipe. Before I start typing it, I must warn you that unless you are independently wealthy, these little buggers will surely put a dent in you net worth. (And YES, I have read ALL of your guest book entries……these cakes are unbeatable. If you follow the easy recipe, you WILL be enjoying the finest crab cakes on the planet!)
INGREDIENTS:
3 EGGS
7 ½ TBSP. MAYONAISE
1 ½ TBSP. YELLOW MUSTARD
1 ½ TBSP. WORCHESTER SAUCE
2 LBS. JUMBO LUMP CRAB MEAT
1 LB. BACKFIN CRAB MEAT
1 ¾ CUPS BREAD CRUMBS
INSTRUCTIONS:
* MIX EVERYTHING EXCEPT CRAB AND BREAD CRUMBS.
* ADD CRAB
* ADD BREAD CRUMBS
* FORM CAKES (Makes 12 – 14 large cakes.)
* BAKE AT 350 DEGREES FOR 15 – 18 MINUTES ON A COOKIE SHEET.
SAUCE:
MAYONAISE & DIJON MUSTARD (MIXED TO TASTE).
Well, there you have it. I will be greatly disappointed if I don’t hear back from some of you after trying these.
Scott
Tuesday, March 1, 2005 6:41 PM CST
Once again I have allowed myself to lapse into a “non-journal writing mode.”
Why is it that everyone assumes that when I take a break, there is only bad news? I’ll admit that at times I don’t feel like reliving the minutia of our lives in these journal entries. That doesn’t mean that I WON’T, it just means that I’m lazy!
(Don’t be afraid to post comments in the guest book questioning my ability to manage this page or the information presented here. I don’t check the guest book everyday, but Rebecca sure does. She will surely inform me when the natives are getting restless.)
Zachary still feels pretty good. He is still unable to attend school. At times he has us believing that it is all an act to avoid attending classes, but then he’ll exhibit symptoms at times that are of NO advantage to his cause, convincing us that this reentry into the wonderful world of chemo has taken a toll on him. I remain hopeful that he will eventually get used to the poisons that we were making him drink down, allowing his body to operate on a somewhat “normal” basis throughout the day. (“….get used to the chemo…”)
(Whatever black hole or time/space continuum that we’ve entered into is truly bizarre.)
So, that is that. It is what it is. Such is life. (Feel free to insert any other cliché sayings here.)
Zachary’s birthday is today. 11 years old! WOW! (How many of you never thought we’d get to celebrate this one?)
Over the weekend we had a small pizza party with some of his friends. After that Zachary had a sleepover here with three of his friends. (What a great idea that was.) Staying up until midnight, trying to silence the whoopi cushions, getting the X-Box turned off, trying to stop the giggling, and then trying to remove the silly putty from the carpet & TV remote, all turned out to be fun activities for Rebecca and me.
Of all the weird and crazy things that have appeared on this web page over the past couple of years, I can’t remember ever putting a recipe on here. (Maybe I did…I just don’t remember doing it.) Anyways……there is a long and boring story about crab cakes that I really don’t want type on here…….so, these crab cakes are absolutely the best in the world. There really is NO room for discussion or debate here. I’ve eaten crab cakes, and usually they are mediocre at best. These are literally amazing! So, I need some feedback. Do any of you CARE about crab cakes? Am I wasting my time and typing fingers by even discussing it on here? We’ll let you vote and comment. If you think it is worthy of appearing in my next journal entry……let me know!
Scott
Wednesday, February 23, 2005 6:36 PM CST
Once again it appears as though I have dropped the “journal” ball and let an amazing 12 days go by without an update. (It’s slackers like me that make the rest of you look so good.)
Zachary finished round 1 of oral chemo on Sunday. Other than the debacle from day 1, he had a relatively uneventful first round. His appetite is not what we would like, and he lost a couple of pounds, but other than that he has felt pretty good. (Today’s appointment showed that he actually gained one of those pounds back.) The chemo has drained his energy levels, so during the day he has been too tired to attend school. We are working at getting him setup with dual enrollment so he can attend when he feels good enough. Saturday is Zachary’s birthday party. (His birthday isn’t actually until March 1st, but he will be on chemo next weekend and we wanted to give him the best chance to enjoy the party/weekend.)
Today Zachary received a soccer teddy bear from the Vermont Teddy Bear Company. The bear was a gift from the soccer team that Zachary’s team beat in the finals to take the championship. The front of the bear has “Zachary” on it, and the back has “Finestone” written on it. He loves it! It was a very thoughtful gift from a special group of families/kids that showed great maturity in their heartbreaking defeat. That game was the only game that they lost all season!
I have been thinking about the financial challenges that face families like ours and I have come up with a plan. I’m thinking that if every family in America were to send us $0.01 in an envelope, we would be in good shape. A stamp costs $0.37, so the entire cost per family would only be about $0.45 (don’t forget the envelope.) So, if only 100 million families stepped up to the plate, we would have a tidy $1,000,000.00! I don’t know what we would do with 100 million pennies, but I’m sure that rolling and cashing them in would become a full-time job.
(THAT LAST PARAGRAPH WAS A JOKE….DO NOT SEND US YOUR PENNIES!)
(ONCE AGAIN….DO NOT SEND ANY PENNIES…IT WAS A JOKE!)
(PLEASE DON’T MAKE ME REPEAT MYSELF……….I SAID IT WAS A JOKE!)
(OK…IF YOU ARE GOING TO BE STUBBORN…THEN WHY NOT SEND THE ENTIRE $100 MILLION DOLLARS AND GET IF OVER WITH?)
(ONCE AGAIN….I FEEL COMPELLED TO REMIND YOU THAT I CAN BE SOMEWHAT CYNICAL WITH MY HUMOR….DO NOT SEND $100 MILLION DOLLARS!)
Scott
P.S. Why do I get the feeling that the I.R.S. will be contacting me about some unusual deposits in the near future?
Thursday, February 10, 2005 6:46 PM CST
AHHHHHHHHHHHHHHHHHHHHHHHHHHHH
AHHHHHHHH.AHHHHHHHHHHHHH.AHHHH.
AHHHHHHHHHH.AHHHHHHHHH.AHHHHHHHH
AHHHHHHHHHHHHHHH.AHHHHHHHHH
(I’m glad I got that off of my chest.)
There is quite a bit to cover this evening, so bear with me. I guess I’ll start back in the hospital…..
Zachary has always had an affinity to the hospital food. Now, before all of you bobble heads out there start nodding in agreement with him, please hear me out. Of course I am not oblivious to the horrendous meals that can come out of the hospital kitchen. I’ve seen and tasted my share of them. Their pizza is bad……REALLY bad. I can remember days when someone walking by Zachary’s room with hospital pizza could trigger the gag reflex in him. The suckiness (is that really a word?) of their pizza is only surpassed by their spaghetti……and I could go on and on listing the meals that have haunted us for years. Now, HAVING said all of that. The hospital kitchen for the most part serves institutional food. That type of food can be found in a variety of “normal” settings. Many restaurants even use the same mass distributors when buying some of their foods. For instance, chicken strips (like long nuggets) are a pretty standard fare at the hospital. Our beloved Zachary has somehow developed a mindset that has him believing that ANYTHING that comes out of the hospital kitchen MUST be bad and unique to their kitchen. Hmmmm…….so I guess their lettuce for the salads is grown in some secret horrible dark basement garden on site. And I suppose if you looked long and hard enough, you would find the hospital chickens running around that are used in the strips.
(This logic did NOT sit well with Mr. Zachary. He was VERY happy and comfortable in his belief that ANY food from the kitchen there was tainted.) So, if you are wondering the halls of St. Mary’s and happen upon their cow pasture or pig pen….take a photo for Zachary……he would love to be vindicated on this one.
Zachary was finally released on Monday from the hospital. His spirits were greatly improved and he was eating and drinking….two requisites for release. Our doctor made some calls on Monday and started the process of fine tuning our new chemo protocol. Wednesday I got the call from the doctor’s office that one of the new chemo’s had already been called into our local pharmacy and was ready for pickup. Hmmmm. Our local pharmacy you say? (We have a weird conversion insurance policy on Zachary that has NO pharmacy benefits. So, any drugs we purchase must be paid for in full, up front. We then submit the claim to the insurance company and wait the requisite 35 – 60 years to be reimbursed our 20%. So, I called the pharmacy and indeed the drug was ready to be picked up. I asked what the total came to and was informed that the one drug would cost us……..$6,000.00! “Great, do you accept checks?...or perhaps promissory notes?....No?... well what if I cross my heart and hope to die if I don’t pay you back…will that work?”
Evidently the pharmacy staff doesn’t have the same sense of humor that I do in regards to prescriptions that cost $6,000.00. Who knew? I politely suggested that the pharmacy send the medicine back to wherever it came from. I called the doctor’s office and was able to get an ally in the office manager/nurse. She had some ideas on how to get us some medicine until we could sort out the mess. So, Wednesday afternoon at 3:45pm Zachary took his first dose of the two chemotherapies. Approximately two hours later, at 6pm the vomiting started. Zachary likes to stick to a firm schedule, so he made sure that he was vomiting every 15 minutes. We tried just about every anti-nausea drug on the planet, but nothing would stay down for long enough to get absorbed into his system. After several calls into the doctor’s after hours line, we made a decision that we needed some I.V. drugs to stop the nonsense. Driving the hour down to the hospital (and having him throw up 4 more times) didn’t seem like the logical thing to do. I suggested to the doctor that she call the local E.R. and let them know that we were coming in. She could have them give Zachary some I.V. Benadryl or other fast-acting calming drug. Well….the E.R. at our local hospital was a zoo. They were short staffed and overflowing with patients. We were there for about 45 minutes and about to give up when they called us back to be evaluated by a nurse. She was very nice and listened when I said…”I’m telling you…give my son some Benadryl and he will be fine.” The doctor walked in saw what was going on. He WAS going to let us drive down to St. Mary’s, but he heard my plea and agreed that they could easily help us. They whisked him back to a bed, expertly accessed his port, started an I.V., and administered the necessary drugs to stop the vomiting. That was at 11pm. He was instantly "cured." 1800cc’s of fluids and 6 hours later he finally peed for them. (He was very dehydrated.) So, Rebecca and I got to walk our rested and non-vomiting son out of the hospital E.R. at 6am……needless to say…we were tired.
Today, we pre-treated Zachary with two anti-nausea meds that have worked for him in the past. It is now 8pm and he is holding strong…..hopefully this trend will last throughout the night and allow us all to catch up some much needed sleep.
Scott
Monday, February 7, 2005 7:37 PM CST
Time sure does fly when you’re having fun! (So of course the last couple of days have dragged on for an eternity.)
What news would you like first, a medical update or soccer news? If I give soccer news first, some of you will be offended that I prioritized wrongly……and if I give medical news first, some of you will say that I am obsessing over the minutia of life on the cancer ward…..decisions….decisions……….hang on….I’m gonna flip a coin…..
……..Heads I start with medical news….Tails I start with soccer news…….
….and the winner is: Heads! (I actually flipped a cancer sucks button…..how appropriate.)
Ok. Zachary was finally released from the hospital today at around 2pm. He has not had a fever since Saturday, but yesterday he was in pretty bad shape…….definitely not any condition to be going home. He was VERY achy…pain in his joints, hands, ankles, side, etc. The doctor switched him from morphine to dillotan (spelling?), to take care of the pain. Last night he finally was able to sleep somewhat soundly. His blood tests all came back negative for the nasty bugs that they worry about our kids getting and his sinus and chest x-rays were all negative too. So, once they saw that he was up and eating/drinking and not in pain, they cut us loose.
The doctor has made some calls to neuroblastoma specialists to get some more opinions as to how much of the new chemo to give Zachary. We have chosen the one that I mentioned earlier, oral Irinotecan and oral temozolomide. We hope to have him on these new drugs by Thursday of this week. That would put us two weeks behind schedule (or without treatment.) I will keep everyone posted on this front as news develops.
Soccer news:
I ended up driving home to help coach the kids Saturday morning. Zachary was doing well at that point, (he hadn’t developed his laryngitis yet.) The team that had beaten us last week in the tournament played their game before us, and they won easily, 4 – 0. Our game was against the team that we had beaten last weekend that was previously undefeated. They were a very rough team that pushes a lot. (The parents for that team were given a yellow card last weekend for bad obnoxious behavior towards the referees.) Well, before the game, we were telling the kids the game plan, and one of them asked where Zachary was. The coach fielded that one and explained that Zachary was in the hospital and that he could not be there. I told them that Zachary’s message for them was simple….”Win!” Well, at that point the coach’s son spoke up and said, “Let’s win these games for Zachary!” All of them quickly agreed that they wanted to dedicate the games that day to Zachary. (I was very touched by this.)
The game started and the other team got up 2 – 0 on us pretty quickly. We had a bad penalty and gave up an easy goal. It was looking pretty bad, then they got a penalty from outside the box, and one of our good kickers shot it right over everyone’s heads into the goal. About 5 minutes after that we scored again. So at halftime it was 2 -2. The other coach was yelling at his kids like they were losing 10 – 0 and it was going to be the end of mankind if they lost. We were relaxing on the sideline getting excited about the second half…..we have almost always played better in the second half. We ended up scoring one more goal in the second half, but that was enough…..we shut them down and advanced to the afternoon championship game against the undefeated team that had already beaten us twice this season. I called and passed the good news onto Rebecca. Zachary was sleeping soundly, so I decided to stay up in Jensen Beach for the afternoon game that was only a couple of hours away.
Even though we were going up against the toughest team in the league, I was pleased to be playing them. The coach for this team is by far the most humble and kind coach of any that we have played against. His attitude carries over onto his team, because his kids play very fairly. Before and after every game, he always is approachable and friendly. (The way it should be in a kid’s league.) When he walked up to me before the game, he immediately asked how Zachary was doing and said that he and his family was saying a prayer for him. The game started and we got up 2 – 0 pretty quickly. We were very excited to get a lead on this tough team. We were able to hold the lead until halftime. The second half, we were going into the wind, and it was much tougher to get the ball off our side of the field. The other team scored pretty quickly, but with about 5 minutes left in the game, we scored again. With two minutes left, they scored…so the score was 3 – 2. They pulled their goalie and sent all of their players up to our side of the field in an effort to keep the pressure on us….it worked…..they had some excellent chances and almost tied it up….ALMOST! Our kids held on and won the championship match 3 – 2! There was a trophy presentation after the game, and I was able to bring the winner’s trophy along with a new soccer ball signed by all of his teammates down to the hospital Saturday evening. One of the parents videotaped both games and was kind enough to lend us the camera along with the cables needed to attach it to the TV set in the hospital, so Zachary was able to see the games. He even got to hear the kids dedicate the games to him!
With only one child to substitute in (the other teams had 3 – 4), our kids showed a lot of heart and determination by beating those two teams on Saturday. I know Zachary was disappointed that he couldn’t be there, but I also know that he is VERY proud to be a part of a team that finished first among 19 teams in our area…..many of which were very strong teams. They gave me a trophy like Zachary for being a coach. I already put it on the desk at work for everyone that comes to our business to see!
We are obviously hoping that we can avoid another fever or other problems. If we can, Saturday morning we are scheduled to be on a local radio show that is doing a fund raiser for the Children’s Miracle Network. After that we are having our soccer team celebration party.
I’m sure there are other adventures and stories that I planned on passing along with this update, but truthfully, my brain is not firing on all cylinders, so I am going to call it a night.
Scott
Friday, February 4, 2005 8:26 PM CST
Well, this is working out just great! (NOT).
The theme song for Gilligan’s Island keeps running through my head…..”Three hour tour…..three hour tour.”
We figured we’d just pop on in to the hospital, get rid of the fever…and pop on back out in two days. Oooppps! Zachary spiked a fever again last night and this morning, so we’re not going anywhere…anytime soon.
His cough and congestion have worsened, and now he is getting achy in his joints from the flu. None of this has anything remotely to do with cancer, but it sucks just the same.
AND, to make matters worse, we got back our MRI results from this week…….there is distinct progression in the hip and upper leg areas. The spine has either remained unchanged or slightly improved (I guess they’re flipping a coin on that one,) but the hip area is getting worse.
SO, here we are…..back in the hospital with a fever, facing protocol changes and more chemo……you gotta love cancer!
Zachary found out this evening that he has to go back onto chemo. His first question was, “Am I going to lose my hair again?” After hearing the answer, his second question was, “Can I get a wig?”……(Oh yeah….this is going to be just wonderful.)
I have racked my brain over and over again and I have failed to find the answer to the age-old question……”What is the BEST age for your child to have cancer?” (Somewhat of an oxymoron huh?) Well, I never said that subtlety was my specialty. What I mean is….when your child is very young, say 1 – 3 years of age…you really can’t explain what is going on to them……BUT, they don’t have to deal with the whole life and death thing. When they’re 4-7, they can at least understand you, but, they have started to figure out that cancer ain’t such a good thing to have. When they hit that 8 – 11 range, you can negotiate easier with them, (they value things more), but they are WAY too smart to hide the truth from. So, I guess there is NO good age for a child to have cancer….hmmmmm. who’d have thunk?
Ok…it’s late…..I’m making up words as I go along…….I’m somewhat pissed at the entirety of our situation……..it’s cold outside………I gotta wait another week to see the next episode of the O.C……things are tough!
Tomorrow I will probably be driving back up to Jensen Beach to help coach Zachary’s soccer team in the semi-finals……If Zachary is doing ok in the morning…..it seems like the right thing to do. I don’t know……..I’ve started second guessing myself lately…….I need to keep a coin in my pocket for these tough, life-altering decisions.
The plan of action for Zachary is more than likely going to involve oral Irinotecan (we did IV Irinotecan for 22 months ending last May) and oral temozolomide (a drug he has never had before.) (Anyone that corrects my spelling will be banned from here for life.) (I’m NOT writing the prescription….so BACK OFF.) The regimen involves 21 straight days of the temozolomide, and five days of Irinotecan, two days off, then five more days, then seven days off. Supposedly it is tolerated much better when taken orally…..time will tell.
Scott
Wednesday, February 2, 2005 4:39 PM CST
Well the soccer results are in from the weekend tournament. Zachary’s team finished 2nd overall!!! The top four teams move on to Saturday’s semi-finals, and the winners of those two games play in the finals Saturday afternoon. Zachary and his teammates are very proud to have finished second overall. They worked hard and beat some very good teams to achieve this. The team they play Saturday morning is the previously undefeated team that Zachary’s team beat LAST Saturday morning…..so hopefully that will work in our favor.
Now for the bad news………….this morning Zachary woke up with a 102 degree fever. He was very congested, hoarse, and coughing. Rebecca drove him to the emergency room this morning, and after a mere 7 hour wait there, they were finally admitted to the oncology unit this afternoon. His port is accessed, he has been receiving high dose antibiotics and other meds, and his fever has been normal since lunch time. If the fever stays away, he has a chance of being released on Friday. I haven’t spoken with the doctors yet, (I was on the road today,) but I am assuming that it will take an act of Congress for him to be cleared to play soccer on Saturday. So, if we do get out Friday, I will be there to coach, and he will be there to cheer his teammates on.
We have a room at Quantum House, so at night, one of us will sleep well. I’m told that the patient rooms now have more comfortable beds for parents, so we’ll see how that shapes up tonight. (My turn on night #1.)
We have our cell phones and we’re in room 2512, for those of you that feel like tracking us down.
Scott
Sunday, January 30, 2005 7:27 PM CST
The weekend is over and the soccer results are in!
Game #1 Saturday morning was against the #1 seeded team in the league. They had never lost and they had only allowed 6 goals throughout their 9 regular season games. After the first half we were down 2 -1, but our kids are second half players…..they came back and won 4 – 2! The afternoon game on Saturday was against another undefeated team that had beaten us earlier in the season. We tied them in the first half 1 -1, but in the second half we made some key mistakes and they ended up winning 4 -2. In order to advance to the semi-finals next weekend, we needed a win this morning in our final game. The team we were playing had given us our only other loss during the regular season. Today, our kids were very strong and we ended up winning 5 – 0! So, unless there is some bizarre mathematical equation that is being used to advance the teams, we should be in the semi-finals with three other teams next Saturday. The two games will consist of the #1 team playing the # 4 team, and the #2 team playing the #3 team. The winners of those two games will meet on Sunday for the championship. I will keep everyone posted. Needless to say, Zachary was very excited to be advancing through the playoffs into the championship weekend.
Zachary played well again throughout the weekend. He was very good on defense, making some key saves and clearing the ball well. He is a gutsy player!
Scott
Monday, January 24, 2005 5:46 PM CST
Brrrrrrrrrrrr.
“If it gets any colder…..I’m moving to Florida.”
(Unfortunately…..we’re already there.)
I know, I know……you northerners are laughing right now….you’re sitting there all bundled up in your -20 degree weather reading this and thinking…’what a sissy.’
Well you know what? I can live with that nickname. I grew up in Pittsburgh…..I moved AWAY from the cold so I wouldn’t have to wear turtle necks or sweat shirts, or gloves.
Well, we had an exciting soccer game yesterday. It was the last game of the regular season. The team we were playing was undefeated, 7-0-1. We were playing on their field. (There was a mild controversy there, the 12 and under field has smaller goals and is not as large as the 14 and under field…..well, this team has been playing their home games on the larger field with the larger goals…somewhat of an advantage for conditioning when playing on smaller fields.) (It’s a good thing this is NOT the competitive league……or I’d be…..you know….competitive about it.) Anyways. They had a smaller field/goal available but insisted on playing on the larger one. The wind was blowing about 25mph from one end to the other. When there is a strong wind, we always try to play into it during the first half, so our kids have an easier time of it the second half. And our kids always play better in the second half anyways.
The first half, we allowed two goals. We came close to scoring a few ourselves, but it just didn’t happen. During half time the kids were looking depressed, so I asked them. “Who owns the second half?” (That perked them right up!...They KNOW we own the second half and screamed it.) They came out of halftime and scored a goal almost immediately. Then, they scored another one. At that point…the other coach got a very nervous look on his face. Here they were, at home, undefeated, never having played a game where they were in jeopardy after half time….and it was now tied! Our kids kept the pressure on and scored again. Their energy level was amazing! The other team tied it up with a weak goal, but our kids bounced right back and scored two more. After that….they other team never got close to scoring. Our defense held strong and kept them away. Zachary played defense for all but the last 5 minutes…he turned a lot of plays around for his team. For the last 5 minutes, we put him on forward and gave him a chance to score. He had a few nice runs towards the goal and one breakaway where he got around the defensemen and made a perfect shot for the corner that was saved at the last second by their goalie. Even though he didn’t score, he ate up a TON of time by keeping the pressure down at their end of the field. What a great way to finish the regular season…beating that team. We have a round robin tournament next weekend where we have a good chance of playing them again. Now our kids will have that confidence going into the game!
Zachary was so proud to have played well and won that game.
Zachary remains pain-free….so that of course is a very good thing for us. The XBOX is his best friend right now…..he loves playing that thing. And, unlike the PS2, there are actually games that I don’t mind playing with him.
Scott
P.S. I would like to thank the Mathis family for driving all the way up from Boynton Beach to cheer Zachary on in his game. He was very grateful to have them there to see him play.
Wednesday, January 19, 2005 8:28 PM CST
WOW! WOW! WOW!
I asked for help, and YOU guys responded! One little request for assistance has turned into an amazing thing!
Even though I specifically mentioned that we were NOT looking for a freebie or handout, we have received 134 used systems and 68 new ones! All shipped conveniently to our door. In all of my searching online I have come to find out that these little puppies are QUITE the commodity. New systems are going for as much as $200.00, and used ones that are in good working order can fetch $120.00. So, here is what I have done.
I am selling the new ones online for $140.00, and the used ones for $100.00. All of them are already spoken for, so I have raked in a tidy $22,920.00 profit! So, we are buying tickets to travel over to the factory in Japan and have a CUSTOM, PERSONALIZED XBOX game system made for us while we are getting our PRIVATE tour of the facility. We’ll be staying in a top of the line exclusive resort and we’ll get to enjoy two full weeks in Japan! OH,…..did I mention we’ll be flying first class?
Ok….all of that was a lie…..well, all of that except the part about a lot of folks offering their help and ideas.
We would like to send out a HUGE thank you to Kim Mease and family for helping us get our Xbox game system. Not only did she track one down, she got the store to hold it, went to Western Union to receive the money for it, bought it, and shipped it! Thank you Kim!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Scott
Monday, January 17, 2005 6:13 PM CST
Zachary’s team won their game on Sunday 6 – 2. Once again they played a horrendous first half, followed up by an amazing second half. They were lucky to be leading at halftime 2 – 1. (They were playing like zombies.) Once the second half started, it was like a whole different team took the field. They were passing, kicking hard and scoring goals. With only one regular season game left, and a record of 6 – 2 – 0, they should have a pretty good placement in the tournament. (Not that we’re competitive or anything.)
I don’t remember the last time that I had to reach out to all of you and ask for help…….but I am in somewhat of a pickle, so here goes nothing!
Zachary was moving his Playstation 2 a few weeks ago and dropped it. After that, it only would play Playstation 1 games and not the newer ones. We checked with a friend who is pretty knowledgeable about these things, and evidently there are mirrors inside that can get knocked out of alignment. Once that happens, you can spend close to the cost of a new machine trying to repair it. So, we did something drastic. We told Zachary that if he traded it in (the EB Game stores will buy damaged units,) along with all of his Playstation 2 games, we would get him an XBOX system and start over. (Seemed like a good idea at the time……..)
This weekend we were going to buy the new unit………but we were very quickly educated as to the “national shortage” of game systems. I must have called every retailer within 60 miles…….and no luck. (I did find one Best Buy that claimed to have some in stock…..we drove up there only to find out that they had been out for months.) (Idiots!)
So, here I am with a ten year old gameless child. (Not the end of the world…..but a good sign that the apocalypse is coming.) WE ARE NOT ASKING FOR A FREE SYSTEM OR GIFT. (Please read that last sentence again before proceeding.)
Evidently the national shortage is worse here in Florida….many people lost their game systems in one of the four hurricanes that graced us with their presence last year, and now that they have their insurance checks…they have bought all of the game systems.
SO, if you live in the continental USA, AND you have a local store that has NEW XBOX game systems in stock…..PLEASE email or call us and let us know the price. If it is within reason, “I will gladly pay you Tuesday for a hamburger today.” (Seriously, I will pay you to ship one to us.)
Before everyone emails me writing, “Go online…there are a million stores selling them.” I have tried this…..the few companies that listed the units as “In Stock.”, changed their story when I spoke with them……evidently “In Stock” means, “We hope to receive some in the near future.” (Idiots.)
So, that is the story……once again….we are NOT looking for a freebie! Just some help in locating one of these game systems.
Scott
Saturday, January 15, 2005 8:48 AM CST
***TEST RESULTS ARE IN***
But first……a follow up to my previous HIPPA Law journal entry. I had to go back to the pharmacy for some things, and I didn’t know if Rebecca had gotten over there to pick up her top secret 2004 year-end information. So, being the inquisitive type, I meandered over to the pharmacy counter and asked the clerk (the same one that refused to hand over the info the last time) if Rebecca had picked it up yet. The clerk found the papers and said, “No, they are still here.” Then he proceeded to place them BACK into the bin for safe keeping. The pharmacist on duty must have sensed trouble brewing, because she inched her way closer to the counter to intervene between me and the soon to be berated clerk. I looked at her and asked what the logic was behind their handing me Rebecca’s drugs without Rebecca present, but NOT handing me a piece of paper that lists those same drugs. She shrugged and hid nicely behind the HIPPA Law that protects her right to be an imbecile. One of these days I’ll track down a government worker that is well-informed on HIPPA regulations and query them as to the logic behind this policy.
So, test results are in huh? I suppose all of you are anxiously awaiting for master Scott to decipher, analyze, interpret, decode, and explain the latest and greatest news from our beloved St. Mary’s hospital. Well, never being one that likes to disappoint, I WILL give you the results, but sadly, I don’t know if I possess enough brain cells to adequately figure out the mess that IS, our test results. Here is the text from those results…
“There are two, three, nine, fifteen, one areas of increased, decreased, somewhat more or less greater or less than the average of the whole, or half of the part that is centrally located to the left of the right side of the top bottom part of the middle portion of the bone that is connected to that other bone that is beneath and on top of the section that is completely covered but NOT surrounded by the area that is worse than the part that is better.”
Well, I hope that cleared it all up! NO? Why not? It seems fairly obvious to me that text clearly indicates what is going on with Zachary’s disease. You don’t see it? Hmmmmmm. Very curious indeed!
Ok…….I’m not going to enter the entire text from the report…..suffice it to say that one area looks slightly improved, however, there are several NEW areas that are lighting up and several old areas that look worse. The spine remains unchanged. Virtually all of the new and worsening activity is in the hips. (Pelvis, sacrum, iliac, acetabulum.) Three weeks from now we will be two months out from our baseline MRI scans, so we will repeat those and see more definitive imaging of what if anything has changed. The bone marrow testing is only one month old, and since that was clean, there doesn’t appear to be any reason to repeat those tests right now. The primary indicator for us remains to be Zachary’s lack of symptoms or pain. The doctor is a little nervous about Zachary playing soccer twice weekly, (apparently the hips are used quite frequently when kicking and running…..who knew?), but, seeing as Zachary thoroughly enjoys soccer, I don’t see taking that away from him. If he truly IS getting worse, then he may never be able to play again….I’m not going to rob him of this chance to enjoy his favorite activity.
Zachary has two more regular season games left, and then there is a tournament of a few games…depending on how his team does.
Scott
Sunday, January 9, 2005 9:04 AM CST
Let’s talk for a minute about the 1996 HIPPA law and how it serves to protect us from ourselves.
As most of you in the CSC already know, the HIPPA laws are there to protect US. If you were to do a search online and type in ‘HIPPA law’, you would see (as I did) that there is more information about this heralded legislation than any one person could possibly hope to read in a lifetime. And yet, we are all safer (right), and better off with it firmly in place. (That’s not your monitor leaking; it’s the sarcasm literally pouring out of your computer.)
I’m sure that if I were so inclined, I could probably spend many months analyzing and picking apart the HIPPA law and how it fails to “serve” us on many fronts. For now, I feel inspired to focus on just one of the flaws that I have found.
The one part of the HIPPA law that I want to discuss is the section that deals with privacy and your local pharmacy. Hmmmm. This must be an important issue. Our local chain is the largest in the country, and they are taking it QUITE seriously. Every January I submit a request to our pharmacy for a printout showing what we’ve spent in the previous year on drugs for each of us. This information is useful when filing tax returns. (When your medical expenses regularly exceed $12,000/yr. you DON’T want to take the standard deductions.) So, back to the pharmacy. Every year they cooperate and print out the handy dandy year-end totals for me to submit to the accountant. THIS year, I ran into a small roadblock when I went into retrieve the data. They handed over mine and Zachary’s without question, (I am his father after all,) however, when it came to Rebecca’s, the red flags went up, the alarms went off, and the HIPPA law book came crashing down on the counter. “YOU ARE NOT REBECCA!” (Thanks for clearing that one up…..I was confused about my identity until you sorted that out for me.) “ONLY REBECCA CAN RETRIEVE HER PERSONAL, PRIVATE, CONCEALED, SECRET, INDIVIDUAL, INFORMATION.” “YOU ARE NOT ALLOWED TO SEE WHAT DRUGS SHE HAS BEEN TAKING OR HOW MUCH SHE IS SPENDING ON MEDICATIONS….THAT IS HER PRIVATE BUSINESS.”
WOW…..what a relief! I’m SO glad the HIPPA laws were there, firmly in place to protect Rebecca from my sinister plan of saving her an extra trip to the pharmacy!
Wait a minute! (Light bulb going off in my head.) I just realized that we need to call the HIPPA police. There has been a major infraction of all that is holy and safe in the world of HIPPA. How could this have happened?
Just days two prior to my attempt to violate the sanctity of the HIPPA realm by picking up some sheets of paper, I was in that VERY same pharmacy, dealing with the VERY same pharmacy techs…….and what was I doing there you ask? I was paying for, and picking up Rebecca’s prescriptions. WHAT? Blasphemy! WHAT KIND OF AN OUTRAGE HAVE I INFLICTED UPON THE MEMORY OF THE HIPPA LAW FOUNDERS? I was allowed to pay for and RECEIVE her drugs? Where were the laws protecting Rebecca from her evil husband? I’m sure I spirited the drugs away to a private location where I could sit and read all about what medicines she was taking…..medicines for her lupus………….SECRET medicines for her health……………”OHHHHH THE HUMANITY OF IT ALL!!!!!!!!!!!!!!
I could have tampered with them…..I have could sold her secrets to the tabloids for millions of dollars. I could have RULED THE WORLD WITH THAT INFORMATION! “Well, good luck with that!” (For you Sponge Bob fans.)
So there you have it. I confess. I, Scott the deceiver, of sound state of mind, (it’s all relative), knowingly and willfully, purchased my wife’s prescriptions for her to save her a trip to the pharmacy, KNOWING full well, that two days later I could hide like a coward behind the ingenious HIPPA laws to force her to make an extra trip later on to the pharmacy to retrieve private information about medicines that I already knew about. (That was one LONG sentence…..let’s not ask our English teachers if it is punctuated properly please.)
I can only hope that the courts will go easy on me and take into consideration that while I may have MEANT well with my actions, I clearly caused irreparable harm to be inflicted upon the integrity of the HIPPA laws.
Scott
Thursday, January 6, 2005 4:58 PM CST
*****NEW PHOTO IN ALBUM*****
WOW!....Once again I have dropped the ball and let many many days go by without an update. I suppose I could get creative and blame it on the jet lag from returning from Memphis….(That 1 hour time difference can wreak havoc on your system.)
We had a wonderful trip to see my brothers and their families in Memphis. Wednesday night we got to see the Memphis Grizzlies beat the Boston Celtics in a come from behind thriller. Friday we were at the Autozone Liberty Bowl to see Louisville beat Boise St. The weather was nice, (some ice/snow for the first day, then sunny warmer weather,) and it was great to see family again.
We got home Sunday night, and as luck would have it, I must have picked up a bug on the flying flu machine (otherwise known as an airplane.) It started with a sore throat and has turned into a full blown sinus infection. Its been about four years since I’ve gotten sick, so you can imagine my misery……these cancer kids and lupus patients think THEY have it bad………my cold sucks!
Zachary had soccer practice last night, and he was right back in good form, playing well with lots of energy. This Sunday his team plays an undefeated team, and we’ll be short at least three players, so that should prove to be interesting.
We made the switch from cable TV to Direct TV. (NO, I do not want to hear about any horror stories from anyone.) Our system included a TiVo system…..this is quite the interesting device……..being able to digitally record your favorite shows is nice….but having a machine record it’s OWN selections based on what it THINKS you’d like is just a little too weird for me. I’m sure we’ll figure it out and get it doing what WE want it to do in the near future.
I’m way behind on fixing and updating the CSC web page…so bear with me on that one.
Scott
Monday, December 27, 2004 7:11 PM CST
Sorry (once again) for the lapse in journal entries……I guess I got caught up in enjoying the holidays and being lazy.
Most of the time with me, no news is indeed good news. I try not to keep the masses in suspense when I’ve got something important to report.
Zachary continues to feel great; he has not had any complaints for quite some time. Well, actually, that last statement isn’t entirely accurate…..he complains CONSTANTLY about a variety of things that are ALL non-medical. “There are too many rules.” “You make me clean up too much.” “It’s my room, if I want to keep it messy; it’s none of YOUR business.” “Why do YOU get to make all of the decisions?” ….and they go on and on and on.
Rebecca found an article yesterday that describes most of Zachary’s little quirks pretty well…..he is a TWEEN! Children in the 9 – 12 range. Lots of attitude…..lots of rebellion. You gotta love it!
Tomorrow we get to leave the house at 4am so we can catch an early flight to Memphis to visit my two brothers and their families. We will be there all week; all of us have been looking forward to this for several weeks.
We wish everyone out there in computerland a healthy and happy new year!
Scott
Sunday, December 19, 2004 7:38 PM CST
We had a really nice weekend…..and Zachary still feels great!
Saturday we fried a turkey (Cajun style,) and had a small part of the CSC over to enjoy some food and let the kids play. It turned out to be a nice day, and everyone had a good time. This morning, we had our annual extended family Christmas party/gift exchange. Lots more food and more fun! We had to leave that party early so Zachary could get to his soccer game on time. His team played really well today, they were able to inflict the mercy rule on the other team….final score…..9 – 0. (The mercy rule is supposed to be used when the goal difference is 8, but the referee wasn’t paying attention…and we got two quick goals.)
On a more serious note, we had a VERY big decision to deal with on Friday. It was a long time in the coming, and there was just NO way to avoid it. The public outcry was TOO great for us to go on any longer without addressing the issue.
Zachary got his hair cut!
I know, I know….the shock of this revelation must be overwhelming for some of you. But you’ll just have to pull yourselves together and find a way to get through these trying times. If it hadn’t been for the reports to the local authorities that a small sasquatch-like creature was roaming the neighborhood, we may have been able to postpone the trimming for a little while longer. In case you would like to see what his new do looks like, check out photo #3 in the album……it’s from the CSC gathering this weekend.
Zachary just finished another round of Fenretinide, so he will get to enjoy the next two weeks without any treatments or testing. (A TRUE holiday miracle for us.)
Scott
Monday, December 13, 2004 7:46 PM CST
My good friend Bo Mathis emailed me this interesting paragraph awhile ago. I was going to write my entire journal entry using this format, but I figured that those of you that were able to avoid insanity after reading my last journal entry would have been pushed over the edge of reason if I made you go through a long journal entry deciphering the words.
Aoccdrnig to a rscheearch at Cmabrigde Uinervtisy, it deosn't mttaer in
waht oredr the ltteers in a wrod are, the olny iprmoatnt tihng is taht the frist
and lsat ltteer be in the rghit pclae. The rset can be a taotl mses and you can
sitll raed it wouthit porbelm. Tihs is bcuseae the huamn mnid deos not raed
ervey lteter by istlef, but the wrod as a wlohe.
Amzanig huh?
I hope everyone was able to figure out what is typed up there…..(it’s really not that tough.)
Zachary still feels great. (I know that last comment may seem repetitive to some of you, but I feel that in light of our recent questionable results, it is important to reassure everyone up front, before I go off on some tangent.)
I was speaking to a nuclear radiologist last night (friend of the family) and he passed along an interesting tidbit of information that I had not previously heard. Evidently, patients that have had a bone marrow transplant, (stem cell or donor,) can have MRI’s and other radioactive based scans can be misleading because of a change at the molecular level of the marrow that follows a transplant. Hmmmmmm. This is something new to ponder. I mean, I’m not trying to deny that Zachary has bone disease……..but we were within 48 hours of giving him chemotherapy again based on some scans……and now we’re continuing with the current therapy….scratching our heads and trying to figure out how in the world his bone marrow is still clean. (Some of you are shaking your heads thinking….”Who cares WHY, take the results and run with them.”) Great advice. And if we weren’t SO ALONE in the process of choosing a course of action, I would find it easier to “run” with good news when it arrives. But sadly, we have been cast adrift with a boatload of other relapsed neuroblastoma families that are all trying to find their way across a sea of uncertainty.
I have been thinking about the new CSC web page and I have decided to make some rather drastic changes. Rather than have two separate pages for the Members and the Links….I think I will use the Members page as a Links page as well. If you click on a family’s name, it will take you to their family’s webpage (if one exists.) It won’t matter whether they have a child or adult web page, the link will be embedded in their name. If they are a member without a page, than there will be no link. The last page of the club will be used for news. I will try to update that weekly, once members start to submit stories or news via email. It may take me a few days to make the changes, so bear with me. As always….anyone with ideas on how to make the webpage better…..PLEASE keep them to yourself! (Just kidding…..email your ideas to email@mindyourowndamnbusiness.com
Just kidding again…email those to our family email.
Scott
Saturday, December 11, 2004 11:32 AM CST
You’ve all been very, very patient, so I will reward you with better news than I was anticipating. (Hmmm….that last line sort of paints a picture that would make it seem like everything is just fine in the world of Zachary.) (Hmmmm…..hmmmmm……now that LAST line repaints a new image of things NOT being so wonderful.) (Oh….this really sucks………..are things good, or bad?)
Well, my brain is on overload right now……I don’t believe that I can get through this update using my normal thought processes. (Idea to brain. Brain to words. Words to sentences. Sentences to fingers. Fingers to keyboard. Etc.) There is no more room in my brain to adequately process and relay all of the information that is flowing through it right now. SO, in the interest of preserving my sanity and saving room in my brain, I have come up with a plan to get all of this information to you without jeopardizing the integrity of my mind. I will not waste time with spaces between the words…..that ought to protect me enough to get through it! So here goes.
EveryoneknowsthatZacharyhashadseveralareasofbonelightinguplately.
Well,theMRI’sthatwedidshowedmetestaticdiseasewhichofcourseisnotagoodthing.
WeorderedthechemotherapywiththeplanofstartingonMonday,becauseweassusmed
(doctorsincluded)thathisdiseasewasprogressing.THENthedoctorfromCaliforniathat
isrunningourcurrentstudycalledandgaveheropinion.ShefeltthatitwaspossibleforZachary
to”lightup”ontheMIBG,butforthediseasetostillbesomewhatstable.Herrecommendation
wastowaitforthebonemarrowresultsbeforemakingadecisionaboutchemotherapy.Iwould
havebetthefarmthatthebonemarrowresultsweregoingtobebad,becauseeverythingwas
pointingusinthatdirection.Well,Iwaswrong.TheinitialreadonthebonemarrowshowsNO
signofdiseaseinthemarrow.WOW,soundsgreatright?Wellitisgreat,butwemustkeepinmind
thattheimagingtestinghasshowndiseaseinthebone.So,naturallyonewouldexpectthatthe
marrowwouldbeinfultratedaswell.Iguessnot.Thefirsthintthatsomethingwasamisscamein
themorningwhenZachary’slabworkcamebackshowingaverynormalbloodworkup.Ifthe
diseasewasrampantinhismarrow,youwouldexpecttoseeSOMEsignsoftroubleintheblood
work.SO,chemotherapyisnowonhold.Wearestartingourregularlyschedulednextroundof
Fenretinidetoday.Thatwilllastforoneweek,andthenwewillhaveourcustomarytwoweeksoff.
THATschedulewillgetusthroughDecember.(Nosmallmiraclethere.IwasreallyNOTwanting
topoisingZacharywithmorechemotherapyandruinpossiblyhislastChristmas)Sotheplanisto
retesthiminJanuaryandseewhattheMRIshows.Thatwillgiveusamonthbetweentests,which
shouldbeadequatetodetermineifthebonelesionsaregrowingornot.Zacharyremainspain-
free,whichofcoursemakesallofthesedecisionsmucheasiertotolerate.
If you think it is hard to read that paragraph, try typing that way!
Zachary’s California doctor once again made it very clear that there is NO cure for his disease. (Like I needed to hear THAT again.) (Why can’t they just let us live with ignorant bliss….and pretend like we will have him around forever?) She said, “It’s all about buying more time….and finding the treatment that will give you that time.” DUH!
For those of you in the cheap seats, I’ve put together a short list of recent comments by Zachary regarding his cancer, and his life. Just in case you forgot how much fun it is to have a child with cancer.
Before reading these, please keep in mind that we work with Zachary when discussing future protocols and treatments, but we do NOT tell him that he is going to die or that there is no hope. He has had several friends that have been lost to this disease.
“What did I do to make the cancer come back again?”
“The cancer is in my leg? But I’m playing soccer now. Will they have to cut my leg off?”
“I guess God doesn’t let us decide when we are going to die.”
“How many people will come to my funeral?”
“Will my friends be there?”
“Does it hurt to die?”
Nothing is more uplifting and cheerful than to have to hear your ten-year old ask these kinds of questions. I mean seriously, how many parents get to have these kind of discussions? (Someone needs to invent a vacuum machine that SUCKS these thoughts out of our children’s heads so they can go on with their business of being children WITHOUT having to deal with this crap!
Scott
P.S. Zachary still feels great! He still looks great! That is our crutch.
Saturday, December 11, 2004 11:30 AM CST
You’ve all been very, very patient, so I will reward you with better news than I was anticipating. (Hmmm….that last line sort of paints a picture that would make it seem like everything is just fine in the world of Zachary.) (Hmmmm…..hmmmmm……now that LAST line repaints a new image of things NOT being so wonderful.) (Oh….this really sucks………..are things good, or bad?)
Well, my brain is on overload right now……I don’t believe that I can get through this update using my normal thought processes. (Idea to brain. Brain to words. Words to sentences. Sentences to fingers. Fingers to keyboard. Etc.) There is no more room in my brain to adequately process and relay all of the information that is flowing through it right now. SO, in the interest of preserving my sanity and saving room in my brain, I have come up with a plan to get all of this information to you without jeopardizing the integrity of my mind. I will not waste time with spaces between the words…..that ought to protect me enough to get through it! So here goes.
EveryoneknowsthatZacharyhashadseveralareasofbonelightinguplately.
Well,theMRI’sthatwedidshowedmetestaticdiseasewhichofcourseisnotagoodthing.
WeorderedthechemotherapywiththeplanofstartingonMonday,becauseweassusmed
(doctorsincluded)thathisdiseasewasprogressing.THENthedoctorfromCaliforniathat
isrunningourcurrentstudycalledandgaveheropinion.ShefeltthatitwaspossibleforZachary
to”lightup”ontheMIBG,butforthediseasetostillbesomewhatstable.Herrecommendation
wastowaitforthebonemarrowresultsbeforemakingadecisionaboutchemotherapy.Iwould
havebetthefarmthatthebonemarrowresultsweregoingtobebad,becauseeverythingwas
pointingusinthatdirection.Well,Iwaswrong.TheinitialreadonthebonemarrowshowsNO
signofdiseaseinthemarrow.WOW,soundsgreatright?Wellitisgreat,butwemustkeepinmind
thattheimagingtestinghasshowndiseaseinthebone.So,naturallyonewouldexpectthatthe
marrowwouldbeinfultratedaswell.Iguessnot.Thefirsthintthatsomethingwasamisscamein
themorningwhenZachary’slabworkcamebackshowingaverynormalbloodworkup.Ifthe
diseasewasrampantinhismarrow,youwouldexpecttoseeSOMEsignsoftroubleintheblood
work.SO,chemotherapyisnowonhold.Wearestartingourregularlyschedulednextroundof
Fenretinidetoday.Thatwilllastforoneweek,andthenwewillhaveourcustomarytwoweeksoff.THATschedulewillgetusthroughDecember.(Nosmallmiraclethere.IwasreallyNOTwanting
topoisingZacharywithmorechemotherapyandruinpossiblyhislastChristmas)Sotheplanisto
retesthiminJanuaryandseewhattheMRIshows.Thatwillgiveusamonthbetweentests,which
shouldbeadequatetodetermineifthebonelesionsaregrowingornot.Zacharyremainspain-free,whichofcoursemakesallofthesedecisionsmucheasiertotolerate.
If you think it is hard to read that paragraph, try typing that way!
Zachary’s California doctor once again made it very clear that there is NO cure for his disease. (Like I needed to hear THAT again.) (Why can’t they just let us live with ignorant bliss….and pretend like we will have him around forever?) She said, “It’s all about buying more time….and finding the treatment that will give you that time.” DUH!
For those of you in the cheap seats, I’ve put together a short list of recent comments by Zachary regarding his cancer, and his life. Just in case you forgot how much fun it is to have a child with cancer.
Before reading these, please keep in mind that we work with Zachary when discussing future protocols and treatments, but we do NOT tell him that he is going to die or that there is no hope. He has had several friends that have been lost to this disease.
“What did I do to make the cancer come back again?”
“The cancer is in my leg? But I’m playing soccer now. Will they have to cut my leg off?”
“I guess God doesn’t let us decide when we are going to die.”
“How many people will come to my funeral?”
“Will my friends be there?”
“Does it hurt to die?”
Nothing is more uplifting and cheerful than to have to hear your ten-year old ask these kinds of questions. I mean seriously, how many parents get to have these kind of discussions? (Someone needs to invent a vacuum machine that SUCKS these thoughts out of our children’s heads so they can go on with their business of being children WITHOUT having to deal with this crap!
Scott
P.S. Zachary still feels great! He still looks great! That is our crutch.
Saturday, December 11, 2004 11:25 AM CST
You’ve all been very, very patient, so I will reward you with better news than I was anticipating. (Hmmm….that last line sort of paints a picture that would make it seem like everything is just fine in the world of Zachary.) (Hmmmm…..hmmmmm……now that LAST line repaints a new image of things NOT being so wonderful.) (Oh….this really sucks………..are things good, or bad?)
Well, my brain is on overload right now……I don’t believe that I can get through this update using my normal thought processes. (Idea to brain. Brain to words. Words to sentences. Sentences to fingers. Fingers to keyboard. Etc.) There is no more room in my brain to adequately process and relay all of the information that is flowing through it right now. SO, in the interest of preserving my sanity and saving room in my brain, I have come up with a plan to get all of this information to you without jeopardizing the integrity of my mind. I will not waste time with spaces between the words…..that ought to protect me enough to get through it! So here goes.
EveryoneknowsthatZacharyhashadseveralareasofbonelightinguplately.Well,theMRI’sthatwedidshowedmetestaticdiseasewhichofcourseisnotagoodthing.WeorderedthechemotherapywiththeplanofstartingonMonday,becauseweassusmed(doctorsincluded)thathisdiseasewasprogressing.THENthedoctorfromCaliforniathatisrunningourcurrentstudycalledandgaveheropinion.ShefeltthatitwaspossibleforZacharyto”lightup”ontheMIBG,butforthediseasetostillbesomewhatstable.Herrecommendationwastowaitforthebonemarrowresultsbeforemakingadecisionaboutchemotherapy.Iwouldhavebetthefarmthatthebonemarrowresultsweregoingtobebad,becauseeverythingwaspointingusinthatdirection.Well,Iwaswrong.TheinitialreadonthebonemarrowshowsNOsignofdiseaseinthemarrow.WOW,soundsgreatright?Wellitisgreat,butwemustkeepinmindthattheimagingtestinghasshowndiseaseinthebone.So,naturallyonewouldexpectthatthemarrowwouldbeinfultratedaswell.Iguessnot.ThefirsthintthatsomethingwasamisscameinthemorningwhenZachary’slabworkcamebackshowingaverynormalbloodworkup.Ifthediseasewasrampantinhismarrow,youwouldexpecttoseeSOMEsignsoftroubleinthebloodwork.SO,chemotherapyisnowonhold.WearestartingourregularlyschedulednextroundofFenretinidetoday.Thatwilllastforoneweek,andthenwewillhaveourcustomarytwoweeksoff.THATschedulewillgetusthroughDecember.(Nosmallmiraclethere.IwasreallyNOTwantingtopoisingZacharywithmorechemotherapyandruinpossiblyhislastChristmas)SotheplanistoretesthiminJanuaryandseewhattheMRIshows.Thatwillgiveusamonthbetweentests,whichshouldbeadequatetodetermineifthebonelesionsaregrowingornot.Zacharyremainspain-free,whichofcoursemakesallofthesedecisionsmucheasiertotolerate.
If you think it is hard to read that paragraph, try typing that way!
Zachary’s California doctor once again made it very clear that there is NO cure for his disease. (Like I needed to hear THAT again.) (Why can’t they just let us live with ignorant bliss….and pretend like we will have him around forever?) She said, “It’s all about buying more time….and finding the treatment that will give you that time.” DUH!
For those of you in the cheap seats, I’ve put together a short list of recent comments by Zachary regarding his cancer, and his life. Just in case you forgot how much fun it is to have a child with cancer.
Before reading these, please keep in mind that we work with Zachary when discussing future protocols and treatments, but we do NOT tell him that he is going to die or that there is no hope. He has had several friends that have been lost to this disease.
“What did I do to make the cancer come back again?”
“The cancer is in my leg? But I’m playing soccer now. Will they have to cut my leg off?”
“I guess God doesn’t let us decide when we are going to die.”
“How many people will come to my funeral?”
“Will my friends be there?”
“Does it hurt to die?”
Nothing is more uplifting and cheerful than to have to hear your ten-year old ask these kinds of questions. I mean seriously, how many parents get to have these kind of discussions? (Someone needs to invent a vacuum machine that SUCKS these thoughts out of our children’s heads so they can go on with their business of being children WITHOUT having to deal with this crap!
Scott
P.S. Zachary still feels great! He still looks great! That is our crutch.
Monday, December 6, 2004 8:40 PM CST
Well, I guess I left the journal entry regarding our bad scan results up for long enough! Everyone (mostly) has had a chance to read the news, absorb it, fret over it, post a guestbook entry regarding it, and now we’re all wondering what the next step is.
I spoke with our doctor today. We did an MRI this evening of the hip and femur, and on Thursday we will do the bone biopsy and bone marrow aspiration. Our goal is to have a plan of action in place by the end of this week, so we can start on a new treatment regimen next week. (Delays are not a good thing for us……..medically, or psychologically.)
Zachary remains to feel good. His soccer team won their game yesterday 9-2. He played very hard and had a few assists. Lately he has elevated his playing intensity to a level that has even impressed his coach. Soccer is definitely his favorite activity right now; hopefully he will be able to continue to play.
THANK YOU VISITORS!
This weekend we hit the 200,000 mark with visitors to this page. (I’m sure that Rebecca and I account for a few thousand of those….with checking the page a few times each day, but STILL, that’s a lot of people looking out for us…..so THANK YOU!
To commemorate that mark, (and to give myself another distraction), we have officially opened up a new web page. The Cancer Sucks Club now has an official place to go. The new site is: www.cancersucksclub.com
The home page gives some basic information about the club, the member’s page will list ANYONE that wishes to be included, (just email us with how you want to be appear.) The products page will show the t-shirts, buttons, and other products that will be available soon. The photo album will eventually have lots of pictures from members. And the links page is for anyone that wants to have their caringbridge (or other) family web page listed.
This site is definitely a work in progress. I am using a site that allows for “easy” setup and editing, so it may be quite some time before I can install fancier applications.
Any ideas or comments are welcome…..I believe this site belongs to all of us that are in this battle, so if you want to make suggestions, KEEP THEM TO YOURSELF!!!
Just kidding…..I’ll be open-minded. (Riiiiiiight.)
Scott
Thursday, December 2, 2004 5:41 PM CST
ANGER
DISAPPOINTMENT
FRUSTRATION
DISMAY
HOPELESSNESS
FEAR
DESPERATION
DESPONDENCY
I would go on forever, but I fear that my journal would take a dangerous turn towards the R-rated expletives that are flying across my brain and attempting to make their way through my arms, into my fingers, and eventually onto the keyboard!
In case any of you EVER had any doubts….CANCER SUCKS!
(New CSC t-shirt coming soon………”CANCER SUCKS…ALWAYS HAS…ALWAYS WILL.”)
This is the part of my journal entries where I usually start typing in the verbatim results of our testing….maybe on some level I’ve believed in the past that by giving all of you the exact text, it will somehow make it more real or “official” when I give you news.
Well folks….it doesn’t get MUCH more real than the bad news we got today. The MIBG scan showed that the spine area was stable…(not surprising since we only scanned 4 weeks ago,) however, there appear to be two new sites of activity. The left hip and the top of the left femur (the bone that runs from the knee to the hip.) So, why do we have new growth in just four weeks? That my friends is the million dollar question. Our doctor is going to contact the doctor in California that is in charge of the protocol that we are on, but I see this as a mere formality. The protocol verbiage is pretty clear to me…
”Any disease progression will preclude the continuation of the Fenretinide.” The plan right now is to do an MRI on Monday afternoon to get a “better” picture of the hip and femur, but, once again we have NOTHING to compare the images to, so I see them as more of a baseline scan for future use. I certainly DON’T want to continue on the Fenretinide for another month to wait for a repeat MRI if the consensus is that the drug is no longer effective on Zachary’s cancer.
I would say that we are back to square one, but that might give you the false sense of hope/security that comes with “square one” being a starting point of a journey. We are somewhere between square 198 and square 3,206. We are in a maze that seems to change as we try to navigate our way around. Just when it looks like we have found an exit, a new wall pops up and forces us to travel far away in another direction in search of an alternate “safe” way out. It is almost like trying to get from point A to point B using a system where you are only allowed to cut the remaining distance in half, once each day. Sure, it seems like you are getting closer….but you will never get there!
Zachary is still somehow pain-free. This is more than a saving grace for us right now. We are lamenting over this in ways that some of you have experienced, and hopefully many of you will never know.
I made it clear to the doctor today that we want to know the availability of the new protocol that we found BEFORE we get to the end of next week. I am fairly certain that the bone marrow report is not going to be kind to us. (This is not pessimism, it is reality.) Not being ready and wasting time are NOT an option that we want to entertain for even one second. I would love to be able to keep a positive outlook and “hope for the best”, but ignorance is NO longer bliss.
I have been haunted recently by horrific nightmares that wake me out of a dead sleep and keep me up when I should be resting. This is a new added bonus to the whole “cancer lifestyle” that we are enjoying. I don’t know if my friends that have been through this haven’t had this problem, or if they were just secretly praying that it wouldn’t happen to me, but needless to say, I had no warning that my brain (or lack thereof) would start to work against me. (It’s probably all of those Sponge Bob episodes……Barney and Sponge Bob are scary shows.)
Let’s summarize:
1). The scans were bad.
2). Cancer still SUCKS!
3). Zachary is pain-free.
4). Cancer sucks even more than when I wrote about it sucking back in #2.
5). We are looking into new therapies.
6). We have two days of testing next week. MRI on Monday, Bone marrow on Thurs.
7). I’ll be investing in toothpicks for my eyes…..if they ain’t closed…I won’t sleep and have nightmares. (Scary smart…..eh?)
Scott
Friday, November 26, 2004 3:48 PM CST
As I mentioned in yesterday’s journal entry, we had a wonderful Thanksgiving celebration with our family and friends. Zachary’s best friend was there, and some of our friends that we hadn’t seen in awhile were there too…..so it was a very nice day. Everyone was excited to see how tall and healthy Zachary looks now. His curly hair was a huge hit as well. We updated everyone with the news of our MIBG scan coming up next week, but the general consensus was that he looks great!
It’s funny (not really) how things can change for you on a dime. We thoroughly enjoyed yesterday….we are soooo very fortunate to have family and friends to spend the holidays with. Today Zachary woke up with back pain.
Now, before everyone starts to panic (like me), I will say that Zachary played pretty hard yesterday with his friends. Now, having said THAT, I also feel it is important to point out that Zachary has been playing soccer pretty hard for 3 weeks and he hasn’t had anything close to any pain.
Every family that I have ever spoken with gets nervous and jumpy before scans or testing. The fact that we are sitting on “bad” scans to begin with doesn’t help our state of mind. If the pain persists, we will be forced to very quickly come up with an alternative to the protocol that we are currently using. The few choices that I am aware of today involve chemotherapy. (Oral versus injected.) Either way, his hair won’t last very long. That will be hard on him.
This will be the fourth holiday season that we have gone through where we had a sickening feeling that it would be our last……..what I wouldn’t give to get through one without disaster looming over our heads like a giant vulture.
Scott
Thursday, November 25, 2004 6:41 PM CST
We of course fried a turkey today……there really is NO other way to eat a turkey. We didn’t burn the house down, and no one suffered any major calamities…..so, all-in-all I would say it was a great day.
In the guestbook I noticed that Leo asked, “Oh and BTW, what are the other four diseases?”
Well Leo, (and other curious folks), here are the details on Fifth’s disease…and the other four…..
“Years ago someone decided that it would make more sense to categorize the rash causing infectious diseases of children by number rather than name. And so, as the story goes, they attempted to rename measles, chicken pox, German measles, erythema infectiosum, and several other rashes that have been forgotten as "First Disease", "Second Disease", etc. Guess which one stuck? Of course, the one that you can't pronounce otherwise.”
Erythema infectiosum, also known as fifth disease and "slapped-cheek" disease, most commonly affects children between the ages of four and 10 years and is the most recognizable illness associated with parvovirus B19 infection. Although the clinical features of erythema infectiosum have been recognized for almost two centuries, not until the early 1980s was the link between this exanthem and parvovirus B19 established. It is now known that parvovirus B19 is the only etiologic agent of erythema infectiosum.
So, there you have it…….everything you needed to know….and some extra that you probably could have done without.
Scott
P.S. We redo the MIBG scan this week……and we should have results by Friday afternoon.
Sunday, November 21, 2004 1:05 PM CST
The news from the doctors has slowly begun to trickle in……..nothing has been written in stone, but for now….we are going to repeat the MIBG scan after this current round of Fenretinide. If the new MIBG scan shows anything suspicious, we will have to do a bone biopsy and bone marrow aspiration. (As to what “suspicious” means…..I have NO clue.)
Back here on Planet Earth, Zachary’s team won their soccer game yesterday 2 -1. It was at the hottest part of the day, but Zachary held up well. He loves to play soccer. He clearly doesn’t have the energy level of the other kids, but you would never know it if you saw his enthusiasm.
As far as my last journal entry goes……I would really like to put the whole “fart” incident behind me, (no pun intended)….(OK…a little pun intended.) I’m sure that everyone will soon forget about this embarrassing moment in the annuls of Scott.
(Riiiiiiiight.)
Scott
P.S. Fifth’s disease is still running rampant at Zachary’s school. They now have over 50 confirmed cases. This coming week will be the fifth that Zachary has missed in a row.
Monday, November 15, 2004 7:19 PM CST
No real news to report on the medical front. Zachary had a checkup today, but all they did was flush his port, give him his Pentamadine treatment, and check his counts. We have not heard back from California as to what our status is with our experimental drug. Hopefully they will allow us some time to further evaluate the tests to get a more accurate picture of where we stand.
Zachary had another soccer game this weekend. His team lost a nail-biter 3-2. Zachary was very upset because he got called for a handball in the “box”, and that set up a penalty shot for the other team. One of Zachary’s good friends was on the other team, and I was worried that Zachary would allow his dismay to carry over after the game, but he picked himself right back up and had that friend over later in the day to play. His energy level on the field is still several notches below the other kids, but he runs hard and gives it his best, so we are very proud of him.
Tonight we had to run some errands, so we ate dinner out and made an evening of it. It WOULD have been just another run-of-the-mill night out for the Finestone clan, BUT of course it ended in disgrace. We were at our final stop of the night, the $.99 store. Everything was going fine, we found the one item we were looking for, and Rebecca was in the checkout line paying for it. Zachary and I had wondered off to look at the table of books that were sitting “hidden” off to one side. No one was around, and I had a little bit of gas pain, so I did the honorable thing and let some out…..(I guess I thought that with only Zachary and I in that corner of the store…who would notice?)
WELL, let me tell you…..we were walking back to Rebecca and the cashier, and Zachary blurts out….”DAD…DID YOU FART?”
(Somewhere in the back of the store, a pin dropped….and I heard it.)
I of course replied, “NO….WHY WOULD YOU SAY THAT?” Then, when we were outside, I said, “OF COURSE I FARTED….YOU’RE SUPPOSED TO COVER ME.”
What kind of world do we live in when a father can’t even depend on his son to watch his back when he lets one loose in a public place?
Scott
Sunday, November 7, 2004 5:42 PM CST
Today was Zachary’s first soccer game with his new league. He is in a recreational 12 and under league that travels around our county playing other teams in the same age group. Zachary’s team won today 4 -2. Zachary is the youngest player on the team, with most of the children being in 6th grade. He definitely has less energy than the other kids, but that doesn’t keep him from having fun chasing after the ball. Other than some ankle pain from all of the running, he came out of the game fairly unscathed.
Because it is the weekend, we have not heard back from any of the doctors. I expect this week to be somewhat more productive on that front. (We’re not holding our breath or anything.)
Zachary got his report card on Friday. He received 2 A’s, 3 B’s, and 1 C. Considering all of the school that he has missed, we’re pleased. This coming week will be three straight weeks that we had to keep him out because of kids being diagnosed with fifth’s disease again late last week.
Scott
Thursday, November 4, 2004 6:30 PM CST
***NEW PHOTO***NEW PHOTO***NEW PHOTO***NEW PHOTO***
The picture of Zachary in his Halloween costume is now in the photo album. For those of you living outside of Florida, the humor in this costume may be lost on you. But for those of you that live here in the “windy” state, you will notice that there are real twigs and roof shingles that are attached to his torn and dirty shirt.
MEDICAL UPDATE:
I wish that more than four months would have passed before I had to sit here and think about how to write a journal entry where I lament about a possible progression of disease in Zachary. For the record: He looks and feels great! (I’m sure I need to find a way to put a lot more emphasis into those two things and a lot less emphasis on what the doctors are saying.) (Good luck).
As I mentioned in last week’s entry, the MIBG came back showing a possible increase of activity in Zachary’s spine. An MRI was scheduled and performed on Tuesday evening. Today the doctor called to inform us that the MRI showed an increase of tumor growth around his spine when compared with the last MRI. (This is where it gets interesting.) The last MRI to compare results with was taken in February of 2002 when Zachary relapsed. SO, how do we know if the tumor change is recent, or from a long time ago. We don’t. BUT, one would expect that at relapse his tumor load would have been at its greatest, before any chemotherapy treatment. If it grew after that, during treatment, then why didn’t his other tests show progression of disease? Big mystery. So, this is what we know. His current MIBG may be showing an increase of activity. His current MRI may be showing an increase of activity (if you accept the 2.5 year old scan as a baseline,) AND his current urine numbers are elevated. OH, did I forget to mention that already? Sorry. (Ahem.) His current urine levels are elevated.
HVA: Normal range is 4 – 15. Last time he tested at 18. This time it is 27.
VMA: Normal range is 2 – 11. Last time he tested at 4.5. This time it is 7.3.
So, the HVA which WAS close to being within range has gone up 50%.
The VMA which WAS well within range went up 60% but is STILL within range.
(Let us all remember that these ARE urine numbers…..in my mind they remain about as reliable as tarot card or tea leaf reading.)
BUT, to be perfectly fair with the doctors that spend soooo much time examining Zachary’s urine, it is hard to refute the three tests when looked at together. STILL, there remains the chance that the new isotope is reading differently, the MRI is showing tumor size that changed a long time ago, and the urine is jumping because of a banana or some artificial coloring in his food. At least one of the doctors agrees with me that it is hasty thinking at best to throw out our current protocol without confirming these current good tidings of information with further testing after another round or two.
Hopefully the other doctors in the group will agree and back us up on this. We just finished a round of Fenretinide yesterday, so we only two weeks to make a decision on future treatments. If we are going to be denied any more Fenretinide (this can happen if the study chair doctor feels Zachary’s disease is progressing), then we need to have another drug to turn to.
Soak it all in………think about our plight….enjoy the Halloween costume photo…….give me your feedback.
Scott
Saturday, October 30, 2004 12:21 AM CDT
“No good deed goes unpunished!”
All of our hard work to get our local hospital in a position where they could manufacture the isotope for patients here has come back to bite us in the a$$. (Don’t get me wrong….it IS a good thing that we now have this isotope available locally.)
The results are back from his scan last week……..
“Comparison with several prior examinations, the study appears to be fairly stable.”
“However, there is a questionable focus of slight worsening in the mid thoracic spine and therefore MRI correlation of the thoracic spine is suggested.”
Ok. What does it all mean? (What do I look like……an information desk?)
I don’t know. Probably, (hopefully), the new isotope has a different uptake than the old one is it is just showing the same disease that has always been there…..in a different way. We know from experience that switching MIBG locations can bring about variances in results….so we’re trying hard not to push too many panic buttons.
Zachary is still feeling great. He still looks great. And last but not least….he is still VERY capable of driving us insane on a daily basis. I guess we’ll be scheduled for the MRI next week some time. I will keep everyone posted as news come in.
Scott
Sunday, October 24, 2004 1:35 PM CDT
In keeping with the Halloween spirit, I have a tale of fright, fear and terror to bestow upon you. I must warn the feint of heart out there that this is NO laughing matter. Do NOT read on if you are easily frightened.
For those of you that grew up in the era of classic Alfred Hitchcock films, you will surely appreciate the horrific nature of BIRDS! These seemingly calm and adorable creatures are actually dragon-like demons of torture and mayhem that are just WAITING to inflict there terror upon us.
It is at this point that I recommend that you click over to the photo gallery and view the most recent entry (#3). I warn you once again…..don’t click over without first taking a deep breath and preparing yourself for the unsightly horror that awaits. After viewing the picture, try to regain your composure and then click on back to this entry to finish reading about how this nightmare came to pass.
If you are reading these words, then you have seen the scary picture that I mentioned earlier. Hopefully you are not scarred for life after witnessing the “BIRD ATTACK.” Let me tell you how this all came to pass……
…..like most stories, it started on what seemed to be an ordinary day. We were attending the annual Connor Moran Children’s Cancer Foundation’s outing to Lion Country Safari. LCS is a local attraction that features a preserve that you drive your car through while viewing the animals in natural settings. After the preserve, you get to walk through a petting zoo, play games, go on rides, and last but not least…..ENTER THE DOOMED CHAMBER OF THE DREADED LORIE’S.
For those of you that have never been to an aviary, Lories are a type of bird similar to parrots. They are colorfully attractive and seemingly harmless. This is all a clever ruse, like so many other freaks of nature that lure there unsuspecting prey into their lair, the Lories have a plan……and it is NO laughing matter.
I guess the ultimate insult is that the park actually has you PAY for a small cup of sugary liquid to feed these vicious predators with. What they DON’T tell you is this; Once the sugary liquid is gone, the Lories will be looking for something ELSE to feast upon! Just like in Jurassic Park II (The Lost World), you may recall the little girl at the beginning of the movie…she is feeding the tiny lizard-like dinosaurs and runs out of food……the little creatures then turn on her.
WELL, evidently there is another well guarded secret at Lion Country Safari…..Lories not only crave sugary liquids, they have a real affinity to sweat-covered balding/bald men over the age of 40. This little-known fact would have been VERY useful for my business partner and me BEFORE we entered their den of deceit and torture. Well, suffice it to say, we DID enter their lair, we DID purchase their sugary liquid, we DID feed the “lovable” little freaks of nature, we DID run out of their sugary liquid, and then we most certainly DID get attacked by those birds!
As you have already seen in the picture, these little birds can reduce a grown man to squealing like a little girl and making faces that NO grown man would want plastered all over the internet for everyone to see. (I was never too bright about avoiding humiliation.) The other little-known fact about these birds is that they possess a wickedly ticklish tongue that they are NOT afraid to use on your scalp, ears, neck, cheeks, etc. The obvious solution to this horrific scene involves “shooing” them off of your head/neck/shoulders with your hand….but when you try to do this, they simple bite you. No, the only way to rid yourself of the onslaught of terror is shake violently from side to side which, with luck, will eventually coax the winged demons into seeking perching stations elsewhere.
The moral of the story is…….DON’T FEED THE LORIES……(if you are over the age of 40 and losing your hair while sweating.)
Scott
Tuesday, October 19, 2004 6:24 PM CDT
Rules.
Rules can be a good thing.
Rules can help us keep order in an otherwise disorderly world.
Let us take a moment to see what Webster says about rules.
Rule (n) Controlling power; an authoritative direction or statement which regulates the method of doing something; a standard procedure. (v) To have control over; to make a straight line using a ruler; to be in command.
Ok, for the sake of today’s journal entry, lets disregard the ‘straight line’ part in stick with ‘regulates the method of doing something’ part. Zachary is on an experimental drug that is in phase II of its study life through the NIH. As with all drugs, this particular drug has rules. (Is that a collective groan I just heard from all of you visitors?) One of the many rules governing the use of the drug requires us to have Zachary scanned by nuclear medicine using I-123 (an isotope.) (There have been many “interesting” journal entries discussing isotopes and the various problems we’ve had over the past few years….if you missed them, feel free to go back and amuse yourself.) The scan is called an MIBG scan. It involves Zachary being injected with the isotope on Tuesday, and then being scanned 24 hours later on Wednesday. Hmmmmmmm. Seems pretty simple right? (Nothing is simple in our world.)
The previously mentioned isotope is not easily acquired. You cannot simply go into your back yard and drain some I-123 from your radioactive isotope tree. Walgreen’s and CVS don’t stock it on the shelf in between the Tylenol and Aspirin. The isotope has to be carefully made in a special pharmacy. Once it is made, it only has a life span of several hours before it is no longer of any use to anyone.
So, now that we have finished with our lesson (Isotope 101), let us move on to today’s events. Rebecca got Zachary out of school early so that he could drive the one hour ride to West Palm Beach to receive his injection. She called ahead to confirm the arrival time of the isotope from the lab in Miami. Everything was all set to go. Rebecca and Zachary sat in Nuclear Medicine for close to an hour waiting for the isotope to arrive, only to hear the phone ring and have a whole bunch of things go wrong…….
Miami was calling to inform our hospital that they had indeed made the isotope, but sadly the isotope had failed. Hmmmmm. What does that mean…failed? Does it mean the isotope was given an eye exam and couldn’t read the gigantic E? Does it mean it gave a urine sample and the rabbit died? Or maybe the isotope took the SAT test and got a 38. I honestly don’t know what constitutes a failure in the world of isotopes, but the bottom line was….they weren’t going to have a non-failing isotope for Zachary this week.
This revelation put into motion a couple of disturbing events.
1). The Nuclear Medicine doctor commented to Rebecca, “I wonder if that is what happened last week with that other neuroblastoma family.” This is bad. This is very bad folks. Evidently, one of the two other neuroblastoma families that gets scanned at our hospital had received an MIBG scan last week, only to have it come back indicating that the disease had spread throughout the child’s body….stomach, bladder, thyroid, chest, etc. The child had been sent for further testing….CAT scan, MRI, bone scan, only to have those tests come back negative. Imagine being the family and being told your child is now full of a rampant disease that is spreading out of control……only to find out a couple of days later….oops….we may have been wrong! Like I said….bad.
2). Rebecca got a hold of Zachary’s doctor’s office and informed them that the MIBG scan wasn’t going to happen this week. (Zachary is scheduled to start his next round of medicine on Tuesday.) (The “rules” state that he cannot start the next round until they see a current MIBG scan that confirms the disease has not started spreading.) The nurse told Rebecca that we would have to postpone the next round until the following week, so that we could scan next week. (This is the part where I was made aware of the goings on.) (In other words….this is where the $hit hit the fan.) Rebecca had to go into the doctors office, so I gave her a calm, sedate, reasonable message to pass along to the nurse from me…….”UNLESS YOU WANT ME GOING TO WAR WITH YOU AND YOUR OFFICE, YOU WILL GIVE US HIS MEDICINE FOR NEXT WEEK AND FIGURE OUT THE SCAN SCHEDULE…WHEN YOU CAN FIGURE IT OUT.”
My humble naïve opinion is this: Rules are great….rules are wonderful….they help to make the world go around. BUT, this particular rule is designed to keep a child from staying on an experimental drug past its point of usefulness. There is NO danger to Zachary if he takes an extra round and it turns out he didn’t need it. (Keep in mind that his last scan showed improvement....so it is unlikely that things turned bad this quickly.) However, I feel that there IS a danger when skipping a round of unnecessarily allowing a dangerous and aggressive disease to regain strength and start trouble again. In the big scheme of things, what difference does it make to them if the scan is a little bit late? Did I sleep through a logic class or something….are we not trying to prolong a child’s life…or possible even save it? I mean….I know their precious rules are …..well……precious…..but REALLY folks….what the #$&@ are they thinking?
Needless to say, the doctors office made a reasonable compromise……they will give us the medicine for the next round….and we will start it Wednesday evening….(one day late), after the MIBG scan that has been rescheduled for next week. Interestingly enough, you may remember that I had several meetings with the hospital CEO trying to convince them to make the isotope at our hospital, to avoid the many problems associated with transporting it from Miami……money of course was always a factor in our discussions. Today Rebecca learned that our hospital is going to start making the isotope and that quite possibly next week’s dose will be made right there in West Palm Beach. Hmmmm. I wish I had thought of that.
Scott
Thursday, October 14, 2004 7:38 PM CDT
You would think that after a two-week hiatus that I would have banked some amazing stories for everyone to enjoy………the truth is……life has been mostly (and thankfully) boring around here lately. We’ve had our share of drama…but nothing Earth-shattering.
Medical News:
Zachary continues to feel great! He just finished another round of Fenretinide and other than the usual stomach aches, he did fine. Next week we will repeat the always popular MIBG scan, so I will keep everyone posted on that front.
We DID have an interesting run-in with one of the nurses that “covers” Zachary school for the county heath department. Zachary’s medicine is supposed to be given with each meal. The drug itself is not too harsh on his system, but the large volume of capsules (10 after each meal) causes an upset stomach….especially if he doesn’t eat a good meal when taking them. Since school started, we have been giving the “lunch” dose when Zachary gets home at 2:30pm. This system has been flawed for quite some time, but it was never a huge issue, so I didn’t try to change it. During the last round, I noticed that Zachary’s stomach aches around dinner-time were really starting to interfere with his ability to eat normally and enjoy life without pain. I asked Rebecca about the possibility of Zachary taking that lunch dose at school. She had already asked the county nurse and was told, “Zachary CANNOT take that medicine at school because it does NOT come from a pharmacy.”
REALLY????? IS THAT SO?
WELL, WE’LL JUST HAVE TO SEE ABOUT THAT.
(How long has it been since I had a really good cause to fight about?)
Normally I would have enjoyed calling up the nurse and reeducating her as to what she was going to need to do to accommodate Zachary so that he didn’t have to suffer anymore, however, (there’s always a ‘however’…isn’t there?), I remembered that this was the same nurse from last year that tried to prevent Zachary from attending school during weeks when his port was accessed for chemo because, “He could yank out his needle and threaten the other children with it.” Riiiiiiiiiight. How uncanny of her to tap into the EXACT activity that cancer kids dream of night and day…….self-de-accessing their ports (NOT) and then running around after other kids with a needle in their hands (NOT, NOT.)
So, I wisely decided to skip over the queen of conspiracy theories and confront the nurse in charge of the entire Health Dept. for our schools. This woman was very reasonable. I didn’t even get to pull out the big guns and threaten to call our friends at the local TV station. I agreed to have our doctor’s office print up a label that would give the same information as a pharmacy script, and she checked with the State to make sure we weren’t violating any Patriot Act Laws. I even gave her the doctor’s name that is running the study from California, in case she wanted more information about the medicine.
Today she called back and said that we’re all set for the next round. Rebecca will bring 10 pills in each morning and give the bottle to the nurse, so she can give Zachary the pills at lunchtime. (Isn’t it just peachy keen when everyone does exactly what we cancer parents tell them to do?) (I’m sure they didn’t want to see me standing in front of their school on TV speaking about how the County had refused to allow my relapsed cancer patient son to take his much needed NIH medicine to keep the cancer at bay.)
Having solved THAT minor problem, we’re now working on deciphering the code that IS 10-year old attitude. Zachary’s latest trick revolves around his fascination with playing video games, but FREAKING out when he doesn’t instantly win. I don’t know how his brain got programmed into believing that he is entitled to win EVERY game….EVERY time, but evidently……that is exactly what has happened. We have been taking his games away from him when he gets too vocal and rough on his game controllers.
The other new Zacharyism is his argument style. He is NEVER wrong…about anything. This doesn’t bode well here in Jensen Beach….especially taking into consideration that I’m NEVER wrong. This of course makes our discussions VERY interesting.
All-in-all…it is GOOD to have ‘normal’ problems to worry about. I wouldn't trade these pre-teen problems for the pediatric oncology problems……any day.
Scott
Tuesday, October 12, 2004 12:00 AM CDT
Two weeks without an update……hmmmmmmmmmmm.
There must be loads of news to report………hmmmmmmmm.
I’m sure there are some fascinating “Zachary” stories to tell……hmmmmmm.
Stayed tuned……..
Scott
Wednesday, September 29, 2004 5:17 PM CDT
Phone service (and internet service) has been restored!
We rode out the hurricane in Brandon, Florida (just east of Tampa.) The eye came over our area but did very little damage. We lost power for a whole 5 minutes. By the time the storm had crossed the state, the winds were down to 75mph. There were tornados and flooding in some of the areas around where we were staying, but none of that affected us.
I got the call from my partner that power was back on in our neighborhood on Sunday evening, so we drove home on Monday. Once again we had to take an alternate route, because our normal road was under water and impassable. Our house once again avoided any major damage. This time I lost 2 or 3 shingles on the vent ridge, and some standing water came up through my foundation and dampened my carpeting in the living room. (All very minor problems compared to the extensive damage that we have seen in our area.) Many homes and businesses are destroyed. Parts of the barrier island are impassable and have had their roads completely washed away by the storm.
Our business has been shut down all week; we still have no power or phones there. The power company is reporting that some of the homes and businesses in our area won’t have power until October, 12th. (Hurry up and wait.)
Zachary’s urine report finally got through to us. Here are the numbers:
HVA – 18. (Unchanged from last time….slightly elevated from the normal range of 1 – 15.)
VMA – 4.5 (This dropped from 8.3.) The normal range is 1 – 11, so this one is looking very nice indeed.
There is no school this week……again…..so we’ll probably have several of our vacations cut short this holiday season……and now it is looking like summer vacation may start later than normal.
I hope everyone in Florida got through this one as well as we did.
Scott
Friday, September 24, 2004 1:37 PM CDT
Here we are sitting in the same hotel in Brandon (near Tampa) Florida, waiting for another hurricane to hit the treasure coast early Sunday morning. This one is not “scheduled” to intensify to the strength of Frances, but with these things, you never know if tornados are going to start popping up and wiping out your neighborhood. We just saw the 2pm update, (they give new data every three hours….just to keep us interested) and the good news is that it is moving faster over water (about 9mph), so it will not have as much time to gain strength over the warmer waters….the bad news is that it probably won’t be as affected by the high pressure that they were hoping would steer it north of us….and possibly out into the Atlantic.
On the way out of town this morning we stopped to get some drinks for the road, (non-alcoholic), and I overheard a woman talking about a house she had seen the day before. The house had the windows all boarded up with plywood, and the owner had painted the following message on the wood:
1 – Charley
2 – Frances
3 – Ivan
4 – Sale
Our governor was doing a press conference yesterday and a reporter asked him if he was working on a disaster plan for this current hurricane…..he thought they were kidding….he hadn’t heard about Jeanne. Oops. I guess there are too many storms to keep of track of. Now we have Lisa out there that “may” follow in Jeanne’s path.
So, I will update when I can. If you are reading this from South Florida, button down the hatches and hold on tight.
Scott
Sunday, September 19, 2004 9:12 AM CDT
Slowly but surely life in our neck of the woods is getting back to “normal.” Debris from the downed trees is starting to get picked up, traffic lights are mostly restored, leaky roofs are covered with tarps, and businesses are reopening. Other parts of our country are NOT fairing as well. If you haven’t been keeping up with the news, hurricane Ivan obliterated the region around the Florida/Alabama border. Mother Nature is definitely a force to be respected.
Zachary continues on his current course of growing taller, growing hair, adding pounds, and enjoying being alive and feeling well. He is still doing well in school, (interim report cards come out on Monday.) We are waiting patiently on the most recent urine report numbers. (Use sarcasm while reading the next line.) Since we put SO much weight into the results of urine reports, we are all holding our breath in anticipation of the news.
If anyone knows a cheap tree stump removal service, send them our way. That is pretty much the last remnant of the hurricane.
Scott
Thursday, September 9, 2004 6:05 PM CDT
If you haven’t read the update that was posted yesterday, then you may want to go back and get yourself caught up by checking the journal history.
The tree in the back yard was cut up into little itsy bitsy pieces today by our neighbor’s son and his friend. The price was right, and I was having all sorts of problems with the new chain saw that I had purchased. (Never having used a chain saw before was a BIG part of the problem.) (I’m thinking that chain saws are dangerous tools that are NOT meant for everyone.)
We are still living with a curfew. Most of our traffic lights are out or missing altogether. The amount of debris lying around is amazing. If hurricane Ivan comes this way, the entire state of Florida will need a major do-over.
We finally got the results from last week’s MIBG scan. The exact text from that report is as follows:
Compared with the prior studies of 7/8/04 and 4/15/04 there does appear to be some interval improvement. There continue to be sites of abnormal MIBG accumulation along the left parietal bone of the skull and also along the thoracic spine and along the pelvis/left hip. These appear to be less prominent compared with the prior studies. Furthermore, there do not appear to be any new sites of MIBG accumulation.
So, there you have it. Apparent improvement!!!
Scott
Wednesday, September 8, 2004 6:24 PM CDT
Not to confuse everyone anymore than they already are, this journal entry was written at 8:00am on Tuesday, September 07, 2004. I’m sure you are noticing that the “post” date of the journal entry does NOT match the date that it was written. We do not have our internet service back yet. We returned home last night from Tampa Bay to start dealing with the mess that Frances left behind. I WAS going to wait for internet access to write this entry, but then I decided to preserve some of my demented thoughts while they were fresh in my mind.
First of all, we got VERY lucky with our choice of Tampa Bay. This storm could have easily stayed a category 3 or 4 and moved across the state to find us. As it was, the eye of the storm passed right over our heads. Luckily by that time, it had weakened to a strong tropical storm, hitting us with winds of 30 – 60 mph. Our big debate was trying to decide when to return home. When we woke up Monday morning, I had a message from my business partner that power had been restored to our neighborhood. THAT was the deciding factor. Our normal route across the state was open, but that area was hit with 5 tornados in less than an hour, (the southeastern quadrant of Frances was brutal), and so we opted for a different route. We drove south on I-75 with the intention of crossing the state on Alligator Alley. When we hit Ft. Myers, we realized that route 80 was open, and that it could save us 1.5 hours, so we took it. Sadly, the most exciting thing to happen to me during the last four days was finding a gas station that was open and serving gas. I’ve never been so happy to get fuel in my life!
We made it across the state with little fanfare, only to run into a stray thunderstorm that was a remnant of Frances. It spawned a tornado in Jupiter, (as we were passing Jupiter), and Rebecca and I were “lucky” enough to see the top of the tornado as it was sucked back up into the clouds. (Leaving a hurricane to enter a tornado……..we’re not the shiniest coins in the fountain.)
We made it home around 4:30pm and unloaded our cars. (My parents are with us, because they live in Vero Beach and still do not have power.) Our new roof held up like a champ, we had a new small tree fall over in the front yard, and in the back yard, we have a HUGE tree fallen over. (The nerve of my neighbor to plant that upside down tree. Those darn roots fell over into MY yard and almost hit my house!)
Check out the photo album to see the tree.
Today I am driving my parents up to Vero Beach to check out their house. There are National Guard watching the causeways, you have to show ID to get across.
There is a dawn to dusk curfew. Fuel is in short supply. Grocery stores have not reopened for regular business.
My business partner’s house (3 blocks away from me) took major damage. The roof is caving in, the walls are cracked, there is major water damage……it may be a total loss.
Our business was unscathed. However, we have several friends that have had catastrophic damage to their businesses.
Our industry will probably be shut down for months. (If we’re lucky.)
BUT, we’re all alive and well. Homes can be rebuilt. Businesses can be rebuilt. Trees can be replanted.
Scott
Thursday, September 2, 2004 4:15 PM CDT
What did one shepherd say to the other?
"Let's get the flock out of here!"
We have bugged out of town to avoid Frances. We have joined my folks in a small town near Tampa Bay. Hopefully the storm will not find us over here.
Scott
Monday, August 30, 2004 7:35 PM CDT
No lost or forgotten children this week……no keys locked in any cars…….BUT, there NEVER seems to be a shortage of drama in our neck of the woods.
Zachary got a cold/cough that started Thursday. Rebecca took him to the doctor and they prescribed a Z-pack. The green boogers turned to clear boogers pretty quickly, so we didn’t have to ruin his summer by not letting him attend the annual Connor Moran Children’s Cancer Foundation outing at our local water park…….The Rapids.
Zachary always looks forward to going to the water park, and it’s a great opportunity for us to see many of our friends that we’ve haven’t seen in awhile. We were lucky to have had a wonderful sunny day to enjoy the water. A few clouds threatened in the afternoon, but they never materialized into any rain.
If you live in a hole, or don’t watch the weather channel, then you probably haven’t noticed that we have a category 3 (soon to strengthen into a category 5) hurricane raging out in the Atlantic Ocean, slowly working it’s way towards the east coast of Florida. The storm is still about 5 days away, and hurricane track predicting is anything BUT an exact science, so it’s WAY too early to tell if this one is going to hit the left side of our house, or the right side. If it does end up targeting Florida, we’ll probably bug out. (Nobody respects a coward……but living to fight another day sounds like the plan for me.)
Work has been pretty exciting lately. This is traditionally our slowest time of year, (back to school, hurricanes, etc.), but we’ve picked up some new lines and it looks like we now have an excellent opportunity to grow our business. (It’s not as tasty as chocolate covered key lime pie bars….but it pays the bills!) I’ll be sure to keep you posted as things progress.
Scott
Saturday, August 21, 2004 9:15 AM CDT
Enough groveling already! It gets a little bit embarrassing when you start to beg. So, here goes nothing……
A long time ago in a galaxy far, far away…..(Oh wait….that’s a different story.)
A good friend of mine from when I lived in Harrisburg, PA came down to Florida with his wife and her children. We agreed to meet them in Orlando for a day at Universal Studios. We drove up on Saturday and had dinner and a nice evening with them. Their son is 11, so he and Zachary got along swimmingly. Sunday at Universal Studios was great. We had really nice weather for most of the day, and everyone had fun. After Universal, we decided to have dinner at Ponderosa Steak House before Rebecca, Zachary and I had to drive home to Jensen Beach. The Ponderosa we ate at is a very busy restaurant on International Drive. It shares its parking lot with a little strip mall that has a gift shop. Well, after dinner, the two 14 year-olds, the 11 year-old, and Zachary asked if they could walk the 40 or 50 feet across the parking lot see the store. We let them go, because we were literally 60 or 70 seconds behind them. When I walked into the store, I saw the two older kids and asked where Zachary was……they said he was with Mark (the 11 year-old.) I found Mark and asked him the same question. His response was, “He is with Darren.”(The older boy.) OH $%@&! After that it is pretty much a blur. I remember one of the children telling us that Zachary said he was going to walk back to Ponderosa, but we had not seen him when we had walked across the parking lot. I took off with my friend Terry and started to search Ponderosa. (The 15,298 people waiting in line and dining there didn’t seem to appreciate me running around like a mad man looking for my child.) Also, I kind of scared the $#&^ out of some kid in a bathroom stall when I stuck my head over the top to see if it was Zachary. After that search, I ran outside and saw that Rebecca and Linda had not had any more luck than we had finding our son…..so I called 911. I was pretty calm until the 911 operator asked me WHICH Ponderosa on International Drive we were located at. Evidently there are 185 within a 3 block area…..(that may have been somewhat of an exaggeration.) I got the address off of the front of the building and gave her Zachary’s description. About 10 seconds after she informed that a patrol car was on the way, Rebecca and Linda found Zachary. He had gotten a stomach ache and was in the “employee only” bathroom at the gift shop. Linda had asked if they had a bathroom, and the clerk had told her that it was for employees only……..about 10 minutes into our search she went back and asked if they had let a child in there……and of course…..they had. (Amazingly enough………there were NO gift store clerks strangled in Orlando that night.)
So, having fully recovered from that episode and gotten back into our normal home routines…………Rebecca called me on Tuesday at about 1:50pm. She was running late returning from Jupiter and asked if I could swing over to the school at 2:15pm to pick up Zachary. I agreed and told her to meet me at my shop to get him from me so I could finish up working when she got back. Well, you can accomplish a lot of things in 25 minutes. I mean….the school is only 5 minutes away……so I really had a good 20 minutes to knock out some calls, paperwork, orders….etc. Well, at 2:20pm I realized that I forgotten something……….I flew……I mean……..I FLEW out to my car and raced (within the posted speed limits) over to the school. (You know they actually expect you NOT to exceed 20mph near schools at that time of day………ridiculous!) I pulled up and Zachary was waiting patiently inside near the office for me. (He had JUST finished his duties and didn’t even realize that I was late.) I of course….will never get over the guilt……….it will haunt me forever!
So, having fully recovered (not really) from THAT episode and gotten back to work the next day, one would never expect Murphy’s Law to strike for a third time in four days.
Let me preface this next story with a brief description of our Crowder Rod van. We have a normal cargo van that we sell fishing rods out of. We built a custom wood rack into the back that completely fills up the back 8’ of the van. The rack looks like a honeycomb of 8” x 8” cubes that run for 8’ in length. There are 42 of these long spaces that we keep the rods in. It allows us to carry a LOT of rods, AND to keep them organized. The description of the back of the van is needed to FULLY appreciated how $crewed you would be if you somehow locked the keys in the BACK of the van. I mean….any normal idiot can lock the keys in the FRONT of a vehicle. What kind of originality does it take to do that? It happens every day. So, there I was, working with a customer at the back of the van. (Now, keep in mind that I am pretty anal about car keys…….I ALWAYS feel for them in my pocket before locking a door.) The customer had handed me a check for a previous order, and I didn’t want to crumble it up and shove it into my pocket. I set it down on the back ledge, just behind the rod rack. But, it was windy, so I didn’t want it to blow away. The customer wanted to see a rod, so I very cleverly used the keys as a weight, to hold the check down and keep it from blowing away. (I’m a thinker.) Five minutes later, having successfully sold the customer on the rod, I locked the back door, (protecting our investment) and closed the door. About 1.83402 seconds after the door closed, I remembered that the keys were sitting INSIDE on the back ledge. Oooooooops.
I went into the shop and started to call locksmiths. Unfortunately for me, they can’t use their normal tools to get into the vehicle quickly…….like when you lock your keys in the front of the vehicle. I had to find one that could make a new key to access the inside. Thirty minutes and $85.00 later, I had my keys and was back on the road.
So boys and girls, I hope we have all learned some very useful and important lessons here today. Let me summarize today’s lessons:
1). NEVER EAT AT PONDEROSA……..EVER!
2). NEVER AGREE TO PICK YOUR CHILD UP FROM SCHOOL ON A DAY THAT YOU ARE NOT USED TO DOING SO.
3). WHEN WEIGHING DOWN A CHECK FROM A CUSTOMER WHILE TRYING TO SELL THEM A ROD FROM THE BACK OF YOUR WORK VAN, USE YOUR FOOT INSTEAD OF THE KEYS…..YOU WILL BE LESS LIKELY TO CLOSE THE DOOR IF YOUR FOOT IS IN THE WAY!
Scott
P.S. Zachary woke up yesterday morning at 4:00am with a bad stomach ache. He ended up throwing up twice before 6:30am. Luckily, he never got a fever. We bumped back his Fenretinide schedule to give his belly a break for the day, and by 5:00pm he was pretty much back to his “normal” self. Today he woke up and feels great! (It could have been something he ate…..or possibly just a normal kid stomach virus.)
Thursday, August 19, 2004 5:20 PM CDT
Well once again it has been about a week in between updates. I’m not sure who I can blame for this gross violation of protocol, but give me some time to think about it….I’m sure a good scapegoat will come to mind.
As far as our dull and mundane existence down here in Florida, there really isn’t too much exciting to report, just the usual…..you know…….we lost Zachary in Orlando, then I forgot to pick him up from school…..oh….and then there was the locking the keys in my work van……1.5 hours away from our shop……for the first time in my 41 years.
So, I’m sure you all would be bored to tears to hear the details of those escapades, so I’ll save you from that fate and just say, “Have a nice weekend!”
Scott
P.S. I wonder how many guest book entries begging for details will be needed to provoke me into expounding on our adventures.
Friday, August 13, 2004 6:47 PM CDT
If you are just checking in for the first time in over 3 days or so, you may want to read the last update, it contains information that is pertinent to THIS entry. Also, that new photo of Zachary is mentioned in it, and I wouldn’t want anybody to feel “slighted” that they missed out on our little couch potato.
Why is it that every little mishap or adventure we encounter seems to take on a life of its own and grow into a wild and unruly monster? (Maybe we just have a flair for the dramatic.)
The water heater saga isn’t going away just yet. Before I go on, I feel it is important to mention that my prowess and expertise in ALL things mechanical and home improvement related has almost definitely reached the far corners of the Earth. I’m thinking that there are salesmen around the country just waiting for me to call them so that they can up sell us into a more expensive model of some gadget or another.
When I called Home Depot the other night to order the water heater, the helpful salesman asked me the prerequisite questions about what unit I was replacing and what our needs were. He then proceeded to suggest that we take the 50 gallon model that comes with a 13,927 year warranty. Evidently the resale value of your home is directly tied into the warranty life span, and you DEFINITELY want your water heater protected for whatever alien population will be inhabiting our planet 10,000 years from now. Being the savvy informed guy that I am, I very smoothly talked him down to the 6,122 year warranty, thus saving us a bunch of money.
Unfortunately, Murphy’s Law was in full effect yesterday. The installation guy showed up and immediately recognized that the unit that was sold to us over the phone was WAY too big (physically and electronically) for our house. Fortunately, he had a smaller 40 gallon, 6 year warranty model on his truck for another customer. He made the sacrifice and gave us that model. After hooking up the new unit and getting all of the connections connected, (That is technical jargon that I don’t expect all of you mortals to understand.) he plugged the unit in and was greeted by a HUGE spark and flash and pop. I was in the other room, so I didn’t see his reaction, but I’m fairly sure that he ruined a perfectly good pair of underwear. After taking apart the top of the unit, he was able to find the spot where the metal thingy cut through the wire thingy and arced the electrical thingy. (Once again, I apologize for all of the technical jargon, but us guys that are “in the know” talk the talk and walk the walk.)
The end result is, we have hot water again. I guess at some point I’ll need to find an electrician to replace that wire. (The electrical tape and bubble gum that is holding it together have me somewhat concerned.)
This morning we had to get an early start so we could get to the hospital for Zachary’s checkup. He needed to get his port flushed, his cholesterol checked, and his monthly Pentamadine therapy. I had the alarm set for 6:30am. Of course, I woke up at 4:30am for no particular reason. By 6:29am I had fallen soundly back asleep. Our alarm is set for a music station that Rebecca listens to. Now, by pure coincidence, THAT particular station participates in the annual St. Jude money raising drive. So, how weird is it that when our alarm went off at 6:30am (One full minute after I fell asleep), that the very first word I heard was………”neuroblastoma.” Yep. They were in the middle of telling the sad story of a child that …blah, blah, blah….you know the rest. So there I was, completely having forgotten that we had a child with cancer, only to have it THROWN in my face by some uncaring radio station. All of you cancer families know that it’s easy to go for weeks without thinking about cancer or being reminded of it…….NOT! (I guess I should be grateful for that one full minute of restful bliss.)
Zachary had to miss school today for his medical checkups, but as luck would have it, we had a major hurricane in Florida today. (That didn’t come out quite how I intended.) So, school was canceled. It’s a good thing they canceled school today, the winds here in Jensen Beach got up over 5mph. I’m sitting here at 7:41pm looking out of my window and seeing a torrential drizzle. (That was sarcasm for you late comers.) The storm is very serious for those on the West coast of Florida, but our local news guys just LOVE to make things look and sound worse for us than they ever are. I actually watched a local newscast earlier today where the reporter was showing the wind blowing a tree in the background and said, “You can see the tree blowing around, we’ve had gusts over 15mph, look at how my tie keeps getting blown around.” (I am not making this up…..15mph.) Zachary can fart at speeds of close to 20mph…..and those have the smell to increase the damage.
Tomorrow we’re supposed to go to Orlando (If Charlie leaves it standing) and see an old friend of mine from PA and his family. If all goes well, we’ll spend Sunday at Universal Studios.
Scott
Wednesday, August 11, 2004 9:50 PM CDT
****NEW PHOTO OF ZMAN****
Everything is great on the home-front. Zachary feels wonderful. All is well. Things are running smoothly. We’re chugging along nicely. (Are you buying any of the #$@$%?)
Everything IS going great…..unless you include the water heater. Then everything is NOT going well. We’ve noticed an odd odor coming from the garage lately. We haven’t been able to pin it down, but it smelled suspiciously like a skunk that had died, and started to rot….after being soaked in kerosene and then lit on fire. Anyways….I noticed that some very “gamey” water was pooled around the water heater in the pan. We’ve lived here five years and have never touched or had to deal with the water heater, so I had no idea how old the thing was. We called the company that made the monster and they told us that the first four digits of the serial number, (0886) indicate the date of manufacture. (That would make this unit 8 years older than Zachary.)
I called Home Depot and begged them to get a new one over tomorrow, and they obliged. Home ownership is a wonderful thing.
So, OTHER than the water heater….everything is just peachy keen here at our house.
Well, that isn’t exactly accurate. Zachary has signed up for band this year. He wants to play the snare drum. We haven’t had to address the issue of actually getting him a drum yet, so our sanity has been somewhat preserved…..up until tonight. One of our neighbors (coincidently) offered to give us their son’s old drum set the other night. I told them that Zachary was indeed interested in playing the drums, but that I wasn’t entirely sold on the idea yet. He was very gracious and offered to let us think about it for a few days.
Not being of sound mind, I slipped and mentioned this to Zachary on Monday. Since then, he has relentlessly hounded me to go over and check them out. I finally succumbed to the overwhelming pressure after dinner this evening and allowed him to venture across the street to “See the drum set.” (I never said anything about getting them yet.)
About 2 minutes and 18 seconds after crossing the street, Zachary was returning home, with our neighbor….both carrying drum components. (Did I ever actually have a chance here?) (Don’t answer that question….it was rhetorical.)
So, the snare drum and two cymbal sets made their way into our house at approximately 7:21pm on August 11, 2004. I’m sure at some point in the near future, that moment in time will be referenced as the exact moment that the remnants of my sanity made their way out of my head.
Scott
P.S. The good news is…..when he tries to ignore us in the morning while we’re trying to wake him up for school, he WILL hear the beat of an entirely different drum from now on.
Friday, August 6, 2004 6:52 AM CDT
***CHECK OUT THE NEW PHOTO***
I know, I know, I know…….I’m a lazy good for nothing blah blah blah blah for not updating in the past 7 days. Well if you give me enough time I’m sure I can come up with some good excuses.
I wrote several journal entries, but the dog ate them. (Oh $#*t, we don’t have a dog.)
We’ve had bad storms and we are avoiding using ANY electrical devices. (Other than those 16 hours each day when we’re online playing at Pogo.com.)
We were kidnapped by aliens and taken to a far-away galaxy for experimentation. (If you had your choice of 6 billion test subjects….would YOU choose us?)
So, there you have it. Choose whichever excuse suits your mood and move on with your life. Other than the continued excitement at work, our lives have been pretty much on cruise control this past week. Zachary has been getting ready for school. Rebecca has been helping a few of the teachers get their rooms ready for Monday, and I have been helping to rework our warehouse for the new system that we are putting into place. Yesterday was construction day…building shelving units and designing new ways to fit everything into our shop. (I failed wood shop in High School, and I haven’t really learned much in that area since then. I keep remembering what they did to the last Jewish carpenter.)
Even though I lack the skills or knowledge to properly build some of this stuff, I DO occasionally come up with some good design ideas. We are very close to being finished with the warehouse makeover.
Zachary continues to amaze and please everyone that hasn’t seen him since school ended in May. He has a full head of hair, he now weighs 80lbs. and he has grown about an inch since April. I know I keep repeating myself, but we are VERY lucky to have this high quality of life for our child!
A couple of days ago Rebecca asked me if I was going to update the page and I dismissed the idea for some lame reason. That evening, I started to think about it and came up with a theory. I used to LOVE the updates and look forward to writing them in the evening. I would drive around during the day mentally “writing” what I would later type into the journal, and it would give me great pleasure to convey our daily adventures. I’m starting to think that my avoidance of this duty may partially stem from not wanting to “think” about THIS anymore than I have to. “Out of sight, out of mind.” (If I’m not having to put extra thought into our dilemma each day, then aren’t we just some normal family with a normal healthy child, doing normal things?) Do regular families have to sit down each day and rethink about the magnitude of “non-curable” childhood cancer and how it affects their every-waking hour? Why should we?
The answer is……..there is no answer. (At least no EASY answer.) This is the hand we’ve been dealt. Hiding from it won’t make it go away. Avoiding it won’t make it any less serious. We are lucky on many, many levels. We know this.
Somewhere between staying true to who we are and trying to live like “normal” people is a balance in life that all families in this battle seek.
(That last quote of mine might become famous someday….you should make a note of when you read it for the first time…..you know….so you can tell your grandchildren.)
Scott
Thursday, July 29, 2004 6:11 PM CDT
Medical News:
Zachary’s cholesterol levels finally came down to Earth. He was able to restart his Fenretinide on Tuesday…exactly one week behind schedule. Zachary is doing golf/bowling camp for the third week in a row. He bowls on Monday and Friday, and gets golf instruction on the other days. He is still feeling great and looking healthier than he has in many years. We are truly lucky and blessed to have this quality of life for Zachary.
Life in general has been anything but boring for us lately. About two weeks ago my work truck was broken into and robbed. Thieves either drilled out or cut off our lock and used one product we sell, chum bags, to load up and carry off a lot of fishing supplies. They did leave behind some evidence that the police are working with…maybe they’ll catch them. Then, just to keep us on our toes……that same truck overheated last Thursday. Our local mechanics replaced a leaking water pump and had us back on the road by Monday. Unfortunately, by Monday afternoon, our driver broke down again. This time the report was catastrophic. The head gasket was damaged, the head was cracked….and three of the pistons were cracked and ruined. “When it rains…it pours.” So, we are looking to make some significant changes in our business plan. Hopefully our new plans will work out for us.
Scott
P.S. Last week Zachary fell at golf camp (on his wheelie shoes) and cut his knee. The wound was healing nicely until THIS week when he fell while bowling, reopening the wound and spreading blood everywhere. He has now made me proud by carrying on the tradition that I started by injuring oneself while bowling. This dangerous and often overlooked sport needs to be monitored much more closely. I think mandatory helmets, knee pads, elbow pads, gloves, eye protection and cups should be issued with the shoes. This may become my new focus in life….advocating bowling safety.
Saturday, July 24, 2004 7:16 AM CDT
For all of you gullible, tarot card reading, UFO spotting, pet psychic believing, Bigfoot watching, Loch Ness monster seeing, flat-Earth following nut cases out there, the NEW urine numbers are in!
(wow) (I can hardly contain my excitement) (The drum roll must be deafening)
If there EVER was a more anti-climactic moment in the history of these journal entries, I don’t know what it is!
The “correct” level that we have been looking for this whole time is the HVA/Creatinine Ratio, and the VMA/Creatinine Ratio.
HVA = 18. (Normal range = 4 – 15)
VMA = 8.3. (Normal range = 2 – 11)
So there you have it. Now you can all sleep soundly tonight with the warm and fuzzy knowledge that one of his levels is just barely over the normal range, and the other is safely tucked away inside of the normal range.
What does it all mean you ask? (Frankly at this point, I have a better chance of picking the winning lotto numbers in every lottery across the country on the same day, while at the same time becoming the first person to win the presidential election without being on any ballot….anywhere, while also being selected to be the first “normal” citizen to join the next space shuttle crew, than figuring out urine numbers.) I’m not saying these things won’t happen, I’m just saying that if YOU believe they are going to happen, then I will gladly send you a signed 8X10 glossy once I receive your cashier’s check or credit card payment in the amount of $1,000.00.
We are getting ready to head down to WPB for the meeting about forming a clinic for the oncology/hematology kids. This is a project that has been “in the works” since before Zachary was diagnosed. I can remember going to meetings with the board of directors and discussing sites, building plans, etc. 3 ½ years ago, it seemed like it was going to become a reality back then……and then it sort of faded away. I hope the current group has made progress so our children can get this much needed facility. Clinics in other cities have been hugely successful and universally loved by the families that have access to them.
Scott
Thursday, July 22, 2004 3:14 PM CDT
Sorry for the lack of updates this week, but in addition to all of the normal (or abnormal) excitement that we experience in our little corner of the world, our computer has been giving us problems all week. (I water it regularly and give it plenty of sunlight, so I can’t imagine what the problem is.)
Tomorrow is the Quantum House golf tournament. I will be participating with some friends. (I’ll just go ahead and yell “FORE” now and get it over with.) Saturday morning we have the meeting with the other parents and doctors regarding the new pediatric oncology/hematology clinic that is being planned. Other than that, there is not a whole lot new going on in our world. Rebecca will take Zachary to the local lab tomorrow to get retested for cholesterol levels. Hopefully he will be able to get back on the new medicine next week.
Scott
P.S. I don’t usually ask for any help on here, but I am having difficulty finding an answer to a problem I’m having at work. Does anyone out there in computer land have experience with Excel? I am trying to use “If – Then” type equations with multiple variables. I have succeeded in making one that used two variables, but I now am in need of one that allows for three. If you think that you can help, please email me or call me (If I know you well enough to have given you my number) and I will explain further what I am trying to do. (Please don’t feel obligated to email me on how to sum up numbers or do division. This is not a “normal” equation that I am looking for.) Thank you.
Monday, July 19, 2004 5:07 PM CDT
I made it back from my trip relatively unscathed. (Some of the images from Las Vegas may haunt me for years to come.) Rebecca and Zachary held down the fort and avoided any calamities.
I’ve been trying to remember if I have written about the cholesterol levels that we now need to monitor for Zachary because of his new medicines, and I just can’t remember. (I’m definitely too lazy to go back and read them all.) So excuse me if some of this sounds repetitive. Zachary’s new medicine came with an instruction video that sends a very clear message regarding one’s diet while taking the pills. “A diet heavy in fats will aid in absorption of the medicine.” Interestingly enough, when you read the protocol you will notice that one of the levels that need to be monitored in the blood is the cholesterol. (The triglycerides in particular.) The protocol reads as follows: “If the triglyceride level exceeds 300, the patient is to postpone the round of pill taking for two weeks. If at that time the level has not dropped to below 300, then the patient is required to begin taking a triglyceride reducing medicine.” Hmmmmmm. Let’s examine this a little closer.
A). Zachary needs to be eating foods HIGH in fats to help with absorption in the blood.
B). The medicine can increase the triglycerides to dangerous levels, so monitoring these levels is crucial.
(I’m sensing a contradictory nature to rules ‘A’ and ‘B’ when looked at closely.)
(I realize that none of us are professionals in the medical field, but I REALLY think there is a contradiction here………)
(I’m gonna go out on a limb and surmise the following:)
EATING FOODS HIGH IN FATS RAISES TRIGLYCERIDES. TAKING THIS MEDICINE ALSO RAISES THESE LEVELS. LEVELS THAT ARE TOO HIGH PREVENT US FROM TAKING THIS MEDICINE. THIS IS A CATCH-22
(There….I got that off my chest.)
So, we are now in “delay mode.” Hmmmmm. (Been there…..done that.)
Delays in treatment for your child with cancer are like bamboo under the fingernails. Sure, it hurts like hell, but once you’ve had it happen to you, you keep coming back for more.
Scott
Wednesday, July 14, 2004 3:44 PM CDT
I am preparing to leave for a business trip for three days. (No journal entries until I return on Saturday.) Rebecca and Zachary will be holding down the home front.
Zachary has been feeling great this week. He has been attending a golf/bowling camp each day for about 3 hours. I have taken him golfing a few times and he seems to enjoy it, so maybe we have found yet another activity for him.
We collected the 24-hour urine for the doctor’s office over the weekend. The plan was for me to meet one of the nurses early Tuesday morning on my way to Ft. Lauderdale and hand over the urine jar. The clandestine meeting was scheduled for 5:45am, to discourage any surveillance that may have been attempted. (The less light during the rendezvous, the less likely the enemy is watching.) The code phrase for the handoff went something like this: “The river runs yellow.” (Response) “Stinky pee needs to be kept cold.” (Re-response) “Take the F&%$#@ pee and get it right this time!”
Medically speaking, there is not really anything else to report from down here in sunny Florida. Sadly though, our little corner of the woods is ONCE again in the news.
For those of you that live under a rock and don’t turn on your TV sets or read your newspapers, we had a tiger on the loose for a day and half this week. An ex-Tarzan actor that lives in West Palm Beach keeps a few large cats on his property. This particular tiger has escaped before, and just two years ago it attacked a woman at his ranch and nearly crushed her head. Anyways, it was BIG news down here. Yesterday, after twenty-some hours of trying to track down and tranquilize the tiger, a wildlife officer shot and killed the tiger with five shots after the animal “lunged” at him. As you can well imagine, this story has been the topic of heated conversations all day on the talk radio shows down here. “It was de-clawed….why did they have to shoot it?” “It was bottle fed since birth and slept in the bed with its owner….it didn’t need to be put down!”
The Monday morning quarterbacking is in full force. EVERYONE has an opinion about Bobo the now-dead tiger. A FULL investigation is underway to make sure the law enforcement folks got it all right. (Counting votes…….shooting tigers…….how proud we must be for our news making abilities.)
After listening to 6 or 7 folks bash the heck out of our local officers for the handling of this event, I feel obligated to voice my opinion. Here goes nothing.
People that say how they would react in a situation involving guns and shootings fall into two categories in my opinion.
1). They have been in a similar situation and can speak from prior experience.
2). They are guessing.
I am fairly certain that most of the folks I heard on the radio today fall into the second category. Living in America entitles everyone to an opinion. Does it entitle everyone to be ignorant and stupid though? If you are not happy with the outcome of tigergate (I should trademark that one…..I could make millions) and you feel that it was not handled properly, then maybe you could call a radio show and say…..”I am sad that the tiger was shot and killed. I truly hope that the law enforcement folks did everything within their powers to prevent that from happening. I further hope that they will own up to any mistakes that have been made so that future loose tigers in WPB will be handled in a better manner. (Future loose tigers? That could be the most unnecessarily politically correct comment EVER.) How ANYONE can second guess an officer that was faced with a 600lb. hungry tiger (with a full set of teeth…..the tiger…I don’t know about the officer) is BEYOND me. These guys/gals tried tracking this thing for almost two days. They had to cordon off roads and divert traffic. They had to evacuate people from their homes to protect them. Let’s give them a break and a little bit of leeway here. As Jack N. said in A Few Good Men….”I don’t have the time nor the inclination to answer questions from someone that rises and sleeps under the blanket of my protection and then questions the manner in which I provide it. I would rather you just said “Thank you” and left it at that. Otherwise I suggest you pick up a rifle and stand a post.”
Had this animal gotten to a child or community member and hurt or killed someone, these same folks would be bashing and ridiculing the officers for not shooting the animal when they had a chance.
I realize that questioning our authorities is part of what this great country was built on, but we have become a society that wants instant answers and perfection across the board. One caller today actually said, “These officers should have been prepared for this…..why weren’t they trained for this?” Oh yeah….lets drop the whole “preparing for terrorists” thing and jump right on this loose tiger thing…..its a MUCH more pressing issue for our community.
Scott
Saturday, July 10, 2004 9:34 AM CDT
On Thursday Zachary had his MIBG scan. While he was sleeping for that test, with Rebecca sitting next to him, I ventured over to the doctors office to try and unravel the mystery that IS…..urine. Having traveled down this road before, I anticipated that I would be prepared for whatever lay before me. As always…..I was wrong. The doctors office took full blame for the urine debacle this week. As I entered the office, they were busy working with a representative from a local lab to implement a NEW system that would eliminate future problems. (Where have I heard THAT one before?) The end result from this week’s urine mess is that the results are totally useless. The testing method was wrong. Their methodology was wrong. Their thought processes were wrong. Everything was wrong. We were now back to square one. We have to do ANOTHER 24 urine collection. We then have to wait for those results. Now, because they will be processed by a NEW lab, we will have no baseline to compare them to. (You cannot compare HVA/VMA results from different labs.) (It is one of the things that make having a child with neuroblastoma SO much fun.) So, when the results come in. We will have to mull over them over another two months while we wait to repeat the urine test with this same lab. THEN we can compare the two……..and start the process all over again.
When I wrote about the urine saga the other night, I forgot to mention my misadventure while searching for old urine numbers to compare to. We had received the “new” numbers, and I was looking through our box of medical papers to see if I could find the sheet from the last test so I could compare the numbers. My filing system is not exactly a model of organization. (Take a large box. Dump all papers into the box. Avoid interacting with the box at all costs.) So anyways, I’m digging through the box looking for anything that resembles a urine report. After several minutes of digging, I finally see a sheet of paper that has urine numbers on it. I started to scan the paper to try and find those magic HVA/VMA numbers that the world revolves around……and I couldn’t find them. I must have looked at that sheet up and down for several minutes before I realized that it was MY urine report from when I had gone to the doctor about 6 months ago. (I need a better filing system.)
As for the MIBG results. Here they are:
“There continues to be several abnormal sites of MIBG accumulation primarily involving the left side of the skull along with sites in the spine as well as the pelvis. These sites appear to be very stable since April. No discrete new sites are seen.”
Impression: Stable MIBG scan when compared with the prior study of 4/15/04.
So there it is in black and white. They do not see new disease sites, and they do not see any improvement.
Scott
Wednesday, July 7, 2004 5:37 PM CDT
In the immortal words of Mars Almond Joy candy bars……”Sometimes you feel like a nut, and sometimes you don’t!”
ATTENTION***ATTENTION***ATTENTION***ATTENTION
ANYONE WHO READ YESTERDAY’S JOURNAL ENTRY AND WAS ENCOURAGED BY THE URINE RESULTS; PLEASE TAKE A DEEP BREATH AND READ ON!
Today we received a call from the fu#$^&!#@ doctor’s office informing us that the &^%$&& #*@&^$ @#^#^$& !^^#&$#* &$&$*#@# ?>*&%# urine results are wrong! (NO, that was NOT a typo. And NO, you have NOT flashed back to one of the 6 or 7 previous journal entries from the last two years where I reported urine test screw-ups.)
This IS live. This IS real. THIS DOES SUCK!
The level of my anger has not been this high since……well I don’t know. But it’s high! (When Susan said I was angry after taking that test….I had NO idea what anger was.)
The last time we tested his urine, someone at the doctor’s office sent the urine to the wrong lab…………..again. (For the third or fourth time.) So, when I was comparing numbers in yesterday’s entry, I was comparing apples to orangutans. You CANNOT compare from one lab to another. Sadly there is NO standard for testing procedures or ranges for results. So, when you compare the most recent results to the last results that actually came from this lab……..his levels are higher. (This is a bad thing. If you believe in urine numbers.)
HOW IN THE WORLD DID I ALLOW MYSELF TO GET SUCKED BACK INTO THE GREAT URINE SCAM OF THE TWENTY FIRST CENTURY?
I MUST BE THE DUMBEST, MOST GULLIBLE, GLUTTON FOR PUNISHMENT THAT HAS EVER LIVED!
(It’s not like I have forgotten SWEARING off of relying on these tests for REAL information……..I REMEMBER doing that. So why then, have I allowed them to turn our world upside down…………….AGAIN?)
Incompetent, lazy, foolish, error-prone, knuckle-headed, inconsiderate, uncaring, weak-minded idiots! (And that was just describing me! Imagine what I think of THEM?)
As I sit here and try to find the words to properly convey how upset this has made me, I am for once….at a loss for more words. When I got the call today from Rebecca, I truly believed that my heart and head were going to explode from the stress and anger. I SHOULD HAVE KNOWN BETTER! I have failed myself, my family, and everyone that relies on this page for good information about Zachary’s status. I may not have created this nightmare, but you would think that after being burned 6 or 7 times by the same flame, that I would learn a lesson. But NOOOOOOO….I just look around on my hands for some new unscathed skin to torch and blister.
I guess the big lesson for all of you is this: Before you start to read an update, grab your condiments from off of the table…because you WILL need a large grain of salt to go with my journal entries.
Scott
P.S. Tomorrow Zachary will undergo an MIBG scan to evaluate his disease status. Had the urine debacle not taken place, we would have been able to get through this weekend with relative little stress as we wait for results. Now, we get to spend the next several days allowing our minds to wonder down forbidden roads. Such is the life of a family on this path.
P.S.S. Before any of you geniuses advise me to stop giving urine samples like I did for most of 2003, I have already considered that option and dismissed it. The protocol that we are on REQUIRES regular urine testing. The chair doctor can remove us from the study and prevent us from receiving medicine if we don’t follow the schedules of testing that help them to evaluate their drug. (Maybe I’ll submit some cow or horse urine for them to study.)
Tuesday, July 6, 2004 7:42 PM CDT
One of the prerogatives of being a parent of a child with cancer is that occasionally, you get to change the “rules” or even make some up as you go along. I’m sure some psychologist out there in computer land would evaluate this behavior as classical denial or some other fancy schmancy term, but I’m going to take some liberty on this one and keep the mindset that keeps me sane. (Sort of anyways.)
I am referring of course to ……(drum roll please)…..URINE TESTING!!!
(I can hear the collective groan from across our great land and around the world as readers are thinking……”Oh great….here we go again!”)
Well, YES. Here we go again! I don’t get to choose (actually I DO, but I don’t like to throw my weight around….actually I DO like to throw my weight around, but I like to throw the doctors a bone once in a while,) when and where we do testing. The new drug we’re on has a protocol. And that protocol has a schedule. And that schedule requires that Zachary do a 24-hour urine collection before the third round to check the HVA and VMA levels in his urine. (For those of you wanting more than abbreviations or further explanations about urine testing, I would suggest going back to the journal entries dating 5/02 and read your little hearts out. Urine testing has provided me some of the best material over the past two years.) Anyways. We gave them the urine last Monday and they never called with results. I used to be REAL anal about getting urine results quickly. Then I went through that phase where I wouldn’t give them his urine, because I didn’t believe in the test. Now, I pretty much give them his urine when they ask for it. They can bathe in it for all I care. So, going back to my opening paragraph, I have changed my mental rules for urine results. If the results are bad, then “Who cares?” We all know urine testing is about as accurate as hurricane predicting. If the results are good, well then “HURRAY….WE’VE SEEN IMPROVEMENT!” After all, the doctors DO ask for the urine…..it must be VERY important to the overall medical picture…..right?
So, that brings us to today’s urine results.
The VMA (Vanillylmandelic Acid) was 10.1 on the last test. Now it is 5.6. That represents a 45% drop.
The HVA (Homovanillic Acid) was 26.1 on the last test. Now it is 16.7. That represents a 36% drop.
His levels are still above their “normal” range, but “normal” for these folks has never been something that anyone could sink their teeth into. It’s more of an honorary range. It’s like seat belts on air planes. Has ANYONE ever survived a crash because they had their seat belts on? It is interesting that his levels have remained somewhat steady for quite some time, and now, after two rounds of Fenretinide, they have dropped dramatically.
All of this is somewhat moot. I have been working very hard at trying to become fully integrated into the Bo Mathis school of thought. (I will rewrite it for those of you that don’t read all of the entries.) “If he looks good and feels good, take that for what it is worth and run with it.”
Like the old saying goes: “If it quacks like a duck, looks like a frog, and smells like a skunk, then it’s probably an amphibious feathered smelly creature that should be avoided at all costs.” (I MAY have remembered that one slightly off of kilter….but you get the idea.)
Scott
Sunday, July 4, 2004 6:08 PM CDT
Happy Fourth of July everyone!!!
I hope everyone is having a safe and fun holiday.
We got to visit with my folks yesterday. We cooked out some burgers and hot dogs and just relaxed. Then last night we joined some friends for a local baseball game in Jupiter. There were some fireworks afterwards and the weather was great for us. Today we once again just took it easy. The fireworks start going off around 9pm, but we’ll probably stay home and avoid the crowds. Several of our neighbors have been lighting off fireworks, so we’ll get to see a little of that fun.
As many of know (and have mentioned in the guest book) I don’t usually take the time to respond to too many of the comments that are left. Every once in a while though, a comment “provokes” me into writing something. Diane from Kansas wrote an entry that suggested that I should run for office. “And Scott you know you should really consider running for office, heck any kind of office would do as long as you got to debate, I have a feeling you would be a real treasure.”
I want to make this PERFECTLY clear. I don’t intend to EVER run for ANY office. I’ve never HINTED that I would EVER run for any office. I have NO dreams of EVER thinking about running for ANY office.
NOW….having said that…….IF I should be elected, I intend to fulfill my duties to the best of my abilities. I further intend to make sure that ALL of the campaign promises that will have been made by my people WILL be followed through on!
(Enough of that nonsense.)
I’ve never been particularly philosophical. I took philosophy in college and didn’t get a whole lot out of it…..other than the fact that you can pretty much argue any point in philosophy will success as long as you keep a cool head and speak like you know what you’re talking about. Anyways, the reason I mention this is that in addition to NOT being overly philosophical, I am not overly superstitious. (Knock on wood.) I don’t read tea leaves, palms, bumps on anyone’s head, and I’ve never put too much faith into fortune cookies. (Until two nights ago.) So, there we were….sitting at our local Chinese restaurant minding our own business when the waitress brings us out our fortune cookies. Now, it is somewhat relevant to this story to mention that Rebecca was sitting on one side of the table, directly across from Zachary, and I was sitting next to Zachary. We each grabbed our cookie and began chomping away while we read what words of wisdom were being thrown upon us. Zachary’s read: “Reach out your hand today to support others who need you.” I guess this could be considered somewhat benign. However, it could also be considered quite profound. I have had many families tell us how they look to Zachary and his battle with cancer for inspiration, and how his successes so far have helped to keep hope alive in their personal battles. Then, there was Rebecca’s which read: “All the answers you need are right there in front of you!” Hmmmm. She was (as I mentioned earlier) sitting right across from Zachary. How many times has our good friend Bo said to me, “All I have to do is look at Zachary and see how great he looks to know that things are going good right now.”? Words to live by! That brings us to my fortune. After hearing those somewhat profound words, I could hardly breathe with anticipation as I cracked the cookie to see what special message was “saved” for me and me alone. I mean, there we were, all of us getting words of wisdom that could change our outlook on life and its meaning. I very delicately unfolded the paper so as not to damage it in any way. I could feel in my bones that the words would have an impact on me that would last for years, so I didn’t want to damage this piece of historical significance. And then the paper was fully opened and those magic words were beaming out at me from the tiny strip of paper………”You will get a great deal on a major purchase!” (How stereotypical…….give the Jew at the table a fortune that revolves around “getting a good deal.”) I should write my congressman or senator or someone. Oh well. That’s what I get for allowing myself to get sucked into the whole fortune cookie thing in the first place.
Scott
Tuesday, June 29, 2004 5:55 PM CDT
Zachary went on the road with me today. It gave Rebecca a break from mommy duties and it gave me another opportunity to spend the day with Zachary. (By the way, the old record of 3,928 “Are we there yet?” was broken today by Zachary with 4,227.) Zachary started his Fenretinide today, so we had to take the pills with us. It wasn’t really an issue; he is still swallowing 5 at a time. (Flashback again to horrific vitamin incident from my youth.) Zachary is still undecided as to whether he wants to be on the road with me again tomorrow. He has several calls out to blonde girls from around town. If one calls him back, I will be bumped from his agenda.
Back to the Zofran saga. Well, it seems that one of our kind visitors to this page emailed us with a possible solution to our dilemma. The mom had gone through a similar scenario and was able to work with an intermediary that is somewhere between the insurance companies and the drug manufacturers. This particular family had success in getting help with obtaining Zofran at a reasonable price. I called the contact and was pleasantly surprised at how sincere she was about wanting to help. Unfortunately, she was not able to give us any assistance. She DID however make an interesting suggestion. She said, “You would be better off if you “lost” your insurance and went on public assistance. Then we could help you out. I’m not supposed to say that, but it is the sad truth.”
It was like de je vu all over again. (Is that an oxymoron……or am I the moron?) So, we are back to that game are we?
LADIES AND GENLEMEN, WELCOME TO “HOW TO BEAT THE SYSTEM IN 5 EASY LESSONS.”
Give me a break please! Why is it that we are trying to work WITHIN the system, staying in the boundaries, not cheating, and we are being driven back to a place where stealth and deception are required? Somewhere between paying $0.00 and paying $700.00 for thirty pills is a happy medium that won’t bankrupt us or the drug company. So, I called our local congressional representative that had promised to work on my last idea of how to fix this nightmare of a situation. She has not heard back from the state or federal people. The last message she received was, “It is not within the rules or guidelines of the government to subsidize a family’s insurance premium to keep them off of Medicaid.” Great, let us spend ALL of the government’s money instead of just a little bit. THAT makes sense. It makes sense the same way that putting a band aid on an amputated limb makes sense. It makes sense the same way that shooting the cat to keep the dog from barking makes sense. It makes sense……oh hell……IT DOESN’T MAKE SENSE!
I’m sure that somewhere out there in la la land there is an influential individual that has the gumption to run with this and make the changes happen that NEED to happen so that other families out there don’t need to go through this nightmare in the same fashion. I WILL find that person. It may take me a lifetime to do it, but I WILL do it. In the meantime, I will yell and scream and write about it on here.
Scott
P.S. Thank you to ALL of the families that offered ideas and help with the Zofran thing. We were able through family members to procure enough pills to last for another few weeks or possibly a month.
There were a few families that offered (illegally) to order the medicine on their plan, and then let us have the pills for there $10 or $20 co-pay, thus exacting sweet revenge on the insurance company and solving our problem. (To protect the innocent….and not so innocent) I will NOT reveal any names. (For real this time…….this is serious $#@&.) We are VERY lucky to have friends that will go to just about any lengths to help us. How sad is it that the families in this battle have to re-invent the wheel to solve these issues? Isn’t it 2004? A recent study of the 13 most industrialized nations showed that the USA is ranked 13th in health care. (This is NOT a new problem. This has been brewing for many many years.)
Sunday, June 27, 2004 7:21 PM CDT
Boy the weekends sure do fly by down here in Florida. Yesterday was a lazy day for the Finestone family. We laid around for most of the day and just rented some movies. Today was church, and then Zachary had a friend over to play for most of the afternoon.
Tomorrow Zachary goes to his doctor to get his port flushed, and to get next weeks 210 pills of Fenretinide. We have been collecting urine all day for them. I hope the lab folks have a grand ole time with his urine jug. (Every time I write about his urine being tested I am reminded of an old, somewhat x-rated joke about a urinalysis machine…..maybe some day I will find a way to clean it up enough for all of the “sensitive” folks out there reading this.)
Zachary has still been feeling well. He is mostly bored now that his camp is over with. We heard today about a week long golf camp that is given at one of the local courses. It sounds like fun and it doesn’t cost too much, so we’ll be looking into that one tomorrow.
***IMPORTANT NOTICE***IMPORTANT NOTICE***IMPORTANT NOTICE***
IT IS NO LONGER NECESSARY TO SIGN THE GUEST BOOK WITH THE WORD “HI.” THAT WAS A ONE-TIME DEAL THAT IS NOW OVER WITH. ANYONE CAUGHT SIGNING THE GUESTBOOK WITH ONLY THE WORD “HI” WILL BE EXECUTED SAMURI STYLE! YOU HAVE BEEN WARNED.
Everyone can go back to lurking, hiding, sneaking around, darting in and out, or whatever it is you’ve been doing this whole time. I know that you are out there. And you know that I know that you are out there. And you know that I know that you know that I know that you are out there. SO, there is NO reason to pretend anymore. The courageous, kind, generous, loving, caring, mature, friendly folks will continue to leave us messages so that we know that we are being thought of. The rest of you pond scum don’t need to sign in if it is tooooooo much of an inconvenience for you. We’ll understand. Zachary will SURELY understand. We’ll just tell him that you WANTED to take the time to sign in and share an inspirational thought or greeting, but you were just tooooo busy with waxing your legs, or combing the hair in your carpet, or counting your floor tiles, or whatever it is you lazy inconsiderate folks do……when you SHOULD be signing this poor boy’s guest book.
Scott
P.S. Was that too much Jewish guilt?
Tuesday, June 22, 2004 6:42 PM CDT
[The journal entry dated 6/21/04 was supposed to be left alone until Wednesday evening. Circumstances beyond my control have forced me to update tonight.]
Please carefully check the list of names and locations below to see if you have been included:
Beth – MN, Mary – IL,Terry – PA, Teri – TN, Z-fan, Priscilla – TX, IMA Baboon, Kate – MA, Kelli - ?, Lori - ?, Sheri – PA, Heidi – MN, Judy – FL, Carol – WI, Tracy – IL, Frannie – OH, Kelly – Chicago, Ellie - ?, Becky – Perth, Kathy – OH, Rachel – WI, Tammy – MN, Judy – GA, Cheri & Katelynn – Canada, Katie T. – KS, Vickie – NC, Lynn – MO, Dad – Vero Beach, Marieke – Germany, Alabama Friend, Wendy – PA, Christine – Ft. Lauderdale, Karen – AL, Hop-a-Long Cassidy.
If you are fortunate enough to find yourself listed within the 34 names (I didn’t count the one as a double…it was one message) then you are among the elite of the 138 people that chose to answer my call to arms from the last journal entry. I made a somewhat simple request from the many folks that venture onto this page. I asked that everyone that reads the journal entry go into the guest book area and simply type the word, “Hi.” I ALSO SPECIFICALLY ASKED THAT NO OTHER WORDS WERE NEEDED!!!!!!!!!!!!
And what do I get for my efforts? Well let’s take a look.
138 responses
19 with NO mention of the word “Hi” ANYWHERE in their message.
85 that were smart enough to INCLUDE the word “Hi”, but were lacking in basic mental restraint and were UNABLE to hit ‘send’ without tacking on a bunch of OTHER words.
34 blessed souls that simply typed the word “Hi.”
Now, as you peruse the list above, you will notice that there are almost no men among names. Hmmmmm. (This could get ugly) (I could easily go either way with this.) (I could say the women are much smarter and better at following directions.) or (I could say that women are blind followers that cannot think outside of the ‘box.’) I don’t see anything good coming out of me taking the time to analyze what that means. I’ll just walk cowardly away from that one…..thank you very much.
So, as I read through the 138 responses I was pleasantly surprised to see many new names. Several people actually were visiting our site for the first time. (A few mentioned they were too scared NOT to send a message….something about a threat from me…..who knows?) I am truly grateful for everyone taking the time to let us know that they are out there……lurking…….in the darkness………like a roach hiding under a counter waiting for the lights to go out so it can scurry out and steal a morsel of food.
(Now I know what they mean when they say “Double blind study”….this was the blind leading the blind.)
Onward and upward….there are new battles and stories to tell. First of all I guess I owe everyone the PILL story.
Ok…….star date 1986 (close enough)….My friend Eric and I are sharing an apartment in Port St. Lucie, Florida. We have invited our girlfriends over for dinner. At some point during the evening we decide that BEST way to impress a girl is to have a vitamin swallowing contest. “Who can swallow a large, dry, chalky, vitamin, without using any water or drink to help wash the pill down?” (Ok…..in retrospect, looking back 18 years, this seems like a reaaaaaaaaaaly stupid way to impress a girl…..especially when you factor in that back then I had a ritual for swallowing pills that lasted 18 minutes, included 2 gallons of water, and required deep meditation.) So, here we are in the kitchen. All four of us. Eric and I poised to REALLY impress our girls with our mastery of vitamin swallowing……and we toss the pill into our mouths…….
I don’t remember if I knew immediately that I was in trouble….or if I actually enjoyed a second or so of ignorant bliss before the panic STUCK me like a bolt of lightning. (Shameless plug for our hockey team.) All I know is I made the CRITICAL mistake of forcing the pill further into the back of my throat, instead of spitting it out immediately and losing. Well, the chalky, dry, large vitamin hit that magic spot in the back of my throat….you know the spot……it’s the same spot that the dental hygienist hits with the x-ray bite wings when you’re getting checked out……and before I could do anything intelligent……like run for the bathroom and cower like the choking idiot that I was….a guttural belch that started in my toes proceeded to emanate from my mouth…followed closely by the vitamin. I’m not sure, but I think my eyes may have rolled into the back of my head, because my girlfriend NEVER looked at me the same way again after that. Whether it was the belch, or the site of the vitamin being shot across the kitchen at light speed………I NEVER tried that stunt again.
The lesson for you boys and girls out there is this: Never attempt a stunt that can be preceded with the words, “Watch this.”
On a “Cancer Sucks” note, we tried to reorder Zachary’s anti-nausea medicine Zofran. This is the dissolvable tablet that is Zachary’s safety blanket when he feels nauseous. Well, our insurance has changed since the last time we got this medicine, and the pharmacy called to let us know that our cost has changed. (Nice of them to give us the heads up.) So, we used to pay $0.00 for 90 pills. Now, with our new and improved insurance, the cost will be $1600.00 for 90 pills. Ok…..so we don’t need 90 pills right now. Zachary isn’t on chemo, so we can get by with 30 pills…..how much will 30 pills be? Oh, 30 pills will only be $700.00. Wow…..how do you pass up on the bulk discount you’re getting for 90 pills……where do I sign up? Let me see…..give me a couple of days to sell one of my kidneys on EBay first….ok? At $24.00/pill, Zachary better NOT be getting nauseous anytime soon!
AND……AND……just when I didn’t think that things could possibly get any worse….just when I didn’t think it was possible for ANYTHING to make me feel worse..
……just when…(oh heck…you get the idea)…..the mail came this afternoon. Nestled in with the bills and junk mail was a letter from Time magazine offering me a special rate on a subscription. (No, reaction yet?) What is wrong with that you ask? Well lets take a closer look at the letter….hmmmmmmm….the regular cover price is $221.20 for a one year subscription. They are offering ME a rate of $29.00 for that same year. And WHY do you ask am I eligible for this wonderful $192.20 discount? IT’S A SENIOR CITIZEN SAVINGS!!!! At the young age of 41, I am receiving Senior Citizen discount offer. (And I thought cancer sucked!)
Scott
P.S. For those of you that doubt the veracity of my last paragraph I am saving this offer for proof…….in all honesty…..I couldn’t make this stuff up if I wanted to.
Monday, June 21, 2004 5:47 PM CDT
Thank you to everyone that sent Father’s Day wishes. We had a relatively quiet weekend. On Saturday we were up in Vero Beach with my folks and Rebecca’s brother and his family. Yesterday we spent the day in Boynton Beach with the Mathis family, seeing a movie and cooking out. All in all it was a very nice weekend!
Rebecca and I have noticed lately that there aren’t too many guest book entries on our web page. We have also noticed that the counter on the front page is still registering between 250 and 400 visitors each day. Hmmmmm. This is interesting. I guess it all can be explained by one of the following scenarios:
1). There are really only 3 or 4 visitors each day, and these die-hard folks are checking in 100 times each.
2). People are not posting guest book entries because they fear that any comment may be taken out of context by the ANGRY Scott thus resulting in a rampage of insults and humiliation being visited upon them.
3). People are for the most part……lazy. Taking the extra 5.8 seconds to post a guest book entry takes away from their leg waxing time.
4). Most folks are upset with Scott for not posting witty or uplifting messages on THEIR Caringbridge pages, so they are boycotting this one.
Whatever the reason (no matter how lame it is) Rebecca and I are curious as to how many of these “hits” are legitimate. So, in the interest of science and ….and….whatever…..we are conducting a 3 day test.
THIS IS A TEST. THIS IS ONLY A TEST. IF THIS HAD BEEN AN ACTUAL SCIENTIFIC SURVEY, YOU WOULD HAVE BEEN NOTIFIED TO SIGN ONTO ANOTHER WEB PAGE. REMEMBER…THIS IS ONLY A TEST.
So, this is how it’s going to work. For today (Monday), Tuesday and Wednesday, everyone that reads this journal entry is required to sign into the guest book area and simply send a message that needs to read “Hi.” NO OTHER COMMENTARY OR WASTED KEYSTROKES ARE NECESSARY! Just type in the word “Hi.” You can sign it with any name and email that you would like to use. It doesn’t even need to be real, (for those of you paranoid types.) Please only send one “Hi” per person. You do NOT need to send one each day. We will then check Wednesday evening to see how many “Hi” messages we received. (It better match the hit count….or there will be heck to pay.)
So, is everyone clear on this? All you have to do is click on the guest book tab and enter a message of “Hi.” You do NOT need to type anything else. (A monkey could follow these instructions……unfortunately; there aren’t enough monkeys out there to participate.)
Scott
P.S. If everyone follows these simple directions I will post the embarrassing pill swallowing episode from my youth that was promised many weeks ago.
Wednesday, June 16, 2004 5:49 PM CDT
Wow! A whole week has passed since my last journal entry and no one has sent me a nasty message complaining about how lazy I have become. (Everyone is probably afraid that I might become ANGRY with them.)
Zachary finished his second round of Fenretinide Monday evening. He is once again super sensitive to the sunlight. (This coincides beautifully with his new day camp that he is attending. Camp Wet. Swimming in the ocean, fishing in the river, snorkeling, etc.) Other than the obvious sunburn under his eyes, he has done well to protect himself. He loves the camp and it keeps him out of trouble from 9am until 4pm. Yesterday he came home with a wicked rash on his thighs. It looked as though he had been exposed to sea lice. (For those of you that don’t have to deal with these wonderful creatures, they are actually miniature jelly fish that are near impossible to see with the naked eye. They get under your swim suit and start stinging as a defense to being “trapped.” Well, it turns out that no other child had any problems, so it is more likely that Zachary is allergic to the material in his one new bathing suit.
An interesting side note here is that I looked up sea lice last night when we still believed that they were the culprit. The first line of defense that was given on every web page was, (drum roll please)……SWIM NAKED! Evidently, these creatures will only sting if caught under clothing. I suppose if we had sent him to a Catholic day camp where priests acted as counselors, that would have gone over wonderfully. (9, 10 & 11 year old children running around the beach naked.) [PLEASE DIRECT ALL HATE MAIL REGARDING OFFENSIVE JOURNAL ENTRIES TO THE FOLLOWING ADDRESS:]
COMPLAINTS R US
2894405136990123 N. FLASTERBUMPHINGARTER AVE.
CHIPMUNK VALLEY, AZ 00001
(If for some reason your letter comes back undeliverable, then you probably missed a number in the street address and need to resend it with the correction made.)
SO, there we were on Sunday afternoon, sitting around enjoying a nice quiet day, when all of a sudden there is a knock on our door. Our friend Susan stopped by to say hello. (Of course there was another motive to the visit.) Susan is working on her mid-terms and needed to do some more testing on people to get the experience. Not being of sound mind, I once again volunteered to be the guinea pig. This time, ANGER was not the subject. Intelligence (or lack thereof) was. I was volunteering for a one hour I.Q. test. Susan ran home and got her paperwork and returned. We all decided to eat dinner before any testing was to be completed. Zachary has somewhat of a “sensitive” stomach from the new medicine he is on. So, during dinner, he excused himself and exited stage left into our bedroom and closed the door. About 3 seconds later the house shook on it’s foundation from a massive gaseous explosion that burst from his body. Rebecca, Susan and I all looked at each other in horror. Zachary returned to the table and was greeted with our laughter, which did little to for his self-esteem. He immediately tried to defend himself by saying, “At least I left the room!” My response to that was, “Zachary, there are people in California looking nervously at each other RIGHT NOW, wondering if that vibration in the ground they just felt is the precursor to the “big one.”” Surprisingly, this too did little to ease his embarrassment. (All of those parenting 101 lessons down the drain.) Well, we got through dinner and I started to take my test. After the one hour test ended………2.5 hours later……Susan started to tabulate the results. I was of course curious as to what kind of score I would get. Susan quickly corrected me and said that she was taking a progressive NEW style of psychology that didn’t use the “traditional” number scale that everyone was used to. That older style of scale was too humiliating for some folks, so a newer more “user friendly” scale had been developed. On this new scale, your score is translated into an animal class. Each class is then ranked so you know where in the animal kingdom you would fall. The order goes something like this:
Dolphin, Monkey, Ape, Dog, Pig, Horse, Cat, Goat, Cow, Kangaroo, Walrus, Seal, Moose, Squirrel, Duck, Chicken, Platypus, Parrot, Turkey, Toad, Fish, Butterfly, and Ant.
My score put me somewhere in between the Toad and the Turkey. I guess it could have been worse…..or better. Susan was supposed to further explain this new animal rating, but she somehow ran out of time and exited our house rather quickly. Oh well, I guess I did ok.
Scott
Wednesday, June 9, 2004 7:08 PM CDT
I looked up the phrase “Glutton for punishment” in my Webster’s Complete Desk Reference Book yesterday and was somewhat shocked to find a picture of myself staring back at me……….that should have been a clue.
Last night I agreed to take Zachary with me on my sales run for today. I have done this one other time, and on that occasion, Zachary and I forgot to bring his bag of goodies, (games, books, snacks) to keep him busy. On that day, everything went relatively smoothly. Today, Zachary was somewhat more restless than I anticipated. In retrospect, I’m thinking that I should have scheduled myself for some root canal, or perhaps a total body wax hair removal…..or better yet, a tonsillectomy done othoroscopically (spelling?) through the rectum. I don’t know exactly how many times I heard, “Are we there yet?” today, but suffice it to say, it was too many. (Actually we had a great day. I just needed something to write about. He was somewhat bored at times, but he read his book and played his Nintendo SP.)
So after my long hard day at work, I make it home in anticipation of a relaxing stress-free evening. And what do you suppose I find waiting for me on the counter? Today’s mail. Well, there really only was ONE letter for me, and it was a certified letter from our home owner’s insurance company.
Let me take just one moment to comment on certified letters. It is in my humble opinion that ANY certified letter from your bank, insurance company, doctor, neighbor, employer, employee, court, law enforcement agency, ex-spouse, or ANY taxing authority….is a BAD thing!!!! So, here I am with a dilemma. Do I open it and ruin a perfectly good evening, or do I keep it closed and ruin a perfectly good evening with worry? Hmmmmmm……ruin……or ruin…….choices, choices. These are the types of decisions that real grown-ups and leaders make everyday. Sadly, I rarely fall into either of those categories…..so I flipped the mental coin that resides quite comfortably in my head and opened the letter. Much to my surprise, it was GOOD news! The insurance company has decided that, in light of the fact that I live within 3,000 miles of the beach and am almost certainly directly in the path of any and all hurricanes that may come this way, that they are canceling ALL home owners’ policies for this region. Whew! And I was worried. I mean……these insurance companies are owned by shareholders. I would never want my need for insurance to stand in the way of these poor shareholders from profiting from their investments. I mean really…..if I actually NEEDED to make claim, it could drastically reduce the value of the company. I tip my hat to them. I guess they will be insuring homes that aren’t susceptible to hurricanes, tornados, earthquakes, flooding, fires, drought, locusts, wind, sun, rain, snow, freezing, terrorist attack, or any other manmade or natural occurrence. Who can blame them? I’m sure there are like….
……five or ten homes in Idaho or Arkansas that falls into their criteria.
Although, now that I think about this a little more…..I’m starting to sense a trend. Ever since Zachary was diagnosed, our insurance company has done everything in its power to try and drop us. (Read back from the early journal entries if you dare.) Why should THEY have to insure sick people? It is much more profitable to insure folks that never need any medical coverage. (I need to get into this racket.)
All kidding aside, I’ve devised a somewhat foolproof plan at getting revenge on BOTH the medical insurance and home owner’s insurance companies. Tomorrow I am going to become a 15 pack a day cigarette smoker. Now, I’ve never been a smoker, so this may take some getting used to. The plan is, by mid September when my home owner’s policy expires, I develop lung cancer. Then, one day before it expires, I “accidentally” leave a lit cigarette on the bed after we leave the house. BAM! Huge medical bills AND a new house! That’ll teach em!
Scott
P.S. One of the perks of having Zachary all day was to hear him talk about various subjects. One that you may find amusing was his “list” of girls he likes. Now, to save him HUGE amounts of embarrassment, the list that I am posting is the celebrity list. The list of local classmates is very confidential and will never be posted here….unless I run out of material one day. And….the winners are:
In fourth place……..Britney Spears
In third place……….Lindsay Lohan
In second place…….The Olsen Twins
In first place………..Hilary Duff.
(I’m thinking the Olsen twins should probably count as two, but I can’t tell them apart. But, if you are a stickler for detail…..he DOES favor blondes, so whichever is more blonde, is really in second…then the others all follow her.)
Tuesday, June 8, 2004 5:24 PM CDT
Well, it has been pretty quiet and calm around here….(THE LIGHTNING WON THE STANLEY CUP!)…..not too much to report (THE LIGHTNING WON THE STANLEY CUP!) We’ve pretty much just been taking it easy, (THE LIGHTNING WON THE STANLEY CUP!) and Zachary started his second round of the Fenretinide today. (BRAD RICHARDS WON THE CONN SMYTHE TROPHY – MVP OF THE PLAYOFFS!) Last night was another dull night in paradise (THE LIGHTNING WON THE STANLEY CUP!) we watched some boring TV and went to bed early. (THE POST GAME INTERVIEWS WERE FANTASTIC!) So, other than the hot weather we’ve been having, there isn’t too much to report…(THE LIGHTNING WON THE STANLEY CUP!)
Oh, by the way, THE TAMPA BAY LIGHTNING, IN JUST THEIR 12TH SEASON, BEAT THE CALGARY FLAMES IN GAME 7 OF THE STANLEY CUP LAST NIGHT. (For those of you that don’t remember, we’ve been fans for over two years now, ever since we were invited to a Christmas dinner with the team. The players were extraordinary individuals that went above and beyond the “call of duty” while spending time with the cancer kids that were able to attend. We’ve since attended a few more games and have come to love watching and joining in the excitement of being a fan of a team of this caliber.)
Scott
P.S. In case you missed the news or the morning paper……THE LIGHTNING WON THE STANLEY CUP!
Sunday, June 6, 2004 8:44 AM CDT
We are home again! Vacation was wonderful. Rebecca, Zachary and I had never been to Hilton Head before. It is a very nice island to relax on for vacation. The beaches are nice, the golfing is amazing, the tennis is great and the assorted other amenities are abundant. Getting together with family is always special to us, and having Zachary feeling so well was an added bonus for us. Seeing him enjoy his time with his cousins without having to worry about treatments or medicines was a gift from above.
Now of course it is back to reality. Tomorrow Zachary will get checked up at the doctor’s office, and then on Tuesday he will commence another week of 30 pills/day. We had been warned of his sensitivity to the sun from taking this medicine, and we spent most of our time on vacation applying one sunscreen or another, but Zachary still got a little too much sun on his face and has some dry skin there now as a reminder to us. I posted one photo from the trip of Zachary and his cousin Luke. I’m sure when my folks return from their trip I will have more photos to share with you, for now you’ll have to get by on what we’ve got from our camera.
I guess the big challenge for us this summer is going to be limiting Zachary’s sun exposure while on this new medicine. Going into the sunniest, hottest part of the year..
…….in Florida……….(maybe we didn’t think this out well enough.) Oh well….if it was easy to make these kind of decisions…..cancer wouldn’t be any fun!
Scott
P.S. Our Tampa Bay Lightning showed amazing poise and skill last night. Zachary's buddy Martin St. Louis scored the game winning goal in double overtime. The seventh and final game is tomorrow night in Tampa.
Tuesday, June 1, 2004 4:44 PM CDT
Here we are four days into our vacation and like an idiot; I’m taking time away from the sun and fun to update you guys. (I just don’t want anyone getting ANGRY with me for not updating all week.) Actually, my anger problem is in check right now. Zachary is having a blast with his cousins. Between the miniature golf, bicycle riding, swimming, kite flying, game playing, beautiful beaches and family time, he hardly has time to be bored. The place we’re staying in is amazing, and the island has just about everything you can imagine.
Once again I guess we’ve been blessed with some luck. Quitting the chemo was stressful for a variety of reasons, (many of which I’ve discussed at length here in prior journal entries.) It seems that over the past four years there have been scores of times that we were “holding our breath” because of an upcoming trip, or outing, or event. The hope is of course to obtain long term good results, but it never ceases to amaze me how we search for smaller victories of quality time every month or so. How many times have we planned a trip or event with the thought that we may have to cancel it. Two years ago we actually DID have to cancel a family reunion because Zachary had relapsed and he was receiving intensive chemotherapy that prevented us from traveling.
So we are lucky and happy and enjoying the moment!
We are also enjoying the moment of the Stanley Cup Finals! Our beloved Tampa Bay Lightning has tied the series at 2 games apiece, and we are rooting for them to win it all.
Scott
Wednesday, May 26, 2004 7:24 PM CDT
I’m told that the key to writing a “good” journal entry is knowing how and when to present the information that everyone is waiting for. Right now we’re not waiting for any test results, so I don’t need to worry about that. And Zachary seems to be doing well (knocking on wood again) on his new medicine, so I’m left with the everyday life happenings that seem to….well….happen!
I am proud to announce that today; Zachary was awarded his fourth consecutive Honor Roll certificate! He received all A’s and B’s this quarter. Now, I’m sure there are many parents out there in computer land thinking….”big deal”……”lots of kids made honor roll.” Well, this is true. BUT, for those of you unfortunate few that have children battling cancer, you KNOW how big these little victories in life can be. I don’t know if I was more amazed at his ability to persevere after missing so much time, or at his level of enthusiasm with making the honor roll. Rebecca took pictures for me, (I was on the road.) She said he was VERY excited about not only getting the award for honor roll, but also receiving an award for completing all of his Sunshine Math sheets. I’ve written before about the second guessing of decisions that we all go through, and how hard it is to not only make decisions, but to stick with them even when you know that there will always be negative consequences that may present themselves without warning. The decision to send Zachary back to school full time was one of these decisions. The upside seemed obvious. He would get to interact with his friends, and feel like a “normal” kid again. The downside was huge! The potential for daily exposure to a variety of life-threatening illnesses. This may sound like an exaggeration, but we remember all too well the precautions that we had to take four years ago when Zachary’s blood counts were very low and he was in danger of getting infections or illnesses that could be lethal. Well, the chemotherapy that we’ve been using for the past 22 months has kept his ANC between 350 and 1200……..not the safest place to be.
We were fortunate that during that period we only had to admit him for one serious fever. The upside ended up being enormous. Not only did Zachary thrive in the school environment, but he has become an avid reader. On his class field trip to Sea World last week, his teacher saw him reading while the other children were watching movies, playing, singing and having fun. She reminded him that the accelerated reader program was over for the year and that there were no more credits to be earned. He already knew this…..but the book was “really good.” He reads at night before bed……..(his own decision.) If you are still not impressed with any of this, go back to the journal entries from when I first started writing. Read the part that tells of what the doctors told us two years ago. The part about “letting him die” and “giving up” hits home everyday with us. And days like today lift us up and allow our spirits to soar with hope and gratitude for what we have been given.
We are leaving on vacation for one week on Friday. I don’t know if I will have internet access while gone, so don’t panic if you don’t see any updates after tomorrow. We will be back next Saturday.
Rebecca and I recently volunteered to help out a friend who is completing her psychology education. To protect the innocent and to maintain my honor as a journalist I once again refuse to name the friend as being Susan. If you read yesterday’s entry you will notice that I protected Laurie’s image by not naming her either. So anyway, Susan (AKA anonymous friend) was very close to completing her degree when Jake was first diagnosed. She is now pursuing that dream and is taking some courses. One of the courses involves testing of I.Q. and personality. So Rebecca and I (not being of sound mind) volunteered to be guinea pigs. We’ve been told that you can’t “fake” or “lie” on this particular test, it will somehow “know” if you try this. So, we told the truth. And what do we get for our efforts. Well, I am evidently “Angry.” WHAT THE HECK DO I HAVE TO BE ANGRY ABOUT? WHO ARE THESE LUNATICS CALLING ME ANGRY? DO I LOOK ANGRY? DO I SOUND ANGRY? NOOOOOOOOOOO… I DIDN’T THINK SO!!!!!!!!!!!!!!!!!!!!!! Rebecca is the lucky one…..she’s just in a state where she feels like she doesn’t have control of what is happening in her life. WHAT THE HECK IS THAT ALL ABOUT? We have control of EVERYTHING in our lives. Well, everything except Zachary’s disease. And then of course there is the lack of control of how he’ll react on these new medicines. Also, we sort of have no control over our finances….and then there is the inability to work full-time for Rebecca, because of having no control over when he might be hospitalized……..HOLY CRAP…..WE’RE SPIRALING OUT OF CONTROL INTO A PIT OF DOOM! (And for the record…I am NOT angry.)
I’m just so ANGRY that we have no control! And I’m so ANGRY that we can’t plan financially for the future. And I’m somewhat ANGRY that this disease won’t leave my son alone. And I’m sort of ANGRY that the doctors don’t give us anything positive to look forward to. I’m definitely ANGRY about all of the children we’ve lost to this disease…..but I’m not ANGRY….so STOP LOOKING AT ME THAT WAY!
Seriously though. Susan did some research and found that there aren’t many (or any) good studies or testing on families that are going through this. So, she MAY be in search of other ANGRY, SPIRALING OUT OF CONTROL parents that want to subject themselves to the humiliation of having their most intimate personal problems uncovered for ALL of the world to see. (Actually, results are confidential….I was just so ANGRY about being ANGRY that I felt compelled to write about it.) You don’t need to live nearby to participate. Who knows, maybe it will help the doctors figure out why I’m so ANGRY!
If you are interested in helping out……..either contact Susan through her email, or let me know and I will forward your contact information to her. And remember, take a deep breath……exhale slowly………and stay focused…….everything will be O.K…..as long as you don’t get too ANGRY!
Scott
Sunday, May 23, 2004 8:37 PM CDT
My new philosophy is, “A quiet weekend is a happy weekend.” Zachary is still taking his medicine like a champ. The only hiccup that we’ve run into is an apparent shortage of pills for tomorrow’s doses. I was there when we were given the pills, and I remember the doctor showing us that the bottles had 100 pills in them. Well, there are seven days in one week, and Zachary is supposed to take 10 pills, three times each day. That is thirty pills for seven days, or 210 pills. (This is starting to sound like one of those annoying word riddles: “If a chicken and a half can lay an egg and a half in a day and a half, then how many pimples does a kosher pickle have if it has been soaked in vinegar for an extra week?”) You get the idea. Anyways, the bottle had 100 each and they gave us 10 loose from a third bottle. SO, that would be 210 pills right? Well, unless Zachary has been sneaking out of his room at night so he can take extra medicine, we were shorted. We have watched him take the medicine every time. Even if you believed that we somehow let him take an extra dose one day (10 pills), that wouldn’t explain why we’re short 15 pills. (And for the record….we CAN count….he hasn’t taken any extra doses.) So I called the doctor this evening and he asked that we call back tomorrow.
As far as side effects go, we have had the diarrhea, and his face is starting to show signs of reddening and drying out. Other than that it has been quiet. (Knocking on wood as I type this.)
Today was a fun Connor Moran outing. They treated several families to a few hours of bowling at the Jupiter lanes. I haven’t bowled in many, many months. I am proud to announce that I DID bowl my high game today……181. I surpassed my old high score by 5 or 6 pins. (And before any of you doubting Thomas’ try to say anything, there were about 20 witnesses.) Zachary had fun and Rebecca got to visit with some of our friends that we haven’t seen in awhile.
One of those aforementioned friends was sitting with us and out of the blue asked, “How is that monkey-like pet of yours doing?” Hmmmm. That has to be a new record for one my jokes. One month and 23 days since I laid that golden egg and it is STILL out there making a believer out of some folks. I threatened to name the mom that was still being fooled, but discretion is the better part of valor, so I will NOT tell anyone that it was Amanda’s mom Laurie.
Scott
P.S. I have not forgotten about my embarrassing pill story…..it will appear here. I’m trying to work with my therapist so that I can properly cope with the trauma of having to relive that nightmare in my writings.
Thursday, May 20, 2004 7:41 PM CDT
Sorry for the lapse in journal entries….its been a busy week, both with work and medicine.
Tuesday morning we arrived at the doctor’s office only to find a standing room only waiting area. I think they were giving away lolli-pops or something. Anyways, we got in and they checked out Zachary. He now weighs 80lbs. (Mooooo.) His temp was fine so they accessed his port and drew some blood. Since we no longer get chemo, they were able to immediately de-access his port. The doctor gave us the 210 pills, and Zachary swallowed his first 10 right there in the exam room. Everything was fine. Everything was perfect. Everything was going according to plan. Everything was how it should be. Until. (Now, if you’ve read any of my entries in the past, the word ‘until’ pops up quite frequently. Like, “until the submarine blew up”, or “until the earthquake hit,” or one of my favorites, “until his head started spinning around and he started vomiting pea soup.” Well, where was I? Oh yeah, UNTIL, we were walking out and I quite innocently asked Rebecca if the doctor had said anything about Zachary having to stop taking Bactrim. (Bactrim is the medicine that most chemo kids take to prevent a nasty form of pneumonia that can be lethal.) The reason that I asked this question was because I had spoken with another parent the week before that had mentioned her son having to stop Bactrim while taking Fenretinide. So, Rebecca asked the doctor and he whipped out the protocol and there it was in black and white. “Any patient taking anti-bacterial medicines to prevent (blah, blah, blah)……..needs to switch to Pentamadine.”
Hmmmmm. How many of you remember Pentamadine? This is that wonderful drug that can be given in one of two equally wonderful ways. Option #1 is taking the medicine through the I.V. We have done this once…..ONCE. Zachary had a nasty time with it and spent all day on the oncology floor while nurses watched him quite carefully for further problems. Option #2 is even more fun than option #1, it involves a 15 minute inhalation therapy that chokes and gags the patient while they inhale the medicine. Zachary had done option #2 many times when he was first diagnosed and had (surprise) gagging and choking.
(I’m getting tired of having to educate all of you……as of right now, everyone needs to go to medical school and learn this garbage so I can just type my entries without having to “dumb” them down.)
So there we are getting ready to leave and now we are given two choices. Go over to the hospital and get the breathing treatment A.S.A.P., or return next week and get re-accessed and endure a whole day of I.V. therapy while risking more bad reactions. Zachary was of course very excited about the prospect of gagging and choking (NOT), so we begged and pleaded until he agreed to at least TRY the breathing treatment one more time. The nice thing about this drug is that both options #1 and #2 are only given once each month, while the Bactrim needs to be given three times each week and twice each day. So, we go through registration and get back to the pulmonary department where we run into another cancer family. The grandmother was in the waiting room waiting for her granddaughter to finish her Pentamadine treatment. This little girl (7 or 8 years old) comes bee-bopping out like she just finished having a party and says it was easy. Well, let me tell you. There was NO way on Earth that I was going to let that opportunity pass me by. I proceeded to ask Zachary if he was going to let a little girl show him up. (He didn’t like that.) The nurse came to get him and he walked away with her without looking back. (Usually one of us needs to accompany him, but he was NOT going to be outdone by any girl.) About 15 minutes later he came back with a smile on his face and told us, “It wasn’t that bad….it left a funny taste in my mouth but…..no problem.” So, there you have it.
Now, back to the Fenretinide. These pills are slightly larger than watermelons. (Actually they are about the size of a Mike & Ike’s candy.) Anyways. The first couple of days, Zachary would swallow one at a time and get all ten down pretty quickly. Now, he is swallowing FIVE at a time and laughing at me while he does it. (I have a slight problem with swallowing pills. Anyone that makes fun of me at this time will receive the FULL wrath of my fury…..swallowing pills can be hard….leave me alone.) So, once again he has risen to the occasion and shown us that he is a fighter.
Scott
P.S. Maybe some day I will write about a horrific experience I had with swallowing a pill about 19 years ago.
Friday, May 14, 2004 6:48 AM CDT
Today is the day that we hear from our doctor as to which day next week we will be starting the new medicine. (We’ve been promised that it will be Monday or Tuesday.) Zachary seems excited that the chemo has ended for now. We are hoping and praying that we will be able to take full advantage of the entire 30 cycles (90 weeks) that Fenretinide can offer. I’m sure there will be plenty of pill swallowing drama once we get the week’s supply of 210 pills, so stay tuned for that fun and games.
Speaking of fun and games, I’ve come to accept that Zachary will provide me with plenty of journal entry fodder on a daily basis. The trick is watching and listening carefully so you don’t miss the ‘gem of the day’ when it hits you!
Yesterday’s gem came in the form of a one page written essay that Zachary had done for school. His score was 84% (B). The ‘gem’ comes at the end, but I want the entire text shown here so you can get a better sense of his writing style. Here goes nothing:
I would like to go to Colorado or Pittsburgh because I love to ski. But sometimes it’s dangerous. You could break a leg or freeze. I would also like to go to Japan or Australia. I would like to go to Australia because I love animals. I would like to go to Japan because I like sushi. I would like to maybe go to Africa because I’m sort of black. They also hunt sometimes.
Ok. First of all, he has never skied. He has played in the snow, and we’ve talked about skiing, but he has never skied. Secondly, he DOES like sushi, so the whole ‘Japan’ thing kind of makes sense. Now, did I leave anything out? Oh yeah. “I’m sort of black.” Well, ok……how is someone “sort of black?” I’m guessing that if this were true, I probably would have known about it before yesterday. Maybe not, but probably. We have come to learn that he is confused about being well tanned. So, in a sense, he is somewhat darker than some of his fair-haired friends. AND, he does love rap and hip hop music….so there is that….but lets not stereotype folks. This whole entry reminds me of a conversation that I overheard Zachary having with one of his cancer buddies. They were talking about a third cancer buddy (who has a black father and white mother) and Zachary’s friend asked Zachary if that boy was black. Zachary thought about it and replied, “No, he’s just really tan like me.” I guess it’s nice to know that Zachary doesn’t have any prejudices against anyone. We’ve always tried to keep him grounded. With the hearing aides and no hair thing, the message has always been, “You don’t want people making fun of you because you look different, so don’t make fun of them.” Most of the time he follows that credo well. How we got from that, to “I’m sort of black”, I’ll never know.
Scott
P.S. There was some confusion about the reading level story that I posted. Those levels were grade reading levels. So the 2.3 means that at the beginning of this year (he is in fourth grade) he was reading at slightly over a 2nd grade level. Now he is reading at a fourth grade level. I hope that clears it up for you Leo. Stay warm.
Wednesday, May 12, 2004 4:46 PM CDT
Medical news:
I officially signed the consent form for the Fenretinide today. I pass by the doctor’s office on Wednesdays, so I arranged for the doctor to be there and we went over the protocol. It seems pretty straight forward. Based on Zachary’s size and weight, he will be required to swallow 3,984 pills 18 times each day. (Actually its only 10 pills 3 times each day…….
Now, I bet it doesn’t sound so bad after reading that first part….right?) So, 210 pills in one week and then two whole weeks off from drugs. We are supposed to get the first batch on Monday, so I guess we’ll start Tuesday morning. We will be checking blood counts every three weeks. (When we pick up the supply of pills.) We are also supposed to keep track of any and all side-effects….should they arise. (You know, the usual..... skin rash, headache, horns growing out of his head…..that kind of stuff.) There was an optional part to the study that would have had us checking his blood like 7 times a day during the pill taking weeks, so I opted OUT of that part. We don’t live close enough to the doctor’s office to be playing that game. The other good news is that since his marrow was clean going into the study, we are NOT required to do regular bone marrow checks. Had it been positive, they require bone marrow checks after rounds 2, 5, 8, 11, 15, 18, 21, 24, and 27. That’s a lot of bone marrow procedures! (If you read Zachary’s book, you’ll remember that he does NOT like that procedure.) We will probably check his marrow every 3 or 4 months, depending on how he is doing. The MIBG scan will need to be monitored though. I’m not sure how regularly, but probably after every three rounds.
[Interesting Note] If you go back about two years in our journal entries you will find several that deal with how we talked our local nuclear medicine dept. into obtaining the I-123 isotope for neuroblastoma MIBG scans. We had found out through a contact my father made that it was much better for these scans than the old I-130. We have had many, many local medical folks argue this point with us over the past two years, but we have stuck to our guns and insisted upon using the I-123. Well, today our doctor informed me that when he was at the most recent pediatric cancer symposium, they discussed these isotopes and have decided that the I-130 is obsolete, and that the I-123 is the ONLY one that should be used with these children! (I believe the word you are searching for is ‘vindication’!)
The fourth graders took a reading evaluation test at the beginning of the school year and Zachary was rated as reading at a grade level of 2.3. He was retested just recently, and he is now reading at a level of 4.0. We are very proud that he was able (on his own) to raise his reading level almost two full grade levels. He is somewhat disappointed that his classmates are reading at levels above him, but we have assured him that what he has accomplished is amazing……considering all of the school that he has missed and everything that he has been through.
On a much more serious note, Zachary complained to Rebecca the other day that his heels were sore. (He had been running at school and after school playing with his friends.) Rebecca suggested that it may be from all of his activities, or possibly from growing pains. So, in yet another example of our future Rhodes Scholar’s mental abilities, he proceeded to take off his shoes and socks so he could better observe his feet.
Hmmmmm……must be reeeeeaaaaaaallllly fast growing feet to be able to actually WATCH them expanding!
Scott
Monday, May 10, 2004 6:07 PM CDT
At approximately 3:42pm EST we received the call from Zachary’s doctors informing us that we have been accepted onto the Fenretinide study. (Yeah !) Now we are in the hurry up and wait mode as we wade through the logistics of actually receiving the medicine. Our doctor promises us that he is working diligently to make it happen quickly. We know that there is paperwork for us to sign, but other than that, we’re not sure what all is entailed. Virtually all cancer treatments come from a particular study. Whether the patient is on a tried and true formula or whether they are on an experimental drug, there is a protocol that dictates how much medicine will be given, and how long it can be given for. For example: The Fenretinide is given for seven days, and then there are two weeks off. That cycle of three weeks can be repeated up to 30 times (90 weeks) as long as there is NO progression of disease.
At this point in the journal entry, some of you may be wondering why I am bothering to give such mundane details to a very knowledgeable group of people such as yourselves. Well, in one of my more recent entries I wrote about another neuroblastoma family that we recently met through caring bridge. I had the chance to speak with the parents to compare notes about past treatments and future options. One aspect of our conversation that I found both intriguing AND shocking was when we discussed Irinotecan. (That is the chemotherapy that Zachary has been taking.) This family’s child had been on the Irinotecan study. I asked why they had stopped taking the chemotherapy after the study ended. They informed me that the study was for only 1 year, and that they were told that they could no longer stay on that chemo. Hmmmmmm. Well. Zachary was NOT on any study when we started this chemo. We had traveled to NYC to see if we were eligible for the monoclonal antibody study. The doctor up there had found too much disease and sent us home to use Irinotecan. We did two rounds with that chemo and one other “harsher” chemo and then returned to NYC. Zachary’s level of disease was still too high, so the doctor sent us home and suggested that we use the Irinotecan until another monoclonal antibody study opened up that Zachary WOULD be eligible for. (That second study was due to open at any time, so we were not placed on an official study with Irinotecan.) Well. It took another 6 months before NYC had the new study ready. We returned, and retested, only to realize that we no longer wanted that particular study for Zachary. We returned home and continued with the Irinotecan…..off of any study.
So, where am I going with all of this? Well. Zachary has completed 22 straight months of Irinotecan. The national standard, or official study says that patients should only be on this chemo for 12 months. Hmmmmm…. 22 IS bigger than 12, is it not? I mean to say, it has been quite some time since I have taken any math classes……maybe there is some sort of new math out there that I am not familiar with. Who knows? (I’m thinking that this revelation played a huge part in our decision to stop chemo. For all of you Monday morning quarterbacks out there in la la land……..read this journal entry carefully before inserting your foot into your mouth by second guessing our decisions. I’m NOT in the mood to make anyone look any more stupid than they already are…..so save yourself from the embarrassing barrage of insults that you will surely receive if you even TRY to pick apart our plan of action.)
I will keep everyone posted as to the progress of receiving this new medicine.
We finally got our faxed copy of the bone marrow report from California’s lab. They have the ability to look for cancer cells in parts per million. The report reads as follows:
Number of slides examined: 2
Number of tumor cells observed per 1,000,000 marrow cells: 0
Tumor conclusion: Absent
Comments: Number of cells examined 2,000,000.
(They ain’t seeing NOTHIN in his marrow baby!)
On a lighter note, Zachary loves to play tic-tac-toe. Even though he is VERY competitive, he realizes that virtually every game will end in a tie. He still likes to go through the motions. Sometimes someone will slip and a game will be won, but usually it is just a tie. Well, he LOVES to go first, so he can select the middle square. This of course gives him the best chance of capitalizing on a mistake and taking the game. Well, we went out for ice cream after dinner the other night, and the parlor had a tic-tac-toe board on the table to use while eating dessert. Zachary and Rebecca were going back and forth, taking turns going first, and tying game after game. I saw an opportunity and jumped on my son’s eagerness to gain any edge he can. I announced that I would not only let him go first, but I would give him two moves at once! And all I wanted in exchange for this was the right to place three symbols on my first turn. Well, Zachary didn’t give this scenario enough thought, because he jumped on the offer and quickly placed his two X’s on the board. I paused for effect, then placed my three O’s in a row and ruined his night. (Being smart AND a tease has its rewards!)
Scott
Wednesday, May 5, 2004 9:37 PM CDT
No news yet on our medical drama with the new medicine. We are also still waiting for definitive news from California about our bone marrow results. (I don’t want to get too far into it right now, but there IS a war brewing in my head with the doctors and support staff. I WILL devote some time in the near future to changing the way they communicate with families about the results for their children. The current system is unacceptable and I WILL be taking up this battle.)
About a month ago when Zachary missed three straight weeks of school, his class was given an assignment to write a story. They evidently worked on it over several days with guidance from the teacher. Zachary wasn’t able to start his until about a week and a half ago. He had to finish it in time to be turned in with his classmate’s stories. Zachary chose to write about cancer. The following text is his story in its entirety. His words. His thoughts. Please keep in mind that he has “remembered” events in his own way. The timeline may not be accurate, and some of the names and events have been “lost” in his recollection of the past four years. Here is his story.
WHY I HATE CANCER!
An original story by Zachary Finestone
Hey, my name is Zachary and I want to tell you my last four years fighting cancer. It all started when I was playing t-ball and my back hurt. The doctors said I must of pulled a muscle and just to take pain medicine for the pain. But obviously that didn’t work. After that I decided that I hate the doctors. Then we went to get an MRI. Then I started getting low fevers. After about two months of that they said “That’s it! We know what’s bothering Zack he has a tumor called neuroblastoma.” He also said that it is very rare and dangerous at this rate he may not make it. After that scare they said that to take my to a hospital called St. Mary’s. That was so bad. It was a “D”…..which means dreadful!
About five months later I had my first friend, Robert. He likes fishing and playing cards. A week after that I had my first painful bone marrow, since then I hate them. Especially when the nurses have to watch…..I’m surprised that they don’t freak out. As always I hate bone marrows…..except the milk of amnesia, that stuff is so coooooooooooooool! After about a month we met a new kid named Mitchell. He is cool. He plays every thing I play. Back then I was boring. When I first met Mitchell he had pneumonia and low counts. Plus fevers. And diarrhea. That mixed together makes him really sick.
When I relapsed which means (the disease came back) I missed a lot of school. I also hated that. And they stuck me with so many needles in my port, my arm, my hand, and my legs. After weeks of nausea and vomiting I was just about to hurt somebody. And also my hair was falling out. That stunk. My hair was falling out because of all of the chemo the nurses and doctors were giving me while I was staying at the hospital. The ride to the hospital was a long one and I almost always got sick in the car. Another bad thing about the hospital is the pillows are flat and the nurses don’t let you sleep all night. My room was always cold and I never liked the food there.
Since I was at the hospital so much, I had to leave me soccer team. They lost their best player…….ME! Not only did the chemo make my hair fall out but it gives me mouth sores. Mouth sores are VERY PAINFUL. They hurt when I eat and drink. When I get them the doctors give me magic mouthwash. It would numb the sores so that I could eat and drink. Sometimes it would not work and the doctors would give me morphine. The morphine would make me have bad dreams. It also made me grumpy. That would get me in trouble with my mom and dad every time. But when I was not being grumpy I was asleep. I would sleep during the day because of low blood counts. I sometimes sleep a lot during chemo.
But what makes me angry about cancer is……when I lose a friend or a family member. I have lost many people I know to cancer. I will name a few for you. Robert, Jalen, Seth, Maya, Jake, and grandpa Dan. It is a mean disease. I wish cancer was not real. I don’t think it is fair that kids get cancer and can die. I hope that I don’t join them in heaven. I wrote this book to tell you why I hate cancer.
This is about why I hate cancer!
About the Author: Zachary Finestone is a 10 year old cancer survivor that lives in Jensen Beach with his parents. Zachary continues to fight his cancer to this day. To read more about Zachary’s adventures go to his web page at www.caringbridge.org/fl/zacharyfinestone.
The end.
I know there are run-on sentences and mistakes….but I can’t imagine a story from him being any more “from the heart.” There are many pictures in the book. The cover shows a needle with a big line through it…..(like a no smoking sign.) The first picture inside shows him holding his back saying, “My back hurts still.” The second drawing shows two boys kicking a ball back and forth. Underneath it says, “That is me on the left.” The third picture is of the bed and pillow. It says, “Nooooooo. Not the bed!” The fourth drawing shows Rebecca and me looking down at him and his arms are up in the air as if to say, “What did I do now?” The last drawing is of a tombstone that has “R.I.P.” written on it.
Scott
P.S. Yes. I did buy shares of Kleenex before posting his story.
P.S.S. When he got his story back from his teacher, there was a post-it note attached that read: “You are the most amazing student I have ever met! 100 ”
Monday, May 3, 2004 6:36 PM CDT
We are still waiting for results from California. We are also waiting to hear from NIH about getting the Fenretinide on a compassionate basis. Our doctor will return from his trip tomorrow, so I am hoping that he will contact NIH about our request. As far as the California thing goes….aren’t they on Pacific Standard Time? Does that mean they are 3 hours behind us, three days, or three weeks? I never can keep that straight. (It must be the weeks thing…because this is taking forever.)
Zachary got selected to be one of the safety patrols at his school for next year. The safety patrol is made up of 5th graders that help students out of their parent’s cars in the morning, and they monitor the halls, making sure kids are getting to class without causing riots. Evidently a lot of 4th graders apply for the 12 or so positions and they have to get recommendations from several teachers. Zachary is very excited. He begins training tomorrow. I guess they expect the kids to remember everything they learn over the summer.
We “met” another neuroblastoma family yesterday. Evidently our story has made the rounds in Memphis and a family that is battling relapsed neuroblastoma with their son Dalton is looking into Protocel. They have just started a protocol of Irinotecan similar to what Zachary has been on, and they are looking for answers. Please keep this family in your thoughts and prayers. Dalton is eight years old and has been fighting this disease for a few years. The logical part of my brain (yes…I DO have one) recognizes that there are 550 new neuroblastoma diagnosis each year in this country. And, there are many other families that are battling relapsed disease. So, one would think that once you are “in” this community, you would get used to hearing of another family’s story. This is not the case. Each time I hear details of another family, I find my mind drifting as if in search of a Twilight Zone-like state where I can magically snap out of it and make it all go away.
It never goes away.
Scott
Thursday, April 29, 2004 5:25 PM CDT
We have not heard from California about our bone marrow samples. We have not heard from NIH about getting this new medicine on a compassionate basis. Patience is a virtue. (In other words….waiting SUCKS!)
Today we got back the results from Zachary’s FCAT testing. For those of you that don’t live in Florida, the FCAT stands for Florida Comprehensive Assessment Test. It is given each year to the students, and some years the results will have a direct affect on a student graduating to the next class level. This is NOT one of those years. However, we are trying to keep Zachary with his class so he doesn’t feel like he was left behind. I have written many times about how great of a job Rebecca has done in working with the teachers in keeping Zachary on track with his education. This is the first year that Zachary will have completed the entire year, and yet he has missed many weeks due to chemotherapy treatments and illnesses. (Kindergarten ended early when he was originally diagnosed in March of that year. He was not well enough to attend 1st grade until the last month of school. Second grade was interrupted in February of 2002 when he relapsed. 3rd grade was done entirely at home. So, even with all of the missed school, Zachary has managed to make honor roll three grading periods in a row! On the writing part of the test students are required to get at least 2 out of 6 to pass. Zachary scored a 3.5. Ideally students will score between 4 and 6, but we are still very proud of his efforts. Zachary has always been behind in writing. He missed so much of regular class where he would have gotten a lot of practice and attention in this area. In reading, 52% of other fourth graders in the country scored below Zachary. In math, 67% of other fourth graders in the country scored below him. So, he has shown that through all of the adversity and curves that life has thrown him, he can still persevere and succeed!
Last night we joined the Charlton’s for an emotional birthday tribute to Robert who would have turned 13 had cancer not taken him from us 1.5 years ago. All of us climbed to the top of the Jupiter lighthouse and sang happy birthday and then released some balloons. We were able to keep them in sight for quite some time as they soared upward and off into the distance. Before climbing the lighthouse we watched a couple of local fishermen fighting some large jacks in front of the museum. Robert was an avid fisherman so I’m sure he was watching Matthew and Zachary as they gawked at the large fish as they were reeled in.
…….the Rhinestone saga continues……
When we left off, the Rhinestone family was weighing the choices that were thrown at them and trying to decide what road they would travel. There have been many interesting comments in the guest book, some even suggesting that the Rhinestones simply lie about the supplement. Well, I’m sure that we…(ahem)…I mean the Rhinestones, will make the correct choices when the time comes. Meanwhile, Fred continues to go about being a ten year old. (What a coincidence…Zachary is ten also…..hmmmm.) He is happy to be in school, and he is hopeful that he will no longer have to endure chemo treatments.
Scott
Monday, April 26, 2004 6:02 PM CDT
Once upon a time in a totally made up make believe land called Acirema (hold it up to a mirror…you’ll get it.) there was a horrible disease called jockitchitis. This bad, bad disease was rampant throughout the nation and came in many forms, affecting young and old, men, women and children. There were people from all walks of life that were battling this disease. Doctors and researchers spent endless hours and billions of dollars looking for answers to the puzzle that was, jockitchitis. (If this is starting to sound like an analogy for cancer, it is COMPLETELY coincidental.) Many doctors and scientists came up with a system where they could “test” their new cures on patients by allowing them to take a special medicine when all other options had failed. Some patients were taking natural supplements (once again I feel obligated to deny that I am in ANY way referring to Protocel or any other supplement,) and yet other patients were taking nothing, and hoping for the healing hands of God to smile upon them. Some patients actually used a combination of these approaches to try and beat the monster that was jockitchitis. One family in particular, the Rhinestone family, (don’t even go there…it was the most logical name I could come up with……….and it in NO way is supposed to be us,) was using a natural supplement while trying a somewhat experimental drug that was hard on their son. His name was Fred. (Aha….I threw you off the scent by not using a name even remotely close to Zachary’s…there’s no way you’d ever know that I’m writing about us.) Anyway, Fred was tired of the hard medicine that he had been taking, and his family found out about a new experimental medicine that sounded like a good way to go for everyone. The Rhinestone family worked very hard with their doctors to get this new medicine for their son. They did special testing to make sure that Fred’s jockitchitis was at a level where it had the best chance of responding favorably to the new medicine. Everything seemed to fall into place. Then the unthinkable happened. Evidently many of the doctors around Acirema had little or no faith in the natural supplements that Fred was using. In fact, most of them were SO adamantly against the supplement, they stated quite assertively and frequently that the supplement had NO positive effect on the jockitchitis, and that there was no way that it could possibly have helped make Fred any better. The Rhinestones were not sure what was giving them the blessing of excellent quality of life, so they were happy to keep Fred on the supplement while trying other more modern treatments. Well, the doctor that was in charge of the new medicine was very excited about getting Zachary on her treatment, but there was one BIG catch. The Rhinestone family had to STOP giving their son the supplement that they believed had been a HUGE part in their son’s great progress. What confused the Rhinestone’s the most was the Hippocratic line of reasoning that was being used against them. On one hand the doctors were saying that their supplement was useless and that it had no affect on anything, and that it was benign. On the other hand they were being told that to take the new medicine, they had to quit their supplement because the doctors wanted to see results that were unaffected by outside medicines. How could that be? How can a supplement be BOTH useless and an interference at the same time? It made no sense. Either it is working and should be accepted by the doctors as a viable treatment option, or it is a fantasy that families can throw their money towards at their own discretion. WELL, the Rhinestone family was very discouraged and distraught and disappointed and many other words that begin with ‘dis’, because they wanted to give Fred the best chance for a good life.
[STAY TUNED FOR MORE ADVENTURES OF THE (TOTALLY MADE UP AND NOT REAL) RHINESTONE FAMILY.]
Scott
P.S. Everything is great with us…(eyes rolling)….couldn’t be better….(clearing throat loudly)…..love to all!
Friday, April 23, 2004 6:52 PM CDT
I don’t remember if I mentioned it or not, but last week we forgot to attend the Martin County Relay for Life. We have attended each year since Zachary was diagnosed, and it is always an emotional evening. Well, this year we just totally forgot. So, tonight we attended the St. Lucie County Relay for Life. We got to see a few of the families that we know from that area, and Zachary helped carry the banner on the survivor’s lap. (See new photo in album.) Once again it was emotional for me to see him out there walking with the other survivors when I never believed that we would get through another year. As a parent, you always hope against hope that one year of survival will always be followed by many more, but that one part of your brain always has to be there to remind you of what odds you are facing and what prognosis the doctors have given. So, despite all of the obstacles, here we are…walking that lap again!
We have a quiet weekend at home planned…..maybe some work in the yard…..a movie perhaps………….some time with my folks on Sunday…….nothing too crazy or exciting.
Scott
P.S. Oh, by the way, we did get bone marrow results from our local lab today. The lab in California is still reviewing what we sent them, and they can look at many more cells per million than our local lab, but we’ve always used the local pathologist. So, the results from today can be taken in reference to the ones that you’ve seen here in the past.
P.S.S. Did you actually WANT those results posted today, or should I just wait until next week when I’ve got more time?
P.S.S.S. Great, if I leave it at that, I might not get responses to the question in time to actually post results. And even if I do, I’d have to retype everything from up above for the folks that will have missed what I typed.
P.S.S.S.S. So, results it is!
P.S.S.S.S.S. LEFT SIDE: NO EVIDENCE OF METASTATIC NEUROBLASTOMA.
RIGHT SIDE: NO EVIDENCE OF METASTATIC NEUROBLASTOMA.
P.S.S.S.S.S.S. They’re not seeing ANY disease in the marrow at this time. The California lab may have something else to add to this when they take a good look at his samples, but we’ve never had a totally clean report before. The best we’ve gotten still had the mature cells present.
P.S.S.S.S.S.S.S. (This is the part where you can hoot and holler and jump for joy.) (Just don’t let Joy’s husband catch you doing it.)
Monday, April 19, 2004 7:31 PM CDT
Medical Update:
******TEST RESULTS******TEST RESULTS******TEST RESULTS******
The MIBG results are in and once again they have left us in a state of confusion.
The test showed uptake (or cancer cells) in the hips, spine and one side of the skull.
To better understand these results it is important to look back at the last few tests.
6/03 – Hips, spine, and one side of the skull.
9/03 – Hips, spine, and one side of the skull.
12/03 – No uptake.
4/04 – Hips, spine, and one side of the skull.
The radiologist looked back at the 12/03 scans and has come to the conclusion that there was too much uptake in the pituitary glands, meaning that the isotope didn’t get a chance to properly spread throughout the body. That fact, coupled with the fact that the 6/03 and 9/03 scans match exactly the current one, has led us to believe that he has been stable since June of last year. The bone marrow test that we are doing tomorrow will hopefully give us results consistent with the one we did in February. It is highly unlikely that Zachary had a “real” clean scan in December and is now lighting up in the identical sights that were active before. Especially considering that he has had NO other symptoms or pain in any of these areas.
The good news is that because of the positive uptake with the MIBG scan, Zachary will be eligible for the Fenretinide regardless of the bone marrow results. (Good results would be nice, but bad ones won’t preclude us from getting the medicine.) The doctor that runs the study from California will be back in her office tomorrow, so hopefully things will start to happen quickly once they receive the samples from tomorrow’s procedure.
On a lighter note, the doctor from California is Dr. Villablanca. When I mentioned her name at dinner tonight, Zachary asked if it was the same as the movie and candy bar. I had to be the bearer of bad news and inform him that; “No, that would be Willy Wonka, not Villablanca.” (True story. Once again he has provided me with material for the journal entry without even trying.)
We will be in WPB all day for the test. I won’t have results until Wednesday or Thursday. Be patient.
Scott
Saturday, April 17, 2004 6:02 PM CDT
Medical News:
Zachary is still doing his chemo. He finishes this round on Monday. We have NOT gotten any MIBG results…..the ONE doctor that reads those has been on vacation and didn’t get back until yesterday or today. So, we will probably have the results early next week. Tuesday is the bone marrow test, and those results should be available by the end of the week. Blah, blah, blah, blah, blah…….and the beat goes on.
Now on to a much more important subject. I’ve been meaning to address this issue for quite some time; however, I couldn’t find a way to approach the issue without upsetting people and causing mass panic. It’s one thing to write every day or so about cancer and other such mundane subjects, but this is much more serious!
I really don’t know where to begin. I don’t know how long this epidemic has been growing in our country, but it is time that we searched out its roots and put an end to it NOW! Left unchecked, I fear we will be slaves to this latest phenomenon that is…..
…….The “Punch Buggy – No Punch Back” game!
Zachary got hooked on this highly controversial game about a year ago. We very quickly put a stop to the actual “punching” that was taking place, but that hasn’t slowed the intensity or competitive nature that this game provokes. For those of you that aren’t familiar with this game, this is how it is played.
While you are driving around, anyone that spots a Volkswagen Bug, yells out the color, along with this phrase: (i.e.: if it were yellow) “YELLOW PUNCH BUGGY – NO PUNCH BACKS.” Then, theoretically, the “spotter” then has the right to punch someone. Well, even without the dreaded “punch,” the game is equally damaging to the mind. For example, I now find myself looking wildly for these stupid cars even when I’m driving ALONE! (What the heck is that all about?) And when it comes to Zman, well let me just say this…..he can be in the middle of a sentence about anything, ANYTHING, and he will spot a bug, yell out the sentence…and get right back to his train of thought. (Of course with Zachary, there are all sorts of rules that go in and out of play that make the game that much more difficult to follow.) If you or your family have not yet been afflicted with this game, my advice to you is DON’T DO IT! Save yourselves and forget the rest of us….we’re beyond help.
As with all diseases, it is of paramount importance to go back to the roots of the evil monster before finding a way to terminate it. I don’t remember playing this game as a young child. Rebecca does. (She is of course 13 years younger than me….but maybe I was sheltered.) How far back does this illness go? Where on Earth was it started? (Or was it started in Hell as a way for the devil to get back at us for inhabiting the planet that he was banished from?) Who came up with this madness? If you can answer any or all of these questions, you may be able to save us from ourselves.
I’ll leave you with this thought. If we can’t rid ourselves of this dreaded game, we may have to take much more drastic action. I’m drafting legislation that will outlaw the ownership of Volkswagen Bugs. It will include heavy sanctions for those that violate the law and drive these freaks of nature on our roads and highways. Maybe a 10-20-Life law like the gun law. Get caught owning one….10 years in prison…..get caught sitting in one…
…..20 years in prison…..get caught actually driving one……you get Life in prison.
I’m not resting until we resolve this issue as a group. The whole “cancer” thing can wait. This is important stuff people!
Scott
Thursday, April 15, 2004 4:41 PM CDT
Last night sucked! (The ceremony and video show about Jake were beautiful.) Having to see another family go through that sucked…..BIG TIME!
Mark and Susan Griffin have joined the growing list of board members for the CSC. They have lifetime exemptions from any dues that may ever arise, and they are officially on the team that gets to answer ANYONE that dares doubt the levels of sucktatude that cancer inflicts on a family. (Anyone questioning the validity of the word ‘sucktatude’ will ALSO have to answer to them…so BACK OFF!)
I wish there was some really brilliant or insightful thought about last night that I could write about, but I was overcome with emotion for most of the evening. Our hearts break every time we think about Jake being gone. By far, Zachary handled it better than anyone from our group.
I applaud all of the CSC families that were able to attend to be there for Mark and Susan. I know first hand how difficult it is to attend these ceremonies and to allow yourself to envision your child’s face on the pictures and remembrances in place of the child that is gone.. I saw the pain in the faces of the parents that have buried their children during the past year or two and have already lived this nightmare. All of it sucks. Being there together to watch out for each other is the only thing that gets me through the night. Knowing that there are families out there that will drop everything to lend a shoulder to cry on is a huge saving grace to this life we live.
Medical Update:
We have had quite the chaotic week, and I would love nothing more than to rant and rave about the idiots at the hospital, the pharmacy, to doctor’s office….etc. Unfortunately, I am drained from the past couple of days. I will say this. We are at war with Cardinal Pharmacies. They are an international conglomerate that supplies doctors, hospitals and pharmacies all over the world. They are the ONLY independent company that can make the isotope for Zachary’s scan. (The larger teaching hospitals make their own.) We have had nothing but problems getting this isotope for his scans. We ended up starting another round of chemo, (this really pissed Zachary off and caused major battles on the home front,) and then stopping chemo after one day because the nuclear medicine dept. was able to convince Cardinal to send the isotope one more time. So, Zachary did chemo on Monday. He had his SSKI drops Tuesday and Wednesday morning (protect thyroid), his injection yesterday, and his MIBG scan today. He resumes chemo tomorrow and will have it through Monday. (That totally messed up his weekend.) Then, he will get his bone marrow on Tuesday. (Those results will be over-nighted to California for review.) The most amazing thing through all of this is that Zachary is MOST upset about……(drum roll please.)
…………………………….Missing school!
He hates missing school. I don’t know if there is some really cute girl that he is watching all day, but he truly wants to be there with his friends. (I know he doesn’t get that from me….when I was his age….I would have moved Heaven and Earth to miss school.)
So, we will be around this weekend, taking it easy….trying to keep him occupied while he remains accessed with his needle and unable to do anything overly physical. (Blockbuster loves us.)
Scott
Saturday, April 10, 2004 9:04 AM CDT
******New Photo in Album******
Today is April 10, 2004. It has been nine days since I posted the journal entry about us receiving our new pet….the dreaded Xneumor. Well, it is with a heavy heart that I must report that we no longer are the proud owners of this exotic pet. Actually, it is with an even MORE heavy heart that I must report that the Xneumor never existed. He was completely and totally a figment of my demented imagination. For those of you that did a Google search to try and learn more about the fictitious creature….well…..I just don’t know what to tell you. I guess you’re gullible…….again. (Remember last year when I had everyone believing that we were moving to Alaska to reunite with a long lost sister that I had found?) Some of you were beginning to see through the masquerade that I had created, but many of you have written to us privately or mentioned the pet in person. I won’t name names, but you know who you are. (For THAT group, I have a special offer on a few bridges in NYC that were recently left to me by a great, great-grandfather…..I’ll only be selling a few of them…so act early to take advantage of this amazing offer.) I’m sure that next year all of you will be on guard for any shenanigans that I might come up with….so don’t be looking for an entry that tells of us moving to Alaska with our pet Xneumor. I do owe a debt of gratitude to Mark and Susan for finding the amazing photo of the blue-eyed Lemur that was used in the photo album to enhance the myth. (I won’t mention that Mark spent hours trying to learn more about our “pet” before figuring out that it was a joke.) I also am grateful to Bo Mathis for signing my guestbook as an Australian owner of a Xneumor to add validity and humor to the antics we were creating.
For those of you that feel gypped because last year there were some pretty overt clues that the story was a joke, I have to tell you that there were clues this year….albeit more subtle than last time. The number of families participating in the online Xneumor support group was 401. (4/01). Bo also had several clever clues in his entries. (The nickname “Nattos” was a reference to the pronunciation of “nada”…or “nothing.”) Also, the city where he was from, “Canfulmey” was meant to be “Can’t fool me.” You get the idea.
I’ve mentioned before that Zachary has a love for animals. Maybe when he grows up he’ll travel to some far off jungle in Southeast Asia and discover a new species of animal that he can call a Xneumor.
Medical update:
Last week was supposed to be a chemo week. We are supposed to recheck counts on Monday to see where we stand. I spoke with one of Zachary’s doctors yesterday and she is trying to get more information about the Fenretinide for us. She is pretty sure that we can get it on 24 hours notice, so we are working on the logistics of cost and insurance. We are very lucky to have this doctor. Zachary has had two different primary doctors prior to this one. The one that runs the practice is very compassionate, but can be somewhat timid when it comes to pursuing new therapies. Zachary’s first doctor was very progressive and upfront. He pulled no punches and told it like it is….ALWAYS. He was not one to hold your hand; it was all about the numbers and medicine. This new doctor seems to be a perfect blend of the previous two. She listens well, hears what our concerns are, pursues new ideas and therapies with vigor, doesn’t bad talk our Protocel choices, and is supportive and compassionate. We should know on Monday or Tuesday whether or not we will be doing another round of chemo…or just moving on to this new drug.
On a lighter note, young Zachary took it upon himself after dinner two nights ago to blurt out another gem for me to extrapolate upon here in the journal. We had finished dinner and Zachary had walked outside with Rebecca while I was paying the bill. The waitress asked how Zachary was doing and what kind of cancer he had. (Her cousin was a cancer survivor.) I relayed the story to Rebecca and Zachary when I got to the car, and Zachary said; “How did she know that I have cancer?” Hmmmmm. This brings up an excellent topic that has been written about on many web pages…including the always funny squirreltales.
YOU KNOW YOU HAVE CANCER WHEN……….(fill in the blank.)
1). …..you have more hair in your ears and nostrils than on your head.
2)…….you get nauseous from the rotation of the Earth on its axis.
3)…….you have more “battle” scars on your chest and body then most war heroes.
4)…….on any given day, your I.Q. number will be higher than your ANC.
5)…….you pay more attention to the number of platelets that you have then the number of Yu Gi OH cards in your deck.
(You get the idea….feel free to add to the list anytime.)
Scott
Thursday, April 8, 2004 7:33 PM CDT
Knowing where to start a journal entry is half of the battle. Usually I begin with the medical update and then I smoothly transition into the sillier stuff. I guess it never feels right to joke around and then try to be serious. Today’s entry starts on a note that doesn’t get anymore serious.
Early this morning our friends the Griffin’s lost their son Jake to this battle. www.caringbridge.org/page/jakegriffin For those of you that are fortunate enough to know this family, then you are VERY aware of how kind and caring they are. I’m sure that if you were to speak to a variety of their friends you would hear many compliments about how nice they are. We first met them at a cancer function where Susan “sold” us on the concept of Protocel. Because of that faithful day 16 months ago, we have gotten quality time with Zachary that probably would have been lost to this disease. (Read later on in this entry about that.) Please keep Mark and Susan in your prayers. Visit their web page and post a message if you can.
Medically there is not a whole lot to report. We are still waiting for the final word on Zachary’s eligibility for this new drug. Rebecca was able to speak with the doctor from California that runs the study, and she told Rebecca that it sounded like Zachary would be a great candidate for this medicine. This doctor was truly impressed with the number of rounds of chemo that Zachary has endured. She was also amazed that his MIBG scan has cleaned up by doing this chemo alone. (Rebecca didn’t mention the whole Protocel thing. The doctor asked about other medicines…..well….Zachary isn’t on any other “medicines.”) It is nice to once again hear an honest “off the cuff” opinion from a doctor that isn’t trying to “sell” us anything. (More confirmation that we have truly gotten something that most of these relapsed kids do NOT get.) I am hoping to hear from our doctor tomorrow about getting started on this drug. We will need to repeat the bone marrow test and the MIBG test….we are trying to get that set up for next week. I will keep everyone posted.
Little Z update:
I wish I had good news to report about our latest adventure down the exotic animal road, but sadly the guest book entry from Mattie was a day late and a dollar short. (Some guy from Australia posted some VERY good advice….AFTER we found out the hard way.) The aforementioned advice was to avoid (AT ALL COSTS) letting a xneumor consume or otherwise ingest caffeine. There are several fatal errors in judgment that we made two days ago. First, we kidded ourselves into believing that Little Z could sleep outside his cage without wreaking havoc on our house. Secondly, Zachary left an unfinished coke glass on the counter. You don’t need a degree in advanced mathematics to figure out what happened during the night. Little Z woke up for some reason and found the coke. He finished the glass and at some point after that went berserk in our living room and one bathroom. Amazingly, he did all of this without making enough noise to wake ANY of us from our slumbers. We have tried to recreate the cyclone of destruction that he caused, but needless to say, we have major work ahead of us to fix everything. The ripped up books and torn apart vhs tapes will be lost forever. The holes in the sofa and love seat will never be fixed to our satisfaction. The dead fish that were plucked out of the tank and disemboweled on our carpet will never be resurrected. The shampoo and liquid soap in the bathroom may never come out of the paint on the walls. And I’m QUITE sure that the claw marks on the ceiling will be a permanent reminder of our lapse in sanity. Zachary has been grounded for the next 319 years……and he is now on a strict caffeine-free diet. Little Z is lucky to be breathing. And lastly, Rebecca and I are looking around our once beautiful house trying to remember simpler times and an order that has been lost!
Scott
Monday, April 5, 2004 7:33 PM CDT
Medical news first:
Zachary was due to start chemo again today. As always the doctor’s office checks his blood counts to make sure his system can handle the drugs. His ANC was only 399 (needs to be over 700) so NO CHEMO TODAY! Rebecca and I are taking this as a sign from above that it is truly time to stop chemo and start Fenretinide. This is a drug that has been shown to give some benefit in children like Zachary with minimal residual disease. We are waiting to hear back from the doctor in California that is in charge of the study. If for some reason she does not allow Zachary to participate in her study, we can probably get the drug on a compassionate basis through NIH. We have our minds set that we DO NOT WANT to see what happens when you give too much of this chemo to a child. He has already surpassed by far, the number of rounds that other children have done, so we know that we are pushing the envelope.
For those of you out there that are reading this and having a difficult time understanding why we would stop a therapy that appears to be working, I will break it down for you. There really are only two scenarios that factor into the decision making process:
1). The chemo we are using is working and it is helping to keep the cancer at bay.
2). The chemo we are using is not working and the Protocel is the only thing keeping the cancer at bay.
Ok….here we go.
Scenario #1. If the chemo is indeed still giving us a benefit, then we are pushing our luck by trying to see how far we can go on it. Every doctor we have spoken to assures us that “the end is near” as far as benefit from this chemo. If we wait until that “end” gets here, then it will be much more difficult to get a benefit from a different therapy…like the Fenretinide.
Scenario #2. If the chemo is NOT working, then there is absolutely no reason to keep poisoning our son with it! Giving Zachary Fenretinide will NOT interfere with the Protocel, so why not add a new drug with little or no side-effects to help combat the disease that remains?
So, that is it. It really isn’t that difficult of a decision when you separate the parts into smaller thoughts. And if, IF for some reason (God forbid) we stop chemo and have progression of disease, then we can still go back to this chemo since it was still working when we stopped.
The Home front:
I am sorry for not posting a picture yet of Little Z. I know it will sound like a lame excuse, but our digital camera has taken a dump on us. I called the friends that gave him to us and they directed me to a page that has a pretty good photo of one. The link to that picture didn't work so i have placed it in our photo album as the third picture. I’ve done some more research and found that there is an online group of families around the world that exchange photos, tips, etc…about these wonderful creatures. Amazingly there are 401 families (including us) that are members of this group.
Scott
P.S. Thank you to Mark and Susan for the wonderful pet, and for all of the information about care and training.
Saturday, April 3, 2004 7:56 PM CST
Zachary is feeling great. He got to play with Matthew and Christina and Lars and Sarah today before we left for a small family gathering in Vero Beach. Zachary also got to spend most of the day with his uncle Ian and his great grand parents.
For those of you that have NOT read the previous journal entry that mentions our new pet, you may want to get caught up. This next part won’t mean much without having read that entry.
Wow, I didn’t mean to create some whole controversy with this new pet thing. I too did a Google search and was unable to find any useful information. So, I went to our trusty old Encyclopedia Britannica and found the following useful information. (Oh, and the new pet is a male, and its name is Little Z.)
Xneumor are pronounced (Zee-na-more). They were nearly hunted to extinction in the 17th century because Chinese and Siamese farmers and villagers believed that the animals were “stealing the souls of children in their sleep.” (This is where the modern day cat theory came from. It seems like we get everything from these people and their culture.) So, in the 18th century westerners found the remaining pack and were able to convince local farmers that the creatures were actually quite useful. They only eat fruits, nuts and berries, and they actually prefer the riper or spoiled ones, so they “work” a field of crops and take care of the unwanted harvest. Since that time, they have flourished, and about 35 years ago it was discovered that they make good pets. They look like a cross between a koala bear and a small monkey.
I could not find any information regarding how trainable or intelligent they are, but Little Z has shown that he is very aware of feeding times and knows when Zachary approaches with the food container that it is feeding time. He also will mimic us with a high-pitched chirp when we talk to him. When you hold him, he will follow you with his eyes very closely and he has a cat-like purr when scratched and rubbed. I am truly surprised that I have not seen more of these things around. I guess they are classified as exotic creatures, and that probably deters a lot of folks. Little Z is very clean and almost obsessive about his fur. (Like a cat.) I’m told that some people actually allow them to “roam” the house and stay out of the cage, but we have not ventured down that road yet. Little Z is very good about doing his “business” on the papers in the bottom of the cage, but after our doggie incident, I’m not looking to gamble.
We are up at my parent’s house tonight and most of tomorrow, so photos of Little Z will have to wait until tomorrow night or Monday.
Scott
Thursday, April 1, 2004 7:13 PM CST
First, second, third and fourmost (spelled that way for a reason) I am happy to report that we have not seen any sign of Fifth’s disease, chicken pox, strep throat, rheumatic fever, mumps, measles, hoof in mouth disease, or any other illnesses. Wasn’t it Dennis Leary that said, “Poor Lou Gehrig….he got Lou Gehrig’s disease…..how’d they not see that one coming?”
We have kept Zman away from school and those nasty germs all week. He has been going stir crazy at home, so Rebecca has gotten him out for a few excursions.
A few months ago Zachary started to ask for a new bedroom set. He wanted something a little more grown up…..with a full size bed. His old set is five years old; it is a bunk bed that fills the entire room, top to bottom. I told him that if he could sell his old set, I would be willing to look at new ones. Well, he convinced one of his friends to take the old set, so on Sunday we went to Kids Room to Go and found a nice set. It was delivered this week. Zachary is soooooo excited to have his room redesigned. He has even graduated from the Hulk and Godzilla sheet sets to a really cool Chinese dragon and symbol set. Tonight will be his first night on his new bed.
Thanks to our good friend Jeff, our yard is starting to really take shape. We should have a well drilled tomorrow and hopefully we will have an irrigation system too. When it is looking really good, I’ll post some before and after photos.
I would like to offer congratulations and high fives to our good friends the Mathis’s. Mitchell finished up his chemo on Sunday and had his port removed on Monday. His marrow and spinal fluid came back clean! Go check out his web page at www.caringbridge.org/page/mitchellmathis. When Zachary relapsed two years ago, this family was right smack dab in the middle of some hard chemo and rough times. We spent many days and nights with them in the hospital, and now Zachary and Mitchell are close friends. We are very lucky to have had them by our sides over these past two years. They have worked hard to get this “break” from treatment and no family is more deserving of it.
Next week is another chemo week and it is also spring break, so Zachary will of course not be in school. Lately we have become much more nervous when thinking about how many rounds of this chemo we have given him. We are considering a medicine that can be given orally and would not have much of an effect on Zachary’s counts or daily living. It has been found to “age” or “kill” neuroblastoma cells in some children with minimal residual disease. We had looked at it over a year ago, but at that time Zachary’s disease level was considered too high for him to benefit from the drug. Now that his scans are coming back clean and his marrow is showing only aged cells, we are thinking that this medicine could give us a break from chemo AND offer some continued “action” on our part over and above the Protocel that Zachary will be staying on.
As you read all of this and try to make heads or tails of where we’ve been and where we are looking to go, some of you may be confused as to why we just don’t stop everything and rely on the Protocel. Well, there are NO absolutes in our thought process. We have heard so many conflicting stories and outlooks for Zachary that it is very difficult for us to know exactly what combination or single therapy has blessed us with our excellent quality of life. Maybe the Protocel is the hero….maybe the chemo is the hero…maybe it has been a combination of the two. Maybe prayers alone have given us something that has eluded so many other children with Zachary’s illness. Maybe biting the head off of that chicken and bathing in pickle juice did the trick…….who knows? We DO know that the chemo cannot go on forever. We also know that the longer we use this chemo, the greater risk we have of causing other health problems that could be life-threatening. The other consideration is that if we stop now, while the disease is still not progressing, we can always go back to this chemo if he starts to have disease progression in the future. If we wait for progression while still taking this chemo, there is no going back.
Rebecca and I really want to give him a break from this poison. His chemo weeks are hard on him. Not as hard as some of the chemos that he has endured in the past, but it is never easy to see him brought so far down from these treatments. As always, we welcome your input. (We may not read any of it…..or listen to it for that matter…but we welcome it.)
Scott
P.S. Zachary has wanted a hamster since before Christmas. I have been firmly against this for many reasons ranging from them being nocturnal animals to me being the one that would have to care for it. So, it has slowly gone away as an issue. Well, one of our friends decided that we didn’t have enough excitement in our lives, so they bought Zachary a baby Xneumor. These creatures are from Southeast Asia and are cute enough, but I just don’t know how long Zachary will keep up the feeding and cleaning of the cage. The good news is that it’s not noisy and its fur doesn’t shed like a dog or cat. Its teeth are a little bit sharp, but it hasn’t bitten us while handling it yet……yet! It sleeps while we sleep and makes the cutest noise in the morning when it hears us getting up. Its claws are sharp when extended, but it keeps them in check and uses its tail for balance and clinging on to things. I’ll take some photos and post them on here in the next day or two. Zachary is already in love with this thing, so I hope it works out.
Monday, March 29, 2004 9:07 PM CST
The weekend is over and another week has begun. Yesterday we had a wonderful day. Our good friend Jeff got married in WPB and we were there to join in the festivities. It was absolutely a wonderful day for a wedding. Sunny, clear blue skies and nice light breeze. Afterwards we took Zachary over to his friend Matthew’s house so they could play together. We ended up having dinner with them and getting home late.
Today has proven to be a bit more of an adventure compared with the relative calm of the weekend. Lets see if we can bring you all up date……
FIRST, Zachary made it to school on time this morning…just slightly over tired from yesterdays hard playing….SECOND, Zachary’s teacher approached Rebecca about 1 or 2 hours into the school day to inform her that one of the other children in Zachary’s class was at the nurses office with what looked like FIFTH’s disease. THIRD, Rebecca contacted the oncologist’s office to get their opinion, FOURTH, they said Zachary needed an infusion of immunogoblin or is immunoghost, or maybe ammogunpowder, or immunoglobulin…….something like that…..anyways….where was I?.....FOURTH, FIFTH, SIXTH……????? I don’t remember…..well…….he gets to the doctors office, gets his port accessed and heads over the hospital……and who does he find there? Mitchell is there getting his port removed (Thank you Lord) and Cam is there getting his put in…(Lord…..you try our patience sometimes.) So naturally Zachary didn’t want his friends stealing all of the limelight today, so he gets exposed to some numbered illness. (Why FIFTH’s disease? Are FIRST through FOURTH already taken?) So, it takes until 4pm for them to start the 6 hour infusion of this medicine. About 30 minutes into the infusion, Rebecca finds a voice message on her phone from the school nurse informing her that the boy with THREEHUNDREDEIGHTYSECOND’S disease came BACK to school with a note from the doctor saying he doesn’t have that illness at all. Hmmmmmm Very curious going’s on…….Well, before yanking the plug on Zachary’s infusion and ruining his day by stopping a wonderfully fun 6 hour treatment, I make my way home and find a different message from the nurse informing us that she and another teacher are convinced that the boy did indeed have the illness, and that not only does another child in the school have it, but some other kids in our district have been diagnosed with it as well. At this point, we’re thinking we’ll keep the IV running and hope for the best. About 3 hours later, I finally get a chance to speak with Zachary’s teacher, and she informs me that at lunch today the staff was talking about the MANY kids with strep throat, the kindergarten kids with chicken pox, and the EIGHTTHOUSANDSIXHUNDREDTWENTYTHIRD disease that is going around as well. Her recommendation is that we keep Zachary out from school the rest of the week. (Next week is spring break and chemo anyways.) She promised to have his school work ready for us tomorrow afternoon….so he should be fine with keeping up. Now all we have to do is prevent him from catching any of these numbered and non-numbered illnesses. In other words….”First and foremost our Second priority during the Third and Fourth weeks of the month will always be to avoid Fifth’s disease at all costs.”
[Finishing another journal entry is like being in SEVENTH heaven.]
Scott
Friday, March 26, 2004 10:57 PM CST
Another week under our belts and I am happy to report that we have gone two whole days without the crutches. (Zachary wants the wheels back for his rolling shoes…they have been in time-out for several days. I told him that he wouldn’t get them back until he went at least 4 or 5 days without the crutches.) Miraculously he was healed. Wednesday was the ceremony for all of the children that made honor roll. Rebecca took video for me since I was on the road.
Tonight there was an impromptu gathering of some of the board members of the Cancer Sucks Club. Now, before anyone gets all up in arms, I was invited at the last minute and I was NOT the organizer…so don’t give me grief about not announcing it earlier. The four families that were there represented four very different stages of this disease. One family represented the tragic loss of one of our children, Robert. One represented a veteran relapsed case, Zachary. Another family is newly relapsed, Cameron, and the last family represents our family in remission, Mitchell. Four families from very different walks of life, thrust together into a world that none of us knew existed until a few years ago.
I must report that of all of the CSC meetings that I’ve attended, this was by far the most productive and serious, in regards to discussions and accomplishments. I have listed a brief summary of the highlights from this meeting below so everyone can get up to speed on where we stand on some important issues.
1). If you take a bite-size pretzel and a bite-size potato chip and eat them together, you will enjoy a unique flavor that is lost when eating either of the two alone. (Scott was credited with bringing this gem to the table.)
2). When ordering pizza for a large group, make sure there is pepperoni, mushrooms, plain, and at least one veggie-style pizza.
3). Fresh baked chocolate chip oatmeal cookies are always a hit. Make sure you bake enough when entertaining a larger group.
4). Chocolate covered key lime pie is STILL good. Eat them slowly though, splinters ARE a hazard.
5). Given half of a chance, any gathering of boys and girls that number over 6 and range in age from 5 – 10, will at some point deteriorate into a free for all yelling and screaming and chasing and running and falling and crying chaotic zoo.
6). Cancer STILL sucks.
Now, if you feel that these notes aren’t adequate to properly bring you up to speed, don’t hesitate to organize your own impromptu CSC meeting. (Don’t forget the chip trick though……it can make or break your party.)
Scott
Monday, March 22, 2004 7:37 PM CST
Well, I got urine results today and I also got report card results today. So, in the interest of democracy, I have decided that I will put it up to a vote here on the page for everyone to participate in so we can decide which results will be written about first. We will allow 3 weeks of voting to take place, and then we will have 2 more weeks to properly tabulate the votes. After that, we will be sending the results to Price-Waterhouse for verification and authentication. Once the final results have been properly verified and sealed, they will be sent by messenger to me so I can give you all the update that you are wanting to see. Of course, if the difference between the two votes is less than 3%, there will be a mandatory recount. (A recount in Florida……how bizarre.) In the event that a recount produces results that don’t vary by more than 2.5% off of the original vote, I will be able to update the page and give you the news that you want. If however, the second vote varies by more than 2.5%, we will start the whole process over again from square one.
(You didn’t think that I was just going to give the updates and NOT make it interesting.. did you?)
Urine numbers:
HVA last time was 26.8…..this time it was 26.1
VMA last time was 11.1…..this time it was 10.1
Zachary made honor roll again…getting all B’s.
So, what does this all mean?......Well for starters…it means that he is still doing well in school. As far as the urine numbers go…..they are statistically unchanged….(in my opinion anyways.) I have not received the normal ranges yet to see where we fall, so if those come in tomorrow, I will gladly post them here.
Zachary had us scratching our heads last nights. Out of the blue he started crying from intense pain in his shoulders. This wasn’t a normal sore muscle pain…but very intense pain from the slightest touch on the skin. If it was on just one side and on his chest, I would have immediately thought that we were getting a sequel to the shingles incident from a couple of years ago. This pain however, was on both sides, and on his back. His skin was so sensitive that he was cringing while trying to put pajamas on. My dad did some searching on the internet and found that improper use of crutches is one of the more common causes of shoulder pain….and that the pain can be intense like Zachary’s was. I had warned Zachary several days ago that he was not using them correctly. (I was an assistant technician in physical therapy for one of my summer jobs growing up.) He evidently didn’t heed my warnings….so he paid the price last night. Today he was using them properly…so hopefully the pain will stay away. He did wake up with leg pain again, so the crutches were in heavy use today.
Scott
Sunday, March 21, 2004 11:36 AM CST
I give and I give and I give and what do I get for my efforts? “It’s been three days since you’ve updated.”….or “It’s been a whole week since you’ve updated.” Well fine then! You want your lousy update…here it is.
(Was that too harsh sounding….I’m trying to be more aggressive and outgoing…..was it too much?)
Anyways, Zman has had ANOTHER interesting week. On Monday we had some rain. (On an interesting note, we installed gutters about 4 months ago, and I don’t think we’ve had a serious rain since. I’m guessing if I invested money into kites, the wind would disappear forever.) So, where was I? Oh, yeah, the rain. Well, our driveway gets a little bit slippery when it is wet, and evidently Zachary slipped and his knees buckled. I wasn’t there, but I’m told he tried to imitate a Flamingo. (You know…knees bending the wrong way.) Well, he was in pain for several days so we got him an appointment to be checked out. The doctor took x-rays and saw nothing of interest, so he prescribed crutches and told us to come back for an MRI if the pain persisted after another week. Now, without the gift of ESP I obviously have no way of confirming the level of pain that Zachary has had to endure in his knee, BUT, I am NOW convinced that when he goes to college he will major in drama and probably minor in guilt. Our little Oscar winner definitely knows how to “play to the crowd” when it comes to his injuries. Rebecca and I were convinced that once we actually bought the crutches, the pain would miraculously vanish. This was not the case. He used the crutches faithfully for several days before waking up this morning and announcing that he has been healed. “Praise the Lord…another miracle.”
Yesterday Zman and I went to the new pool hall that we have been frequenting and he was able to hobble around the table without his crutches to shoot, so I had a pretty good idea that we were nearing a full recovery. He was up all night with Irinotecan diarrhea and was just too tired or too rushed to worry about the crutches. (Irinotecan diarrhea is a blast. I would definitely recommend that everyone tries it out at least once to get the full experience.)
Zachary and I have been going to the pool hall at least once a week, and he is really starting to do well. When he takes his time, he makes some nice shots. He’ll of course never be better than me, but then again….who will? (Ooohhhh……Scott is bragging again…..who out there is going to be man enough to challenge him?) (I did say, “man”, but not to leave the women out…..you are more than welcome to come along to cheer for your man as he loses.)
Some of you may have noticed that I am nearing the end of this update and I haven’t mentioned urine numbers yet. Well, for one, we didn’t get them back yet, and for two....I still don’t put too much faith into their testing abilities, and for three, even if I DID trust their testing abilities…..I just don’t put too much faith into the reliability of urine numbers. Call me cynical, but after 4 years of mishaps and nonsense…..it gets old!
Having said all of that, I do promise to give all of you what you are looking for. Results. When I get them…you’ll get them. I cannot promise that they won’t be accompanied by some serious sarcasm though…….you’ve got to give me that.
Scott
Sunday, March 14, 2004 8:22 PM CST
You know, these web sites are great. They really serve an important service for families like ours. Being able to reach out and communicate with everyone and give them updates from the comfort of our home is a beautiful thing. Of course, I don’t imagine the wonderful folks at Caring Bridge ever imagined that sick demented guys like me would be using these pages to convey more than just the usual medical occurrences. I have to say that in addition to being blessed with a wonderful child, I am TRULY blessed to have a son that provides me with daily material for my entries. Now, before I continue, I feel obligated to provide one of my patented disclaimers. Most of you know that Zachary is not my biological son. Having said that, most of you that have met him know that he and I are very much alike. Whether he takes after me or whether I take after him can be debated for centuries without resolve, but the point is, most folks feel he is more like me than Rebecca. This next story reflects a part of our lives where I want to make it clear that Zachary does NOT take after me. Do you need to reread that last sentence? I am taking NO ownership for any of the comments that he made today.
It may come as a surprise to the women reading this page, but some men, (NOT ME,) feel it is cute, or manly, or clever, or something, to give their private parts a name. [IT IS IMPORTANT THAT YOU KNOW AND UNDERSTAND THAT I AM NOT ONE OF THESE KIND OF GUYS.] (With the possible exception of a lapse in judgment during college, I have never partaken in that particular ritual.)
So, here we are getting ready for our day of urine collection. Now, Zachary has peed in a variety of bottles, jars, and urinals during his various stays in hospitals. He has always required the help of either Rebecca or me because he was never able to hold the container and do his business. Well, he is older now. I guess I figured that a ten-year old could handle it. Especially considering the fact the 24-hour collection bottle is a massive container that he could rest on the toilet seat and easily manage. So, you can imagine our surprise and shock today when Zachary asked for help, and I said "You can do it alone."…and then those magic words that every parent dreams of hearing came blurting out from the perfectly straight face of our boy. “I can’t hold my Twinkie and the bottle at the same time.”
I want to make it clear that I have NEVER referred to my unit as a Twinkie, Ho-ho, Ding Dong, Suzie Q, or ANY other cream filled pastry for that matter! This one falls totally in his lap….(as it were.)
Well, the moral of the story is he did need help. It was either that or we would need to invest in some more mops and wipes to clean up the floor.
Scott
Saturday, March 13, 2004 7:57 AM CST
Bear with me here for a minute or two. I woke up this morning like I do most days, confused and tired and longing for more sleep. I turned on ESPN to try and find highlights of the Lightning victory over the Rangers last night, but this March. March means college basketball, so good luck finding highlights of anything else. So where was I? Oh yeah. I’m laying there in bed and all of a sudden I get the bizarre hankering to write a poem. (Before there are any collective groans from those of you out there in computerland that feel that I can sometimes be a little teeny wee bit sarcastic, this is actually NOT an attempt to be funny or clever. I’m pretty sure I know WHY I have taken this temporary turn towards the “dark side” of writing, but that reason is between me and my psychologist. So, here goes nothing. (And by the way, this is not being posted here for everyone to show that they can replace Simon Cowell on American Idol. Don’t feel compelled to rip me apart.
Life is good,
Life is normal,
Then there is pain,
And much turmoil.
The cancer is found,
It has attacked our child,
Our lives have changed,
And not just for awhile.
The testing begins,
Followed by chemo & hospital stays,
We all pray real hard,
To make it just go away.
Surgery, transplant and
Radiation are the norm,
This isn’t the life you envisioned,
When your child was born.
Then remission is sent down,
From the heavens above,
Like a sparkling angel,
Or a snow white pure dove.
The time without chemo
Or drugs and the pain,
Must be cherished forever,
Because it may not come again.
Then your world falls apart,
The cancer is back,
You fear the unknown,
While planning an attack.
The odds are against you,
A long shot at best,
But you will not give up,
You must fight like the rest.
There have been others before you,
That have fought the monster and lost,
The families that have been there,
Have paid the ultimate cost.
These angels will be remembered,
Their names etched into our brains,
They were passionate about everything in life,
From fishing to trains.
So we’re back in the saddle,
Fighting our own little war,
Trying to keep up the faith,
For the one we adore.
We walk in other’s footsteps,
And create some new ones too,
We pray our will and hope,
Will remain strong and true!
Scott
Tuesday, March 9, 2004 6:54 PM CST
Another several days have passed and once again I have shirked my journal entry duties and gotten lazy. We have been keeping busy, between work and play, but that is never an excuse.
Zachary is still feeling great! He is gaining weight, growing out of clothes, and doing everything a 10 year old boy should be doing. If ignorance was bliss, then we would look at our son and see a healthy happy (fairly well-adjusted) young man that has a bright future, and we would be happy.
Unfortunately, we have doctors weighing in with their opinions and keeping us on our toes with they’re insights and comments. As I mentioned in an earlier post, our local doctor sent the slides of Zachary’s bone marrow testing to NYC for their expert to review. You may remember me mentioning the phone conversation that I had with this doctor. He made it clear 8 days ago that “any cells seen in the marrow are to be regarded as malignant.” (I may be a little bit daft at times, but I’m pretty sure “malignant” is bad.) So, last night I’m innocently playing Pinochle on the internet and BAM, an email from NYC suddenly appears on my screen. I click over expecting some information, and this is what I found. “Thank you for sending us the slides from the bone marrow to review. Our specialist has examined the slides and feels the cells are ganglioneuroma, this is very encouraging.”
Hmmmmmmm. Does anyone else hear the Twilight Zone music playing in their heads, or is it just me? I mean….how in the world did we go from “malignant” to “encouraging?” I can’t think of a hypothetical sentence that uses those two words in reference to one subject. Unless of course you were to write something like this:
1). Your cancer cells are malignant, but I am encouraged by the fact that you have excellent insurance and I will surely reap a huge profit from treating you.
2). The Bad news is your cells are malignant. The good news is, I’m very encouraged by the phone call that I just received…I just saved a bunch of money on my car insurance by switching to Geico.
3). I am encouraged by the fact that YOUR malignant cells will in no way infect me or my family.
4). I am encouraging you to keep a positive attitude…even with those malignant lethal cells swimming around in your body that will most certainly kill you.
These of course are just a few examples of how you can tastefully use those two words together. I take great pride in knowing that there are not too many folks out there that can successfully incorporate those two words so tactfully and without offending anyone.
Now, before I drop the next big bomb on all of you, I feel it is my duty to ask that everyone that has frequented this site for at least 12 months please sit down and have your nitroglycerin tablets handy when proceeding. This next bit may shock you, and I don’t want any accidents. If you are currently taking ANY medication for a heart condition or if you are pregnant and have progressed past your 24th trimester (Ok..I’m no obstetrician,) then please STOP here and do not proceed!
We WILL be taking a 24 hour urine sample this weekend to be turned in on Monday at the beginning of chemo. I KNOW, I KNOW, I KNOW. You are probably remembering me SWEARING up and down that I would NEVER, EVER go through that nonsense again. Well, I changed my mind. (Between you and me and the wallpaper…. I really don’t care what the urine numbers are. But the geniuses in NYC are basing their regimen on several things, INCLUDING the urine, so there is just no escaping it.) I will NOT be making ANY decisions based on the incorrect, wholly inaccurate, completely worthless urine results, but others will be watching, so we shall see.
Well, I hope I made up for some of the “lost” time by giving all of you an adequate update. Thank you for the encouraging words and stay tuned for more……
Scott
Thursday, March 4, 2004 5:51 PM CST
I just realized that it has been a whole week since I last updated the page. (Slacker) Well, I wish I had some great excuses for all of you, but the sad truth is I’ve just been preoccupied with various challenges and dilemmas. Zachary finished his last round of chemotherapy on Sunday. (You may recall that his counts were not high enough last Monday to begin chemo, so it was pushed back until Wednesday.) Doing chemo over the weekend was not Zachary’s ideal way to spend his two days off from school, but we can’t control blood counts anymore than we can control the wind, the rain, or the insurance companies. I wish I could report that Zachary’s chemo round was uneventful, but we did have an incident on Saturday. The home nurse arrived and hooked Zachary up to the I.V. and realized that the saline was dripping out onto the bed. After a thorough inspection she was able to find the culprit. The connector that sits at the end of the tube running from his port was cracked. There is no way to replace the connector without replacing the tube attached to it. There is no way to replace the tube attached to it without replacing the needle attached to IT. And, sadly, there is no way to replace the needle without yanking it out and sticking him with a new one. (All of this without our beloved numbing cream because of the time factor.) There were tears and crying and it pretty much sucked. (What else is new?)
Zachary is always tired for a few days after chemo. That is why it is usually nice to have the weekend for him to recuperate before having to return to school. This week was an F.C.A.T. week, (testing for all students,) so we didn’t really want him to miss school. Our little trooper was able to complete his testing this week, and in a bizarre twist of how much he has grown up and matured, he excused himself Monday, Tuesday, and Wednesday for a one hour nap each day that he took at the nurse’s office before returning to class. Now, you may be thinking that he was just being devious and using his illness to get out of class, but if that were the case, he could have had the nurse call Rebecca and she would have gladly picked him up. He knows that he does NOT have to stay at school if he is feeling unwell. There are many examples that I could give to show how Zachary’s quality of life has been positively affected over the past year by how well he has felt, but one of the most telling has got to be his level of commitment and excitement when it comes to school and being with his friends. I am so glad that Rebecca and I worked to keep him in that environment.
We are still weighing the information about Zachary’s future treatments and working with case workers to see how the logistics of it all will come into play. I don’t expect to have any answers on this in the next few weeks, but I will do my best to keep everyone posted as to what we are thinking.
Scott
Thursday, February 26, 2004 8:06 PM CST
WOW….that is a new indoor record for me! (If you are wondering what I am babbling about, I did an update about 2 hours ago that I just pulled off of the page. Between then and now, a lot has changed.
The original update had all sorts of information about the conversation between our doctor and the NYC doctor. I wrote about how we were still not interested in ruining our quality of life by making Zachary really sick to try their therapy…..yada, yada, yada… you’ve heard (read) it all before. Now for the NEW improved information.
I spoke with THE man himself in NYC. Here is what we now know.
1). Good news – Zachary is the official record holder for the most rounds of irinotecan, 24….the old record holder was 21 rounds.
2). Bad news – Zachary is the official record holder for the most rounds of ininotecan, 24….the old record holder was 21 rounds.
(At this point you may be thinking that I somehow had a brain fart back there. But, think about it from our perspective, would you really want to have a child being in a place where they say, “no other children with this disease ever get to……your walls will come crashing down soon?” My dad always told me, “You don’t want to have your picture in the medical anomaly journal.”) Well, at least we’re on the “right” side of the curve.
3). If we traveled to NYC for 3 days of testing, Zachary would follow that with two weeks of treatment. Those two weeks (5 day treatment weeks) would more than likely be painful….very painful. After that first cycle of two weeks, Zachary would more than likely (98%) be no longer eligible for that treatment. (This is based on a variety of factors that are too complex to expound upon at this time….but suffice it to say, he would only get the one cycle.) Now, the doctor does say that he has kids that are 8 -10 years out from their treatment! (Yes, they are still cancer-free.)
4). We have also learned that children that get diagnosed after the age of 5 (Zachary was 6) can sometimes exhibit a neuroblastoma that progresses slower than in younger children. It can take much longer for the disease to “do its thing.” This is new news to us. We have always heard that once this disease starts progressing, it goes very, very quickly.
5). If we wait for the irinotecan to stop working (This is for those of you that doubt the benefits of Protocel,) then there would be disease progression and at THAT point, we would need to do the high dose chemotherapy for two months to “shock” the disease so we could THEN travel to NYC…..if that was the course we chose.
6) The NYC doctor is going to review Zachary’s current slides and see what he thinks. He has not seen any of the MIBG information, so it is not a complete picture.
I don’t think we are ready to travel back to NYC. We may be more inclined to go back in a couple of months. I don’t know if we would go up just for the three days of testing, or if we would dive in head first and commit to the two weeks of treatment to “get it over with.” The doctor also mentioned that if we chose the treatment and for some reason it didn’t work, we could always go back to the irinotecan at a later date. (We never knew that little tidbit either.)
We have a lot to think about over the course of the next few months. We know that they feel we are on borrowed time, being the record holder and all…..but we REALLY don’t want to squander our quality of life. Call us silly.
Very Occasionally and Sometimes Mostly Always Yours,
Scott
Thursday, February 26, 2004 6:23 PM CST
Under repair...give me a minute or two.
S.
Thursday, February 26, 2004 4:06 PM CST
We just received an email from one of our local doctors. She was able to speak directly with the doctor in NYC that is world renowned for his neuroblastoma expertise. The gist of the message was this: They are interested in viewing the slides from Zachary’s bone marrow more out of curiosity than a sense of being able to “see” something that our local pathologists have missed. He also made a comment about mature cells in the marrow. Basically his opinion is that ANY neuroblastoma cell (whether it looks mature or not) is a bad thing, because they are all almost always deadly. “According to him, there is still neuroblastoma there regardless of whether there is maturation or differentiation since neuroblastoma is neuroblastoma.” Unfortunately, this makes sense. I can see where any of these little terminator cells being present is a bad thing, however, none of that explains the improvement that we’ve experienced over the past year. I am waiting for a phone call from him to discuss this at length. He also said that he is “excited about the clean MIBG scan from December.” They are interested when we will be repeating that scan. (You may recall that we were scheduled last week for one, but the whole process got screwed up.) I’m thinking we’ll do one about two or three weeks after hell freezes over. (Just kidding…..we’ll probably schedule one within the next few weeks.) Once again, they are asking for urine numbers. AAAAAHHHHHHHHHHHHHHHHHHHHHHH
(RUN FOR THE HILLS, SAVE YOURSELVES, PROTECT YOUR CHILDREN….THEY’RE TRYING TO GET OUR URINE.)
[Insert lots of panic and mayhem]
There is an old joke about urinalysis. I don’t know whether I could clean it up enough to post it on here…but it’s a good one. (I’ll have to think that one over….maybe if you beg.)
So, the NYC doctor went on to say that he feels Zachary could benefit from a few rounds of treatment with the protocol that we were trying to get onto way back when. We know that it would require greatly diminishing Zachary’s quality of life by giving him high doses of very powerful chemotherapy agents. That chemotherapy process would drop his counts to zero at least two separate times over two months, causing fevers (hospital stays) and requiring daily injections of neupogen (to boost the white blood count.) All of this is very dangerous and can lead to secondary infection or lethal pneumonia. If we somehow survived all of that fun and games, we would then be traveling to NYC for one of the most painful protocols ever approved by the FDA. (Back and hip pain can easily exceed the ability of morphine to cover the pain. They can’t have the child under sedation because of other risk factors…….that would have been too easy.) So, the three of us are pretty much in agreement that this is NOT the course of action that we would choose at this time. I am waiting to hear from NYC to speak with the doctor and ask him some numbers questions about how many kids have been through this, how they are doing, etc. I also want to revisit with him the whole issue of our conversation from one year ago when he informed us that the irinotecan (current chemo) would never give us any improvement….it would only stabilize the disease at its current levels. So, THAT should be an interesting conversation.
Very occasionally yours again,
Scott
Monday, February 23, 2004 8:16 PM CST
Hold the phone, stop the presses, (insert any other useful clichés as needed.)
Just when you thought it was safe to celebrate the good news from the bone marrow report, the doctors decided to pull the rug out from underneath us. (There may still be a small remnant piece of fringe still under our feet, but the majority of the rug has been thoroughly yanked away.)
There are several “players” in the game of results. We have our trusted local doctors that we know have Zachary’s best interests in their hearts. Then there is the NYC doctor that is respected as the one of the leading authorities in the neuroblastoma arena. After him comes our old neuroblastoma doctor that we still keep in touch with via e-mail. So, those are the major players. Our local doctor saw the report that I mentioned yesterday and interpreted it the same way we did…..more improvement in the marrow. However, the NYC doctor emailed us back today and wrote the following:
Most often, in high-risk stage 4, like Zachary, “mature” neuroblastoma cells are still malignant, but it is true that very occasionally the cells really do appear like ganglion cells (ganglioneuroma in bone marrow), and even more rarely, the cells really are not malignant, as proven by long-term survival of such a patient (very exceptional situation). Much more often, I would say even most typically, patients/families are fooled into thinking the “mature” or “maturing” cells do not represent malignant, lethal disease.
So there it is. (What kind of phrase is “very occasionally?”) Is that even English? Very uplifting information, isn’t it? I mean, it’s not like just two months ago this same guy was telling us we’re in the middle of a partial remission……..????????????? I guess the good news is that we got to enjoy a whole 48 hours of bliss from this report before they started informing us how very unlikely it is that we are truly improving. WOW!
(I am licensed in the use of sarcasm in all 50 states….do not try this at home unless you are under the supervision of a professional sarcastic nutcase like me.)
Clinically, we are still looking good! He feels good, and is pain-free. His blood counts weren’t high enough to start chemotherapy today, so they will recheck them on Wednesday. (This is probably due to the medicine that he takes to avoid pneumonia…it lowers the counts.) Zachary slammed his finger in a door yesterday at a friend’s house and needed to have it immobilized over night because of the pain. (I even had to make a special trip to the pharmacy for the splint because he insisted that he could not move it without excruciating pain.) Today the doctor tried to examine it and he exhibited enough painful expressions to prompt the doctor to order an x-ray. Zachary got his x-ray, and the radiologist informed him that it was NOT broken, just bruised. So, about 20 minutes later while driving home, he showed Rebecca that he could now move the finger freely. (It must have been one of those special therapeutic x-rays that I’ve been hearing so much about.) Because his counts are so low, we will keep him out of school until next week.
When we first became distributors with my company, one of the first “big” products that we picked up were VMC fishing hooks. This company had no one selling their hooks in Florida and they were looking for a distributor to be what they called a “pioneer distributor.” They told us that they call us pioneers because we would be taking all of the arrows!
I kind of feel like our group of Protocel families are pioneers in a sick sort of way. We don’t WANT to be recognized for anything grandiose, we just want to find some direction from our oncologists on how to use this supplement to maximize its benefits. None of us asked to be thrown into this nightmare of “no cure”, “limited time”, “doom and gloom.” But, here we are…right smack dab in the middle of it! Throw us a bone guys… let us enjoy our good reports. Lets us revel in the moment without having to look over our shoulders to see you “tsk, tsk, tsking” us every time we try to improve our situation. It’s not like you’ve got anything better to offer. It’s not like you’ve got answers to our questions. It’s not like we’ve asked for the EXTRA torture of having to listen to you change your story every time something changes in our condition.
Very occasionally yours,
Scott
Sunday, February 22, 2004 11:29 AM CST
I’ve never been know for being a patient kind of guy, so yesterday I called the hospital and asked the nurses to ask the doctor to try and find a copy of our bone marrow report while making rounds so they could fax it to us to see in black & white. Originally, the nurses had informed us that the report was locked over at the doctor’s office and that we would have to wait until Monday to get our greedy little hands on it, but when we returned from an afternoon movie; there it was……waiting for us on the fax machine. We’ve read many of these reports over the years, and it is always interesting/difficult to interpret what exactly is being conveyed to you through all of the gobblygook that seems to be a mandatory part of these reports. So here we are….reading this report…..realizing that each doctor writes with his or her own style that can totally change the way you interpret the results. There is a note at the end of the report, and I’m not entirely sure whether it is in reference to the left side samples only or the entire sample….we will get clarification on this tomorrow. Anyways, the note reads: THE PRESENT SPECIMEN SHOWS NO IMMATURE NEUROECTODERMAL TISSUE ELEMENTS.
Sounds good to me!
I’ve got several “feelers” out there, in my own feeble attempt to find out what it all means…….but regardless of how the 4 or 5 different doctors “read” this report, we’re pleased to have Zachary feeling great, looking fine, and enjoying life.
Friday night we were invited to join a friend of ours from Publix with his son at the Martin County Fair to participate in the cattle auction that they have every year. Evidently there are enterprising youngsters all over the state that take part in this annual ritual of auctioning off there cattle and pigs that they have raised. It teaches them responsibility by having to care for and properly handle livestock, and then they have the added benefit of learning about bringing their animal to “market”. I’m told that the auction is mostly used to allow many of the local businesses to show their support to these kids and to help them financially for their efforts. Many of the “buyers” actually sell the cattle back to the seller at a discounted price, thus allowing the kids to earn some money for future projects. (Not having the benefit of having grown up on a farm, I’m not entirely “up” on this whole process…..I CAN tell you that the arena where the auction took place had a distinct odor that will not leave my nostrils any time soon.) I’ve never read anywhere about cows having much of intelligence quotient, but I found it quite coincidental that EVERY SINGLE ONE that was paraded around the auction area took it upon themselves to lift their tail and drop a load of smoldering, steaming, stink mud in front of us. I guess that’s life on the farm!
So, back to the auction. The publix folks have been very kind to our family. One of our friends is an assistant manager, and he got Zachary hooked up with the meat manager at our local Publix. Whenever Zachary is there, they let him feel like an employee….they even gave him a name badge and apron. His picture is up on the wall too……”Assistant Meat Manager.” So we were invited to the buyer’s dinner at the fair, and then Zachary was given the honor of bidding on two of the cattle. He was the winning bidder, so we were taken up to get our photograph taken with the cow, some fair officials, and Miss Martin County Fair of 2004. Zachary was watching Miss Martin County Fair more than the cow…..hmmmmmmmm (his teen years ought to be interesting.) They gave us a basket of goodies for being the winning bidder, and Publix was very gracious to allow us to keep it. After that, we took the kids around the fair to enjoy the rides. They had fun until Zachary got a little bit of motion sickness from one of the twirling rides…..so we called it a night.
On a somewhat sad note, it pains me to tell all of you that we are officially OUT of the Key Lime Pie Bar business. We will always believe in this product as a great dessert, but the company that we were buying them from evidently graduated from the ANTI-CHRIST SCHOOL OF BUSINESS. Their “word” in business had slightly less value to us than those smoldering, steaming piles of mud that I mentioned earlier in the update. Our protected area was anything BUT protected. They sold behind our backs, under our noses, and in other areas that I don’t DARE mention on a page where children might be reading. We have sold virtually all of our remaining pie bars, (don’t worry, I still have enough for our local friends to enjoy on special occasions,) and some of our equipment is sold too. Anyone out there that knows of someone looking for a cold plate truck let me know….it’s in great shape and has low mileage. (Has this page turned into a “swap shop?”) Anyways, life goes on………when you are in business, you roll the dice sometimes…….if you are lucky…..they come up the numbers you’re looking for…..if not…………………………………………………………snake eyes!
Scott
Friday, February 20, 2004 3:36 PM CST
The bone marrow results are in…..drum roll please……………..
“Totally clean on one side, and mature cells ONLY on the other.”
At this point in time I do NOT know for sure if this is an identical report to the one we got in December. That report was clean on one side and showed MATURING cells on the other. The doctor today said that she sees NO evidence of viable cells! That would be amazing of course! Our doctor is going to email a few neuroblastoma specialists to get their opinions regarding our current state of affairs. I firmly believe that we are officially smack dab in the middle of uncharted waters. If you asked 5 different neuroblastoma doctors right now, you would probably get 5 different opinions as to where we are and what will come next. (To be honest with you, I DON’T mind Zachary being a neuroblastoma anomaly, because it means he is still with us, feeling good, plugging away at life. They are definitely NOT used to seeing kids this far out on this treatment doing this well. We are blessed, we are lucky…….we have been given a tremendous gift of extended life that we cherish.
So where do we go from here. (Funny how many of these words seem eerily familiar, like I’ve had to type them many times before.) We will continue with chemotherapy next week and wait to hear from these experts to see what gems of wisdom they attempt to rain down upon us. Until then, Protocel will remain fixed in Zachary’s diet, (we’re upping the dose,) and we will keep on the chemotherapy regimen until we get a consensus on Zachary being truly free from disease. (Lots of ‘ifs’ and ‘maybes’ out there, but what fun would cancer be if it were easy?)
Scott
Tuesday, February 17, 2004 8:11 PM CST
WARNING***WARNING***WARNING***WARNING
THIS IS THE SECOND UPDATE TODAY. IF YOU MISSED THE EARLIER EDITION, PLEASE REFRAIN FROM READING BELOW THIS PARAGRAPH UNTIL YOU HAVE BEEN PROPERLY BRIEFED ON THE CONTENTS OF THE EARLIER ENTRY.
(If you are still reading these words and have NOT gone back to read the earlier entry then you either have no reading comprehension skills, or you are just plain stubborn.)
(Oh sure…..just throw your total lack of respect for my wishes in EVERYONE’S faces and keep on reading like none of the words I wrote up above even exist….great!)
Well, where do I begin…….in the beginning I guess? We got to the doctors office to have Zachary’s blood counts checked and to get his port accessed for the isotope injection today. His counts were great! His exam went great! The doctor said he looks great! Great! Great! Great! Even his accessing went great! So, we’re getting ready to walk out of the office and head over to the hospital to get the injection for tomorrow’s MIBG scan and Rebecca asks the secretary to call over to Nuclear Medicine to make sure they are ready for us. Nuclear Medicine gets on the phone and informs us that there is NO APPOINTMENT FOR ZACHARY TODAY! Hmmmmm. This is odd. Here we are, standing there with a perfectly good needle sticking in our son’s chest, expecting to actually use it for something other than a really cool clothing accessory, and we’re fresh out of luck. The isotope that is needed for this particular scan ONLY can be delivered on Tuesdays, and ONLY if it is ordered the week before, so they have ample time to manufacture it. So, someone from the doctors office dropped the ball and ….yada yada yada……we’re screwed. Nuclear Medicine said they cannot do the scan this week, because of the timing with the isotope. The doctor asked if we wanted to wait until next week, and reschedule. Well, as much as I like to torture Zachary by having ¾” needles jammed into his chest on a regular basis, I made an executive decision and opted for sticking with the bone marrow procedures for tomorrow and just bypassing the MIBG scan for now. The bone marrow is by far the most “telling” test that we do anyways. His MIBG scan was clean last time, so if the bone marrow is unchanged or improved, it is highly unlikely that the MIBG scan would show any new lesions anyways. And, since we are actually testing about 3 weeks ahead of schedule, we can always set up an MIBG scan for the middle of March if we really get a hankering for one. (Many of you are turning on your TV sets looking for news of some deranged dad going ballistic at a doctor’s office right about now. That was the old me. This is the NEW calmer me. Just because we’re facing a disease that the doctor’s say we won’t cure, and just because we have insurance companies that don’t want to pay for the services that they are contractually bound to pay for, and just because I can't stay in touch with my family because the cell phone company is plotting to undermine what little sanity I have left, and just because the doctor’s office can’t properly order a simple test, and just because my hairline is receding……there is no reason to freak out. Life is good. Besides, it could be worse….it could be raining.)
Scott
Tuesday, February 17, 2004 6:28 AM CST
We are off to WPB today to get the injection for Zachary’s MIBG scan tomorrow. We will spend the night at Quantum House and get his testing done tomorrow. In addition to the scan, he will be having a bone biopsy and bone marrow aspiration done. We should have results by the end of the week…….(I’m in no mood to play the waiting game over the weekend.) (Not that I ever am!)
Zachary feels great…no complaints about his back or anything else. He has gone through some sort of metamorphic change regarding school work that has me wondering if he has been replaced by an alien. He used to battle us relentlessly over work and getting assignments done. Now, he wakes up 30 minutes before his alarm goes off and stays in his room quietly reading a book or doing homework……what’s THAT all about? Maybe he doesn’t want to fall off of the honor roll list……I didn’t think that it was that important to him….. maybe it had something to do with the comment I made about tar and feathering him if he didn’t get good grades….I don’t know. Either way, he is putting in an effort that makes us very proud. I for one have never put too much emphasis on the results of his schooling……I never figured we would get this much quality time. I always looked at school as a means for giving him some sense of normalcy and quality time with friends so he could feel like a regular kid. Now that the pain in his back has subsided, I am much more confident that we will get the results we are praying for this week. (Besides, it is very draining to live each day waiting for the next axe to fall.)
The cell phone saga continues. Our new phones suck. (Not as bad as cancer sucks, but they HAVE achieved a level of sucktatude that deserves attention.) I was on the road last week with almost no coverage. I guess this week will be the final exam for this nonsense. My partner wants to give them this one last chance……..I’m pretty much over the whole thing…….and just looking forward to getting a different service.
Scott
Friday, February 13, 2004 2:26 PM CST
I used to like roller coasters when I was younger……what happened? I mean, the ups and downs were exciting back then…..they seem to have lost their luster. Anyways, Zachary’s back pain has magically disappeared! He was in need of pain meds Monday, Tuesday, and Wednesday, and then all of a sudden he no longer was complaining. This is a good thing for those of you that weren’t sure. Cancer pain does not usually just “go away” without help, so the pain he was experiencing was probably from over doing it this past weekend at the dance. Before the pain decided to leave our lives, we had already set up testing for next week, so we are going to keep those dates and get his testing done about 3 weeks earlier than we had originally planned. I should have some results by the end of next week.
I have written many times and many ways about the pain and frustration that this illness inflicts upon families like ours. And every time that I think I’ve written enough about it, another thought pops into my tiny brain and compels me drop it into all of your laps. This past week sucked! (I didn’t mean to sugar-coat that last assessment, but this IS a family page.) Not only have I been torturing myself with thoughts of funerals and misery because of Zachary’s back pain, but a few of our friends are having a really tough time with their child’s cancer….and on top of that, one of our friends had their child’s cancer relapse this week. I know that I should be better equipped mentally to handle a little back pain, but there is just no escaping the words that have been engraved into our heads by the doctors….”When his cancer comes back you’ll know, because it will present itself the same way as it did at original diagnosis…back pain.” Or there is always this gem…”You’ve pretty much exhausted the conventional therapies out there….we just don’t have any effective treatments to offer when the cancer comes back.” (My personal favorite…NOT.) So, we had our moments of weakness and allowed our minds to travel down those roads of doom and despair. The good news is that I’ve come up with a new axiom that describes my current train of thought…..for lack of a better name, I’m calling it:
SCOTT’S AXIOM (Tada…….flashy…isn’t it?)
Scott’s Axiom reads as follows:
THE NUMBER OF QUALITY DAYS THAT A FAMILY IS ABLE TO BUY FOR THEIR CHILD WITH CONVENTIONAL AND/OR NON-CONVENTIONAL THERAPIES WILL ALWAYS BE AT LEAST ONE DAY SHORT OF THE NUMBER THAT THEY WANTED!
(Not exactly Einstein-like thinking here….but it summarizes my thinking right about now.)
The other interesting quote that I have for you today comes from a novel that I just finished. (Don’t get too excited…..I don’t read non-fiction…this isn’t going to be some biblical quote or fancy schmancy theological quote that is used to stir up religious debates.) The quote is from a spy novel and is from a character that is discussing with another character how things just aren’t going their way….they are commando’s that have been trying to plan a raid…and they can’t get things to work out the way they want to. So the wiser of the two says, “IF YOU WANT TO MAKE GOD LAUGH, TELL HIM YOUR PLANS.” Now, before you all get up in arms with me and accuse me of being an atheist or something, let me explain what I GOT out of this quote. I take it as meaning that life does not always go as planned. You do your best and try to be prepared, but don’t expect things to always go your way, because life has a funny way of “happening.”
Scott
Monday, February 9, 2004 8:44 PM CST
This weekend was a lot of fun. Zachary finished with his chemotherapy early enough on Saturday for us to attend Zachary’s school carnival. They have games, prizes and lots of food. We’ve gone every year, and Zachary hadn’t been at school for two weeks, so he was anxious to see his friends and feel “normal” again. After that we headed down to Boca Raton to check into the hotel near the FAU campus. We napped for about an hour, and then headed over to the dance marathon. Zachary had a blast. We played games, danced, and enjoyed a great evening. He stayed up until midnight before getting tired. We headed back to the hotel and got 6 hours of sleep before getting up for breakfast and heading back over for the closing ceremonies at the dance. Zachary won two trophies, one for winning the hula hoop contest last year, and one for winning again this year. He is now the four time champion of the hula hoop. I actually got involved in the jump rope action. They were doing the whole double dutch thing, and I of course tried to jump in while two ropes were spinning in opposite directions. Thankfully no ambulance was needed to extricate me from the tangled mess that ensued. However, when they switched to one rope…..HA….I was able to complete the whole, “Teddy bear, teddy bear, turn around…teddy bear, teddy bear….touch the ground….teddy bear, teddy bear, tie your shoes…..teddy bear, teddy bear….be excused.” Later on I was able to keep up with Jeff and Rebecca spinning the rope at light speed! The whole experience was fun for all of us. The hard part as always was conveying our family story to the dancers. I used to break down and cry, now I just get choked up get a little teary eyed.
This morning when Zachary woke up he had a back ache. We gave him some Tylenol and he made it through the day easily. Around 5pm he started complaining again. His back was REALLY sore and his shoulder hurt too. Now, before we all start panicking, he DID play hard at the dance both Saturday night and Sunday morning. So, it more than likely has nothing to do with his cancer. Having said that, it always sucks when he has pain. Especially when the two other times he had back pain in the past four years were when he was diagnosed, and when he relapsed. We’ll keep you posted on this one….I promise.
Back to cell phone hell. I finally got a customer service rep on the phone at corporate headquarters that seemed to care about losing our business. I explained everything to her and she seemed sympathetic. I then told her that there were two options….and ONLY two that would satisfy me. I said that she could send us two of the new single channel phones at NO CHARGE and give us a full 30 days to try them out to see if the coverage is any better….if it wasn’t, then we get out of our contracts with NO penalties. Or, they could cancel the contracts now and let us leave without the penalties. Her reply confused me at first….she said, (and I quote)….”We can’t do that, but what we can do is this. I’ll send you two new single channel phones at NO CHARGE and give you 30 days to try them out…if they don’t work out, you can get out of the contracts with NO penalty.” Hmmmmmm….(this is where I cocked my head to one side like a puppy that hears a sound it can’t quite figure out.) (Didn’t we just say the SAME THING?) Not being one to split hairs, I agree to HER terms and today we received two new phones…single channel…..no charge. Now, these new phones needed to be activated by customer service. I called them to do both phones at the same time. (Mine and my partners.)
I can quite confidently tell you as I sit here and type this entry, that 4 hours and 13 minutes ago I spoke to the dumbest man on the planet……his name was Irving. If you meet any Irvings or know any Irvings…be careful…..!
Irving got all of the information about phone #1 so he could switch my partners service over…..it all seemed to go well. After he got done, he called that phone and left a voice mail to test it……then he had me call a special number to test its call out function. Once again….it worked smoothly. We then proceeded to phone #2, my phone. We went over all of the information and when it came time to test it…..”NO SIGNAL.” Irving tried to send a voice mail….but instead of it working….my partners phone rang?????? I talked back and forth with Irving for several minutes while he tried to determine what was wrong….and then it happened. He said what will probably go down in history as the absolute dumbest thing I have ever heard in my life. “Are you in a bad zone with no coverage?” I actually pulled the phone away from the ear and had to look at it….like maybe that would change things somehow. “WHAT THE HECK DID YOU JUST SAY?” He repeated himself, so I said…..”What is your name?” (This is where I learned he was Irving.) “Irving…..we are activating two phones….you know this….we’ve just successfully activated my partners phone not 2 minutes ago….that phone is all of six feet away from me with full bars…..and your asking me if I’m in a bad zone? Are you insane?” (He denied being insane.) He then spent the next 30 minutes checking and rechecking what he had programmed. Finally he got my phone working…and then my partners wouldn’t work………..he worked on it some more and finally got them BOTH working. Amazing.
We drove to the mall and got our old numbers sucked out of our old phones and injected into our new ones…….the true test will come when we start traveling around our territory.
Scott
Wednesday, February 4, 2004 9:03 PM CST
Zachary saw his doctor yesterday and his blood counts were great! They accessed his port and began chemo at the office. We will finish up this week’s round on Saturday. (The nurse is coming to the house all week.) We are keeping him out of school right now, just to make sure he is getting plenty of rest and doesn’t get exposed to any more bugs right now. So far he is feeling fine and sleeping a lot.
The cell phone sage got ridiculous on Monday. I called the company (Extel-nay) and spent two hours on the phone, talking with five different people after several transfers. Their bottom line was, they wanted a chance to open a “network ticket” to investigate my claims of “no signal”, “dropped calls”, and “poor reception.” I pleaded my case and basically said I was sick of not being able to communicate with my family when I needed to. It is one thing to not be able to do work or to talk with my partner about business, but it is TOTALLY unacceptable to be unavailable for Rebecca and Zachary. They claimed they understood and promised me that a network ticket would only take 48 hours. I was then instructed to call back Wednesday evening to check on the status of the ticket. They were going to try and determine whether my problems were phone related, or network related. (Sounds like a plan.) I also spoke with a supervisor that seemed genuinely sympathetic to my situation. She promised that when I called back tonight, they would have some answers. She also instructed me to spend $20.00 to have my program updated to the newest version. I did that yesterday, knowing that today I would be on the road traveling to the areas that have been tormenting me. Today was bad! No signal most of the day, dropped calls, etc. The really amazing thing about today though was the call that came while I was driving through West Palm Beach. (This isn’t some farm community in the middle of nowhere. It is supposed to be a major metropolitan area. I can’t imagine that there are tens of thousands of Palm Beachers running around with no service.) Anyways, the phone rang and showed a long distance call coming in. I answered the phone and of course could NOT here the caller. I tried for several seconds to talk, but the call was dropped due to lack of signal. I waited about 20 minutes until my signal strength was better and returned the call, trying to find out who it was……drum roll please….. it was Extel-nay! It put me through to their service area. I didn’t have time to play with them, so I made a mental note to call them tonight to check on the status of my ticket.
When I got through this evening to technical support, I explained the bulk of my story to the women who answered the phone. She proceeded to tell me, “We HAD a network ticket open on your phone, but the engineer cancelled the ticket because they couldn’t reach you on the phone today.” WHAT? WHAT? PLEASE TELL ME YOU DIDN’T JUST SAY THAT SOME IDIOT ENGINEER TRIED TO CALL ME ON MY PHONE.. THE SAME PHONE THAT I’VE BEEN TELLING YOU ISN’T WORKING PROPERLY, ONLY TO THEN DETERMINE THAT I’M NOT REACHABLE? PLEASE TELL ME IT ISN’T SO.
She was unsure as to how to reply. I flat out asked her how stupid her coworkers were. Why on God’s green earth would they open a ticket for a malfunctioning phone, only to call that phone…FIND it malfunctioning…and then cancel the ticket due to their inability to get through on it. Why wouldn’t they THINK enough to call our office phone. Once again she seemed flabbergasted. She basically told me that the reps that I spoke with on Monday had all lied to me. They lied about how network tickets worked, and they lied about letting me out of my contract if they couldn’t resolve the issues. When I gave her the name of the supervisor….she said that the supervisor could have been in any one of a number of call centers from Florida to Canada. I pushed her on this, finding it incredulous that they had NO system of seeing who was speaking with me. She did some digging and found the notes from the supervisor. She gave me HER supervisors name and number and promised I would get a call back by Friday afternoon. (Forgive me if I don’t hold my breath.)
Whatever scale is being used for measuring blood pressure will surely have to be revamped to track my current levels.
Scott
P.S. This weekend is the annual FAU dance-a-thon. The college raises money every year to benefit the Children’s Miracle Network. We have attended each of the previous three years since it was started. They recruit “dancers” to stay up all night to earn pledges that will go to the charity. There are games, songs, dances, musical groups, food, etc. We always have a blast. The fun starts Saturday evening at 7pm and finishes up around 10am on Sunday. The Children’s Miracle Network puts the families up in a local hotel so we can stay late and arrive early the next day. Anyone that is in the vicinity is welcome to join us for the fun! We will be there Saturday from 7pm to ?, and we will be there in the morning on Sunday to see the check presentation. Zachary always wins the hula hoop contest…..he has an uncanny ability to hula hoop without exerting ANY energy. Even with getting chemo on Saturday morning, I am quite confident that he will prevail.
Monday, February 2, 2004 9:13 PM CST
Home is a good place. It is definitely NOT the hospital. Zachary is still feeling well (health wise)…mentally, I’m not sure what is going on in that little head of his. Yesterday he was not happy with our decision of keeping him at home all day. We allowed him to have a friend over to play, we rented him a video game, and he was allowed unlimited access to TV. All of this was evidently not sufficient to keep his little mind busy. He was very upset that we didn’t want him to play outside. I explained that having just gotten out of the hospital, he was at risk of getting overheated or sick, and so we didn’t want him doing anything overly physical for a few days. At some point during the day, he got angry with me……I’m not entirely sure why, but he was angry. I left for about 20 minutes to get some wings for dinner so we could watch the football game, and when I returned, I was wholly unprepared for what was about to happen. We were trying to eat some dinner and Zachary turns to me and calls me “Scott.” Seeing the obvious shock on my face, Rebecca quietly explains to me that while I was out, he informed her that he wanted her to divorce me because he no longer wanted me as his father. I’ve never kept too close of a watch on my blood pressure, but I’m pretty sure that when blood starts shooting out of your ears and your hair is exploding out of your head and sticking into the ceiling, it is not a good thing. I proceeded to give Zachary the silent treatment to avoid saying something that I might later regret. After about an hour of this, Rebecca cornered Zachary in our room and explained how what he had done was wrong, and that he needed to fix it. He ended up cuddling with me on the couch and trying to “make nice.” After all that we have been through and especially after the past week, I was not in the best of moods that evening. I know that it was a momentary lapse in sanity that will probably not happen again, but it still stung like a bolt of lightning to the heart.
A few days ago I hinted that I was ready to “unload” on a certain cellular phone company. Once again, I wish to protect the innocent, so I am only referring to this company using my ultra-secret new highly advanced undecipherable code. I call it ‘Pig-Latin’, and the name for this company that I am using is………extel-nay.
Please don’t waste precious time trying to decipher this code…it will only frustrate you and distract you from the greater mission, which is to absorb my message and pass it along. Extel-nay IS the enemy! They are firmly aligned with the anti-Christ. We have been using their services for a few years now, having tried several other companies in search of one that can provide adequate coverage for the areas we travel in. One of my big ‘hang-ups’ is being on the road and not being able to reach Rebecca (or vice-versa) when I need to. (I’m sure a psychologist would look back and easily identify the source for this angst. On 3/16/00 when Zachary was diagnosed, I was on the road in Ft. Lauderdale and Rebecca was unable to reach me. In February of 2002 when Zachary relapsed, I was on the road in Sebastian…once again out of cell-phone range.) You don’t have to have that happen too many times before you start to get a little bit paranoid.
Our service has steadily worsened. We went from having excellent coverage with both two-way radio and cell phone calls, to spending most of the day without coverage. Dropped calls, no signal, weak signal, and garbled messages are all too common place. I travel to Lauderdale every Wednesday, and work my way north to home. I literally go through 6 major metropolitan areas without any coverage. To make matters worse, I am now thoroughly convinced that the cell phone company is singling me out for this torture. I have spoken with many people that have no problem with this company and travel to the same areas. Several months ago they got the bright idea that maybe my phone was bad. They charged me for a new one to see if it made a difference. It worked great for the 15 day trial period, and then rapidly deteriorated after that. Now, I will look at my phone to see how many signal bars I have to make a call, and see that I have 3 or 4 of the needed signal strength. I open the phone to dial and WHAM….no signal. I can be sitting at a traffic light at a dead stop, and lose the signal ONLY after trying to dial. How can that be? They must be watching me to time the interference perfectly. I wouldn’t be so paranoid if they would stop stalking and monitoring me! Anyways, if you are looking into getting a cell phone and haven’t made up your mind…..think twice before spending any money with Extel-nay.
Scott
Saturday, January 31, 2004 9:13 PM CST
WE ARE HOME!!!
The doctors stopped giving Zachary the Tylenol with codeine yesterday to make sure they weren’t masking a fever. They substituted a “magic mouthwash” to help with the sore throat. Since the one fever yesterday, he has been very normal. No low grade fevers or anything resembling a fever. So, we are home. Rebecca was able to clean out the hospital room and Quantum House and get Zachary home. I finished up my shift at the fair and got home right after dinner. Tomorrow we will probably stay in and take it easy. For those of you that like numbers and details, Zachary’s blood counts responded amazingly from the boost that he got yesterday. The doctor gave him a shot of neupogen to help bring his white blood count up. When we used to get those shots, he would be at zero or close to it with his ANC (absolute neutrophil count,) and it would take many days for his counts to jump up. Yesterday his ANC was around 180….very low…very susceptible to fever and infection. They gave him one shot……..and today his ANC is over 8,000. His hemoglobin jumped up two points and his platelets jumped up about 80,000. So, suffice it to say, he is in much better shape today. He’ll probably lose most of that ANC, but it is nice to see him respond so quickly when we need him to.
If you read my last entry, you probably noticed a postscript that hinted at another rant of mine regarding cell phone service in our area. I fully intend to convey that story, but I am tired tonight, so it will have to wait until tomorrow’s entry. I hope everyone has a great weekend, and for those of you watching the Super Bowl tomorrow night….enjoy. (I’m sure the commercials will be exciting.)
Scott
Thursday, January 29, 2004 2:43 PM CST
First things first. Thank you to everyone who has been signing Zman’s guest book. Rebecca prints out the messages each day and brings them up to his room. Contrary to popular belief, I AM staying at the hospital with Zachary. I was home earlier in the week only to get more clothing and medications. Since Saturday I have slept in Zachary’s hospital room four nights. I didn’t want Rebecca to burn out by having to get up all night with him and then to be on call all day while I was working. It is truly a team effort. Zachary plays quarterback, Rebecca is the place kicker, and I play left out. (Mentally that is.)
Where did we leave off with our last update? Oh yeah…..fever, fever, fever. Well, yesterday Zachary again had a fever when he woke up. The doctor examined him and determined that he probably has a combination of tonsillitis and pharyngitis (spelling.) Don’t you just love those combos? They’re the big rage now you know? You can’t go through a drive thru window without some young kid trying to get you to upsize your order to include the combo. So, it is only fitting that we have “upsized” our illness to be a combo. Hey, I want the most bang for my insurance bucks!
The pain from Zachary’s throat ailment has increased to where he now needs Tylenol with codeine to stave off the discomfort. Codeine can of course cause constipation, which of course can lead to other wonderful things. (Singing gleefully – the knee bone is connected to the thigh bone….the thigh bone is connected to the pelvis bone…..etc.)
Today brought on its own surprises. The morning nurse didn’t like the way Zachary’s lungs sounded. She felt they were somewhat diminished. So, when the doctor came in, he had himself a good listen too. He agreed that they were not filling up to capacity. (Personally I think we’ve done an excellent job of teaching Zachary to be frugal with everything from money to time, so it shouldn’t be that much of a surprise that he is being stingy with the air as well.) Anyways, they ordered another chest x-ray. At first they were going to rely on the results of the one from Saturday when we were admitted, but I reminded them that that x-ray was taken several days before he had any respiratory symptoms. They agreed! The x-ray came back negative, so NOW they are sending him home? How we went from the possibility of pneumonia to “you can go home”, I don’t know. Seeing as he had been 24 hours without a fever, we were tempted to take the doctor's offer and flee the scene. Fortunately, calmer minds prevailed. Rebecca and I had a heart to heart talk as I was heading out to work and decided that one more night, just to be safe, was the smart move. The doctor had also told Rebecca that if we went home, any fever over 101.0 would get us a free ticket back to our favorite E.R. About an hour after deciding not to go home, Zachary decided that if he was going to waste another night in the hospital, he might as well make the most of it by keeping everyone on their toes....his temp hit 101.1. (Was the extra .1 just to make sure we would earn our frequent oncology miles?) So, NOW we are looking at another couple of days in wonderful West Palm Beach. I know I've said it before many times, but I truly feel that having a child with cancer is JUST like having a party...except there are no games or fun and it sucks!
For those of you that frequent our lovely St. Mary’s hospital, you are well aware of the fact that large amounts of construction are taking place there. In fact, our beloved oncology floor is being redone for us. The temporary home for oncology is the old third floor next to PICU. All of the families out there that have been up to the third floor are familiar with the many problems that they have had with that part of the hospital. We arrived on Saturday to a room that was hovering around 32 degrees. The maintenance folks have been up there several times this week attempting to fix it, but they never seem to get it right. Last night one of the AC guys came in around 10:30pm to try and fix things. He did his best to try and convince me that both AC units that feed our room were off, and that NO cold air was coming into the room. I scraped some icicles off of my cheeks and proceeded to look around the room for the source of cold air that was torturing us. When I finally found it, a vent over the door, the AC guy got a worried look on his face and said, “That is not an AC unit, that is the intake for air being taken out of the room.” Not being one to argue mechanical logic, I simply made him put his hand up and feel the sub-zero air blowing OUT into our room. This did not sit well with him. Unlike me, he was not blissfully ignorant to the mechanics of how AC units and air flow work, so he was severely troubled by my discovery. He asked for a few minutes to investigate and left the room. When he returned, the news was interesting. Evidently we were BOTH right. The vent WAS blowing cold air, but NOT from an AC unit. It was cold air from outside that was getting back into the OUT vent and freezing out the entire third floor. (We are on the top floor, so the roof is our ceiling.) He could find no way to shut it off, so he opened up the large vent cover and proceeded to duct tape cardboard sheets over the opening to try and prevent cold air from getting in any longer. This accomplished only two things. It caused the cold air to find another avenue to our room, keeping us blue and shivering all night long, and it added an unsanitary layer of cardboard to our filtration of air for the room. Had I realized that latter fact last night, I probably would have hurt someone. First thing this morning I had the CEO’s office on the phone and left a message conveying me dissatisfaction with our amenities. (That’s a polite way of saying I was pissed off about our idiotic AC problem.) Within 15 minutes the head of the maintenance division for the hospital was in our room with a co-worker to figure things out. When I showed him the cardboard and described it as covering the vent from outside, that was when I was informed that it was not a vent to the outside, but rather our INTERAL air filtration system. (That loud BANG you heard this morning at 10:48am was my brain exploding with fury.) We were called down for the x-ray of Zachary’s chest, so Laurel and Hardy assured us that upon our return the AC problem would be solved. We got back about 45 minutes later to find them gone and the room very cold. Oh well……I’m sure they meant well.
Scott
P.S. Look for my next journal entry where I tear apart a well known cellular phone company for their ineptitude in providing service to our area. I want to protect the “innocent until proven guilty,” so I will NOT be using their name. I have once again developed a unique and undecipherable code to use in place of their name, thus preventing anyone from figuring out which company I am talking about. The code name for this company is……………..extel-nay. (I call my code “pig Latin.”, and plan on copywriting it once I have it perfected.)
Tuesday, January 27, 2004 9:02 PM CST
Ok…enough about the snow all over the country. Maybe I went a little bit overboard complaining about the AC in Zachary’s room……..but if I get one more weather update informing me about how many inches of snow or ice you’re going to get….I may just snap! (Actually it is kind of nice to hear about all of that nasty weather….it reminds me of why we live here in sunny Florida.)
I grew up in Pittsburgh and remember all to well what those winters can be like. I do NOT miss them at all. It is supposed to dip into the low 40’s tonight and I am not looking forward to it. The high tomorrow will only be 62! (Some of you northerners are probably looking at -62 with the wind chill….sorry about your bad luck.)
Well, I could type about the weather and stall all night long, but in the end, all of you came here to check up on Zachary. I wish there was good news of a whole day without a fever so we could get him home, but unfortunately that is not the case. Zachary made it through most of yesterday with no fever, and had he made it through today, they would have started chemo tomorrow and released him in the evening. Today however, he spiked a fever of 102.3! All of his cultures and x-rays are negative, so they haven’t found anything serious to worry about. The bad news is he won’t be going home for a few more days……..they want 24 hours with no fever. His WBC is coming up nicely, but his platelets have taken a hit from the double whammy of a fever and Motrin. He still has plenty to spare, but if the fever persists, it will be interesting to see what kind of game plan they come up with.
Thank you again for all of the prayers and good wishes. As always, we know we are not alone in the battle!
Bigdaddybooger
Monday, January 26, 2004 10:31 AM CST
Quick update #2.
Saturday night was fun…..sort of like getting tarred and feathered by one guy, while another is carefully inserting bamboo under your finger nails.
When I typed the journal entry from home while picking up clothes, I wrongly guessed that Zachary and Rebecca had already made it up to a room. When I got back to the hospital around 11:45, they were still in the E.R. I relieved Rebecca so one of us would get a real night’s sleep and sat down and waited for something good to happen. Around 1:00am they finally took us upstairs. The good news was they had a room for us with a couch bed for me; the bad news was the AC was not working properly, so it was about -14 degrees in there. (Ok……I may have exaggerated; it was closer to -2.) We got settled in and checked over by the nurse, and by 2:00am we were ready for bed. I quickly fell asleep, only to be reawakened at 2:30 by a very uncomfortable Zman. He had a “redman” reaction to the one drug. (It can happen when it is administered too quickly.) So, they gave him some Benadryl and bought us both a few hours of sleep. He only woke me 3 times for pee breaks, so all-in-all I got a good 4 hours of sleep that night. (You would think that at 9 years of age he could manage to balance on his knees, hold the urinal, and aim all by himself….but the risk of soaking the bed and having to change all of the sheets is far greater than the inconvenience of having to wake up and help him.)
Yesterday morning Zachary still had a fever of 101.0, so they started him Motrin. Usually they won’t use that because it will burn platelets, but the fever ALSO burns platelets, so waiting for the Tylenol to work so you don’t burn platelets, burns platelets anyways………confused yet? After that morning temp, he was under 100.5 the rest of the day. He still had a slightly elevated temp, but at least he was somewhat more comfortable. At some point yesterday, he decided that having a fever without the cough and cold symptoms just wasn’t going to be exciting enough, so he now has a wicked cough and is bringing up some really juicy junk throughout the day. He is sneezing too…..just to keep the whole “cold” effect going nicely. I do have to give him credit though. Other than waking me at 2:00am this morning for cough medicine, he has been very good about keeping himself occupied while I tried to regain some of my lost sleep. When I woke up this morning, he was quietly reading his Goosebumps book. He hasn’t complained at all about being in the hospital….at least not to me. I think he has realized that he is sick enough to warrant needing professional care. Who knows? Maybe they transplanted his brain while I was at the fair yesterday.
His chemo for this week is now officially off of schedule. I don’t know if it will resume a day late tomorrow, or whether it will get bumped further into the week. Thank you to everyone that posted a message in the guest book, Rebecca printed them so Zachary could read them all.
Scott
Saturday, January 24, 2004 9:17 PM CST
We are back in the hospital with a fever for the first time since August of 2002. We had a great day today with the Charlton’s. We watched Matthew and Christina play in their basketball league this morning. Then we had a very nice lunch. After that Zachary played with Matthew and was feeling fine. Around 3pm he started to get tired and took a nap with me on their couch. When he woke up a few hours later….he had a 102.2 fever and was not feeling well at all. We were lucky enough to get some Emla cream from Cameron’s family so Zachary wouldn’t have to get accessed without his numbing cream, and we were only 15 minutes from the hospital, so that was a quick trip. When we got to the E.R., his fever was up to 103. They took an x-ray, checked his blood and cultured his throat. I ran home to get clothes and necessities and thought I would give everyone a quick update. As I am typing this, he is getting moved up to the oncology floor. We have a room at Quantum House, so we can be reached there also. (561-494-0515…Gardenia Room)
As soon as I know more…..I will update from Quantum.
Scott
Thursday, January 22, 2004 10:14 AM CST
Busy, busy, busy.
Between the fishing business and the fair, there is no rest for the weary.
Zachary has been feeling well. He is still fretting over the whole ‘cursive writing’ thing. I’ve sat him down and explained that his teacher, parents, and most of the free world just aren’t putting too much emphasis on his ability to have perfect handwriting. That coupled with the fact that he only just started writing in cursive and that it will require lots of practice to get better should be enough to dissuade him from feeling so inadequate with this skill. (But of course it doesn’t!)
All of this bellyaching about kids with cancer and the hardships our families endure has really overshadowed a much more serious dilemma facing our family. I imagine this might come as somewhat of a shock to all of you, but, here it is:
I HAVE TO BE THE MOST MECHANICALLY INEPT HUMAN BEING ON THE PLANET.
There, I said it. I would love to point fingers and blame society as a whole for not giving me the skills that are required to make minor repairs around the house, but I doubt I’ll get much sympathy. So, I’ll just moan and groan about it like I usually do.
It all started with one of our toilets. The stupid thing wouldn’t stop running. (If there is some technical term to properly describe this behavior, it is obviously lost on me.) Anyways, it would not stop making noise. So, I took off the top from the tank section. (I was able to figure that much out.) Looking down into the abyss of hell, I saw a couple of rotting black thingy majigs, and a dial on another whatchamacallit. I played with the dial for a while to no avail. (This has to be the dumbest contraption I’ve ever seen….it has a marker indicating that if you turn it one way, it increases the flow, and if you turn it the other way, it decreases the flow. WHY THEN DOES IT INCREASE WHEN IT IS TURNED BOTH WAYS?????) Ok…whatever…it didn’t do it’s thing. I went to the hardware store and found a package containing an object that looked a lot like the whatchamacallit with the dial. I read the back and found that you can remove two screws and clean out a black disc thingy to make it work again. I returned home and proceeded to attempt this seemingly simple task. (Riiiiiiiight.) After draining the tank, removing the screws, and pulling out the black disc thingy, I quickly realized that never in a million years would that black disc thingy return to it’s home. (Even having made this determination, I of course was dumb enough to try.) I don’t know how much water came shooting out of the toilet after turning everything back on, but I do remember using some language that I’m not at all proud of. I drove back to the hardware store and purchased the kit to replace the dial thingy and another kit to replace all of the rotting seals and bolts. (If you’re going to screw something up…..screw the WHOLE thing up!) I successfully dismantled the tank and quickly realized that the parts that I had thrown away did not totally match up with the new parts sitting next to me. Not to be thrown off of my mission, I put everything in the way I felt it would work. (Not the smartest plan, but at this point I was desperate.) I tightened down all of the bolts, turned on the water and believe it or not, everything worked! The dial thingy did its thing and stopped when it was supposed to. The new bolts held tight and didn’t leak. Everything looked great! (Right up until the point where I realized that I now had a leak in the main line.)
HOW IS THE MAIN LINE LEAKING WHEN IT IS THE ONLY PART OF THIS WHOLE CONTRAPTION THAT I DIDN’T MESS WITH???????????
We are now a one-bathroom family. I have hermetically sealed off the master bathroom and labeled it a hazard zone. Rumor has it that our friend Lou will be back in town today. He should be able to rectify my handiwork. If for some reason he can’t, we’ll move.
Mynameisbooger
Monday, January 19, 2004 6:38 PM CST
Sorry for the lack of journal entries…..I’ve been working double duty....helping to keep things rolling with the fishing business and covering down at the fair with the key lime pie bars. So far we haven’t “lit any fires” at the fair. Everyone loves the product, but there is SO much food there, you can get lost in the shuffle. We’re on the opposite side of the fair from all of the rides, and that seems to be where the bulk of the crowds have been so far. Although, most of those folks are younger kids, and they’re not typically our largest customer base. Tomorrow through Friday are Senior Citizen days, so maybe we’ll get our demographic after all. We’ve had some great press. One of the local weather guys interviewed my one partner and ate a pie bar during the broadcast...talking about how great it tasted. And today one of the radio stations that is doing live feeds from the fair tried the bars and spoke highly of them too. We still have 13 days left, so we’ll see what happens.
Zachary joined me and one of my partners today to help out and run the booth. (He also was looking for another chance to go on rides and try to win stuffed animals.) He talked my partner Randy into riding the big drop with him. It is basically a tower that has four sets of seats that are slowly pulled up to the top and then dropped, only to slow and brake at the very bottom. By the look on Randy’s face afterwards, I’d say that Zachary faired better with that one than he did. Zachary and I threw some money away and won Rebecca a stuffed animal….just what she needed. (We only need 2 or 3 more stuffed animals to break the indoor record for a house of this size.)
Zachary started on another weird thing today. Out of the blue, he asks me, “Dad, is it expensive to change your name?” I told him you have to go to court and does cost something. So he said, “Ok…I want to change my name to Seth.” I asked him why, but never really got a straight answer. Evidently Rebecca told him that when she was picking names before he was born, ‘Seth’ made the final two but lost out to ‘Zachary.’ I told him it sounded more like he was subconsciously trying to rid himself of the person that has cancer to become someone new that is not affected by the disease. He didn’t know what ‘subconscious’ meant, so I had to explain it. He denied that that was the reason and offered this one up instead. “The name ‘Seth’ reminds me of the word ‘snake,’ and that reminds me of ‘Charlie’ (the snake we used to own,) and I miss Charlie.
Ok……how we got from A to B to Q……I don’t know….but this twisted logic was obviously coming from an overtired little man. When we were still at the fair, I told him that I would change his name to “Booger” if he wanted, but not to ‘Seth.’ He didn’t like that too much. Just to aggravate him further, I told him that I was going to change my name to “MYNAMEISBOOGER’, so when he wanted to get my attention, he would have to say, “MYNAMEISBOOGER”, and that would of course be very embarrassing. He didn’t like that idea much better. (I was only trying to help.)
Tomorrow it’s back to school and back to the fishing business for me. I’ve got two days off from the fair…and then it’s back to barking like the Yak woman. It’s better than being the guy that has to sprinkle pixie dust at the ‘tilt-a-whirl.’ (A National Lampoon Vacation reference for you movie lovers.)
Scott
P.S. Thank you to all of the CSC members and other friends that stopped by our trailer to try the key lime pie. We appreciate the business!
Monday, January 19, 2004 7:28 AM CST
***NEW UPDATE COMING TONIGHT***
We've been busy working the fair with the pie bars......haven't had time to update. Everyone is feeling great! Look for news from the weekend this evening.
Scott
Wednesday, January 14, 2004 7:39 PM CST
Thank you to everyone who offered their help with the Pentamadine problem. We are definitely going to flip a coin in 22 days to decide whether or not to roll a die to determine whether or not we’re going to read some tea leaves to see whether or not we should see a phrenologist to ascertain whether or not we should see a tarot card reader to figure out what we’re going to do about Pentamadine. Having settled that, I am happy to report that Zachary has once again made the honor roll at school. This comes as QUITE the surprise to our family. It was a mere 6 days ago that we were discussing the possibility of summer school or tutoring this summer because of Zachary’s frustration with cursive writing. When it comes to cursive writing, Zachary was of course handicapped from birth as ALL men are with sloppy handwriting. Girls somehow perfect this skill about 17 years on average before guys do. Then of course, he has me for a role model…..my handwriting could be used to send codes for our soldiers overseas…..the only drawback being that I would need to do ALL of the decoding…seeing as I’m the only one that can read my handwriting. (On a serious note, he missed all of last year because of his illness, and that is when they were introduced to cursive writing. On top of that, there have been several studies that show that the long term affects of radiation to the head will affect many of the finer motor skills….like handwriting.) I’m not making excuses for him. In fact, I told him not to worry about it. If they hold him back in fourth grade…who cares? He can do fourth grade for the next 20 years if it means he’s still with us!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
He was a little worried about the prospect of being held back and asked about Sylvan Learning Centers. I told him to keep practicing and it will come to him.
Ahhhhhhhhh to have somewhat normal problems to worry about…..how sweet it is!
I read back over a few of my journal entries and your guestbook entries and realized that I never commented on the suggestions of a night guard for my teeth grinding. The dentist had already suggested that the same day I posted about it on here. The $388.00 price tag dissuaded me from jumping on that bandwagon. I’ve since found an over the counter model that is about $70.00, so I may try that out.
Tomorrow we will be setting up our trailer at the South Florida Fair to get ready for the 17 day event that begins on Friday. Hopefully we’ll be selling a lot of chocolate covered key lime pie bars. (Try to keep your drool out of your keyboard.) If you are in the S. Florida area and plan on attending the fair, we’ll be there!
Scott
Sunday, January 11, 2004 8:18 PM CST
Well, I didn’t get quite the overwhelming response to my plea for help that I was hoping for. Oh well……such is life. On to plan B. I emailed one of Zachary’s original diagnosing doctors and asked for his opinion. If for some reason he is unable to shed light on our dilemma, then I will have to resort to the most scientific and logical course for making these kind of tough decisions. (Eenie, meenie, miney, moe…catch a tiger…..etc.)
Zachary had a good weekend. He had a few bouts of extreme nausea where he had to take a few minutes to compose himself. Car rides are definitely torture for this boy. I don’t think there is enough Zofran on the planet to make him comfortable while riding in a car…especially in the days immediately following chemotherapy. One of the more disgusting “side-effects” that he has developed is a need to spit, to clear the phlegm out of his mouth. I guess the alternative to this would be swallowing it, and thus making himself more nauseous. So, we’ll be walking along, and he’ll have to spit. (Nice right?)
(Right about now you’re probably wondering where all of this wonderful dinner talk is leading us…..well, as always, I’ve got story to tell.)
First though….a riddle. Everyone loves my riddles right? (To protect the innocent, I have changed the name of the person in this story so no real embarrassment will fall upon them. I have used a very clever highly classified cryptography method to disguise the name so you have no real chance of knowing who I am speaking about.)
LETS SAY A NINE YEAR OLD BOY FROM JENSEN BEACH WHOSE NAME IS FACHARY ZINESTONE IS WALKING WEST THROUGH A PARKING LOT AT 2 MILES PER HOUR. THE WIND IS BLOWING EAST AT 15 MILES PER HOUR. IF THE ABOVE MENTIONED BOY SPITS INTO THE WIND, WHAT WILL BE THE OUTCOME?
A). THE SPIT WILL FALL HARMLESSLY ONTO THE GROUND AS IT WAS INTENDED TO.
B). THE SPIT WILL FALL STRAIGHT DOWN, BUT THE FORCE FROM THE WIND AND THE SPITTING MOTION WILL THROW THE BOY BACKWARDS.
C). THE SPIT WILL LEAVE THE BOYS MOUTH AND ARC NICELY DOWNWARD TO LAND ALL OVER HIS NICE CHURCH SHIRT, ONLY THEN TO BE WIPED IN A SPREADING PATTERN TO FULLY COVER THE MAJORITY OF HIS FRONT.
Well, if you chose C, then you are obviously correct. The lesson here folks is….you can teach your child to go potty, dress themselves, pick up their toys, write their name, remember their phone number, mind their manners..etc….but evidently, you can’t teach them NOT TO SPIT INTO THE WIND!
The upside once again here is that immediately following this act of brilliance, I realized that I would have more fodder for this journal entry.
Scott
P.S. Some of you have inquired as to the whereabouts of the music and link to the Cancers Sucks Club. Well, I did not renew my subscription to the web hosting service or domain name that we had. I just couldn’t see spending the money any more just to keep everyone crying every time they heard that song. The Cancer Sucks Club is not a domain name that can be owned or bought. Sadly it is lifestyle that has chosen many of us…without our permission I might add. The club was here before me, if not in name then in spirit. I am sure it will be here long after I’m gone. All of us in this boat know the bond that has been created by living with these mutual experiences. I WISH the club could be eliminated by just canceling a subscription…unfortunately it’s not that easy. So don’t put too much thought into the fact that there isn’t any music here anymore. There were also some faithful followers of our saga that were having trouble reading the page because the music wouldn’t load properly on their system.
Friday, January 9, 2004 5:20 PM CST
Against the advice of my publicist I have decided to temporarily alienate a large chunk of my reading audience for this one journal entry. We are in need of advice/information regarding this medicine that Zachary started on earlier this week. I know, I know….many of you are shaking your heads in disbelief asking yourselves, “There is something that Scott doesn’t have the answer to?” The answer to that is, “Every leap year I find myself puzzled by one mystery.”
So, for those of you that do not now, or never have had a child with cancer, I am sorry for focusing on this one subject, but I am in need of answers.
The drug in question is IV Pentamadine. Many of you will of course be familiar with the version of this drug that is administered via inhalation therapy. The choking and gagging and screaming and vomiting that almost always follow that treatment are ingrained in many of our minds as precious moments that we’ll all cherish when thinking back on our child’s treatments. Well, that drug is also now being used in an IV formula that is given over two hours once per month. Zachary got pretty sick after taking it on Monday, and he has been VERY lethargic and dizzy and out of sorts ever since. His blood counts came back fine, so we’ve ruled out some sort of anomaly from that end.
Basically I am looking for anyone that has firsthand knowledge of this drug. Zachary did take it on day #1 of chemo, and that may have had a factor in the game. Are dizziness, headaches and nausea par for the course with this drug? (I am not looking for anyone to open their PDR and read me the textbook version….I’ve done that already…..I am looking for actual usage stories that we can relate to.)
Thank you in advance for stepping up to the plate and helping us out.
Scott
Wednesday, January 7, 2004 8:28 PM CST
Unlike many of our dear friends, Zachary’s hospital stay only lasted one night. If you speak with his royal highness Zman, you will leave the conversation picturing a tortuous year-long stint in a maximum security prison. When he awoke Tuesday morning and saw the sun shining through the blinds, he freaked out on Rebecca and accused her of the capitol offense of “Not waking me up so I could get out of here before the sun came up.” I haven’t looked this one up in the law books, but I’m thinking that we’ll be needing a top notch defense lawyer to help Rebecca avoid Zachary’s version of the electric chair.
Another interesting story to come out of day 1 of chemo was the whole “getting accessed” scenario. Having endured this procedure for almost four years, Zachary pretty much has this down to a science……or so I thought. It seems that Zachary’s doctor chose Monday to get some practice at accessing kids again. The nurse was there, but the doctor was having a flashback to his youth and all of those “pin the tail on the donkey” games, so he chose Zachary for target practice. Now, this development alone would have caused mild alarms to start ringing in my head, but the plot thickens. The doctors office was out of ¾” needles. They only had the larger size…….the larger size that is much bigger than the smaller size…..the larger size that Zachary has never had in his chest before………(and just when you that was enough drama….the plot thickens further.) Apparently Zachary had some sort of divine spark of brilliance that led him to the conclusion that getting a 1” or 2” needle jammed to the hilt into his chest would be MUCH more enjoyable if he didn’t use any numbing cream. Hmmmmmmm. Sounds like a good idea to me! I mean, why numb the area on your chest the way you ALWAYS numbed it when you can experience the pain the way it’s meant to be experienced….like a man! (There may be some sarcasm mixed into this journal entry…it’s your job to determine where that sarcasm is and how to properly apply it so the text reads well.)
Anyone want to guess how loudly he screamed when he got stuck? No takers? Wimps.
So, Monday was not a stellar day in the annals of Zachary’s medical history. But like all of the other days that are firmly embedded into our brains…..we all survived it!
Scott
Monday, January 5, 2004 10:37 PM CST
(NEW PHOTOS ARE STILL IN THE ALBUM)
****IF YOU ARE WONDERING WHERE THE MUSIC OR LINK TO THE CANCER SUCKS CLUB WENT....THEY ARE GONE. I DID NOT RENEW MY SUBSCRIPTION TO THE WEB PAGE.****
Here it is 11:20pm on Monday night, and I should be in bed with my wife laying next to me and my son safely tucked into his bed about 34 feet away. Unfortunately, I will be sleeping alone, and my wife and son are sleeping about 41 miles away from me in St. Mary’s hospital.
To the best of my recollection, it has been about 18 months since he has had to stay over night in the hospital. (If your windows were open this evening, that screaming and crying you heard was him pitching a major fit.) Zachary started his normal chemo today. All went well with that, until he started to negotiate with his doctor about the antibiotic that he takes three times each week. After he complained for awhile, the doctor informed him that there was an alternative that required a two hour IV infusion in the hospital. It would only have to be given once per month, and that would remove the need for the constant oral medicine regimen. Zachary jumped on the new plan, so the doctor ordered it to begin today. SO, after chemo, Rebecca and Zachary went over to the hospital and got set for a three hour tour. (It helps if you’re humming the Gilligan’s Island theme during this next part.) Anyways, one thing led to another and after finishing up the infusion, Zachary tried to break the indoor record for largest amount of vomit every projected over one floor. (Chunk for chunk, I’m told he won hands down, but the judges are still reviewing the tapes from our NYC trip when I had food poisoning.)
Well, the doctor got wind of Zachary’s inability to hold down liquids and the nurse weighed in with comments about how pale he looked………yada, yada, yada…….they’re staying in the hospital tonight. (This is where all of the screaming came in.)
I spent about 30 minutes on the phone listening to Zachary explain how he couldn’t sleep in one of those beds…his neck would hurt….they would wake him up…….he would roam the hospital all night because of boredom……..and the list goes on.
One of the real joys of being a dad is getting to be the bad guy. (NOT). I finally had to be firm and explain to him that none of us wanted this to happen. I told him that it is ok to be angry and upset, but that he can’t take out his anger on us! Things deteriorated after that, he started sobbing and couldn’t talk with me anymore. (Guilt is horrible emotion. They need to come up with an instant pill that removes that emotion so parents can get things accomplished without being hindered by it.)
To make matters worse, they are stuck in the last room available, and it of course has no bed for Rebecca. She will be sleeping on one of those fold out chairs that could permanently disfigure a Hobbit. I’m sure that once Zachary falls asleep he will rest peacefully all night, but the anxiety level right now is elevated. (Orange…yellow….one of those dangerous colors.)
So, we find ourselves thrust temporarily back into the world that we knew so well for so long. Maybe we were getting too comfortable in our ‘partial remission.’ Nothing like a bucket of ice water thrown in your face to bring you back down to Earth.
Scott
Sunday, January 4, 2004 6:25 PM CST
We are fully recovered from our “puke-like-substance” on the car ordeal. I would have updated sooner, but we went away for a day and half to Tampa.
This next story needs to be prefaced with a comment about our good friends the Mathis’s. We have had many adventures with this family and hopefully we’ll be able to have many more in the near future. This past weekend we were all invited to go see a hockey game in Tampa. Unfortunately, Mitchell got sick early in the week with a mystery rash that had the doctors scratching their heads. After a few days of treatment, he was doing much better, but Friday morning he woke up with pink-eye, so there would be no traveling for him until he recovered. The Mathis’s were very kind to allow us to invite some friends to use the tickets for the game. Zachary was able to invite two of his friends and their families to join us. One of the two hockey players that Zachary met last Christmas owns a private box and was kind enough to allow the use of it for the game on Friday. (A special thank you goes out to Brad Richards.) The wife of the other hockey player that Zachary met last year was very instrumental in getting us access to the box and also to the players after the game. (Another special thank you goes out to Martin and Heather St. Louis.) We have been very blessed to have met so many kind people during this adventure of ours.
While we would have thoroughly enjoyed a Lightning victory, they lost to the visiting Blue Jackets. I’m no expert on hockey, but in my opinion they played a good game…despite the loss. They had about double the shots on goal, and that is always a good sign that you are doing something right. A fluke goal by the other team after the Lightning goalie mishandled a puck that came flying at him put the Lightning in a position of catch-up. After that, they were forced to pull the goalie and use an extra attacker. That ended up resulting in an empty net goal. Even with the loss, we all had a wonderful time. Martin and Brad are amazing players….their skating and passing abilities are only surpassed by the obvious passion that they exhibit while on the ice. Last night they played at home again and beat Philly 6 -1.
After the game on Friday, we were allowed access to the players as they were leaving their private area. Most of the team stopped by and signed the jerseys that Zachary, Lars and Connor had gotten earlier in the evening. (Another special thank you to Shelly and Barbara for buying Zachary a jersey.) The boys would only let Brad and Martin sign the front; they had all of the other players sign the back. Martin recently sent Zachary five of his trading cards, all autographed. So, we bought a shadow box and I cut out some poster board and with Rebecca’s help, we have a really nice framed jersey, with two great signatures on the front, and five signed cards down below. (There is a photo of it with Zachary in the album.)
Last but not least, I want to thank Erin for joining us at the game. She has been a huge part of our Tampa experiences. Erin was kind enough to take Lars’ younger sister Sarah down to meet the Lightning cheerleaders. (Eric and I volunteered to escort them, but somehow our offers got misinterpreted as a cheap attempt to check out the skimpily dressed ladies.) Erin also showed Zachary and me an interesting photo on the wall at one of the entrances. Apparently, the arena has photos all around of players doing different things in the community. The one Erin showed us was from last Christmas. It was of Brad and Zachary at the dinner checking out the toys. I took a photo of Zachary in front of this massive picture and it also is posted in the album.
After the game we went to dinner near the hotel where we were smart enough to have made reservations. (Friday nights can be bad.) We walked into the restaurant and who did we run into? Martin and Heather. Zachary of course wanted to go join them for dinner. I had to bring him back down to Earth and try to explain to him that these people want to enjoy a quiet dinner without being mauled by fans. The only analogy I could give him was from when we had done some special events and fundraisers. Everyone would come up and want to hug and talk with him. Zachary would of course bury his face in one of our sides and try to hide. Interestingly enough, as I was explaining to Zachary that Martin is very well known and probably gets stopped often, he walked by in an attempt to use the restroom and was stopped by a boy wanting an autograph. He of course obliged. I ended up letting Zachary say goodnight to them, but only after making him promise that he wouldn’t make a career out of saying goodnight.
After a weekend like that, it is easy to envision angels looking out for our Zachary. To have such kindness thrust upon our family is truly mind boggling.
Yesterday we went to the Tampa Aquarium and checked out all of the fish for a few hours. After that, it was one stop in Plant City for fresh strawberries, and then home. (I can hear the belly aching now…..”Key Lime Pie Bars”…..”Fresh strawberries”……”you torture us with food constantly.” GET OVER IT!
Zachary and I just got home from the new Lord of the Rings movie. We loved it. I won’t ruin it for any of you that haven’t seen it yet, but I will say that it is well worth the 3.5 hours of your time.
Scott
Sunday, December 28, 2003 10:29 PM CST
*****NEW PHOTO*****NEW PHOTO*****NEW PHOTO*****
You get home from vacation, unpack, read the mail, get settled in, and expect to gear back up for whatever kind of life at home you're used to living. Right? There shouldn't be any major glitches with that line of thinking...should there? (In any other household, those words would hold true.)
This morning, after watching some TV and being lazy before church, there was a knocking on the door. Hmmmmm...who could it be? Our neighbor was checking in to see if we had gotten a look at our one car that was out front over night. (I had left it parked in our grass parallel to the road.) Curiosity got the better of us, so we ventured outside to see what all of the hubbub was about. Evidently, at sometime during the night, some vandals had taken it upon themselves to put very large volumes of a vomitous (I made that word up,) substance all over my car. Now, when I say this substance was of a similar consistency, texture, and odor of vomit, I am of course speaking from experience. (For those of you that doubt my vomit credentials, please refer back to the journal entries following our trip to NYC in January of this year....---two words---- FOOD POISONING!) Anyways, I've had enough exposure to vomit to make this analogy. A closer examination revealed that the bulk of this substance was chunks of ham, pork, hot peppers, and obscenely large amounts of a fluid that housed the aforementioned food particles. All of this was very artistically strewn about my hood, doors, trunk, rear end, and wheels. (I actually took some digital photos that should easily trigger your gag reflex when viewed...so tread carefully when going to the photo album to see the parasailing photo.)
Now, many of you are asking yourselves the following question: "Who would want to harass this family? Who could possibly be upset with them?"
Well my friends, the list is long and varied. I don't want to bore you with a detailed list of everyone I've ever wronged, but suffice it to say that there are many lost souls that have crossed over to the dark side. I'm sure that there are some power plant higher ups that aren't too happy about all of the money our lawsuit is costing them. Then there¡¦s the insurance folks, I've been somewhat of a thorn in their side...especially when you factor in my ideas for spending many millions of dollars of their money to keep families like ours on private insurance. It doesn't take much of an imagination to extract out those two categories further to find all sorts of other folks that might not be too happy with us.
Its all fun and games until someone gets buckets of a puke-like rotten liquid all over their vehicle. Honestly folks, I don't think anyone would target us for this kind of punishment and then be stupid enough to leave the bucket in our neighbor's yard. I mean, doesn't EVERYONE watch CSI. If any real damage had been done, we could get fingerprints from that bucket! Luckily for us, our neighbor was kind enough to use his high pressure sprayer to remove most of the mess from my car. A trip to the local self-service washing place removed the rest. There were some stubborn deposits under the hood tucked up under the corners. Hopefully we'll wake up tomorrow to clean cars and no more surprises.
Scott
Friday, December 26, 2003 4:05 PM CST
We have returned to the home front!
All of us are feeling well, and there were no major incidents to report from our vacation.
Having said that, I will convey a few short anecdotes from our trip:
One would think that when traveling to the Florida Keys, one would experience weather conducive to swimming and/or enjoying the outdoors. One would NOT expect to be freezing one’s ass off! (All of this is of course relative. We were freezing with sub 60 degree temperatures, while some of you were FREEZING with sub -40 degree temperatures.) If we were in Alaska or Iceland, I would not be mentioning this, but seeing as we were in the Keys, I think it is relevant to talk about how unseasonably cold it was. When a resort cancels its snorkeling trips, you KNOW its cold! So, we endured the cries of two days from the children begging us to let them swim, and finally on the third day, it was warm enough. The pool was heated, so that was an easy concession. The lagoon was cold. I’m not entirely sure, but I swear there were ice cubes floating around every now and then. On Tuesday, Zachary and I did a tandem parasailing adventure. Basically, we are strapped individually into harnesses that are then attached to the sail, with Zachary in front of me. For those of you that have not tried this, it is quite amazing how they do it. You stand on the back of the boat; all strapped in with the sail fully open behind you. The drivers then start to let out the line and you begin your climb. It would have been better without all of the screaming and whining like a little girl, but I promised Zachary that next time I would try to be braver. Because of the chance of getting wet, Zachary could not wear his hearing aides. I was concerned that with all of the wind, we would get up there and not be able to talk. I was VERY pleasantly surprised when we reached the top. (500’ is the maximum allowed in the USA now. Evidently there was a problem in the Northeast with banner planes knocking parasailers out of the sky.) Not only was it very quiet, but the cold wind that we had experienced on the boat was gone, and we were very much at peace with the feel of it. I will treasure those 15 minutes that we soared above the ocean, trying to spot different things on the ground and in the water. It was one of the most serene experiences I’ve ever had. Zachary absolutely loved it, and not once did he flinch. He even coaxed the boat drivers to dip us into the water before reeling us in the entire way. I felt like a popsicle after shooting back up out of the cold water, but Zachary enjoyed it so much, I couldn’t bring myself around to giving him a hard time about that. As soon as we were back in the boat, he wanted to go again. Unfortunately, it is quite expensive, so we will wait for another opportunity to arise where we can repeat that amazing flight.
The day after that was our dockside encounter with the dolphins. They have an in-water encounter, but we opted for a family dockside encounter where we got to interact with the dolphins, pet them, feed them, and observe them up close. It only lasted about 15 minutes, but it was fun for everyone. We have a few photos from that, and we will try to get them scanned into the computer so I can post them on here. (My dad took photos of the parasailing that I should have within a day or so.)
The resort had a great playground where the kids could climb on trees, play basketball, volleyball, miniature golf, swim, play video games, kayak, etc.
We had a very relaxing week, reading by the pool, swimming, and visiting with family.
Scott
Friday, December 19, 2003 9:18 PM CST
We are all packed and ready for our trip to the Florida Keys. Unfortunately, the weather is not cooperating and we will probably not have any days over 75 degrees. (For those of you in sub-zero weather, IÂ’m sure the violins are playing furiously.) We were hoping that Zachary and his cousins would get to swim and snorkelÂ…Â…time will tell. I may be able to update from down there, if so, you will get news of our travels.
REALITY CHECK!!!!!!!
For those of you that come to visit and are lucky enough to be able to jump in and out of this maddening cancer world of ours, we have had another loss in our community. Please visit the web page shown below and offer prayers and condolences to this family. We met Jake and Chandra in NYC when we were trying to get on the study up there. They have endured a battle that has claimed their child, and now they have to try and figure out how to mourn and remember and live.
www.caringbridge.org/nc/hopefor
IÂ’m sure that there are folks out there that have pearls of wisdom to invoke at a time like this, but I do not. I want this madness to stop. I want these children back. I know these are selfish wishes that I canÂ’t have granted, but I have them nonetheless.
Scott
Tuesday, December 16, 2003 8:42 PM CST
HOLY COW! I go for weeks where I only update once in awhile, and now you guys can’t keep my away from the keyboard. “Step away from the computer. No one needs to get hurt.”
Well, if you are just checking in for the first time in several weeks, you need to go back and read the past two entries. Now, for those of you that have faithfully followed my ramblings, here is some more interesting news.
I emailed one of the two doctors that I’ve been writing about and asked some VERY specific questions about Zachary and his current status. All of you know how much it has upset us that not only don’t we get any acknowledgement for Protocel, but the credit is being given to a chemo that we were PROMISED could not deliver these kind of results. So, here are a few excerpts from the email I received. This doctor was kind enough to include my questions so I would know what he was answering. (But, since I’ve met many of you and know how confusing the English language can be, I will make it even easier to understand.)
Scott: “Have you had ANY children like Zachary that have experienced this kind of improvement after so many months without change?”
Doctor: “Not in my experience with neuroblastoma.” [WOW]
Scott: [In reference to the current chemo having used up it’s usefulness.] “Do you mean he will probably not improve any more, or that this chemo will more than likely not contain the disease for much longer?”
Doctor: “I do not expect him to improve further. I suspect that he may stay in his current state for some time with continued irinotecan, but not forever. You have achieved a “miraculous” event of a second partial remission after progression, after bone marrow transplant.” [WOW AGAIN]
So, not only has he never seen this kind of response before, he is conceding that it is “miraculous.”
Well folks the votes are in and they have been carefully tabulated. (We’re in Florida; we take our vote counting very seriously.) All of the hanging chads have been accounted for, and here is how the voting broke down:
1). Should we keep using the Protocel?
Yes = 9,337,126 No = 2
(Both ‘no’ votes were from chemotherapy drug salesmen.)
2). Should we fly to NYC to retest?
Yes = 1 No = 9,337,125
(I threatened the one salesman, he switched sides.)
3). Should we totally annihilate Zachary’s immune system during the worst flu season in 40 years, and then put him on an airplane (better known as a flying flu box) and travel to NYC the Mecca of international flu convergence, to spend three weeks living in a hospitality house that has 11 floors and 88 rooms chock full of disease carrying folks from every corner of the world, followed by immense pain and torture that at best, MIGHT help?
Yes = 1 No = 9,337,125
(The one doctor felt obligated to vote for his own facility.)
Even if the stars were lined up and there was no flu and money was no object, we just don’t see it happening. We have gotten a miracle that other neuroblastoma children have missed. No one can take that away from us. For however long it lasts, this quality of life will always be special to us.
Now, on a lighter note, I had my permanent crown put in about a week ago. Yesterday was my 6 months cleaning, and the dentist found one of my fillings to be chipped and cracked. So today, I went BACK to the dentist to have it repaired. Interestingly enough, he has deduced that cracking two teeth in a short amount of time cannot be written off as just bad luck. Apparently he is convinced that I am clenching and grinding my teeth during the night, exerting about 10 times more pressure than is normally put on my teeth during the day. This is all caused by stress. Hmmmmmmm. Stress? Who’d of thought? Well, that’s a stumper? Now I’ve got to do some soul-searching to try and sleuth my way to the bottom of this riddle. How in the world do I figure this one out. I mean honestly folks; I love a good riddle, but stress? Where do I begin? Could it be the value of the dollar against the Japanese Yen? Or maybe it’s that nagging dilemma that we have when ordering pizza…..Rebecca likes sausage, Zachary likes pepperoni, and I love mushrooms…….OR, maybe it has something to do with the whole global warming issue. I’m going to get to the bottom of this if it’s the last thing that I do. How hard can it be? Fuel prices have been sort of high lately; maybe I’m subconsciously fretting over that. Then there is the ever persistent worrying about how many more seasons of the Simpsons we’ll get to enjoy. Wow, this is truly difficult. I’ve got to somehow figure out what in the world is causing my stress, and THEN, I’ve got fix it. As much as I like to be a lone soldier fighting the good fight, I may have to elicit the assistant of you the readers to help me figure this one out.
Scott
Monday, December 15, 2003 8:13 PM CST
Ok….I heard back from the other doctor whose opinion we were waiting on. He started off with a very nice, “First, your news is absolutely the best news that I have had recently.” Unfortunately that is followed by a “However.” The bottom line is that he agrees with the NYC doctor about our partial remission. He also feels that the NYC therapy is where we belong. Hmmmmmmm. (Scratching my head and putting on a face similar to that of a puppy that hears a sound it doesn’t understand.) I guess this advice bothers me on a bunch of different levels. I am of course disappointed that once again they are not recognizing Protocel in any way, shape or form. Also, I am confused as to why I can’t get a legitimate answer regarding the current chemo that we are using. The doctor that responded today feels that, “he likely has reached the maximum benefit of irinotecan, and it is time to start considering alternative medications.” He may be right. There really is no way to know when this chemo has stopped to benefit our son. It may be doing nothing….the Protocel could be doing all of the work. Or, it may be assisting the Protocel by “holding down” the cancer cells while the Protocel kicks the $%&@ out of it. So, without knowing for sure, we are back to square 1,952. His disease level is low; everyone is in agreement on that. New conventional therapies ALL are showing their best results in children that have minimal disease going into the study. So, jump on in now….or forever hold your peace. (That is pretty much the message that we are receiving from these doctors.) “If you wait…..it may end up being too late once the disease comes back.”
BUT……what if the disease isn’t coming back any time soon? What if the Protocel is doing exactly what we all believe it was designed to do? The therapy in NYC would require giving Zachary two rounds of very, very nasty chemotherapies. His counts would drop to zero…..he would be very vulnerable to infection…(right smack in the middle of the worst flu season in the past 40 years) and then, if we somehow survive that nonsense….we have to travel to NYC for two weeks out of every six to torture our child with immense amounts of pain….for up to one year, all with no promises or amazing statistics to motivate us by.
Zachary started another round of chemotherapy today. We are not ready to kick the conventional chemo to the curb just yet. There is another “conventional” therapy that is available to Zachary. It is a medication that is still in trials, that is showing benefit in children with minimal residual disease. It can be taken at home, with little or no side-effects. It cannot be given while taking chemotherapy….so we would have to switch over to it. If it fails, (and if the Protocel fails too) switching back to this chemo would not be an option….the cancer will have had too much of a chance to become “immune” to its effects.
All of this is of course moot, if you believe the Protocel is our savior. I pretty much am just relaying to all of you what is being thrown at us. There is some other technical information that effects whether or not we would try this other medicine that I am working on. One of our doctors feels there is a chance Zachary may somewhat resistant to this family of medicines, but I am fairly certain that he is basing that opinion on incomplete information. I will be emailing him to “enlighten” him with my opinion so he can make a more informed judgment as to whether or not it may be a good option for us when we discontinue chemo. That option would allow us to maintain our Protocel regimen and improve Zachary’s quality of life by replacing the chemotherapy with this new drug that is much less harsh on the system.
Is your head spinning yet? NO? Lucky you!
Once again, please don’t misinterpret my ramblings as a switch from being elated over our recent news to a stance that appears to be sad with our situation. Our news is great. Our news is uplifting. Our news deserves to be celebrated. The doctors that we’ve consulted with are some of the most knowledgeable doctors when it comes to this type of cancer. That doesn’t mean they have all of the answers. They give opinions based on their experiences with this monster. They have no experience with Protocel. They cannot factor it into their mindset.
Scott
Saturday, December 13, 2003 4:19 PM CST
Today’s journal entry is nothing more than an amendment to yesterday’s full dual Doppler coverage of Zachary’s testing results. So, in the interest of keeping me from having to recap everything that I wrote yesterday, please go and read THAT entry if you have not done so already. Once you have completed that seemingly simple task, you may proceed with the following information.
(No cheaters now….did you read yesterday’s entry?)
As I mentioned in that entry, I emailed two doctors whose opinions I value. Having said that, we must keep in mind that both of these fine gentlemen are HUGE naysayers when it comes to Protocel. I’m pretty sure they spit on the ground every time they have to say that word. In my email to these doctors, I specifically mention the fact that other than the “maintenance” type chemo that we’ve been doing, the only other thing we’ve been giving Zachary is the Protocel.
The doctor from NYC responded this morning. He was nice enough to congratulate us with our news; “We are all, of course, extremely pleased with the response to irinotecan and the excellent quality of life.” (I spoke in my email of how good Zachary feels and how well he is doing at school.) (Notice how the chemo gets 100% of the credit. Hmmmm. I’m sure this is a Freudian slip. He must have fully intended on giving some of the credit to Protocel and just have experienced a brain fart while typing the email.) He goes on to write: “However, let me correct you. The right bone marrow biopsy shows ‘residual maturing’ cells. This is a term describing the appearance of the cells. They are still malignant/cancerous. Zachary is NOT in a complete remission; rather he is in what we call a ‘partial remission.’” He went on to say that he recommends that we travel to NYC after the holidays for testing there, followed by THEIR treatment program. You may recall that this is the same program that Zachary was NOT eligible for in September of 2002 or January of 2003 because of the level of his disease. Hmmmmmm (again).
Let’s recap.
The disease was too high during all of our trips to NYC.
The chemo we were given, irinotecan, was used to try and improve those levels.
The disease responded only slightly, mildly improving, then stabilizing.
The doctors told us that the chemo could be used to keep that current level, but that it would NOT improve after the first few rounds.
The disease is NOW low enough for their studies.
We haven’t added any newfangled chemo….we’ve only added Protocel.
The chemo gets FULL credit for our improvement.
(How did we get from A to B to Q?....aren’t we missing some letters in there?)
If I sound sarcastic and bitter, it is only because I AM sarcastic and bitter! I truly appreciate this doctor taking the time to read the email I sent detailing Zachary’s current test results. I also appreciate him taking the time to respond. I even appreciate him offering entrance into his heralded study. I’m a little disappointed that he in no way acknowledges the use of Protocel. He could have at least said something like, “I have no experience with this supplement and therefore cannot offer any opinion as to how it may have affected Zachary’s level of disease.” But nooooooooooooooooooooo…….
His correction of my interpretation of the results really changes nothing. We had planned to continue the chemo for now anyways. ANY presence of cells is worrisome; however, we deserve the opportunity to celebrate our victory. Clean MIBG scans are something we NEVER believed we would see. Bone marrow clean 6 months ago and almost completely clean now is something else we never believed could be possible. So enjoy this time with us, pat yourselves on the back for a prayer job well done, and help us to enjoy this newfound quality of life with our son.
Scott
P.S. When I hear from the other doctor, I will relay that news as well.
Friday, December 12, 2003 8:10 PM CST
In case you all have been wondering…..I HATE TO WAIT FOR RESULTS!!!!!!!!!!
I will not torture you the way the doctor’s office tortured me today.
The MIBG scan shows “No measurable disease.”
The bone marrow (left side) shows “No evidence for involvement of neuroblastoma.”
The bone marrow (right side) shows “Less than 2mm of maturing neuroblastoma with ganglionic….”
What does this all mean?
The bottom line here is: NO ACTIVE CANCER IS FOUND!
The “maturing neuroblastoma” are aged cells that are hopefully dying. Basically, you hope that any treatment you are doing is aging the cells so they die off. Sometimes patients will show signs of mature cells for many months. They can sit there and do nothing for a long, long time.
Now, before we get toooooooooo far ahead of ourselves, it is important to keep in mind that “no measurable disease” does not guarantee that there are no viable cells hiding out somewhere. However, it DOES mean that he has had dramatic improvement over the past 9 months. 9 months? Hmmmmmmm. I’m sure there is some significance to that time frame…..give me a minute….I’ll figure it out…….maybe it’s got something to do with the moon cycles….no….that isn’t it……wait now…don’t rush me……….lets see….well……we started Protocel about 9 months ago….but that COULDN’T be it…….that stuff is just nonsense according to the doctors…..so it’s GOTTA be something else……well….I’m sure it will come to me sooner or later. (Reread previous sentence with heavy sarcasm for desired effect.)
So here we are….in very, very, very uncharted waters. Rebecca and I have spent so much time planning for doom and gloom that we are finding ourselves confused as to how to feel. We want to jump for joy, (but joy’s boyfriend said “hands off mister”,) and we want to dance in the street, (but I’ve got 3 left feet,) we want to scream at the top of our lungs, (but Rebecca woke up today with no voice,) so, I guess we’ll just go to bed and sleep a little easier for a change. None of us is promised any future for ourselves or our loved ones. (If you've driven on our highways lately, you know as well as I do that life is precious and not to be taken for granted.) So, we are confident that if nothing else, we have bought some precious quality time. They can’t take that away from us.
I’ve emailed two very respected doctors that have treated Zachary and are experts in this field……it will be very interesting to see what they say.
Scott
Thursday, December 11, 2003 7:58 PM CST
We are home, anxiously awaiting news from the bone marrow aspiration and bone biopsy. I was told today that I can get final word tomorrow around lunch time. Without going into a long and drawn out medical recap of what all of the testing means or doesn’t mean, I will say this for now.
The scan results were good. My level of excitement will increase when I hear good news about the marrow. (That IS the definitive test.) MIBG scans can be finicky. Alone they are not used to hang your hat on. When done in conjunction with marrow testing, they are much more telling.
So, please be patient as we are trying to be, and pray that we will get more good news tomorrow. Once I have the entire picture to look at, I WILL update a full review including long boring drawn out explanations for those of you that need remedial cancer lessons. I promise to even include lots of big words with fancy spellings to sound important.
Yesterday was a long day for us. Zachary had his scan in the morning, and that went fine. While he started that, I strolled down to admitting to make sure the rest of the day was going to run smoothly too. Unfortunately, the admitting department is always a couple of french fries short of a happy meal, so I had to speak slowly and use really small words. When I first approached the desk, they politely asked what I needed, and when I told them, they very quickly found Zachary’s name on their list. That was the good news. The bad news is they only had him marked down for one procedure, the scan. The bone marrow testing was nowhere to be found. I relayed my concern to the two ladies at the desk, and they tried to assure me that once Zachary was registered for the scan, he was set for everything else. (Wrong answer) I persisted with my pessimism and was able to get them to check with the boss. They found the correct paper work and processed me quickly. I was so proud when I strolled back into nuclear medicine where the scan was taking place. I had accomplished a great deed. (NOT) Rebecca looked at the forms; they had changed Zachary’s diagnosis from neuroblastoma to rhabdomyosarcoma. For those of you in the cheap seats, that is an equally “fun” cancer for children. (Horrible survival rates, terrible protocols….you know…all the good stuff.) Normally I would have stormed back to admitting to have them correct it, but I’ve heard rumors that for every disease you get diagnosed with, you get a special card stamped. And after 5 major illnesses, you get a free colonoscopy for you or one of your family members. (The perks just never end!) Seriously though, they weren’t treating Zachary for anything, so I wasn’t too concerned about them giving him the wrong medicines or anything like that. Besides, if there weren’t any screw ups, what would I write about? The fun part of yesterday was the anesthesiologist and our oncologist trying to get their schedules to match up. Zachary was set for a 1pm procedure; it didn’t happen until 3:30. I would have complained more about this mishap, but our friends were there also, to have their daughter’s port removed and a bone marrow done. They got through the port removal, only to find out that the oncologist couldn’t get there while their daughter was under anesthesia, so, they had to wake her up, and then wait three hours to get another anesthesia and THEN get the bone marrow down. All of this is of course while NOT letting our children eat anything.
You would think that at a hospital that treats lots of children would be smart enough to schedule them in the morning, so they wouldn’t be as adversely affected by going all day without food. Adults are more adept to handling that. (Lord knows most of us could use the reduction in calories.) Oh well, I guess it will give me something else to try and fix.
Tomorrow I will update. Tomorrow I will explain everything. Tomorrow, tomorrow…(it helps if you imagine me singing that with a voice like the girl that played Anne.) “The sun will come out, tomorrow, bet your bottom dollar…..”
Scott
P.S. The head of nuclear medicine was talking with Rebecca and mentioned that once the children’s hospital is completed, they will be doing even more scans using the isotope that is used on Zachary. They are now one of only a few hospitals down here that use that isotope. (You may or may not remember that we found that isotope through a connection my father made. Because of our efforts and persistence, they started to use it more regularly.) Now local families won’t have to travel very far to get this test. It feels good giving something back.
Sunday, December 7, 2003 6:25 PM CST
***** NEW PHOTOS ***** ***** NEW PHOTOS *****
Except for the cold weather, we had a very nice weekend. (I know some of you Northerners are laughing right now….”cold weather” is relative.) If it gets below 70 degrees down here…we start to panic and think about moving further south. Anyways, we had two nice outings this weekend. Yesterday we got to attend the Chris Everett Celebrity/Pro Tennis Classic in Delray Beach. There were four matches that featured a variety of famous folks….some of the ones that we knew were Chris, Chevy Chase, former President Bush, Jon Lovitz, Matthew Perry and Helio Castroneves. Aside from the wind chill factor of -48, it was a fun day. Today we attended the annual American Cancer Society Christmas party. There were lots of games for the kids, a small petting zoo and lots of fire trucks. They had one set up to take folks for a ride around the block. I think Zachary ended up riding it about 5 times. It was nice to see some of the families that we haven’t seen in awhile and somewhat sad to notice the ones that were absent. Family and friends are invaluable and irreplaceable, but there is something to be said for sitting in a roomful of people that ALL know what thoughts are floating around in your head, people that are unfortunate enough to have walked in your shoes and can fully appreciate the gravity of this life that has chosen us, without having to give an explanation. Maybe it’s a weakness of mine, or a comfort zone that I’ve gravitated towards, I don’t know. It just seems so obvious when I look around a room full of families that are going through this, that these people FEEL the pain on a whole different plane than your average bear. (Please don’t misinterpret these comments or thoughts as any sort of slight against those of you that have NOT traveled down this road. Instead, consider it a blessing that you have missed experiencing this world firsthand.)
One of Zachary’s doctors was at the party today. It was nice of her to take some of her personal time to be with the families. She was answering questions and visiting, so I took advantage of the opportunity and asked her some questions about future treatments for Zachary. For better or worse, we’re kind of in unexplored territory with his treatments. There just isn’t any long term data around to guide us when looking at his current therapy or while trying to map out a plan for when this one stops working. We know that the current chemotherapy has a finite life span of effectiveness. What we don’t know, (other than that it could fill a large book,) is how the Protocel is affecting the amount of time we’ll get out of this drug. We firmly believe that we have gained invaluable quality of life by taking the Protocel. We also believe that Zachary is going to have stable or improved scans this week. He looks great and feels great. He has had a couple of glitches with ankle pain in the last few days, but he was playing hard this week. The doctor agrees that because the pain hasn’t been consistent, it more than likely is not related to any bone lesions or tumor growth. Cancer pain has a nasty way of persisting and progressing. If it wasn’t like that, what fun would having cancer be? That’s the better part of its charm! (Back to the chemo thing...) There is another chemo agent that Zachary had in limited doses when he first relapsed. It is in the same family as the current chemo. Our doctor is checking into whether or not Zachary can take it like he is taking his current chemo, (without the secondary, more harsh agent.) Anyway, we’ll know where we stand by the end of the week. (I plan on getting some answers before the weekend kicks in……I’m funny that way.)
Tuesday we’ll be down in West Palm Beach getting Zachary’s port accessed and receiving his injection for the MIBG scan. Wednesday will be the scan in the morning, and then the bone biopsy and bone marrow aspiration in the afternoon. We should be home Wednesday evening. I know I should be going into this with confidence and an aura of calm, but once again I’m reminded of the fact that all of this wouldn’t be any fun if we couldn’t freak out once in awhile.
Scott
Tuesday, December 2, 2003 6:58 PM CST
What is it about scans that will absolutely drive you to the brink of insanity? Is it the uncertainty? Or maybe the way our minds wonder down roads that they should never have to travel. I don’t know, but I DO know that we have gone over 15 months without Zachary having a fever…..actually, he came close once about 8 months ago, but that was it! No fevers in over a year. Then, all of a sudden, in perfect timing with the scans set up for next week, he starts having some neck pain and gets all the way up to just shy of 100.5. On two separate readings he was 100.3 and 100.5. He had just taken Tylenol, so the doctor allowed us to wait the 4 hours to retake his temperature. I woke him at midnight last night (that was fun) (NOT) and luckily he had not spiked anymore. He made it through the night without incident and was fine all of today. So, for no apparent reason, his body decided to give us a scare. Now, for many of you that have been through this nightmare before, or are currently going through this nightmare now, you know what it is like to wait for news of scans. I usually try not to put too much thought into this process, because I have seen first hand the torture that it can inflict on a family. But, in the spirit of spreading the misery, I allowed myself to get sucked into the pre-scan blues.
There have been too many children that have had turns for the worse lately. We lost one child locally, and we have a few Caringbridge friends whose children have relapsed. All of this of course sucks. A lot! I suppose there is a more dignified way to convey my feelings toward this disease and the toll that it seems determined to take on our friends and family, but frankly Scarlet……I don’t give a ______!
Too many children diagnosed.
Too many children tortured by the treatments.
Too many families devastated by this illness.
Too many lives upended.
Too many children relapsing.
Too many young angels flying to heaven.
Other than yesterday, Zachary still feels great. I AM very grateful for this. We know from almost four years of this that we are truly lucky that he is still enjoying a high quality of life. The alternative is unthinkable. I’ve spoken with other families whose children are in extreme amounts of pain on a daily basis. They alternate between sobbing over their child praying for an end to the pain, and praising God for giving them more quality time without the effects of the cancer impeding with their child’s life. What kind of existence is this?
Someone out there NEEDS to find a crystal ball or magical wand or pixie dust, and use it to make all of this go away. Far away!
Scott
P.S. One way that I am trying to have an impact on the fight against this disease is by helping to spread the story of our battles. There is a reporter that has spoken with some of the families from our area about the tooth fairy project and the high rates of cancer in our region. She has done some freelance work already on this, and is currently working on a larger piece that she hopes to include families from Palm Beach County in. If you are a family from Palm Beach County that has been affected by childhood cancer, and you would like to speak with her about your story, please contact me and I will provide you with her phone number. I spoke with her today and shared our story of diagnosis and our battle against this disease over the past four years. She seems genuinely interested in bringing to the public a greater knowledge and level of understanding about our plight. You do NOT need to have had any teeth tested or have any knowledge about the tooth fairy project to share your story.
Saturday, November 29, 2003 11:36 AM CST
Thanksgiving has come and gone. The triptophan knocked me out for 2.5 days, so that is why I haven’t updated in awhile. (Are you buying any of this? Because if you are, I’ve got some chocolate covered key lime pie to sell you too.) Anyways, we had a wonderful day with the Mathis family in Boynton Beach. Plenty of food, fun, football, and games. Zachary had one little bump in the road on the way down, he got sick about one mile from our friend’s house. (Car trips wreak havoc on his system.) He woke me up at 3:30am this morning for some Zofran. (Sometimes the chemo stays with him for a few days and keeps him off his normal game.)
We had an interesting conversation last night while driving to Blockbuster for some movies. Here are excerpts from that conversation:
Zachary: “I’m going to travel around the world in an RV when I get older.”
Me: “Around the world? How are you going to cross oceans in an RV?”
Zachary: “I’ll have a boat too.”
Me: “A boat? It’s going to have to be a huge boat to hold your RV, isn’t it?”
Zachary: “Yeah, a big boat and an RV.”
Me: “Ok, sounds great. How exactly are you going get enough money for a boat that large and an RV?”
Zachary: “I’m going to be running my organization, S.A.F.E. (Saving Animals For Everyone.) That’s how!”
Me: “Oh, and that’s going to make a lot of money? Isn’t it going to be a charitable company?”
Zachary: “Yeah, but Mitchell is going to be a professional baseball player, and he’s already said that after he makes a lot of money for a few years, he’ll quit and come join me so we can do S.A.F.E. together.”
Me: “Well, as long as you’ve got it all figured out….I guess you’re set.”
Amazing how the mind of a nine-year old works. Things are so clear and simple. No messy logic to muddy up or cloud your thoughts.
Tomorrow we’re frying up a turkey for my folks and Rebecca’s grandparents. I’m sure I’ll be sleeping for another three days after that meal.
I hope everyone had a safe and delicious Thanksgiving.
Scott
Monday, November 24, 2003 8:55 PM CST
As founder and President of the Florida chapter of the Cancer Sucks Club, I am here to tell all of you that cancer does indeed still suck. A lot. A whole lot. Tons and tons of sucking by the cancer monster.
Through all of my joking and story telling, I’ve never lost sight of what all of our families are going through or how far we’ve all come as a group in this battle. Tonight was a very sobering reminder of just how great a toll this battle is having on our lives. I attended the viewing and visitation of Maya Marie Pettit. At 4 ½ years of age, she was definitely one of God’s little angels. I’m sure there are those out there that have prophetic words of advice to pass along at times like these, but I am at a loss. The logical part of my brain is trying to convince me that this is part of the battle, that little soldiers will be lost, and that we just have to accept that for what it is. But the emotional part of my brain is furious. Why does this have to happen? Why? I just don’t get it.
Zachary has two more days of chemo this week and then he will have a break for two weeks. We will be testing in two weeks, right before the next round. He is still hoping to somehow get clean scans so he can quit chemo.
Scott
P.S. Please keep Maya Pettit’s family in your prayers. Please keep Zachary in your prayers. Please keep all of the little angels and soldiers that have fought this battle or are still fighting this battle in your prayers. (I know I am asking a lot of all of you, but it would mean a lot to me if you would follow up on this one.)
Saturday, November 22, 2003 8:46 AM CST
Well, here we are, back at the Quantum House in West Palm Beach. Zachary of course has been spoiled by our home chemo experiences, so he is finding new and creative ways to rebel against the system that IS conventional medicine. He takes his Protocel like a champ, but he asks daily if we can quit the chemo. Our home health nurse is on vacation part of this week, and the doctor’s office is closed on Thursday, so we opted for weekend chemo at the hospital followed by three days of office chemo at the doctor’s office. This way Zachary will be done Wednesday afternoon and we won’t have to worry about it over Thanksgiving. The other event that helped us make this choice is the Broward County Fair. My partners and I are set up down there trying to sell pie bars. We had applied for and paid for this event about two months ago. Since then, we’ve heard from numerous people in the “know” that it is traditionally not a good event. The turnout is lower than reported, and it is very difficult for the food vendors to make any money. We’ve pretty much accepted that this whole month has been a learning experience that we will draw from to plan future events.
I just finished putting the Ella cream on Zachary, so he’s got about 1 hour before the fun begins. (Ella cream is like Emla cream, it’s used to numb the area where the needle will go into the port that is implanted in his chest.)
The phone number here is 561-494-0515, and we’re staying in the Hibiscus room. I’m sure Zachary would love some visits this week for any of you that are adventurous enough to come over. I’ll be working today and tomorrow from 12 – 12 at the fair. So Rebecca is flying solo with the Zman. Zachary remains to feel well and he is still gaining weight. We’ve had to buy new pants because his belly is too big for his old ones.
I’ll leave you today with a quick anecdote from our set up day at the fair. My partners and I had never been to this fair before. We checked in at the fair office and were handed a manila envelope and instructed to wait outside for a gentleman to arrive in a golf cart that would take us to our booth so we could set up. Outside of the office were two tents. One was being used for the Dept. of Health, they collect fees from food vendors that aren’t already registered with the state, and the other tent had chairs for the vendors to sit in while waiting to fill out paper work with the Health Dept. So, the three of us stood there for about 35 minutes waiting for this mystery person to arrive and show us our spot so we could start unloading and setting up. I remember making several comments that it would have been infinitely more logical to have a simple diagram of the fair to hand out to vendors, where the office could simply mark your spot with an ‘X’ and say, “you’re right there, next to the haunted house,” or “you’re right between the Tilt-a-whirl and the upside down rocket, watch out for flying vomit.” But NO, they had us sit there for 35 minutes while the guy we were waiting for drove back and forth in front of us trying to look busy. When he finally stopped and took our folder, he looked at us like we were complete idiots and pointed to the ground under our feet. We had been sitting in our booth the whole time! I will admit here that the number painted on the ground DID match the number on our folder; however, I didn’t have my Carny-to-English translator, so I really had NO chance of making that connection! Add to that the fact that all three of us have complete sets of teeth and no tattoos, and you could see where they immediately pegged us as outsiders.
Ahhhhh, a new venture. The ups, the downs, the bizarre. Blood, sweat and tears pumped full force into something new. Doesn’t it just get your juices flowing? I’m sure this won’t be the last story from our adventures to make its way here. Stayed tuned for more.
Scott
Sunday, November 16, 2003 7:50 PM CST
I didn’t realize that it had been so long since I had updated. Once again, no news is good news. I promise not to keep everyone ‘hanging on’ if there is major news…one way or another.
Zachary remains to feel great. He is still doing very well with school. Because of Thanksgiving next week, we will be doing his chemo Saturday thru Wednesday down in West Palm Beach. The visiting nurse is away on vacation, and the doctor’s office will be closed on Thursday, so Zachary will have to do Saturday and Sunday in the hospital (outpatient) and then Monday thru Wednesday in the doctor’s office.
The Key Lime Pie Bar business is now officially up and running. We had our first event last week in Stuart at the air show. It went pretty well. We definitely learned a lot about what works and doesn’t work at a show/event. We made some changes after the first night and doubled our sales for the second day. This weekend was a much smaller festival here in Jensen Beach. We did pretty well at that also, but more importantly, we learned some interesting lessons. We are working to improve our signage, and we are now officially “shopping” around for a Key Lime Pie Girl! One of the other vendors tipped us off to the fact that women are MUCH more approachable than men. Once we heard this, my one partner’s fiancé and Rebecca took over the two booths and blew us guys away with their sales! As much as I hate admitting that women can beat us guys at anything, they won hands down. (I must be scary looking or something.) So, unless my partners and I are willing to go through some sex changes, we’re in search of the first Key Lime Pie Girl! (I don’t mind wearing the Key West style floral shirts, but I gotta draw the line in the sand somewhere….especially after some guy from Key West was flirting with me……..I DEFINITELY don’t belong up front selling these thing.)
We’ve also are picking up restaurants at a nice pace. We’ve got four local ones, three up in Vero Beach with more interested, three in Melbourne ready to come on line, and several in WPB that are waiting for samples. Hopefully we can build that end of the business up enough to generate some income.
All of it is a learning experience. The events have long hours, many of them boring, but I’m confident that we will find our niche and grow from there. Everyone that tries these things loves them. We’ve had many, many people inquire as to how they can buy them by the case, so I think word of mouth will spread as we hit new areas.
This Thursday we will be debuting in our first county fair. The Broward Fair runs for eleven days. If you live near that area, come and see us.
Scott
P.S. All interested applicants for the Key Lime Pie Girl position can email photos to my private email at: emal@iamsodeadifrebeccareadsthis.com.
P.S.S. I’d also appreciate it if we could keep the whole “gay man hitting on me” incident between us…I’ve got a reputation to uphold.
Thursday, November 6, 2003 6:26 PM CST
I’m sorry that I’ve been A.W.O.L.
No, I have NOT been developing a new meatloaf on a stick.
No, I have NOT locked myself in the freezer so I could sit and eat Key Lime Pie Bars all day.
No, I have NOT gotten lazy.
First things first though……..
Zachary will finish another week of chemotherapy tomorrow. He has done very well this week. His fatigue level is higher than usual, but he feels well and has not had much nausea. Doing chemo at home has definitely added to our quality of life. As much as he hates chemo, he has not had many melt downs this week. Hopefully we’ll be able to ride this wave of new found energy and hope until we no longer need to do chemo. On that note, the doctor did tell Zachary that after his next scans in December, if the marrow comes back clean again and if the lesions are gone, he can discontinue the chemo.
Now, before you all start jumping for joy and celebrating, keep in mind that there are two HUGE ‘ifs’ in those comments. The marrow remaining clean, and the lesions being gone (for the first time in almost two years.) We all know that the Protocel has worked wonders up until this point, so lets all keep our toes and fingers crossed that we get the improvement we’re looking for.
Key Lime Pie Bar news:
If you hop on over to www.stuartnews.com, you will find that on the front page today there was a very nice story about our newest venture. They did a feature story about the pie bars and how we got started. This weekend is the Stuart Air Show, and it is our first major event. We delivered over 2,000 bars today to Miami-Dade College for the International Book Fair that is taking place there this week. The article has already generated a lot of interest locally, our phone was ringing off the hook after the story broke this morning. Hopefully we will be able to build on the excitement that currently surrounds this product. The Air Show is Saturday and Sunday from 9 – 5, so if you aren’t too far away….come on up and see a great show and try our addictive dessert.
Scott
P.S. If you go to the photo album..you can see our logo in the second slot. (Yummy looking...eh?)
Wednesday, October 29, 2003 6:26 PM CST
We’re half way through another week and still doing well. Next week will be another chemo week; hopefully all will go well with getting medicine and a nurse to our house. Everyone is feeling great!
Today while I was driving my route from Ft. Lauderdale back to Jensen, I was listening to one my talk radio shows and heard a segment that brought back some hard memories. One of the callers was talking about his “Make-A-Wish” and how he had endured cancer when he was younger. I couldn’t help but recall our experience with learning that Zachary was eligible for a wish. If you’ve heard this story before, forgive me, but the memory stayed with me all day and compelled me to recount it here for those of you that have not heard it.
Zachary was diagnosed on a Thursday. The 16th of March, 2000. Friday morning he was taken into surgery to have his port implanted. I remember Rebecca and I sitting in the surgery waiting area with Barbara (the child-life specialist) trying to pass the time and make small talk. In retrospect, I imagine we were still in shock. It had been barely 24 hours since we had learned that Zachary had cancer. I distinctly remember there being an awkward pause at one point, and then out of the blue, Barbara turned to us and said, “Zachary is eligible for a wish you know?”
I couldn’t believe my ears. I still remember the first thoughts that raced through my mind. I was thinking….”NO. Not Zachary. Those wishes are for kids that are REALLY sick….Zachary’s just got cancer.” And then a heavy dose of reality sunk in. CANCER. This doesn’t get anymore serious. (And then my mind tried some more denial.) “Wishes are for those bald headed kids that are going to die.” (I may have actually said that one out loud, because I remember Barbara explaining that all children that face a life-threatening illness are eligible for a wish.) I remember feeling empty inside and totally helpless. It didn’t seem to ease the pain to know that all children in his position were being granted wishes…..it was too easy to envision the worst case scenario.
A few days later when I had returned to work, I remember driving in our work truck and getting a call from Rebecca. She informed me that Zachary’s school had organized a benefit. Once again, shock and awe! “A benefit?” “They’re having a benefit for our child?” (This can’t be a good thing.) (You don’t have benefits for people unless things are REALLY bad….right?)
All of these wonderful memories bombarded me today for no apparent reason. I could easily blame the radio show for dragging me down memory lane, but the truth is, not a day goes by that I don’t think about a lot of what I just wrote about. I’m sure that all of our friends in the CSC out there are thinking the same things. Remember D-Day (diagnosis day), or relapse day, or any one of a number of days that are permanently etched into our brains.
I’ve written about Boggy Creek before. It’s the camp that Zachary has gone to the last few years, and it’s the place that we’ve spent four cancer family weekends at. During the parent breakout sessions, when the dads get together and talk about issues, I have brought up some of these memories. All of the dads were easily able to recount their personal “hit list” of days and events that were eerily similar to mine. I guess on some levels it was comforting to know that none of us is alone in this battle or with our thoughts and memories. On other levels it was torturous to see good caring parents and know that they had lived the same nightmares as you. Everyone knows why we have all gathered at the event, but when you hear the stories, and see how easily the emotions are brought back to the surface, you fully appreciate the incredible impact that this monster has on everyone it touches.
If you are in the CSC because this disease has touched your child, then all of what I have written about today is old hat. You are nodding while you read it wondering why on Earth I’d bring up old haunting memories when things are going so well. And if you are a CSC member by choice, meaning that you have joined to support a family member or friend, then please don’t mistake my ramblings for sadness or tragedy. We are lucky. We are lucky that we have survived this monster for almost four years. We are lucky that those haunting memories from the past are just that…..in the past. We are lucky to have had so many wonderful family members and friends stand by our sides while we face the monster head-on. We are lucky to have met so many amazing new friends that have allowed us to share in their victories and defeats, side by side, with smiles and tears.
Scott
Sunday, October 26, 2003 2:52 PM CST
Another week under our belts, and all I’ve got to show for it is an injured knee. I know, I know…..many of you are getting out your tiny violins to play some sympathy music for me. But seriously folks…this time I didn’t injure it bowling or doing some other sissy activity…….THIS time it is a VERY manly injury.
I hurt it while sleeping the other night.
(That better not be laughter that I’m hearing)
How do you injure your knee while sleeping? I don’t know….I woke up and it feels like I tore something……it’s been sore for three days now. If this is the best that 40 has to offer, I can’t wait to see 50 or 60…….
Zachary is still feeling great. He went bowling yesterday with my mom while Rebecca and I were at a wedding. Today I took him putt-putt golfing after church. Other than that, we have been trying to stay out of trouble.
We did attend a wonderful banquet on Thursday night. The Quantum House was honoring a gentleman with their first annual award for outstanding efforts in assisting with the dream of bringing the Quantum House from the drawing board to the finished project. I had contributed our family’s story for a video that was shown at the dinner, and at one point, Zachary was asked up to the microphone where he said; “I would like to thank everyone that has donated money to help Quantum House.” And then he said, “And I would like my parents to please stand up.” (He loves embarrassing us…) Being the only child that was there, he made a huge impression on all of the high society types that were there to help honor the award recipient and write checks to further the cause.
Scott
Tuesday, October 21, 2003 6:25 PM CDT
Zachary’s report card came home yesterday. (Drum roll please)
All A’s and B’s! He made honor roll! He got an award for that along with an award for being an “Independent Reader.” (Makes me want to send copies to the genius doctor in Gainesville that told us to stop chemo twenty months ago.)
Oh well…..I guess I can’t change the world…..yet.
Zachary got through his week of chemo without any problems. Yesterday was actually the first day that he threw up in several weeks. He got sick in the morning and then cheerfully went off to school.
Thank you to everyone that purchased items from Zachary for his school fundraiser. He ended up being the second highest seller in the school! (The girl that got number one comes from a Mormon family that has 8,735 members in Martin County alone.) (Just kidding…..some may live in Port St. Lucie County.) Anyways, he did a great job. This Thursday he will get to ride in a limousine with the other children that sold at least 50 items. They will be taken to CiCi’s Pizza for a pizza party.
Work is keeping me out of trouble this week and next week. Our driver is getting married on Saturday, so he took two weeks off. My partner in the fishing business and I are covering the shifts, so we’re each on the road three days both weeks. The other days are keeping us busy finalizing details for the new business. We’ve got several events coming up in November that we will be attending with the pie bars. (It takes all of the willpower in the world NOT to eat 3 or 4 of these things each and every day…..they are THAT good!)
Scott
Saturday, October 18, 2003 9:01 AM CDT
Has everyone been waiting with bated breath for the outcome of our saga?
Sorry about not updating earlier in the week. Between battling with the insurance companies, home healthcare providers, state agencies, working at my regular company, trying to get a new company off of the ground, staying updated on our battle with the nuclear plant, and saving the world (not really…but that made me sound MUCH more important) I’ve been busy.
GOOD NEWS:
The sympathetic representative from one of the bazillion companies that I’ve talked with this week came through on her promise to move mountains and make things happen. Tuesday at 11:50am (about 15 minutes before Rebecca was going to leave to head to WPB for chemo) she called and said that the chemo was being driven down from Orlando (about 1.5hrs. away) and that the chemo-certified nurse was driving up from North Palm Beach (about 40 minutes away.) So, mountains got moved, planets were shifted, stars were realigned, and Zachary got his chemo at home on Tuesday. The rest of the week fell into place rather nicely. The nurse was very good with Zachary. She worked with Rebecca well and actually showed her how to do some of the procedures in case of an emergency. She is supposed to be our nurse from now on. (I would offer to hold my breath, but blue has never been a good shade for me.)
Zachary hasn’t gotten sick once this week. It could be that not driving has saved his delicate equilibrium, or it could be that the reduced stress of not having to deal with the doctor’s office all week has helped. Either way, he has done very well this week. I’m not complaining (for once.)
Rebecca is at work this morning. Her last day is tomorrow. She had originally given notice because of another job opportunity at Zachary’s school, but we have since learned that the additional income she is making will preclude us from being eligible for our secondary insurance. This is another wonderful catch-22 that many families face.
Zachary is now stable enough for Rebecca to work part-time. We obviously need the money. She finds not one, but two different jobs that offer her enough hours to make some nice extra money, but not enough hours to be eligible for insurance. The extra income puts us over the edge for eligibility, so we will lose our secondary insurance. That will end up costing us more in medical bills than Rebecca can earn working those hours.
Lady’s and Gentlemen, lets do the CANCER FAMILY DANCE!
“TAKE ONE STEP FORWARDS……NOW TWO STEPS BACK……NOW TWO STEPS FORWARD…..AND FIVE STEPS BACK…..NOW THREE STEPS FORWARD…..AND TWO THOUSAND FIVE HUNDRED AND TWENTY EIGHT STEPS BACK.”
If you weren’t paying attention, you just back pedaled off of a cliff. Sorry for the inconvenience, I hope the impact didn’t break EVERY bone in your body.
Someone once said that, “Every cloud has a silver lining.”
I’m sure that is true, but what they failed to inform us all is that while every cloud MAY have a silver lining, silver can be melted down and made into bullets. Those bullets have only one real use, killing werewolves. Once you shoot a werewolf, you almost always attract vampires that are looking for an easy meal. They of course suck all of the blood and then realize that dying werewolf blood doesn’t sit well on an empty stomach. THEY get cranky and go on a killing spree that leaves innocent villagers and farmers dead across the country side. That of course puts a damper on the harvesting of crops, because all of those families are busy making funeral arrangements. A bad crop season always knocks the DOW down and sends investors into a frenzy. One or two of those guys ends up jumping out of a building, and you never know if they’re going to land on your head.
So, every cloud MAY indeed have a silver lining, but if you live in the big city, and a stock broker lands on your head, you’ll know to blame it on the clouds.
Scott
Monday, October 13, 2003 8:34 PM CDT
Ok. I’ve eaten 18 pie bars today and you know what? It hasn’t removed any of the stress. I just got a tummy ache for all of my troubles.
I’m starting to believe that maybe it is some sort divine plan to keep me writing journal entries. Why else would we have so much bull$%@ thrown upon us so frequently?
If I recall correctly, (and I usually do) I just wrote recently about the odds of the home health agency getting our “chemo at home” plan correct the first time. (I should have called Vegas and bet BIG money….I’d have made a fortune.)
I walked in the door tonight and Rebecca was on the phone, visibly upset. The call was from the home health nursing agency making arrangements for the nurse to come over to our house tomorrow to administer the Zofran to Zachary. (Some of you read that last sentence and probably didn’t notice a problem…..others read it and are beginning to put two and two together to get five…just like the idiots at home health care did.) Zofran (for those of you that are unlucky enough to know) is one of the anti-nausea drugs that are used for chemo patients. So, the obvious question of the day is; “Why are they all set to administer Zofran, but they made no mention of chemo?” Hmmmmmmmm…..very curious indeed! After calming Rebecca down enough to get some information, I called the gentleman (I’m using that term loosely) from the home health company and asked why we were NOT getting a nurse for chemo? His reply was interesting. “We don’t have nurses that are chemo-certified.” Oh no…..hell no……..no, no, no, no, no, no. There is NO way that you idiots have had this doctor’s order for a whole week, and you’re just NOW realizing that the funny long word at the bottom is a chemotherapy agent. No f’ing way! How is that humanly possible? “Well sir, we’re just a sub-contractor that the OTHER company uses when they can’t fill an order for nursing.” Ok, give me their number. (Nothing like working up the ladder of bull$#@& to find the moron responsible for making your life miserable.) Company #2……batter up! Why is this happening to us? “Well, we are a division of the company that your insurance company uses for home health nursing. Unfortunately, your county is one of the ONLY counties in Florida where we do not have licensed nurses. So, when that happens, we always sub-contract out to the aforementioned company to provide home health care. Whoever gave that contract out, failed to realize that they were referring a chemotherapy order to a company that has NO CHEMO-CERTIFIED NURSES.” Ahhh….the buck has been passed again. (Not quite.) Somehow I got a very sympathetic representative on the phone. She seemed genuinely upset by the predicament that we had been placed into. She promised to make it her life mission to fix this problem tomorrow…EARLY. I told her that I wanted two things from her. 1). I want this fixed early tomorrow. 2). I want an apology letter from whoever did this to us. (I’m not looking for money……just a letter from someone admitting they screwed up.) She assured me that she was taking notes and would make it happen. (Riiiiiiiiiiiiiiiiiiggggghhhhht.)
So, at 8:30pm our doorbell rang and a nice gentleman was standing there with a box full of medical supplies. IV pole, saline bags, syringes, Zofran, Benadryl, IV tubing, Heparin, all sorts of goodies……BUT NO CHEMO!!!!!!!
Here we are, all dressed up for the chemo ball, and no chemo date to dance with. How sad.
Scott
P.S. If you turn back the memory clock, you might remember that twenty months ago when Zachary relapsed, the insurance company lied, cheated, and used every dirty trick in their bag in a lame effort to have us doing chemo at home. At that time, the chemo in question had a much stronger agent that required much more nurse and doctor supervision. Obviously, we declined vehemently and stuck with the hospital. Now, here we are, twenty months later, trying to make life better for Zachary, (and giving the insurance company a chance to save tens of thousands of dollars) and they can’t get it right.
Saturday, October 11, 2003 8:17 PM CDT
1st an update……2nd…..ranting and raving.
Zachary still has a cold and cough. We’ve been treating it with over-the-counter medicines that have been allowing him to sleep well at night and get through the days without any complaints. (Knock on wood) Still no fever. Monday our chemo adventure will take a new and exciting turn. Zachary will get accessed in WPB and get his first round as usual, but after that the nurses will be coming to our house and finishing out the week. (If you call Vegas early enough you can probably get some interesting odds on the following: 1). Chemo showing up. 2). Other meds showing up. 3). Nurse showing up. 4). Nurse being competent. 5). My blood pressure not rising at least 45% over recommended levels.)
One of the web pages that we follow is for a young girl that is battling a brain tumor. She is a few years older than Zachary. We actually got to meet her and her family at the Protocel picnic several weeks ago. I was checking her update (she does her own) and was extremely pissed off by what I read. She was recounting her most recent visit to the doctor’s office and wrote about what a nurse practitioner had said to her about using Protocel. Here is the quote from her web page:
“She gave me the "when this doesn't work" talk so that I wouldn't be too let down if it doesn't. In fact, she told me that a positive attitude combined with prayers doesn't work and not to depend on those two things too much to be cured. AHHH!”
Ok. Now, I can take a lot of crap. (I have already) I can understand that modern medicine doesn’t have all of the answers. I can understand that research doctors need terminal patients to use as lab rats to help future generations of cancer patients. I can understand doctors and nurses getting frustrated with the loss of children year after year. All of this I can understand on one level or another. But WHAT ON GOD’S GREEN EARTH POSESSES A HEALTH CARE WORKER TO USE THOSE WORDS WITH A CHILD BATTLING CANCER? If you can answer that, then I guess you win the big prize…because I’m at a loss. WHAT DO THESE PEOPLE HAVE TO GAIN BY TAKING AWAY HOPE FROM SOMEONE? I’ve written about this before. Maybe I’m starting to sound like a broken record.
I also heard from a little birdie that there are some doctors out there in la la land that are sooooooo upset by the growing number of children using Protocel that they are considering “going after” the parents that write about it on their web pages or suggest it’s use to other families. Hmmmmmm. Where were these “protectors” when doctors told us to stop giving Zachary chemo and let him die. That was 20 months ago. (He is going to school, running around…..LIVING…for those of you in the cheap seats.) Where were these “protectors” when the one doctor suggested that we put Zachary on the Arsenic regimen? (That was a winner….NOT….nine kids tried it…..I think one lived for a few extra months…..) Wow……how encouraging. These advocate angels from heaven seem to be missing in action more often than not.
ONCE AGAIN I WILL STATE WHAT SHOULD BE OBVIOUS.
IF YOU DON’T AGREE WITH THE TREATMENT COURSE WE’RE GIVING OUR SON, THAT IS FINE….BUT DO NOT JUDGE US. MODERN MEDICINE HAS ALREADY GIVEN UP ON US……LET US CHOOSE OUR OWN PATH. THANK GOODNESS THAT GIRL HAS THE STRENGTH AND COURAGE TO DISMISS THOSE COMMENTS AND CONTINUE HER FIGHT.
Scott
P.S. Whenever I get down or depressed….I just open up a package and bite into one of our chocolate covered key lime pie bars……they’re just like coming home!
Monday, October 6, 2003 9:33 PM CDT
Zachary now has a cold. Hopefully it will NOT progress into a fever. I don’t want to jinx us, but we have gone for 14 months without one. (Yes….I am knocking on wood.) We will be watching him very closely.
Dessert? Dessert? Did I mention a dessert? Hmmmmmmm….I guess I did. But oddly, I somehow forgot to give details. How strange. I’ll have to make a mental note to be more inclusive with the information the next time I am telling a story like that. Oh well. Have a great night everyone.
What? I said goodnight….why are you still reading? Oh, that dessert thing. Well ok….it IS VERY GOOD. There you go. Now goodnight.
WHAT? I told you everything…..didn’t I?
Oh….you want to know WHAT kind of dessert……(makes sense.)
(Thinking out loud) Boy, the chocolate makes it unique.
We are the official south Florida distributors of…….
THE ORIGINAL KEY WEST KEY LIME PIE BAR.
This sinful dessert is an actual slice of key lime pie…(graham cracker crust and all) on a stick….dipped in chocolate. You can eat it on a stick….or put it on a plate and add some whipped cream and eat it with a fork……….hmmmmm….hmmmmmm ……good!
Scott
Sunday, October 5, 2003 9:25 PM CDT
I don’t know whether I’m happy or sad that there really isn’t a whole lot to report tonight. I guess a quiet “Finestone household” is a good thing. My brother from Pittsburgh and his family were in town over the weekend. They were staying with my folks in Vero Beach, so we got to see them on Friday, Saturday, and for dinner tonight. Zachary loves his cousins and loves the time he gets to spend with them.
The one medical glitch we had this weekend was something new on us. Zachary developed a phantom bizarre pain in his right foot. At first it appeared to be some sort of impact injury to the top of his foot. It was overly sensitive and he couldn’t put any weight on to it. He went from limping severely to hopping everywhere to avoid putting it on the ground. That was all Saturday morning. By Saturday afternoon he was outside playing in the driveway with his cousins running around. Then, the complaints somehow returned at dinnertime and persisted throughout the evening. My brother is a physical therapist, so he gave Zachary’s foot a thorough examination. He couldn’t find anything wrong, and he was suspicious of the hypersensitivity that Zachary was displaying when barely touched. (How does someone go from excruciating pain to running around without blinking an eye?) Today he hasn’t complained at all, so who knows? Maybe it was one of those 24 hour foot pains that you hear so much about. (Must be going around or something.)
There is no school tomorrow, so Rebecca and Zachary will find something interesting to do. I’ve got work all week. I don’t write too much about work in these journals, but in addition to my fishing tackle business, I’ve recently begun a new venture with my partner and another friend. We are the distributors for southeast Florida for a dessert item that we discovered while in the Florida Keys. It is exciting to plan and execute a new adventure. Hopefully it will do as well for us as it is doing in other parts of the country. I will keep you posted.
Scott
Wednesday, October 1, 2003 6:04 PM CDT
[SO LITTLE TIME…SO MUCH TO WRITE ABOUT]
I try to make it a point to start journal entries with an update on Zachary. Sometimes there is no news (which is good), but when there is, I think that it is only fair that his web page does mention him once in a while.
Monday evening Zachary complained of blurred vision and some dizziness. We had been to the water park on Sunday, so I dismissed this as possible water in the ears causing equilibrium problems. Tuesday morning Rebecca got a call from Zachary’s teacher. She called from her cell phone concerned about Zachary. He was complaining about blurred vision and he was dizzy and stumbling. Rebecca picked him up from school and took him down to WPB to see the doctor. When Rebecca called me to tell me where she was headed, I went immediately into “guy” mode. (Solve the riddle.) I called Susan Griffin and asked if she thought the recently increased dosage of Protocel could be causing this problem. (We had just started giving Zachary a double dose before bedtime to help keep a level in his system during the night.) She didn’t think that was it and asked if there was anything else that we had recently changed. I remembered that during the previous week we had tried Scopolamine for the nausea from chemo. It is a patch that is worn for 72 hours. It slowly absorbs into the system. Susan hung up from our conversation and looked it up on the internet. She called back with interesting news. Scopolamine can cause blurred vision and dizziness in the days following its usage. It also is not a good idea to touch the patch and then rub your eye. It will give you the same problems. The oncologist examined Zachary thoroughly and determined that he had no neurological problem or cancer problem that was causing the symptoms. She suggested seeing an eye doctor to see if he needed glasses.
Today was his eye appointment. He was SUPPOSED to have his pupils dilated when he arrived, but they took one look into his eyes and realized that they were already dilated about as much as any one human can be dilated. Evidently our genius son had handled a fresh patch on Monday morning and then rubbed his eyes. They did test his vision and came to the determination that he needs reading glasses. (Just barely.) They ordered them and set up a follow up appointment for three weeks.
Today is Rebecca’s birthday. Evidently yesterday Zachary discussed possible dinner options with Rebecca for tonight. Now, on Wednesdays I get up at around 5:15am to go on the road with my work van. I always bring Zachary into our room and let him finish out his morning sleep in our bed. While walking a groggy child across the house this morning, Zachary looked up and said what sounded like, “We need to take mom to Scores for dinner tonight.” (For those of you that have never heard Howard Stern’s radio show, Scores is a dinner/bar in NYC that is famous for its topless entertainment.) I looked at him with the confused look only a father can give, and asked, “What?” He repeated, “We need to take mom to Scores tonight for her birthday.” Hmmmmmm (I have to admit that in some remote part of my brain, I was trying to work out the logistics of actually getting to NYC after work and catching their show……but then reality slapped me square in the face and I dismissed it as Zachary just talking in his sleep.) When I got home, I learned quickly that what he was saying was this. “We need to take mom to Sa Ku Ra’s for dinner tonight.” (It’s a local Japanese steak house.) (If you say it quickly you’ll see where I got confused.)
This last part of my journal entry will be dedicated to some interesting news that we received today. So, gather around boys and girls, I’ve got a story to tell you. (Forgive me if you already know most of the details, but I figured there might be some newcomers that haven’t heard all of the history.)
The year Zachary was diagnosed, Rebecca and read a newspaper article about the Tooth Fairy Project. Basically this group was trying to collect baby teeth to use in a research project that was focusing on radiation emissions from the nuclear power plants. Since we had always lived within 10 or 12 miles, we started to do some research of our own. After a few weeks of digging as deep as we could, we contacted a law firm and made an appointment to meet with them. We presented everything we had and asked for their advice. After absorbing all of the information, they came to the conclusion that they only way we would know if there was any cause to move forward would be by testing some of Zachary’s baby teeth. We provided samples and they sent them off. The results came back with very high levels of the radiation that is a by-product of the nuclear plant. The firm then embarked on a two-year project to see if there was any action that could be taken. Earlier this year, they filed suit in Federal Court. The case was assigned to a Federal Judge that would have the sole responsibility to determine whether or not to allow the case to proceed. FPL (the power company) filed a motion to dismiss. Our attorneys were given the opportunity to respond to that motion. That all happened over six months ago. Then our judge had a heart attack and had all of his cases reassigned to a different judge. We were told that the criminal cases would be addressed first and then the civil cases. There is no time limit for these judges. They can make their determination in weeks, or years.
Today our attorney called. I can’t remember the last time that four words surprised me so greatly. “MOTION TO DISMISS DENIED.”
The case is going to trial. It may take a year or two for that to happen, but our firm will be working to build a case on behalf of our family, and on behalf of the other family that filed almost two years after losing their son.
I don’t know where all of this will lead us, but I have always tried to convey to all of you the story of our lives as they’ve unfolded.
Scott
Sunday, September 28, 2003 8:15 PM CDT
*****NEW PHOTOS****NEW PHOTOS*****
The weekend has come to an end. Zachary is feeling good now that chemo is over for another round. Today was the Connor Moran Children’s Cancer Foundation’s annual Rapids Water Park outing. It was supposed to rain all day, but it turned out to be a perfect day for going to the water park. Zachary had a blast. We went on just about every ride they have there. Looking back over the day, I would have to say that the one ride that I could have lived without was the new ride that we took a chance on. It is basically a very short steep tight tube that gets you up to about 387 mph before shooting you into a toilet bowl shaped bowl that you zoom around and around until you lose speed and “drain” out of the bottom like a turd in a toilet. You then drop into a 6.6’ deep pool where you try to regain your senses before swimming to the edge. The tube part was so fast, I think that I actually traveled through time and briefly saw my future. (Oddly enough there was no repeat of that ride in MY future.) Once you shoot out of the tube, the dizzying effect is so overwhelming that you can’t see straight. By the time you regain some of your senses, you are dropped (usually upside down) through the drain. This is the kind of ride that should have a tattoo kiosk at the exit, so you could give yourself permanent bragging rights by tattooing on your arm or chest that you survived the ride.
Yesterday Zachary and I had another one of those fun conversations that start off with him informing me that he is interested in stopping chemotherapy for a couple of months. I usually don’t like to play along when he starts that game, but I decided to give him some extra rope to see just how far he would hang himself. Once he made the statement, I was forced to respond with the obvious question…..”What happens if we stop the chemo and the Protocel is unable to stop the cancer?” His immediate response was, “I die of course.” (The beauty of these conversations is you can usually lead a nine-year old down the road that YOU want to travel. It’s like an attorney; you never ask a question that you don’t already know the answer to.) My next question (which I knew he would answer incorrectly) was, “Well, if that happened, who do you think would be affected by your death?” He responded with, “No one. I can’t think of anyone.” (Buzzzzzzzzzzzz wrong answer.) This is what I said. “Zachary, the decision that you are talking about making is an adult decision. Mommy and I have always tried to include you in these types of decisions. From now on, you will NOT be included.” (This got me an immediate response.) “Why dad? Why not?” “Well”, I said, “I asked you an easy question. You should be able to name hundreds of people that you KNOW care about you and would miss you if you died. But you chose to give me an answer that is NOT an adult answer, so you are showing me that you really DON’T want to have adult conversations.” (He didn’t like that. He said he was only kidding when he couldn’t name anyone. But the bottom line was I got him to rethink his position.)
This is a dangerous game. You really don’t want to instill a sense of guilt surrounding the whole death thing. Especially when that is the road that the doctors are promising you will eventually travel. On the other hand, you don’t want to allow a child to disassociate themselves from loved ones and friends. That would only make it easier to give up. (I love walking the balance beam on these issues. It really makes life interesting when you get to have these discussions with your child.) NOT NOT NOT
Anyways, I think we’ve temporarily past that hurdle. In the meantime, we’ve made some inquiries into the possibility of doing Zachary’s chemo up here near home. He would still have to travel to WPB for Day #1 to get counts done, get accessed, and get his first round. But after that we would be doing the remaining four days up here. It isn’t finalized, but we’re working on it. We’re thinking it will give him more quality time up here, with less travel time to the doctor’s office. I’ll keep you posted.
Scott
Wednesday, September 24, 2003 8:23 PM CDT
Chinese Proverb
“Man who says ‘It cannot be done’ will try to hinder the man that is GETTING it done.”
The above quote (more or less verbatim) was used by one of the speakers at the Protocel picnic. She was telling her story and wanted to convey how she felt about the many people that tried to dissuade her from using Protocel.
There are so many different emotions and feelings that play upon the psyche of families that are dealing with this disease that it is sometimes difficult to separate and evaluate all of the information that gets thrust upon them. It is my opinion that the vast majority of folks out there truly want to help. The problem that I see popping up all too often is that of a line being crossed that has advice givers developing a level of resentment when their “plan” is not followed. Please, please, please, please…..if you take only one piece of advice from my journal entries, please take this one. Passing judgment on another family for the choices they make for their loved ones is a road that will only lead to disaster. It will take you into the depths of resentment and leave you feeling barren and empty inside.
If you believe in a therapy, or if you hear of a friend that is doing well on a new drug, then by all means, pass along the information with an open mind and without expectations. I firmly believe that a true friend will know where to draw the line. Once you wonder down the road towards judgment, you are painting a target onto your soul and handing the darts of blame to people whose troubles are unique and private.
I have many clients that follow Zachary’s progress with great interest. Every week while I am on the road I find myself giving updates. Many of these clients/friends have taken a very keen interest in Protocel and have tried to pass along the information to friends and family members that find themselves battling the monster. Today, I had several of these kind folks convey their frustration with their inability to convince friends or family members to try Protocel. I tried to allay their stress by explaining that as a family in this position, it can be extremely overwhelming to have so many different therapies and medicines placed on your table, and then to be put into the unenviable position of having to chose the “right” one. How do you make your choice? Do you listen to the wisdom of conventional medicine that has gotten you through difficult times before? Do you take a chance on something new that modern medicine is “hoping” will be an answer? Or, do you gamble on an alternative that has relied mostly on testimonials to further its cause?
I am here to tell you that there are NO wrong answers. I can say with 100% confidence that the right answer is the one YOU choose! No matter what the outcome is, short term reprieve, moderate success, long term success, or even death, you need to embark on your chosen path with the confidence and knowledge that you have done everything humanly possible to help your loved one. It may not mean much coming from a slightly deranged person like myself, but I will NEVER judge any of you for the choices you make. If you investigate Protocel and feel that it is not the answer your family is looking for, then I will commend you for spending the time to check it out and I will pray that you are able to find a means to healing your loved one.
The only way I profit from anyone trying Protocel is through the knowledge that I have passed along information that may help another family get the same success that we are confident we have enjoyed from this therapy. If you have weighed this issue and are still unsure, we are working on organizing a picnic like the one that we just attended in Pittsburgh, to take place here in Florida. We envision an event that will have people from many walks of life telling their stories and helping to explain how they have benefited from Protocel. Hopefully we will also be able to bring down some of the folks that have been involved with Protocel for many years. All of this is still very much in the infant stages of planning. Nothing has been written in stone…..yet. If you have ideas or comments that are of a constructive (as opposed to destructive) nature, then I am very open to hearing them. Please email me directly or call and I will gladly listen to what you have to say. We are going to be working with Susan Griffin on this, so she can be reached through Jake’s page if you would rather deal with someone that hasn’t lost all of their marbles yet.
Remember folks, this is just in the planning stages. We attended the Pittsburgh event and it inspired us to work on an event that would have greater access for all of our southern families. All of you are included in this up to the point where you want to be.
Scott
Monday, September 22, 2003 6:06 PM CDT
We are home again. The traveling Finestones have returned. (That didn’t sound half as exciting as when I thought about writing it.) Anyways, we’re home. All in all it was a great trip. (There of course stories to tell……there are always stories to tell when it comes to our adventures.) First things first.
Zachary is still feeling great. When we landed at WPB airport today, we immediately drove to the doctor’s office and started another round of chemotherapy. Zachary weighed in at 71lbs. (5 or 6 of those pounds can be directly attributed to the food in Pittsburgh. There were a few meals that have been on our itinerary since we made the plans to travel there.) Chemo went well. Afterwards Zachary again informed us that he no longer likes the way it makes him feel and that he wants to quit. (I’m a little slow on the uptake, but I’m beginning to see a pattern here that seems to pop up one week out of every three. Let’s see, he does chemo for one week and is not happy about it. Then, he’s off for two weeks and never mentions it. Hmmmmmmmmm…..I’m sure I’ll figure it out sooner or later. Maybe it has something to do with the moon phases or something.)
I did get an email back from Zachary’s diagnosing doctor regarding the amount of time we can continue on this chemotherapy. He feels that as long as we are getting good results, we should not change our course of action. (That is pretty much what we had planned anyways…so it was good to read an independent confirmation of those thoughts.)
Aside from the obvious family interactions, there were three food reasons for traveling back to Pittsburgh. Primanti Bros., the “O”, and a burnt almond torte. When we landed on Thursday we knew that my brother would not be off from work until later in the day, so we had about 4 or 5 hours to kill. We made a beeline to Oakland to have lunch at the famous ‘O’. This small hot dog and sub shop has been an institution in Pittsburgh for years. It sits on the busiest intersection in the city, in the heart of the campus of the University of Pittsburgh. They are known for their French fries. They sell like 30,000 lbs. of potatoes each week. When you order food in there, you have to go into a special line in the back for the fries. They sell melted cheese, gravy and an assortment of other goodies to dip them into. It is impossible to appreciate the experience unless you have been there….but take my word for it….it’s worth the trip. After lunch we drove to the nursing home where my 98 year old grandmother lives. She is in the Alzheimer’s ward where she has been for several years. She seemed to brighten up when she finally recognized me, and we had a really nice visit. It was very touching to have her only words of the day be directed at Zachary….she said very clearly, “How are you doing?”
Saturday we had tickets to the evening hockey preseason game, so before the game we planned on dinner at Primanti Bros. This is another Pittsburgh institution. They started out many years ago with one location in the commerce area of the city known as the “strip” district. (Not for the topless joints.) Anyways they make this incredible sandwich. It is a steak sandwich on Italian bread that is soft. The steak is more like a burger patty that they cover with a huge layer of their special fries and coleslaw. They’ll add a fried egg at request which really makes your cholesterol jump nicely. I’m told they have a store in Ft. Lauderdale…..I WILL be venturing down there so I don’t have to wait that long for their amazing sandwich. The last treat was a very nice surprise that my sister-in-law got for me. It is an amazing dessert called a burnt almond torte. Basically it is a very moist white cake with a pudding layer in the middle, covered with a sweet homemade icing and then topped with a layer of shaved sugar-coated almonds. YUM! (Good thing all of these foods are fat-free.)
Saturday night was the hockey game. Mario’s publicist had tickets waiting for us at will call, so we had no idea what kind of seats they would be. When we got inside we were very pleasantly surprised to find ourselves in one of the two “igloo” sections. The igloo sections are between the blue lines (center of the ice) and go from the floor up to about 30 rows. They have a special entrance and the have their own concession area and rest rooms that are much nicer than the regular ones. They really made us feel like we were special guests. About half way through the game, some of the guys from the publicist’s office stopped over and gave Zachary two hockey sticks and two Penguin’s back packs full of goodies. He was really on cloud nine. The Penguin’s lost 1-0, but we still had a wonderful evening.
Sunday was our biggest adventure. The Protocel picnic was to take place from 2pm until 8pm. We were told it was about an hour from Pittsburgh. The directions that were mailed to us gave very explicit instructions on how to get there. Well, let me tell you something. I can follow directions with the best of them…..AND I’m not afraid to pull over and ask for help if something doesn’t seem right. So, this is where our adventure begins. We followed the directions to the letter, and ended up going 1.5hours out of our way. The road that we got on (Interstate 80) is right out of the twilight zone. There must have been like 15 or 20 miles between exits. So, once we realized that we had been given wrong instructions, we still had to go another 15 miles to exit, refuel, and turn around. We ended up getting there around 4pm; right when they were sitting down to eat dinner. We ate and visited and heard many of the speakers.
It was really nice to put faces with some of the names of people that we’ve spoken to. Some of the testimonials were amazing. Truly inspiring stories of success from a variety of people were given. We also got a chance to speak with some of the most knowledgeable Protocel people on the planet. We picked their brains and got some very valuable information about how to proceed with Zachary’s intake of this medicine. While there, we had the opportunity to buy another jar at a greatly discounted price, so we took advantage of that. I also purchased a book that tells the amazing story of how Protocel came to be, and how the makers fought for years to make it available to the public. Anyone wanting to read this short book is welcome to my copy…..just ask. There are charts, copies of letters, diagrams, and tons of data that show the amazing story of Protocel.
We ended up staying until almost 7pm, and then we headed home. It took about an hour to get back to my brother’s house. (Three to get there, and one to get back….hmmmmmm.)
Scott
Friday, September 19, 2003 5:24 PM CDT
Just a quick update from Pittsburgh.
Well, it would seem that living in Florida with the constant threat of hurricanes was not enough for us. We heard our first chance at experiencing a storm this year was thwarted because of a high-pressure system that sucked the storm up the coast towards the north. So, we of course flew to Pittsburgh so we could get right into the path of the remnants of the once giant monster. Somehow, the storm veered slightly east, and missed Pittsburgh by 30 miles. We ended up only getting a little bit of rain, with no wind to speak of. (Next time I’ll have to parachute into the eye with a life preserver and ride out the storm while it’s still at sea.
We got the call today from our doctor. Zachary’s most recent scan is showing no change from the one we did almost three months ago. There was no improvement, and there were no new lesions. This is good news. It could have been better, we could have shown even more improvement like we did last time, but we are still happy. Stabilization is a good thing. It also gives us more confirmation that the last set of scans weren’t a fluke. Everyone feels great; we’re having a very nice visit with my brother and his family. Tomorrow we will get to go to the hockey game; Mario’s guy came through for us and got us tickets for the pre-season game against the Islanders.
Traffic in the big city still sucks. It’s a nice place to visit but………..
Scott
Wednesday, September 17, 2003 9:31 PM CDT
Since we are flying to Pittsburgh tomorrow morning, I felt it would be in my best interest to update the page now, to avoid the mutiny that would surely occur if I skipped another 4 or 5 days. (My brother has a computer, so I may be able to update from Pittsburgh.)
Well. Quite a lot has happened in the past few days. Nothing earth-shattering mind you, but enough to give me material for the journal. So, here we go. First things first. Zachary was schedule for his 3 month scan last week. For those of you that read those entries, you will remember that the hospital could not perform the test last week because their dog ate the isotope. Well, here we are one week later and the dog has been locked in a closet to prevent a similar mishap. Yesterday Zachary had his injection of radioactive isotope. Once again he threw up while getting it. About four hours after receiving the injection, he started complaining of itching all over and broke out with hives. I immediately had Rebecca give him Benadryl. We called the doctor and waited for the drug to take effect. After about 30 minutes the hives started to disappear and he started to get tired from the medicine. When the doctor finally called back, she said we did the right thing by giving him Benadryl and agreed that he probably had a reaction from the isotope. From now on he will have to be pre-medicated with Benadryl before those injections. Interestingly enough, the tech at the hospital today informed Rebecca that there was "No chance on Earth that the isotope gave Zachary the bad reaction." Hmmmmmm. Interesting. No chance huh? I'm sure he is correct. It must have been the oxygen level in our house. Maybe one of us breathed too hard and caused an abnormal amount of carbon dioxide to accumulate around his head. Or, maybe a rogue microscopic organism somehow landed on our planet and found our house and our son....and ONLY our son. Sure, that must be it. It couldn't possibly be the only medication that he received that day. (Silly of me to think so in the first place.)
Sunday night Zachary came into our room and announced that he was willing to go to school without a bandana on if I shaved his head to get rid of the few odd hairs that he was embarrassed about. I shaved his head like he asked and waited for Monday morning to arrive to see if he was going to stick with the plan. He put a bandana into his back pack for insurance and got into the car with Rebecca. As he was pulling into the school parking lot, he put on the bandana and changed his mind. (He had on his t-shirt that read “Who needs hair with a body like this?” Well, Tuesday was a different day entirely. He left for school with no insurance. No bandana in his bag. I had a talk with him Monday evening. I told him that kids can always find an excuse to make fun of other kids. Whether they are over weight, too skinny, wear glasses, hearing aids….etc. I told him that living your life always trying to impress or live up to other kid’s ideals will only make you sad and frustrated. I guess my little speech touched a nerve. He went to school today with no head covering also. Tonight we went out to dinner to the pizza place that raises money for his school on Wednesday nights. So, there were many children and staff members from his school in attendance. Once again he did not wear any head covering. Hopefully he has come to some sort of realization about looks and self image. Tomorrow he plans on traveling without his bandana. (Maybe the security blanket has been ditched.)
Monday I started experiencing some pain in one of my teeth. Now, before I go any further, I feel compelled to say that my tongue has healed completely. So, back to my tooth. Well, I was noticing that it was sensitive to hot foods and pressure when I was biting down. Yesterday I woke up and it was worse. I knew that I would be on the road for work all day today, and tomorrow we are leaving for Pittsburgh for four days, so I called my dentist and asked for an emergency appointment. That called back and said I could go in at 3pm. At 3pm I was there with a smile on my face. (Not really, it was starting to hurt more.) They took x-rays and looked all over for the culprit, but they could not see any problems. Then the dentist took out this tool that allows him to apply pressure to very specific parts of each tooth one section at a time. Using that device he was able to pinpoint my problem. Once he found the spot, he came to the realization that I had a very tiny crack in my tooth. (Evidently I bit down too hard on a marshmallow or some Jell-O.) He gave me the options. Temporary crown to see if the it would fix the problem and if so, then a permanent crown. Root canal. Tooth removal. I opted for the first choice…..a temporary crown. So, more needles in my mouth…..more smoke coming out of my mouth……yada yada yada. 1 ½ hours and a sore mouth later, I had a temporary crown and a bank account that was about $700 lighter. So far today it has held up. No pain when I breathe in or chew. This is a good sign.
I’m beginning to notice that getting old is painful AND expensive. There are some contradictions that have me somewhat confused. The doctors want you to eat plenty of fiber to keep your digestive system working properly, but how are you supposed to eat the cereals that are basically sugar coated mulch chips without chipping your aged fragile teeth? You try chewing on bark and see what happens to your teeth. I don’t know…maybe I’m just a complainer.
I’ll try to update the page once I get results from the MIBG scan. It should be tomorrow or Friday.
Scott
Sunday, September 14, 2003 6:47 AM CDT
If you are adventurous enough to have ventured into the guest book, you may have noticed an entry by Susan that merely reads, “Journal entry, June 25th.” Pretty cryptic huh? Is that the date the world is going to end? No. Is that the date all of the Protocel families are getting together to practice the secret handshake? No. Actually, several families have been referred to Zachary’s page in search of information about Protocel and our experiences. Unfortunately I have the attention span of gnat, so my journal entries ramble on about a variety of subjects that range from the migration trends of the southeastern three toed hairless sloth, to the mating habits of certain insurance and hospital personal. (You may remember me suggesting that someone do some unnatural acts to himself or herself.) Anyways. The date that Susan was searching for is actually 6/27/03. That is the date that we got our results from St. Mary’s from Zachary’s bone marrow and MIBG scans after being on Protocel for 3 months. So, if you are lucky enough to have tripped over your chair and accidentally landed here in this journal today, then you have a reference point to leave from. Simply go to the journal history and scroll down to the above-mentioned date.
Zachary News:
Medically Zachary is still doing very well. He is fully recovered from his last round of chemotherapy and he is still doing well with school. Sadly, I do have some serious news to report that does NOT involve Zachary’s health, so don’t panic. I would have reported this earlier, however it has just come to light in the past 12 hours. Evidently, there is some sort of universal cosmic link between Zachary’s performance in bowling, and the fate of mankind. This may be a lot to absorb, and I am sorry to be the one dropping this bomb on all of you, but once again, Zachary had a melt down because of a poor bowling score. I know that no normal human being would subject themselves to that amount of pressure at the age of nine. I mean seriously folks; can’t we all just play the game and have fun? You would think that having had this conversation many times, that he would have learned. That is what has drawn me to the conclusion that there must be more riding on his scores than just pride. I’m guessing that when he bowls badly, hurricanes are forming, tornados are brewing, earthquakes are imminent, and massive asteroids are veering towards earth at alarming speeds. So, my advice to all of you is that you pay VERY close attention to any journals where I mention Zachary’s bowling scores. Because when he is bowling, it’s not just a game, the weight of the free world is on his shoulders!
Whew! I’m glad that I no longer carry the burden of that knowledge alone.
Well, as you may have guessed if you’ve read between the lines, Zachary managed to ruin a perfectly good evening last night for our friends and us. He has lost bowling for two weeks. (It would have been one, but we’re going to Pittsburgh on Thursday and won’t be back until Monday. After that he’s got chemotherapy, so he wouldn’t have been bowling anyways.) I know I must look like the meanest dad on the planet, but the line had to be drawn in the sand. He has to learn to be a kid. He has to learn to enjoy the games without worrying so much about the outcome. (WOW, what a shocker! Our cancer kid got somewhat spoiled during his 3 ½ year battle and now we’re having to deprogram him. I’m sure we’re the ONLY family that has made this bed and is now having to lay in it.) (That was sarcasm....don’t feel obligated to write me a ten page letter about how you’ve done the same thing.) Having said that, it may be therapeutic for all of you parents to sit down and write a brief guest book entry relaying your tales of spoiling your child and then trying to figure out how to reverse the process.
Not only will this excerise be good for you, but I might actually find some answers for the Zman. (Lord knows we need them.)
Scott
Wednesday, September 10, 2003 5:08 PM CDT
Today was an early release day at school, so Zachary only had to be there for about 4 hours. His interim report card came yesterday, (every 4.5 weeks they give you an update) and he scored an “S” for Satisfactory in every single category!!!!!!!!!!!!! The teacher even made a notation with a smiley face that said, “Doing Great!” So, (as I puff out my chest and grin from ear to ear) our little man is proving that he can persevere through rain, sleet, snow, and chemotherapy.
Here is a question for the masses. Is it just me, or does it seem that now that we are in the “cancer” loop, we are meeting and hearing about hoards of people that have cancer? I really don’t remember growing up and hearing about this many people. Some of it I attribute to the Protocel. We have many friends and customers that have followed Zachary progress with great interest over the past few years, and once we started getting good reports, they started coming out of the woodwork with friends and family members that were battling cancer. They all want to know about the Protocel and how we have used it to get to where we are today. I gladly help anyone that wants the information. Even one of our most ardent business competitors contacted me through some mutual customers and we have spoken several times about his brother’s cancer and how Protocel may be able to help. It is amazing how this disease can absolutely devastate and destroy your world, yet at the same time it creates a whole new world of friends and acquaintances that work with you to overcome the many obstacles that are thrown your way. Some of our closest friends today are people that we would have never met if it had not been for the cancer. I’ve heard people say, “Maybe that was part of God’s plan, he wanted you to meet this family or that family and the cancer has brought you together.” I say, “Why couldn’t we just have ran into each other with our cars, or spilled something on each other at a restaurant?” I KNOW we would have met had that happened! (For those of you in the cheap seats, these are mostly rhetorical questions that don’t require an answer.)
I’ve come to the conclusion that I could go the rest of my life without hearing about another child, brother, sister, uncle, aunt, mother, father, grandmother, grandfather, cousin, or friend getting cancer and it wouldn’t bother me at all. (I’m not saying that I want to have blinders on, I just don’t want anyone else to join this club.) The more I hear about people fighting this monster, the more I feel compelled to offer help. Other than the Protocel information and my experience, I really don’t have much to give. I just finished the latest Harry Potter book last night; I could sure use one of those magic wands. I’ve got a few ideas as to what I could do with it. (Somewhere on my list would be turning certain insurance and hospital personal into puss oozing immobile maggot larva.)
Scott
P.S. If you had just eaten a meal before reading that last line, I apologize.
Monday, September 8, 2003 1:28 PM CDT
The most current round of chemotherapy ended on Saturday. (We had to do the weekend day because of the holiday last week.) Zachary and I survived the floor without any problems. We read a little bit, watched some TV, and Zachary did his best to sell products for his school to anyone that was unlucky enough to wander into his line of sight. Sunday Zachary and I attended our church’s “Back to Sunday School” breakfast and then did the church thing after that. Zachary started to experience stomach pains near the end, so we headed home early. He walked in the house, jumped onto the bed, and passed out for about an hour and a half. Today, he did pretty well at school. He made it until 12:30pm and then called home because of stomach pains again. He got home and passed out for about 2 hours. (I’m thinking this last round of chemo really kicked him in the butt.) Other than the stomach pain and fatigue, he seems to be doing ok.
I would like to thank Bo, Pam, Kim, and “A Friend” for their efforts with my latest project. Their contributions will be forever remembered, (if I end up using all of this for a book.) Bo had a good point though. This really was a much different topic than the Christmas Songs. You really have to have a twisted mind to come up with reasons to give your child chemo other than for cancer. So, while I applaud those few that are mentioned above, I also feel obligated to mention that I’ll be saving you a room with plenty of pads once the men in white coats catch up with me.
The hospital called this morning. Zachary was scheduled to have an MIBG scan this week. He was supposed to get his injection of radioactive isotope tomorrow, and then have the scan on Wednesday. Well, evidently the nuclear medicine department at St. Mary’s was unable to get the isotope delivered this week. The pharmacy that makes the stuff said they needed more time. Now, without going into a protracted explanation as to how stupid these people are, I would like to say the following: All over this wonderful country of ours, there are hospitals doing this scan with this isotope every day. YES, it does have a special process that requires some time to prepare it. And YES, our hospital is only doing a small number of these scans each month. And YES, I really don’t give a $@#*! When I spoke with the hospital CEO last year, he supposedly fixed this whole situation. He got the head of nuclear medicine on the phone and assured me that the isotope was readily available and that whenever we needed it, the hospital would provide it. I gave him an “out” when we were talking. I informed him that the doctors over in Ft. Myers were doing this scan every day, and that we would travel over there if that were what needed to happen. He was very much against that. (I imagine he was only looking out for our well being, not wanting us to travel unnecessarily…….I don’t think it had ANYTHING to do with the loss of revenue his facility would incur if they were unable to do this scan.) [Riiiiiiiiiiiiiiiiiiiiiiight] So, I took him on his word and we have done this scan 2 or 3 times in the past year without too many problems. Now all of a sudden, it is a problem again. They have rescheduled the scan for next week. And while I am experienced at snorkeling and swimming under water, I do NOT intend to hold my breath.
Ahhhhhhhh…..what would a Monday be without me ranting and raving about one thing or another? Certainly not what we’ve all come to love and expect.
Scott
Friday, September 5, 2003 7:29 PM CDT
School today went a little bit better than the last few days. Zachary has been reading books like a madman. He loves the A-Z Mystery series and wants to read every book from that group. He did well on his spelling test and is caught up on his homework. All of this is good news. We are working on a plan that would be a compromise between attending school for the complete day during his chemotherapy weeks, and switching over to hospital homebound which would only provide two hours of instruction each week. This is our idea. The teacher that Zachary has been seeing during the chemo weeks is also the teacher that does the home tutoring. So, instead of having her come out to the house only for two hours each week, we are trying to get permission for Zachary to attend her class for one or two hours each day. This would give him at least 5 hours of instruction each chemo week, from the same teacher that would have been tutoring him. Sounds logical enough on paper….I’m sure some bureaucrat will have a problem with it.
We seem to be lacking in the creative department. I made a simple request on my last journal entry, and to date I have only seen one attempt at adding to the list. If I don’t get my way, I might go back to writing in code…….we all know how much everyone hated that. (If you’re wondering why I seem to be in a cranky mood….read on.)
As if I don’t have enough excitement or hobbies in my life, about 8 months ago I bit the end of my tongue while sleeping. Now, many of you are probably wondering why I would do something as foolish as bite my tongue. Well, I don’t have a good answer to that. Perhaps I hadn’t eaten enough for dinner and was subconsciously hungry. Regardless, I bit my tongue. Well, when it started to heal, I ended up with a raised flap of skin that appeared to be “extra” tongue that just didn’t fall off the whole way after being bitten. About two months later I was at my regularly scheduled dentist visit, so I asked about the possibility of removing the flap. (I had tried biting it off, but the blood and pain were too intense to endure.) The dentist agreed that it appeared to be from the biting incident, and he offered to “clip” it off, but suggested seeing an oral surgeon to get it done correctly. (The whole clipping it off thing didn’t sound like my kind of fun, so I agreed and asked for a surgeon’s name.) Well, 7 months later I finally got tired of having this little “tag” of extra tongue, so I went to the oral surgeon today. He walked into the exam room, listened to my woeful tale of self-mutilation, and quickly set me straight. It was NOT a tag left over from the bite, but instead it was a benign growth that needed to be lased off. (“Lased” is the past tense for “laser”. CAN YOU SMELL WHAT THE DOCTOR IS BURNING?) Well, he assured me that the procedure was quick and relatively painless. (The sales pitch failed to mention that the anesthetic needed to be administered via several needle injections into my tongue.) I asked for a price quote, (for no other reason than to stall for more time) and decided that the anxiety I would experience while waiting for a future appointment to arrive was far greater than the anxiety that was crippling me while sitting there in the chair of death. So, I signed the obligatory waivers, stating that I understood that the doctor could slip with the laser and neuter me, and there would be no recourse, and they got their equipment ready.
The first step was to apply a topical anesthetic that is supposed to ease the pain of the injections. (Yes, that last word was pluralized for a reason.) My theory now is that the topical anesthetic does nothing more than paralyze your legs so you can’t run out of the office at a full sprint. The doctor then said, “Ok, this is going to be the worst part.” Ok, if my legs weren’t without feeling, I’d have been in the next county before he moved a muscle. But, some bizarre part of my brain was saying to me, “Hey, your child endures much worse than this, suck it up and take it like a man!” (If I could have sucker punched the part of my brain that said that, I would have.) So, the doctor proceeded to stick, and restick and restick and restick my tongue with anesthetic. I must have had some bizarre look of panic on my face, because the doctor said, “Calm down and breath through your nose.” (Thank goodness he helped me out with that advice. My mouth was pretty much full of nurse and doctor fingers, I was getting ready to try and breathe through my ears.) Two minutes after using my tongue as a dart board, the doctor then tells me he’s going to “test” the sensitivity of my tongue to make sure it’s numb. By now, my tongue feels like it’s swollen up to the size of a basketball. He stuck it a few times, and lucky for him, I didn’t feel anything. Then, the doctor says, “Ok, this part is bad because of the smell, but you shouldn't feel anything.” (In retrospect, I don't think I was entirely comfortable with the use of the word "shouldn't" in that sentence.) Well, he wasn’t kidding about the smell. You only have your nose to breathe through, and they’re burning your tongue with a laser about 2 inches from your only air supply. Suffice it to say that if burning tongue is toxic, I need to see a pulmonologist now.
The trick to these “benign” growths is getting the root so they don’t grow back. So, now I have a crater burned into the tip of my tongue. Thank goodness I had no intention of entering the French Kissing Olympics next month; it would have been a disaster. Some people get their tongues forked on purpose. These are stupid, stupid people. My little indentation will heal over and grow back as normal, but for now, I’ve got a super-sensitive little burnt crater in my tongue. Cold and hot foods have been quite the adventure this afternoon. I do have the assurance of the doctor’s office that I won’t have to wait more than 2 or 3 years for pathology results. (7-10 days in dog years.) This is my payback for the Buddy debacle. (If you believe in those sorts of things.)
For those few of you that were fortunate enough to call me in the immediate hours after the procedure, you were treated with my numb tongue cell phone voice. (I contemplated typing the whole entry in that “voice,” but it would have been too unintelligible.
Scott
Thursday, September 4, 2003 7:52 AM CDT
Week #2 of chemotherapy during the school year is proving to be more challenging than the previous one. Zachary is definitely feeling the effects more, and he is experiencing fatigue that is seriously affecting his demeanor. I guess we could take one of two roads at this point. Seeing as it is only the second week of this routine, we could push him a little harder and see if over time he adjusts to the schedule. Or, we could make the adjustment now and let him go onto duel enrollment. That would allow him to attend his regular class during the two weeks that he is off of chemo, and then he would be doing homebound schooling during the chemo weeks. The reason we had tried to avoid that setup is that our county only provides 2 hours of homebound education each week. We are very lucky that Zachary’s teachers are extremely committed to helping him get through all of this. Rebecca is going to speak with them today to see if we can make the homebound system work without having Zachary fall behind the rest of his class to a point where he would not be able to catch up. (I don’t know what I’d do with myself if everything just worked out smoothly for once……I guess it would make for boring journal entries.)
I'm sure it will work out. Now onto bigger and better things....
I was out shopping the other night when I ran into an old friend who was with someone I had never met. The friend asked how Zachary was doing, so I gave them a quick update that included the obvious comment, “He is still doing chemotherapy one week out of every three.” Well, the friend of the friend asked a question at that point that caught me off guard. They said, “Why is he getting chemotherapy?” Well, hmmmmmm. I guess the obvious answer would have been, “He has cancer.” But you guys know me. I used the 1.87352 seconds that followed their question to figure out all of the OTHER reasons you might give your child chemotherapy. So, in the spirit of our Cancer Christmas Songs that we all worked on last December, it is now time to come up with….(drum roll please)
TOP REASONS YOU’D GIVE YOUR CHILD CHEMO….OTHER THAN FOR TREATING CANCER.
Now, I know how shy some of you can be, so I’ve decided to get the ball rolling with the some of the thoughts that popped into my mind during those precious 1.87352 seconds that I was given…….and here they are:
1). Our son has a bizarre aversion to barber shops and scissors….the chemo allows us to remove his hair without subjecting him to those tortures.
2). Our country is smack dab in the middle of an epidemic with overweight children. What better way to control their weight than to administer chemo once in awhile, thus insuring diarrhea and vomiting will ensue to help shed those unwanted pounds?
3). Kids these days have WAY too much energy. Getting them to go to sleep on time can be a major battle. Chemo gives you the bonus effect of sucking the energy right out of your child, thus allowing you to get them to bed on time.
4). We live in a materialistic society. Way too many people are putting too much of an emphasis on income and possessions. Chemo treatments are an easy way to help keep your finances at rock bottom. Between co-pays and unexpected expenses from surprise hospital visits, you won’t have ANY extra cash lying around to spend on frivolous items like food, clothing and home repairs.
Ok, that should be enough. Now it’s your turn. Let’s see some creative new reasons why we give our children chemotherapy. I’m not promising a prize for the best ones, but you never know.
Scott
Monday, September 1, 2003 8:13 PM CDT
I’m beginning to think that at some point during all of Zachary’s extensive medical treatments, he was experimented on by some evil mad scientist physician that was dabbling in the whole “Dr. Jekyll & Mr. Hyde” thing. Zachary has exhibited some mood swings lately that are rapid enough to snap your neck if you’re not paying attention. Today, he had been wanting to go bowling all day. Early in the day he and Rebecca were cleaning out his room, getting rid of old things that will be sold at a garage sale later in the week or given away. In the afternoon I had to go to work for a little bit to help load our truck for tomorrow’s sales run. So, bowling had to wait until 4pm. Zachary had been begging all day to go, and when we got there, what does he do? He starts with his “I should be getting a score of 300 every game” attitude. I really cannot fathom why he is so competitive. I know that I can be somewhat competitive, but this is overkill. He started by trying some off the wall wicked curve. (He has been taught to throw a straight ball, which he does without bumpers very well.) Well, after about 4 frames his score was like 20….not very good. He was trying to curve the ball and it kept flying into the gutter. I tried working with him and telling him that if he would just go back to what his coach had taught him, he would do well. He fought me so badly, I was ready to pack it in and leave. Then, in the middle of the second game…..he turned off the attitude like it was a switch and got all affectionate and loving and was back to the good old Zachary. I thought maybe I had an aneurism or something……or maybe I was on Candid Camera…..anyways, he was fine after that. The big surprise of the day came during the third game. I have been trying to learn how to curve the bowling ball. It has not been going well. Today I finally gave up and went back to throwing the straight ball. After about 4 frames in the second game, I had that back under control. My third game I bowled a 176! That is my new high score. Zachary was very excited. We got a printout to “prove” I had done it. Bo, the challenge is back in your court.
This week is a chemo week again, so we will be walking our favorite tightrope as we balance our “normal” lives with our “abnormal” lives.
Scott
Sunday, August 31, 2003 1:25 PM CDT
The seventh day is a day of rest. Actually, we have been making up for lost sleep over the past four days. Now that we have our “normal” lives back, I’m having a difficult time figuring out what possessed us to get a dog in the first place. (Temporary insanity is my guess.) I’m thinking it would be easier on us to forget the whole incident if Zachary hadn’t framed the leash, collar and id tag in a shadow box for his wall. Oh well, on to bigger and better things.
Tomorrow is the holiday, (in case you live in a closet and don’t read the papers,) so we will not be starting chemotherapy until Tuesday. This means that on Saturday of next week, Zachary and I will be traveling to the hospital to do the last day of treatment. Other than that, all’s quiet on the southeastern front.
Scott
Wednesday, August 27, 2003 8:08 PM CDT
WOW! What a night! There is so much to write about, I don’t know where to begin. Perhaps I should start with the “night from hell” that we endured. Nah. Maybe I should jump right into the story of Zachary’s emergency room visit today. Nah again. I could explain how we are no longer dog owners….that’s a good story too. Nah. I’ll start with something else. You’ll just have to endure my ramblings to get to the juicy stuff.
First things first. I am proud to announce that I have started a book. Several of you have commented that I should be writing, so I have decided to dive in head first. My first book already has a title, “How to Break Your Child’s Heart by Getting a Dog and Then Taking it Away, in Three Easy Lessons.” I know it’s a bit wordy, but it DOES get the point across. Without giving too much away, here are some highlights.
First, you need a bit of luck. Our luck came in the form of an offer from a friend to give us a puppy. This of course planted the “dog” seed into Zachary’s fragile mind. Once you’ve got the seed planted. You nurture it by having open family discussions about whether or not you should get a dog, and what kind might do well. You also need to talk about responsibility and all of the chores that will be added to the family’s lives. After you’ve got all of that firmly embedded into your child’s thoughts, you go out and actually GET a dog. Either from a friend, a stranger, or the dog pound like we did. (The dog pound works best for heart breaking, you get to add the emotional game of “We’re rescuing an animal that might have died,” to the mix. After you’ve selected your dog, there is the added bonus of spending lots of money on supplies. These things just don’t feed themselves you know. Now, by this point you have worked your child into an emotional frenzy, pretty much guaranteeing that if anything EVER happens to the pet, you’ve damaged your child for life. Once you get a few days of good child/pet bonding under your belt, you pull the rug out from underneath your child, effectively ripping at the heartstrings for all of eternity, by getting rid of the dog. So, there you have it, the basics on how to disappoint and destroy the dreams of your child. Now you’ll HAVE to buy the book to see what other goodies I might throw in.
OK. Wasn’t it my entry from yesterday that ended with me making the dumbest comment of all time, “How much worse could it get?” Yeah…..that was me. Well, let’s begin with the night from hell. Once again (I think like 8 times) I spoke with the dog trainer that came highly recommended about some of the problems we were experiencing. The “not sleeping at night” had made its way to the top of our list. Four days of little or no sleep can do that to you. Well, he explained that dogs are pack animals that need to see and smell the family to feel secure. He suggested getting a second crate for the bedroom for nighttime, that way Buddy would be able to see and smell us if he awoke and got lonely. (At this point, I started to see the writing on the wall, or the urine in the crate, or the poop on the floor…you choose. So, I decided to move the crate into the bedroom at night, to avoid buying a second one just yet.) So, 9pm came around, we were all in our bedroom, Rebecca on the computer, Zachary and I watching the World Series of Poker, and Buddy howling and barking away, a mere 5 feet away from us in plain view. Nothing we said to him would console him. He was obviously not a crate dog. We never did get to test the theory about him waking up and looking or smelling for us, that would have required him actually SLEEPING AT ALL. Of course, all of this had to happen on the one night before my weekly long travel day driving our company truck. So, suffice it to say, by 4am, I had slid his crate back out into the dining room area so I could try to get 1 hour of sleep. Rebecca was kind enough to take her turn on the couch. (This had worked for me the night before……it calmed Buddy down enough for me to sleep for about an hour that day.) By this point, I was so tired I couldn’t think straight. When the alarm went off, I unconsciously turned it off and somehow woke up. Today pretty much sucked for a variety of reasons, the least of which was my cell phone. Of course, Nextel has recently rolled out their national two-way radio plan, so everyone is trying it out, and the towers are WAY over crowded. I was having an impossible time communicating via radio or cell phone all day. Rebecca and I had agreed at 4am that Buddy was going back today. We were just unsure as to how we were going to break the news to Zachary. (Zachary had stayed home today because of the nausea and vomiting yesterday.) By 11am, Rebecca had called the dog pound where we got Buddy and asked about bringing him back. They tried talking her down off of the tower by putting the trainer on the phone. (He goes there occasionally to help check dogs out.) The trainer tried assuring Rebecca with comments like, “This should only last for a month or two.” Hmmmmmm Not the most inspiring of thoughts. I mean, I’d like to think I’m not a quitter, but no sleep, poop and pee in the house, what’s a guy supposed to do? We had followed all of his directions to the letter, and things were just getting worse. On top of that, he had suggested walking Buddy every half hour or hour during the day to try and reinforce the whole peeing and pooping outside thing. Well, that was a great concept, except for the fact the Rebecca and Zachary can’t handle him well when he fights to be re-crated, which puts me in an awkward position. I can’t be at work, on the road, and here all at the same time. Well, about 15 minutes after Rebecca’s conversation with the trainer, Zachary decided to walk Buddy to try and get him to pee. Evidently, they were walking along the edge of our lawn when Buddy reversed directions on Zachary quickly and got him wrapped up in the leash. Zachary fell over and hit his face (nose/cheek/forehead) on the pavement. (This is where the hospital visit came in.) Somehow, through his bleeding nose, the pain, the screaming and the wailing, Zachary managed to not only hold onto the leash, but he worked his way back to the front door. At this point, Rebecca had already bolted for the door, having heard the screams and assumed the worse, (Buddy has escaped.) The door flew open and Zachary was covered with blood from his nose. Rebecca got Buddy back into his cage and started treating the wounds. Twenty minutes and a few phone calls later, the bleeding had stopped and the two of them were on their way to the emergency room. (As instructed by the Oncologist’s office.) They did x-rays and thankfully, there were no breaks. They treated it as a head injury and released them after a few hours of fun and games. (Oh yeah, they checked his counts and they are fine.) He has some road rash on his cheek, nose and forehead to remind him of the trauma, and I’d swear his nose is crooked now, but don’t take my word, I’m so tired right now, I can’t see straight. Interestingly enough, the instructions from the hospital included a section that read, "Watch for vomiting." Hmmmm. Vomit from a chemo patient that also has a stomach flu and was vomiting the day before. (They're not the shiniest coins in the fountain...are they?) After getting the call from Rebecca, (and trying to decipher what was going on through the horrible connection) I was very much committed to ending this dog’s relationship with us. Zachary had already told Rebecca he would NOT walk the dog ever again. (Big surprise there.) So, it was just a matter of getting him back to the pound. (I really didn’t want to come home exhausted to have to deal with that animal another night, so my partner watched Zachary after the hospital visit and Rebecca took care of Buddy.)
Now, at this point in my journal entry I am asking that anyone under the age of 18 that is reading this please leave the computer and get your parents to read the rest for you. There is nothing x-rated; I just don’t want the ‘wrong’ information accidentally getting back to Zachary. So, that brings us to the third teaser that I gave at the beginning of this entry. Basically there are two versions of what happened to Buddy, the story Zachary got told, and the truth.
Zman’s story – Phyllis, that runs our shop, had a friend that was looking for a dog. She was probably moving away (eliminates the “I want to visit Buddy” request) and she would probably be getting him within a day or so.
The truth – Rebecca took him back to the humane society. His fate is tenuous at best.
I know we screwed up big time with this whole episode. There aren’t enough lines available in these journal entries for me to effectively convey all of the mistakes we made. I guess my solace is derived from the knowledge that we tried everything that the trainer told us to do…..we just couldn’t stay the course. Buddy was not a “crate” dog. He was a family dog that wanted to be with his family. Unfortunately he had never been properly house broken, so we could have slept soundly by letting him out of the cage, but we would have been treating our floor like it was a mine field every morning….looking for the next bomb.
Scott
P.S. Thank you for the advice and encouragement. We did get a size-appropriate crate. We did try the radio thing for 3 days. The trainer we were using used to run the local humane society and now trains dogs full-time.
Tuesday, August 26, 2003 8:18 PM CDT
“Oh how the mighty have fallen.”
Buddy is testing our resolve minute by minute and second by second. We truly want to stay the course and find a way to endure this training period. Honestly, I don’t know if Rebecca and I are going to make it. We have spoken no less than 8 times to the dog expert that we were referred to. He has given us numerous tips and ideas on how to curtail the assorted Buddyisms that are popping up all too often.
I know that patience is a virtue…..well, when have I EVER claimed to be virtuous? Now, having a new pet that is proving to be difficult can place added stress on a family. Had we been thinking clearly last week, we would have given this more thought. To make things more, Zachary got sick today. He started throwing up before dinner and lost about 119 gallons of vomit in two sessions. Ok, maybe I exaggerated somewhat there, buy when you’re standing over the toilet behind your child trying desperately not to join in the gag fest, objects in the bowl may appear larger than they actually are. So, here we are, with a dog that won’t stop whining and scratching at his cage, trying to sooth our sick son, trying to figure out how we’re going to get any sleep tonight, and trying to figure out how I’m going to function on the road tomorrow. Of course Wednesday’s are my long day on the road….driving from Jensen down to Ft. Lauderdale and then working my way back all day……all-in-all, 12 hours with lots of driving.
(I can hear the violins playing now…….) I know we brought this misery upon ourselves. The ever-logical Scott, leading with his heart and trying to be spontaneous……had it backfire on him!
Well, I guess we made our bed so now we’ll just have to lay in it. I don’t know how much more of this we can deal with. Tensions are high, nerves are shot, and on top of that, Buddy peed on his crate mat today, ruining it. So there you have it. Go ahead, laugh at our misery and make fun of our stupidity…..we won’t take it personally. How much worse can get it right? (I didn’t just type those words….did I? I must have a brain dysfunction or something.)
Scott
Sunday, August 24, 2003 3:06 PM CDT
Buddy joined our wonderful clean orderly household at 4:30pm EST on Friday, August 22, 2003. We were able to watch him very closely and only had one near miss where he attempted to mark his territory by peeing on a chair. Luckily we were able to get him outside and avoid a major pee incident. (I can see where marking a chair by a dog is an important thing to do, seriously, chairs can be so combative with dogs for territorial rights….you’ve got to mark them or they’ll just take over. Anyways, we got past that on Friday and moved into Saturday where we walked him many, many, many times. I pretty much have been on a mission to get this dog to poop. OUTSIDE! So, much to my dismay, he never pooped yesterday. Ok, I’m a rational kind of guy, or at least I’d like to think so. So, when my friend and business partner was riding bikes with his children yesterday evening and came by, I maybe got a little caught up in his comments when he said, “Hey, maybe you got lucky and found a dog that doesn’t poop.” Ok, this may seem a little bit ridiculous to those of you that know I am a pretty grounded and rational kind of guy, but when you’ve spent the previous 24 hours on poop alert, waiting for a signal or some kind of sign that Buddy is ready to explode, you tend to get “on edge” and become more susceptible to off the wall comments or ideas. Anyways, we made it through most of the night without incident. Then, Buddy gave a whimper from his crate at around 4:00am this morning. Now, had this been a trained, and proven pet, I would have probably rolled over and figured he was having a bad dream or something. But, we are dealing with uncharted waters here. So, I leapt out of bed, threw on some shorts and got him outside………to sniff around and donate about 5 drops of pee to my yard. No poop! BUT, the good news was that now that I had REALLY awakened him fully, he was ready to play and stay up all morning. After another hour of him whimpering from his crate, I finally gave in and got the newspaper and sat out in the family room with him.
Now, you’d figure that any normal animal would have appreciated this sacrifice of sleep and sanity and would have been content. Not our Buddy. He spent the next 2 ½ hours pacing back and forth waiting for Zachary and Rebecca to wake up. Once we were all up, the fun really began. Like I said, we have been watching him carefully; to make sure he doesn’t have an accident. And, while I was really wanting to believe my friend, I was still on full poop alert, or as we call it, “BROWN ALERT.” The highest level of awareness for imminent poopage. Well, at some point this morning or beloved Buddy found a time window of approximately .000000001 seconds where none of us was actually looking right at him. Rebecca had gone into the bedroom to change, Zachary had turned his head while playing with some toys, and I had gone to the refrigerator to get some orange juice. Seizing the moment, and knowing that we only walk him like 15,000 times a day, Buddy let loose with over 40 hours of pent up brown gold. A nice neat high pile right there between the dining room table and the family room. Looking back, I don’t know whether I’m more shocked that it happened or whether I’m just amazed it took us a few minutes to realize it. The stink alone should have alerted the astronauts on the space station.
Well, I cleaned up the mess, and proceeded to really stress out over how we could possible monitor this dog every single second of the day.
Luckily, we had been given the phone number to a highly recommended dog trainer. He used to run the Humane Society and was excellent with dogs. I had already spoken with him on Thursday after leaving the center, and he had informed me that the next class was starting in a few weeks and he would send me the information. He also said that if we had “any” problems at all, to give him a call. Well, I’m certainly no expert on what constitutes a problem, but a smoldering pile of elephant dung in my dining room DID seem a bit strange for our household. So, I called him. (This is where the learning part comes in.) It turns out that crate training involves more than locking Buddy up at night. To properly crate train a dog, you must have an adequately sized container for the animal, (check), a comfortable open area where the animal can see you, (check), and the resolve to keep him crated ALL DAY, UNLESS YOU ARE WALKING HIM, OR PLAYING WITH HIM…IN WHICH CASE HE REMAINS ON THE LEASH SO HE CAN’T SLIP MORE BOMBS UNDERNEATH THE RADAR…..(no check). Ok, so two out of three wasn’t good enough this time. Do we get points for trying?
So, as much as Buddy fought me while I tried to put him in the crate, he immediately laid down and was peaceful. I took him out an hour later and gave him a good walk, and he went right into his cage without much of a fuss. We waited another two hours, and repeated the cycle, this time playing for a few minutes and making sure he drank some water…once again…very little fuss reentering his crate.
That is where we stand. The trainer said this process may take a few weeks or a few months. Either way, we now have less stress, knowing that dogs are much less likely to mess up their living space, and that he will be spending a lot of time there while he learns not to crap where he lives!
Scott
Saturday, August 23, 2003 9:12 AM CDT
If you venture over to the photo album you will see the newest addition to our family. Buddy! He is 3 years old and is a Pointer mix. We were told at the Humane Society that he weighed 33 lbs. The Vet weighed him and said that he weighs 47. Oh well. He is fully grown, so at least we’re not looking at an 80 or 90lb. dog. He is very gentle and loving. He likes to cuddle and lay with us as we watch TV. Hopefully this trend will continue and he will turn out to be a great addition to our family.
Zachary has always been a little gun shy around larger dogs, but he has taken an instant liking to Buddy, and Buddy adores him too. Rebecca is at work today and tomorrow, so Zachary and I have the whole weekend to get more acquainted with Buddy and to help him get more acclimated to our home.
Scott
Thursday, August 21, 2003 12:48 AM CDT
As the roller coaster of life takes us on a twisting and spinning thrill ride, I find myself looking for the barf bag so I won’t hurl all over the other riders.
Zachary has been doing pretty well with school this week. He has had only 8 trips to the nurse’s office in four days. If only he had made two more, he would have broken the indoor record. We caught on early in the week and realized that he is probably getting frustrated with not being on the same level as the other children in his class so he uses his illness to escape to the nurse’s office. The teacher has been made aware of this and is going to try and get a handle on this little quirk in his character. The other issue that has been upsetting me is the hearing aides. As most of you already know, Zachary has bilateral hearing aides to compensate for the loss of hearing that he incurred from the intensive chemotherapy that he received during his initial protocol. Having discovered girls in the past 3 months, Zachary is MUCH more self-conscience about his appearance. He refuses to been seen without his bandanas, and he tries to take his aides out when we’re not around. I found out that he has been taking them out of his ears whenever he can get away with it at school. This morning I sat him down and once again explained the importance of the aides and how they will not improve the hearing in his legs if they are sitting in his pockets. He told me that the reason he keeps taking them out is that some children have made fun of them. (Evidently he is the only child at the school with hearing aides.) As much as it pains me to know that other kids are targeting him with that kind of abuse, I had to insist that he keep them in all day or start facing punishment. Not only does he need them to have any chance at comprehending the lessons that are being given, but they cost us over $4,000.00, and there is a much better chance of losing them when they keep coming out of his ears. It is very difficult to envision the amount of pressure he must be feeling with being back at school. He has not had normal peer interaction in over a year, so he is dealing with peer pressure that he has never really experienced before. On top of that, he has children making fun of his head and hearing aides. I asked him to tell the teacher if any student makes fun of him. We are very lucky to have a teacher that cares immensely about Zachary and about getting him an education. I would not want to be the student that gets caught making fun of another student in her class.
So, we will surely get through all of this. We knew going in that it would require a lot of tweaking and patience.
Scott
P.S. A good friend of ours called last night and offered us a free lab puppy. We discussed it last night and today and decided that getting a dog would be a good idea for our family. Unfortunately, a lab grows up to be a very large dog. We are going to start checking the local humane society and doing some research into smaller breeds that would be easier to manage in our small house and small lives. If nothing else, I’m sure a dog will provide me with endless journal material in the near future!
Tuesday, August 19, 2003 7:02 AM CDT
Ok, so you’ve read my entry from Monday 8/18/03 and you are able to sense my anger and frustration with this never-ending urine saga. Maybe some of you are even beginning to think that I’m a little bit crazy….heck….I always write about fighting the system or trying to change some process that has been used “successfully” for scores of other families…….”Why can’t that Scott guy just conform like everyone else?” “Wasn’t it last year that he made the hospital change the isotope that they were using for their MIBG scan because he found a more effective one was being used in other parts of the country?” Yep….that was me! And it looks like I have (in the immortal words of Brittany Spears) “Done it again.”
Here is what has caused the latest hubbub in the ever-logical brain of Scott.
On the report from the lab there is a disclaimer paragraph that reads as follows:
“The VMA to creatinine ratio and HVA to creatinine ratio will be reported whenever the patient is under 18 years, the urine collection is random or other than 24 hours, and the urine volume is less than 400ml/24 hours.”
At first glance it seems to be an innocuous enough statement, right? WRONG. Ok. Let’s take this slowly. (I’ll use small words so you don’t all get lost.) The VMA and HVA ratios are exactly what we are looking for here. They are THE only part of the urine report that matters to us or our situation. So, having them be accurate is everything. The sentence above is written with three criteria as an INCLUSIVE group. You may have noticed the word ‘and’ after the second criteria, between the words, ‘hours’ and ‘the’ near the end. That single word ‘and’ had me interpreting the sentence to mean that our precious ratios will only be reported when all three of the criteria have been met. 1). Under 18 years. 2). Random non-24 hour collection. 3). Volume less than 400ml/24 hr.
Well, let’s see how we did.
1). YES! Zachary is under 18 years. Hallelujah!
2). Ooops. This wasn’t a random collection. In fact the doctor specifically ASKED for a 24 hour collection and pre-called the lab to make sure it would get reported correctly.
3). Double oops. Page one of the report is kind enough to show that we gave them a 740ml sample. Hmmmmmm. They can count to 740, but they can’t determine whether or not that number is higher or lower than 400…….**RED FLAD**, **RED FLAG** The lab can’t count!!!!!!!
So, my first impression was this. Either the whole report is meaningless and useless because the component we are looking for can’t be done by this lab if the sample is random and the volume is over 400ml, OR the verbiage is wrong, and that little word ‘and’ needs to be changed to a smaller word, ‘or’. As luck would have it, I kept the apology letter from the director of lab services at our hospital. That letter included the phone number for the director. So, not being one to be shy, I called the man. After speaking with him for about 2 minutes, I quickly ascertained that he possessed more administrative knowledge than medical knowledge. He may have even said at one point, “Dammit Jim, I’m a pencil pusher….not a doctor.” (You Star Trek fans will love that one.) Anyways, he promised to call the lab and speak with the pathologist that overseas all of this nonsense. Before I let him off of the phone, I did get to say, “You need to ask the lab whether they were too stupid or lazy to change that word from ‘and’ to ‘or’, or whether this entire test is a farce and waste of time.” Later that afternoon he got back to me. Guess what? That word ‘and’ was supposed to be the word ‘or’. They didn’t realize it was incorrect. They are going to change it! So, basically, all HVA and VMA reports have been misleading and confusing for years and none of their geniuses caught it.
I’m quite sure that I’ve aged about 15 years in the past 12 months. I must have been sucked into some sort of time/space continuum.
The urine is supposedly accurate. We will use this one as our baseline and go from there. They are promising that our next report with have the corrected text. These levels are higher than we would like them to be. It is possible that the Protocel is ridding Zachary’s body of the remaining bone lesions and that this is causing the urine to appear higher than normal. Time will tell.
Scott
Monday, August 18, 2003 8:53 AM CDT
You would think that after repeatedly having a bucket of crap thrown in my face when I walk out of the front door in the morning that I would learn to use a different exit. Surely I have not aged so much that I have surpassed my capacity to learn from trial and error. Why then have I allowed, yet again, myself to be sucked into the urine game, (or as I like to refer to it----THE BLACK VORTEX ABYSS OF DEATH) again? Who knows? I guess maybe the unrelenting badgering of the doctors office to repeat the test had something to do with it. Someone famous once said, “Constantly being bothered by someone is like being nibbled to death by a duck!” Well, regardless of my mental shortcomings, or the ethical status of the lab and doctor’s office, we once again have urine numbers to report.
UNIVERSAL URINE REPORT DISCLAIMER
The above referenced report should in no way be used for any purpose other than that which is stated in the ‘urine report purpose manual’ which can be found in any sewer or garbage dumpster of most major cities. Please make sure you cross check your results with an equally incompetent lab or reporting agency so that your level of aggravation remains at its peak. Per section B-12.9983 of the Universal Urine Report Disclaimer all patients wishing to have accurate information on their lab results should routinely play their state lottery, thus allowing them a much greater chance of winning millions of dollars so they can buy or build their own lab and get the results done correctly. (Purchasing of an existing lab does not guarantee results, results may vary with stupidity.)
This is ONCE again our first report from this particular lab; so ONCE again keep in mind that these are reference numbers to be compared against in the future. They are not to be taken too seriously!!!!!!!!!!!!!!!!!!!!!!!
VMA = 11.1
HVA = 26.8
VMA normal range = 0 – 9
HVA normal range = 0 – 15
Ok, there it is. It’s all out on the table now. These results are most effectively understood if you first soak them thoroughly in gasoline or kerosene and then toss them into a raging fire.
Scott
Friday, August 15, 2003 8:55 PM CDT
***ATTENTION ALL MSN MESSENGER USERS***
ZACHARY NOW HAS HIS OWN INSTANT MESSENGER ACCOUNT. HIS EMAIL IS: ZMAN6668@HOTMAIL.COM
PLEASE ADD HIM TO YOUR LIST OF BUDDIES.
Week #1 is now firmly under our belts. Zachary managed to survive the combination of chemotherapy and schoolwork, coming out of it relatively unscathed. He took his first test today, a spelling test, and got an A. Once again he slept the whole way down to the doctor’s office, slept for most of chemotherapy, and then slept the whole way home. He has asked us a few times this week if we could stop the chemotherapy altogether. It is difficult explaining that the cancer is still there, in his bones….lurking. I try to give him some hope of a future without chemotherapy, but with the future being so uncertain, I try not to promise what I can’t deliver. We talk about the cancer being gone and how it would be great to quit the chemotherapy, but we don’t put any time frame on that happening. He seems to be growing up so quickly. The one downside to that is that he questions things more than ever, and unfortunately most of what is on his mind relates to the big unknown, CANCER.
Tomorrow Zachary and I plan to go bowling in the morning. Then he has his last week of league bowling after lunch. After that we have the Connor Moran bowling outing down in Jupiter. It will be a bowling day I guess.
Scott
Wednesday, August 13, 2003 8:07 PM CDT
Day 3 of school went ok. I am seeing the whole school experience as a work in progress. With chemotherapy this week, Zachary has been lasting about 2 hours in the morning with the tutor before getting fatigued. At that point she and Rebecca switched gears and had him coloring or working on the computer. It will invariably take some time for him to get used to the longer hours. We are very lucky that we started him on an earlier bedtime schedule several weeks ago. He now asks to go to bed early and wakes up easily, without a fight. Next week will be interesting when he rejoins his regular class and is scheduled to stay for the whole day. I’ll be crossing fingers and toes that he is able to communicate well with the teacher and not shut down if he gets tired or frustrated. We’re hoping that the extra stimulation of interaction with the larger group will help to keep him attentive and interested.
Yesterday my Jewish Princess (wanna be) wife came home and informed me that her car was showing a warning light on the dashboard that indicated there was a problem with the ABS (Anti-lock Brake System.) With her driving back and forth to WPB for chemotherapy everyday, I agreed to have it checked out today while I was on the road in my work van. She was able to use my car for the day. The call came to me from the mechanic at around 2pm. Both ABS sensors needed to be replaced. Cost….$500.00. I spoil that woman. I mean seriously folks…..do you REALLY need the anti-lock brake system? It only rains every day down here for a couple of hours this time of year….so avoid the REALLY wet spots on the road and get on with your life. Come on……what kind of world do we live in where people won’t even live on the wild side once in a while and take some chances……..who really needs that extra protection anyways? Oh well…. I gave in and told the mechanic to fix her car. Humph………what’s a guy supposed to do?
Scott
Tuesday, August 12, 2003 6:57 AM CDT
BACK TO SCHOOL.
The first day was a success! Sure, there were a few bumps in the road, but it all got worked out and everyone came out of it relatively unscathed. Zachary’s only complaint was about another boy that made fun of his bandana and general appearance. Zachary’s teacher must have overheard, because she made a general announcement to the class that picking on other children was not going to be permitted. The boy then came up to Zachary and apologized.
This morning provided a mild surprise for me. I was sure that after getting chemotherapy yesterday, Zachary would NOT want to get up early for school. We have been “conditioning” him over the past five weeks by having him go to bed early so it wouldn’t be a shock to his system….that strategy appears to have paid off! His alarm went off at 6:45am; he was out watching TV, playing, and picking out a breakfast by 6:50am. He doesn’t need to be at school until 7:50am, but he was more than ready by 7:20am. I thought for sure we would be fighting “dragass” syndrome all morning, but he was up and raring to go! Hopefully this will be the trend and not the exception for the rest of the week.
After he went to bed last night, Rebecca was out in the kitchen and heard noises from his room. She walked over and found him out of bed on his knees praying to God about school. She couldn’t hear what he was saying, and when he “caught” her standing there, he refused to reveal his prayer under the ever popular “If I tell you what I said it won’t come true” defense. This of course has gained most of it’s recognition from birthday candles and wishing wells over the years, so I guess it’s no surprise to find a nine-year old using it when referring to prayers. Hopefully he was praying for positive experiences with his class, and not some bizarre scheme that will get him out of attending. I have been trying to use extra positive reinforcement with him, telling how proud I am that he is attending school again and that he is waking up without a fight and generally making the effort. Of course this is only day 2, so it remains to be seen whether or not the “wheels will be coming off our bus” or not.
I got an interesting “present” from Rebecca when she returned from the doctor’s office yesterday, a copy of the apology letter from the director of lab services that was written to our doctor. Because the letter was written to our doctor and NOT to me, I will refrain from providing the entire text in this journal entry. However, I see no impropriety in relaying to all of you the general gist of the letter. Basically the director was apologizing for the erroneous reports that have been given to us regarding Zachary’s urine. He explained where their system had a flaw that has now been addressed, and he asked that the doctor forward his apologies to “the family.” (That would be us.) I’ll try not to obsess too long about how many families have been affected by their ineptitude over the past 6 months or year, it will just give me ulcers. (I need another medical ailment like I need bowling balls bouncing off of my ankles.) Anyways, we got the letter, they got more urine to test, everyone is happy.
Scott
Sunday, August 10, 2003 8:36 PM CDT
Tomorrow is the big day. Zachary will be going back to school. For those of you that have slept through my journal entries over the past year or so, Zachary has not been able to attend a full year of school since kindergarten. He was diagnosed in March of that first year. He returned for the last month of first grade. He was able to start second grade and stayed there until February of last year when he relapsed, and all of third grade was done through hospital homebound. So, here we are. Pins and needles are the order of the day as all three of us contemplate various scenarios involving school that may or may not be thrust upon us.
As I was tucking Zachary in tonight, I told him how proud I am of him for the work he has done that has enabled him to return to school with his friends. He is teetering between being nervous and excited. In the morning we are taking him in early at his teacher’s request so that we can have a small chat about what is in store for him. But, I am getting ahead of myself. I haven’t even relayed the story of our meeting on Friday that centered on getting Zachary back into school.
Well, without naming names, I will say this. Our school district contracts with the county health department to provide school nurses. Schools do not have nurses every day. The nurses float between schools and cover as many as 10 – 12. The nurse that covers our school had spoken with our child-life specialist earlier in the week and had expressed some “county” concerns about Zachary attending school during the weeks while he was accessed for chemotherapy with a needle in his port. I never really got the exact concern, but the gist of it was they were “looking out for the health and welfare of the other students that would be put at risk.” Ok, I’m a little slow. Are they worried Zachary would rip out his needle and chase students around the school? Or maybe he would extract some blood from his line somehow and threaten to splatter it? I don’t really know. But I will say this. My impression was they were playing a very serious game of CYA or (Cover Your Ass.) They also said that if Zachary was going to attend the four days that he would be accessed in the morning, the county would require a nurse to be with him at all times. Their other brilliant idea was to have Zachary get deaccessed and accessed everyday for chemotherapy. (The lenghts of their stupidity are boundless.) Hmmmmm. Now I know where all of those lost education dollars went to. The counties are throwing around nurses like they are water or something.
So, we get to the meeting and we’ve got all of the players present. The county nurse, the principal, teacher, special Ed teacher, guidance counselor, etc. The nurse made a lame attempt to take charge by stating that Zachary could attend during the weeks he was NOT doing chemotherapy, but that he would be doing hospital homebound during the other week. We immediately corrected her and said we wanted to have him attend during those weeks as well. We also stated that we were interested in pursuing a setting that would have him in a smaller sized classroom for those four days. The tutor that Zachary had last year teaches small groups of 6 – 12 children during the day. She already knows and works very well with Zachary, so we figured it was perfect. The nurse thought otherwise. She started quoting the county doctor who had said that a nurse must be present if Zachary was to attend during those four days. At that point, Rebecca offered herself as a substitute to a nurse, stating that she was happy to be there in the class with Zachary with the special Ed teacher. The principal was also very much onboard with this idea. He also let the nurse know that Zachary was protected under federal law that requires the school to make every effort to provide an education for all children that want one. After an hour of back and forth banter that appeared to be nothing more than posturing, everyone agreed that we would start this coming week with Rebecca in the class Tuesday through Friday unless we heard otherwise about the county providing a nurse at their expense.
During the last three and a half years Zachary’s school has stepped up to the plate for us on numerous occasions. Once again they have stood by us and shown us that they genuinely care about our son and his education. Everyone from the school at that meeting made us feel like they were on our “side” and that had Rebecca and I been absent, Zachary’s interests would still have been represented. We have spoken with some of our friends about their experiences with trying to get their cancer child back into school, and the common theme we’ve heard is one of battling and attitude. Aside from our disagreement with the county nurse, the school was 100% behind our decision to have Zachary back in school.
There is one other person that I would like to give a special thank you to, Barbara Abernathy from the P.O.S.T. team. She has shown us over and over again that she will be there for us and fight the battles that we need her to fight. She mixes knowledge, passion, style, and finesse which she brings to the table in a unique way that wins over adversaries and accomplishes the “impossible.”
So, Zachary is tucked safely away in bed, and Rebecca and I are left to obsess over how things will go this week, next week, next month…..etc.
Scott
P.S. It’s nice to be worrying about something different for a change. The cancer concerns haven’t left the stove, but they have been placed on a back burner where they will hopefully cool down…..forever!
Friday, August 8, 2003 8:49 PM CDT
Number 1, making water, urine, pee, piddle, tinkle, piss, the yellow river, (you get the idea, right?) Well, now that I’ve got your attention we’ll get right down to business. I contemplated giving a long boring lecture about the intricacies of urine testing along with details that would bore a rock, but instead I will only give the highlights.
As you may or may not know, we have had numerous problems with getting accurate urine data from the hospital and lab. Evidently we’ve been getting false or skewed information for about six months now. The lab that does the testing for St. Mary’s hospital has been assuring our doctor’s office that they have everything under control. Sadly, this has not been true. They have two labs that process urine for this particular test, one in California that tests the urine when it is a 24 hour collection and one in Atlanta that tests it when it is a random or single sample. Now, why on God’s green Earth they need to have two labs SOOOOOOOOOOO far apart testing urine will surely remain one of mankind’s greatest mysteries. I sleep fairly soundly with the knowledge that I will never have the answer to that question. What I do know is that over the past 7 months, the lab company and or the hospital have screwed up and sent Zachary’s urine samples to the wrong lab on more than one occasion. This is why I told the doctors office that we would no longer being doing urine samples. I was sick and tired of playing the waiting game, only to then get results that would eventually be found out to be useless. After many weeks of begging (not literally, but close to it) I finally gave in and let them have their precious urine sample. That was the one we got results on 3 weeks ago. That was the one that had us all excited. That was the one that I forwarded to NYC to their opinion on. That was the one that NYC informed us was reported using the wrong format, one that is “useless” for neuroblastoma. That was the one that put me over the edge. I spoke with the doctor’s office at length about my displeasure with this whole urine reporting issue. I must have struck a cord with them, because I have now been told that I will be receiving an apology letter from the lab and hospital. (Wow, big deal…..that makes everything warm and fuzzy) [It helps to read that last sentence with a lot of sarcasm in your voice.] Anyways, after many calls to the lab, our nurse at the doctor’s office was able to find out that they have changed their testing method and that now, they use a method on random samples that is useless for neuroblastoma. Why? Why in the world do they bother to test the urine if they know going in that the results they are giving are of no use to the families that are waiting for them? I guess THAT will remain one of life’s little mysteries as well. So, the bottom line is we are now taking a 24 hour sample to turn in on Monday at the start of chemotherapy.
On one hand I am anxious to see what the results will be. On the other hand, I wouldn’t be entirely disappointed to find out they got the urine to the lab and somehow slipped while opening it and all took a shower in it. Either way, I’m good!
Today was our meeting with the school about getting Zachary back in with his class. I promise I will write about THAT meeting this weekend. The fun never ends!
Scott
Monday, August 4, 2003 6:58 PM CDT
Ahhhhh another weekend under our belts. Well, we did Zachary’s bowling league on Saturday. That would have been better but Zachary has a tendency to get frustrated if he doesn’t bowl a 300 every game. (I’m sure when he grows up and starts getting therapy every week he’ll find a way to blame Rebecca and me for instilling some sort of perfectionism into his psyche when he was a child.) Oh well, he’ll get over it. Saturday night Zachary wanted to do the blazer bowling thing, so we called our friends the Weekmans to see what they were doing. Lars and Sarah wanted to bowl, so we reserved a lane. When it came time to go, Rebecca decided she would rather go to the craft shop and then relax, so Zachary and I went to meet our friends. When we got there, Eric had decided to stay home and nurse a sore hip, so it was just Jennifer, Lars, Sarah, Zachary and I. Now, I hadn’t done anything physical in almost three weeks, (still nursing my possible muscle pull/cracked rib.) So, I was a little bit nervous about re-injuring myself. The first game went well, and then during the second game, I hurt myself in quite possibly the dumbest way EVER someone has been hurt while bowling. Now, to fully appreciate this story you have to visualize me as a right-handed bowler, taking my four steps that end with my left foot forward and my right arm releasing the ball. (Everything is looking good in your mind right now, give it a second....it’ll get worse.) Ok, so here I am in the middle of my game, taking my four steps up to the line, swinging the ball forward in a nice arc, and WHAM, the ball deflects off of the right side of my LEFT foot. Now, many of you are raising one eyebrow and wondering if I just had a typo or something. Surely it is physically impossible to hit your LEFT ankle while throwing a ball with your right arm. I mean, some of us have glanced a ball off of our right leg while miss-stepping on our approach, but how do you hit your LEFT ankle when it is supposed to be out in front of you to the left as you release? Not only did I WHACK my left ankle, the impact caused the ball to shoot immediately to the right (thank goodness the kids had the bumpers up....it would have been a gutter ball) bouncing resoundingly off of the rail like a pinball working it’s way down the lane. The impact was so severe, that it started to turn black and blue and actually was bleeding. A round ball cut me???? How is that possible?
Ok, I’ve thought this through pretty thoroughly and I’ve come to the conclusion that many of you don’t bowl and won’t fully appreciate the stupidity of my actions. To assist you lost souls in better seeing the magnitude of my ineptness, I will now include some analogies from other sports to help with explaining the story. My blunder was the equivalent of a basketball player going up for the slam dunk, only to crack his head open on the rim because he misjudged his approach, or the baseball pitcher that allows the ball to slip from his hand as he is delivering a fastball, only to have it go straight up in the air before falling on his head, or the golfer that drives a ball into a tree, only to have it rebound right back to smack him between his legs, or the snow skier that jumps a mogul and tries to do a small camel kick (ski backs slap your butt) only to misjudge his height and have his ski tips catch, causing him to do a fly-swatter (ski tips buried in snow, body and face thrown forward and down into snow at an alarming rate.), or a football player that is waving to the crowd while running through the end zone after scoring, only to collide with an unforgiving goal post. Well, I think you get the picture.
I am quite confident that had there been a video camera recording me, the tape would have ended up in the hands of America’s Funniest Home Videos and many people across the country watching the show would have been yelling to family members that were out of the room, “Honey, you’ve got to come in here and see this. You’re not going to believe what this idiot did while bowling!”
Scott
Friday, August 1, 2003 5:09 PM CDT
Has it really been since Sunday that I’ve updated the page? WOW.....I must be really lazy or really busy. Well, anyways, once again the old ‘No news is good news’ adage will be in effect this week. I HAVE been busy with work and other than that there is not a whole lot to report. Zachary remains to feel great. He has bowling league tomorrow and a birthday party to attend at the beach after that. We really don’t have anything too exciting planned for the weekend, so we’ll see what pops up for me to report over the next few days.
We are planning a trip to Pittsburgh in late September. I still have a brother, sister-in-law, niece, nephew and 98 year old grandmother that live there, so that will be exciting. There is an annual Protocel gathering that takes place just outside of Pittsburgh every year that we plan on attending too. Evidently several hundred folks from around the country make the trip to meet, compare stories and have a pleasant afternoon of food and relaxation. It will of course be our first of hopefully many trips to celebrate in the wonders of Protocel. We are also trying to put together an outing to watch a preseason hockey game. Mario Lemieux just announced that he WILL be playing at least one more season, so Zachary is excited that we may get to see him play again.
Scott
Sunday, July 27, 2003 3:40 PM CDT
Weekends, weekends, weekends. We’re always working towards those wonderful weekends. Mondays we’re thinking about how long of a week we have ahead of us. Tuesdays we’re glad to have Monday behind us but we still see three long days ahead of us. Wednesdays we are starting to see the light at the end of the tunnel. Thursdays the end is near and we start to get that “good” feeling that the weekend will be great. And then Friday we can taste it. Even the British have a saying about the approaching weekend. If someone is daydreaming on Friday or working to get out early, they say they’ve got “P.O.E.T.S” disease. Piss Off Early Tomorrows Saturday.
Yesterday Zachary had his bowling league. He is doing really well. I think there are only three weeks left, but he has learned so much that I believe it will remain to be one of his favorite hobby/sports. Yesterday afternoon we drove down to WPB and met up with the Charlton kids and the Mathis’s. We took the kids for more bowling. Because of the little ones, we had the bumpers up. Amazingly, Zachary is able to keep the ball in the middle and NOT use the bumpers. He scored a personal best 129 without relying on the bumpers. Zachary’s friend Mitchell bowled a great game as well. Even though he relies on the bumpers a little bit, his 155 was a fantastic score. He had 40 after 5 frames, and then he proceeded to get a “four bagger”, four strikes in a row, followed by a spare in the tenth frame. They all had a blast. It is really great to see these kids that have endured so much out there enjoying normal activities and not having to think about the cancer. Weekends are great.
I had an interesting phone call on Friday that I forgot to write about the other day. [Flashback] When we first were preparing to travel to NYC over a year ago for testing, we had a major battle with our insurance company over whether or not they would cover the expenses. After a prolonged battle, we found out that the State of Florida has a law that requires insurance companies to pay for cancer treatments that are not available within the State of Florida. So, after enlightening them, they agreed to pay the NYC hospital at the in-network scale, so the hospital wouldn’t be chasing after us for payment. This system worked until our most recent trip in January. We started receiving bills from that trip about 3 months ago. I have called and called and called and talked until I am blue in the face, and I just can’t seem to get answers as to why they are chasing after us for payment. Finally our friends at the oncology support team solved the puzzle. Apparently our genius insurance company had some sort of internal error, (the person that was using the one brain that they have misplaced it) and they had changed our file so that they were paying NYC at the out of network scale, which is of course much less. So, NYC was asking us for a few thousand dollars to make up the difference. This is where it gets great. Our friends on the support team convinced the insurance company of their mistake and got them to agree to fix it.....almost. Evidently they refused to fix the mistake by resubmitting the bills for complete payment unless....(drum roll please)....they heard directly from me and got my permission to reprocess the bills. Hmmmmmmmmm
Lets see......WOW this so difficult.....what do I do? I’m not used to facing these sort of life changing decisions.......do I: A) Give them permission to reprocess the bills, thus correcting the situation and relieving us of thousands of dollars in bills, or B). Refuse to allow them to reprocess the bills and find some way to come up with the money ourselves. Decisions, decisions.......the pressure is too intense......how do I decide?
Well, I guess I’ve got to weigh the choices carefully and come up with some sort of plan. First I’ll have to figure out if I even COULD come up with that kind of money....I guess I could sell something.....lets see.........BODY PARTS! That’s it! Why didn’t I think of that a long time ago.....I mean seriously.....there are lots of body parts that we have two of......isn’t that overkill? Two eyes....do I really need two? How about kidneys......how often to I use both? Surely there is a market out there for 40 year old body parts.......Jiminy Cricket...I must have like 10 or 15 teeth.....is there a market for them? Hair won’t help me......unless back hair is in demand........but fingers......well, I’ve been using the middle ones quite a bit lately...but the little ones seem superfluous. I’ll have to give this all some serious thought....maybe the smart thing to do would be to push the 11 numbers on the phone and say the few words they are waiting to hear....”GO AHEAD AND PAY THE BILLS YOU MORONS!”
Scott
Friday, July 25, 2003 5:57 PM CDT
Bear with me folks, I just had dinner and for no particular reason, I had a wine cooler with dinner. Now, for those of you that don’t know me that well, you are probably thinking, “What’s the big deal? What kind of light-weight drinks one wine cooler and feels the affects of the alcohol.” Well, I have a low tolerance to alcohol, which is why I only have a drink like 3 times a year. (Any spelling errors will be attributed to the booze.)
Medical News:
One of our local oncologists was nice enough to send copies of our most recent tests to NYC so that the doctor there could evaluate them and weigh in with his opinion. He had even emailed two weeks ago that he was anxious to see the results. Well, he emailed back to our doctor today with a confusing response. He wrote, “Yes. I saw the reports – no evidence of disease in the bone marrow, but MIBG still positive. What is your question? Opinion about what to do next?”
WHAT??? WHAT??? WHAT???
What kind of drugs is this man on? He spends 7 months telling us our son has too much disease (specifically bone marrow) to be eligible for their treatment. He sends us home to try various chemotherapy regimes to try and get improvement (that we never DO get,) and he tells us repeatedly that the chemotherapy we’re on will NOT get rid of disease, it will merely maintain current levels for a limited amount of time.
So, WHAT IN THE WORLD IS HE THINKING? We get our first clean bone marrow EVER!!!!!!!!!!!! And his response is “What is the question?” I just don’t get it. How about, “Boy, these results look very encouraging, we’d love to know how you got this improvement.” Not being one to sit back and take things without a battle, I took it upon myself to email the NYC doctor and ask what he thought of the results. He hadn’t mentioned the urine numbers in his email to our doctor. This is what he wrote back:
“We have seen this kind of response with Irinotecan. Very wonderful, especially considering the lack of toxicity. I do have the urine results but the VMA and HVA were not measured in a meaningful way for neuroblastoma. The results are reported in “mg/24hrs”, whereas for neuroblastoma the results should be reported as “mcg/mg creatinine.”
Ok, take a deep breath. Don’t panic. I haven’t threatened to kill anyone.......yet. God help the person or persons that processed Zachary’s most recent urine or compiled the report that we have been elated over if they were again done incorrectly. This is a completely new way for them to have screwed up. I’ve never heard of the different reporting methods and I can’t for the life of me figure out why they would change it all of a sudden. I am trying to track down a previous report to see how it was presented in the past.
As for this business of saying, “We have seen this kind of response with Irinotecan.” Well, I have asked no less than 4 neuroblastoma experts over the past year, and all of them answered the same way. “Irinotecan can provide some improvement during the first few months and then its primary function is to prevent the disease from accelerating.” Now all of a sudden the story is changing. Of course, this new observation is coming from a doctor that was not happy about us using Protocel. Wow, big surprise there. NOT!
Well, I don’t know where I’m going with all of this. Of course, most sane parents would be happy with the news that the cancer in their child has improved. For the record, I am ecstatic about the news we have received. Also for the record, I firmly believe that this news would not have been laid upon our family had we not found Protocel. Having said all of that, I guess I was hoping that NYC would have at least been a little bit curious as to how we got to where we are. I also was NOT prepared for them to shoot our urine numbers out of the sky and then proceed to douse them with gasoline and burn them to ashes. Oh well, I guess some dogs just won’t learn new tricks....no matter how much you try.
Scott
Thursday, July 24, 2003 8:46 PM CDT
Sorry for the lack of updates. My computer has been giving me some headaches this week. I am trying to get it all sorted out, if I do, I will post a "regular" update this weekend. Everyone is feeling fine. Zachary finishes up his week of chemotherapy tomorrow. No big plans for this weekend.
Scott
P.S. Yes. I am still in pain from my muscle pull/possible broken rib. Maybe I sneezed too hard?
Saturday, July 19, 2003 8:38 AM CDT
GOOD NEWS:
Zachary is still feeling great. He has slowly been adjusting his sleep schedule to prepare for the return to school in one month. Zachary’s bowling league still keeps him busy on Saturdays and he remains active with a variety of activities during the week to keep him occupied. Zachary has served his “sentence” this week honorably and without fanfare. Hopefully he has learned his lesson. Time will tell.
BAD NEWS:
Due to circumstances beyond my control, I am unable to convey to you through this page the story that explains the “sentence” or the mayhem that he caused. I truly wish I could, because it easily would fill many days worth of journal entries. Many of our close friends and family have called and been given details of the Zman’s exploits. If you cannot contain yourself and wish to call, I will consider telling you the story. However, I cannot break the promise to Zachary I made that I would not put the story on his page.
Rebecca News:
Yes, Rebecca DOES exist, and she is NOT locked in the basement. (Remember, we don’t have basements in Florida.) Rebecca started taking Protocel yesterday for her rheumatoid arthritis. We are hoping that it gives her the same kind of miracle that it has given Zachary. I will keep you posted.
Scott News:
I am now 8 days into my muscle pull. I go through the day pain-free with no complaints, however when I lay down for the night, my rib feels like a knife is being thrust into it. Rolling around during the night also is quite painful; I end up waking up several times from the pain. I believe that it is very slowly improving and that I will recover during the next week. Until then, I am not golfing, bowling, skydiving, bungee jumping, hang gliding, joining the Yankees, playing tackle football, or entering in the karate national competition. (Golfing and bowling hurt too much, I don’t do any of the other sports and I’m sure that if I entered in the karate thing I would set the record for the most broken bones received in one day.)
Tomorrow we have church in the morning, and then the Quantum House has their Ice Cream Social in the afternoon. After that we are seeing friends for dinner.
Scott
Thursday, July 17, 2003 10:45 AM CDT
THE UPDATE IS COMING******THE UPDATE IS COMING
Sorry for the lack of updates this week. It is not from a lack of excitement. I cannot go into details right now, but suffice it to say, I'll have a heck of a tale to relay to you all very soon. (I'm trying to compose myself from the mental anguish that I have suffered this week!) Everyone is feeling fine, so there are no medical worries to ponder over.
Travel Note:
Several weeks ago I wrote about the horrible roads in Alabama. I got several comical responses to those stories, but the best came from a friend who grew up near there and "took offense" to my comments. She recently traveled back there and had a similar experience with the poor visibility and lack of road markers during a rain storm. I AM VINDICATED!
Scott
Sunday, July 13, 2003 9:16 PM CDT
Yesterday was fun. We started out the day by going to Zachary’s bowling league. He has been doing so well there, they have removed the bumpers from his lane. At first, he got a little bit discouraged because his scores came down from the low 100’s to the 60 – 80 range. But he very quickly settled in to a rhythm and has bowled a 98 and a 92 with NO BUMPERS!!! After bowling we headed down to Boynton Beach to see our friends the Mathis family. Diane was hosting a bead jewelry party that a friend of hers was putting on. Some of the other moms brought their children, so there was a nice group of kids playing while the women picked out beads for bracelets. Zachary had one made that has just the letters ‘Z’ & ‘K’ on it. At Boggy Creek he met and got friendly with a girl named Kimberly. (As I write this journal entry Zman is sitting behind me like a government agent whose job is to monitor content for “illegal” comments or unacceptable stories....don’t worry, he has to fall asleep eventually.) Anyways, after the 19 hour and 36 minute (not that Bo and I were keeping track of time) party, we went to dinner with the Mathis’s and then to bowling. Now, keep in mind that I am still injured. I guess I have pulled a muscle on my right side. (I bowl with my right arm.) Well, the first game, I bowled WAY over me head and despite the pain I got a 160. Bo had a 128 and Diane came in third with a 125. The second game, the wheels came off of my bus and I got a score just over 100. Diane got around 120, but the story of the night was Bo. He pulled out all of the stops and destroyed the pins with a scorching 174. (A personal high game for him.) The score would have been impressive on any day, but seeing as he was working on like 2 or 3 hours sleep from having worked all night long, I’d say he deserves the accolades that come with winning.
We are still working on getting Zachary ready for school in about a month. We’ve realized that the first week of school is a chemotherapy week. Normally I’d just postpone the chemo for a week so he could at least start out the year with a “normal” week, but we just had an extra week without chemo when we did testing after vacation, so I’m leery of adding too much time right now between treatments. We’ve talked about moving up a few days this round and then a few days the next round, but that would entail getting chemo at the hospital (instead of the doctor’s office,) and I just don’t see subjecting ourselves to that kind of punishment on purpose. So, I guess he’ll just miss the first week and try to catch up the following week. Rebecca will be bringing him in after chemo to work with the homebound teacher, but I envision the fist week as being hectic for everyone. We have a meeting set up with the school officials and with the child life specialist for just before school starts, so hopefully we can work out all of the details that will help us ensure that Zachary is getting the best shot possible at a “normal” education.
One of the many mysteries whose answers elude our friends that have not walked down this nightmarish road is how we fail to “blindly” celebrate when good things happen and how we always find ourselves dealing with new and changing challenges when things are looking up. Well, to this I will say that YES, we do celebrate and bask in the glory of good news when we are blessed with it. But, you must keep in mind that having a child in this situation can present unique challenges that must be addressed. An example of this is Zachary’s newfound lack of shyness around the girls. While we are pleased that he has come out of his shell, we have to be very aware of how sensitive he has become about his appearance. He used to go everywhere with no bandana or head covering with no hair, while now he won’t let anyone see him without something covering his head. He has also started to take out his hearing aids, claiming they “hurt.” With a little bit of prodding we have discovered that he remembers other children making fun of them. I can remember taking him into stores and other children and adults would be staring at him and he just didn’t care at all. Now, his feelings get hurt. It is wonderful to be able to focus on problems that revolve around feelings and emotions as opposed to medical reports and life and death decisions. (Just like me...give me an inch (good reports) and I ask for a mile. (A return to normalcy.))
Scott
Friday, July 11, 2003 2:01 PM CDT
I must be getting old or something. Zachary asked repeatedly about going to the water park over the past week, so I formulated the plan to get a group together. It seemed like a good idea at the time. Now, 1 week later and many phone calls later, I am throwing in the towel. The water park has over 800 people in groups showing up Friday morning next week. Thursday isn’t much better either. The weekends are a zoo, so I’ve scrapped the idea. I think we will go on a Monday. Maybe in a couple of weeks. I know that Monday’s are difficult for many people, but I just don’t have the energy to try and coordinate this anymore. So, I will give as much advance notice as possible and if you can make it great! If you can’t, well that is ok too.
I’ve been trying to get better at golf. There is a nice little inexpensive par 66 course that is minutes from our house. Zachary likes to drive the cart, so it works out great. We went this morning and it seemed like the perfect day to get a round in.....then I pulled a muscle on my side, (the getting old thing again,) so we stopped after 8 holes. Oh well, I guess I’ll have to start stretching out before doing physically strenuous activities like golf, swimming, cooking, typing, reading, etc.
Zachary still feels great, so we will probably go out to a movie tonight. Tomorrow he’s got bowling and playing with his friend Mitchell who he hasn’t seen since camp. The BIG disadvantage to not staying in WPB for chemotherapy is missing out on time with our friends that live down there. Sacrifices and trades and compromises....cancer sucks but life is wonderful!
Scott
Wednesday, July 9, 2003 9:24 PM CDT
[Reminder] In yesterdays journal entry I wrote about trying to put together a group for the Rapids Water Park on Friday the 18th. We have about 13 people so far that are interested. If our group has at least 21 paying customers (over the age of 3) the price drops to $18.00 per person (+ tax.) I am going to call tomorrow to find out how many other groups are going that day. I will post an update as I get more information.
{Thinking to myself} ------Where did I put that soapbox. Aha, here it is, let me climb up on top of it......OK, CAN EVERYONE HEAR ME OK OUT THERE? Good!
Wednesday’s are my day on the road. I drive from 5:30am until 7:00am to get to my first customer in Ft. Lauderdale, and then I work from shop to shop as I drive north towards home. Ever since Zachary was diagnosed, driving has become a time of thought and reflection for me. Even when I am making a local trip to the store, I find myself delving into thoughts that don’t seem to haunt me as much the rest of the day. Today, while I was working my way south, my thoughts were focused around Protocel and how we got to where we are today. I know most of you have followed these entries and Zachary’s progress faithfully, so the details have passed before you on your screen time and time again. Today’s thoughts somehow wondered into a new territory that had me thinking about analogies to offer those that are lucky enough to have not walked in our shoes.
When I first started these journal entries, they were strictly a means to communicate Zachary’s progress to the masses. Slowly, they evolved into a therapy for me for dealing with the daily roller coaster ride that is childhood cancer. Many times in the past I have received comments about my writing. One comment in particular that has stuck with me has come from other parents that have said I sometimes write about things that they have experienced and had not been able to put into words. Today, while I was driving and thinking about Protocel, I was focusing on how to convey some of these mysteries to our friends and families that have lived this ordeal with us.
Over the past 3 ½ years we have had many traditional and non-traditional therapies and treatments offered to us. Treating cancer is far from an exact science. There are constantly changing protocols and medicines that require hours and hours of research. Many times you search for answers only to find dead ends. The best analogy that I could come up with is this: Picture your child has been abducted and locked in a room. You know where they are, but you don’t have the key and you don’t know how much oxygen is in the room. They may have hours, minutes, or days, you just don’t know. You are taken into a large warehouse where there are twenty swimming pools. Each pools is 10 feet deep, 20 feet long and 20 feet wide. There is just enough light in the warehouse to make out the outline of the pools, but you can’t see into the water at all. You are told that they key to rescue your child MAY be at the bottom of one of the pools. So, what do you do? Do you give up on the obviously daunting task and spend time outside your child’s locked room, talking and trying to get quality time? There are of course friends, experts, strangers and family members all giving you advice as to which pool to start in and where to look. Once you choose a pool, you dive in and realize that you can’t see anything. As you feel your way around the bottom, you can’t help but wonder if the turbulence from your legs and arms will move the key to an area you have already searched as you resurface over and over again to get air. Don’t forget, there are twenty pools, AND you have no guarantees that the key even exists! Which pool do you start with? Who do you listen to? How much time do you spend in each pool? Frustrated yet?
The pools represent the various treatments and clinics that have been presented to us over these past 3 ½ years. Protocel was one of them. I did some “swimming” around that pool in October of last year and couldn’t find any sign of the “key.” So what made me go back to THAT pool in January and look again? I was somehow able to put aside the doubts that bombard your brain as you search for answers and see the hope and energy that were radiating from little Jake. If you are considering this non-traditional treatment, I implore you to call at least 3 or 4 families that have a relative that has used it in the past or is currently using it. The personal testimonies are what convinced me that there was NO downside to trying this for our son. Once again I feel compelled to remind you that we gain nothing financially from anyone's use of this medicine. Our only gain is knowing that we did our best to help other families navigate the dark waters of the seemingly endless pools.
So, why did I feel compelled to write about this today? Well, I am still in shock over our good news. I still am very much aware that we still have active disease and that we have a LONG way to go, but we have been truly blessed to have gotten to where we are by way of Protocel. The word ‘hope’ is back in our vocabulary. It had been lost. NO, actually it had been taken away from us by the professionals that had acted on their experience and ripped it from our grasps. I don’t blame them for doing what they have been trained to do, but I will hold ALL of them accountable if we are able to someday show the world the wonders of Protocel and they choose to ignore it.
Scott
Tuesday, July 8, 2003 6:02 PM CDT
ATTENTION ALL SOUTHEAST FLORIDIANS
(I really hate to exclude the visitors that are checking in from afar, but this is the best way for me to reach out and touch a whole bunch of folks.)
Once again I am throwing my hat into the party planning ring. I don’t know why I subject myself to the added stress....(sure I do...Zman wants to go to the Rapids Water Park,) but I here I go again.
I am trying to put together a group for a day at the Rapids Water Park in West Palm Beach. The day I have selected is Friday July 18, 2003. One week from this Friday. The park opens at 10:00am, so I figure the earlier the better......(best chance of beating the crowds onto some of the more popular rides.) The regular admission price for anyone over the age of 2 is $25.00. We can get a group rate if we have more than 10 people. The group rate is $21.00 per person. I will make some inquires, but I think we will all be on our own for paying. Before I get too deep into this, I’d like some feedback from anyone who is interested in joining us. There are three of us, and I’m going to go out on a limb and say that I can blackmail the Mathis & Charlton families into going, that will add at least 7 more depending on which children are available. THERE ARE NO PREREQUISITES OR ILLNESS REQUIREMENTS THAT ARE NEEDED TO ATTEND. You only need to have some money, and a desire to get wet! (This is a family page...don’t get x-rated on me.) In case you live in hole and have never heard of this park, they have a wonderful children’s area with very tame slides, a relaxing lazy river, a fun slide for children 6-99 that is not too fast, a pair of dark tunnels that you can ride double tubes on with your child, a huge tunnel that holds 5 or 6 people, and then some more advanced fast rides for the truly adventurous. Their web page is www.rapidswaterpark.com if you want to check them out. I chose a weekday to avoid the weekend crowds. (I know it is still summertime, but I’m hoping that early on a Friday will be better than ANYTIME on a Saturday or Sunday. That is pretty much it. The web page asks you to call ahead to plan a group attendance, so let me know as soon as possible if you are interested. Email, call, drop by, send up smoke signals, pound drums, tap out Morse code.....just get in touch.
Medical News:
Zachary still feels great. Zachary’s friend Mitchell had a good checkup today. We’re jumping for joy! Keep all of our kids in your thoughts and prayers.
Scott
Monday, July 7, 2003 6:57 PM CDT
It’s been an interesting game lately.......the Japanese sensation Nagasaki Neuroblastoma has lived up to his reputation of being a clutch player....coming up with huge hits that have devastated the underdog Zman Wolves. It’s the bottom of the ninth, the Wolves are barely holding onto a 1 run lead. The Neuroblastoma team has the bases loaded with two outs. It’s no surprise that the manager for the nasty Nagasaki team will have Mr. Neuroblastoma pinch-hit to try and bring home a tying or even winning run. The manager for the Wolves is out of veteran pitchers; he is going to have to pull some magical rabbit out of his hat to keep Neuroblastoma from winning the game. He makes the call to the bull pen and WOW, the rookie Protocel Kid gets the call. We haven’t seen much from this guy but we’re expecting great things. I’m amazed that the manager is putting this rookie in with sooooo much on the line. He takes a few warm up pitches and here we go. The first pitch is a ball. Neuroblastoma doesn’t even flinch. He wants to walk a run in the easy way, figuring Protocel’s nerves will overwhelm him. Here is the second pitch and what a pitch it is! Strike down the middle. Neuroblastoma was expecting a slider but he got a nasty MIBG pitch that didn’t work out the way he wanted. He steps out of the batter’s box and regroups. The count is 1 and 1, Neuroblastoma steps back in and Protocel winds up, here comes the throw and WOW, this time he goes to a flaming bone marrow pitch that knocks the catcher back a few paces. Neuroblastoma is behind in the count now, 1 and 2.....and NOT liking it. Protocel takes a deep breath; he gets the sign from the catcher and delivers a sneaky urine pitch......STRIKE THREE. NEUROBLASTOMA STRIKES OUT!
Medical News:
The urine came back. As much as I hate to deal with that lousy report, I am pleased with the numbers. Keep in mind that it was the doctor’s idea to send off Zman’s urine, NOT MINE. I was over the whole “urine” thing many weeks ago. Well, here we go. The HVA has been running in the mid 20’s. It spiked after starting the Protocel (as expected) and went up to 39.3. Then it settled back down to 26. Normal is below 10 or so. (The normal range is anything BUT an exact science.) Today’s report has the HVA at 12.5!
WOW. We’ve never seen it that low. They never used it prior to relapse and after relapse it never got below 23. The VMA has a similar story. It has hovered between 9.8 and 16 over the past year or so. The most recent one was 11.2. Today’s report shows a VMA of 4.8! WOW again. Once again, we have never seen one come in this low.
So, what does it all mean? Well, unless you are totally without a brain, you caught my baseball metaphors in the first paragraph. This round is clearly going to Protocel. Three separate tests are showing improvement. Dismiss any one or two....go ahead......but the third will smile wryly at you and force you to ask yourself this; “How is it that three tests for neuroblastoma that have each been consistent over the past year are ALL showing improvement at the same time?”
This is not a cocky “I told you so” attitude. This is merely one father basking in the glory of good news that has been very, very, very long in the coming. None of us can predict the future for ourselves, let alone for our children. These diseases are masters at finding ways to ruin the best plans of the most earnest families.......but I for one have learned to relish in the victory while it presents itself.
More Medical News:
My office manager Phyllis’s father was diagnosed with metastatic lung cancer about 1 week after Zachary started Protocel. At that point, we obviously had no personal anecdotal evidence to provide on Protocel, so we referred them to other adult patients that have had success with lung cancer and Protocel. When he was diagnosed, the doctor told his family that he was too weak for chemotherapy. They were willing to give him radiation, with the hope that it would buy time. He started Protocel about 3 months ago and after 2 months he gained back 2 or 3 pounds of the 50 he had lost. Last week he had his first scans since radiation. The results showed a 50% reduction in the cancer in his lungs. The doctor’s office informed him that they needed to set up an appointment with the doctor to go over the results. (They were evidently surprised to see such improvement.) He WILL be staying on the Protocel.
Our local doctor is putting together all of the recent results to ship off to NYC for the top dog to look over. It will be interesting to see how he comments on our 3 (THREE), (TRIO), (TRES) separate test results all showing improvement.
Scott
Saturday, July 5, 2003 6:39 PM CDT
****PHOTOS FROM THE CSC DINNER IN ALBUM****
I hope everyone had a safe and enjoyable Fourth of July! We went up to Vero Beach yesterday to visit with my folks. We swam, cooked out and had a nice relaxing day. Last night we went to Riverside Park in Vero and watched a great fireworks show. Today we got home and were just relaxing before Zachary’s bowling league when our friend Jeff Charlton called and asked if we wanted to get the kids together to bowl. I told him about the league, and he brought Jessica, Christina and Matthew up to our lanes to bowl after Zachary finished with leagues. Zachary is doing so well with his scores that the director had him start today with NO bumpers. He still did pretty well; he bowled a 61, 77 and 78. Not bad for no bumpers. We bowled a few games with the Charlton clan and then they came over to the house and we cooked some chicken on the grill. Another great relaxing day with people we care about. Matthew decided to sleep over and join us at church tomorrow, so Jeff will come back up and maybe go golfing with me if the weather holds out after church.
Medical News:
I don’t know if I mentioned it, but I gave in and let the hospital take a urine sample on Sunday last week before we started chemotherapy. They sent it off to the CORRECT lab in Atlanta and we should have results by Tuesday. For those of you that have endured my ranting and raving in the past about urine numbers, I am now a changed man. (Yeah right.) I AM! Our doctor’s new associate made some very sobering comments about urine. I’ve always known that is far from an exact science, but she made it clear that at best, it is useful as a tool for occasional use, not constant monitoring. The test is just too unreliable to use for making treatment decisions. So, we are using it to hopefully help confirm the good news we received last week. Now, if for some reason the urine comes back unchanged or if it has worsened, there will be no reason to panic. We did NOT monitor his diet prior to giving the sample, AND we know that these levels can fluctuate for a variety reasons unrelated to cancer levels. The bottom line once again is we’re hoping for low numbers, but we’re not going to panic if the numbers don’t look good.
REMEMBER--------ZACHARY LOOKS GREAT, FEELS GREAT, AND HE HAS HIS FIRST EVER CLEAN BONE MARROW REPORT!!!!!!!!!!!!!!!!!!!!!
We need to keep our eyes on the ball here folks......there are lots of ways to get distracted from the great news we have received.....lots of nay-sayers out there doubting the Protocel, or doctors giving us caveats to the news........but my opinion is that they can ALL POUND SALT! (Whatever that means.)
Scott
Wednesday, July 2, 2003 3:50 PM CDT
*********** ITS CLARIFICATION TIME ********************
I would like to clear the air about some misunderstandings that have arisen from my recent journal entries. I got two emails from faithful followers that misinterpreted my explanation of “chronic neuroblastoma” and were thinking that I was crediting our recent good news to the chemotherapy. THIS IS NOT THE CASE!!!!!!!!!! (Read on.)
When Zachary relapsed 1 ½ years ago, the news we received from the doctors was dismal at best. We knew that relapsed neurblastoma was a death sentence. We also knew that some children could get more time, but eventually, they all die. One of Zachary’s transplant doctors had been called for an opinion, and he offered this gem. “Zachary already had a transplant, I wouldn’t give him anymore chemotherapy. Why subject him to that? Let him take what time he has.” [FOR THE RECORD. IF WE HAD LISTENED TO THIS SAGE ADVICE, ZACHARY WOULD PROBABLY HAVE BEEN GONE BY APRIL OR MAY OF 2002!] Anyways, at that time we chose to start a chemotherapy called Topotecan. This agent is known to work well with relapsed children like Zachary. It does NOT have a great record for putting the child back into remission, but it can knock the disease back down to “acceptable” levels. Zachary did get a response from that chemotherapy and had a reduction in the amount of disease that he had relapsed with. After 5 rounds of that chemotherapy, we flew to NYC for the first time (this week last year) and met with the experts up there. The treatment plan that we were trying to get on required Zachary to have lower levels of disease. Because of this, the doctor had us start Zachary on Irinotecan & Cytoxin. Zachary did have a slight improvement after two rounds, but his levels were still too high to be eligible for the plan we wanted to do. That brings us to August of 2002. At that point, the NYC team suggested we stay on the Irinotecan alone, to see if we could keep Zachary stable. The “chronic” idea seems to date back to last year. The NYC doctor that coined the phrase has seen hundreds of children like Zachary over the years. He realized that they usually fall into one of the two categories that I mentioned in that earlier journal entry. Either they do not respond to therapies and die, or they do respond and get months or even years of relatively “easy” treatments. Most of the current treatment options that I’ve read about over the past year have more documented success with children that have less disease going into the treatment. (This makes sense…less is easier to clean out.) Even the treatment options that are experiencing success, (cancer-free children) have got to be watched for many years. Most of these newer plans have only been around for a few years, so it is way too early to say the child will NEVER relapse again. Certainly some of the children are doing well. Some are like Zachary where they keep a level of active disease in their bodies, but are without symptoms and feeling well. These children will get a benefit from an agent for a finite amount of time, and then will have progression of disease and will have to find a new agent to attempt to bring the disease back under control.
Now, when we started the Irinotecan alone back in August of 2002, I asked a lot of questions. One of those was this, “Can we expect much more improvement from this agent, now that we have already done 2 rounds and gotten moderate improvement?” The answer was, “Yes, you may see some more improvement, but more than likely the bulk of the improvement will occur early on, and then the disease will stabilize.” I have never heard of ANY doctor saying that Zachary could get great improvement this far out on this agent!
Based on everything that I have seen and learned about this disease over the past three years, I firmly believe that the improvement that we got in our reports last week is from the Protocel. The Irinotecan may be helping to keep the cancer “knocked down”, but the Protocel is doing the dirty work. Keep in mind that this is a very bizarre disease. It is one of the only childhood cancers that can spontaneously go into remission. BUT, in children like Zachary with progressive disease, that is not something that would be expected….believe me….I’ve asked. The kids that fall into that category are usually in their initial protocol, not RELAPSED children.
In summary I would like to say that we are in no way discounting the amazing amounts of prayers that are being said for Zachary each and every day across the country and around the world. Prayer isn’t an exact science either. For all I know, the prayers are what put us together with Jake’s family and encouraged us to take a chance on this wonderful supplement.
Scott
P.S. There is one more issue here that I have not seen mentioned often enough. Even if you believe the Protocel has had nothing to do with our improvements, how can you possibly discount the renewed hope that it has given Zachary, our family, and our friends? If things end up not working out for our child, we will have lived with hope when we were given none from the professionals. Hope may not be able to rid his body of cancer, it may not pay the bills, it may not do a lot of things, but we walk with our heads a little higher right now, and we don’t spend 24 hours a day dreading burying our son.
Monday, June 30, 2003 8:09 PM CDT
I feel obliged to mention again the fact that there are test results to read in the journal entry dated 6/27.
As we work our way through the myriad of options and scenarios that are constantly being thrown into our laps we try to maintain a sense of sanity in our lives. Once in awhile we get good news, (like this last report) and that always helps. Two weeks ago when we picked up Zachary from camp, we were fortunate enough to visit with Zachary’s diagnosing doctor from 3 years ago who was volunteering his time at the camp. During that visit, he used a term that I hadn’t heard before, “Chronic Neuroblastoma.” I did some research on it found some interesting excerpts from Dr. Kushner who was our doctor in NYC. I emailed the doctor from camp and asked about it, his response was enlightening. I’ve included that response in its entirety.
[Dr. Kushner was the first person that I am aware of to coin the phrase "chronic NB." It was mentioned at the NB Conference. When a child with high risk NB relapses, typically one of two clinical courses ensues. The chronic course is one of slow progression, with transient responses to various therapeutic attempts. By switching to different therapies when new progression occurs, one can have a prolonged survival with this clinical course (months to even years). The alternative course is characterized by rapid disease progression and death, with no response to therapeutic attempts. One cannot predict which course a child with relapsed NB will take, but Zach is clearly following the chronic pathway. How long Irinotecan will provide benefit for Zach is unknown. My recommendation would be to continue it until there is disease-progression, and to be planning now for Zach's next therapeutic endeavor. I wouldn't be in a hurry to change therapy, as long as he does not have progressive disease. The more mileage you can get from each therapeutic approach, the longer he will be with us.
It was great to see you and Zach at camp. He looks great!! ]
Obviously we were pleased to hear that our choice of plans was coinciding with this doctor’s recommendations. We know that with this disease there are no guarantees, and that we will always be waiting for the other shoe to drop. But this week we are celebrating; we have good news to get us through the next weeks and months. Zachary feels great right now, he looks great and he is enjoying life.
Scott
Sunday, June 29, 2003 10:11 PM CDT
*****NEW PHOTOS IN THE ALBUM*****
[IF YOU ARE LOOKING FOR TEST RESULTS, PLEASE SEE THE JOURNAL ENTRY FROM 6/27; IT HAS ALL OF THE INFORMATION THAT YOU SEEK]
Zachary started chemotherapy today again. We were up on the temporary floor at St. Mary’s. Our room left several things to be desired. The window was cracked severely, the A/C was NOT working, and there were ants all over the floor. The nurses quickly moved us to another room. All in all, the floor is not a total disaster. If it is truly a temporary home while we wait for new digs, then we will deal with it. We are home tonight, and Rebecca and Zachary will commute for the next four days to the doctor’s office to get his chemo. Hopefully this will work out ok. He has already ripped the protective cover that surrounds his port and needle. I had to add another one to prevent germs from getting to the needle or his accessed port. (This is exactly the kind of thing that I was worried about when we first discussed coming home. If we were at Quantum House, we could have been up on the floor in a matter of minutes. The nurses would probably do the same thing I did.)
After chemotherapy today we went out to dinner with many of our Cancer Sucks Club friends. The dinner sort of evolved quickly over the past day and a half, so if anyone from the WPB area is reading this and feeling left out.....it was NOT intentional. We had spoken with Kathy Charlton about “doing” dinner after chemo, and then Diane and Bo Mathis had asked if we could get together....so we talked about all of us eating somewhere....then I started to try and think of a place where we could eat and talk as a group, and I remembered Matthew Charlton’s birthday party was at this nice little Italian place that had a semi-private room.......one thing led to another and 24 hours later we were having dinner with Kathy and her three, Jessica, Christina, Matthew and Jordan (Christina’s friend), Ed & Kathy with their two, Kyle and Colette, Bo & Diane with their two, Mitchell and Kaleigh, Ed and Laurie with their two, Amanda and Sydney, Tricia with Jessica, and then Genna came with the Mathis’s and Kathy C’s mom Barbara joined us as well. Oh, my gang was there to of course. (I seriously hope I didn’t forget to mention anyone.) Anyways, it was a very nice evening. The restaurant was very good to us, and we had the room for as long as we wanted it. The kids all sat together and had fun, and the parents were able to talk and relax for a few hours. I had run out earlier in the afternoon and gone to Publix to get a sheet cake. I had them write “Cancer Sucks Club” on it. We never got around to reading any minutes or voting on anything, but it was comforting to be with these people for an evening. I wish we could do that more often and I wish we could get more families involved. I believe it was good for everyone!
LESSON OF THE DAY:
Before I give my wisdom of the day, it is necessary to give some background information. Zachary loves to bowl. This is nothing new to anyone that knows him. He has gone bowling many times with his friends. Whenever one of the kids gets left with a 7 – 10 split, (or an equally impossible split,) I usually make a loud promise to pay them $500.00 if they somehow manage to make it. This has worked out to be a very safe bet for me in the past. That is, up until yesterday. Zachary bowls in a league on Saturdays. He has missed three weeks in a row because of camp and traveling. The bowling alley is nice enough to allow the children to make up their “lost” weeks at their leisure, so we took Zachary yesterday morning to bowl six games so he could make up for three weeks of league play. (They bowl two games each week in league.) Well, in his last game he had a frame where his first ball knocked down seven pins, leaving a nasty 5-7-10 split. This is basically the 7-10 split (the hardest to make) with an extra pin off on the 7-pin side but just far enough away that a really good ball would need to be thrown to pick up those two pins. As far as the 10-pin, well, it would take an utterly amazing shot to make that as well. He needed to just barely nick the left side of the 5-pin so it could slide over all the way across and catch the 10-pin, while at the same time hoping that the impact from the 5 pin would send the ball far enough left to catch the 7 pin. Me and my arrogant big mouth blurted out, “$100.00 bucks if you make them all.” Zachary is used to hearing these kinds of comments, so it didn’t really rattle him. I followed that comment up with, “Seriously though, you should aim for the two pins that are on the left side, you might be able to at least get both of them.” (Thinking that it would require a perfect shot, and that the 10-pin was completely out of the question.) Zachary stepped up to the line and everything slowed down like in the Matrix. As soon as the ball left his hand, I saw my wallet flash before my eyes........the ball had barely touched the ground and I knew I was in trouble. Sure enough, the ball went straight to where it needed to go.....it kissed the 5- pin on the left side, sending it sliding off to tackle the 10-pin, and got just enough of a bump to pick up the 7-pin. So, now you know what that scream was on Saturday at around 10:12am....Zachary jumping for joy.
The moral of the story is, don’t write checks your bank can’t cash! I’ve opted for the monthly installment plan.
Scott
Friday, June 27, 2003 6:27 PM CDT
Ok, the results are in. Please keep in mind that this is the first MIBG scan that we’ve ever done at St. Mary’s. All three of the previous ones were done in NYC. It is difficult to compare from one machine to another. The last two NYC MIBG scans showed definitive uptake (cancer activity) in several areas including thoracic spine, hips, ankles, left cranium, pelvis, sternum, ulna, clavicle, femur and humorous (spelling?)
The St. Mary’s MIGB showed definitive uptake ONLY in the thoracic spine. It also showed possible/marginal uptake in 3 or 4 of the above listed areas. If the scan was done correctly, it appears that there has been improvement in several areas. Some not “lighting” up at all, and some only “lighting” up marginally. This is good.
Zachary has had approximately 16 bone biopsies and bone marrow aspirations done in the past three years. The worst one was the one from diagnosis. That one showed over 95% cancer cells. The best we’ve every gotten back in the past 3 ½ years is clean on one side and about 3-5% on the other. Even when Zachary was in remission in 2001, his bone marrow still showed some disease. Wednesday’s test showed NO DISEASE IN THE BONE MARROW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The doctor tried to give me the caveat that it’s possible to extract a sample and to have just missed the cancer “pockets.” While this is true, Zachary has had his hips punched full of more holes than you could possibly imagine, and he has never gotten back a clean marrow report. We were very impressed/happy with this part of the news.
So, where does this all leave us? Good question, I’m glad you asked! Well, I am 100% convinced by everything I have heard/read over the past year that this improvement in the marrow CANNOT have come from the chemotherapy that we are doing. Any benefit (improvement) would have been seen after initial rounds, possibly after as many as 6 rounds, but certainly not after a year of stability. This leaves us with the Protocel. Once you accept the fact that the Protocel has gotten us this improvement, it is easy to follow a line of logic that will dictate the following: Marrow is easier to clean out than bone lesions. ----->Meaning that the lesions are being worked on by the Protocel, and the marrow has already benefited.
The bottom line here is that we are cautiously optimistic. We are most pleased by Zachary’s clinical appearance. He looks and feels great. The doctors, nurses, our family and friends have all concurred on this fact. With that in mind, the improvement in his marrow is icing on the lima beans. (How else are you going to eat those things?) The possible improvement in the MIBG scan is also a bonus. Keeping in mind that comparing results is at best a tricky science, we at least have a baseline for that scan to use 3 months from now. Assuming Zachary is still feeling well at that point, we will probably repeat the MIBG scan but NOT the bone marrow. (Why torture him with that invasive test without reason?)
I hope I have adequately explained this all to you. If you have questions about any of this information, or if you just want to call up and scream your excitement over the phone, give us a call.....we’re here! If you don’t have our phone number, it’s probably because we don’t want to talk with you. (Just kidding.) Email us and we will gladly explain what this all means.
As far as the future, we will continue the Protocel without fail! We also feel that continuing the chemotherapy for now is the best course of action. It is relatively “easy” on Zachary, and as long as there is still a positive uptake (active cancer area) on the MIBG scan, we don’t want to take any chances. The chemotherapy may be keeping the cancer from growing while the Protocel is slowly kicking its ass! A prospect I could live with.
Scott
Thursday, June 26, 2003 9:16 PM CDT
No news yet...sorry! I know you are all waiting patiently. I just had two quick things that I wanted to mention.
1). A very dear friend suggested that I write a letter to the CEO that I met with asking for written confirmation of the promises that he made. I wrote the letter and did my best to make sure he will understand that it is not just from me. I want to include a page of parent’s names printed and signed, so he will know that we are serious about this issue and that we want assurances regarding what will happen in the future for our children. I will be giving a copy of the letter to Dr. Gowda to show everyone, along with a sheet for anyone who is interested to sign. I believe that the more names we get, the better. These people need to know that we are not going away quietly into the night.
2). More Alabama stories. There was one more story from our trip that I completely forget to convey to all of you. I promise that I have in no way altered or exaggerated this story in any way. We were driving through Alabama listening to the radio when a string of commercials came on. I don’t usually listen, but one caught my ear. The announcer was advertising for a local emergency walk-in clinic. This is what he said: “Remember folks, it’s summer time. Everyone is out there cutting their lawns. This is the time of year when fingers and toes get cut off, and feet and hands get hacked up. So, if you are hurt, come to the __________walk-in clinic.” (Need I say more?)
Scott
Wednesday, June 25, 2003 9:09 PM CDT
Once again we find ourselves in the middle an oldie but goody....The Waiting Game!
Today Zachary had an MIBG scan and bone marrow test at St. Mary’s hospital in WPB. This is our first round of testing since we traveled to NYC in January. And, it is our first tests since starting the Protocel four months ago this week. What should we expect? Good question. I wish I had some answers for you all, but the truth of the matter is I have no idea whatsoever what to make of any information that we are given from these tests. If by some miracle they show the marrow being clean (something we’ve never seen in 3 ½ years), then I guess we would consider stopping chemo and declaring him in remission. Anything short of that will leave us guessing as to where we stand. If the numbers look worse than before, it could mean the Protocel is working and the disease just “appears” to be spreading, or it could mean that the Protocel is not working and that the chemo has stopped working. The only ‘real’ indicator we have right now is Zachary. He remains symptom-free and pain-free. Those are two huge factors that get me through each and every day. God forbid that ever changes, I don’t know where we’ll be. I should have results on the scan tomorrow and bone marrow results no later than Friday afternoon. As soon as I know something, you will know something.
St. Mary’s News:
For those of you that follow Zachary’s progress and live in the WPB area, you may have heard of the many changes taking place at our hospital. Several families have reported the goings on there from this past week. There have been numerous news stories about the Nicklaus Foundation working with Tenet to build the new children’s hospital. Our beloved floor got moved to a very old and rundown part of the hospital one week ago. The doctor, nurses, support staff and families were all left wondering what will become of our treatment facility. There have been many stories floating around....some mentioning our treasured photos of the children being taken down and put into storage, others saying that the ceiling tiles our children have made over the years were not going to be used for oncology anymore. Still other stories had us occupying the old wing permanently. It has pained me to see our friends going through this turmoil. It has also pained me to envision new families being subjected to anything but proper conditions. It is hard enough to go through all of this without taking away the amenities that make this ordeal survivable. We are fortunate that Zachary does his chemotherapy on an outpatient basis. He has not had a fever since August of last year (knock on wood,) so we have not had to deal with some of these stresses first hand. I still was very distraught by all of the news that was filtering down to me, so today, while Zachary was getting his MIBG scan, I wondered up to the CEO’s office and asked for an appointment. His secretary knows me from three other visits over the past year and a half. (I have not been shy about voicing my concerns to this man.) She granted me an appointment for the afternoon. Zachary was in the middle of getting his bone marrow test, so Rebecca and I were in the waiting room for about an hour. I went up and met with him. This is what I learned. (I cannot say whether any of the following information is factual, only that this is what was relayed to me today.)
1). The move to the third floor is scheduled to be temporary. We should be back on our original floor after about six months.
2). After we move back, they plan on renovating the entire third floor area, PICU and Step down included.
3). Once that is done, we will move back up to a “new” third floor that will include a comparable playroom to the one we had, a common area for parents to console and help each other, new rooms, ceiling tiles from our children, photos of our children all reframed in new “common” frames and new rooms.
4). The new area will be dedicated to oncology but will on occasion be used for overflow for another pediatric area. There will also be an area for transfusions, and other outpatient procedures so children don’t have to go to short stay.
The CEO had received many complaints over the past week about the changes that have been made. I explained to him change can be a difficult thing, especially when the hospital fails to inform everyone what is going on. If they displayed plans or photos that showed the new floor as it will look in about a year, and apologized for the inconvenience, families would be much more likely to cope with the temporary move. He claims that his staff had informed everyone properly. My response to that was, “Why do the doctor, the nurses, support staff and families all believe they are being swept under the rug into an outdated part of the hospital then?” He admitted that there was obviously a communication problem that he would address. I feel I made it CRYSTAL CLEAR that we are not transient patients or families. We are all in this for the long haul. Our kids are not there for a few days to recover from a tonsillectomy or appendectomy; they are being treated for weeks at a time, month after month and year after year. We are a community of families that looks out for each other and cares about the treatment and conditions that ANY of our families has to endure. Hopefully he got the message. Hopefully he was being honest to me about the plans for our floor. Hopefully!
I know I seem to be taking on one battle after another lately. Maybe it is some sort of way of compensating for an inability to win the one battle that vexes me most. Zachary’s cancer. All I know is that the more injustices I come across, the more pissed off and determined I become to right the wrongs that seem to never be ending. I pray for many things these days, and today, in addition to my prayers regarding Zachary’s tests, I pray that the powers that be at St. Mary’s don’t underestimate the resolve that the other families and I have when it comes to our children and the care they receive.
Scott
Monday, June 23, 2003 6:34 PM CDT
Ok, we’re home! Let me catch my breath for a second and I’ll gladly update this journal so you can hear about our exploits. Whew.......ok.....I’ve caught my breath. Where to begin, where to begin?
Well, Zachary is still feeling great. He had a blast at camp and a blast in Tennessee. He played all week with his cousins and felt great for the trip. The little tv/dvd player that we bought turned out to be a winner. Zachary was able to use his headphones and watch movies while we drove without torturing us with Power Rangers fight scenes or vampire battles in Blade. He never complained and kept himself occupied for the trip up and back!
I mentioned in my last entry some of the adventures that we had while driving. Well, there were more. I forgot to mention that on the way up we saw something that will probably scar me for life. For those of you that have seen the movie Driving Miss Daisy, you will remember the funny scene where she is being driven to the Piggly Wiggly grocery store. Well, I sort of have this standing joke that whenever I’m in a small “hick-like” town; I refer to the grocery store as the Piggly Wiggly. Well, sure enough we were driving through Alabama or Mississippi and pulled up to a traffic light right next to a Piggly Wiggly. (I wonder if the people that work there get paychecks with the store name written on them.......maybe they just abbreviate it with ‘P.W.’ to save everyone the embarrassment.) Anyways, that was quite the shock. I also noticed while driving through the Bible belt that there are some very interesting town names. ‘Coonstown’ sticks out in my mind......how has THAT name survived the ages? There was also a town named ‘Pontototoc.’ Now, either some famous stutterer named this town, or they have some bizarre law that requires a certain number of syllables in each town name, but regardless, I just didn’t ‘get’ what was going on in some of those areas. And speaking of the Bible belt, exactly how many churches per capita does any one town need? When we were in Memphis, they must have one church for every two or three families! There were literally three churches at some intersections. I’m not talking about little country one-room churches here folks; I’m talking about massive multi-million dollar facilities that probably service close to 10,000 folks each!!!!! Their school systems rank at or near the bottom nationally, and yet they’ve got millions and millions for their churches. Sales tax in Tennessee was 9.75%. Maybe they should throw the school system a bone and give them a few bucks. I know the churches probably need new television equipment to broadcast their services to the folks that have to sit waaaaaaaaaaaaaaaay in the back, but lets get real here!
The lake we went to is called Lake Pickwick. The place we stayed in sits right on the border of Mississippi and Tennessee. As you walked down the dock to get on a boat, you crossed the state line. The lake and surrounding area were beautiful. We got up there on Friday and went out on my brother’s boat to try and get a ski run in. Unfortunately, after running for about twenty minutes, we stopped the boat to put out the ski line and the engine would not start up again. We were of course out of cell phone range AND marine radio range. We had an awkward fifteen minutes or so where I could hear the banjo from Deliverance playing off in the distance while we waited for someone to help us out. Luckily a nice couple came over in their pontoon boat and offered to tow us as far as Goat Island, where they were headed. (There were no goats anywhere near the island, I was going to ask where it got it’s name, but somehow I feared the story would include someone getting on all fours and making farm noises, so I restrained myself and didn’t ask.) The only downside to letting this particular couple tow us was the engine on their boat. I’m not sure how many rubber bands it used for its power source, but I’m fairly certain we could have rowed back in less time. (No one else was offering to help, so we didn’t have much of a choice.) As we were moseying (is that really a word?) along, my brother kept trying to start the engine to no avail. The cell phone teased us a few times by giving him one or two bars on the signal, but every time he tried to call the marina, they would answer and be unable to hear us. (If you close your eyes, you can REALLY hear the banjo from Deliverance as you picture this all going on.) We finally got to Goat Island and they set us free. We reached the marina and they agreed to send a workboat down to tow us back. They also mentioned that they would bring an extra battery in case that was the problem. The workboat showed up and the guy jumped onboard. He looked (didn’t touch anything) under the engine cover and asked for us to try and start it so he could hear what it was doing. Of course, it started right up, first try! The look on the mechanics face was only slightly outdone by the look on my brother’s face. I can’t read minds, but my guess is the mechanic from Mississippi was thinking “Someone is going bark like goat for me for making me ride out here for nothing.” And I’m sure my brother was thinking, “Unf’nbelievable! I just tried this think like fifty times and NOW it starts.” Regardless, we shut it down and tried to start it again, and it failed. (Battery) Well, my brother keeps pretty good records. He had replaced the battery one year and one day prior to the breakdown. (That is actually an exaggeration, but is was close to a year.) Unfortunately, THAT battery was purchased in Pittsburgh, NOT Mississippi. So, we were buying a new battery. All’s well that ends well. The boat ran fine the rest of the trip. We got to ski, tube, swim and have fun. (I hadn’t skied in years, but still managed to get up on one ski.) Zachary tried to ski a few times. He got up and fell over right away. His pride got damaged, but nothing else. His focus was the tubing. No matter how fast we went, he wanted to go faster. (When we win the lottery, I’ll have to buy him a boat and tube for down here.)
Scott
Wednesday, June 18, 2003 4:25 PM CDT
We made it to Memphis! (Not without some drama…but we made it.) First let me say that Zachary had a blast at camp. He made some new friends, and had fun with his gang from WPB. While we were on our way up to Memphis yesterday, we stopped for lunch at a KFC. During that meal I asked Zachary a lot about camp, including whether or not he had made any trips to the Patch. (The Patch is the camp hospital. We had visited it before getting Zachary to pick up his meds. While there, we got to visit with Dr. Macarthur, Zachary’s original doctor three years ago. He said that Zachary looked great and that he had NO problems while he was there.) Anyways, Zachary informed us that he went to the Patch twice! Once for a fire ant bite that required some Benedryl, and once because he threw up! Well, I was immediately worried about the vomiting. I asked what happened, like any concerned parent would. The response was nothing like what I expected. “Well you see dad, I was having a contest with another boy to see who could eat a jalapeno pepper, and after I ate mine it was soooo hot that I drank a whole bunch of milk. I then ran to the bathroom and got sick.” My response was, “Why would you eat one of those?” (This is the part that I like.) “There were girls at the table! I couldn’t just chicken out.!” “Good point,” I said. Evidently there was this one girl that Zachary really liked. She is four years older than him, but he managed to build up the courage to dance with her at the camp dance. So my son will probably be appearing on the Fox show, “Anything For Love.”
Now, back to our driving adventure. The first few hours went great. The weather was perfect. Then, Rebecca took her turn driving and everything changed. We ran into some storms that made the going very slow. I’m one of the few men left on this great planet that is not afraid to ask for directions. In fact, I had a very detailed trip-tik from AAA that showed us every turn we would need to make. The problem we had was that someone doesn’t know the difference from North/South and East/West. We were traveling North on a certain road, looking for a major beltway that would take us West to another North highway. We made our approach beautifully, and then it happened……the signs for our next road only offered it in a ‘North’ or ‘South’ version. Here I am looking at the map, the road runs east and west…perfectly straight across……perpendicular to the North/South line on the compass……and the sign is saying that it is a North/South road. Well, considering that we were working in a Northern direction, we chose north. WRONG! We went about one mile and got off to ask for directions. The signs were saying “Atlanta”, so I wasn’t taking any chances. We were told to turn around and go south on the road until it ran into the road we wanted to reach…and then we were to go north. HOW IS THAT POSSIBLE? HOW DO YOU TRAVEL SOUTH ON ONE ROAD TO GO NORTH ON ANOTHER? WHERE WOULD THEY EVER MEET? They did meet up liked advertised, and we continued on our journey. We ended up eating dinner somewhere near Montgomery, Alabama. At that point, we decided that we could drive another two hours and reach Tupelo, MS. (We knew there were hotels there.) We left Montgomery on the ‘major’ North/South road that leads to Birmingham and onward to Memphis, cruising at 80mph. Unfortunately, after a few miles, that ‘major’ road turns into a traffic light ridden road that we averaged about 35mph on! After sitting at an accident traffic jam for 15 minutes, and getting out of the small towns, we managed to race ahead at about 45mph. The rain was increasing at this point as the light was fading. I would like to take this opportunity to complement Alabama on their sense of humor. Where else can you drive on single lane country roads with no centerline markers or right-side stripes to keep you on the pavement? I mean, it’s not like there is another choice on which road you can use to get north. Maybe this is some master plan to keep the local economy robust. With all of the traffic accidents, they must have a healthy auto repair and medical industry there. After a couple of hours of me swearing and Rebecca sweating over maps trying to find us a hotel, we chose our destination. It seemed within reach. Then, we hit a semi-major road. Everything was looking up….and then after teasing us for about 5 miles of highway, we saw an interesting sign, “Highway temporarily ends! You must exit!” Ok, I’m game. What next? So we exit where we’re told and we’re back on the country death road again. Eventually we made it to a Day’s Inn. To give you an idea of how much we were in the middle of nowhere, this morning when I asked the clerk for directions back to our “highway”, his reply was this. “Take this road here down about a mile. When you come to your first paved road on your right, take it!” (Not too many paved roads in that neighborhood.)
The good news is we’re here safe and sound. I’ll update again in a few days!
Scott
Sunday, June 15, 2003 1:12 PM CDT
Thank you for all of the Father’s Day wishes and Happy Father’s Day to all of the dads out there in the land of computers.
Sometimes I get the idea that my wonderful son spends at least 2 or 3 hours each day thinking of things he can do that will feed my creative process and prompt me to write about his exploits. Yesterday was once again one of those days. The phone rang at around 2pm. I looked at the caller ID and had a panic attack, it was Boggy Creek! During those first 2 seconds as I reached for the phone, a wide range of horrible scenarios raced through my mind. As I was lifting the receiver up to my ear I was going through the various things that could have gone wrong with Zman at camp. The girl on the other end of the line was Zachary’s team leader. (They divide the camp into 4 or 5 cabin groups that do many team activities during the week.) The first thing she did was to calm my nerves by saying that Zachary is having a wonderful time at camp. Then she said that she had two questions for me.
What could those questions be? Obviously something of extreme importance for them to call us.....right? It must be one of the following:
1). What is Zachary’s blood type? He needs a transfusion.
2). Is Zachary allergic to antibiotics? He got bit by a snake, a dog, a horse, a chicken, a cat, a squirrel, and a scorpion.
3). When Zachary wonders off into the woods alone, how long before he finds his way home?
4). Zachary was smoking cigarettes behind the cabins with the counselors and set the building on fire, do you have insurance to cover that kind of expense?
Surely one of these scary situations or something similar to them should have prompted the call! NOT.
What did they need to know?
#1. The camp director wanted to confirm that we were picking Zachary up on Tuesday morning and that he was NOT riding the bus back. (This was indicated on the pre-camp forms so they should have known this, but I confirmed it for her anyway.) #2. Apparently Zachary has been bothered by some faint memory from his childhood. He remembers being in a store parking lot and “someone” hitting him with a shopping cart and then not apologizing to him. (At this point I got very quiet. What do you say to a statement like that? Rebecca and I had no recollection of anything CLOSE to that happening EVER! And why would he all of a sudden in the middle of camp think or be bothered by a thought like that?) I told her NO. We never hit him with a shopping cart. And if we had, we would have apologized. I also told her to inform the Zman that when we left camp Tuesday morning, we were driving straight to the nearest store so I could RUN HIM OVER WITH A SHOPPING CART! She giggled and informed me that she could NEVER say that to him. I tried to convince her that he understands my sense of humor, but she wasn’t buying any of that. Oh well. It will have to be a surprise!
Scott
Saturday, June 14, 2003 7:09 AM CDT
All’s quiet on the Eastern front! We have refrained from checking in on Zman at camp. Rebecca did that the first two years, so far this year she has been able to contain herself. Monday afternoon we’ll head up to Eustis, Florida and stay at a hotel so we can pick Zman up Tuesday morning. Then, it’s off to Memphis to see my two brothers and their families.
Rebecca and I have been keeping pretty busy. I worked all week and covered for my partner who took a much-needed vacation. Rebecca went golfing with me for the first time. She drove the cart while I chased down my wicked slices. We saw The Italian Job last night. That was a fun movie. Today, we’ll probably do some work around the house and then maybe do something fun this afternoon.
Other than that there is not too much to report. We’ll get back from our Memphis trip on Monday night (6/23) and then Tuesday we’re off to the hospital for three days of testing. These will be the first tests on bone marrow and scanning since NYC in January. (You can cut your nails now, or chew them down to the quick later.....it’s your choice.)
Scott
P.S. “Stress is directly proportional to expectations! Pray for the best and try to find comfort in the knowledge that you have done your best to bring about the results you seek!” (Unknown)
Monday, June 9, 2003 10:06 AM CDT
In my last entry I wrote about Zachary’s busy day on Saturday. As with all things in life, a little bit of bad seems to accompany all of that good. Saturday night at bedtime Zachary was complaining of back pain. Now, to keep things in perspective, (which is not always an easy thing to do) he was VERY physically active on Saturday. Driving golf balls all morning, bowling all afternoon, and then skating and shooting hockey pucks in the evening with me. So, a normal, sane, grounded, well-adjusted, calm, easy-going, unexcitable, father would have written the pain off as nothing more than the result of over-exercising one day after completing a week of chemotherapy. I of course fit that description to a tee…….except for the “normal, sane, grounded, well-adjusted, calm, easy-going, unexcitable” part…….I fit the “father” part! So I had an uneasy sleep that night, allowing myself to mentally drift to those thoughts that don’t belong in any parent’s head. Yesterday when Zachary woke up he again asked for Tylenol for some pain in his side. That of course fueled the fire of my overactive imagination. The good news is, that for the rest of the day and this morning, he has been fine. Hopefully all will remain “fine” so Zachary can enjoy camp and Memphis over the next two weeks.
Today Zachary is spending his time with the Mathis family. They just got back from Mitchell’s wish trip and invited Zachary to play all day with Mitchell and then go to RAW wrestling tonight and have a sleepover. (Zachary’s dance card is very full these days.) I won’t get to see him all day today or tonight. Tomorrow I am on the road, so I won’t see him until after dinner….and then Wednesday morning I am back on the road at 5:30am, so I will wake him up to say goodbye, and then he is off to camp for a week. (You’ll notice at this juncture of my story that Zachary does not have a journal entry where he writes about stressing out over being away from his dad or mom……yet here I sit thinking and writing about it. As long as one of the three of us is well adjusted I guess we’re doing ok.)
Did I mention that Zachary drives a ball much straighter than I do? Well, he does. He doesn’t hit it far, but it almost always goes straight. I on the other hand can hit a ball 500 yards to the right of where I am aiming! I have promised myself that I will get better at this game! (I also promised myself that I’d be a millionaire by the time I was 40 and that I’d be living in a mansion!) My buddy Jeff was trying to give my pointers on Saturday while we were driving golf balls. By no fault of his, I seemed to go from bad to worse. Oh well, I’ll keep trying! (Stock tip of the week! Invest in golf balls, I lose tons while out there playing….sales will be skyrocketing over the next few months.)
Scott
P.S. Speaking of golf, I heard a funny joke that I thought I would share with all of you.
It seems that the Pope received an invitation to golf with Prime Minister Sharon from Israel. The invitation mentioned golf and how a day of playing might bridge the gap between the two religions. The Pope convened a meeting with his Cardinals to discuss the matter. He explained to them that he had never even touched a golf club and that perhaps there was a Cardinal that would better represent the church. The Cardinals agreed that it was a bad idea for the Pope to play, having no experience, however there were no Cardinals that played well either. One of them suggested that they get Jack Nicklaus to play. He is devout Catholic. They could make him a Cardinal so it would be legit, and then they would be helping to bridge the gap while at the same time having a good chance to win! The Pope agreed. After the match Jack called the Pope to let him know how it went. He said, “Your holiness, I have good news and bad news.” “What is the good news Jack?”, said the Pope. “Well” said Jack, “I played the best round of these past fifteen years or so. My drives were straight, my irons were on, and my putts were great!” “That is wonderful. What can possibly be the bad news?” The Pope replied. “The bad news,” said Jack, “is that I lost by three strokes to Rabbi Tiger Woods!”
Saturday, June 7, 2003 9:51 PM CDT
Zachary had a busy day today. This morning we were driving golf balls. (NO, he does not hit them far. YES he does hit them much straighter than I do.) After that, we went to the American Cancer Society Bowling party that was the sendoff for R.O.C.K. camp. Zachary leaves on Wednesday for that. The plan for this evening was for me to play roller blade hockey with Rebecca and Zachary watching. There is a nice outdoor covered rink that is close to home. When we got there, we were the only ones to show up. Evidently Monday and Wednesday are the “hot” nights for playing. Saturday nights are hit or miss. So, Zachary and I skated around for about an hour. We had the whole rink to ourselves. We passed, shot, scored goals and had a blast. He absolutely loves to skate and play hockey with me. We very rarely get to do that. Usually I’m playing with the guys and he’s skating around outside the rink hitting a ball against the wall. Tonight, he got to skate all over the rink and shoot on both goals. At first I was disappointed that no one showed up, but once we started skating around and saw how happy he was, it made my evening!
It’s funny how the little unplanned things in life can bring such joy. Tomorrow we have church in the morning and then my folks are coming down to see Zachary and have lunch with us. I still need to cut the grass. I’m sure it will happen tomorrow.
Zachary’s friend Mitchell should be getting home right about now from his wish trip out
West. I’m sure Zachary will want to call and ask about all of the adventures he had. The two of them should have a blast next week at camp.
Scott
Friday, June 6, 2003 7:29 PM CDT
Once again, we are home. We came through this week relatively unscathed. Zachary managed to avoid vomiting all week, and Rebecca was able to hold down the fort during the day while I worked here in Jensen Beach. I did come away from this week with the newfound knowledge that I do not like to commute back and forth for a job. The twice a day 45-minute trip is not for me. Those of you that commute every day, my hat is off to you. (No comments on how bald I am please.)
Zachary napped when he got home. He ate a good dinner, had some Dairy Queen for dessert, and went to bed at around 8pm. That is quite a bit earlier than normal for him, but I’ve noticed this week that the chemo seems to be fatiguing him. He has a worn out look that I hope will soon pass so that he can enjoy camp next week. Tomorrow Jeff is coming up with Matthew and Christina and we are taking the kids to the driving range. They have short clubs for the kids, and Jeff and I will work on my wicked slice. After that, Zachary has a bowling party that the American Cancer Society is giving for the children that are attending camp next week. After that (our days can be busy if you haven’t noticed,) we might go to roller blade hockey so Zachary and Rebecca can watch me make a fool out of myself. Somewhere in the middle of all of that, I need to cut the grass and help clean the house. (I’m just worried that I’ll get bored with all of my spare time.)
Last night Rebecca and Kathy attended Jalen’s viewing. There were many families and friends there paying their respects and offering support to the family. Once again I find myself searching for words of comfort for a family that has fallen victim to this monster. Are there any words that will help? I don’t know. I hope that the large turnout last night will help Jalen’s family realize that there are many people that are keeping them in their thoughts and prayers. Other than that, I don’t know what to say. We will keep fighting our battles as we pray that the tide of lost children will ebb, and the rest of our little warriors will find success in their war with this demon.
Scott
Wednesday, June 4, 2003 8:27 PM CDT
Everyone here knows that cancer sucks. This is not a new concept. In fact, I believe it is safe to say that we all agree that cancer has sucked for quite some time now.
Today however, we need to recognize that cancer sucks more than normal….we have lost another child to this monster. Rebecca, Zachary and I only met Jalen and his family once or twice, but that doesn’t lessen the blow that is felt throughout the “cancer” community here in southeaster Florida. Our thoughts and prayers go out to this family as they are forced down a road that no family should have to travel.
Scott
Monday, June 2, 2003 7:07 PM CDT
Well, I’m either the most paranoid person in the world, or there is a true conspiracy out there to drive me crazy. Every time I feel like one of our battles is coming to an end, a new one pops up in front of us and forces us to take notice.
I’ve written about the urine test and how I’m pretty much through with using it because of all of the aggravation that it has caused us. Well, I made the decision that we would schedule a bone marrow biopsy and aspiration along with an MIBG scan to try and get a handle on where we stand. Today, Zachary started chemo, so I took the opportunity to let the office staff know that we are shooting for the last week in June. That gives them three weeks to set things up. The only downside to that schedule is that we will be bumping Zachary’s regularly scheduled chemo back by one week, but we won’t be returning from Memphis until late Monday night that week, so chemo would have been messed up anyways. So far, so good, right? WRONG! One of the office secretaries came back to the treatment room and informed us that they need an entire week for the MIBG scan. Ok, at this point in the story, I’m tempted to go into a long dissertation regarding the specifics of MIBG testing and what we know from experience. However, in the interests of time and my blood pressure, I will simple say that Zachary has had this test done on three separate occasions, and it basically consists of a 2 minute injection on day #1, and a one-hour scan on day #2. That’s all folks! After arguing about the timing issue for a few minutes, the secretary walked away. The nurse that was caring for Zachary had heard everything, and she said she would call nuclear medicine to confirm the details. Well, one phone call later we learn that our wonderful hospital is basing their scheduling on the wrong isotope. For those of you that don’t remember, I had to enlighten our hospital and doctor’s many, many months ago that they were using an outdated isotope when scanning for this disease. After arguing with me, they finally made some calls and got the situation fixed. But, they never bothered to find out that the newer isotope has a much faster absorption rate, so there is no need to scan after the second day. The bottom line here is that once again, I have to take a stance on an issue to enlighten people, so that my son can get the care he needs. I could roll over and play nice, but it would royally screw up Zachary’s schedule more than I care to imagine.
Do I somehow ASK for this craziness? Am I somehow defective mentally? What prompts a secretary to completely ignore a parent that not only has had to endure the procedure with their son, but has taken the action that allowed their hospital to have the correct isotope for other families? I’m not saying people should listen “blindly” to my ramblings….but why am I so quickly dismissed as a trouble maker? Do I exude an arrogance that just pisses people off? (Most of these questions are rhetorical…..answer them at your own risk…..I’m in NO mood for any help in making me look any nuttier than I do on my own.)
Ok. I’m sure most of you came here today to get an update, not to read my ramblings….so; Zachary had a good first day of chemo. (Note to self – using the words “good” and “chemo” in the same sentence should be considered an oxymoron.) It is amazing what we get used to. “Oh yeah, we had a great day of chemo….he only puked 6 times, and the diarrhea was limited to 4 times……” (That last sentence was just me making light of how we live by new standards with this disease….Zachary didn’t have any problems today.)
One of our good friends mentioned to me the other day that they’ve noticed my journal entries have taken on a more “harsh” quality as of late. If I had time to visit my psychologist, I’m sure she would say that it is a defense mechanism that I am using to express my frustration and fear of what will happen when this current chemo stops working. We are in our eleventh month of Irinotecan. Of the children that get a response to this chemo like Zachary, the average amount of benefit is 9 – 12 months. Some children get longer. I’ve tried to use the urine as tool to monitor progress, they’ve screwed that one up pretty good…I’ll never trust it again. My backup was the MIBG….and now that is in question.
I wouldn’t be so paranoid if everyone wasn’t out to get me.
Scott
Saturday, May 31, 2003 7:40 AM CDT
Zachary's cold is continuing to improve. He is active and happy. Last night we went to see the new movie “Finding Nemo.” This was another great flick for the family. (If you haven’t noticed......we like to see movies.) Today is filled with bowling, bowling and more bowling. Maybe we’ll be able to squeeze some bowling between all of that as well. Tomorrow we are going to a birthday party for Sarah, my partner’s daughter, and then it is off to Quantum House. I remain undecided as to whether I am staying the entire week or returning home to work.
WARNING***WARNING***WARNING***WARNING***WARNING***
THE FOLLOWING TEXT CONTAINS ADULT THEMES THAT MAY NOT BE SUITABLE FOR CHILDREN UNDER THE AGE OF 73!
[The following conversation actually took place yesterday between Zachary and Rebecca. It appears here unedited. Keep in mind that Zachary has a copy of the book “Where Do I Come From?, and has read it several times over the past three years.]
ZACHARY: “Mom, how did I get out of your belly?”
REBECCA: “You know how you got out of my belly, I’ve told you before.” (C-section)
ZACHARY: “How did I get IN to your belly?”
REBECCA: “Huh?”
ZACHARY: “Who did you have sex with to put me in your belly?”
Ok, the rest of this conversation dealt with the details of Rebecca’s relationship with Zachary’s biological father, and how she met me when Zachary was 8-months old. Zachary ended that discussion with, “Ok.” And then he was off to play with his toys. We don’t know what prompted this little conversation, but we’ve always said that honesty is the best policy. Zachary was only 4 when I adopted him, after the wedding, so he probably didn’t fully understand what was going on. Regardless of the fact that his biological father is out there somewhere, most folks that have interacted with us have no problem placing Zachary as MY son. Not to cast dispersions upon that long lost soul, but I’ve heard anecdotally that he doesn’t have two brain cells to rub to together. Zachary obviously got his brains, compassion and caring from Rebecca, and his steely athleticism from me. (Try not to chuckle too much while reading this....it takes away from the story.) My favorite daytime talk show host (Dr. Phil) would say, “The greatest influence on a child comes from the same-sex parent.” Well, unless I’m mistaken, that’s me!
In contrast to the average parents that would be dreading these life-affirming conversations, we relish them......they tell us that he is alive and kicking and thinking and still a force to be reckoned with! I’ll take the hard questions, the first date, the driving lessons, the college bills, the heartbreaks, the grandchildren......I’ll take it all....if the forces that be will permit us the time!
Scott
P.S. I mentioned many times that we attend church when we are home. Having grown up going to temple, there are some interesting traditions that are followed in Christianity that I have observed. One that I have discussed with Rebecca before is the reciting of the Lord’s Prayer. I have always wondered why it doesn’t “flow” well like most prayers that you hear. It seems to be “jumbled” together at points. I was discussing this with a friend not too long ago, and she got me a copy of the Lord’s Prayer in Aramaic. (I guess that is the original language it was written in.) Anyways, I don’t speak Aramaic, so thankfully it came with the original transliteration and translation from the Peshitta (Syriac-Aramaic version) by Neil Douglas-Klotz.
(The text appearing in parenthesis is the modern version.)
1). O Birther! Father-Mother of the Cosmos, you create all that moves in light.
(Our Father in Heaven.)
2). Focus your light within us – make it useful: as the rays of a beacon show the way.
(Hallowed be your name.)
3). Create your reign of unity now – through our fiery hearts and willing hands.
(Your kingdom come.)
4). Your one desire then acts with ours, as in all light, so in all forms.
(Your will be done, on Earth as in Heaven.)
5). Grant what we need each day in bread and insight: subsistence for the call of growing life.
(Give us this day our daily bread.)
6). Loose the cords of mistakes binding us, as we release the strands we hold of other’s guilt.
(Forgive us our sins as we forgive those who sin against us.)
7). Don’t let surface things delude us.
(Save us from the time of trial.)
8). But free us from what holds us back [from our true purpose.]
(And deliver us from Evil.)
9). From you is born all ruling will, the power and the life to do, the song that beautifies all, from age to age it renews.
(For the kingdom, the Power, and the Glory are yours, now and forever.)
10). Truly – power to these statements may they be the source from which all my actions grow. Sealed in trust and faith. Amen.
(Amen.)
I don’t know why I decided to include this today.....don’t look for any hidden meaning. I just found it interesting. I see it as very analogous of how we sometimes say and do things out of habit or training, without ever taking the time to think about what they mean or where they came from.
Thursday, May 29, 2003 9:24 PM CDT
WOW! Has it really been since Sunday that I’ve updated the page? How come nobody out there in computerland mentioned it? Afraid to feel the wrath of Scott? Am I that unapproachable? (More like everyone’s been busy with their own lives…LOL.)
Well, for anyone out there waiting for an update….here goes.
Zachary’s cold has gotten somewhat better. He no longer has the cough. So, he no longer has needed the cough medicine at all! We are not giving him a decongestant, we’re trying to let this thing leave his body through snot! (Plus, he tends to get too dry from those anyways.)
Zachary has been playing soccer in a league for homebound children. Wednesday was the last day, he got a nice trophy. I was a little leery about letting him play while he still had the sniffles, but I decided to throw the rule book out of the window for a day or two. This Saturday Zachary has his bowling league in the morning, and then the P.O.S.T. bowling party in the afternoon. He’ll probably want to do laser bowling Saturday night too……when does it end? (Hopefully never!)
I tried to get a last minute appointment with our family psychologist today…..she was of course booked solid. It’s not like I needed to be talked down off of any towers or anything, I just am having cranial overload with work, home, chemo next week, insurance, money, etc. I’ll figure it all out.
Next week while Zachary is getting chemo, one of our friends from WPB is going to be living the nightmare of another surgical procedure for their son Cameron. We pray this is going to be a minor bump in the road to recovery. Please keep this wonderful family in your thoughts and prayers.
Scott
P.S. Many of you have probably seen this before….but I got a good chuckle out of it, so I thought I’d share it here for anyone that cares to read it:
SUBJECT: ENGLISH TO BE EUROPE’S OFFICIAL LANGUAGE
The European Union commissioners have announced that an agreement has been reached to adopt English as the preferred language for European communications, rather than German, which was the other possibility. As part of the negotiations, the British government conceded that English spelling had some room for improvement and has accepted a five-year phased plan for what will be known as Euroenglish, or (Euro for short.)
In the first year, “s” will be used instead of the soft “c”.
Sertainly, sivil servants will resieve this news with joy. Also, the hard “c” will be replaced with “k”. Not only will this klear up konfusion, but typewriters kan have one less letter.
There will be growing publik enthusiasm in the sekond year, when the troublesome “ph” will be replaced by “f”. This will make words like “fotograf” 20 persent shorter.
In the third year, publik akseptanse of the new spelling kan be expekted to reach the stage where more komplikated changes are possible. Governments will enkorage the removal of double letters, which have always ben a deterent to akurate speling. Also, al wil agre that the horible mes of silent “e”s in the languag is disgrasful, and they would go.
By the fourth year, peopl wil be reseptiv to steps such as replasing “th” by “z” and “w” by “v”.
During ze fifz year, se unesesary “o” kan be dropd from vords kontaining “ou”, and similar changes vud of kors be aplid to ozer kombinations of letters.
Und after ze fifz yer, ve vil al be speking German like zey vunted in ze forst place!!!
Sunday, May 25, 2003 8:25 PM CDT
Thought of the day: IF IT ISN’T BROKEN….DON’T FIX IT!
Zachary has been enduring his cold with the assistance of a 12-hour cough suppressant. The only downside to this medicine is that it has no decongestant, so he is blowing his nose all day long. In my infinite wisdom, I decided to try and give him a break from the runny nose by having him take a chewable Benadryl today for our friend’s Indy 500 party. Well, it wiped him out. He was lethargic and cranky, not wanting to stay all day like we normally would do. Adding to his misery was my ban on swimming. All of the other children were playing in the pool having a great time, and Zachary’s mean old nasty father would only let him dangle his feet in the water. He did brighten up when his driver came in third….that coupled with the $30.00 prize livened him up a bit. Once we got into the car, he was asleep in less than two minutes as we pulled away. It took me a few nudges to wake him up when we got home ten minutes later. The three of us took a power nap for a couple of hours.
Scott
***Special bonus story***
Once upon a time there was a state called Florida. In this fictitious state, there were many families that had children who were stricken with cancer. Some of these families were fortunate enough to be able to continue to afford insurance through their jobs and businesses. Sadly though, many of the families were unable to afford the high cost of co-pays or premiums that can come with insurance. Sometimes a couple would have to split their duties, with one parent becoming the primary care giver, and the other maintaining the income for the family. In other families, sometimes there only would be one parent to carry both duties. If one of these parents had to give up their job to care for their child, they would lose their insurance and be offered COBRA insurance at a very expensive rate. In most cases, the families in all of these scenarios would forgo the expensive insurance and settle for state assistance.
The magical state of Florida was prepared for these families. They knew that tragedy could strike, so they had a plan. They would have programs to offer that were based on a families income that would provide insurance to cover the high cost of cancer treatments. Sadly though, the state didn’t put a whole lot of thought into their plan. When a child gets diagnosed with cancer, several things will almost always happen.
1). The family will be hit with an amazing amount of financial burdens.
2). The child will require medical experts from many fields, including quite possibly some from out of state.
3). Decisions about treatments will have to be made sooner, rather than later.
4). Family members will have more than enough stress in their lives.
Keeping all of this in mind, this is what the bright state of Florida decided to do. They would allow families to go through the stress of losing their primary (better) insurance, and going onto state assistance through one of their programs. This was a bad plan on only two fronts……1). It cost the state millions of dollars each year to pay for treatments for these children, and 2). It forced the families to accept inferior medical coverage that could prove to be fatal in the event the family needed to quickly get to another state for a treatment that wasn’t available in Florida. (Florida can be very, very slow in approving out of state treatments.) Other than that, it was a great plan! In addition to the aforementioned downside, there would be the added stress of making the families jump through hoops with paperwork, evaluations, phone calls, and threatening letters on a regular basis.
All of this went on for many, many years until one day, a mild mannered father of a boy named Zman was backed into a corner. It seems that this father had somehow found a way to keep his son on the better, more expensive insurance throughout his battle with cancer. This proved to be quite difficult, with many expenses being thrust upon the family that insurance would not cover. Zman made it into remission, but the COBRA payments became too high for this family, so they buckled and tried to get their son on state assistance. At that time, the state made the one bright decision in an otherwise dark and dismal history. They offered to pay Zman’s portion of the COBRA, thus allowing the family to maintain the better insurance, while at the same time capping out the states expenditure at the cost of the monthly premium. Shortly after making that decision, Zman relapsed. His medical bills throughout the rest of that year would reach $500,000.00, while the state had spent a mere $3,500.00 to keep that coverage active. Almost a year to the day after relapse, the COBRA folks decided to raise their rates by 50%. The father immediately contacted the state folks to get the additional amount paid so he could maintain coverage for his son. Sadly, the state refused. It seems that when making the original decision to help, the state was unaware that Zman had secondary insurance through public assistance. That policy was only being tapped for minor expenses, co-pays, a few prescriptions, etc. The bulk of the expense was going to the folks at COBRA. The father was confused. He asked the state people, “Are you saying that you want to turn back the clock and recant your decision to pay those $3,500.00 in premiums? Because if so, then I want to recant my decision to be able to afford COBRA. That would have put Zman on FULL state assistance, costing you $500,000.00!" The local office was not going to be fooled by this obviously slick hustler. They quite cleverly replied with, “Hey there smarty. That $500,000.00 wouldn’t have come out of our local office’s budget…that’s state and federal money. The $3,500.00 DOES come out of our local budget. And not only that, if Zman HAD gone on full state assistance, our local office would be compensated by the state to maintain and monitor his case.” The father was stunned. He had connived and planned for years. First, he had to be lucky enough to have a child diagnosed with a life-threatening illness. Then he needed to have his wife lose her job, forcing the family to get creative in the way they pay bills. After that, he had to trick everyone, so he could find a way to give his son coverage that would be inferior, while at the same time cost the state hundreds of thousands of dollars. NOT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
In the end, this is what really happened. The father looked at the situation and said this. “When a child gets diagnosed with cancer, (or any other life-threatening illness) why doesn’t the state jump right in and make sure the family is able to maintain their insurance. Even if the insured parent loses their job and they go on COBRA (like us), the state is still way ahead of the game financially if they simple pay the monthly premium, instead of paying the actual medical bills. Even if they state had to pony up and pay for non-covered items, co-pays, etc, they would still be hundreds of thousands of dollars ahead with each and every child. You do the math. COBRA is only good for 18 months, unless you are able to get the 9-month extension. But, the majority of the expense for these children occurs in the first 18 months to 2 years anyways. They either make it into remission or die. In the mean time, the family is able to use the “better” insurance, allowing them the flexibility to travel out of state if needed. Even if the family hits their lifetime cap for the child on the private insurance, that buys them time without having to do battle with the state nightmare, and it saves the state a lot of money. (Most caps are in the range of $1,000,000.00.)
How much does the average state worker make? Paying the premiums and incidentals for one child like Zman for one year could save the state enough to pay about ten employees $40,000.00/year. These ten specialists could be positioned around the state, doing nothing else except helping families like ours maintain their insurance. If each employee only helped one family per year, they would generate between $400,000.00 and $900,000.00 in savings for the state, depending on the diagnosis and treatment of the child. Most of you reading this have walked in our shoes. You know what the expenses are like. Do the math. In Zachary’s first 12 months of diagnosis, he underwent 12 full weeks of in-patient chemotherapy, another 6 weeks of in-patient care for fevers, innumerable blood transfusions, countless scans and x-rays, major abdominal surgery, harvesting of stem cells, a stem cell bone marrow transplant, two weeks of radiation, and countless doctor’s office visits. I don’t even know how much that first year added up to, but a rough guess would be close to $1,000,000.00!
We always paid our insurance premiums on time and in full! The insurance companies make their money! They have actuary tables that factor in a certain number of children like Zman. Why should they reap the benefits of our premiums, and then be able to dump us when the child becomes a burden to them? Maybe I am just a dreamer, but the solution seems obvious to me. The state could be the hero!
PAY OUT A FRACTION OF THE MONEY YOU ARE SPENDING NOW, AND HELP FAMILIES MAINTAIN BETTER COVERAGE FOR THEIR CHILD.
The end.
Saturday, May 24, 2003 10:05 PM CDT
Medical update:
Zachary still has his cold. We keep him on a cough suppressant, but he is very stuffed up and blowing his nose all day. Despite his cold, he has remained active. Today we went to see the new movie Bruce Almighty. The three of us were laughing so hard we had tears in our eyes……it is a very funny movie! We gave it six thumbs up. Tonight we went to laser bowling with Eric, Jennifer, Lars and Sarah. The kids love that on Saturday nights….it’s becoming a regular thing.
Tomorrow we are spending the day with very good friends that have an Indy 500 party every year. Food, friends, and fun……just the medicine for us right now.
Several journal entries ago I wrote about having an idea for saving the state millions of dollars while at the same time giving our children better medical care for their cancer treatments. I sent the letter to one of our congressman. His office called last week and asked for permission to forward it to some of the state representatives to review. Today, the representative that covers this area called to talk about that letter. She was very interested in my idea and showed genuine concern about our dilemma. As luck would have it, she sits on one of the medical committees for the state, so she will be knocking on some doors and making some phone calls to try and get some results. Time will tell. Maybe this blind squirrel finally found an acorn! On a related note, I had been waiting to hear from the local office of Children’s Medical Services about the possibility of them continuing to help us maintain our COBRA insurance coverage. I had worked my way up the ranks of their office, finally reaching the director. She had informed me that their hands were tied and that they could not help. I mentioned my idea and that I would be taking it up the ladder on the state level. This prompted her to make a call to her supervisor in Tallahassee, and on Friday, they agreed to help us out throughout the rest of this year. Next year, the conversion policy will kick in, so the rates will go down substantially. The bottom line is, I didn’t give up and I actually got some good results. It is a shame that I have had to put so much energy into chasing after these folks. The system is so flawed that I get frustrated just thinking about it. How is it that some putz like me is just coming up with this idea now? Families have been going through this for many years. Another riddle for the masses.
I hope everyone is enjoying the holiday weekend. I know many families are having to endure tough times with their child’s illness. As always, our thoughts and prayers are with all of our friends in this battle.
Scott
Thursday, May 22, 2003 6:18 PM CDT
Medical update:
Zachary still has a cold……..ONLY a cold! We saw the pediatrician today and he was pleased to “see Zachary looking so good.” He felt that this little bump in the road is nothing to worry about. Zachary’s ears, nose and throat all look good, his lungs and heart sound good, and he has not had any fevers. His coughing and sneezing is driving him nuts, but we'll all get over it.
It was good to hear some “normal” news after the urine test debacle.
Scott
Wednesday, May 21, 2003 5:15 PM CDT
EVERYTHING I WROTE IN YESTERDAY’S JOURNAL ENTRY STILL HOLDS TRUE FOR TODAY….ONLY NOW THAT I’VE HAD SOME MORE TIME TO STEW OVER IT……IT SUCKS EVEN MORE.
AND……IF THAT GARBAGE ISN’T ENOUGH TO REALLY DRIVE ME APE$HIT….….ZACHARY HAS HAD GROIN PAIN FOR TWO DAYS NOW, AND TODAY HE WOKE UP VERY CONGESTED. I’VE GOT AN APPOINTMENT SCHEDULED WITH THE LOCAL PEDIATRICIAN FOR TOMORROW….MAYBE HE’LL IMPROVE OVER NIGHT.
FUN AND GAMES EACH AND EVERY DAY!
Scott
Tuesday, May 20, 2003 9:24 PM CDT
WAITING FOR RESULTS SUCKS!
GETTING BAD RESULTS SUCKS!
FINDING OUT THE SAMPLE WAS SENT TO THE WRONG LAB SUCKS!
FINDING OUT THE HOSPITAL IS TO BLAME FOR SENDING THE SAMPLE TO THE WRONG LAB SUCKS!
REALIZING THAT YOUR RESULTS ARE USELESS BECAUSE THEY WERE SENT TO A DIFFERENT LAB SUCKS!
KNOWING THAT YOU ARE HELPLESS TO PLOT A COURSE OF ACTION FOR YOUR CHILD BECAUSE YOU HAVE NO USEFUL RESULTS SUCKS!
RELYING ON HOSPITALS TO GET “IT” RIGHT, AND THEN BEING LET DOWN SUCKS!
HAVING TO WAIT AT LEAST ANOTHER WEEK BEFORE GETTING NEW RESULTS SUCKS!
NOT KNOWING WHAT IS HAPPENING TO YOUR CHILD BECAUSE OF USELESS REUSLTS SUCKS!
IT ALL SUCKS!
I’M SICK OF IT ALL!
CANCER SUCKS!
SCOTT
P.S. There is a photo of the new t-shirt in Zachary’s album….buy one…don’t buy one…I just don’t care anymore.
Sunday, May 18, 2003 6:31 PM CDT
It has been 1158 days since Zachary’s original diagnosis. Why did I bother to count? Obsessive-compulsive disorder maybe….who knows?
Zachary had fun with Lars and Sarah at the laser bowling last night. I was picked for the “goofy” bowling contest. The tallest person from each team had to lie down on their belly, and roll the ball down the lane trying to knock down some pins. After three rounds of this, all but three people were eliminated. The last three got one more shot, and whoever knocked down the most pins, won. I rolled a gutter ball on my first attempt. I should have used a heavier ball…(less likely to fade or err with.) Oh well. I’ll know for next time.
After church today we went out for brunch. Zachary ordered some freedom toast (I couldn’t resist that one) and before eating a bite, he went into the bathroom and got sick. We came home and had him rest for a bit. He got nauseous once more but didn’t get sick. By dinnertime he was fine. Who knows? Certainly not me.
On occasion in the past I have asked for your prayers for some of the other children that we know. Today I am asking for help with two little boys. Cam is one of Zachary’s buddies from the oncology floor. Even though he is only 2 ½ years old, Zachary has always loved playing with him. His recent trip to Duke for a checkup revealed a spot on one of his lungs. The local surgeon will review the information to help our friends come up with a plan. We are praying that this is NOT the neuroblastoma returning! The other little boy is Jalen. We don’t know their family well, but Rebecca got to meet his parents at Quantum House three weeks ago, and this past Sunday while we were visiting the floor, we got to meet Jalen. His web page from two days ago indicates that they will be taking him home this week to work with hospice. Prayers for these families would be greatly appreciated.
I’ve written about perspective before. We are faced with a non-curable cancer, however, we have a son that is feeling great right now and staying active. He is not laid up in a hospital bed, fighting for more time. Jalen is! Cam is healthy and feeling great as well, but his family has been slapped with more of the unknown. I can vividly remember those times when we got back scary news. Erik and Michelle are good people and cherished friends that deserve a break from this madness.
Scott
Saturday, May 17, 2003 5:25 PM CDT
Home at last!
Yesterday was an emotional day. We got home around 1pm and rested for a while. At 5pm we went to our local high school where they were holding the annual ACS relay for life. The turnout this year was great. (Fortunately and unfortunately.) I’m glad to see so many people out raising money and awareness for this charity. However, I am saddened at the growing number of families and neighbors that are obviously being impacted by this horrible disease. Zachary, Ty-Michael, Natalie and Megan led the survivor’s walk. That was very emotional for me again this year. I never would have guessed in a million years that Zachary would make it from last year’s relay to this year’s. I know that is a horrible thing to write, but sadly it is true. I videotaped a lot of that first lap, and I took a digital photo, so check out the photo album.
For those of you that have never attended one of these events, the American Cancer Society sponsors the event each year. Organizations form teams that promise to keep at least one team member walking around the high school track all night long. Each group sets up a booth where they can decorate, sell food and drinks, have games, set up tents and have fun. The middle of the field was set up with chairs, music, and people playing volleyball, football and soccer. The kids had a blast. Around the circumference of the field, the ACS sells luminaries. (Bags that have sand and a candle inside. On the outside, the name of someone being honored in survival or memoriam is written. We got one for Robert, Seth, Zachary, and one for the father of a friend that I grew up with in Pittsburgh that just passed away recently. Zachary had just finished his chemotherapy earlier in the day, but he wanted to make several laps around the track during the course of the evening. As we would walk he would make comments about his friends that he misses, sometimes asking questions about how old they would be or how he wishes he could see them. We saw many friends last night, and for that I am thankful. The relay is a very sobering reminder of how large of a toll this disease takes on everyone. After the relay, we had to stop at Target to buy a few things. As Zachary and I were making our way towards the back of the store, a man and his wife commented to Zachary that they had just seen him at the relay. She was evidently a survivor as well. What a small world we live in when you take the time to notice those around you and how much you really have in common.
Today, I golfed in a scramble tournament that one of my friends had invited me to. Zachary had bowling league. His first game he got a 133! He had two strikes in a row, followed by a spare and then a nine. His second game he got a 111. None of the other kids even got over 100, so he was very proud and excited. Tonight we’re going to laser bowling…..just to make sure we get our 5 games of bowling in for the day. Zachary still feels well. He got a little dizzy at dinnertime, but he took some Zofran and felt better right away.
Scott
Thursday, May 15, 2003 6:53 PM CDT
Day 4.
Well, no nausea or vomiting today. That is a good thing….a VERY good thing. Zachary tolerated the chemotherapy today without any major problems. And, I earned my keep as guardian and protector today! There is evidently a new anti-nausea drug that has just come onto the market. The doctor gave an information sheet to the nurse, to give to me. As she was handing it to me, she rattled off some technical terms about how it is specifically used for a small group of chemotherapies that include the one Zachary is on. So, being the anal person that I am, I started to read this sheet. Have you ever tried to read one of these things? They may as well write it all in Russian or Chinese. Anyways, I scan down the list of side effects, and the chart pretty much reads as expected. Small percentages of patients reported one thing or another….but the ones that were on the sugar pill had similar complaints….so you can’t put too much weight into that chart. Then, for no particular reason, I started to read the technical information side that talks about contraindications with other drugs. Now, keep in mind that I’m no doctor. But, after reading a few paragraphs, I started to get the impression that this new drug was great for use with all chemotherapies EXCEPT the small group that included the one Zachary is taking. So, I asked the nurse. She hadn’t actually had a chance to study it; it had been passed on to her. She looked it over and quickly found what I was seeing.... this was no drug that Zachary would ever see while taking his current chemotherapy. Oh well, I guess I got one right for once. (Even a blind squirrel finds an acorn once in awhile.)
Since Zachary was feeling better today, we took him to see the Matrix Reloaded movie. He is a huge Matrix fan and has been waiting to see it. Now, some of you are scratching your heads wondering what kind of sick demented parents take their nine-year old son to an R rated movie. I guess the answer to that is Scott and Rebecca Finestone! The movie was cool. There were lots of great effects and fight scenes. Some of the dialog was a bit mature, but Zachary has promised to explain it all to me later. He only had to cover his eyes for about two minutes…..some kissing and rolling around in bed….no blatant nudity or anything…..so don’t worry…we haven’t completely corrupted his mind yet.
Tomorrow we check out of the Quantum House after we finish chemotherapy. Once we get home, we’ll have a whole couple of hours to relax before heading off to our local high school for the annual relay for life. Last year, Zachary and his friend Ty-Michael led the survivors lap. I expect the same this year. Of course, they played that song from Enja (spelling?) and had us all crying….but what fun is a cancer gathering if you don’t get to ball your eyes out? I’ll be bringing the video camera and digital camera, so there will be pictures up in his guestbook this weekend.
Scott
Wednesday, May 14, 2003 11:38 AM CDT
Day 3.
Just when we thought it was safe to go back in the water……
Zachary got sick three times this morning. Twice during chemotherapy and once in the front yard of the Quantum House after returning from chemotherapy. I really hate this. He has been feeling so good lately…and then all of sudden he is vomiting up acid and dry heaving while trying to catch a breath. CANCER SUCKS! (Just a reminder in case anyone forgot.)
We have been invited out to dinner by a good friend. I hope Zachary will be well enough to enjoy that. He doesn’t like being cooped up all evening here. Why are we suddenly having problems with this chemotherapy? Zachary has been using this same dose of this same drug since August of 2002 without incident. Why now? This is exactly the kind of think has him questioning whether or not to continue with treatments. He has gotten used to the routine and inconvenience of chemotherapy one week out of three, and now he has the added worry of constant nausea. Why now?
Maybe we have “used up” our blessing of being able to do this chemotherapy on an out-patient basis. There are many children that don’t have that luxury. Maybe this is a sign that we are reaching a turning point in how we will attack this monster. (Maybe I’m just paranoid and sick of the constant battles that seem to be popping up around me.)
Maybe it would help if we all prayed for the Cubs to win the World Series. (What? Has Scott gone completely off of the deep end?) Bear with me here. See, I hate baseball. And, I really don’t care about the Cubs. In fact, I couldn’t even name one player on the team. But I’ve seen enough movies to know that they haven’t won a series in a long long time. So, maybe if they finally win one, all of those Cubs fans that have been using their precious prayers towards baseball will “free up” they’re prayers for other things….like a cure for cancer. (Twisted logic?) OK, I’ll give you that……but you never know. There have got to be a lot of prayers that are bombarding the heavens on a daily basis….we need to eliminate the ones that are interfering with what WE want! (Selfish?) OH yeah… it’s selfish….but remember….It’s all about me baby…it’s all about me.
Scott
Tuesday, May 13, 2003 1:00 PM CDT
Hello out there! I hope everyone is doing well.
Medical News:
Zachary started chemotherapy yesterday without much fanfare. He is taking his Marinol and feeling just fine. Other than a good case of the munchies, we have had no problems yet. Today he woke up without a little bit of a hangover, but that is to be expected. As long as the nausea stays away, we are happy. Today’s chemotherapy round went well also. He is playing quietly in the room as I write this entry.
I just got done faxing a four page letter to my Congressman. I know, I know, you’re all going to say, “How many battles can you possibly fight at one time?” Well, I guess the answer is, “As many as it takes!”
This whole insurance thing has my mind racing while searching for a solution. I believe I’ve found one. I stole the idea from my father who had similar thoughts about 25 years ago for an unrelated yet similar problem in the medical industry. I’m not going to go into details until I start to get answers, but suffice it say, I believe I can help families maintain infinitely better insurance coverage for their critically ill child while at the same time saving the State millions of dollars. (Ok, ok…..it sounds like another one of my fantasies….but give me the benefit of the doubt on this one for the time being. Maybe I’m not as dumb as I look.) Besides, what do all of you care if I make an idiot of myself..
……..again?
Since Zachary is feeling ok, we are heading down to the Mathis’s to let the kids play for a little while. I know I’ve said it before like 3,298 times, but we are very lucky to have the Mathis and Charlton families close by to keep our spirits up while dealing with this chemotherapy monster.
Scott
Saturday, May 10, 2003 7:06 PM CDT
Where did I leave off? (I guess I could have looked back at the last entry to see what I wrote about.) (It must have been quite prophetic if I can’t remember what I wrote a mere 48 hours earlier.)
Oh well, I guess I’ll just have to wing it.
Medical News:
Zachary is still feeling quite good. Last night Matthew Charlton came up for a sleep over, and we went to laser bowling. My partner Eric, his wife Jennifer, and their two children, Lars and Sarah met us there. Laser bowling is fun……lights, music, and special games. (At this point in the journal entry I would like to go on the record officially as saying this: 1). Yes! Zachary (age 9) and Lars (age 7) almost beat me in the second game. 2). No! I was not messing around….I was trying! 3). Lars and I were tied until the ninth frame, and Zachary had me by 15 points when I stepped up in the tenth. 4). If I hadn’t gotten a strike, my first for the night, I would have lost to both of them.)
Now, many you loyal fans are probably wondering why I would admit to such an apparently embarrassing anecdote. Well, I learned something a long time ago while watching a good movie, (Patriot Games), come out with the facts and own them early on….it doesn’t give the people that are trying to make you look foolish any where to go with their comments. (Also, it helps that we’re talking about a grown man that wears female bunny suits at Easter time…..how much pride can the man really have?)
The bottom line here is that the kids all had fun! Eric and I had fun bowling too. Rebecca, Jennifer and Sarah were great at cheering us on. (No, I did NOT prohibit my wife from bowling…she chooses not to bowl on her own.)
Zachary started his bowling league today. It will be every Saturday for fourteen weeks. They are very flexible with the schedule, so if we are unable to attend due to illness or whatever, Zachary can make up the day afterwards.
Tomorrow is Mother’s Day in case you live under a rock or don’t read the papers or don’t see the thousands of pickup trucks on corners selling flowers with signs that say “Mother’s Day” or haven’t seen the hundreds of commercials on TV……(you get the picture.)
HAPPY MOTHER’S DAY TO ALL OF THE MOMS OUT THERE!
All of the moms that I have met over these past 40 years deserve the accolades that come with a Mother’s Day celebration. I hope all of your families treat you to a day of rest and relaxation! I thought about listing the first names of all of the moms out there that come to mind, but if I forgot one……I would never live it down.
Tomorrow at church Zachary will be doing the candle lighting that kicks off the service. My folks are coming down from Vero Beach to join us….they haven’t seen our church yet so it will be nice. I will be videotaping the event....not so much to have it on tape....but mainly to hide my face so everyone isn't staring at my tears....what a sap I am. Afterwards we are going out for a Mother’s Day lunch, and then we are heading down to WPB to get ready for another week of chemotherapy. We will be attending a BBQ with the Charlton family tomorrow evening for Mother’s day…..more bocce ball and food.
I have decided that I will stay down with Rebecca and Zachary all week just in case there are any glitches like last time. Zachary will be taking a medicine for nausea that he hasn’t had since August, so I want to be there to make sure he is ok. Financially this is probably not the smart move for us….but psychologically, it is the ONLY move. I will be updating the page from Quantum as usual.
Scott
Thursday, May 8, 2003 7:01 PM CDT
Once again I find myself impressed with the Zman!
We got back the results from the FCAT today. (For those of you that don’t live in Florida, our esteemed politicians passed legislation that requires all third graders to achieve at least a level 2 out of 5 in both reading and math to graduate to the fourth grade.)
Zachary got a 3 in both areas! He scored above the national average in both areas as well! This all from a boy that has spent one week out of every three getting chemotherapy since school started. When we were home, he wasn’t always able to meet with his homebound teacher. Sometimes our schedules didn’t match up, and sometimes she was sick and didn’t want to risk exposing Zachary to any bugs. The bottom line here is, Rebecca and Zachary worked hard for this, and they deserve the credit.
I will be praying extra hard (if that is possible) for the Protocel to rid my son of cancer. It would be surreal for me to be sending him off to the fourth grade in August.
No matter what happens, I am proud of the way he has worked to achieve this goal. Zachary’s good friend Mitchell from Boynton Beach also passed his FCAT. He has been on homebound while being treated for leukemia. These kids are amazing!
I keep thinking back to all of the wonderful experiences that we have been able to provide for Zachary while he has endured the constant medical testing and treatments. I know I’ve said it before, but we’ve been trying to provide the best quality of life while trying to keep him grounded in the fundamentals of being a nine-year old. We also have been trying to keep the trips, hockey games and special events in his life to balance out the hardships that he has endured.
Just when I thought I had Zachary all figured out, he surprises me again. What a great son!
Scott
Wednesday, May 7, 2003 5:49 PM CDT
For those of you that don’t venture into the guest book area, you have missed a posting by Bo, the father of one of Zachary’s best friends. He posted in response to my journal entry from yesterday. In his entry, he makes a very disturbing accusation…..that I was a Mouseketeer in my early years. A MOUSEKETEER!!! A MOUSEKETEER!!! (You put on mouse ears a few hundred times and you’re labeled for life! Hmmmph.)
Rebecca and Zachary are safely home now. They had a blast at EPCOT yesterday, and last night they went to the Magic Kingdom to see the fireworks and parade. (There are two new photos on the web page from the trip.)
I have Zachary’s commercial on DVD now. If only I could figure out how to attach it to the page for everyone. Can it be emailed? If so, I’ll gladly email it to anyone who has an interest. Let me know how, and where.
Zachary got a signed 8.5 x 11 photo from Kyle Petty yesterday. It made it’s way into his book of letters and photos.
We received a really nice thank you note from the sorority that sponsored the bowl-a-thon. They were very thankful for the team of friends that Zachary had with him that day. They also were very proud to announce that their efforts amounted to over $2,000.00. Great job to everyone, and thank you sponsors!!!!!!!!!
Zachary remains to feel great. We’ve got another four days at home before he needs to return to WPB for another week of chemotherapy.
Scott
Tuesday, May 6, 2003 7:37 PM CDT
I am home from the wonderful world of Mickey. Rebecca and Zachary will return tomorrow. All else being equal, if one more person told me to have a “magical day,” I’d have purchased a rifle and climbed the nearest tower!
(Just kidding)
The majority of the folks up there in Orlando were great. We had a really nice time. We really didn’t spend a whole lot of time in the parks. Most of our time was with family. I got to spend a lot with my niece and nephew, which was really nice. Zachary had a ton of fun, playing with his cousins, swimming, and just being a kid.
We’re home until Sunday when we return to WPB for another round of chemotherapy. I’m not sure whether or not I will be able to stay down in WPB with Rebecca and Zachary all week. I’m really nervous about how well he will tolerate the chemo after the fiasco of three weeks ago. I guess I’ll make a decision when the time comes. (Anyone have a coin I can flip?……I’m burnt out on making decisions.)
Scott
Friday, May 2, 2003 10:54 AM CDT
Medical News:
Zachary still feels wonderful. He is bowling today with Rebecca. Tonight we are going to see the X-men2 premiere. Tomorrow we’re off to Orlando to spend a few days with my younger brother and his family.
Most of you know us well, or have followed this page for long enough to know about the camp that Zachary has gone to two years in a row. Boggy Creek Gang Camp is in Eustis, Florida. We have gone there four times for family cancer weekends, and Zachary will be going for his third week of summer camp this June. During these events, there are always photographers taking pictures of the families and kids for all sorts of publicity tools that help promote the camp and raise funds. Last summer there was an organization at Zachary’s summer session that was putting together photos for a new camp that will opening up in North Carolina very soon. Richard and Kyle Petty (the racers) have been working with Paul Newman (who is one of the founders of Boggy Creek) to develop a new camp to service the Carolina’s, Virginia, and Georgia areas. It will be just like Boggy Creek, it will cater to children with life threatening illnesses. The camp is going to be called Victory Junction Gang Camp and it will have a racing theme. The camp recently notified us that they had a photo of Zachary that they wanted to use in their advertising. We obviously agreed! Any time we can help an organization that does work like this, we jump on it. The Goodies Headache Powder Company is one of the founding sponsors. They have a television commercial that will be running nationally promoting the camp and their product. The commercial shows Richard and Kyle Petty talking about the camp. There are photos of children doing camp activities and at the end, Richard Petty holds up a package of Goodies Powder and says, “….so remember, every time you buy one of these, you help one of these.” At that point a photo of Zachary giving two thumbs up and smiling from ear to ear fills your screen. They are also including that photo in their brochure.
We are very excited for the areas that will be serviced by this new camp. We know from experience how many wonderful memories we have taken from Boggy Creek. They have a winning concept that truly benefits everyone that participates in their events.
A friend of the family has been nice enough to transfer the VHS commercial onto a DVD and CD for me. If anyone out there knows how I can put a link to it on this page, I will gladly do that so everyone can see the famous Zman!
Scott
P.S. Zachary is up to over 75 points on his accelerated reader. That earned him a special pin that shows he has a love for books and reading!
Wednesday, April 30, 2003 8:09 PM CDT
THE PLOT THICKENS!!!!!!
I’m too tired to go into great amounts of detail recapping the significance of urine results and how it all works….I will give you the basics….if you want more details, either look back in my journal entries, ask another parent of a neuroblastoma child, go to medical school, or call me.
We test Zachary’s urine every time we start a round of chemotherapy. We are specifically looking at two levels. The HVA and the VMA. These are specific levels that are a useful tool in monitoring levels of cancer activity in neuroblastoma patients. It is NOT a foolproof – 100% perfect tool. However, once it has been determined to be useful in a child, it usually remains that way throughout their treatment. In other words, we’ve been using this test with good accuracy since February of 2002, so there is no reason to start doubting it now.
You may remember that many of the Protocel patients experience an increase in their marker levels once the cancer cells start to deteriorate and leave the body. This increase is usually short-lived, and it is followed by a drastic drop in marker levels.
Zachary’s last urine test revealed the following levels:
HVA – 39.3 (normal is 1.1-12.0)
VMA – 16.1 (normal is 1.4-5.1)
Now his levels are as follows:
HVA – 26.0
VMA – 11.2
As you can see, this is quite a dramatic decrease. 34% on one and 30% on the other. They are both still well above the “normal” range, but you must keep in mind that those ranges are dictated by age. The cutoff for Zachary’s age range is nine, (which he just turned in March.) When he was eight, (two months ago,) the range allowed for a much higher level in both markers. Also, these current levels are on a par with where he was three rounds of chemo ago, before he started to climb to those high levels.
(Question of the day.)
WHAT DOES IT ALL MEAN?
Well, no matter how you slice it, it is good news. Regardless of what is going on in our little man’s body, the levels have dropped dramatically from the dangerous highs that usually indicate a VERY active disease. We are now back down to levels that had Zachary enjoying great quality of life. Obviously, we would love for another great drop three weeks from now. If that were to happen, I would schedule a bone marrow test and an MIBG scan to see what is going on in there.
It is way too early to celebrate any victories. We are still looking at levels that indicate presence of disease. Hopefully this presence is neuroblastoma cells running from Zachary’s body at great speeds to escape certain death from the Protocel!
Scott
Tuesday, April 29, 2003 5:52 PM CDT
Thinking back over all of my journal entries, I can’t remember ever having taken the time to brag about Zachary’s schoolwork or report cards. When doctors tell you your child has a non-curable cancer, you tend to prioritize life’s activities into an order that might not coincide with that of mainstream America. (In other words……why make the kid study so much if his days might be limited?) Finding the balance between keeping him grounded and not sucking up all of his quality time with schoolwork has always been a fun and joyful game. NOT!
Then, all of sudden you find hope from a non-traditional medical source, and you start to allow yourself to look into the future and NOT see yourself visiting your child’s grave. It may be a dream right now, but it’s a dream I’m gonna hold onto if you don’t mind.
Through all of this though, Rebecca has maintained an admirable level of order in Zachary’s studies. She has always encouraged him to keep up with schoolwork whenever he has been well enough to participate. Even though he has not attended school for an entire year, he still has been graduated to the next level each of the past three years. (The older they get, the harder it is to accomplish this with a homebound child.) Anyways, we just got Zachary’s latest report card. It is more in the form of a letter, and I would like to share it with all of you!
REPORT CARD OF ZACHARY FINESTONE
Zachary is a third grader receiving homebound services as he battles cancer every third week. Zachary must travel to West Palm Beach, where he stays to receive chemotherapy treatments. When home, he receives homebound services in the areas of reading and math on an average of 3 hours per week.
READING: Zachary has been working in the same reading series, Scott Foresman, as his third grade peers at Jensen Beach Elementary. He reads the stories from the anthology as well as the Leveled Readers that coincide with each story. Since Zachary has a good grasp on word attack strategies, the focus during reading sessions has been on vocabulary, comprehension and fluency. Zachary has completed two full units in the Scott Foresman Reading Series including the independent completion of the Unit Tests. With twenty-eight grades, Zachary has achieved an 89% average.
Zachary has also participated in the Accelerated Reader Program and has earned 66.9 points. He has completed these AR books utilizing all three recommended methods of reading, independent, reading with someone as well as being read to. His average Book Level is 3.6 (Third Grade Sixth Month) and he maintained an average of 93.5%.
Results: Zachary has earned an A in the academic area of Reading.
SPELLING: Zachary has completed some of the spelling lessons from the Scott Foresman Reading Series. He achieved an 85 average with ten grades.
Results: Zachary earned a B in Spelling.
MATH: Zachary has also been working from the same math series as his third grade peers, Silver Burdett Ginn. He has worked on computation skills in the areas of addition, subtraction and multiplication. Addition and subtraction included multi-digit computation with and without regrouping, while multiplication focused on the basic facts up to and including 0 through 5. Basic mathematical concepts in numeration, measurement, probability, fractions, multiplication, division, geometry, and data analysis were addressed. Problem solving and operations associated with these concepts and skills were also worked on. With over forty grades, Zachary averaged a 92% in the area of Math. As part of Zachary’s Math program he played computer games such as Math Blaster and Math Munchers and played board games to reinforce basic facts.
Results: Zachary earned an A in Math.
FCAT’s: Zachary completed all sessions of the third grade FCAT tests and we are awaiting the results.
Comments: Although Zachary’s fragile medical condition has impacted the amount of material covered; he has an enthusiastic attitude during instruction and has demonstrated excellence in all areas of his learning. He is truly a joy to work with; I always look forward to his witty sense of humor and his smiling face.
(Puffing out my chest with pride for the hard work of my wife and son!)
Scott
Monday, April 28, 2003 6:18 PM CDT
Where have all of the updates gone? (I guess I got lazy over the weekend.)
Medical News:
Well, Zachary got sick every day that I was at work last week. (Tuesday, Wednesday, Thursday and Friday.) Those last two he got sick three times each day. As soon as he got home and saw me, the vomiting stopped. Hmmmmmmm. Saturday and Sunday he was fine. Today, I got up and saw him in the morning before going to work, as soon as I left, he got sick again. Hmmmmmmmmmmmmmmm (How do you spell psychosomatic?) I’m not saying that the boy needs me, but what the heck is going on while I’m out of the house? Anyways, we gave him some Zofran (anti-nausea medicine) and he has been fine since.
Our weekend:
Saturday was very rainy. Zachary and I went with my partner and his son to the bowling alley and bowled a few games. Sunday we went to church, and then we headed down to WPB. We met our friends the Charlton’s and the Mathis’s for more bowling…and then Rebecca, Zachary and I had to get to the Delray Beach Marriott for an American Cancer Society dinner.
This dinner turned out to be very special. I had no idea what the night was going to be like. I had only heard that it was a benefit to help R.O.C.K. camp. (Reaching Out to Cancer Kids) ACS has been funding more and more projects that involve the children. But this was organized by a group that is celebrating 10 years of fundraising for the ACS. It is called the Nicholas R. Chiera Dinner/Auction Golf/Tennis Classic. They have been raising money for 10 years in memory of their father who passed away from cancer. The Chiera family is an amazing group of people. They have massed an impressive group of sponsors that put together a great event while raising hundreds of thousands of dollars this year. There was a wonderful dinner, a silent auction and a live auction. Several famous athletes were on hand including: Bart Connor, Nadia Comaneci, Mike Eruzione, Bob Beamon, Kathy Turner, Peter Worrell, Chris Wells, and others. These athletes were very approachable by the children, posing for photos and signing autographs. Several of them gave artwork and signed photos that included a private dinner with them. Zachary had a blast. We were sitting with Kyle Pacheco and his family. Kyle was diagnosed shortly after Zachary relapsed last year. We spent many days and nights in the hospital with his family. Kyle, Zachary and Robert would play cards at the end of the hall until the late hours of the night. We were also lucky enough to see our friends, Ty-Michael, Alex, Sierra, Tim and Audra. The Chiera family deserves a lot of credit for their efforts. They have hearts of gold.
Scott
Friday, April 25, 2003 4:09 PM CDT
My family is now home! All is well in the world!
Zachary continued with his vomiting today. Now that chemotherapy is over for the week, I am hopeful that the nausea will end.
For today’s journal entry, I am going to rely on this recent article that was forwarded to us by Ruthie. (Thank you Ruthie! I heard it was coming out…but didn’t know when.)
From The South Florida Business Journal
From the April 11, 2003 print edition.
Study could fuel suits claiming nuclear plants cause cancer
Stephen Van Drake
At age 9, Zachary Finestone fights for his life against cancer that his parents say was caused by emissions from Florida Power & Light's St. Lucie nuclear plant - an allegation the utility vehemently denies. Born in West Palm Beach, the youth lived within 20 miles of the plant's two reactors for at least the first five years of his life, according to a suit filed against FP&L by his parents, Scott and Rebecca. In March 2000, doctors diagnosed Zachary with cancer, which has spread to his bone marrow, spine, hips and head. Scientists also found abnormally high levels of Strontium 90 - a radioactive isotope associated with atmospheric nuclear bomb testing and power plant emissions - in his teeth, according to the suit. The question is whether a study released this week will lead to a wave of similar suits. The study of nearly 500 baby teeth in the region found abnormally high levels of Sr-90, especially in those of children living closer to power plants. "There will be more such suits and they will be successful. It will be like [the] Big Tobacco litigation around the country," said the study's principal author, Ernest Sternglass, a retired radiation physicist who taught at the University of Pittsburgh Medical School. Some of Sternglass' previous studies have been debunked as junk science, but a study in Europe also found problems with nuclear plant emissions. The Finestones' lawyer, Nancy La Vista of Lytal Reiter Clark Fountain & Williams in West Palm Beach, claims that FP&L was negligent for failing to monitor and detect dangerous levels of radioactive emissions, posing a significant public health risk. "The hell we are," FP&L lawyer Al Davis of Miami's Steel Hector & Davis said, summarizing the utility's response. FP&L, which also owns a third plant in Seabrook, N.H., this month moved to dismiss the suit as frivolous. "Based on impermissibly high levels of Sr-90, plaintiffs believe they have sufficiently pled that FP&L exceeds the maximum possible amount of nuclear waste allowed by federal regulation, which is enough to foil FP&L's attempts to kick the case out of court," said Julie H. Littky-Rubin, an appellate lawyer with Lytal Reiter. Sternglass distanced himself and other scientists from any lawsuit, instead warning that the country faces a growing cancer health crisis from nuclear plant emissions - often showing up in drinking water, dairy products and fresh fruit and vegetables. Any food grown 50 to 100 miles downwind from any reactor likely carries increased cancer risks, he said, especially for children, who are more sensitive to radioactive carcinogens. "Children are the proverbial canaries in the mine shaft when it comes to identifying cancer clusters," Sternglass said. People living within 20 miles of FP&L's Turkey Point nuclear plant in Miami-Dade County and its St. Lucie County facility near Fort Pierce face abnormally high cancer risks from low-level Sr-90 nuclear plant emissions, Sternglass and co-principal researcher Jerry Brown of Florida International University said during a news conference Wednesday at Florida International University in Miami. The pair, plus seven other U.S. scientists, released the final report of their decade-long South Florida Baby Teeth and Cancer Case Study, dubbed the Tooth Fairy Project. The study was principally funded with $42 million from Miami's Health Foundation of South Florida, which gained the bulk of its endowment from the sale of Cedars Medical Center of Miami to a for-profit hospital chain. As part of analyzing about 5,000 baby teeth near 14 U.S. nuclear plants, these scientists chemically tested 484 baby teeth in South Florida, mostly from children living within 20 miles of the Turkey Point and St. Lucie plants, according to the report. Sr-90 attaches itself quickly to calcium and can cause bone and blood cancers in children, the study says. The project is the first in-body Sr-90 testing comparing baby teeth from healthy children and those with cancer, Brown said. The United States should follow the example of the United Kingdom and freeze nuclear power plant development and re-evaluate federal regulations, since low-level radioactive emissions pose a much greater public health threat than ever conceived, Sternglass said. "We're connecting the dots that no one wants to connect; this country's original scientific assumptions are wrong," he said, pointing to the 2003 report of the European Committee on Radiation Risk (ECCR). Project scientists also found the farther away people lived from nuclear plants, the less Sr-90 showed up in baby teeth. The Sr-90 levels also increased when nuclear reactors increased their operating capacities from about 60 percent in the 1960s to about 90 percent in the 1990s, Sternglass said. The project also tested Sr-90 levels in drinking water, he said. South Florida, with an average 79 inches of annual rainfall and shallow water tables, puts area residents at high risk, he said, especially since the NRC in 1990 stopped regularly monitoring Sr-90 levels in milk, plants, soil and water. Radioisotopes in the environment from the nuclear reactors will cause 61.6 million cancer deaths worldwide, the ECCR concluded. FP&L: Claims without merit But the nuclear industry flatly rejects the Tooth Fairy Project's charges. "These claims are entirely without merit," said FP&L spokeswoman Pat Davis. "Above-ground weapons testing is likely the source of this [Sr-90 findings in baby teeth and drinking water]," Davis added. Nonsense, Sternglass and Brown countered, noting that atmospheric atomic testing ceased in 1980. Besides, Sr-90 has a half-life of 28 years and in humans, a 10- to 12-year half-life. "There is now substantial evidence that exposure to radioactive releases from nuclear reactors is a significant causal factor of increasing childhood cancer rates and other adverse health effects in southeast Florida," the project's final report says. Preliminary findings debunked When project scientists released preliminary findings of their study in 2001, the Florida Department of Health, the Nuclear Regulatory Commission and scientists from the University of Miami School of Medicine and Harvard University debunked the study as junk science and lacking peer review. "How can others repudiate our final report when we've just released it?" Brown said. In July 2001, Dr. David R. Johnson, the health department's chief environmental epidemiologist, wrote: "There is no quantifiable risk associated with these small traces of Sr-90 in the body, even in infants, virtually all of the environmental Sr-90 is from past nuclear weapons tests rather than power reactors, and no member of the public is receiving more than a trivially small radiation dose of any kind from the operation of nuclear power plants in the U.S." Yet, the department in 1997 identified cancer clustering in St. Lucie County. It tested more than 500 chemicals - except Sr-90 - failing to find its cause, Sternglass and Brown said during interviews. The pair insisted peers have reviewed and approved their study's methods. It is not the first time scientists tested baby teeth for radiation poisoning. The government did this in the 1970s, and various European nations followed suit, Sternglass and Brown said. One of their peers - Dr. Samuel S. Epstein, professor emeritus of environmental and occupation medicine at the University of Illinois at Chicago School of Public health - reviewed the final report. "Given prior evidence of the relationships between childhood cancer and radioactive emissions from 103 aging nuclear power plants in the U.S., and the well-established biological risks of radioactive Sr-90, it is now critical to recognize that radioactive emissions from commercial nuclear power plants pose a grave threat to public health in southeast Florida, and throughout the nation," Epstein wrote on March 26. But as early as 1993, nuclear power plant advocates characterized Sternglass as a constant nuclear power critic armed with an agenda and willing to mold statistical findings to a predisposed agenda. Sternglass' detractors frequently rely on a 1991 study by the National Cancer Institute that shows no general increased risk of death from cancer for people living in 107 U.S. counties adjacent to 62 nuclear facilities. The NCI study is flawed, Sternglass said, because it failed to measure in-body Sr-90 levels and focused on lightly populated counties. If the Tooth Fairy Project's findings prove reliable, what should people do? Filter home water supplies with reverse osmosis, Sternglass said. "This removes almost all Sr-90 from drinking water."
E-mail health care/law writer Stephen Van Drake at
svandrake@bizjournals.com.
© 2003 American City Business Journals Inc.
Thursday, April 24, 2003 8:56 PM CDT
I am sorry for missing a few days. I’ve been busy with work. A lot of traveling!
Medical News:
Well, I wish I had better news about how Zman has been feeling this week. On Tuesday before I left for work, he threw up. Rebecca said he felt fine the rest of the day. Wednesday he threw up again. Today, he threw up twice. The doctor’s office is going to adjust one of his anti-nausea medicines. Hopefully this will do the trick.
It is very frustrating to return to work and leave my family alone, only to get reports of Zachary not feeling well. I remember when he was first diagnosed, I returned to work after the initial week of treatment. It was amazingly frustrating to be on the road, hundreds of miles away, only to hear of problems or bad days. I was on the road the day he was diagnosed. I was on the road the day they told us he relapsed. He has been symptom and pain-free for nine months, and now, he is having a horrible week. He doesn’t complain about it, but when I saw him briefly today, he looked tired and worn out. I’m starting to think that maybe cancer sucks.
Somewhere in the nether regions of my mind I seem to remember having thought that cancer did indeed suck before. But, the days, weeks and months are starting to blur in my memory. So, excuse me if I am repeating an earlier revelation……CANCER SUCKS!!!!!
C A N C E R S U C K S!
C A N C E R S U C K S!
C A N C E R S U C K S!
CANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKS
CANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKSCANCERSUCKS
I put a lot of thought into that previous paragraph. I hope you didn’t just skim through it quickly without taking the time to read every word thoroughly.
My family comes home tomorrow. I am praying that I will get my energetic-feeling good son back!
Scott
Monday, April 21, 2003 8:55 PM CDT
Hello again everyone. Are we finished with the Easter bunny comments yet?
Medical News:
We are now at the Quantum House. Zachary started his chemotherapy today. He did very well at the doctor’s office. This afternoon we went down to the Charlton’s house to celebrate Jeff’s birthday. Zachary got to play with Matthew and Christina, so he had a blast! We had a very nice dinner and then watched American Idol.
Zachary remains to feel great. The doctor examined him thoroughly today and had not problems with the way he looks.
Tomorrow I will head back up to Jensen Beach to work out the remainder of the week. Rebecca and Zachary already have several offers to keep them out of trouble.
Hockey News:
Congratulations to the Tampa Bay Lightning!
For those of you that have followed this page, you will remember that the Lightning were very kind to Zachary and his friend Mitchell at Christmas time. And since then, we have been back twice for hockey games. Two of the players in particular spent a lot of time with the boys after the games, Martin St. Louis and Brad Richards. Last night Martin scored the winning goal in triple overtime against the Washington Capitols to end the best of seven series. It is the first time in their history to advance to the second round of the playoffs! They will continue their journey on Thursday when the open up their seven game series against the New Jersey Devils. We wish them the best of luck.
Scott
P.S. I will try to update from home this week to keep everyone informed with Zman’s progress.
Saturday, April 19, 2003 11:29 AM CDT
Medical News:
Zachary is still playing and acting like a normal nine-year old. He has all of the energy that his friends have…..and then some! We remain hopeful that this trend will continue.
Yesterday we were invited down to WPB to have an Easter buffet and egg hunt with the Charlton family and their friends. The Mathis’s were there too. We played bocce ball, ate great food, and enjoyed wonderful company. I of course shined brightly on the bocce ball course, but that is no surprise to anyone that has seen my physical prowess. (Giggling or laughing out loud will not be permitted at this juncture of the story.)
Today we are relaxing and doing some house cleaning. My folks are coming down for the afternoon to visit with us and to BBQ some steaks. Tomorrow we are invited to the Mathis’s for Easter Sunday dinner. I’ll have to rent a tuxedo, because they are extremely formal folks. It should be another great day with friends before another fun week of chemotherapy.
Those of you that are in the WPB area can help me out this week. I will be unable to stay down in WPB with Rebecca and Zachary for this round of treatment. Insurance premiums have gone through the roof, and we lost the state assistance that was covering Zachary’s portion of that expense. It’s a long story, but basically I can no longer afford to miss that much work. I had decided many months ago that the loss of income was a non-issue compared to the prospect of losing time with my family. Unfortunately, that plan seems to have run its course. I will be able to go down tomorrow with them and stay through Monday for the first round of chemo. Tuesday I will head home and work out the rest of the week. (I am not looking for any sympathy here. There are many parents that we know that have made numerous sacrifices with their work schedules and time spent with their sick child. Most of our friends have more than one child and have to balance the added pressure of keeping life as “normal” as possible for the rest of the family while providing a high level of love and care for the child getting treatments. I am merely relaying our story as it unfolds. I know that I have been lucky to have been able to spend so much time with Zachary while balancing my job.) Anyway, if you are in the WPB area, please keep Rebecca and Zachary in mind if you have time this week to visit. They will be staying at the Quantum House, (561-494-0515) and they will have a car! Zachary usually finishes with chemo before lunchtime. He sometimes takes a nap after chemo because of the effects from the anti-nausea medicine, but after that he is ready to rock and roll!
I noticed that I was ruthlessly betrayed in the guest book with a wildly fictitious tale of me being a prima Dona during my debut as the Easter Bunny. This is what was written:
“Okay, I don't want people to get the wrong idea so I have the "inside" story on the whole bunny deal. I was in Scott's "dressing room" prior to him performing. He had fresh cut flowers throughout the room, a masseuse, an acupuncturist, a hair stylist, make-up woman, a manicurist, two personal assistants, and his manager. He also had imported bottled water, imported chocolate, sushi, and exotic fruit baskets everywhere. I took it as his perks for the bunny gig. There was an ugly scene were Scott refused to go out until all the brown M&M's were removed and he did trash the room after the event but all in all it went well.”
I AM HERE TO SET THE RECORD STRAIGHT!!! I AM AFRAID OF NEEDLES. THERE WAS NO ACUPUNCTURIST ANYWHERE NEAR ME!!!
AND AS FOR THE BROWN M&M THING…….IT’S A WELL KNOW FACT THAT NOT ONLY IS BROWN NOT A PRIMARY COLOR, BUT THE ATOMIC WEIGHT OF THE BROWN ONES IS WAY DIFFERENT THAN THAT OF THE GREEN, YELLOW, BLACK, RED, BLUE AND ORANGE ONES!
(There, that ought to take care of that.)
Scott
Thursday, April 17, 2003 9:00 PM CDT
****NEW DAMAGING PHOTO OF BUNNY FOO FOO IN THE PHOTO ALBUM****
Before I embarrass myself with details of today’s egg hunt, I wanted to address the guest book entry from “A mom having a bad day.” Sometimes my humor and sarcasm don’t translate well enough into the journal entry. Anyone that has read my entries for more than a few days knows how my mind and sense of humor work. I was NOT complaining about wearing the outfit. If you have ever seen my at Boggy Creek, you would know that I sing the crazy songs, wear the crazy outfits, and do anything else that will bring a smile to the children and families going through this. If you are having a bad day, I am truly sorry. I know what those days, weeks, months and even years are like. They can wear you down. My journal entries are an outlet for the frustration that I live with every day while Zachary fights this monster. I never intend to intentionally hurt feelings or make light of another’s pain and suffering. I’m just trying to get through this like everyone else.
(Now that I have climbed down off of my soapbox, I guess it’s time to relay the events of today.)
Obviously my ban on cameras was ignored by everyone. I think some folks brought extra cameras just in case they had a malfunction. You’d have thought that Elvis was going to show up or something. The picture that is included in our photo album is one of me half ways through the dressing routine. I hadn’t put on the highly embarrassing white pants with the fluffy white tail yet. Rebecca thought that all of you would like to see a picture that proved that I was in the costume. There is not one around that shows the whole outfit with the bunny head off. I suppose some comment right now about the purple/pink dress that I wore would be appropriate, but I’m at a loss for words. I guess I’ll let the photo speak for itself. It’s damaging enough without me adding fuel to the fire.
The kids seemed to really enjoy the day. There was an ice/snow-making machine that made a huge pile of snow for the kids to play with. At one point, Teri had me walk up on top of the snow. Sadly, some of the kids chose that moment to start throwing snow/ice balls at the poor bunny rabbit. One large one hit me in the neck and proceeded to slide down my back. I’m sure Peter Cottontail never wiggled his butt as much as me trying to get the ice down out of harms way. The temperature outside today was around 185 degrees. I figure that the costume added about 392 degrees to that number, so I was cooking nicely while entertaining the kids. After taking photos and visiting with the children at Quantum House, I went up to the oncology floor and visited with the children that couldn’t leave the floor. I can remember being with Zachary up on the floor when special visitors would come around. It was very nice being able to bring a few smiles to the children that were stuck up there.
All in all, I would say that the day went well. The kids had fun, and I lost some weight while sweating it out in the costume.
Scott
Wednesday, April 16, 2003 6:17 PM CDT
Medical News:
Zachary remains in good spirits and good health. He has lots of energy and no complaints. Today he bowled four games with his friend Kade.
I’ve been scolded for not reporting Zachary’s bowling scores from the Cancer Bowling event on Saturday. He bowled three games: 1). 84 2). 110 3). 102.
Now onto bunny news. It seems that I have been deceived. I just found out today that the outfit that I will be wearing tomorrow is a female bunny outfit! Yes, I did say FEMALE. Now, I am VERY comfortable with my masculinity, but a FEMALE bunny outfit!!! Isn’t it emasculating enough that I’m wearing the outfit in the first place? I cannot imagine how dainty I will look. (Oh great, now I’m using words like “dainty.” This is not good.)
I don’t see anything good coming out of Thursday’s events. They also want me to make the rounds on the hospital pediatric oncology floor for the children that won’t be able to attend the Easter egg hunt. So on top of all of the families seeing me dressed as a girly bunny, the nurses will see me as well! (I’m starting to think that the “moving to Alaska” idea needs to be revisited.)
I just want to go on record now as saying that if my cell phone rings tomorrow 5 minutes before I am scheduled to dress in the girly bunny outfit, and the person calling informs me that I am desperately needed in Wichita, Kansas for an emergency meeting of fishing supply company distributors that just turned 40 years of age, have very short hair, are good at pool, and grew up in Pittsburgh, Pennsylvania but moved down here from Harrisburg, Pennsylvania………it wasn’t planned ahead of time or made up. (There may not be many of us in that category, but when we need to meet, I drop everything.)
Scott
Monday, April 14, 2003 8:13 PM CDT
Medical News:
Nothing new to report here today. Zachary is still feeling great. He remains active and full of energy, showing no signs of pain. This is where we are deriving our strength from right now.
For those of you that missed my entry from yesterday, I have been chosen to be the Easter Bunny on Thursday at the Quantum House Easter egg hunt. I am sure the selection process was long and arduous. It probably involved an intense background check, aptitude evaluation, and months of research into my capabilities. I imagine there were thousands of other prospective bunnies that are wallowing in their failure to procure this prestigious position. I take great pride in the knowledge that I will be bringing joy and happiness to many children this Thursday. (In other words, I drew the short straw!)
Anyone taking unauthorized photos of me in this outfit and posting them on ANY web page will be subjected to the full wrath and fury of my attention in my journal entries. That may not seem like much of a threat, but just ask Michelle how mean I can be.
I had promised to do strip searches before donning the outfit, but Rebecca won’t give me permission to search any of the moms, and the dads just don’t do it for me….so THAT idea got scratched. (The best laid plans of mice and men…..)
I noticed that the Easter Bunny signed Zman’s guest book. (Or was it just some imposter pretending to be the Easter Bunny?) Either way, I won’t be bullied. I WILL be there Thursday to shake my bushy tail.
Scott
P.S. I had posted a riddle about things we consume that were never alive or derived from something living. The two that I had in mind were salt and water. I don’t believe I ever received any others. If you’ve got some, lets hear them!
Sunday, April 13, 2003 6:48 PM CDT
Once again I got lazy and didn’t post a new entry for a couple of days….sue me.
Medical News:
It’s a saying that I’ve used many times, but it’s apropos. “No news is good news!”
Zachary remains to feel great. He had a wonderful weekend. Yesterday he played at the park in the morning, and then in the afternoon he had the bowling event that benefited cancer research and families. Today we went to church and then relaxed at home, doing some cleaning and just taking it easy. We’re home all of next week and then on Sunday its back to WPB for another round of chemotherapy. Thursday is the Easter egg hunt at Quantum House that is sponsored by Connor Moran Children’s Cancer Foundation. Somehow I got roped into being the Easter Bunny this year. So, I’ll be the one wearing the goofy costume on Thursday. If you hadn’t planned on attending, I would imagine the chance to see me in that outfit would be worth the trip. Unfortunately, no cameras will be permitted on the property. I WILL be doing strip searches!
Yesterday was also the golf tournament that benefited the Quantum House. It was a huge success. They had a great turnout and raised lots of money during their auction after the golfing. I’m proud to say that our team finished dead last out of 26 teams. Now, you’re probably wondering why that of all things would make me proud. Well, I am confident that our team was fair and accurate in the submission of our handicaps. I’m not accusing any of the other teams of padding THEIR handicaps, but the winning team finished 20 strokes under par. 20! We had 15 pars and 3 bogies. With the 9-point handicap, we finished with a 66. The important thing is that we had a blast. Even if we had lied and taken the maximum handicap for all four of us, we would have finished with a 61, still 9 strokes off of the lead. The bad news is that I am now on the injured reserve list with tendonitis in my right elbow. That is what I get for whacking the ground with a club while trying to hit a ball that was sitting on a downhill lie. If it wasn’t for that injury, we might have finished second to last instead of last!
Scott
Friday, April 11, 2003 8:41 AM CDT
Yes, we are still here! I was out of town on business Wednesday night and all day Thursday so I didn’t get a chance to update the page.
My partner and I traveled up to Jacksonville to set up some tackle shops with the fishing rod line that we carry. We left Wednesday night so we could start early Thursday and see all of them in one day. When we arrived in Jacksonville Wednesday night, it was very, very cold. We learned quickly that it was going to be cold Thursday as well. Since both of us are South Florida boys, we of course had nothing but short sleeve shirts and shorts. Evidently I missed the key press release that discussed Jacksonville being traded to Vermont for future syrup rights. I guess it has been in the works for quite some time. The weather in Northern Florida is more like Vermont than down here, so I guess it makes sense. Waking up to 39-degree temperatures after having only driven 3.5 hours is a little disconcerting. I hope the state of Vermont enjoys their newfound province. They can have it! We froze our butts off for the first hour, then we found a Wal-Mart and purchased the last remnants of sweat pants and shirts they had.
Medical News:
Zachary remains to feel great. He bowled five games yesterday with his new bowling ball. This is rapidly developing into his favorite pastime. We speak with many friends and family members about the adventure that we are living, and many people have encouraging words and advice that DOES help. I would like to single out one comment in particular that has stayed with me all week. It has really helped! Our good friend Bo and I were talking about the new elevated urine numbers and he said, “I look at Zachary and see how great he looks and feels, and it makes me feel ok about things right now.”
I have always been easily caught up in the technical side of Zachary’s illness. Absorbing my thoughts in numbers, odds and possibilities. It is easy to get lost in the unknown. And to quote a famous talk radio host, “You start to confuse activity with accomplishment.” Bo is right. Regardless of what is going to happen days, weeks or months from now, Zachary FEELS GREAT right now. That may change at any moment. But after all we’ve been through, all we have endured over the past three years; the biggest injustice that we could commit right now would be letting the unknown diminish the splendor of what we have today! Thank you Bo!
Tooth Fairy News:
Last night we attended a meeting that was held by the doctors and scientists that run the tooth fairy project. (Investigating the high levels of radiation in the baby teeth from children that live near and around nuclear power plants.) They had press conferences this week where they released some of the data supporting their statements about the dangers of nuclear power plants. With the war coverage, the news from these folks got “lost” in the mix, but I have been told that some national reporters are working on stories that will get wider coverage. When I get something, I’ll pass it along to all of you.
Scott
Tuesday, April 8, 2003 5:33 PM CDT
How many times have I written about urine numbers?
How many times have I lamented about tough decisions?
How many times have I explained the nuances of reading into test results?
How many times have I allowed all of you to crawl inside our heads to see what we live with every day?
(Those were all rhetorical questions for those of you that have been keeping score. Do NOT feel obligated to research and answer them.)
In case you haven’t guessed yet, the urine numbers are in from last week. I’ve been thinking about this all day, trying to come up with a good journal entry that would explain it all again so no one would have to go back and relearn the basics. I guess there is no way around it. So here we go.
Cancer Sucks 101.
Welcome to class everyone. I hope your three-week break was nice. For those of you that were sleeping last time, here is a quick review;
1). The marker (or test) that we use for gauging the level of activity in Zachary’s cancer is found in his urine. It is broken down in two levels that are called the HVA and VMA. (These both have very long medical names that would mean nothing to anyone except the guys that named them.)
2). Normally, when the cancer is more active, these levels will elevate. When the cancer is more stable, the levels will come down. (This is NOT an exact science. These levels can fluctuate from diet changes and medicine changes as well.)
3). The chemotherapy that Zachary has been using since August of last year has been used to “stabilize” the disease. It has kept the cancer at a fairly constant level, not allowing it to increase, yet not knocking it down any more either. Since approx. October, Zachary’s urine levels have stayed fairly consistent, fluctuating only by a small percentage every three weeks.
4). The same chemotherapy mentioned in #3 has a history of being effective for 9 – 12 months on average. There are some children that get a benefit from it for much longer periods of time, (18 months or so,) and some children that only get a few months of benefit from it. All children on this chemotherapy will eventually find themselves battling a cancer that has worked it’s way around the medicine and has rebounded with a vengeance.
5). Zachary has been taking the Protocel for about 44 days now. One of the known effects of Protocel is an increase in the marker levels being used. This has been explained to us as a result of the cancer breaking apart and appearing to spread, when in actuality it is leaving the body. This is why it is recommended that you do not do scans or biopsies for at least three months after starting the Protocel. It needs time to do its thing.
6). The only other way to determine if the cancer is “taking over,” is by observing Zachary’s clinical condition. In other words, how does he look and feel? Well, right now he looks and feels great! You have all seen my updates as to how active he has been lately. So this is a good thing. The only caveat to that would be the fact that urine markers can increase to very high levels BEFORE clinical signs of disease start to rear their ugly heads again. (Pain, fevers from tumors, etc.) (All the good stuff.)
7). So, in summary, when looking at urine numbers you have to been conscience of the clinical condition as well as the possibility that the Protocel is delivering the goods as desired! At the same time, you get to be tortured along with us in NOT knowing whether we have bet everything on a “new” medicine that might not be working while allowing an aggressive, obnoxious, ugly, horrific, mean old nasty cancer a chance to take over our child.
Here is the breakdown of urine marker numbers over the past three samples.
TYPE-----DATE-----LEVEL-----+/- %
HVA.........2/17.........23.2
HVA.........3/10.........27.6.......+ 19
HVA.........3/31.........39.3.......+ 43
VMA.........2/17.........9.8
VMA.........3/10.........12.4.......+ 27
VMA.........3/31.........16.1.......+ 30
Ok, I’ll admit that these numbers scare the $hit out of me. But having said that, I feel that I have reached somewhat of a turning point in my religious view of all of this. I think there is somewhat of a “leap of faith” that needs to take place here. It cannot be a coincidence that there is currently no medical way to definitively determine what the cancer is doing. Maybe this is somehow part of God’s plan. Not in a cruel or malicious way, but simple a test of faith in the course of action that we chose. I don’t know. I certainly have never been an overtly religious individual. I didn’t become one when Zachary got diagnosed. I could never envision a God that would appreciate a person that only has a use for him in times of trouble or extreme need. I have come to rely more on the comfort and solace that religion and church can provide in one’s life. Until very recently I held a view that religion was useful only in laying the groundwork for ethical and moral values that might not otherwise be delivered to our youth. Now, I’m not so sure.
Scott
Monday, April 7, 2003 6:38 PM CDT
For those of you that didn’t make it to the benefit yesterday or if you left early and missed the “Great Rock Wall Challenge,” there are now photos on Genna’s page. Go to: www.caringbridge.org/fl/gennaspage.
I just viewed the photos, and I have to say, if I didn’t think I could feel worse about life prior to viewing the photos, seeing my large butt on the computer screen sure put me over the top! Do computer monitors add 50lbs. or something? Well, I guess I shouldn’t feel too bad, I did lug that weight up the wall.
It looks like Zman has a team for the bowling event on Saturday. Mitchell and Kaleigh are coming, and we’re still hoping Matthew, Christina, Ty-Michael and Alex will be there too. Anyone that is sponsoring one of the kids can commit to a set amount or pledge an amount per pin knocked down. Checks will need to be made out to the sorority that is sponsoring the event. They are a national organization that contributes to research and local families fighting cancer. The name is: Phi Beta Psi – Beta Zeta Chapter.
The bowlers will have one week after they bowl to deliver their donations. So you can wait and see how many pins they knocked down during the three games, or you can send along a set amount. Thank you to everyone that has already committed to sponsoring Zachary. It sounds like it will be another great day for the kids to have fun while raising money for a good cause.
Saturday morning I am participating in a best-ball golf tournament that benefits Quantum House. I am playing with Eric (my business partner,) Erik (Cam’s dad,) and Jeff (Jessica, Christina and Matthew’s dad.) It should be a blast. I’m sure that my superior skills will be carrying the team the whole day, but someone has to step up to the plate and deliver the key shots for the team. It can get a little old having to be the one that remains consistent for the team, but if I had to depend on the other three players, we’d be in big trouble. My secret weapon will be my wicked slice. Sure, most players try to avoid the slice. I’ve learned that even though I add about 150 yards to every hole, it’s the only way to go. When it comes to chipping and putting, I rule! I will be updating on this event as the week goes on.
Scott
P.S. Where are all of the guesses to yesterdays riddle? I’m waiting!
Sunday, April 6, 2003 8:48 PM CDT
What a long day today was! We spent most of it at the benefit for the Mathis family. The weather cooperated and they had a really good turnout. Thank you to everyone that showed up to support these wonderful people. There were many familiar faces there; in fact, at one point I noticed that virtually all of the voting members of the Cancer Sucks Club were present. It’s really nice to see every one getting together for a good cause.
The much-anticipated rematch between Genna and me on the rock-climbing wall took place today. I would love nothing more than to brag about how easily I defeated her today. However, my victory is tainted by accusations of unsportsmanlike actions on my part. First I would like to categorically deny any wrongdoing. Sure, I tried to bribe Zachary into grabbing Genna around the ankles as she started to climb to give me a head start, but he chickened out. Since it really never took place, how can I be guilty of anything there? Secondly, I was accused of being soooooo nervous before the competition that I used my sweat to make her first few ledges slippery. (She did slip right after we started. That misstep DID give me enough of a head start to keep her from beating me.) While I’ll hesitantly admit that I MAY have been perspiring a little teeny bit. (It was like 150 degrees out today.) I absolutely deny any intentional placement of my sweat on her side of the rock. Maybe the wind kicked up and blew some from my brow onto her side. Am I to be held accountable for every odd act of God that takes place? I should think not! Lastly, I was falsely accused of purposely choosing the “easy” path up the rock. Ok, maybe my path was somewhat less challenging than Genna’s. But keep in mind that she thoroughly kicked my a$$ the last time we had this little competition. You can’t blame me for trying to save a little bit of face…..can you?
The bottom line here is……………I won! It may not have been the prettiest victory, but it was a victory non-the-less. I can see that no matter what I say, I will need another chance to prove that I can beat her. I don’t know when this will happen, but I’m sure the many CSC members that were present today will make sure another rematch takes place. If for no other reason than to humiliate me!
It looks like Zachary may get some teammates for Saturday’s cancer bowling event. We spoke with a few of his friends today, and they are trying to clear their schedules so that we can have a team of kids affected by this disease. I’ll update on that more as the story develops.
Scott
P.S. New riddle: I’m compiling a list of things that we consume (eat or drink) that was never alive or ever came from a living source. I’ve got two so far. How many you can think of? Email me your guesses. Are there more than two?
Saturday, April 5, 2003 9:13 PM CST
Think of a number.
Double it.
Add 2 to your total.
Now divide by 2.
Now subtract out the first number you thought of.
Your answer is the number of hours you need to set your clocks ahead tonight.
(Unless of course you can’t add or follow simple instructions.)
We just got back from laser bowling. Zachary loves this. It’s basically bowling in the dark with black lights, fog and music. They mix in multi-colored pins and give prizes if you get a strike when one shows up as the head pin. They also play goofy games for money. The one tonight allowed one person from each lane to walk up to the foul line with their ball, turn around and face the crowd, spread their legs, and then bowl backwards between their legs. They take down the bumpers so gutter balls will eliminate you. Zachary made the first cut then got a gutter ball on the second. Only 4 bowlers made it to the third round, so he did pretty well. Today, we actually ordered a ball for him. He loves to bowl so much and has wanted one for a while.
While we were at the lanes tonight, we noticed a sign mentioning a “Bowl Down Cancer” event that is taking place next Saturday. Basically you get sponsors to commit to either a fixed dollar amount, or to at least $.02 per pin. The bowlers will each bowl three games. For the purposes of raising money for the charity, they will credit each bowler with at least a score of 100 on each game. So, if you were to sponsor Zman for $.02, you would be committing to a donation of $6.00. (Unless he did better than that.) The organization that is putting this on uses the money to; “Assist cancer patients and their families in our local area. It will also assist cancer research centers.” If you are interested in sponsoring Zachary for this, let us know. None of these funds are for us directly. We are doing this because, A). We like to give back to the people that have worked to make this nightmare survivable, and B). Zachary loves to bowl.
If anyone out there is close enough (geographically) to join Zachary in this event, let us know as soon as possible. I spoke with one of the coordinators and she said we could put together a team of three or four bowlers. But, each bowler needs to have a commitment of at least $20.00 in donations. (The bowling shoes will be provided by the bowling alley.) Registration is at 3:30pm on Saturday 4/12/03. Bowling starts at 4:00pm. Email us with any questions.
Tomorrow is Mitchell Mania!!!!!!!!!!!!!!!!!!!!!!!!!
This is the benefit that I spoke about in my last few journal entries. It will start at 10:00am in Green Acres. Take I-95 to 10th Ave. Go west to Jog road. Turn right, (North) and the park is immediately on the left. It should be a blast! Lots of games and food.
Scott
Friday, April 4, 2003 9:38 PM CST
WE ARE HOME!!!!!
Sure, this may seem trivial to some, but to me it means I’ll sleep through the night tonight. Don’t get me wrong; the Quantum House has wonderful rooms, massive comfortable beds, and an atmosphere that could rival any hotel. But, it is not home! I don’t know why I wake up 5 or 6 times each night while sleeping there. There are no noises or disturbances. It may have something to do with Zachary sleeping 9 feet away and wondering if he is ok. At home, he sleeps 30 feet away in his own room, and I sleep just fine. Maybe it has something to do with the needle and line hanging out of his chest. I always worry that something awful will happen during the night. I will sleep tonight.
We are now 40 days into the Protocel treatments. Is it working? We want to believe it is. We have staked a lot of prayers in this treatment. Zachary no longer has the runny nose that stayed with him for 15 days. We are still planning to redo some of his tests in about 1-½ months to see if we’ve made any progress. The urine results from this week will probably be back early next week. Once again I will not be surprised if the numbers are elevated. Without obvious signs of continued pain in his bones, there is no way right now to determine the status of his cancer. One day at a time…….we take it one day at a time. (Sometimes that is easier said than done.) Outsiders say it to us all of the time, then they go back to their lives and don’t have to obsess over the insanity that is our lives.
We do appreciate the sentiment, but forgive us if we sometimes appear to have a glazed look about us…….we’ll get over it.
This Sunday is the benefit for our friends the Mathis’s. It will begin at 10:00am in Green Acres. If you take I-95, exit at 10th Ave. and go west until you get to Jog Road. The park is supposed to be on the N.W. side of that area. I believe it is a city park.
Scott
P.S. As always, our thoughts and prayers are with the many families that are fighting this horrible disease. I would also like to ask that everyone keep our brave men and women in the armed forces in their prayers. They are fighting to keep us out of harms way. I feel they deserve the respect and support of our entire nation!
Thursday, April 3, 2003 7:56 AM CST
I for one am very disappointed! Here I am, spending my valuable resources to purchase quality ocean acreage for all of you to take advantage of, and not one person has jumped at this once-in-a-lifetime opportunity. Did I mention that many of the plots have landfront views? Well, they do! Not only that, but it is entirely possible that future oil rights from underneath your plot could yield millions of dollars years from now. Maybe I need to take some photos of the areas that are available....pictures always sell.
Medical News:
Zachary is still doing pretty well. His only major complaint came last night around dinner time. His ankles started to hurt. This is always unnerving because we know that both ankles have bone lesions of cancerous cells. He was walking around the Gardens Mall earlier in the day with Grandma and Grandpa, so that is probably what caused the pain. By the time we got back to the Quantum House, he had stopped complaining, so that was a good sign. Tomorrow after chemo we will be heading home, so I will probably update again tomorrow night, once we are home.
Zachary's good friend Mitchell got a fever on Monday. He has a bad cough and had to be admitted to the hospital. It is probably something that is going around, because there have been several other oncology kids that have had similar symptoms in the past two weeks, but it is always scary when one of the children gets a fever. It requires more CAT scans, xrays, blood testing and sleepless nights. Please keep Mitchell in your thoughts and prayers. We are hoping he is able to recover quickly and get home. Remember, the benefit for his family is this Sunday. It is in Green Acres, at the park that is on Jog road & 10th Ave.
Scott
Tuesday, April 1, 2003 6:41 PM CST
At the beginning of last night’s journal entry I included a “famous” quote. This quote was actually made up by me yesterday as I was writing the journal entry. Why would I go to the trouble of coming up with some bizarre quote you ask? Well, if you read my postscript, you would have noticed that I mention the fact that every word in the quote began with a capital letter, and furthermore, those letters could be put together to make some words. By reading the guest book entries and by evaluating the phone calls that I received, obviously many of you failed miserably to complete that seemingly easy task. If you HAD looked at those capitol letters and put them together, you would have been rewarded with the following three words:
APRIL FOOLS DAY
What does all of this mean?
Well let’s see……..where do I begin?
1). I do not now, nor have I ever had a sister.
2). This make believe sister did NOT email me.
3). This make believe sister does not live in Alaska.
4). I was not offered a job in Alaska.
5). We NEVER considered moving to Alaska. (Or anywhere North of Jensen Beach.)
6). Many of you are very gullible.
7). Have I left anything out?
Ok, ok….so it was a cruel joke. But I have to tell you that I can’t remember the last time that Rebecca and I laughed that hard. Today, reading some of the guest book entries and getting some of the phone calls was a riot. It is reeeeeeeeeealy tempting to single out a few folks for their phone calls, but I promised Michelle and Audra that I wouldn’t stoop to such low levels as picking on them, so I won’t.
I must say that after realizing how easy it was to fool so many people, I'm thinking about getting into the real estate game. I've purchased the rights to 500 square miles of the Atlantic Ocean. I am selling them in 1 acre increments for a mere $5,000.00 per acre. Be the first on your block to own your own portion of one of this planets great oceans! Email me for more details if you are interested. Perks include:
1). Bragging rights to your friends.
2). Charge fees for usage of your water area.
3). Collect taxes on any fish caught from your property.
4). Make deals with large shipping companies for travel rights.
5). Anchor your boat and avoid paying land taxes.
(1 acre per person, tags not included, batteries not included, no substitues, no refunds, cash only, allow 6 - 8 weeks for title to arrive.)
If you have known me for any length of time or if you have read enough of my journal entries then you know how deranged I can be. I apologize for any anxiety that I may have caused anyone that was worried about us moving so far away.
I’m sure there are many folks out there planning and plotting revenge. I can live with that. Just remember, I am cursed with a brain that has me thinking out scenarios days and weeks in advance. I go through conversations in my head for both sides of an issue so when the conversation actually takes place, I’m prepared…..it sucks to be me, but I am rarely surprised. (The last surprise I had was the birthday party that our friends down here had for me.)
Scott
P.S. The answer to the other riddle is below…if you want to keep working on it, don’t scroll down.
Fill the 5-gallon bucket with water. Pour water from that bucket into the 3-gallon bucket until it is full. Empty the 3-gallon bucket. Now, pour the remaining 2 gallons from the 5-gallon bucket into the 3-gallon bucket. Refill the 5-gallon bucket. Now pour off enough water to fill the 3-gallon bucket the rest of the way, (1 more gallon.) That leaves you with exactly 4 gallons in the 5-gallon bucket. There is another way to do this, but you get the idea.
Monday, March 31, 2003 7:39 PM CST
Medical News:
Chemotherapy started today without any problems. Zachary was a little bit resistant to the idea of having another week of chemo, but after threatening to throw away all of his Yu Gi Oh cards, he came around! Other than that, it was a pretty uneventful day. Now onto the big news from the weekend.
(First I wanted to include this quote that I found.)
Always Promote Realistic Ideals, Lambasting Foolish Or Otherwise Loony Sentiments Daily And Yearly.
This is going to come as a complete surprise to many of you, but I got an email yesterday from the last person on the planet that I would have ever expected to get one from. My sister. Now, don’t go pulling up your old journal entries looking for all of the stories and nice comments about her, you won’t find them. She has been estranged from our family for over ten years! I won’t go into the details; it would take way too long. Suffice it to say I never in a million years expected to hear from her. Evidently she was doing some research on a legal matter, (she is an attorney,) and she stumbled across our lawsuit on the Internet by accident. After reading about Zachary and all that has been happening, she dug further and found his web page. She learned all about his illness and what we have endured over the past three years and decided that it was time to try and repair the damaged relationship that we’ve had. She emailed me from the web page and wrote a very long letter asking for forgiveness and another chance at a relationship. Included in that email was her phone number. I didn’t even know where she was living until we talked. Apparently, she moved to Juneau Alaska four years ago to practice law with her husband. We talked for several hours, and then she dropped the bomb on me. They were doing some research work for a company that was hiring several people and she could get me a job up there that pays more than double what I am earning down here in Florida. There is a wonderful hospital that has an oncology unit that was just built two years ago, and the company is paying moving expenses and helping with housing to entice families to come to Alaska! I was shocked. Why would we want to move to the cold from the sunny South? After talking with her for a few hours, I started to think about how great it would be to have the money to pay bills and maybe even start putting some away for our future. I’m supposed to call and set up an interview after we get back from the hospital, but today I received a call from one of the executives there and she assured me that with my background, an interview was just a formality.
Rebecca and I stayed up late last night talking about this and we feel there is a strong chance that we will be making the move within the next few months! I will keep everyone updated as this new adventure in our lives develops.
Scott
P.S. That quote I used in the beginning of this entry sure has a lot of capital letters in it….I wonder why that is? Maybe they can be used together to form words somehow. Another riddle for the masses.
Saturday, March 29, 2003 10:08 PM CST
As distractions go, the Tampa trip was really great! The hockey game was exciting. The Lightning tied the game late in the third period and they held off a furious attack during overtime. After the game, we got to go down near the locker room and hang out with Brad Richards and Martin St.Louis. These guys were great. They came out and took pictures with the kids, signed some more autographs and chatted with us for quite some time. After that, we were escorted to the area where the players come out after changing, and the kids got some more autographs and pictures. The Tampa Bay organization and the staff of the forum were wonderful. They treated the kids like celebrities, making them feel very special.
Once again we were lucky to have traveled with the Mathis family. The kids get along like champs, and they are fun to be with. On the way home we stopped and got some fresh strawberries in Plant City….the car smelled great the whole way home!
Today we took it easy, did some yard work, and then Zachary and I saw the new movie The Core. It was pretty good. Tonight we went laser bowling with Lars and Sarah. Tomorrow, church in the morning, then off to West Palm Beach to get ready for another fun filled week of chemotherapy. (No sarcasm hidden in there anywhere I assure you.)
One week from tomorrow is Mitchell mania. This will be an exciting benefit for the Mathis family. Anyone that lives within driving distance should make a point of dropping in. There will be lots of games for the kids, food, prizes, and some great activities, including a rock wall, bungee run, etc. To get more information, check out Mitchell’s web page. The link is shown below.
I will be updating from the Quantum House next week, so don’t panic if there isn’t an update every day.
Scott
New Riddle:
If you have a 3-gallon bucket and a 5-gallon bucket, and you need to get exactly 4 gallons of water, how would you do it? You can fill or empty either of the buckets as often as you like, but you must get exactly 4 gallons….no guessing or estimating! Email me your guesses.
Wednesday, March 26, 2003 9:52 PM CST
Sitting here on a Wednesday night preparing for bed, I have been collecting my thoughts for another journal entry. There have been no great breakthroughs, no insightful revelations, and no new discoveries in our battle with the MOASD. (Mother of all Sucky Diseases.)
Zachary still has his runny nose. This appears to be a symptom of nothing in particular. He has had no fevers, the discharge is white or clear, and he feels fine. Dare I say, “It is exactly what the families using Protocel said to expect?” Well, I’ll hang my hat on that for now.
We have two months left before we will dare to do new scans or bone marrow testing. That is 60 days, or 1440 hours, or 86,400 minutes, or 5,184,000 seconds. Not that I’m keeping track or anything. By the time I’ve finished this entry and gotten it posted on the web, I’m sure that number will have been reduced to a mere 5,183,700 seconds. Wow, what a difference!
Tomorrow morning we are heading over to Tampa with the Mathis family for another hockey game. The kids are really looking forward to this. (The adults are too.) I welcome the distraction from reality. I have written about the Mathis family before, but I cannot overemphasize how great they have been for us. Zachary has true lifelong friends in Mitchell and Kaleigh, and Rebecca and I are very lucky to have friends like Bo and Diane to share our ups and downs with.
Last night I was working on a project for a friend that required me to think back over many of the experiences of the past three years. As hard as it is to recall some of the more dramatic and distressing events, it was uplifting to think back to meeting some of the families that have become our lifelines. We were blessed before 3/16/00 with supportive family and caring friends. Now, we are further blessed with new friends that have included us in adventures and helped to keep us grounded during a nightmare of uncertainty.
Earlier this week I was out selling tackle in our work truck for our driver that had a family emergency. Some of the customers that I saw hadn’t seen me in quiet some time. I know that many of them get updates from our driver or my partner, but seeing me always prompts an inquiry as to how Zachary is doing. I always oblige by giving an update. If pressed for details, I will share a little bit of information about how we are now treating him. When this happens, I sometimes find myself doubting the very words that are escaping my lips. Are we a desperate family grasping for straws in a field of sand? Is it responsible to give hope to a child when you have doubts yourself as to what is being accomplished? Are we making the right decisions?
I’ve learned not to allow the judgments of others to influence the care that we provide for our son. You can become mired in a sea of conflicting opinions if you dive too deeply into those waters. It is however somewhat unnerving to go through each day having to argue in your head about all that is transpiring around you. I believe that I have been committing one of the mental sins that I have preached against time and time again;
Confusing activity with accomplishment.
I stay quite active with the thoughts that haunt me, but what am I accomplishing? Nothing except self-torture.
We are 12 hours away from the beginning of another distraction/adventure. It couldn’t have come at a better time.
They say that drug addicts require more and more of the drug to get the same effect that first drew them into the drug. The escape gets more and more difficult to achieve because of the way that endorphins are released from the brain. Are we falling into that same trap? Requiring more and more distractions to achieve a sense of normalcy in our lives? It certainly isn’t any sort of euphoric sense. I’ve touched on this before, many months ago. These special trips and outings can sometimes bring us up from the depths of despair and stress.
We WILL enjoy our time over in Tampa. We always have a great time with the Mathis family. If you take nothing else away with you from this journal entry, take away the knowledge that we are coping as best we can under extreme circumstances that could end soon, go on for months or years, or maybe even disappear and leave us.
Scott
P.S. Cancer will suck until it is 100% curable. (And after that it will probably still suck.)
Sunday, March 23, 2003 8:22 PM CST
As if there were ever any doubt, Zachary won the hoola hoop contest with a runaway performance. For those of you that have never seen him do the hoola hoop, I can only say that clearly, he is a freak of nature. There is no logical explanation why any human being should be able to do the hoola hoop with such ease. I consider myself a fairly athletic individual that possess better than average coordination, but somehow, I cannot get a stupid plastic ring with a 3’ diameter to go around my hips any more than 3 or 4 times. And, to add insult to injury, the ONLY reason that I successfully get the 3 or 4 rotations, is because of the force I use to start the ring moving! Zachary can make that hoop go around his waste for an eternity without expelling any more energy than I use to blink, yet when I try to hoola hoop, I come dangerously close to dislocating my back. Not to mention the sweat and the abnormally high heart rate that I immediately incur.
The ONLY explanation for all of this that makes any sense is, Zachary was placed here on this planet by aliens to torment us with his freakish skills. I can live with this assessment, mainly because the alternative is accepting that a 9 year old somehow possesses a skill that has eluded me for 40 years.
The dance-a-thon at FAU was a blast. We met some new families, some new dancers, and had a great time. There was line dancing, games, food, and a great group of people that came together to raise money for the Children’s Miracle Network. They raised over $8,000.00 this year! Five families showed up this year, a record! All of us shared our stories with the dancers so they could better appreciate how their efforts affect the lives of children and families in need. I actually made it through our story without coming close to tears. I may have found a new tactic for my speeches. I focus in my mind on how much we have to be thankful for, instead of focusing on the horrible details of what Zachary has been through. I even worked it into my speech. I told the dancers that it may sound odd for a parent of child with a non-curable cancer to say they are “thankful.” But, I explained that we have been blessed with an entire extra year that many doctors had told us we would never get. We are also blessed to be able to do this current chemotherapy on an outpatient basis. Zachary gets to sleep at the Quantum House with us, and we get to visit friends, see movies, and have lots of quality time away from the doctors and hospital while we are down in WPB. All in all, I believe that it went well. I don’t know if it is a good thing, or a sad thing, that I can now tell this story without breaking down into a blubbering mess.
We are home until Thursday when we head off to Tampa with the Mathis family to another hockey game. The players that Zachary got to have dinner with in December were kind enough to arrange for tickets for Thursday night’s game. We will get to see the players after the game, and we’ll return home on Friday.
Scott
Saturday, March 22, 2003 9:22 AM CST
Welcome to the weekend!
Medical News:
There have been a few inquires in the guest book about the Protocel and how we will be gauging it’s effectiveness. I am very new to all of this, but I will do my best to give you the answers that you seek. There is a support group online for Protocel that is made up of many people that have personally benefited from its use. Through this group, and through the continued help of Susan Griffin, I have learned that many of the symptoms that Zachary is experiencing are to be expected. Even the timing for these symptoms falls into place with what we were told ahead of time. Many people have told us that we should not do any scans or bone marrow testing until Zachary has been on the Protocel for at least 3 months. This should give his body adequate time to respond and rebound from the initial effects of this medicine. We have been using this for 27 days now, so in two months, I will schedule a bone marrow aspiration and biopsy, and possibly an MIBG scan. (The MIBG scan is specifically used for detection of neuroblastoma cell activity in the bones.)
That pretty much sums it up for where we are with all of this. We’ve got at least another 2 months of this “dark territory” to deal with. Unless Zachary starts getting very sick and is experiencing pain in his bones and joints, we will have no way of knowing what the disease is doing. Any scan we do now, will almost assuredly show increased activity. This is a very common theme that is seen in a variety of patients with many different cancers. Supposedly, once the cancer cells start to break up, they will give the appearance on scans to be spreading. This is why they say to wait for the 3 months before doing testing. So, we wait.
We are preparing to leave for Boca Raton, Florida. It is about an hour away from here. This will be the third year in a row that we have attended the FAU dance-a-thon. The students stay up all night to raise money for the Children’s Miracle Network. Zachary looks forward to this all year. He is the reigning hoola hoop champion. He even went out yesterday and bought a new hoola hoop just for this night. We attend this event with our good friends, Tim, Audra, Ty-Michael, Alex & Sierra. Ty-Michael was one of the first children that Zachary met when he was diagnosed three years ago.
CSC News:
Nothing new to report here. Unfortunately, the club still exists. It doesn’t look like cancer will stop sucking any time soon.
Scott
Joke of the day:
A man is driving down a dusty country road going about 30mph when a chicken goes racing past him. He follows the chicken up a driveway to a small farm. When he gets out of his car, he sees many chickens racing around the farm at great speeds. He approaches the farmer and asks about the fast chickens. The farmer says, “I’ve bred three legged chickens because of how many folks like to eat the drumstick.” The curious man replies, “Wow, that’s amazing! How do they taste?” The farmer scratches his head and says, “I don’t know, I can’t catch them.”
Wednesday, March 19, 2003 6:26 PM CST
Medical News:
Well, the diarrhea finally stopped! The runny nose has persisted, but I think he can deal with that. He slept today for about 2 hours. Fatigue is another sign of Protocel working. (Crossing fingers.) He is still fighting us on the water issue. He had a pretty rough day yesterday. Rebecca beeped my on the Nextel to tell me that Zachary had just informed her he was quitting the Protocel. He was tired of the diarrhea. I came home from work and sat him down for a chat.
Talking to Zachary about serious subjects is like swimming in mud with no arms or legs. You can suck the mud in through your mouth, and then pass it out through your backside for propulsion, but who would want to?
I broke it down for him as simply as I could. I said, “One of two things is happening right now. Either the cancer is get worse, or the Protocel is working.” “If the cancer is getting worse, the only treatment we have available is the harsh chemo from a year ago that would require inpatient visits.” Then, I gave him a choice. “Would you rather go back to staying in the hospital for a week, getting blood and platelet transfusions, and then returning for fevers a week after getting home? Or, would you like to work through the runny nose and diarrhea and find a way to continue the Protocel for at least 3 months so we can see if it is helping?” He chose the second! (Boy do I enjoy having these conversations. What fun it is to talk about life and death issues with your nine-year old instead of sports, games and girls! I’ve lost track of how many times in this past year I’ve had to confront him with these wonderful issues. (I’m thinking that maybe cancer sucks.)
Last night I was down in North Palm Beach for the annual meeting of the Junior League. They are a wonderful organization that provides financial and physical support for the Quantum House where we stay while getting chemotherapy. They are constantly cooking meals, volunteering their time, and donating funds to help the house. The director at Quantum House had asked me to speak at their meeting to tell our story. I’ve done this before for them. Our experience is somewhat unique, because we were getting treatment before the Quantum House existed, and we’ve stayed at two other hospitality houses. I usually do pretty well with these speeches, as long as Rebecca and Zachary are nowhere in sight. This time, I got a little choked up at the end while thanking them for all they have done for us. I didn’t count how many of the women were crying, but there weren’t too many dry eyes. Even Richard, the director from Quantum House was a little choked up, and he’s heard me give that speech about 5 times now. I remember giving one of these speeches for the Children’s Miracle Network at their annual luncheon a year ago. There were executives from all of their major contributing companies, local news personalities, and of course the three of us. I got about 30 seconds into it and started crying in front of 150 or 200 people. I regrouped after about 20 seconds and was able to finish. I had the whole room in tears. I think this may be my calling in life. Getting everyone in a room to cry on command.
This weekend is the annual FAU dance-a-thon. Students at Florida Atlantic University have done this two years now. This will be their third. They get sponsors to donate money if they can stay on their feet from 6pm Saturday until 11am Sunday. There is music, games, food, dancing, contests, etc. We had a blast the last two times, so we’ll definitely be there this year. At the end of the dance, they ask us to tell our story so the college kids can get a better appreciation of how their funds impact families. I was crying so badly last year, Audra had to tell our story. (We had just relapsed and been told that Zachary was not going to live long.) I’ll try to go solo this year, but I’m sure my escapades will end up in my Sunday journal entry.
CSC:
The club has gotten quiet lately. I need to work on the web page and to get some samples of shirts and buttons to organizations that have potential to spread the word. I keep looking at the software that allows you to make fancy web pages. (I need to bite the bullet and read the books, do the homework.)
Scott
P.S. The mathematical exercise from my previous entry is designed to have you end up with the number 4. From there, you get the letter D. That should give you Denmark, unless you are Juliet who HAD to be different and chose Deutschland. From Denmark, you SHOULD get Kangaroo. Of course, someone HAD to go with Koala. From Kangaroo, you get orange.
P.S.S. Instead of another riddle, how about a tasteless joke? Oh boy, I can see the faces cringing. Many people out there are sweating. What will Scott do? How embarrassing is THIS going to be?
There was once a small town that had a park in its center square. In the middle of the park were two statues that were placed facing each other. One of a naked man, the other of a naked woman. God looked down at the statues and brought them to life. He immediately said to them, “You have served this town well for many years, I will give you 30 minutes to enjoy being alive to do as you wish.” The couple ran off behind the bushes and the sounds of giggling and laughing could be heard for 15 minutes. After that, they came out and said to God, “We are now ready to return to being statues.” God replied, “You still have 15 minutes.” The man looked at the woman and said, “Ok, this time you hold the pigeons down and I’ll poop on their heads!”
Monday, March 17, 2003 6:10 PM CST
When we started on the Protocel journey 22 days ago, we were forewarned of the side effects to watch out for. We were even given a likely timetable for those symptoms to show up. We were told that many of the people taking this supplement start seeing symptoms after 3 weeks. Well, we are seeing some interesting symptoms that fall in line with what we were told to expect.
Zachary’s urine report came back today. One of the things we were told to watch for was elevated levels in any cancer marker that we use. (Like the urine VMA and HVA.) Well, Zachary’s VMA was 9.8 three weeks ago. Now it is up to 12.4! His HVA was 23.2 and now it is up to 27.6! That represents a 26% and 18% increase in those two levels. Over the past 2 or 3 days, Zachary has had a runny nose and mild congestion. This is another common sign of “lysing” or the breaking up and discharge of cancer cells. This morning at 3:00am, I heard something that woke me up. I ran into Zachary’s room to find him sitting up vomiting all over his bed. This was strange for three reasons. 1). Zachary almost never has gotten sick during the night. Even when he was on the harder chemotherapies, his sleep was usually his salvation for the day. 2). The vomit was almost entirely liquid. Zachary doesn’t’ drink as much as we would like during the day, so I would not expect to see mostly fluid in his vomit. 3). The color was very odd. We were told that this could happen, but to see it was interesting. I would have posted a photo on the page for you, but somehow I don’t think you are all THAT interested in his vomit. It was an odd shade of brown/gray.
What does all of this mean? Well, it pretty much comes down to one of two things.
1). The Protocel is doing exactly what it is supposed to do. Ridding his body of the cancer that has haunted us for 3 years! If this is the case, he will experience varying levels of these symptoms over the next couple of months, and then he should show great improvement on scans, biopsies and aspirations.
2). Through some cruel coincidence, the cancer has decided to choose NOW as the time for its rebound and acceleration. If this is the case, then he will progressively get worse. There will be bone pain that will progress daily until he will require pain medicines to fight it. I don’t know what sort of timetable this scenario would hold for us. Some children get many months of slow progression. Some are not so lucky.
So, here we are again. Watching, waiting, praying, hoping, living. (Not necessarily in that order.) Thank you again for the multitude of kind thoughts and prayers that many of you have entered in our guest book. We are truly uplifted by the comments we receive.
Scott
P.S. I have a mathematical exercise for you to enjoy. (Don’t worry; it’s not too tough.)
Just remember to scroll down slowly….the answer is way down at the bottom….no cheating.
1). Think of a number.
2). Double it.
3). Add 8 to your total.
4). Divide by two.
5). Subtract out the first number that you thought of.
6). Now, take your remaining number and find the letter that it represents in the alphabet. (Example = if your number is 1, the letter would be A. If it were 2, the letter would be B.)
7). Take that letter and think of a country that begins with it.
8). Take the last letter of the country, and think of an animal that begins with that letter.
9). Take the last letter of the animal, and think of a fruit that begins with that letter.
Scroll down for my guess as to what fruit you’ve got.
An orange!
Sunday, March 16, 2003 11:18 AM CST
Three years ago today Zachary was diagnosed with cancer. I was driving in our work truck in Ft. Lauderdale, and Rebecca got the call from the physician that had ordered the MRI. "Your son has tumors on his spine. Go directly to St. Mary's Hospital in West Palm Beach, they are waiting for you." I got the call from Rebecca, and proceeded to cry all the way to West Palm Beach while I tried to figure out what "tumors" meant. Having been raised in a family with a strong medical background, I guess I should have known. Maybe it was the shock, I don't know. I remember getting to the oncologist's office before Rebecca, Zachary and my father showed up. I was given a clipboard with the various paperwork to fill out. I took it into the hallway, because my tears were interfering with my ability to answer the questions. The waiting room had several bald children. My world had just collapsed on me. I sat in the hallway, crying, trying to answer the questions while my mind raced with horrible thoughts that no parent should have to endure. When I finally completed the paperwork, I brought it into the office and handed it to the secretary. At that same moment, one of the oncologists saw me and asked, "Is that Mr. Finestone?" The secretary nodded. He immediately brought me back to his office and layed out what they suspected was going on. Zachary has neuroblastoma. It is in stage IV which means that has progressed quite far. They will be doing several tests to confirm all of this, but more than likely, he will need intensive chemotherapy, surgery, a bone marrow transplant, and radiation. And, even with all of that, his chance for survival would be around 40%.
I don't remember how many boxes of tissues I went through that morning, but I do remember at one point venturing to the back area of their offices to find more. When Zachary arrived, they were shocked to see him walk in without any help. The scans had shown them a very, very sick child. They expected him to arrive in a wheelchair.
I don't have many regrets from how we've handled things over the past three years. You can't. They will haunt your thoughts and dreams and torture you if you let them. I do regret not being stronger for Zachary that first day. I can vividly remember the look on his face as he watched me crying throughout the office visit. He did great with the needles and poking, and prodding, but he was clearly nervous because of my reaction to what was happening. If there was one thing that I could take back, it would my inability to remain strong for him that first day.
I see those first hours at the doctor's office when I close my eyes. I see them while I drive around in the quiet of my car and truck. I see them when I get ready to go to sleep, almost finding a place in my mind where I can believe that it is all just a nightmare.
How is it possible that he has endured so much, come so far, and still.....there is no cure? We remain hopeful that the Protocel is the missing link.
Three years ago today, our world changed.
Cancer sucks!
Scott
Sunday, March 16, 2003 8:33 AM CST
Hi there, we're home.
Scott
Thursday, March 13, 2003 11:05 AM CST
Congratulations to everyone that has been guessing the correct answer to the riddle. (Too many to list.) I guess I put too easy of a riddle in there. I'll have to dig deep for the next one. (If I do another journal entry.)
Zachary is still doing well with chemo. He rests afterwards and plays in the afternoon/evening.
Scott
P.S. The end!
Tuesday, March 11, 2003 8:51 PM CST
Another day, another dollar. Or in our case, another day of chemo. Zachary did very well today. We finished up by 10am and then came back and got some rest. Rebecca went and worked at Connor Moran Children’s Cancer Foundation for a few hours. We then all went down to Boynton Beach to hang with the Mathis family. Zachary played with Mitchell, and Rebecca and I got revenge for our loss to Bo and Diane in the new game Cranium. We played masterfully, and dominated the entire game. (In other words, we got the rolls this time!)
After that, we all went to the ball field and watched Mitchell play baseball. His team did great. They all hit real well, and had fun. I’m always amazed at how Zachary can watch and cheer his friends on without getting sad that he can’t be playing right now. He was real excited every time Mitchell got up to bat. I know I’ve said it before, but these kids are definitely my hero’s.
I noticed that someone posted the web page for a different Cancer sucks group. They have a really nice web page. (I’ve got to start working on ours. I’ve been meaning to buy a book that will help me learn about “front page,” the web page designing tool.) Anyway, I’m glad to see that there are other folks out there that agree with us that cancer sucks. I guess we’re not crazy. (Ok maybe I am crazy, but all of you still have a chance.)
No other news to report for today. I’ll try to update again tomorrow.
Scott
P.S. CSSTW has been bothering some folks. I didn’t even put it here as a riddle; it was more of an afterthought for my journal entry the other day. Anyhoo, it means: Cancer Sucks, Spread The Word.
P.S.S. Since you are all itching for another riddle, I guess I’ll give you one.
If an electric train is traveling from NY to FL at 100 MPH (South), and the wind is blowing North to South at 100 MPH, will the smoke from the train go back, (North), straight up, or forward (South)? You can use your calculator if you need to on this one.
Monday, March 10, 2003 12:03 AM CST
Welcome to another wonderful week of chemo!
Time sure does fly when you’re having so much fun. Between the chemo and unknown future, I can hardly contain myself.
Yesterday was a great day! We were invited to a bowling birthday party for Kaleigh, the younger sister to Mitchell. Mitchell is also a cancer patient, and is one of Zman’s best friends. A few of the other families from the CSC were there, and the kids had a blast. After the party, we went to Mitchell & Kaleigh’s house, and the kids all played for another 4 hours. Between baseball, tag, and a variety of other games, these kids kept very, very busy. For dinner, we ordered out from a local health food restaurant called “Papa John’s.” The food tasted just like pizza with pepperoni, sausage, onions and green peppers, but supposedly it was fat free and cholesterol free. (Yeah right!)
After dinner, the kids played some more, and then Bo, Diane, Rebecca and I tried out my birthday present from two weeks ago. The board game Cranium. This is a really cool game. It combines the best parts from a lot of the popular board games, and it adds some interesting twists. If you are into board games, check this one out! The Mathis family beat the Finestone family, but it was a fun close game. I think the die was fixed. Every time they rolled, they advanced like 10 spaces, while we were lucky to move 2 spaces on our rolls. (Must have been home field advantage.)
Medical News:
Chemo started this morning, and Zman did very well. He is a bit tired now, but that is to be expected. If the rest of the week goes as well as today, I will be pleased.
CSC News:
We brought the shirts and buttons down with us, so anyone that is in the area and wants to get anything, track us down at the Quantum House.
Scott
P.S. Christi wants to know what C.S.S.T.W. means. Anyone out there have any idea? (I signed my journal entry with that the other day.)
Friday, March 7, 2003 9:19 PM CST
Zachary is having a great time with his Aunt Kelly and Uncle Ian. They played together all day and evening. He is still tolerating the Protocel very well. We are hoping to continue with this high level of cooperation that he is giving us regarding this new medicine. He takes it like a champ now, without any problems.
I spoke today with Susan Griffin, the mom that got us started on Protocel. She is receiving many more hits on her son’s web page, and she is receiving more calls every day. Anyone that is interested in investigating this medicine is encouraged to visit their web page, and email or call her. She is very willing to speak with anyone that has questions. Their web page is:
www.caringbridge.org/page/jakegriffin
I want to remind everyone that there is NO reward or monetary benefit to any of the parents that are using or talking about this medicine. We are merely trying to help others become aware of it’s existence and to try and help those that are interested to begin the process of investigating it for themselves. Rebecca and have no idea how effective this will be for Zachary. I know that he has a renewed sense of purpose in his battle. He feels like he is “going after” the cancer by sticking to the four time/day regimen that he is on. This alone has made the adventure worthwhile to us. We have endured many battles with Zachary over medicines and treatments. They can easily wear you down.
Thank you to everyone that read my new novel that was included in yesterday’s journal entry. I am considering having it put on disk, so that anyone that wants to read it, doesn’t have to clutter up their homes with a large stack of papers. I must admit that it did run much longer than I had originally anticipated, but you can’t put limits on creative genius.
Scott
P.S. -----------> C.S.S.T.W.
Thursday, March 6, 2003 8:40 PM CST
We’re about 10 days away from the three-year anniversary of Zachary being diagnosed with cancer. I never mentioned this before, but I’ve been working this whole time on a book about all of this. I’ve decided to include the finished product in this journal. So, sit back, read my book, and enjoy. Here goes:
Once upon a time there was a disease called cancer. It sucked. The end.
Wow, what a relief to finally finish that novel and get it all typed out for you to enjoy. I hope you didn’t spend too much time away from loved ones, glued to your computer reading my story.
We got an email today from Zachary’s NYC doctor. He wanted an update on Zachary and he wanted to inform us that the new phase I therapy is now available. (For those of you blessed with short memories, this is the therapy that would require making Zachary very, very sick. Knocking him down so low, he would be miserable, and possible not recover. There are of course, no great numbers associated with this new and untested therapy.) I thanked the doctor for the news, gave him an update, and asked for his patience while we continue with our current therapy. I also told him about our decision to try Protocel. We may be permanently banned form returning to NYC, but I refuse to rob Zachary of the chance to benefit from something that we believe is helping many people from all walks of life. I also told the doctor that we had investigated several new therapies and that we had been informed of some new ones that are on the horizon. Hopefully he will understand the decisions that we have made.
Zachary’s uncle Ian and his wife Kelly arrived tonight. They will be visiting for a few days. Zachary absolutely loves his uncle Ian. We are very grateful that they were able to take time to come and be with us. Every visit, every trip, every outing, every party, every DAY is a blessing.
Scott
Tuesday, March 4, 2003 5:59 PM CST
How many days has it been since I got up on my soapbox and preached to the masses? (For those of you out there in computer land screaming, “IT’S ONLY BEEN ONE DAY YOU LOUD MOUTH!”) Thank you for the reminder. Anyways, I’ve got some issues today, so cut me some slack. First, I’ll begin with an article that appeared in our local paper this morning. The story is from the Associated Press, and it appears here in its entirety. Please read it first, and then we can “talk” about it.
Kid’s cancer risks targeted
The government wants to change the policy that assumes the risks for adults and infants are the same.
By H. Joseph Hebert
The Associated Press
WASHINGTON – The government proposed tougher guidelines Monday for evaluating cancer risks to children on grounds the very young could be 10 times more vulnerable than adults to certain chemicals.
The guidelines, when made final after a review by the Environmental Protection Agency’s science advisory board, would dramatically alter agency policy, which assumes cancer risks to a fetus or an infant are no greater than for a similarly exposed adult.
For the time being, the increased scrutiny would be limited to assessing a group of chemicals that damage a person’s genes by causing them to mutate so that cancer can form more easily later in life. Among these are some pesticides as well as a number of chemicals released in combustion or used in the making of plastics.
The agency said that as more information is developed, other cancer-causing pollutants, not those that cause gene mutations, might also be brought under the new guidelines if they are found to pose heightened risk to children.
How to assess cancer risk to the very young from environmental pollution has been an issue vexing the EPA for years. This would be the first time the EPA has proposed formally taking into account the differences between exposure to an adult and a baby or toddler in assessing cancer risks.
The final guidelines are to be reviewed by the EPA science advisory board in May, with a final document to be issued by summer, said Bill Farland, the EPA’s acting deputy assistant administrator for science.
The proposed guidelines on risks to children are part of a broader effort by the agency to overhaul the way it evaluates scientific evidence to determine whether to regulate a chemical as a carcinogen.
The EPA also revealed broader guidance Monday that attempts to refine and make more precise how EPA scientists evaluate cancer risks when deciding how to regulate a chemical. The new guidance would recommend that scientists give greater weight to the latest science and try to develop a more complete picture, said Farland.
Ok, I don’t know about you guys, but are these guys for real? Haven’t there been many groups, (including the tooth fairy project) that have been saying for years that children are much more susceptible to pollutants than adults? Hallelujah, the EPA is waking up! All of you parents that are not afraid to mix it up a bit should be making notes here. Write down the name of the EPA guy, check the dates, and keep on this story. Maybe some congressman and senators need a few letters written to them to let them know how important this issue is! (For those of you pointing to me right now…..I’ve got enough dragons to slay for right now…..pick up a sword.)
Ok, enough of that new battle. Now, on to insurance. We were finally approved for the extension on COBRA. (Insurance that kicks in when you lose your job.) Our original 18 months ended 2/25, and we were poised to start the conversion policy that would have given much less coverage for Zachary and Rebecca. We HAD been told we were not eligible for the extension…..those idiots were wrong. We got word last week that the extension was granted, so we have another 11 months before we lose some coverage. But, the interesting fact that I learned today is this: The original Cigna policy that we had before COBRA, covers us the same way DURING COBRA, meaning that whatever limits there were before, apply now. Well, I started to wonder what the lifetime maximum benefit for Zman is. (I know that his medical bills for the past 18 months alone were in excess of $500,000.00.) If the max. is 1,000,000.00 (like a lot of policies are, we could be in trouble. Zachary had many bills before COBRA that were with Cigna. Well, guess what? There is NO maximum with our Cigna policy. What does this all mean? Well, it means that Cigna really, really, really, really wanted us on the conversion policy. It is a NEW policy that DOES have a maximum. How convenient would that have been? “Oh, sorry guys, you’ve now been on the new policy for 8 months, and you’ve already reached your maximum…..have a nice life. You’re no longer covered.” AHHHHHHHHHHHHHHH Is there no end to the treachery these varmints will go? These scum sucking bottom feeders are on my $@&* list forever!!!
Well, I guess the good news is that we don’t have to worry about it for another 11 months.
Medical News:
Zachary is still feeling well. He has had no noticeable side effects from the new medicine. We are scheduled to be in for chemo next week.
CSC:
We’re here. Cancer sucks!
Scott
P.S. I’ve only received one guess on the new riddle. ONE GUESS. Where is Scott B? Where is Tom? Where are all of my brainiacs? The one guess I received is wrong. I will be emailing that poor soul the correct answer. And I refuse to embarrass anyone on this page, so Christi, don’t you worry, no one but you and I will ever know that you were WAY off on your guess. (wink, wink)
Sunday, March 2, 2003 11:50 AM CST
Medical News:
Thankfully, there is not much to report on this front. Zachary is still feeling well; he has not had any noticeable side effects from our new medicine. We are praying that this trend will continue. We are home again this week, and then next Sunday, we are back down in WPB for another round of chemo.
Birthday News:
Zachary had a wonderful time at his laser bowling party yesterday. We were very fortunate to have had many of his friends join us for this party. The bowling alley did a great job of managing the party, and I believe that all of the children had a lot of fun! I’ve posted one photo from the party in the album.
Reaching these milestones in our lives always brings about a small amount of reflection and sadness. We don’t allow it ruin the mood of the moment, but you can’t help but look back on how you never believed that he would reach this birthday. We are lucky and blessed that Zachary is feeling great and was able to really enjoy this time with his friends.
CSC News:
I’ve got another order of buttons arriving later this week. Anyone planning a large event where you feel you’ll want some of these; let us know so we can put them aside. T-shirts are still available in most sizes.
Scott
P.S. I got several correct answers to the last riddle. I am posting the answer below. If you are still working on it, don’t scroll down! The new riddle is below as well.
P.S.S. New riddle: You have three boxes that are labeled “Dime/Dime, Nickel/Nickel, and Dime/Nickel” respectively. All three boxes are labeled incorrectly. But, one box does have two dimes, one has two nickels and one has one of each. If you are able to reach into one box at a time and remove one coin without seeing the other, what is the least amount of coins you could remove, to correctly label all three boxes?
P.S.S.S. Old riddle answer: You take the chicken across. You go back and get the fox. When you drop the fox off, you pick up the chicken. When you get back to get the food, you drop off the chicken. You bring the food over to the side with the fox, and then you go back and get the chicken.
Thursday, February 27, 2003 6:47 PM CST
Oh boy am I ever in trouble! I always knew that my big sarcastic mouth would land me in trouble one day…..well folks…..welcome to THE DAY!
Before I go any further into my ramblings, I need to break the silence on something. I have had several inquires into what “non-traditional” medicine we are trying with Zachary. I am now going to give you the name, and later on in this entry, I will give you the web page for the mom that has been using this for her son for 16 months. The supplement is called Protocel.
Now, back to me being in trouble. Being the sarcastic guy that I am, I sort of hinted the other night that Protocel might not taste too wonderful. Evidently, a few parents called our friend and were “put off” by my comments. They were worried about giving something that was so awful. Well, now I’ve got to eat crow. (Hmmmm come to think of it….mixing it with crow doesn’t sound like a bad idea.) WHOA, WHOA….there I go again….right back into the sarcasm…….holy $%#&….I’ve got to watch myself. Ok, this is what I said the other night. “It tastes like a dog turd that has been cooked in tar, soaked in gasoline, and then chopped up and thrown into a blender with cat piss.” First let me say, that was a blatantly unfair analogy. You don’t chop this stuff up! There, I cleared the air on that one.
WHAT? You want more? Ok, ok, ok. Look folks. There have been several thousand people from 3 year olds up to 80 year olds that have used this stuff with success. Somehow, they managed to take it 4 or 5 times a day (depending on the formula.) So, do your research. Read the testimonials, call some of the patients, (many of them give their email and phone number and encourage calls,) and then, if you feel this is something you want for you or a loved one…..you WILL find a way to take it. Zachary has only been taking it for 2 ½ days, but he does not complain. (This is coming from a 9 year old that wouldn’t lick a stamp if you gave him .50 cents.) So, don’t dismiss this based on the ramblings of some 40-year-old sarcastic nutcase. I didn’t even think people were reading this nonsense.
The web page for the mom that helped us get started on this is:
www.caringbridge.org/page/jakegriffin
Susan is her name, and her email and phone number are listed on Jake’s page. I would suggest emailing her first with questions, so she doesn’t get bombarded with phone calls. She has said that currently she receives about 3 or 4 calls each day. Her web page has links to other sites with lots of information about Protocel, so do some surfing before jumping in with questions. Read about it and THEN bombard her.
We don’t know where this new adventure will lead us, but I will say this. Even though Zachary has been asking some hard questions lately. Yesterday he got all excited and said, “The new medicine is working, it’s working!” He has been a little constipated, and we had told him that sometimes Protocel can cause the cells to leave the body through the stool….he somehow connected the two unrelated occurrences in his head, and decided that the medicine is already working. I explained that it was too early to tell, but that he had the right attitude. Now, how many of you feel it is important for him to have a positive outlook like that? What kind of value can YOU put on a child that somehow finds the mindset that he WILL be healed? (These are rhetorical questions for those of you that were getting ready to type.) The mind can do amazing things. I am grateful that he has a renewed hope for a future on this planet. Remember, quality time is just that, QUALITY TIME. No false hopes, just a positive attitude!
CSC News:
We got the two new shirts (Cancer only sucks on days that end in “y”! and, Someone I care about got cancer, and all I got was this lousy t-shirt) and the dew rags in today. Many of them are spoken for, but email your order, and we will get more if needed. I had to order more buttons. The first 1,000 are about gone. Word is spreading….Cancer Sucks! (What have people been thinking all of these years…..that Cancer was just “bad”, or “unpleasant”, or “inconvenient”? Give me a break. IT SUCKS! Anyways, there is a new photo of the back of the two new shirts in the album. Check them out!
Scott
P.S. I have received 1 correct guess on the new riddle. Remember, you can only have 1 of the three in the boat with you….and you can’t leave the fox with the chicken, or the chicken with the food. (If you’re scratching your head wondering what the heck I’m referring to, check the journal history for the riddle….it appeared yesterday or the day before.)
Wednesday, February 26, 2003 7:46 PM CST
5 NEW REASONS WHY CANCER SUCKS! (As if we needed anymore.)
1). “Mom, am I going to beat this cancer?”
2). “Mom, will I live long enough to learn how to drive?”
3). “Mom, will I live long enough to go to high school?”
4). “Mom, will I live long enough to get married?”
5). “Mom, will I live long enough to do my dream job?” (This week it is to be an undercover policeman.)
All five of these question came last night before bedtime. (Anyone with dry eyes at this point is doing much better than me.)
I suppose part of the blame for his renewed awareness of the gravity of the situation falls on us. We knew going into this new medicine that we would need his cooperation. It tastes like a dog turd that has been cooked in tar, soaked in gasoline, and then chopped up and thrown into a blender with cat piss. (Some of you are probably wondering how I would come to be able to reference such a flavor……lets just say I’ve got an active imagination.)
Anyways, we needed him on the same page as us with taking a nasty medicine 4 times each day…..everyday! So, we explained that there was a chance that this would make the cancer go away. There were no guarantees, but we wanted to try. He is quite bright. I’m sure it was an easy job deducing that “trying to cure” meant, “we might not make it.” So, he has been asking the hard questions.
I’m sure someone out there can explain to me why a 9 year old (Saturday is his birthday, he’ll be 9,) should have to entertain these thoughts for one nanosecond. How is it possible that any of these children should be thinking about whether they are going to live or not? It’s bad enough that they endure the treatments, but do they REALLY have to be tortured with the magnitude of this? Is it not bad enough that as parents we live the nightmare 24/7?
You don’t have to answer that. I know the answers…..I just don’t like any of them.
Scott
P.S. The answer to the riddle about the three guys on shore is:
Guy # 1 could ONLY have said, “I am from Gol.” (If he were from Gol, he would tell the truth and state that. If he were from Gal, he would lie and say he was from Gol.)
Guy #2 points to guy #1 and says, “He says he is from Gol, and he is.” Well, the first part of this statement is true. So that makes guy #2 from Gol. He goes on to say, “and he is.” That makes both guy #1 & #2 from Gol. The third guy points to the first two and says, “They are both from Gal.” He is lying….he is from Gal. (Confused yet?)
P.S.S. New riddle time: (I need the distraction.) You are trying to cross a river. You have a fox, a chicken, and some food. You have a boat that will only carry you and one of the three mentioned items. You CANNOT leave the fox with the chicken because he will eat it. And, you CANNOT leave the chicken with the food, because he will eat it. How do you get all three across safely? Good luck…..remember…email guesses.
Wednesday, February 26, 2003 7:46 PM CST
5 NEW REASONS WHY CANCER SUCKS! (As if we needed anymore.)
1). “Mom, am I going to beat this cancer?”
2). “Mom, will I live long enough to learn how to drive?”
3). “Mom, will I live long enough to go to high school?”
4). “Mom, will I live long enough to get married?”
5). “Mom, will I live long enough to do my dream job?” (This week it is to be an undercover policeman.)
All five of these question came last night before bedtime. (Anyone with dry eyes at this point is doing much better than me.)
I suppose part of the blame for his renewed awareness of the gravity of the situation falls on us. We knew going into this new medicine that we would need his cooperation. It tastes like a dog turd that has been cooked in tar, soaked in gasoline, and then chopped up and thrown into a blender with cat piss. (Some of you are probably wondering how I would come to be able to reference such a flavor……lets just say I’ve got an active imagination.)
Anyways, we needed him on the same page as us with taking a nasty medicine 4 times each day…..everyday! So, we explained that there was a chance that this would make the cancer go away. There were no guarantees, but we wanted to try. He is quite bright. I’m sure it was an easy job deducing that “trying to cure” meant, “we might not make it.” So, he has been asking the hard questions.
I’m sure someone out there can explain to me why a 9 year old (Saturday is his birthday, he’ll be 9,) should have to entertain these thoughts for one nanosecond. How is it possible that any of these children should be thinking about whether they are going to live or not? It’s bad enough that they endure the treatments, but do they REALLY have to be tortured with the magnitude of this? Is it not bad enough that as parents we live the nightmare 24/7?
You don’t have to answer that. I know the answers…..I just don’t like any of them.
Scott
P.S. The answer to the riddle about the three guys on shore is:
Guy # 1 could ONLY have said, “I am from Gol.” (If he were from Gol, he would tell the truth and state that. If he were from Gal, he would lie and say he was from Gol.)
Guy #2 points to guy #1 and says, “He says he is from Gol, and he is.” Well, the first part of this statement is true. So that makes guy #2 from Gol. He goes on to say, “and he is.” That makes both guy #1 & #2 from Gol. The third guy points to the first two and says, “They are both from Gal.” He is lying….he is from Gal. (Confused yet?)
P.S.S. New riddle time: (I need the distraction.) You are trying to cross a river. You have a fox, a chicken, and some food. You have a boat that will only carry you and one of the three mentioned items. You CANNOT leave the fox with the chicken because he will eat it. And, you CANNOT leave the chicken with the food, because he will eat it. How do you get all three across safely? Good luck…..remember…email guesses.
Tuesday, February 25, 2003 5:54 PM CST
Pay attention boys and girls….once again, we’ve got a lot to cover tonight. I’m not threatening you with a pop quiz later, but everything that I cover here tonight WILL be on the final exam later in the year! (How many of you older folks just had flashbacks to your good ole school days?)
Medical News:
Ok, the urine results are in! There will be a $5,000,000.00 reward to anyone that can accurately and effectively interpret these results into a cohesive report that we can use as a roadmap for treatment. First, let me compliment the medical industry as a whole, for not permitting labs to have a standard scale that could be used on a national basis. It would be WAY too easy for everyone to use the same system for evaluating urine, and thus reporting numbers that could be used anywhere by anyone to monitor disease. It must have been a real group of geniuses that decided to allow this system to go on for so many years unchanged. (Ok, I am now stepping down off my pedestal.) Zachary has had his urine tested at two facilities in the past year. NYC’s lab, and St. Mary’s lab in WPB. Urine markers are not an exact science. We use a variety of indicators to tell us what Zachary’s disease is doing. In our case, the urine markers have proven to be a reliable indicator as to how active Zachary’s disease is. Over the past 3 months, the WPB lab has tested his urine once every three weeks. There are two levels that we look at, the HVA and VMA. I could go into long explanations about these, but basically, all you need to know is what the normal range is, and what Zachary’s levels are.
HVA (Normal range = 0 –15) Zachary has been running at around 26.
VMA (Normal range = 0 – 9) Zachary has been running at around 12.
When we made the decision to start this new non-traditional medicine, we knew that we would have current urine numbers to use as a baseline. This medicine can cause false high levels in some cancer markers. So, it was important for us to know where we were beginning, so if there was a change, we would be ready for it. Zachary gave his urine sample last Monday, and today we got the call. The hospital has now changed labs! WHAT? HOW CAN THIS BE? THEY WAIT UNTIL WE NEED CONSISTANT NUMBERS TO PULL THIS ON US? Let me hear you say, “Oh Yeah!” What are you going to do? Fight city hall? I doubt it. Every lab uses a different standard and testing procedure…..how convenient! Anyways, the new lab has the following numbers:
HVA (Normal range = 2.1 – 23.0) Zachary had a level of 23.2
VMA (Normal range = 1.7 – 6.5) Zachary had a level of 9.8
Ok, how in the %*#@ do we compare? We could say, “Wow, the numbers came down, look at how the HVA is almost normal now.” Or, we could say, “Oh crap, the VMA is 50% higher than the upper end of the range, before it was only 33% higher.” Or, we could say, “Screw the percentages, the numbers are lower.” Or, we could say, BOOM. (That was my head exploding from contemplating all of the variables that are possible here.) I guess I’ll concede that the results appear to show at least ‘stable’ disease. Urine markers alone don’t make a diagnosis. Zachary still feels well, and looks great! Those are both huge factors in determining where we are. Thus endith the lesson.
CSC:
I picked up the new shirts yesterday. (Photo #2 shows the new logo on the front.) The t-shirt shop messed up and printed the ‘club motto’ on the back, instead of the ‘cancer only sucks on days that end in ‘y’. So, I’ve ordered more and they should be in this week. I do have an idea that I want to run past everyone. I’ve been thinking about using the new colorful logo for a round bulls eye bumper sticker. It would be about 3” in diameter. But, because of the 4 colors, it would not be cost effective unless I had a lot printed. If we are able to make them available for $1.00 ea. (No shipping on orders of 12 stickers or more,) how many people out there in the Club would want these? They would be UV coated to last longer in the sunlight. How many could you use? If you don’t remember the logo, it is shown in photo #2 on the front of a shirt. Either email us or post it in the guest book so we can figure out if it is affordable. Thank you.
We have had many inquiries about the medicine that we have started Zachary on. I am happy to email anyone with the information about it, but I do want to stress that everyone should do their own research into any drug or supplement that they are thinking of trying. And, we are in no way making any claims or promises about its effectiveness. We believe we have found something that will give us more quality time with our son, so we have chosen to try it.
Scott
P.S. Thank you again for the continued support and prayers. We are flying high on the wings of your prayers.
Sunday, February 23, 2003 8:57 PM CST
As I sit here contemplating this evening’s journal entry, I can’t help but think that we have reached a crossroads of sorts. There have been many times during the past three years that we have had to face the demons that have crept into the lives of many families in our position. Listening to experts, doing the research, and eventually making the hard decisions that none of us ever dreamed we would be facing. I have spoken recently about how we don’t know how much time this current chemotherapy will keep working to keep the cancer at bay. Several doctors have reported to us that when children like Zachary get a benefit from this drug, it typically lasts between 7 and 12 months. There are no absolutes. Zachary has been using this chemo for 6 months. We are waiting for urine results that should be in tomorrow. Zachary’s cancer could start progressing again now, or it could stay at bay for another 12 months….no one knows. There is NO crystal ball with this disease. So, we have worked diligently to find an alternative therapy that we could turn to once this one has run it’s course. Sadly, we have either been turned away because of conditions beyond our control, or, we have discounted therapies because they are too strong in the “pain & discomfort” department, and too weak in the “results” department. Right about now, some of your are wondering, “Why not just keep doing this chemo? Zachary is doing well on it, he may get many more months.” We do plan on staying with this chemo for as long as possible. The problem with not having a plan of action in hand is this: Once this chemo stops working, we will be faced with a cancer that is progressing around chemotherapy, looking to finish the job it started out on three years ago. If you don’t have another therapy to turn to, you lose very valuable time, AND, you reduce the chances of future therapies from buying you quality time. An example of this happened to us 2 ½ years ago. Zachary had about 95% cancer in his bone marrow when he was diagnosed. With the help of much chemotherapy, we slowly were able to knock it down lower and lower. Zachary’s marrow was tested on a regular basis so the doctors would know how effective each group of chemotherapies was. After one such test, his marrow showed 10% cancer. He was scheduled to start more chemo, but he developed a fever that delayed us for 14 days. [14 DAYS] When he was well enough to restart chemo, the doctor insisted on another marrow test. They needed to know what level the disease was before starting the chemo. After just two weeks, the marrow level had tripled to 30%! Very scary. The news from the doctor was devastating. “It doesn’t look like we’ll be able to control this disease enough to get Zachary into a transplant.”
Zachary of course made it to transplant later that year. But, the moral of the story is, once this disease starts growing, it grows with a vengeance! So, back to being at a crossroads. Well, over the past three years, we have heard of many non-traditional therapies for cancer. One has you take your child to Mexico for some bizarre treatment. (That one was actually just in the newspaper…they were shut down by US, Canadian, & Mexican authorities.) Another is some silver treatment in Canada. Our doctor told us that it would kill Zachary if we tried it. There is yet another in Texas that costs $30,000. This one is supposedly a hoax as well. The list goes on and on and on. There are many people out there that will prey on parents that are desperate to keep their child alive.
One therapy that we had heard about several months ago intrigued us. We asked one of our doctors about it, and he felt that it would not help, or hurt Zachary. In other words, if you want to try it, go for it. We were caught up in trying to get into the NYC program, so we put it aside. Recently we had the pleasure of meeting two families that have been using this supplement for over a year. Both families have a son with non-curable brain tumors that are fatal. The one family was given two weeks….that was 12 months ago. The other, they have been going for 16 months. So, why isn’t everyone using this “miracle” cure? Well, it’s a long story. It reads like a conspiracy theory novel, but we have personally met two families that are benefiting from it. It is a liquid that can be given while we are still doing the chemotherapy. It should not have any major side effects. Having come from a very scientific and logical background, I find myself treading in new and uncharted waters. As a father that has watched his son go through unspeakable treatments to fight a monster of a disease, I am praying that this IS a miracle cure that just somehow slipped through the cracks. As a man of logic and math and science, and all that is orderly and explainable in this world, I worry that I am setting my family up for disappointment. I have ordered the medicine. It is very affordable. The people making this stuff are not getting rich from it. Their story even recounts a period of years where they gave the medicine away, just to keep it available to people fighting cancer.
I am not looking for approval or criticism from anyone on this. I am only revealing this story because of how strongly I feel about having all of you join us in this journey. It would be impossible for me to write accurately about the coming weeks and months without having mentioned this new development. We do value your thoughts and prayers. One of the parents that has been using this medicine recently told me about how she had posted their story on a brain tumor web page. The other parents were very critical and borderline “militant” in their position against such treatments. She warned us that there would be those that are offended by the use of non-traditional treatments. I am in no way selling, promoting, or benefiting financially from any of you that may want to look into this medicine. I purchased enough to get us through about 4 or 5 months. We should know within 3 months or so if it is helping. I will gladly forward the web page to anyone that asks. You can do your own research. There are many families that are willing to talk about their experiences with this medicine. Rebecca and I are praying that one day soon, we will join the ranks of those that have received a miracle from taking this.
Scott
P.S. Before you go asking. We did run this by one of our doctors. He not only has 8 or 9 patients that are using it, he has a personal friend that is using it.
Saturday, February 22, 2003 3:04 PM CST
We are once again, home!
Zachary had finished his chemo yesterday, but we stayed one extra night at the Quantum House to cover for the house manager who was away for one night. Zachary had a good day, with the exception of the ride home. He was sleeping in the car, and woke up vomiting. All he had for breakfast was orange juice, so that (along with some ripe stomach acid) is all that came back up. Fortunately for us, my back seat caught the majority of it, thus protecting the side of the road. It’s a good thing he wasn’t able to give us any notice, because if that had happened, he might have ruined one of the pristine plastic bags that were laying within arms reach……and that would have been a disaster. We all survived, (including the car seat) and made it home around 11am. As soon as we got home, Zachary was hungry. He’s felt fine ever since.
CSC:
The t-shirt shop never answered their phone today, so I guess it will be Monday before I can post photos of the new shirts. I did get a new battery in the Honda, so the day wasn’t a total loss.
Scott
P.S. We are home for two whole weeks before returning to WPB for another round of chemo. I have not yet received the urine results from this past round. I am hoping to have them tomorrow or Monday. As always, as soon as I know…you’ll know.
P.S.S. New riddle time. (Where was Scott B. on the last one?) You are on a boat, trying to make your way back to shore. There is a heavy fog, and only one way to get through the deadly reef. On shore, there are three men standing, waiting to offer directions to get you to safety. The problem once again is, some of the natives lie (always), and some tell the truth, (always.) The natives that are from the village Gol, always tell the truth. The natives from the village Gal, always lie. You scream to the first man and ask, “Which village are you from?” He replies, “I am from G….” And his response is lost in the wind. The second man points to the first and says, “He says he’s from Gol, and he is.” The third points to the first two and says, “They are both from Gal.” Which man is from which village? I know this will be easy for some and difficult for others….such is life.
Friday, February 21, 2003 3:09 PM CST
Medical News:
Chemo is done! Another week under our belts. We are staying here at Quantum tonight to watch the house for the manager who will be gone for one day. Zachary is already de-accessed, so he is happy not having a needle in his chest. (Weird how little things like no needle can make a kid happy.) We will be leaving early tomorrow to get home and unpack. Zachary still feels well, no complaints, other than being bored. What else is new?
CSC:
There is a small chance that the t-shirt shop has Saturday hours, if they do, I will pick up the shirts and get a photo up on the page. Don't hold your breath.
Scott
P.S. Ok, I got two guesses that I "think" will work for the new riddle. They were unconventional ways around the problem......AND, they were so confusing that I had to use three computers to plot the answer and see if it works. Hey folks, I didn't mean to blow your circuits or anything. The answer to both riddles appears below. If you don't want to see them....ahhhhhhh....don't look!
P.S.S. Riddle #1, the squares with letters. If you start with the letter 't' in the first box on the left, and work your way around that box and then into the next box, you will get the words, "This puzzle is made of squares."
P.S.S.S. The question for the native is: "Which way to your village?" If he is from the good village, he will point to safety, and if he is from the bad village, he will point to safety.
P.S.S.S.S. I've got another one, but I'm too lazy to type it in right now, so you'll have to wait until I get home.
Wednesday, February 19, 2003 4:18 PM CST
I was just getting ready to start this update, and my cell phone rang. (brrrring, brrrrring) {you get sound effects now!} Anyways, the doctor from CA called back and was nice enough to talk with me for about 15 minutes about Zachary. First of all, Zachary is NOT eligible for the phase I therapy that we were interested in. He has received slight levels of radiation to his kidneys, and this is not allowable for this treatment. The doctor discussed some of the therapies that I’ve been researching, and basically we’re looking at staying on what we’re doing for as long as possible. There is the drug from CA that I’ve spoken about before, it is still available on a compassionate basis, but I would rather not go there yet. The doctor did have some interesting news. Some of the children that are on the same chemo as Zachary, have switched back to a chemo that he was on before, once faced with an ineffective chemo. Some of these kids are having continued success with this approach. It would mean staying on our current drug until it fails, and then, going back to inpatient doses of nasty stuff that knocks him down hard. The only other ray of hope that he offered came in news of an upcoming meeting of doctors next week. There are a few very new treatments that are within 1 or 2 months of starting that are specifically designed for relapsed neuroblastoma. These new treatments are approaching the problem from a whole different angle, and will probably provide prolonged life for many kids in this boat. Welcome to a whole new kind of waiting game.
I wish there was more exciting news on the medical front, but sadly we are still fighting a clock that refuses to slow down.
CSC:
Well, we’ve been down in WPB for several days now. So, I haven’t had a chance to see the new shirts that were finished the other day. We will be home on Saturday, but the shop doesn’t open until Monday. I’ll have pictures up as soon as possible.
Riddle News:
The old riddle that is pictured in the photo album has not produced any more guesses. For those of you that wanted a clue, hmmmmmm let me see. Well, I would say that when you see letters in a riddle, they usually are there to form words. Work your way around those letters and see if you can’t solve the mystery.
The new riddle has proven to be quite the tough one. I have only received one guess so far, and it was wrong! I will re-post the new riddle at the end of this journal entry.
Scott
P.S. Here she is:
Your plane crashes in the jungle. You are trying to walk out to safety when you reach a fork in the path. There is a native standing there at the fork. One path leads you to the cannibal tribe that will surely eat you, and they ALWAYS lie. The other path leads you to a friendly tribe that will get you to safety, and they ALWAYS tell the truth. You don’t know which tribe he is from and you can only ask the man one question, the answer to which must give you insight as to which path to take. What is the question? Remember, no guesses in the guest book, only email.
Sunday, February 16, 2003 8:21 PM CST
Anyone freaking out because I haven’t updated the page in a day or two? Sorry about that folks. Well, lets see, where did we leave off? Oh yeah. Well, Saturday we had the annual carnival at Zachary’s school. There were some great games and prizes, but most importantly, Zachary got to see a lot of his friends, classmates and teachers that have been keeping us in their thoughts and prayers. After that, we got home and I received a call from my brother in Memphis. I was surprised to learn that my sister-in-law and my nephew and niece were due to arrive in Orlando that night for a 3 day visit. She had some business there, and was able to bring the kids down for some fun. We made some calls and found the last room in Orlando. (Daytona 500 uses up all of the rooms.) We headed out the door, got some gas for the trip, and the car wouldn’t start back up. I impressed Zman by single-handily pushing the Honda into a parking spot out of the way. A nice man jumped started us; we turned around, went home, and switched cars! Once again, we headed out and got into Orlando around 7:00pm. This morning we met up with them for breakfast and then took off for a great day at SeaWorld! Zman got to hang out with his cousins and have a great time. The shows were wonderful as always, and the weather provided us with a nice day. We got home around 5:30pm, packed our bags for WPB, and headed out the door. Our good friend Benji had called, and he treated us to dinner. We just got back and checked into the Quantum House, 9:00pm…..time for bed. Too much excitement for this old man!
Medical News:
Zman felt great all weekend. Hopefully his counts will be high enough for chemo tomorrow.
Cancer Sucks Club:
Rebecca wore her button and/or t-shirt all weekend, so we got lots of comments. One of the SeaWorld employees asked for the web page so she could order buttons. Our CSC family is growing!
Congratulations to everyone that got the riddle right. I was hoping to stump you geniuses with that one. Hmmmmmm, I guess I’ll have to try again!
Scott
P.S. New riddle…..(The old one is still in the photo album for anyone to check out.) Ok, here goes:
Your plane crashes in the jungle. You are trying to walk out to safety when you reach a fork in the path. There is a native standing there at the fork. One path leads you to the cannibal tribe that will surely eat you, and they ALWAYS lie. The other path leads you to a friendly tribe that will get you to safety, and they ALWAYS tell the truth. You can only ask the man one question, the answer to which must give you insight as to which path to take. What is the question? Remember, no guesses in the guest book, only email.
Friday, February 14, 2003 10:59 AM CST
(Go view the #3 picture before reading any further.)
Well, what in the world is this all about? Hmmmmmmmmmm…..it looks like a new riddle. For all of you that hate riddles almost as much as you hate cancer, I was inspired to put this one here by Scott B. He mentioned to me the other night how much he likes riddles. Now, old rules still apply. If you already know the answer, there is no need to show off and tell me. If you want to guess, please email me. DO NOT post the answer in the guest book. Good luck!
Medical News:
Zachary still is feeling great! We are keeping our fingers crossed (very difficult to type while keeping your fingers crossed,) that his counts will remain high enough to start chemo on Monday morning. We are scheduled to do the entire week at the doctor’s office. If all goes as planned, we should be out of there each day by 10am! Wow, what a difference from the days of spending 6 or 7 hours at the hospital! I’ll keep you posted as to how it all goes.
Cancer Sucks Club:
Not much new to report here. T-shirts are due to be done early next week. Dew rags should arrive any day now. Cancer still sucks…..in case anyone wasn’t sure. I was going to do a poll to see how everyone felt about cancer sucking…..but then I realized that if someone actually voted against the notion that cancer sucks…..I’d have to open up a can of whoop ass on them.
My birthday has come and gone…..I did get many wonderful cards. Thank you! I am somewhat curious as to who sent the card signed by, “CSC…Cancer Sucks Club." It could have been several of our nutty WPB friends. I don’t want to go around pointing fingers at which friends from WPB we consider to be nutty….that wouldn’t really be fair to Kathy, Diane, and Michelle. (The writing is definitely feminine, so if it was a man…I’d keep quiet about owning up to having sent the card.) Anyways, I appreciate the card and the challenge of figuring out who the mystery author was. Rebecca now gets a kick out of telling everyone that I’m in my forties and she’s still in her twenties. There is only 13 years separating us, but she’ll get some mileage out of it. Hey, what can I say? I like those middle aged girls…you know…..18 –27.
Scott
Wednesday, February 12, 2003 8:20 PM CST
I spoke the other day of the mysterious time-space continuum. Well, that’s where I was! Lost somewhere between 40 years of age, and 40 years of age plus one day. It’s definitely one of life’s black holes.
In case you missed my post on Monday……..I’m not going to rehash….go back and read it you lazy bum!
The news coverage was pretty intense. It was the top story on all three networks at 5pm. It also led at 6pm. And by 6pm, the reporters had done their homework and found statistics from the tooth fairy project that showed very high levels of radiation in the teeth of children from this area. They also listed the 800# for any parents wishing to have their children’s teeth checked. Another station was interviewing people that live around the plant, that was interesting. A lot of support for us, and a lot of folks worried about their families. Things REALLY heated up at 10pm. That coverage included an interview with another family that is preparing to file suit as well. They found yet another family to interview by 11pm, and there was talk of several families that are preparing their cases.
All of this bodes well for us. The focus that was on our family earlier in the day, quickly got moved to where it belongs….on the power plant. Now that there are many other families involved, it will be difficult for the power company to dismiss this story as, “One misguided family.” Time will tell!
Medical News:
Zachary has been feeling well these past few days. We are hoping his counts remain high enough to restart chemo again on Monday morning. If all goes well, he will be doing chemo Monday – Friday. I will keep you updated as always.
Cancer Sucks Club:
I am waiting for the new order of t-shirts to arrive. Meanwhile, I ordered 24 white dew rags. These will have the new logo screen printed onto the center of them, right above the forehead. Anyone interested in these classic head pieces, email me. They will be $10.00 plus shipping. I am told that they are one-size-fits-all.
Scott
Monday, February 10, 2003 1:26 PM CST
Well, here we are. Monday afternoon around 2pm and have I got news for you!
Today in Federal Court, a lawsuit was filed on behalf of Zachary against the company that operates the local nuclear power plant. There was a press conference that we attended where local papers and TV were given copies of the lawsuit and where our attorney gave a brief summary of what brought us to this point. I had prepared a statement that our attorney read to the press. Here is the rough draft of that statement:
“Zachary was diagnosed with cancer in March of 2000. Immediately upon being admitted to the hospital in WPB, we were made aware of the abnormally large amount of families that have children with cancer from the Port St. Lucie area. Over those first few months, we became aware of the study that took place in the late 1990’s in St. Lucie County that was unable to find an answer as to why so many children were getting cancer. We then learned of the tooth fairy project and how they were testing baby teeth to look for levels of radiation. We became curious as to how Zachary’s levels would come back. We had his teeth sent off for evaluation, and the results showed extraordinarily high levels of the type of radiation that comes from this plant. We began working with Nancy La Vista from the law firm Lytal, Reiter, Clark, Fountain & Williams that year, and handed over the investigation to their able staff. Zachary endured an extremely difficult chemotherapy protocol in 2000, followed by a harvesting of his stem cells, major abdominal surgery to remove the primary tumor, a stem cell bone marrow transplant, radiation and special medicines to assist him with getting into remission. We were very fortunate to enjoy one year of remission, most of 2001. Sadly, Zachary relapsed in February of 2002. For the past year, Zachary has been receiving chemotherapy approx. one week out of every three. We have also traveled to NYC to have him evaluated for a special treatment that is being done there. Currently we are considering several different options that have the chance of buying us more time while we wait for a cure. We appreciate the magnitude of this story and the public’s interest in how it affects them. We are filing this suit to make things right for all of the families that have been affected by this, and to prevent any other families from having to go through this. We are asking that all inquires for further information be directed to Nancy La Vista at 800-654-2024 and that we be left to take care of our son. Thank you.”
Our attorney then answered questions, and then I did a few brief interviews. The story has already led the 12pm news locally. It will be on the evening and night news, and all of the newspapers from Vero Beach to West Palm Beach were represented. There is supposed to be an Associated Press interview later today.
I wanted to write about this mainly for all of our local families that will hear about it and wonder how it affects them. Well, I don’t have all of those answers. Certainly, anyone interested in pursuing this for his or her family is encouraged to contact Nancy La Vista at 800-654-2024. The firm will work with your family to determine what levels of radiation your child has in his or her teeth and bones. We are NOT moving from the area. Moving will not remove the radiation that we believe came from this power plant. As many of you know, a large portion of “quality of life” can be measured in how your child responds to the medical caregivers that they deal with. Zachary’s level of comfort is clearly at it’s highest when we are in WPB getting treatment. He does well when we travel to NYC for evaluation, but the nurses, doctor and staff from WPB have a three-year history with him. We have added a special reverse osmosis filter to our drinking water; we are told this will remove the radiation from that source. If you want to learn more about the tooth fairy project, there is a web page that has lots of information. www.radiation.org. This site has loads of data and information about this topic.
As we prepare for the onslaught of press and news coverage, the overwhelming thought that runs through my mind is:
YOUR CHILD GETTING CANCER IS A CRAPPY WAY TO HAVE THE LIMELIGHT FOR 15 MINUTES!
(Many of you in our position know this already.)
Scott
P.S. Thank you for the birthday wishes….tomorrow IS my 40th. There must be some sort of space/time continuum that I’ve crossed….I can clearly remember just a few weeks ago being like 20 or 23…..I must have blinked and missed a few years.
P.S.S. The new logo is still in the photo album, 3rd picture.
Sunday, February 9, 2003 7:13 PM CST
Well, I said I’d be back Monday, and here it is Sunday….one day early. Why am I returning to the trenches a day early? I don’t know, I guess I missed everyone. (Yeah right!)
Check out the photo album after reading this update, the third photo shows the winning and now revised logo. Once again, we all owe a debt of gratitude to Joe Rommel for working so hard on this for us. Please visit his son Ryon’s page and let him know that you are thinking about their family, and that you appreciate his efforts:
www.caringbridge.org/fl/ryonspage
There will more than likely be an early post tomorrow, around 12pm. I have something that I want to talk about on here that I have been unable to discuss. Please bear with me as I work through a proper way to present the information that I want to pass along to everyone. Thank you for your patience.
Zachary had a very good weekend. Yesterday, I took him to Books A Million for the weekly Yu Gi Oh meeting. Many kids show up for this every week. Zachary has one friend in particular that he was hoping would be there. Unfortunately, they were not feeling so well and didn’t want to take a chance at passing any illness onto us, so we will hopefully hook up with them in a week or so. Zachary did play an older boy who was using life points, a concept that Zachary has not mastered. The older boy proceeded to trounce Zachary in a matter of minutes. It wasn’t pretty. During the game, he used some special magic card that allowed him to temporarily confiscate one of Zachary’s cards. At the end of the game, Zachary was getting up to walk away when I noticed that the other boy had not returned Zachary’s card. It was only his best and most valuable card. Blue Eyes White Dragon. He thanked me for the next 6 hours. Ahhhh the adventure of Yu Gi Oh.
Today, we went to church (we’ve missed 5 weeks because of treatment, travel, and camp.) It was really nice to see everyone. When the pastor called the children up for their weekly lesson in front of everyone, Zachary was given a special welcome back. He even talked in front of everyone a few times while responding to the pastor. During the final prayer, he asked that everyone keep Zachary and our family in their prayers. We are very lucky to have found such a wonderful group of people that have taken us in and made us a part of their family. After church Zachary and one of his friends from school that attends the same church, went bowling, and then out to dinner with his family. ( That last sentence is full of broken or hanging whatever’s….I’m just too tired to fix it.)
Have a great evening and we’ll be updating tomorrow.
Scott
Friday, February 7, 2003 10:21 PM CST
Here we are at bedtime on a Friday night. Zman, Rebecca and I just got home from seeing Shanghai Knights. It was funny. I’ve thought about this journal entry all day, trying to figure out how to give an update without sounding upset. Unfortunately, it ain’t gonna happen.
Medical News:
Last night I spoke with the doctor from CA about the study/medicine that we are interested in. The numbers she gave me were not too exciting. I did appreciate her taking the time to discuss some of the many protocols that are out there. This doctor is very knowledgeable and she has many contacts around the country doing research with a variety of new treatments. The common theme that was sadly repeated to me is, “There is currently no cure for your child.” That pretty much sums it up folks. All of these studies that we’re looking at have experienced some level of success with some patients. Putting that success into numbers, is near impossible. Every child with this disease reacts differently, and progresses differently, so it is very difficult to compare results from one patient to another. The drug they are using has been tried on 39 children that have the same disease as Zachary. 16 of those got what they call a “positive response.” Meaning, they were able to complete at least 8 rounds (or 24 weeks) before seeing progression of disease. So, about 40% of the kids “may” have gotten something out of the drug. It is now on the verge of becoming a phase II study, meaning that they will look more closely at how well children respond. During phase I, the primary goal is dose escalation…..or, how much of the drug can we give the patient without hurting them. Most phase I patients are on their last resort.
After discussing this drug, the doctor informed me of another study that is being done at 8 hospitals. There are some very specific rules regarding eligibility. We are currently researching some of Zachary’s past treatment to determine whether he is able to participate in this study or not. If he is, it would take us to Philadelphia, and we would probably go for it. If not, we’re leaning towards continuing our current therapy until it has run it’s course, and then getting the drug from CA on a compassionate basis. (If the study hasn’t opened as a phase II, they will send the drug anyways for children that are progressing without hope.)
The CA doctor has been using the chemotherapy that we are using for quite some time. Her experience with it shows that the children that do respond, usually get between 7 months and a year. Depending on many, many factors that can’t be used to pinpoint a prediction for us. We have been using this drug for 5 months by itself, and for 7 months if you count the two rounds that we did with cytoxan.
All of this of course sucks….in case anyone was wondering. I just tucked Zachary into bed, and when I do this, I can’t help but wonder what is going on inside his fragile little body. Is there a war going on between the disease and the residual chemotherapy? Who is winning? Is the disease gaining ground? I hate this. I hate that there are no clear choices. I hate that he has to endure treatments like this probably for the rest of his life. I hate that my mind allows me to wonder whether he’ll reach his 10th birthday. (He turns 9 on March 1.) I hate that I can’t find a way to help my son beat this monster. I hate not knowing how long we have on this current chemotherapy. I hate that every time we think we’ve found an option that we can live with, the axe falls and we learn of horrible side effects or less than desirable success rates. I hate having to go to bed at night with a little less hope than I woke up with.
We hope to spend some time with friends tomorrow, and then on Sunday, we will go to church. We’ve missed church for 5 weeks because of chemo and traveling.
Scott
P.S. I apologize for the lack of humor today. I usually get my laughs, by thinking of ways to make all of you laugh. I just didn’t have my A-game today folks. See you Monday.
Thursday, February 6, 2003 2:33 PM CST
(Ding, ding) Round 2.
For those of you feeling slighted by my lack of a journal entry yesterday. Guess what? I DID type a wonderful entry that could easily have won awards for the best journal entry ever. However, Caringbridge had some internal problems that caused many users to lose all new information that was entered after 11:50pm on Tuesday. So, my entry is gone forever! I know that I should be writing these in a program like Word, so that I don’t encounter this problem again, so as of today, I am playing it safe!
Now, I’ll make an attempt to dig into my near 40-year-old brain for all of the wit and sarcasm that accompanied my lost journal entry. I wonder if 50 years from now, someone will find that entry and sell it like a “lost Beetle’s album.” Anyways, here goes nothing……
Medical News:
Well, I am STILL waiting to hear back from the CA doctor regarding details of her study. I’m convinced that if the numbers look as good as the other options, we’ll go with the medicine from CA. We can do it at home, and it has very few side effects. If Zachary gets a good response from it, he can continue it for up to 30 rounds. That’s 90 weeks!!!!
How great would that be? No chemo and a healthy child for almost 2 years, AND the possibility that the disease would leave us forever……you never know.
Cancer Sucks Club:
Yesterday I was on the road for my business. While I drive the highways of South Florida, I tend to do a lot of thinking. This can be a bad thing for all of you, because once I start getting ideas, they usually end up here in the journal entries. I’ve come up with a bunch of ideas for the t-shirts. First of all, I need to announce that I’ve made a decision regarding the logo. I know I promised to put it to a vote, BUT, I’ve exercised executive privilege and made a choice to expedite the next order. I want to first thank Juliet and Marjie for taking the time to come up with some great ideas. However, I chose Joe’s design. I ended up making some changes, but Joe was great at working with me to get the changes put into place. He has his hands full right now. Ryon is back at Duke to get treatment for his infection, so Joe is holding down the fort. Thank you Joe for your help!
So, the new logo is on a disk at the t-shirt shop getting ready to have a screen print made from it so it can be on the pocket of all shirts from now on. I still have 11 shirts left that have the original wording on the pocket, as shown in the photo album. Now, onto where all of you come in. I’ve decided that I need your input, (promises, promises) on which of my crazy ideas you like. Of course, I’ll probably do whatever the heck tickles my fancy anyways, but I figure it goods for morale in the club to try and include everyone in these decisions. I’ve got 7 different “sayings” for the back of the shirts, including the one that is currently being used. What I propose is this. I will list and letter each of the ideas A thru G. I will provide a custom designed rating system (this ought to be good,) and you can post in the guest book by designating a letter, with a rating. An example appears below. The rating system will work as follows:
The scale will run from 1 to 5. This is how you choose a number.
1 = Scott is whacked on this idea. Not only would I NEVER wear that shirt, any friend or family member caught wearing it will be asked to leave my house!
2 = Scott must have breathing exhaust fumes while writing this one, BUT, I won’t kick anyone out that is seen wearing it. You just won’t see me in it too often.
3 = Ok, I’ve seen worse. I might be tempted to wear this one, but probably only in winter months while traveling up North so I could cover it with a sweater or jacket.
4 = Now we’re getting somewhere. This is a good example Scott’s insanity. I would wear this shirt without being too self-conscience.
5 = WOW! What an idea. Every person in America should have to wear this shirt at lease once each week! (Maybe a little over the top, but you get the idea.)
The ideas are as follows: (Remember, the new logo will be on the pocket, these sayings will be on the back only.)
A). Cancer Sucks! Spread the word.
B). Cancer only sucks on days that end in “y”!
C). Someone I care about got cancer…..and all I got was this lousy t-shirt!
D). I hate cancer…..one day at a time!
E). Club Motto: Cancer sucked yesterday. Cancer sucks today. Cancer will undoubtedly suck tomorrow.
F). Having cancer is like having a party. Only there’s no music or fun, and it sucks!
G). Doctor’s office visit co pay……… $ 20.00
Full body MRI scan…………………………....$ 5,400.00
5 days of chemotherapy……………………..$ 16,800.00
Bone marrow transplant…………………… $350,000.00
Finding a cure………………………..PRICELESS!
Example of rating: A-5, B-5, C-5, D-5….you get the idea.
Do what the democrats say, “Vote early and vote often.”
Disclaimer – The owners and management in no way endorse one political party over another. We are not trying to incite a political debate in any way, shape or form. Further, we do not endorse the rantings or ravings of Scott. He is solely responsible for all of the content on this page.
Monday, February 3, 2003 8:08 PM CST
Numbers, numbers, numbers....who's got the numbers?
Everything seems to revolve around the numbers. How old were you at diagnosis? What stage were you? How many white blood cells did you have? What were your platelets? How much disease was in your marrow? What were your urine levels? How many tumors did you have? How many lesions? What are our chances? How many kids have had this disease? How long has this therapy been around? How long will we be in the hospital? What is his temperature? What does he weigh? How tall is he? How much hearing has he lost? What is his oxygen level in his blood? What is his blood pressure? It goes on and on and on and on and on.
So, you want numbers? You're not numbered out yet? You need new numbers to compare to your old numbers that were compared to even older numbers? Do you file your numbers so you can take them out and cry over them? Or, do you just let them slip quietly into the night with the other bad thoughts and memories that you hope will leave your brain forever?
Well, how about we play a number game. That would be fun, right? Something different...you know....mix it up a bit. Ok, what should we play? How about this one. I'll have you think of a number between 1 and 10, and I'll try to guess what number you chose. (Ten) Now, there should be some scale associated with this range....hmmmmmm (ten). How about this. (Ten) Number 1 will represent the low end of a sanity scale. If you feel I am a 1, (ten) then you feel that I am sane and calm and have nothing to (ten) worry about. On the other hand, (ten) if you feel that I am a 10, then you are saying that I am off in lala land with anxiety, stress, (ten) and general nutso behavior. Ok, now take your time, (ten). Don't rush into a choice (ten), you've got lots of numbers (ten) to choose from. Ok, how about a time (ten) limit here....I'll give you...
...lets say, (ten) 10 seconds! So, count it out and (ten) choose your number. Then, (ten) I get to guess what (ten) number (ten) you've (ten) chosen (ten.)
Hmmmmmmmmmmmmmmm, this is trickier than I thought. Maybe I shouldn't jump into a guess. Maybe I should give all of you a chance to respond in the guestbook with your opinion of where I fall in the richter scale of sanity. People loves polls. (At least that's what a poll on CNN said the other day.) I'll take the average of the first 20 responses. (For you non-number folks. That means that I'll add up all of the first 20 numbers submitted, and then divide by 20 to get an average. If all goes as expected, the final number should be somewhere between 9.99999999 and 10.
Medical News:
You guessed it.....more numbers. The HVA from NYC came back at 33. What does this mean? Well, it IS improved over the last (9/02) test from NYC, so that is good. However, it is 32% higher than the WPB results from two weeks ago. So which is correct. The NYC doctor obviously feels they have a good trend, with improvement from each of the rounds....BUT, the VMA from NYC came in lower than the WPB one, so why didn't the HVA play along as well? Ahhhh the mysteries of life. Isn't this a blast? Are we having fun yet? No? Well come on you party poopers.....don't hang your heads down low....cheer up.....we're done playing the waiting game for two weeks, so there is that! AND, now we get to play the "MAKE THE RIGHT CHOICE OR ELSE" game, and we ALL know that is THE game to play.
Scott
P.S. Nothing to see here....move along...move along.
Sunday, February 2, 2003 12:31 AM CST
Yes, we are home! We finished up with chemo today with no excitement. This is a good thing. Now, we’ve got a lot of things to cover today boys and girls, so sharpen your pencils and pay attention…..I don’t want to have to repeat myself.
First, lets begin with the medical lesson for the day. I don’t want to bore everyone with lots of details regarding the various treatment protocols that we are considering, however, I did want to share excerpts from one of the studies to give you a better understanding of what we are facing. The one that I will be quoting from is being done in Philadelphia. It is a promising study that is showing a benefit (whatever that means,) in just over 50% of the 90 children that have tried it. On page #1, there is a paragraph titled:
WHY IS THIS STUDY BEING DONE? (The answer they give….)
This study is being done to determine if high dose 131 I-MIBG at a dose of 18 mCi/kg is a safe and effective treatment for relapsed or resistant neuroblastoma.
Currently there is no known effective treatment for your child’s type of cancer. We want to see if we can more effectively treat your child’s type of cancer with a new experimental treatment plan. This experimental plan uses 131I-MIBG given at high doses. The dose may be high enough to permanently injure your child’s bone marrow and therefore many research participants will need a stem cell transplant.
Ahhhhhhhhhhhhhh, what great news they delivery……I especially like the first sentence in paragraph #2…..”Currently there is no known effective treatment for your child’s type of cancer.” That pretty much sums it all up, wouldn’t you say? Ok….lets not get bogged down now children, we’ve got lots to cover…..moving right along to the end of the study. They have a helpful paragraph that reads as follows:
ARE THERE OTHER TREATMENT OPTIONS?
Yes, there are other options for treatment. Instead of being in this study, other options include:
1). Treatment with an intensive chemotherapy regimen and stem cell support without 131I-MIBG. (Been there….done that….no thank you.)
2). Treatment with chemotherapy or other agents that do not require stem cell support. (Ahhhhhhh duh. That is what we are doing now.)
3). Other experimental therapies. (Ok….fair enough…we’re looking into those now.)
4). No therapy at this time with care to help your child feel more comfortable. (This is death, for those of you that weren’t sure.)
Your child’s doctor will talk to you about these other treatment options.
(Not likely…we’ve pretty much had to figure it all out on our own.)
So, are you keeping up everyone? Making good notes? There may be a surprise exam on all of this at a later date.
To summarize, we are looking at several options that include NYC, Philadelphia, and two treatment plans that allow us to stay home. I’m trying to get more information before deciding. It’s like having a party…only there’s no music or dancing….and yes you guessed it…..it sucks!
Now, on to bigger and better issues. Speaking of things sucking, we’ve recently had some dissention in our ranks. I’ve seen at least three or four entries from faithful club members asking about a “less harsh” word than “suck” that could be used on shirts and buttons so kids and squeamish folks could wear them. Well, hmmmmmmmmmmm…..this sounds like a job for our executive board. You remember them don’t you? Jeff, Kathy, Scott and Ruthie. Well, I spent several days with Jeff last week while we were down for chemo, and I’m here to tell those of you that haven’t met him, he’s a large man! I really don’t see ME being the one to try and convince him that cancer doesn’t suck, it only stinks. He’s liable to hurt me….permanently! You know, the kind of hurt that takes years of physical therapy and drinking through straws…..NO THANK YOU! Then, there is Scott. Well, I really don’t know Scott too well, but he could easily be the type that looks quiet and easy going, only to turn into Sean Connery from the movie The Presidio. He’ll be smiling coyly at you right before he says, “I’m only going to use my thumbs.” Then you find your adam’s apple sticking out the back of your neck…..HECK NO……not for me thank you. Of course there is always Ruthie and Kathy…..HEY, I’m no wimp or anything…..but I’ll be 40 years old in 9 days….us older folks tend to bruise. I see one of them holding me down while the other is beating the daylights out of me.
The bottom line here folks. I didn’t put the “sucks” into this club….the disease did. Anyone that wants my blessing to print more politically correct buttons or shirts, you’ve got it. I’ll stick with what I’ve got. No offense to those of you that asked for a change, but my anger towards this illness is not likely to abate anytime soon.
Scott
P.S. Keep those ideas rolling in for a logo….I love them so far.
Saturday, February 1, 2003 11:21 AM CST
Yes, I realize that I didn't update the page yesterday. I was prepared to get 'testy' with everyone and write that if I don't get at least 5 guestbook entries, I feel neglected. (Of course, I'm the worst at keeping up with the other pages.) But, the truth is, I wanted to update in the afternoon, but the computer was being used. Then, I got home late from watching a basketball game and seeing a movie. So, there you go. No update yesterday.
Medical News:
Zachary is still tolerating his chemo well. His appetite is not what it should be, but I don't think we'll have a problem there. Today and tomorrow, we have to do the chemo in the hospital, because the doctor's office is closed on weekends. The good news is, we get to visit with some of our favorite nurses and staff that we haven't seen in awhile. Today's round went ok, we got back to the Quantum House by 12pm. Chemo was actually done earlier, but I was working with the doctor trying to get more details on some of the studies that we are considering. The people that write this stuff are great at listing drug information, disease requirements, doctor's names, participating hospitals, etc....what they DON'T do well, is answer the burning question that every parent has. HOW MANY KIDS HAVE USED YOUR DRUG, AND HOW WELL DID IT WORK? Now, call me crazy, (you won't be the first,) but isn't this an obvious question to have answers for? How am I supposed to evaluate the merits of a study, if I don't know how effective it has been. Maybe I'm supposed to go on the Crossing Over show with John Edwards and have him use his telepathic powers to determine the needed information. Or, maybe if I buy a Ouiji board, I could get the answers that way. Or, I could go get some tarot cards, and try to come up with some answers. Or, I could buy one of those magic 8-balls and ask the right questions. All very sound and logical plans for getting from A to B to C.
(My first meeting of SNA is coming up soon. Sarcastic Nutcases Annonymous.)
The song on Zman's page was done by Alabama. I meant to give that information the other day, and forgot. Sorry.
I need to put a new song on here.....I'm working on which one will fit my current mood......be prepared for the worst.
Cancer Sucks Club:
I agree that Joe's logo would be cool with some more color. I don't know how well it would work on a t-shirt if the colors were overpowering. I'll ask the t-shirt people. You have not seen Juliet's ideas, they are both great too. I'll post them all once I get a few more...hint
hint, hint. We will be going home tomorrow afternoon, so don't look for another entry until tomorrow evening/night.
Scott
P.S. The surpise about Zachary that I mentioned several weeks ago has changed. He still is going to be included with the person that I mentioned in the riddle, but on a different site. I know this sounds very cryptic, but I don't want to spill the beans until they finish with it. It may take another month or so, but when it happens, Zman will have some cool bragging rights.
Thursday, January 30, 2003 at 09:03 PM (CST)
WOW! Thank you to Juliet and Joe for your great ideas on the logo. The contest could end today, and I'd be ok with that. Juliet has submitted two great ideas and Joe's is in the guestbook for anyone to check out. Juliet, this ALMOST makes up for me having to go by the name, Goober Cootie-tush.....almost.
Zachary had a great day today. We finished with chemo around 10am (nice and early,) and then we rested for a bit at the Quantum House. After that, it was off to Connor Moran to see some other families and let the kids play. We left there with the Mathis's and spent the rest of the afternoon and evening with them. Zachary got to play with Mitchell and had a blast. It really helps to have great friends nearby while doing chemo!!!!!!!!!!!!!!
Medical News:
The following information is confusing.....at best. I had NYC fax down copies of Zman's scans for our local doctor to have in his file. While we were getting chemo today, I reviewed them with the doctor. One thing that jumped off of the page at me was the latest MIBG scan. (This is a scan that is used specifically for neuroblastoma. They use a radioactive dye that attaches itself to active cancer cells and lights up when scanned.) Anyways, NYC had told us that the scans were "unchanged." Meaning, they hadn't gotten better, and they hadn't gotten worse. The report I read today, mentions that there is slight elevation of uptake (activity) in certain areas of his bone. Well, this is very disturbing. Either the NYC doctor feels that this is statistically insignificant, or it is too early to make a judgement. Either way, we were never told. Our local doctor isn't too concerned, but he doesn't excite easily. He remains optimistic through almost anything. So, I've emailed NYC and asked for a clarification. Hopefully the waiting game won't last too long. Upon returning from NYC, I really felt we still had time to elvaluate the various protocols before making a decision. Now, I'm not so sure. Zman's one urine marker came back from NYC slightly improved, the other one isn't back yet. This would tend to make me think that things ARE stable. Urine markers have been a very useful tool with Zman......but you never know.
(For those of you in the cheap seats.....this all sucks pretty bad. Guessing and second guessing plans and decisions that will probably determine the survival of your child is kind of like a pleasant walk in the park....only there is no park, it isn't pleasant....and it blows!)
Ok, enough of that garbage....it's always me, me, me, me. Doesn't this Scott character ever have anything nice to say? Why am I talking about myself in the third person? This can't be good? How do I get Scott to stop? Great! As if he didn't have enough craziness going on in his head, now Scott is distancing himself from himself.
CSC:
The club is growing....people are hearing about us. Anyone interested in buttons or shirts can email us. When we get home....we'll get caught up with orders.
Scott
P.S. Zachary made me promise to remind everyone that his Yu Gi Oh wish list can be found on yesterday's journal entry. (I can't wait until he gets bored with this fad.)
Wednesday, January 29, 2003 at 07:21 PM (CST)
Well, here we are in West Palm Beach. Chemo started today with a new twist. Zman is now getting his chemo at the doctor's office! During the week, they will be able to give the chemo right there. It saves us lots of time and aggrevation with the hospital. I wonder if someone made some calls, I was pretty "short" with the Tenet folks earlier this week. Anyways, we'll see how it goes. It's nice to have the doctor right there though....and it's nice to get out early.
For those of you that have been to Boggy Creek, especially those of you that were there this past weekend. I am asking for your sympathy. My loving wife and son have firmly planted a song into my brain. I was driving innocently minding my own business on our way back to Quantum from dinner, and the two of them started singing the; "Ooly gooly gooly ooly gooly rump bump bump" song. Now, I know this is meaningless to most of you, but I am now tortured with this ridiculous song bouncing around in my head. Like I really needed anything else lost in that space. I love Boggy, but If I ever get my hands on the director for starting that song......
Zman has compiled his "wish" list for Yu Gi Oh cards. Please note that I used the word, "wish." Not the words, "run out and spend loads of money on stupid cards right now because the little boy on chemo asked for them." You DO see the difference there right? One is a wish, and one is a guilt trip....PLEASE don't confuse the two. Anyways, here are some of the cards his excellency has asked for:
Exodia The Forbidden One (with all five pieces.)
Red Eyes, Black Dragon
Blue Eyes, White Dragon
Magician of Black Chaos
Gate Guardian
Black Luster Soldier
That's enough for now....the retail value on Ebay of these cards combined is probably close to the GNP of some of the smaller countries out there. Whoever came up with these things is laughing all the way to the bank.
There have been a few comments in the guestbook regarding the State of the Union address last night. Some of you have even gone as far to suggest we should enter into political debates on here. Well, hmmmmmmmmm I've given this some thought. And, I've come to the conclusion that we are all currently "on the same team" here. All of us are focusing on one goal....despising cancer daily. I'm worried that if we add politics to the mix, we'll do nothing more than start confusing activity with accomplishment. I personally did not see the address. We were busy cursing a basketball team into losing. So, I say we leave the subject alone for now. I love a good debate, but the CSC needs my energy right now!
Speaking of the Cancer Sucks Club. Button orders are popping in from all over the country. They are a big hit. I've got ideas for future buttons and bumper stickers... and of course new t-shirts. I've also been thinking, (this is a dangerous thing,) we need a logo. Something to go on the pocket of the shirt with the words, Cancer Sucks Club. So, I am putting it to all of you. Draw something, doodle something....whatever. I will pick the best of the best and put it to a vote. I guess the easiest way to submit your ideas is to email a photo to me. If you don't have that capability, send it regular mail, and I'll photograph it and put it on the page once I make the final selections.
Medical News:
I'm knee deep in researching an alternative to the NYC treatment. I've made contact with the doctor and I am waiting for more information.
Scott
P.S. Email me some guesses on things we eat that were never living. It's a short list.
Tuesday, January 28, 2003 at 08:56 PM (CST)
Ok, ok, ok! Everyone has had their little laugh at Scott now, we can change the subject. It's all fun and games until some almost forty year old gets his feelings hurt. Well folks, we are down at the Quantum House again. Chemo is scheduled to start tomorrow, I'll be doing something
much more painful and scary, my taxes! Yep, the only thing I enjoy more than a day with the accountant, is a day with the dentist. Nothing like having your life force sucked out of your head. Hopefully Rebecca and Zman will be able to hold down the fort while I do my thing. I appreciate
all of the support and comments regarding our decision. As many of you know, these are the choices that we are constantly faced with.
I've heard from a few families that know about the study being done in Philadelphia, and I got the phone number of the doctor in charge. So, I should be able to gather some more information this week about what they are doing up there. As I learn more, you'll learn more.
Zachary and I were online last night looking up some of the Yu Gi Oh cards that he wants to find. On Ebay, a few were listed for around $249.99, not bad for a piece of cardboard with some nice colors and words on it. I'm starting to think that we've got a better chance of finding a H. Wagner baseball card than some of these Yu Gi Oh cards. Zachary loves the game, even though he changes the rules every time he plays. It's one of the nice things about being an only child......no other knowledgable kids around to argue.
Rebecca and I are too confused to know any better... although, I'm starting to catch on. I've noticed that when he plays certain cards, they are "all powerful," and when I play the same card, "they suck." Hmmmmmmm something is wrong with that picture. He only got me with that trick 17 times..... I catch on fast.
We went to another Palm Beach Atlantic basketball game tonight. I'm guessing that we'll be banned from attending sooner or later. We've been to about 5 games, and have never seen them win. They were winning tonight 20-4 in the first half, and started the second half with a 10 point lead. Then, the curse of the Finestone's kicked in, and they lost! There's another game Saturday night...we'll probably wear disguises. (Maybe that pink number from the photo.......NOT.)
Ok, well Zman is wanting me to tuck him in, so I will end this entry with a famous quote from that great American, Steve Martin:
"Always carry a litter bag in your car. If it gets full, you can just toss it out the window."
[THE OPINIONS EXPRESSED IN THIS JOURNAL ENTRY ARE NOT THOSE OF THE MGT. PLEASE DO NOT LITTER]
Scott
P.S. 14 days until the big 40!
Monday, January 27, 2003 at 09:25 PM (CST)
Soooooooooo, you've been waiting all day for an update? As Dr. Phil would say, "How's that working for you?"
Sorry it took so long, the doctor didn't call until 9pm, and between family and friends, I had some calls to make. I didn't want the FBI raiding my home while I was trying to sleep! NYC says, Zachary's disease is the same as it was the last time we were there, no better, no worse. We are still eligible for one of the studies that they have, but it hasn't started yet. To participate in this study, we would need to make Zachary very sick. The current chemo is doing a great job of keeping the cancer "at bay." But, it is not curing anything. Some children get many months on this schedule, maybe even a year or two. It is too new to make a guess as to how long Zman will keep getting a benefit from it. He has been on it for 6 months. So, back to the "making him sick" part. The NYC treatment will be rejected by Zman if his immune system is too strong. The current chemo we're doing doesn't knock him down enough. So, when and if we do decide to try this, we'll be knocking him down pretty hard (fevers again, neupogen shots again, possible infection....you know....the good stuff.)
Decisions, decisions.......this is why we're NOT the Cancer is Great Club. The good news, these decisions ONLY haunt you forever! Also, you get to second guess yourself for all of eternity too, so, there is that!
JUST ANOTHER DAY IN PARADISE.
1). Do we keep doing what we're doing, and risk losing ground quickly when the disease decides it's bored with this chemo?
or
2). Do we make him real sick now, and pray that A] The new study opens, and B] It works?
or
3). Do we find another drug or study, and start over from scratch, risking the fate of choice #1?
or
4). Do we............I've run out of "Do we's?"....I must be getting tired.
Somehow, somewhere, there has to be an answer. Or does there? Was there an answer for our friends that are still mourning their lost children? Is there an answer for all of our friends that are still in treatment hoping for success, but not knowing what the future holds? Is there an answer for our friends that have finished treatment, and now get to live with the fear of relapse? I know, I know.. I expect too much....too many answers.....well, maybe I'm just an "answers" kind of guy.
Cancer Sucks Club:
T-shirt orders have been rolling in....we're trying to keep up with demand, I'm having more printed as you sleep. I've already come up with the next T-shirt design. It's going to have the same front, "Cancer Sucks Club" on the pocket. And on the back it's going to read:
I hate cancer.........one day at a time!
(Sort of a play on the whole, "surviving cancer, one day at a time" theme.)
Give me your thoughts, not that I care, but even if I didn't ask, I know I'd hear from you!
Scott
P.S. If I sound frustrated or pissed off in this journal entry, it's only because I am!
P.S.S. I'm still working on the answer for the riddle Tom, "A word that ends with the letters "mt." I may have to check every word in the dictionary, but I'm sure I'll have the time when the put me into the padded room.
P.S.S.S. Ok, just because I'm in a bad mood, doesn't mean all of you don't deserve a good laugh, so, go to the photo album, photo #2. Yep, that sure looks like me in that alleged outfit. I could have avoided it, but Audra would have just posted it on her page, and then signed our guestbook and given you all directions on where to find it....so what's a nutcase to do?
Sunday, January 26, 2003 at 04:06 PM (CST)
Once again, we are home. This is turning out to be a traveling month for us. Chemo, NYC, Boggy Creek, and next week, chemo again! Before we go any further, there has NOT been any news from NYC on test results yet. Sorry. When I get them.....you'll get them.
Boggy Creek News:
Boggy Creek was once again.........amazing! I gave their web link in one of my recent journal entries, check out what this organization is all about. What they do for familes like ours is priceless! When I think back over the past three years of treatments, trips, holidays, parties, treats, etc.....I have a very difficult time remembering ANY time that can compare to the "Boggy" experience. Dorcas, Ed, Mike, and the entire staff and volunteers do an incredible job taking care of the families for the weekend, and making sure that we get to escape from our realities!
www.boggycreek.org is the link, CHECK THEM OUT! They are always in need of donations to keep the camp running and growing. They service many illnesses during the course of the year. If you are in a position to help them, please do so. They have helped us immensely! For those of you familiar with the Paul Newman charities, he is one of the founders of the Hole in the Wall Gang, that started these camps. So buying his products helps the cause too.
To all of the new families that we met this weekend.... We hope you had as much fun as we did. If you're reading this, you've obviously found the page! Email us with any questions about CaringBridge, or go right to their web page, www.caringbridge.org.
We were lucky to have some of our original Cancer Sucks Club families with us, the Schmidt's, the Schultheis' and the Mathis' (minus Bo.) All of these friends made the weekend that much better!
The t-shirts are still in the photo album for those of you that want to see what they look like.
Scott
P.S. The theme of the Boggy weekend was "clash." We were supposed to dress for the Saturday night dance in clothes that completely clashed. Because of how late we returned from NYC, I did not have a chance to put together an outfit. Luckily (or unluckily depending on your point of view,) Diane lent me a shirt to wear for the dance, and Zman lent me a bandana to wear. Now, I'm not going to confirm or deny any rumors, but the shirt MAY have been pink with a glitter star on the chest, and the bandana MAY have had little flowers, smiling faces and peace signs all surrounded in tie-dye. I'm not saying this actually happened, because our digital camera failed us the first morning, (battery died.) But, there were OTHER cameras there, Audra had one, and Diane had one, SO, there is the remote (I pray) possibility that one or more of these alleged photos might make it onto this or some other web page. SO, in conclusion, if one of these alleged photos, makes it to the web, PLEASE keep in mind that photos CAN be altered. AND, we already know that I may have been poisoned earlier in the week, so, my state of mind while dressing for this dance was not up to par. Also, if I was drugged once, who's to say that I wasn't somehow hypnotized or drugged into putting on a ridiculous outfit and dancing around like a lunatic? On a completely unrelated issue, anyone with photos from this weekend that wishes to profit from their destruction, please call me on my cell phone or email me at: IKNOWI'MSCREWED@HOTMAIL.COM.
Friday, January 24, 2003 at 07:51 AM (CST)
(The t-shirts are here....check out the 3rd photo in the album. I put one folded on top of another, so you could see the pocket that appears on the front, and the motto that appears on the back.)
[In Steve Martin voice from "The Jerk"] THE NEW UPDATE IS HERE, THE NEW UPDATE IS HERE! (You older fans will appreciate that one.)
Well, first of all, let me say......I do NOT have testing results yet. It is early on Friday, the doctor may call later today, but more than likely it will be Monday before I get the news. Having said that, you can now sit back and read this entry without skipping over my ramblings to look for juicy medical news.
Where to begin? Where to begin? Well, hmmmmmmmmmmmm why didn't Scott update the page on Wednesday or Thrusday? Good question. All complaints about a lack of updates are to be referred to the Ronald McDonald House in NYC. They chose to buff and clean the floors in the playroom and computer room on Wednesday and Thursday, so they were closed! Their phone number is 212-nicetry. Really though, we couldn't get to the puters.....sucks doesn't it? Well, maybe everything was going so smoothly that it didn't matter. Right? WRONG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Things got bad Tuesday night. Real bad. We all went out to dinner to a nice Chinese/Japanese place that is right around the block from the house. We had a great dinner, we all loved it. Afterwards, we went to the Jorgensen's room to watch tv and hang out. And then, around 9:15pm EST, on a cold winter day in NYC, in room 806 of the Ronald McDonald house, (I'm dragging this one out good....aren't I?) everything changed! I started to feel a little 'off'. So, I went down to our room to lay down and relax. About 15 minutes later, I was puking my guts out. Zachary and Rebecca got to the room about 15 minutes after that, and I was in bed shaking and feeling really sick. About that time, back in room 806, poor little Cam started projectile vomitting all over his bed. That was followed by explosive diarrhea. You'll have to check Cam's page, but I believe his vomitting lasted until about 12:30, but his diarrhea lasted well into Wednesday. I unfortunately, was up every hour until 5:30 vomitting. Along with the diarrhea of course. By 4:00am, I was pretty much crawling to the bathroom from a lack of energy. I did get about 40 minutes of horrible sleep in between each round, so that was good! By 5:00am, I was ready to go the hospital to get some phenergen (I had this many years ago for food poisoning, and it worked.) Lucky for me, my genius wife suggested Benedryl. It works for Zman, why not for me? So, I tried some and finally fell asleep by 5:45am. I was unable to join Rebecca and Zman for the final scan, I stayed in bed all day and was only able to eat 8 saltine crackers that night. Cam lost 7 ozs. and needed fluids and had to have some of his tests rescheduled for Thursday. No one else in our group got sick. Hmmmmmmmmmmmmm makes you kind of wonder doesn't it. Well, I know Cam's illness was accidental, but mine? I wonder. Why would anyone want to poison me? Being the super sleuth that I am, (yeah right) I played the evening back many times in my head. And then POOF, there it was. During dinner, we all got fortune cookies. Most were innocent enough, but Michelle's read, "You will meet an older more experienced man." AHA! Erik and/or Rebecca conspired to get me! Ok, that doesn't explain Cam's illness, but it sure makes for a dramatic ending...or, would you rather hear that Cam and I ate some bad pineapple chunks? You decide!
There were a few perks to this unexpected illness. I've never seen my lower intestines before, and I'm pretty sure that two or three times, they popped out for a few seconds. Also, I can now recreate the inside of the Ronald McDonald house toilet from memory. So, there is that!
Yesterday, I ate some dry cereal in the morning, 1/2 cup of noodle soup with some crackers for lunch, and 4 pretzels for dinner. I didn't get hungry until 12:45am on the way home from the airport....we went through McDonald's drive thru, I got a small milkshake. This morning, I did eat two whole poptarts, so my stomach is starting to ask for food again.
We are home for five more hours, so that is good. Then, it is off to Boggy Creek. What jetsetters we've become! Boggy Creek is a camp that invites families that have children with life threatening illnesses. During the summer, they have weeklong camps for kids only. Every week is a different illness. During the fall and winter, they have family weekends where everyone gets to go. If you want to check it out, go to www.boggycreek.org. It's an amazing place.
I do have some thank you's to mention. It was nice to wake up this morning and see all of the kind messages in the guestbook. We appreciate all of your thoughts! Also, the chemo angels have been amazing. They are constantly sending Zman packages and letters......they are really helping to keep his spirits up! Last but certainly not least, I would like to thank the Jorgensen's for being there for us this week. Many people had said to us that it was nice that WE would be there for them on their first trip to NYC, but I truly believe that it was a two way street. They were great people to travel with!
I know I've picked on Michelle about her Chariot's of Fire comment before, but I'm now convinced she does NOT have dislexia. I think it is a rare and seldom heard of illness called Cinlexia....where the person only gets mixed up or confused about movies. We were talking yesterday about actors, and she started combining first names of one actor, with last names of another, to create completely new people. We are all praying for a cure. Seriously though, the Jorgensen's had their hands full this week. With all of the diaper changes and running around, and naps, and eating habits, I just don't know how Erik and Cam manage her sometimes!
Scott
P.S. Congratulations to everyone that got the riddle. The answer was.....the letters are the first of each number from one to ten. One, Two, Three...etc. Counting them usually works for a clue.
Tuesday, January 21, 2003 at 03:14 PM (CST)
Sorry, sorry, sorry. I am truly sorry. I DID intend to update the page yesterday, however, they closed early because of internet problems. Normally they are open until 7pm, I came down at 5pm and they were locking the doors! Such is life. I know that many of you wait patiently for an update, and I felt really bad. I was able to talk with family by phone to give them news, and one of our friends in WPB got creative when there was no update. Diane, she just couldn't wait for news, so she called the FBI Hostage Rescue Team and had them helicopter in an assault team on the roof. They worked through the building in like 16 seconds, and while being held down, with machine guns pointed at me, I yelled an update into the cell phone that the FBI had hooked with Diane. She got her update. And, other than some handcuff marks on my wrists and an embarrassing incident with a full body search, all went well.
MEDICAL NEWS:
Well, NYC is not WPB. I realize that many of you already knew this, but I just thought I'd mention it in case. They really do have some of the top neuroblastoma doctors in the world here. The problem is, you have to get through "regular" rude New Yorkers to get to them. Some of these people are so used to being rude, it's just a way of life for them. Anyways, our visit with the doctor went well. He is still optimistic that Zman has improved enough to be eligible for one of the 3 (Yes, that is not a typo,) antibody studies. Evidentally, there are 2 different phase II studies, and the new phase I study. We are hoping for one of the 2 phase II studies, because they have been used for quite some time, on many many kids. We should start getting results by Friday, or Monday at the latest. If I get a call on Friday, you all won't get an update until Monday. We're going to Boggy Creek's cancer family weekend with some of our friends.
We finished with the CAT scans and bone marrow today. Tomorrow, all we have to do is the MIBG scan. Zman is holding up very well. We saw the doctor again today, and he explained what the plan would be IF we get onto the study we want. It will be a very difficult road ahead of us. I won't go into details yet, because we don't even have results yet. But, there could very well be more rounds of tougher chemo, fevers, shots, you know, all the fun stuff. I'll keep you posted as we learn more. For now, it's time to play.............
........THE WAITING GAME!
For those of you that are new to this game. I recommend that you get an hourglass timer and lay it on it's side, so the sand doesn't move. Or, take the battery out of your watch, or just unplug that electric clock on your nightstand. Now, sit down and get comfortable, and watch the time stand still as we play the waiting game. Waiting for results from tests is alot like a pleasant walk on a sandy beach on a cool summer day....only without the beach, the sun, the water or the good feeling, and IT SUCKS!
Yep, we're waiting for news that will definately affect our future plans. When and where we can travel, what drugs we'll be facing, how long we'll be facing them, all sorts of important issues that hang in the balance. Thats the joy of playing the WAITING GAME.
CSC:
I called the t-shirt shop, and they promised me that the first run of shirts will be done tomorrow, and I've already ordered 6 more LG and 6 more XL. So, there will be shirts available if you email me your orders. I will put a photo up on Friday before we leave for Boggy Creek.
Goober Cootie-tush (Scott....this name is getting old.)
P.S. The riddle from the other day is still:
OTTFFSSENT
If you are having problems, try counting the letters...over and over if necessary.
Sunday, January 19, 2003 at 11:44 AM (CST)
New York, New York.
Well, we all made it safely to the Big Apple. Our flight arrived 15 minutes early, and the kids did great! We had prearranged for a shuttle company to pick us up with a Suburban, to accomodate all 6 of us. The Suburban was taken, so they showed up with a stretch limo. We somehow found it in our hearts to take mercy on them and we suffered for the 30 minute ride in a limo. The tv, bar, music, and fancy lights were a bit of a distraction, but we managed. It is cold here. Very cold. Very, very, cold. Extremely cold. Beyond reason cold. Cold that gets you down to the bone. Did I mention it was cold? We're all bundled up. We did our little shopping excursion for groceries, and we ate lunch around the corner. We plan on taking the kids to Times Square for dinner and Toys R Us.
Tomorrow begins our adventure back at the hospital. Hopefully all will go well.
CSC:
The buttons are already a hit in NYC. Everyone that sees them, wants them. We left a bunch with the staff of Ronald McDonald House, and everyone is wearing them with pride.
We've only been gone from Florida for 6 hours, but we already miss our family and friends. I know it sounds corny, but all of you keep us sane. Luckily, we have the Jorgensen's with us to prevent any major mental breakdown's this week. We will update everyday with whatever adventures and results we get. I doubt we'll have much news on the medical front until Friday.
Goober Cootie-tush (aka Scott)
P.S. I have not received any correct guesses on the riddle yet. Hmmmmmmmmm where have all the brainiacs gone?
Here it is again. OTTFFSSENT What do these letters stand for? Do you need a clue? Just ask, I'll be glad to help out.
Friday, January 17, 2003 at 03:27 PM (CST)
I must be an eternal optimist. Somehow, I continue to allow myself to believe that things will work the way they’re supposed to. However, I find myself repeatedly getting aggravated by the very companies that are supposed to be helping us. Why do I empower these idiots to hurt us? Why do I let my guard down and give them the control they need to screw things up for us? I must be the most gullible person on the planet, because it happens again, and again, and again.
Tenet Health. This is the company that now owns St. Mary’s Hospital. This is the hospital where Zachary gets his chemotherapy. He has been getting treatments there for almost 3 years. (Way too long to be in this battle, but I DON’T like the alternative.) We are fortunate that St. Mary’s has a Pediatric Oncology Support Team. These wonderful people have been there for us time and time again over the past 3 years. They help with bills, they have been very giving during the holiday season, and they have always been there for us mentally, with advice and help. Now, I don’t fully understand Tenet’s relationship financially with the POST team, or how exactly they get paid. But they are working and functioning in that hospital, helping families. So, the question of the day is, if Tenet is smart enough to have a POST team there to help the families, and if Tenet is smart enough to know that families going through this, NEED the assistance and certainly DON’T need to be harassed by bill collectors, then WHY oh WHY do they refer the bills to their OWN subsidiary for collection? They have the financial counselors in place, HELPING us, ADVISING us on what and who to pay. So why do they refer the bills that the insurance company is dragging it’s feet on, to collectors? I asked that very question to the collector that answered the phone today. (I received two collection notices totaling $10,000.00 and change.) She informed me that Cigna is slow in paying, so they automatically send out letters to us, to get us to help THEM collect. I asked why they hadn’t billed the secondary insurance yet, they would surely pay the bill. Her reply was, “We don’t like to bother the secondary insurance company until we’ve finished completely with the primary.” So, I asked, “Oh, you don’t have a problem bothering and threatening me, but you don’t want to bother the secondary insurance?” She didn’t like the tone of that question, I think she actually blew a couple of veins in her head while I was asking it. I could hear the strangest popping sound. Anyways, the discussion ended politely enough with her telling me that she would try to have them stop sending letters, and me telling her to do unnatural acts to herself. All in all, I think it went well.
So, here we are. Friday afternoon, packing for NYC, Zman is excited to be going, Rebecca is getting clothes and medicines ready, and Scott is trying to lower his blood pressure from the triple digits.
Someday, I will look back on all of this and laugh, not because I’ll think it is funny, but because I’ll probably be in a straight jacket, staring out of a window while drooling and being heavily medicated, and I simply won’t know any better than to laugh. Such is life.
MEDICAL NEWS:
Zman is still feeling pretty good. He has coughed a few times in the past two days, but nothing serious. I think his body is getting used to not having all of those medicines poured into him everyday. He looks good, and feels good. These are both good things!
CANCER SUCKS CLUB:
I was hoping to have photos up of the t-shirts. But, they are not finished yet. Evidently, the shop that is printing them had to order the blank shirts from Illinois, and they won’t arrive until late today, so you’ll all have to wait until we return from NYC. Buttons are still hot, and I’ve got plenty.
Goober Cootie-tush (Thank Juliet for making me use this name.)
P.S. OTTFFSSENT <---What do those letters stand for? (Not the P.S. of course, just the others….email me your guesses.)
Thursday, January 16, 2003 at 07:55 AM (CST)
There is a very old story that many of you have probably heard before, but, seeing as this is MY page, I'll make you sit through it again.
Once upon a time there was a man that lived his whole life in a small house by a river in a nice small city. During the summer, when it would rain, the river would threaten to flood, but never during his life had it risen to damage the homes. One summer, the rains came harder than they normally do, and the river began to rise. The Mayor consulted with the weather experts, and it was decided that they would evacuate the residents near the river, to avoid any danger. The police sent patrol cars to make sure that everyone had left, and much to their surprise, they found the old man stubbornly still at home. They asked him to leave with them, but he simply said, "God will look out for my, I have faith." So, they went on to check the other homes. Several hours later, when the water had risen and was about 3' high on the homes, the police dept. sent a boat down the man's street, to try and get him to leave. Once again, the old man said, "God will surely look out for me, I have faith that he will protect me." So, once again the police went on their way to check the other homes. More time passed, and the water now only left a small part of the roof above water. The man was sitting up there when a police helicopter came and hovered overhead. The police yelled down, "You have to come now, you will surely drown if you don't leave with us now." But, the man shook his head and yelled back, "I have told you, I have faith. God will look out for me, he will not abandon me." So, once again the police left. The rain got harder, and eventually, the water swept him away and sadly, he died. When the man made it to heaven, he was confused. He approached God and asked, "I have always had faith in you, why did you not look out for me and take care of me?" God looked down at the man and said, "But I did! I sent you a a patrol car, a boat, and a helicopter!"
Now, many of you are probably wondering why I would put this story here on the page today. Well, I guess I was just thinking about how frustrating this illness is to so many of us, and how we are ALL looking for answers to the many problems that we are now faced with. I think the answers are sometimes not as obvious as we would all like them to be, but I do still believe that they are out there, for us to find. The key to that last line was, "They are out there." We all need to keep fighting and searching for answers. For me, this page, and the Cancer Sucks Club have provided an excellent distraction for me. A temporary purpose outside of the obvious one that keeps us traveling to medical facilities too often.
No new medical news.....all is well.
CSC:
T-shirts should be ready today or tomorrow.
I would like to send out a special thank you to Ryon, for taking the time to post that last message in our guestbook. It was nice to have the oldest current member of the Pediatric Cancer Sucks Club Chapter give us an "insiders" view of how our actions as parents can affect the children. I would also like to assure Ryon, that Zman NEVER reads the journal entries. We read the guestbook entries to him at night, so he can see all of the wonderful people that care and pray for him on a daily basis. I would never subject him to the lunacy of my journal entries. And, when I get really frustrated with insurance, or the disease, or work, I ALWAYS wait until he is sound asleep, before I throw the computer or tv set through a window. And, I always have the repairs done before he wakes up, so he won't know what happened.
Scott
P.S. Once again I spend all that time writing an insightful journal entry, and you are looking down here for more. It isn't enough that I give you life lessons and comedy, you want more, more, more, more.
Tuesday, January 14, 2003 at 09:44 PM (CST)
Ok folks, it's late, I'm tired, and I have to get up early for work tomorrow...so bear with me.
You know those movies, where everything seems to be going ok, then WHAM...something jumps out, or bombs start going off.....you get the idea. WELL, let me tell you about the phone call I got today. First let me say, that I really believed that I had the whole insurance thing under control. I sorted out the policy differences, sent them a whopping check for the conversion policy, and have just been waiting for the confirmation that we will be on the new policy soon. Well, there is a company that "sells" the policies to the company that Rebecca used to work for. They negotiate with the insurance companies and work with the employers. These folks have helped us many times over the past 3 years (has it really been that long...we should get a button or something for time served....oh yeah...we did,) anyways, these people know their stuff. Well, I had called them when this whole conversion thing had blown up in my face. They were looking into things when I got my answers the hard way, so I hadn't talked with them since it was resolved. Well, the owner of that company called today and asked if Zman was disabled, in the eyes of SSI. I said yes, based on his hearing, he is labled disabled. Well, she said, HEY, you're eligible for an extension of 11 months of COBRA! I said, HEY, I asked that very question to Rebecca's old employer when I was trying to get information about the conversion policy, and they had said, NO, NO, NO....you are NOT eligible for an extension.
So, my next question was, "The conversion policy is cheaper, shouldn't I be happy to get onto it, and off of COBRA?" She replied, "NO! The new policy doesn't come close to the coverage of COBRA!!!!!!!!!!!!!!!! You need to stay on COBRA as long as possible to use the benefits."
Ok, now I'm pissed. This is just bull$hit. How much of this crap are they going to throw at us. They absolutely don't want us around, and they will do anything to move us along. I think I just broke a personal record with my blood pressure while typing this story. This can't be good for my health.
I'm going to deliver my next insurance payment to them in pennies. I'll get a wheel barrel from Home Depot and roll it in and dump the load in their lap!
Scott
P.S. There is no P.S. today, I'm too pissed about the insurance thing...quit reading this sentence and move along.
Monday, January 13, 2003 at 06:53 PM (CST)
I would like to say a quick word about this particular song. I heard it for the first time about 5 or 6 weeks ago.
When I heard it, there were several thoughts that passed through my mind. I immediately thought of several children, Zachary, Cameron, Mitchell, Robert, Seth, Ty-Michael, Ryon, Kyle, Jessica, & Amanda to name a few. Some of these children have left this world for a better place, but all of these special children have brought so much to the lives of those they have touched. They have taught us lessons about life and courage that will stay with us forever. So, when you read this page and hear this song, think of all of the little soldiers that have been thrown into this battle....in my eyes, they are all angels among us.
MEDICAL NEWS:
Well, first of all, Zman has had a headache today. This is something new. It has come and gone several times. There is no sign of a fever thankfully, and we are treating this with Tylenol....hopefully it is just a sinus thing. Onto the good news>>>>>>>>>> We had our annual asthma/allergy doctor appointment for Zman today. They do various breathing tests and check out his lungs. Last year, they said his lung capacity had improved to the point where he almost didn't need his three daily meds for that condition. Today, his tests were so good that they have cleared us to stop ALL THREE meds. No more inhaler, no more nasonex squirts into the nose, and no more Clariton tablets (you may remember they cause elevated levels in the urine.) Zman was very happy about this. Onto the reaaaaalllllllllly good news>>>>>>>>>>>>>>> Our oncologist called today with the current urine results. Last month, the VMA was 14.5, now it is down to 12.3! (Normal is 0-9, but I like the trend.) The HVA last month was 28.4, this month it is down to 26.2! (Normal is 0-15, but again, I like the trend.)
This urine indicator can drive you nuts. If you need further proof of this, read some of my old journal entries....I've been told I'm no longer the shiniest coin in the fountain.....(If I was smarter, I'd understand that insult enough to be offended.) Anyways, it's great to have improvement with these counts. It means we've bought time. How much, I don't know....but time is time....and I'll take it!!!!!!!!!!!!!!!!!!!!!!!!!!
RESPONSES TO GUESTBOOK:
1). To Matt - You asked for proof that I'm a "true" Pittsburgher.......hmmmmmmmmm. Did you ever swim in the crick? Have you ever eaten a Pirmanti Bros. steak burger with fried egg, french fries & cole slaw....all on the sandwich, have you ever gone down to Oakland to the "O", for fries and hotdogs that are out of this world? A true Pittsburgher will know all of these things and will recognize a fellow "burgher."
2). To Genna - Yes, we attended Kyle's benefit on Saturday with Diane Mathis, her friend Carrie, and the kids. And yes, I did somehow allow Rebecca, Diane and Genna talk me into racing Genna up the rock wall. And yes, I'm a fairly athletic 39 year old fit man, competing against a 14yr. old girl that is recovering from major surgery on her shoulder from cancer and from a lengthy chemotherapy protocol. And yes, she did kick my ass all over that wall. BUT, in my defense, the sun was in my eyes, the snow and sleet made MY side of the wall slippery, (Yes, it was in Florida and it was 70 degrees, but it was some kinda freak storm or something,) I think also, a tornado touched down on my head and kept me from using my lightning reflexes to vault myself up the wall in a world record time. All of these forces of nature were working against me. The only saving grace for me was, I did ring the bell that resides at the top of the wall. (This of course would NEVER have happened, if I didn't have freakishly long gorilla arms. I was about 8' away from the top, and dislocated my shoulder so I could reach a few inches higher and ring the bell.)
Ok, maaaaaaaaaaaaaybe she beat me fair and square. But I'll never tell her that.
3). To the crying crowd - I get teary eyed EVERY TIME I HEAR THIS SONG....why shouldn't all of you have to suffer the same fate! I purchased stock in Kleenex right after Zman got diagnosed, I'll retire before I'm 45.....my crying alone will use enough tissues to put a kid through college. I cry during the sappy commercials that come on frequently.......I'm a whimp. A sentimental whimp. Get over it.
Cancer Sucks Club:
Well, the t-shirts have been ordered. I only got a dozen for the first run....(I'm not made of money folks.) They will cost you $12.00 ea. regardless of size, plus shipping. The first run, I got 4 XL, 4 LG, and 4 SM. (The small will probably fit a child Zman's size, 63lbs.) They should be ready by the end of the week. I will put up photos and then you can email me if you want them. If I get enough orders, I will get more printed...the turn-around is quick, like 3 or 4 days....so don't fret. Please don't order any until the photos are up.
Scott
The riddle is on yesterday's page.....check it out if you're into riddles. A new one will be posted soon.
Sunday, January 12, 2003 at 04:57 PM (CST)
THE NEW MUSIC IS HERE...THANKS TO JOE ROMMEL! (We should now have enough bandwidth to allow for many hits on this page each day with music.)
I would like to say a quick word about this particular song. I heard it for the first time about 5 or 6 weeks ago.
When I heard it, there were several thoughts that passed through my mind. I immediately thought of several children, Zachary, Cameron, Mitchell, Robert, Seth, Ty-Michael, Ryon, Kyle, Jessica, & Amanda to name a few. Some of these children have left this world for a better place, but all of these special children have brought so much to the lives of those they have touched. They have taught us lessons about life and courage that will stay with us forever. So, when you read this page and hear this song, think of all of the little soldiers that have been thrown into this battle....in my eyes, they are all angels among us.
Yes, we are home! Zman finished up his chemo this morning like a champ. Michelle was our nurse, and she got us out of there by 12:30! A new record. Once we got checked out of Quantum House, Zman fell asleep and Rebecca got us home safe and sound. I of course took a short power nap to recharge my mental batteries so I could be fresh and witty for the journal entry. (Maybe I should have slept some more.)
It IS good to be home though. Not too many bills waiting for us, and only a couple of phone messages that had to be dealt with. So, all in all......better to be home than at the hospital. Anyone out there watch the football games yesterday?.......I think we should observe a moment of silence for my Steelers.....I read about the bad call at the end of the game. (silence) (more silence) (more silence again) Ok....get over it. It's just a football game. Now, the Finestone clan is rooting for Tampa. Our friends Tim and Audra are huge Tampa fans, and, the hockey team over there has been great to us. So, for the next 3 weeks, it's GO TAMPA!!!!!!!!
I've only received one guess on the newest riddle. Whats wrong out there in internet land? Did I make it too difficult? I'll give you a few more days on it and then we'll move on to a new one. I've reposted yesterday's riddle on the bottom of this entry....just to remind everyone.
We went with our friends the Mathis's last night to the sneak preview of Kangaroo Jack. It was a very funny movie. Adults and kids alike will enjoy this one. Take the family.
CSC:
I'm going to try and get some t-shirts started this week. They will have "Cancer Sucks Club" on the pocket, and on the back they will have the club motto. If they're done before we leave for NYC, I'll take a picture and post it in the album. Otherwise, it will have to wait until we return.
Scott
P.S. Nothing to see here....move along....move along.
New riddle: Words that end in 'gry', like 'hungry' and 'angry'....give me another one.
Saturday, January 11, 2003 at 07:15 AM (CST)
Oooooohhhhhhhhhhhh boy did I open a can of worms! All I wanted to do was give you guys a little fun with a riddle, and now everyone is disecting what I write trying to find some super secret double probation hidden clue. I know, once again it is my fault! I've got that "challenging" personality that makes folks think I'm trying to be clever. Well news flash everyone....Scott is alot like Homer Simpson, only without the yellow coloring and the beer belly! Sorry to let you all down. Anyways, the riddle was NOT meant to be a trick on words with feet and paws, it was a simply a math riddle that had the added effect of trying to remember to add in the two feet of the man. But, I'll try to make it up to you with an easier one today, we'll just forget the cat riddle and pretend it never happened. For those of you that can't let it go, the answer will be attainable from this journal entry...with a little bit of work.
Medical News:
Zman did well again yesterday. He tolerated the chemo great. Michelle and Cam were nice enough to bring up Taco Bell for us, so Zman was VERY happy. He got one of his favorite foods, AND he got to play with Cam! (I am a little suspicious of Michelle's motives, I WAS going to let the whole Chariots of Fire thing die down, but I can't help but wonder if she was somehow trying to bribe a prestigious member of the Cancer Sucks Club with FOOD, to get herself out of the limelight. I of course don't eat that unhealthy junk food, my body is a temple! I went down to the cafeteria and got one of their grilled angus burgers with a huge side order of french fries. Nothing but healthy foods for the Scott machine.)
Cancer Sucks Club:
Orders are still rolling in for buttons, however, we are still down at the hospital, so please be patient. We will be home late tomorrow and we will sort through the emails to see what everyone needs. It's pretty cool to walk around the oncology floor and see many staff members wearing them.
Scott
P.S. To get the answer to yesterday's riddle. Count the total number of letters used in this journal entry, divide that number by pi, then, multiply that number by Zman's age. Then take the square root of that number and then triple the remainder. Have fun!
P.S.S. New riddle: Words that end in 'gry', like 'hungry' and 'angry'....give me another one.
P.S.S.S. Anyone that actually tries that ridiculous series of instructions from the "P.S." paragraph is permanently kicked out of the Cancer Sucks Club!
P.S.S.S.S. 8 days until NYC.
P.S.S.S.S.S. The answer was 506.
Friday, January 10, 2003 at 07:37 AM (CST)
I know, I know, I know, I know.....I didn't update the page yesterday. I'm sorry. Basically, this computer at Quantum is beyond slow. They are working on getting some new ones, but it takes time & money. If there is some Joe Millionaire out there in Caringbridge land that is sitting stacking $100.00 dollar bills into piles of 50, so he/she could then put those stacks into piles of 100, (well, you get the idea) take a stack or two and run down here to the Quantum House and drop them into Richard's lap. He'll know what to do with them.
Medically speaking, Zman is definately my hero. I know I should mention that more often. I probably take it for granted sometimes how well he tolerates the crap we pump into his body. When he was getting accessed the other day, the nurse was having some difficulty. Zman has had scar tissue right on top of the spot where the needle goes into his port. (Upper left chest.) So, they have to pull the skin up a little bit to get the scar tissue out of the way. Well, the skin was moving great, but the scar tissue sat right there. So, everytime (5 or 6) the nurse tried to push the needle in, the scar tissue 'bumped' the needle away, and the port rolled. One of the other nurses that has accessed him several times had to come and help. She got it on the first try. The whole point to this story is, Zman layed there and DID NOT BUDGE! I was very proud of that. After chemo yesterday, we rested for a bit at the Quantum House, I got my daily dose of Dr. Phil. (Any comments here about my masculinity will be dealt with quickly, & severely.) And after that, we went to the Mathis's to play some board games and go out for dinner. Zman held up great. He and Mitchell played their Beyblades and kept busy.
So, here we are getting ready to head up to the hospital for another round. I felt bad about not updating yesterday, so you get your daily dose of Scott early today. Thank you to everyone that has been posting in the guestbook. We love the entries. If we don't respond to every one of them, it's only because this computer is slow. We definately get a chuckle and smile out of many of the comments. For the racing team, Zman says, "Get the fast new motor and leave them ALL in your dust!" For Chirsti that asked about the Chariots of Fire comment, well, I think we have picked on Michelle enough this week, so telling everyone in the free world that she thought Rob Lowe was in THAT movie (she was thinking of St. Elmo's Fire) would be cruel, and I'm just not that kind of a guy.
CSC:
We gave buttons to the oncology floor, and many of the parents are seeing them, grabbing them, and wearing them. It's like a virus, spreading fast. I better get those t-shirts made next week. I already have the design made. I'll put a photo up as soon as I've got them.
Scott
P.S. I'm glad to see that there are many riddle fans out there like me. You all did great with the alphabet one. For those of you that got stumped. The answer appears below, so if you don't want to know yet, don't scroll down.
And, below that is the new riddle....enjoy.
Answer: Letters with all straight lines go on the top row, letters with some curves go on the bottom row.
New riddle: If a man has six bags, and each bag has six cats, and each cat has six kittens.....how many feet are there all together? Calculators ARE allowed.
Wednesday, January 08, 2003 at 01:51 PM (CST)
Sorry I haven't updated the page in a couple of days.... no news is good news!
Zachary has been feeling pretty good lately. He went about 5 days with no stomach, back or ankle pain. Then, two days ago, he had lower back pain again. We gave him some Tylenol and that seemed to take care of it. Last night we got settled into the Quantum House, then we went and had dinner with our friends; Erik, Michelle, Cam, Bo, Diane, Mitchell & Kaleigh. We then spent the night playing board games. It was very nice to get together and relax with our friends. (I promised I wouldn't mention the Chariots of Fire incident, so I won't.) Today, we had Zman's counts checked at 8am, and guess what? His ANC was a whopping 1125! That is almost double what it has been lately when we start chemo. Maybe his bone marrow is kicking in and doing it's thing! The doctor gave him a very thorough exam to see if he could replicate the back pain, and thankfully, he could not. Zman stays pretty active while we're home, so it was probably from all of the running.
CANCER SUCKS CLUB:
Well, we delivered our first batch of buttons to the oncology office and floor. They were a big hit. Some of the nurses are wearing them, and the doctor even took one. We may have started something here......time will tell.
11 more days until we leave for NYC...the clock is ticking.
Scott
P.S. Once again, I want to make it perfectly clear that I DID NOT mention the Chariots of Fire comment by Michelle. She would be very upset with me if I embarrassed her in public by telling THAT story!
Sunday, January 05, 2003 at 07:35 PM (CST)
Here we are.......another weekend ending. Zachary has felt great all weekend, so that is of course GREAT news! He got to meet with about 45 kids at Books A Million for a Yu Gi Oh meeting. They trade cards, buy cards & play the game. The parents sit around with a "deer caught in the headlights" expression, while the kids are yelling and screaming about magic cards, trap cards & monster cards. It's all very exciting....if you're 8 yrs. old. My folks came down for the day, so that was fun. We got to visit and have a nice dinner with them.
Today, I had to do inventory at work, so Zman and Rebecca went to church and prayed for me.....(I'm guessing on that one.) I did get to see the end of the Steeler's/Browns game. WOW, what a comeback. I grew up in Pittsburgh during the super bowl years...(four wins in five or six years,) so I still root for them. Other than that, it has been a nice quiet weekend.
We leave for WPB and more chemo on Tuesday. Treatments start Wednesday and run thru Sunday. Hopefully they will go better than last time. After that, it's a week off, then the following Sunday, it's off to NYC. Now, I need to go off on a tangent here. There are two people who are looking for trouble from me. Zman & Michelle (Cam's mom).
Here I am the other day, sitting in my room, reading updates to keep informed about all of the families that we follow, and what do I see on Cam's page? Michelle writing about how she hopes there is snow in NYC for our trip. (We are traveling with Erik, Michelle & Cam to the same doctor.) NOW, if THAT wasn't enought to ruffle my feathers, Zman is talking everyday now about how HE wants there to be snow in NYC. Maybe I'm the only one that reads the paper and watches the news, but haven't they gotten about 5 feet of snow up there in NY in the past week and a half? Do we really need MORE? These two better lay off of the snow prayers, or I'll be buying them one way tickets to Alaska! They can make snow men and roll around in it ALL DAY LONG! If there isn't a mountain some skis and a chair lift, I DON'T WANT TO DEAL WITH IT! Enough of that. LOL
Ok, maybe I overreacted....a little bit of the white stuff wouldn't be the end of the world......Zman hasn't seen any in two years, and Cam has never seen any. BUT 5 FEET ...COME ON!
Cancer Sucks Club:
Orders have been rolling in on email for buttons. A bunch will be going out tomorrow. If you live in WPB and know us, we will be bringing about 200 or 300 down with us to Quantum.....so make plans to see us! If you don't live in Florida, quit you're crying....we didn't pick your homesite......move if you don't like the cold!
Scott
P.S. I've been thinking about another riddle. I still can't reveal the secret yet, but I do love riddles, so here is another one....some of you may have seen this one before.
Basically, you need to finish the alphabet...some letters go on the top line, and some on the bottom....I've given you the beginning....email me the entire alphabet...top and bottom rows complete.
A EF HI KL
BCD G J
Good luck!
Friday, January 03, 2003 at 09:02 PM (CST)
1). The good news: I have music back on the page! Enjoy the song, I will be changing it every once in awhile. When I hear this song, I picture Zman looking up to the sky screaming some of the lyrics......"what about me?....it isn't fair...."
2). The bad news: Well, unfortunately our current web host for the music will only allow 100mb of transfer per day. This means that each time someone checks the page, approx. 5mb. will be transfered to allow the song to play. SO, only the first 20 or so people to hit the page on any given day, will hear the song. Sorry. First come, first served.
3). The better news: I have found a web page to host the music for this page, and it will allow 12gb of data transfer. That translates into about 2400 hits per month. So, in a few days, everyone will be tortured with my taste in music. Get over it.
MEDICAL NEWS:
Zman has been feeling well today. This is a good thing. DUH!
CANCER SUCKS CLUB:
Congratulations to everyone who has solved the riddle. I am very pleased to see that so many people took the time to dive head first into my crazy world. This may prompt me to add some more riddles in the future. (I can hear the heavy sighs as I write that...)
The button orders have been coming in. We are working on getting them out...be patient...they're coming.
Scott
P.S. I am sorry to say that I still cannot announce the secret yet. If you have not solved the riddle and are being tortured by the curiosity of it all, well, then I suppose I have completed one of my missions in life!
I will post the information as soon as possible.
Thursday, January 02, 2003 at 06:15 PM (CST)
Hello, hello.
Well, here we are approaching another weekend, and hopefully some more relaxing days before the next round of chemo starts. (Wed.) The battle with Cigna is on hold. I mailed the application and check to apply for the conversion policy, so now we hurry up and wait for no more than three weeks. That is how long they claim it will take to process the paperwork and mail us insurance cards. Time will tell!
CANCER SUCKS BUTTONS: Well, Rebecca and I have thought long and hard about this. We definately want to make them affordable for all of our friends out there in the Caringbridge world, AND, we definately want to become millionaires on this project. Decisions, decisions. Ok, we have decided to sell the buttons to our friends online for $1.00 ea. (plus shipping). If you are buying them for an 'event', and you order 50 or more, we'll cut the price to $.75 ea. (plus shipping.) I hope these prices don't offend anyone, we're trying to get creative when it comes to paying bills. If you are reading this page and have lost a child to this horrible disease, you are NOT allowed to pay for buttons. Please email me or call me and we will provide as many as you want/need! You have already paid WAY too high of a price in this battle. (Ruthie, I have already taken care of Jeff & Kathy with buttons, so don't argue with me on this, just tell me how many, and where to send them!)
Ok, the riddle has generated alot of interest, but NO guesses. So here is the riddle again, only this time I was nice enough to include the spacing between the words. Now, for those of you that look at this updated version and have cocked your heads to one side like a puppy hearing a strange noise, you need to look at the words that appear more than once. From that, you can probably figure out what one or two words are, and then use those letters to partially decode others.......and then work from there. Good luck, and remember, NO GUESSES ON THIS PAGE! EMAIL ONLY.
Scott
Keh jxmmth xn kebk dbjxc yhdxhzi ebn nhyhokhm keh veckc cq udbs bsm dbjxc kc bvvhbj cs keh qjcsk vbwh cq keh ghavbwh qcj keh dbjxc yhgxhzi qczsmbkxcs.
Thursday, January 02, 2003 at 06:15 PM (CST)
Hello, hello.
Well, here we are approaching another weekend, and hopefully some more relaxing days before the next round of chemo starts. (Wed.) The battle with Cigna is on hold. I mailed the application and check to apply for the conversion policy, so now we hurry up and wait for no more than three weeks. That is how long they claim it will take to process the paperwork and mail us insurance cards. Time will tell!
CANCER SUCKS BUTTONS: Well, Rebecca and I have thought long and hard about this. We definately want to make them affordable for all of our friends out there in the Caringbridge world, AND, we definately want to become millionaires on this project. Decisions, decisions. Ok, we have decided to sell the buttons to our friends online for $1.00 ea. (plus shipping). If you are buying them for an 'event', and you order 50 or more, we'll cut the price to $.75 ea. (plus shipping.) I hope these prices don't offend anyone, we're trying to get creative when it comes to paying bills. If you are reading this page and have lost a child to this horrible disease, you are NOT allowed to pay for buttons. Please email me or call me and we will provide as many as you want/need! You have already paid WAY too high of a price in this battle. (Ruthie, I have already taken care of Jeff & Kathy with buttons, so don't argue with me on this, just tell me how many, and where to send them!)
Ok, the riddle has generated alot of interest, but NO guesses. So here is the riddle again, only this time I was nice enough to include the spacing between the words. Now, for those of you that look at this updated version and have cocked your heads to one side like a puppy hearing a strange noise, you need to look at the words that appear more than once. From that, you can probably figure out what one or two words are, and then use those letters to partially decode others.......and then work from there. Good luck, and remember, NO GUESSES ON THIS PAGE! EMAIL ONLY.
Scott
Keh jxmmth xn kebk dbjxc yhdxhzi ebn nhyhokhm keh veckc cq udbs bsm dbjxc kc bvvhbj cs keh qjcsk vbwh cq keh ghavbwh qcj keh dbjxc yhgxhzi qczsmbkxcs.
Wednesday, January 01, 2003 at 05:16 PM (CST)
HAPPY NEW YEAR!!!!!!!!!!!!!!!!!
Hopefully it will be a healthy and happy year for everyone.
(I am still working on the music thing. BellSouth only allows 100mb of transfers each day from our personal pages, that's about 20 hits! So, we are working on finding another source for hosting the music.)
Yesterday turned out to be fun. We were invited by our friends Ben, Jeff & Kathy to join them for a movie and dinner. Zman got to spend the evening with their children and Kathy's mom, so he had a blast. We saw "Catch Me If You Can." It was a really good movie, we liked it alot. Afterwards, Ben took us all to Morton's Steakhouse for a wonderful dinner. It was a very relaxing/enjoyable evening. Today, we lounged around at Jeff & Kathy's house, watched some football, let the kids play some more, and took it easy. We are very, very fortunate to have great friends like this that include us in their lives.
MEDICAL NEWS:
Zachary was very active over the past two days, lots of jumping on the trampouline. He seems fine so far, no ankle pain, so we'll see. We had his counts checked yesterday and his platelets and hemoglobin were great. His ANC (ability to fight infection) was a little low, 700, but that's about how it has been running after chemo.
CANCER SUCKS CLUB:
The buttons are here! Go to the photo album to see them, picture #3. I only got 1,000 on this first order, so get em while they're hot!!!!!!!!!!!!!!!!!!
Scott
P.S. When I get some time, I'll put the spaces into the riddle so it looks more like words, and then I'll repost it here....maybe that will help.
Monday, December 30, 2002 at 12:49 PM (CST)
(I am working at restoring the music for this page....It will hopefully be back up with a new song in the next day or two.
Today is Monday, and the battle rages on. I have been wounded during this battle, my energy level is down and my spirits have been drained. I wish I could write here that I have been energized by all of the positive messages that I receive, but the truth is, these A-holes are wearing me down. Today, I called them again, to try and learn what the differences are between the 3 policies that they sent for us to choose from. I’ve pretty much eliminated 1 of the policies, so it SHOULD have been easy for them. Unfortunately, of the 2 remaining policies, only 1 came with an explanation of coverage. They both had a section on exclusions, but how can you compare them if you don’t have all of the information? The non-helpful, uncaring, uninformed parasite that answered the phone, told me, “The packets are complete as you received them. We get many calls asking where the coverage explanation for the one policy is, and we do not include it in that packet. IF you select that policy, we will THEN send you the information about what is covered.”
Ok now, take a deep breath and reread that last part so you can fully understand the magnitude of their ignorance. Not only are they AWARE of the omission of coverage information, they EXPECT you to make your decision based on incomplete knowledge, and then receive your coverage information AFTER you’ve already committed to a policy!!!!!! Lets see if I can come up with an analogy for this situation….hmmmmmmm.
Ok, try this out for size. “You must choose one of these two doors to walk through. I will tell you that the first door will lead you to a path that MAY work for you, and the second door, well, it may ALSO lead you to that path, but along the way, you MAY get a bucket of crap thrown in your face…..we’re not going to tell you if that will happen UNTIL you are in need of a towel and disinfectant! Ok, which door do you choose?”
Maybe that wasn’t the best analogy, but I think you get the point. Anyways, I started working my way up the ladder, and of course…the supervisor that I needed was not in today. So, I jumped past that person and asked for the next idiot up the rung, and of course THAT person wasn’t in today. I finally got a woman in customer service, (if that’s not a contradiction in terms for these folks, I don’t know what is,) and she made a few calls and finally got me some answers. Apparently, the coverage is the same for BOTH policies, so they just send it with one of them, without letting you know that they are the same. Maybe there is some new technology that is supposed to convey that knowledge through some sort of ‘contact osmosis’ where you touch the paper, and POOF, you know the answers. Maybe there was too much oil on my hands, and it didn’t work…..it MUST have been my fault. Clearly, they have done everything they can to make this easy on our family. (Can you FEEL the sarcasm?)
This customer service woman was actually nice AND helpful, I will give her credit for that. I saved her name and number, and she informed me that if I have problems, even if they are out of her area, she will make the calls and try to resolve them. She is in charge of ALL COBRA customer service people. Oh, I did sort of mention that Zman has a prestigious fan club, (Senators, Governor, VP, President….you know, the usual.) I don’t know if that swayed her decision to help or not, but who cares….she helped!
So, now I am preparing to send off the form with our money, (yes, I will send it certified, something the mail and I will have in common,) so, hopefully this will end another chapter in the ongoing saga of Scott vs Cigna!
MEDICAL NEWS:
Zman seems to be ok today, so that is of course a very good thing.
Scott
P.S. I read your guest book entries regarding the Palm Beach Post photos, when you get to the web page and select ‘2002 photos.’ The photographer is Damon Higgins. I believe the photo is #3. Sorry I didn’t have that earlier, I hadn’t looked on the web page, we only had seen it in the actual paper.
P.S.S. The riddle is on yesterday’s journal entry….I’m too lazy to retype it, so go look there if you are so inclined.
Sunday, December 29, 2002 at 08:10 PM (CST)
Our little media star has again made the local paper. The Palm Beach Post, the paper that ran the Season to Share story that I talked about several weeks ago, has selected it's "Best photos of 2002." Each photographer for the paper gets to select their favorite photo from the year. The photographer that took the Season to Share photo of Zman, selected that photo for his pick! If you go to:
www.palmbeachpost.com and look for the 2002 best photos, it should be in there. It's the same photo that is shown above, only there is a quote from the photographer about why he chose that picture.
Tomorrow, the battle rages on! I will be making calls to the insurance company to try and resolve this conversion issue once and for all! The clock is ticking, I know they will do anything to delay as long as possible. Hopefully, it will be done by tomorrow or Tuesday. We'll see.
MEDICAL NEWS:
Well, today was another adventure with Zman. We went to my folks place in Vero Beach to visit for the afternoon, and Zachary had another "attack" of pain in his back/chest & side. We gave him some tylenol and antacid, and he slept for about 2 hours and then felt better. We're going to break our pattern this week and try to get his blood counts checked. He hasn't had to do that for a few months, usually we've been able to get away with checking them while he is getting chemo. That saves him from having to get stuck in the arm any extra times. But, I had a talk with him, and he agreed that it would only be a quick arm stick, and that it shouldn't be that bad. I don't expect to see anything crazy there, but it's nice to know where his levels are. If the pain continues in the next few days, we'll be going to WPB to see his doctor. I'm running out of ideas, and I absolutely can't STAND to see him uncomfortable!!!!!!!!!!!!!!!!!!!!!!!!!!!!
CANCER SUCKS CLUB:
The buttons are still coming......I will hopefully have a photo up here no later than Tuesday.
Scott
P.S. I've decided to give a real clue/hint as to what the surprise is....but don't expect too much....I'm not a giving kind of guy. The following sentence contains enough information to determine what the surprise is going to be....however, it is written in a code. The code is of my design, so don't go looking in any books, and if you do somehow figure it out, please don't post the answer on here...email it to me and I'll let you know if you are correct! Maybe you'll even get a free button for your efforts!
Kehjxmmthxnkebkdbjxcyhdxhziebnnhyhokhmkehveckccqudbsbsm dbjxckcbvvhbjcskehqjcskvbwhcqkehghavbwhqcjkehdbjxcyhgxhzi qczsmbkxcs!
Now, I've somehow forgotten to add the spaces between the words....that would make it too easy! So, if no one gets it after a year or two....I'll add the spaces between the words. Remember....NO GUESSES IN THE GUESTBOOK! I DON'T WANT THIS ANNOUNCED UNTIL IT IS TIME!!!!!
Saturday, December 28, 2002 at 09:42 AM (CST)
Ahhhhhhhhh the weekend. No stress right? THINK AGAIN!!!!!
BATTLE STATIONS....BATTLE STATIONS....EVERYONE TO YOUR BATTLE STATIONS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Yesterday was yet ANOTHER stressful day in the battle with CIGNA insurance. I was consulting with my generals in the war room, formulating an attack plan, and we were hit with another sneak attack by the enemy. After complaining that they had conveniently left Zman's name off of the enrollment form, CIGNA very graciously sent a NEW form for us to use. And this time, they listed him as Rebecca's spouse! Now, FAR be it for me to judge couples with a large age difference, (I am 13 years older than Rebecca), but COME ON FOLKS, not only is Rebecca 18 years older than Zachary, she is his MOTHER. I believe Freud with have something to say about that kind of relationship. Well, I of course called the conversion policy office and asked for the inept young lady whom I had spoken with 3 days ago. She was of course NOT going to be in until Monday. So, I gambled with the yutz (thats a cool yiddish word that I think means idiot/moron) and explained (using small words so as to confuse him) that I did not appreciated the way CIGNA was handling all of this. He of course pleaded the fifth, and said that they "have no knowledge of Zachary's illness or case, so they would never purposely cause us problems." (After I stopped laughing, I said) "You folks need to stop making this difficult. Zachary has received letters wishing him well from our Governor, two former Presidents, our Vice-President, and our current President. To name a few. I don't want to have to make some calls... these people will have the insurance police investigating more orifices than you knew you had!!!!!!!!!!!!" Well, needless to say, he didn't want any full body cavity searches done in the near future, so he faxed new forms.
But, this shows us all that these insurance companies will go to ANY lengths to avoid keeping patients like Zman on the books. They care about nothing but the bottom line. If you are reading this journal entry, and you are currently in a similar battle, DO NOT LET YOUR GUARD DOWN. These folks fill puck with you every chance they get. (Substitute the letter 'f' for the letter 'p' in that last sentence please. There is only one, you figure it out.)
MEDICAL UPDATE:
Zachary slept well last night, and woke up energized and hungry. This is all good. We plan on relaxing today, maybe we'll watch some football, and tonight, we'll probably go to the rollerblade hockey rink. I play there when I get a chance, and Zman likes to skate around and shoot the puck a little. When he's feeling good, it's a fun evening for him. Me, I try to avoid skating into the walls at more than 5 or 10 mph. It can leave marks. (On me, not the wall.) And, every once in awhile, I actually score a goal. Now, don't be impressed, my friend Eric always says, "Even a blind squirrel finds an acorn once in awhile."
CANCER SUCKS CLUB:
Well, for those of you that were wondering whether cancer still sucks, DO WE REALLY NEED TO ASK THAT QUESTION? If so, lets email Jeff or Kathy or Scott or Ruthie or any of the other parents or kids battling this crap.
Scott
P.S. The surprise may take longer than expected to reveal, I am waiting for the official word, and I don't want to jump the gun. Sorry. I'll give you all a clue though ....................on second thought.....NAH.
Friday, December 27, 2002 at 01:27 PM (CST)
Welcome to another day of my insanity. For those of you that faithfully read my journal entries, but are sometimes confused as to what in the world I am talking about. There are many days that my journal entries include comments or responses to entries that have been made in our guest book. SO, if you read the journal entry, AND you’ve enjoyed it, you MAY want to venture into the guest book area and read some of the comments that friends and families have made. By entering the guest book area, you are in NO way obligated to add your own comments. You can browse that area freely. HAVING said that, I am once again compelled to respond to some persistent guest book participants.
There are TWO contests that are currently NOT taking place on this web page:
CONTEST #1 THAT IS NOT TAKING PLACE. I am offering NO prize for the person who can guess what our little secret is. Please do NOT feel compelled to take wild, off the wall guesses as to what is going to be announced. I promise that when I get the final word, I will let all of you know. It is not going to change the social, economic or political situation in any of our cities or countries. It’s just something nice for Zman to be proud of.
CONTEST #1 THAT IS NOT TAKING PLACE. I feel I have adequately proven the existence and whereabouts of my wife and son. There is no contest currently taking place to find a part of the house that I have them locked or chained in! They are free to roam about the quite roomy cages that I provide for them. SO, please refrain from insinuating that my controlling personality has me locking them up somewhere….it’s simply absurd.
Now that all of that has been addressed, we can move onto more pressing matters.
MEDICAL UPDATE:
I wish I could say that Zman is feeling great. He was on Christmas, and then yesterday his belly started bothering him again. He has been playing with friends and staying active, so it’s hard to get a handle on whether this is pain from something to TRULY worry about, or just from him being more active then when we were in the hospital. We’ll keep an eye on it and see what we can figure out. He seems to be somewhere between constipation and diarrhea.....not as happy a place as one might imagine.
CANCER SUCKS CLUB:
Buttons, buttons, whose got the buttons? I WILL on Tuesday. At least that’s what they are telling me. I should have my first shipment of 1000 buttons on this coming Tuesday. Some of them are already spoken for, so if you are interested in getting some in the near future, please email me at the address on this page and I will let you know what the cost is going to be. I have been crunching numbers for days, and I have determined that they will be somewhere between $1.00 and $5,000,000.00. Please bear with me as I navigate this tricky world of accounting and calculating. (I’m leaning towards trying to get the $5,000,000.00 for the first one, and then giving the remaining 999 buttons away.)
When they come in, I will take a photo of Zman wearing one, and it will be posted in his photo album. Basically, they have a black background, with bright yellow lettering. They read: CANCER SUCKS CLUB. The words are stacked so they fill the button better.
That is all for now, if I get any more bright ideas, I’ll add them to this entry later on tonight.
Scott
P.S. HA, I made it all the way through this entry without talking about my underwear!
Thursday, December 26, 2002 at 05:32 PM (CST)
Ahhhhhhhhh.....Christmas is finally over. Now all of the snow birds can go home.......(yeah right.) Well, Zachary STILL has toys that he hasn't taken out of the package yet! Do you think he got enough? (Don't answer that, please don't answer that......I can hear Diane's voice making me feel guilty already...."They go through so much, they deserve as many toys as possible.") And I'm not disagreeing with that logic......but can't we draw the line in the sand somewhere?????? Oh well, as long as he's happy!
Now, to set the record straight on another issue. Our good friend Barbara from St. Mary's left a guestbook entry that hinted at me being some sort of control freak with this page or something. Well I never!!!!! Hmph!
For those of you that live in other states, SE Florida is pretty much AT sea level, so we have NO basements. Therefore, it is impossible for me to have chained Rebecca and Zachary in the basement. What further proof do you need? I can take a picture of them holding today's newspaper while smiling.....and if they won't smile....Well, lets just say, I've got ways of MAKING them smile. Like parading around in my underwear...that usually does the trick. THE BOTTOM LINE IS-------THEY DO EXIST (Just like the M&M guys and Santa in that commercial.) So back off people......if they want to write journal entries, let them develop their own psychosis and mental disorders and then THEY too can have their own webpage to vent on!!!!
As for this page.......[use your paranoid meglomaniac voice while reading this next part.] "It's mine.....all mine."
Medical News: No news is good news. No pain today, this is a good thing.
Cancer Sucks Club: Well lets see, Cancer still sucks....it's important to remember that......I don't want anyone to forget that. The forcast for the weekend has slightly cooler temperatures with a mild breeze and of course, we expect cancer to suck right on through the weekend. Tune in later for any breaking news.
Scott
P.S. I still can't tell you the secret yet...sorry. I'm hoping sometime next week. If not, definately by mid November of next year...so, there you go!
Wednesday, December 25, 2002 at 09:13 AM (CST)
MERRY CHRISTMAS EVERYONE!!!!!
I hope this journal entry is finding all of you snuggled up with your children/families enjoying the true spirit of the holidays............batteries, instructions, loose parts, wrapping paper everywhere, high cholesterol foods.....you know....the good stuff!!!!!
No, really, we wish everyone a peaceful, happy day. Maybe we can all take a break from the battles that we are raging. I know some of our friends are in the hospital, but we are with you in our thoughts and prayers.
Zachary woke up today feeling great. He has opened all 14,298 gifts that he received, I've got a dumpster out back for all of the trash. He is playing like any other 8yr old boy whose only concern is, "Which toy do I play with first." I will try to get a photo from today into the album so everyone can see him with his toys.
Thank you to all of the organizations and individuals that took the time out of their lives to reach out to our family with donations, gifts, thoughts and prayers. You have all made this emotional season for us, much more enjoyable and bearable.
Scott
P.S. The surprise is still coming. We're waiting for the final word.
Tuesday, December 24, 2002 at 10:45 AM (CST)
***WARNING***WARNING***WARNING***WARNING***WARNING***
THIS JOURNAL ENTRY IS RATED 'R' FOR LANGUAGE AND CONTENT. NO ONE UNDER 17 IS PERMITTED WITHOUT AN ADULT.
First things first. We are NOT having a baby! All of your feeble attempts to goad me into revealing the secret ahead of time will not work.....it is a Zman related surprise that has NOTHING to do with his health. It is an unexpected addition to his celebrity status.....and THAT is all I am going to say about that. (That last part I wrote in my Forrest Gump voice.) Now, time to slay the dragon.
[Brief history] Rebecca and Zachary are covered by CIGNA insurance. Rebecca's old company switched a few years ago, so we've had to deal with these people for quite some time. I would like to officially go on record as saying:
THE PEOPLE AT CIGNA ARE, SCUMBAG, LOWLIFE, HEARTLESS, CONNIVING, BOTTOM FEEDERS THAT, I WOULD NOT URINATE ON IF THEY WERE ON FIRE!!!!!!!!!!!!!!!!!!!!!!!!!!!!
(For the record, I held back there in case younger eyes found their way to this page.)
These bacterial scum have been trying for over two years to get us to drop coverage on Zman so they could be relieved of the financial responsibility regarding his health. They have repeatedly mailed cancel notices late, to not give us time to respond, and they have fought us on treatments too many times to mention. When we sought treatment in NYC, they fought for over a month, making us believe it WOULD NOT HAPPEN. Then, we found out that Zman is protected by a Florida law that requires insurance companies to pay for cancer treatments out of state for children, if the treatment is not available in Florida. This was surely something they knew, but they were hoping we would go quietly into the night. Now, we are at the end of COBRA. (For those of you that don't know, COBRA is the insurance plan that is federally regulated, it guarantees that when you lose or quit a job, you will have an additional 18 months of insurance coverage so you can find another policy and not have a lapse in coverage.) Well, Rebecca is not back to work, so we are exercising our right to buy a conversion policy. (This is a more permanent policy that will cover us until we are able to get one elsewhere.) Well, we've had to beg over and over again to get the information. We filled out all of the paper work, dotting all of the "i's" and crossing all of the "t's." The paperwork came yesterday. They conveniently left Zachary's name off of all of the sheets!!!!!!!!!!!!!!!!!
I called them this morning, and after being on hold for ten minutes, their excuse was, "Oops, we must have forgotten his name, we'll send you new paperwork." In the meantime, the clock is ticking.....tick, tick, tick. We only have sooooo many days to get this done.....
AS PRESIDENT OF THE CANCER SUCKS CLUB, I AM INVOKING MY EXECUTIVE PRIVILEGE AND DECLARING WAR ON CIGNA! DO NOT BE FOOLED BY THEIR LOVEY DOVEY ADS IN MAGAZINES STATING HOW NICE THEY ARE TO CHILDREN AND FAMILIES. DO NOT LET THEIR LAME ATTEMPTS AT WINNING OVER THE PUBLIC FOOL YOU. FROM NOW ON, THE WORD 'CIGNA' IN A CONVERSATION NEEDS TO BE FOLLOWED BY "A$$HOLE$" OR "$HITHEAD$." TAKE NO PRISONERS IN THIS BATTLE.
I realize that many of you have fought and won or lost numerous battles with insurance companies over the years. And, I'm sure that if I asked, you could fill our guestbook with page after page of stories about many different insurance companies. This is my little payback for the past few years of torture behind enemy lines. I may still be a POW in this battle, but I'm not going to lay down without a fight!
Scott
P.S. Yes, we do have a case manager with CIGNA, and if all of their other employees are scumbag, lowlife, heartless, conniving, bottom feeders, then our case manager is the excrement that they release every so often. She is the queen of double talk. Have a nice day!
P.S.S. You've heard of the "Wrath of Khan." Welcome to the Wrath of Scott.
Monday, December 23, 2002 at 10:20 PM (CST)
First of all, don't panic! I have NOT revealed the surprise yet. It was not that lame Hillbilly song that I had on here the other day. I needed to get THAT out in the open...so everyone will be on pins and needles until I reveal "the secret." Also, I think it is only fair to inform everyone that since it is so late right now, 11:29pm local time, I AM writing this journal entry in my underwear. Now, calm down everyone.....this isn't going to deteriorate into some x-rated journal entry....I just wanted to be upfront with everyone.
Medical update:
Zachary asked for Tylenol tonight. He had a headache and his ankles were hurting him. Hopefully he will sleep through the night without pain. I really hate it when he's got pain.....the unknowns suck, the worrying sucks, and of course....cancer still sucks.
Cancer Sucks Club:
Well, the buttons have been officially ordered. I saw the proof tonight and they should be here sometime early next week. I will give further details on that, when they arrive. I was doing some math, (for no particular reason) and based on the rates of cancer in children listed on the federal webpages, there is a new child diagnosed with cancer about every hour in America. That really sucks! This club is going to have WAY too many members. We need to cure this and move on with our lives.
"As President of the club, I hereby make the motion to have cancer go away for ever. Will anyone second the motion?" (Lets see how many seconds, thirds, fourths, etc. that we can get.)
Scott
P.S. [Singing like a teasing child] "I've got a secret, nanny nanny boo boo."
Sunday, December 22, 2002 at 06:31 PM (CST)
****WARNING****WARNING****WARNING****WARNING****WARNING
THIS IS THE SECOND UPDATE TODAY. IF YOU ARE CONCERNED THAT YOU MAY HAVE MISSED SOME VERY IMPORTANT MORSEL OF INFORMATION, THEN CHECK THE HISTORY!
Well, we got home ok. Zachary did much better today with chemo than he did yesterday. No nausea or dizziness, so that is a good thing. Well, we got back the urine results from this latest round. The two levels that matter, HVA and VMA are statistically unchanged. In other words, they are so close to the last time, that you can't say they've gone up or down. The doctor was a little bit disappointed that the levels didn't drop, but he did concede that we are maintaining our current position, which is something. We are scheduled to be home for two weeks, then we go back for more chemo on the 8th.
Freebie song, sung to the theme of the Beverly Hillbillies.
COME AND LISTEN TO MY STORY ABOUT A BOY NAMED ZMAN,
WHEN IT CAME TO BRITANY SPEARS, HE WAS THE NUMBER #1 FAN.
HE WAS PLAYING WITH HIS FRIENDS WHEN HE'D JUST TURNED SIX,
THEN CANCER HIT HIM HARD AND MADE HIM REAL SICK.
NEUROBLASTOMA THAT IS,
TUMORS AND BONE LESIONS,
BONE MARROW TOO.
WELL THE DOCTORS ALL SAID HE'D NEED SOME HEAVY CHEMO,
SURGERY, TRANSPLANT AND RADIATION TOO.
HE FOUGHT REALLY HARD AND GOT INTO REMISSION,
THEN THE CANCER CAME BACK, WITHOUT ASKING FOR PERMISSION.
CANCER SUCKS.
I know, I know.....not one of my better efforts, but I type what I think. I'll be working or sitting at the hospital and my entire journal entry will come into my head. I'll then refine it all day, then just type it on in when I get near a computer. Thats the system that has gotten me to this point.......and you know what they say, "If it isn't broken, don't fix it." or "If it is broken, don't ask Scott to fix it, because he's no carpenter!"
Hey Bo, Zachary got a good laugh from your guestbook entry....it just goes to show you....a little effort can put a smile on an 8yr. old's face. (A VERY little effort.) Just kidding.
Scott
P.S. [Thinking] (I may have built up this surprise too much...you guys might be expecting some colossal announcement or something.)
Sunday, December 22, 2002 at 07:34 AM (CST)
Every day seems to bring a new adventure. Zachary has seemed more tired than normal on the this chemo. (Using the words 'normal' & 'chemo' in the same sentence should not be permitted.) Anyways, I felt that maybe he wasn't getting enough fluids. Normally (there it is again) we leave the hospital after chemo, and go about our business. So, yesterday, we talked with the nurse and decided to give him about two extra hours of hydration. We left around 2:30 and got back to Quantum House. Zachary took it easy, decorated some cookies and then took a nap. He woke up around 5:45 and was hungry, so we met our friends the Mathis's (minus Bo...getting ready for work) for some dinner and the new Wild Thornberry movie. Unfortunately, after dinner Zachary started to complain about belly and side pain. It literally had him doubled over. We made it to the restroom in the theater, and he got very sick. The movie hadn't started yet, so the manager was nice enough to refund our money, and we took Zachary back to the Quantum House. Zachary's doctor told us to watch him, and if he got sick again or had more pain, we were to bring him immediately into the hospital. (About 400 yards away.) Luckily, he got comfortable and slept through the night without any more problems. It has been quite some time since he has gotten sick like that. I was really getting used to chemo without major side effects. I know he was too.
This may have been just a small bump in the road, or it may be that things are changing for us. We are scheduled to travel back to NYC the third week in January. We remain hopeful that we can continue with our current therapy until that time. Our next round of chemo is 1/8.
I've been thinking, (always a dangerous thing,) maybe some of the scientists out there that are working on their important projects could break away from that and find a way to stop time. (You were expecting me to mention a cure in there somewhere.) Well, we have alot of good people out there working on that. I would like to stop time....and in doing so, stop the disease where it is at right now.
CANCER SUCKS CLUB
Great poem Tom. I did send our address, so hopefully Zman and Mitchell will get those care packages you've been talking about. When we get tired of poems, I've got another idea for us to work on.....I'll give the poetry thing another couple of days though.
Scott
P.S. Still working on that surprise. Cancer still sucks.
Friday, December 20, 2002 at 07:09 PM (CST)
Well, todays journal entry is in response to Tom's request to rally behind Diane, who is fighting cancer. Her web page is http://www.caringbridge.org/ks/dianekeel. Tom has asked that I make a plea for everyone to motivate Diane to keep on therapy and not give up. I truly respect Tom's motives and his heart is definately in the right place, but, I have a personal rule that I adopted many many months ago regarding other patients and families that are living this nightmare. I do not feel that any of us can sit in judgement of another that is going through this. We may have our personal experiences to draw on, we may be able to understand the emotions better than most other people, BUT, we cannot second guess the decisions that we or anyone else makes. There are too many unknowns and too many aspects to this disease for us to sit in judgement. Now, having said that.....I would like to add that in February of this year, when Zachary relapsed, one of the first doctors that was called for an opinion was Zachary's transplant doctor. His opinion was, "Zachary has already had a transplant, why would you give him more chemo. Take him home and enjoy what time you've got." (Pretty scary huh?) Well, if we had followed that sage advice, Zachary would more than likely have been gone by the end of March. Here it is, December 20th, and he is still running around causing mayhem. For those of you that know us or have followed the web page, Zachary has had quite the active year since February. YES, he has endured about 15 weeks of chemotherapy, and fevers. YES, he has had many, many procedures and scans, BUT, he has been to camp, met many wonderful people, had numerous family gatherings, played soccer, roller bladed, gone fishing, traveled, stayed up with school, and the list goes on. SO, sometimes, when things look bleak, and no one is offering hope, there can still be sunshine in your dark life.
Diane, I don't pretend to know what you are going through. I don't know what your doctors have told you, or what you feel the longterm outlook is. I can only promise you that I will not judge you by how you choose to live your life, or fight this monster. There are only two ways out of the Cancer Sucks Club. One is by becoming a long term survivor. The other....well, I don't like to think about the other way. Our thoughts and prayers are with you.
Call me an egomaniac, but I would think that sticking around just to read my brilliant updates is reason enough to live a long, long life!
"You've got to be very careful -
if you don't know where you are going -
because you might not get there." Yogi Berra
Scott
P.S. That special announcement is still coming....it could be a week or so.....oh the torture!
Thursday, December 19, 2002 at 01:43 PM (CST)
"WISE MEN TALK BECAUSE THEY HAVE SOMETHING TO SAY. FOOLS TALK BECAUSE THEY HAVE TO SAY SOMETHING." Plato
So, which one am I?
(Lets not answer that one just yet....I don't know if my fragile ego can handle the truth.)
MEDICAL UPDATE:
Well, where to begin, where to begin? Well, the first two days of chemo have gone fairly well. Zman doesn't want to be in the hospital, even for a minute. (Big surprise there.) So, he has made it his mission in life to push me to the brink of insanity (not a far trip, I assure you,) by arguing with me on every little thing possible. We have managed to get through these two days, so, somehow, I imagine we'll make it through the next three. I just got off of the phone with NYC. After emails and studying calendars, we have agreed to our next round of this chemo on the 8th of January, and then we'll have one week off. After that, it's off to the Big Apple. We will have 3 days of testing, the 20th, 21st, and 22nd. I haven't worked out the travel arrangements yet, but the doctor has us set up for those days. The good news about these dates is, we will be there with our good friends Erik, Michelle and Cameron. They are going to the same doctor to be evaluated for a similar study. So, we will have some "backup" while we're there, and since they haven't been there before, we'll be the "resident experts." (Any assistance when dealing with that city is a BIG help.) No offense to those of you heartless, bloodsucking, souless, creatures that call NYC home, but, it takes a "special" individual to live there.
I would like to say that these plans are written in stone, but as Edward Noyes Wescott said, "The only man who can't change his mind is a man who hasn't got one." So, don't go holding your breath.
Zachary started getting back pain today as we were leaving the hospital. We gave him some Tylenol, hopefully it was nothing related to the cancer.....maybe he slept wrong. All of these little quirks make waiting for urine results that much more fun! It's like having a birthday party, only there isn't any cake or presents and everyone is beating you over the head with baseball bats. You know...that sort of thing.
CANCER SUCKS CLUB:
Well, I'm patiently (not really) waiting for more poetry. I guess I'll have to do some research and butcher up some famous poems. It's what I do best....defiling the great works of our time. You guys may not appreciate it, but it sure puts a smile on my face. Keep spreading the word of the club....buttons will be arriving soon. How exciting.
Scott
P.S. Special announcement coming soon......I bet the anticipation is going to drive a few of you nuts.
Tuesday, December 17, 2002 at 02:28 PM (CST)
Well, we're home for two whole hours!
Tampa was wonderful! Thank you Tom for the wonderful hotel arrangements that you made. Zachary and Mitchell had a blast at the dinner with the Tampa Bay Ligtning. (Hockey team for those of you that have been deprived of sporting knowledge.) Thank you to the staff of Camp Good Days and Special Times. They all worked very hard to make the evening a success. Zachary had two players at his table. One of the families was unable to attend, so Zachary had Brad Richards and Martin St. Louis with his wife Heather at our table. These people were great. They were sooooo down to earth. Their concern and interest in Zachary's condition was genuine and very touching. We've met some incredible people throughout this journey of ours, and I am continually surprised in a pleasant way by how caring strangers to our family can be. Brad and Martin sat with Zachary and helped put some of the toys together, (Check out photo #2 in the photo gallery) most of their teammates had left already for a team holiday party that was getting ready to start in another part of the building, but they stayed and gave Zachary the extra time, without being asked.
The bottom line here folks is this.......these are great people! When you hear about professional athletes or read about them in the paper.....remember what you've read here. It's one thing to show up because the team requires it's players to participate in the event, it's a WHOLE different thing to go the extra mile and really touch the life of an eight year old thats going through this nightmare.
CANCER SUCKS CLUB NEWS!!
Wow, I go out of town for one night, and everyone goes nuts writing poetry. Just remember, it's all Bo's fault. I did my little "Roses are red" thing, but HE started this trouble.....not me. Anyways, I love the poems.....and I'm not ashamed to admit that I'd like to see more. So, get to work! We're off to WPB for more chemo, so we'll be updating the page from down there.
Scott
P.S. Cancer still sucks!
Sunday, December 15, 2002 at 05:07 PM (CST)
[Broadcaster's voice]
The series is all tied up at 3 games a piece. We're in the bottom of the ninth inning, there are two outs and Bo Mathis steps up to the plate. His team is down by 1 run. He's got one man on first base, so if he can come up with a double or better, we'll have a tie game. Bo has been kept in check for most of this series, he's been walked several times, had a few singles, and struck out more than we're used to seeing. The new pitcher has finished warming up and is ready to deliver some heat in Bo's direction. It's too risky to walk him with only a one run lead, so this should be an interesting at bat. Here comes the first pitch and it's a fast ball......caught Bo looking, strike one. Wow, what a pitch. Two more of those and this series is OVER! Here come the second pitch, fast ball again, fouled tipped into the upper section over the plate....Bo just got a piece of that one. The crowd is wild right now....hoping to see a miracle. The third pitch is on its way, ball high and outside, the count is 1 and 2. The fourth pitch is low and away, 2 and 2. The crowd can sense the tension on the field....here comes the fifth pitch, just inside, full count! Bo stares down the pitcher and here comes the payoff pitch, fast ball, and Bo gets a piece of that one...foul down the left field line. Bo steps back, looks into the crowd and makes eye contact with DoubleM, DoubleM gives a small nod, as if to say, "Go ahead dad....knock the cover off it." Here comes the pitch, WHACK...what a shot....Mathis really got ahold of this one....HOME RUN. He's won the series with one swing.
For those of you that are slow on the uptake, this is my way of saying that Bo really knocked one out of the park with his poem....Rebecca and I really liked it! It made us smile first thing this morning when we read it! What a great way to start the day...with a smile.
Zman had a great day today.....he lasted through a very nice church service that included a holiday musical program. Then, we fried up some turkeys and had some friends over....and my folks. It was a little bit cool, but everyone had a great time. We had been given coupons for turkeys at Winn Dixie that had to be used by 12/31, so it worked out great...everyone brought a different dish and we made it a buffet.
Tomorrow we head over to Tampa for the dinner with the Lightning, so that should be a blast....and then we're off to the Quantum House for a week of chemo. I'll update from there and let everyone know how Tampa went.
Scott
P.S. Bo has laid down the challenge for everyone with his great poem. The songs were all wonderful, but it is time to move on. So lets see those creative juices flowing.
Saturday, December 14, 2002 at 04:23 PM (CST)
Welcome to another day in sunny/cool Florida. Temperatures in the low 70's have made this a beautiful weekend. (Is anyone out there in lala land buying into this "softer" milder Scott?) A gentle cool wind sweeps across our great state while a delightful sun bathes us with just enough warmth to keep us content. (Maybe the doctors upped his sedative doses....who knows?)
ZMAN UPDATE
Zachary had a rough night last night. He woke up around 3am with a belly ache. Thursday night he had 3 homemade smores (I would give you guys my secret recipe, but then I'd have to kill you.) and then last night he had two more for dessert. This MAY have contributed to the belly ache. That, and the fact that he eats a full meal about every 45 minutes, with snacks in between. Whatever money we're saving on not having to get him toys this year, (He's receiving PLENTY from all sorts of friends and organizations,) we're spending on food. Such is life!
We had a really nice day today. This morning was the Connor Moran holiday party at the Quantum house, the organization that sponsored us in the Season To Share article. Many of our dear friends were there, (here I go again with the mushy stuff,) and the kids got to play, see Santa (again) and enjoy the holiday food! After the party, we went to Lake Worth, there is a little league baseball team that read about Zman in the Palm Beach Post, contacted the Quantum House, and asked if they could present us with some gifts. We met them at the ball park just after they finished winning their second game in two days. Hurray for the WPB Warriors! These folks were very generous to us. They gave Zman two baseballs, one signed by the whole team, and one that was the second home run hit by one of their star players! They also presented us with a much needed donation to help get through the holidays. After meeting the team, they invited us to join them for lunch, they had a break between games. Zachary amazed us yet again. Our usually shy 8 year old, was sitting with the other kids (whom he had never met before) and talking with some of the adults like they were friends from years past. We are very fortunate to have met wonderful people like this that not only take the time to help a family like ours, they included us in there lunch/victory celebration. We hope to see them again in the near future at an awards banquet for the tournament they are playing in.
CSC NEW!
THIS JUST IN.....THIS JUST IN......CANCER STILL SUCKS.
Coming across the AP news wire just moments ago, a consortium of families fighting this battle have come to a unanimous conclusion......CANCER DOES INDEED, STILL SUCK. Not that there was ever any doubt about this fact, but they voted anyways.
I've noticed that there are not too many additions to the Club Objectives that I asked to be posted in the guestbook. I don't want to have to get rough with everyone out there in computerville, but I will if I have to. I cut you all of with journal entries. Yep, I'll stop updating the page every 18 hours and cut back to like......19 or 20. So don't mess with me.
Scott
P.S. Poem of the day.
ROSES ARE RED,
VIOLETS ARE BLUE,
VACUUMS SUCK BIG TIME,
AND CANCER DOES TOO.
Friday, December 13, 2002 at 11:59 AM (CST)
WHAT? Why are you here? What are you looking for? Just kidding. I know you are here to get news. Well, no news is good news. We will be back doing the chemo thing next week, Wed, thru Sun. We will also be redoing the urine test thing....so THAT will be fun. And, that pretty much sums up the medical news.
CANCER SUCKS CLUB**CANCER SUCKS CLUB***CANCER SUCKS CLUB
I went back through the history of journal entries, and found the origins of the club. The first mention in a journal entry was 11/21. The official club formation took place on 11/24. If you are new to this page as a visitor, and would like to see what inspired it all, have a look in the history. While I was there reminiscing about the good old days, (It's always good to torture yourself with harsh memories like that,) I realized that I never listed the club objectives, so here goes:
1). Keep the enrollment in our club as low as humanly possible.
2). Eliminate as many members as possible by having their children (family members) get a clean bill of health and long term survival.
3). Educate the public as to just how much cancer sucks.
4). Make the most out of the time we have with eachother in spite of how much cancer sucks.
Now, I know many of you have your thinking caps on. (Anything to cover the thinning hair.) Well, I think the song thing has run it's course for now, so, start adding your own objectives to the guestbook. Trust me, it's an excellent way to vent your frustrations with this disease. Don't hold back, but remember, bad language is not accepted, so keep it clean please. (My folks read this page, the "Jewish guilt" would be bad if I let them down.)
Scott
Thursday, December 12, 2002 at 01:03 PM (CST)
Oklay, mly tlongue isth gittn more thsor as I type mor entries. The slthobr isth gittn horrbl. I try to type worthds and mly tlongue slthips all over the plath. No nu medical newths to reeport, evree one isth fine. If I get out of thith stlrate jackit soon, I'll add a new jurnal entrly.
Thscott
Wednesday, December 11, 2002 at 05:19 PM (CST)
Well, well, well.....all I have to do is go off of the deep end and all sorts of people come out of the woodwork and sign the guestbook. Wonderful! I love all of the suggestions, I will give them all the attention they deserve. [Thinking to myself] (Now, where did I put that gasoline and matches....????) Just kidding, just kidding...you guys can be soooooooo sensitive.
Speaking of the CSC. The chairman of the board, (me) has made an executive decision and spent the last five dollars in the petty cash drawer today. I bought 5 lotto tickets for tonights 78 million dollar lottery drawing. Now, some of you may deem this as foolish, but I see it as a sound investment. If one of my five tickets is the sole winner, the payoff would be quite adequate. In Florida, you can choose between two payoff options. 1). 20 annual payments of $50,000.00 for each million you've won. That translates into approx. $3,900,000.00 each year before taxes, or, a take home pay of about $211,250.00 each month. 2). Or, you can take a lump sum that gives you about 50-60% of the prize amount. So, after taxes, you'd probably end up with about $30,000,000.00. Not to shabby!
Now, assuming I take the lump sum, there are some things that the CSC could use. We definately would need some fancy letterhead, and of course a return address stamp with our name on it, I imagine some other office supplies would be needed, maybe some nice polo shirts with a logo or something nice on it, bumper stickers, more buttons, an airplane, you know....stuff like that.
The airplane would come in handy. We'd be able to transport any child in the CSC region to any hospital they needed to get to....and of course....vacations would be easier to plan, having our own plane.
I'm thinking that I'd probably have a bunch of millionaire friends....it wouldn't be any fun having ALL of the money! It sure is fun to daydream......build the clinic in WPB that we've always wanted....maybe even open a neuroblastoma research facility close by.
Ok, ok....I've got a better chance of having Cindy Crawford becoming club secretary and Brittany Spears taking on the job of Zman's nanny......but it doesn't hurt to dream about winning....SOMEONE HAS TO WIN.
Well, my tongue is getting tired from all of this typing....the doctors say that if I can stay calm for a few more days, they'll loosen the straight jacket a bit. Promises, promises.
Scott
Tuesday, December 10, 2002 at 04:02 PM (CST)
****THIS IS THE SECOND JOURNAL UPDATE FOR TODAY****
IF YOU WOULD LIKE TO SEE MY EARLIER RAMBLINGS, JUST GOTO THE HISTORY SECTION AND READ UNTIL YOUR EYES CROSS!
Well, it has been a long, long time since I've been compelled by events to post a second journal entry in one day. I wish it was because I had some wonderful news to report, but no, this is pure "SCOTT GETS TO VENT" time!!!!!!!
By that, I mean that I am pissed! (Sorry for the bad language.) Ok, here goes.
Our primary means of communicating with NYC is by email. I will send them a message, giving them an update regarding Zman's treatments, and then the doctor himself will respond. The only email address that I have, belongs to the doctor. Our last corespondence included an update of how Zman was doing, and me questioning any results on the bone marrow sample that we sent to them two weeks ago. The doctor had responded that they were going to "hold" the sample for possible future use. (Whatever that means. Maybe they make cocktails out of it.) And, they were hoping to see us sometime in January. They never answered my question regarding the possibility of Zman having improved enough to be eligible for the phase II protocol.
And, they never gave us their take on how the marrow looked.....basically, they didn't want to comment on a sample that they didn't get from the child themselves. So, as I have written in the past few journal entries, we have been making plans to travel to NYC in January to get reevaluated.
Today, while I was writing my first journal entry, I got a message that told me I had just received an email from our NYC doctor. I immediately opened the letter, because we're not expecting any news from them....they are waiting to hear from us. The subject line read, "Congratulations." And the text area was completely blank??????????????????
Well, once I got my blood pressure under control, I called his office. His regular secretary was out, so I informed the one that answered the phone that I had just received this email, and I wanted to know what news the doctor was congratulating us on. Had they reviewed the marrow sample and found Zman to be in remission? Or, had they seen the improvement and decided that we were eligible for the phase II protocol? Either one would have been great news! The secretary told me he would check with the doctor and get back to me. Five long hours later, he called back and asked when I received the email. I went nuts! I said, "I told you earlier, the email came today, while I was sitting at my computer." He then asked if I was sure if it was from our doctor. I read him the address AGAIN, and informed him that it was the only address I had for anyone at his hospital. He put me on hold for a few minutes, then came back and said, "Your doctor didn't send you any email today, it must be an error.....ignore it."
At that point, the men in white coats secured the straight jacket firmly on me, while the doctors administered a sedative to me......I just woke up from that, and figured I'd update the page before they put me under again. By the way, typing an update with your tongue is more difficult than you would think. It's not that your tongue gets tired, it's getting past all of the slobber!
Scott
Tuesday, December 10, 2002 at 07:37 AM (CST)
Ankle pain, ankle pain, ankle pain.....my sanity is directly linked to Zman's level and frequency of ankle pain. He was very active yesterday (ACS party...I'll get to that in a minute,) so, there is a good explanation for the pain. But, waking up at 3am to give him tylenol is getting to be a little bit unnerving! The pain hasn't been every day, but 2 or 3 days in a week is enough to drive me nuts. We'll be testing urine levels again next week as we begin another round of chemo, so if anything fishy is going on....I guess we'll find out then. I'm still working on the NYC plan for January....I should know by the end of this month which week we'll be there. I'll keep everyone posted.
AMERICAN CANCER SOCIETY PARTY NEWS
Last night was the annual ACS holiday party. It was once again held at the City Place Sheraton. This is the third year that we've attended this party, and every year, it gets a little bit bigger and a little more organized. They do a great job keeping the kids entertained, with games, a wrestling exposition, Santa and Mrs. Claus, animals from the zoo, and a variety of activities. Each child was assigned an "elf" to accompany them for the evening. This is similar to the family pals that are used at Boggy Creek. I really like this system. It gives the children an all-night companion, and the parents get a break from having to watch over them every second. Apparently, most of the elves last night were from a local church. They had volunteered their time to spend the evening brightening up the lives of our children. They did a great job! Zachary really liked his elf Scott, and they had a great time, catching football, riding the fire trucks, hula hooping, and chasing around the hotel with the other kids.
Being the sentimental (emphasis on mental) sap that I am, I always experience a mix of joy and sadness at these events. I absolutely loved seeing many of the children and families that have become part of our lives, several of which we had only seen previously while staying in the hospital. Seeing Amanda, Gena, Mitchell, Cameron, Michael, Jessica, Ty-Michael, Ryon, Little Klye, Big Kyle, Cici, Jojo, and all of the other children running around having fun, was a real joy! I was saddened to hear that a few of the children had that wanted to attend, had fevers and were in the hospital. And, we all missed the families whose children did not survive this battle.
I don't expect much to happen this week with our medical news, so unless there is some extraordinary event, I will not post again until later in the week. Get over it!
CSC NEWS
Wow, the Cancer Sucks Club received it's first official piece of mail yesterday. Yep, Rebecca grabbed the mail when we got home from the ACS party, and sure enough, Cheryl had sent us a letter, addressed to: The Cancer Sucks Club. I may have to hire a secretary to handle all of the letters that will surely be pouring in soon! I have decided to go ahead and order the "Cancer Sucks Club" buttons. A friend of ours is taking some of our origami to a local street fair to sell and help raise money, and she feels that she will be able to sell "many" of the buttons as well. So, this is NOT A SOLICITATION! I am merely mentioning that I will have these buttons soon. Anyone that wants some, contact me through the email or over the phone, and I will give you details! (If I get kicked off of here for breaking rules, I'm sure there will be a collapse of the world markets, and mankind as we know it will forever be changed.)
[How do you spell egomaniac?]
Anyways, have a wonderful week everyone, and remember: No matter where you go...............there you are!
Scott
Sunday, December 08, 2002 at 11:27 AM (CST)
Hmmmmmmmmm. I'm beginning to think that someone is slipping steroids into Zman's medicines or food. He is eating like a horse! He eats breakfast, and literally 5 minutes later, he's hungry. He eats lunch, and 5 minutes after that, he's hungry. Dinner is no different. We walk out the door to go somewhere after dinner, and he is asking for more food. I guess this is a good thing. I know he gained 3lbs. between his last two rounds of chemo. I'm betting he'll have gained another 4 or 5lbs. this time. We'll see on the 18th when we start our next round.
Yesterday, we attended the P.O.S.T. (Pediatric Oncology Support Team) Christmas party in Jensen Beach. It was a really nice party. They had a magician, who was very entertaining, and the food was great. Thank you to all of the POST staff for putting on a great holiday party for the kids.
Our wild world tour as finally come to an end. I won't go into details, but lets just say there are about 5 countries in North Africa and Europe that won't be allowing us to return. Something about international embarrassments. I just don't get it. I admit, we maaaaaaay have said and done some things to an Arab princess that were inappropriate, but how was I supposed to know that you're not supposed to pull off their veil's.......you'd think they would put that kind of stuff in the travel guides. Curiosity can be a powerful emotion....I'm weak.....I had to see what they were hiding. Anyways, other than that and the small incident at the Vatican with the Pope's hat, we really didn't do anything that bad.
Well, the songs for the Cancer Sucks Club have been great. Have they run their course? I don't know. Maybe we are already in need of a new theme. But, it is only December 8th! Ok, we'll extend the time for submissions another couple of weeks. But, don't be shy out there, pick a song you like, and butcher it up for us!
Many many months ago, when we were still in remission and hoping for a permanent reprieve from this madness, I can remember envisioning a life without having to think about this disease or the toll it has taken on so many people that we care about. Now, having seen some very special families suffer the loss of a child, I'm having a much more difficult time seeing a light at the end of tunnel. Heck, I can't even find the tunnel! It's not that I'm letting this disease 'win', it's just that, I don't see things ever being the same. We can't get back the ones we've lost. We can honor their memory by living life to the fullest, and by keeping them close to our hearts, but, I know that many of us are changed forever. I don't know what the future holds for the Finestone trio, maybe there is a cure out there being developed right now, that will make it's way into our lives. Maybe not. Either way, we have been touched by the lives of many families that have included us in their battle with this disease, and we will never forsake those that have fallen before us!
During this wonderous holiday season, hug your kids a little tighter, look in on family and friends that you haven't seen in awhile, and say a prayer for all of the little warriors that have battled this disease.
Scott
Saturday, December 07, 2002 at 11:58 AM (CST)
No medical news to report today. Zman is feeling ok, so we're hoping to have a good weekend!
CSC
There is good news, and bad news! The good news is we made it to Israel, the bad news is we were late, and missed our flight to Switzerland. We were however, lucky enough to catch a late flight to Rome. It was our only option. On the flight we met Frank Perdue (Perdue chickens) who was sitting next to us. We were the only Americans on the flight, so he talked with us the entire trip. Once we landed in Rome, he invited us to join him for a private meeting with the Pope that he had arranged. We were honored, so we joined him. After some pleasantries, we sat down to for a snack, and Frank and the Pope started talking about a donation that Perdue Chickens wanted to make to the Church. Frank said, "I would like to donate 1 million dollars to the Catholic church. In exchange, I would only ask that you change the Lord's prayer from, 'We give us this day our daily bread.' to 'We give us this day our daily chicken.'" Well, the Pope smiled and replied, "As much as we need the donation, this is simply not possible. You are talking about thousands of years of history, we just can't change the prayer." Frank then said, "Well, I understand your position, but I will donate 10 million dollars." Once again the Pope declined, "I just don't see it happening Frank, I'm sorry." Frank persisted, "I will donate 100 million dollars for this." The Pope then said, "Frank, even if I wanted to, I don't have the authority to make this happen. It would take years of debates, and even then, I don't see it happening." Frank got a serious look on his face and then said, "Ok, I will give the church 1 billion dollars. You will be able to feed all of the hungry children and families, fix all of the run-down churches, and not have money problems for a long, long time." The Pope pondered this for a moment and then said, "Ok! We'll do it. We'll change the prayer to, 'We give us this day our daily chicken.'"
Later that day, we were invited along with Frank to an emergency meeting with the Bishops and Cardinals. The Pope addressed the crowd and said he had good news and bad news. The good news was, "We have just received a donation of 1 billion dollars, and we will not have money problems for a long time." "The bad news is, we lost the Wonder Bread account!"
------>That was a long way to go to get to the punchline. Hey, no one said I was a funny man.<-------
Scott
Friday, December 06, 2002 at 08:04 PM (CST)
UPDATE:
We heard back from NYC. They received Zachary's bone marrow sample, and, they will hold on to it? They do not want to analyze it. Something about not needing to, since St. Mary's has already said the disease is still present. Our impression is that they will wait for us to return for a whole workup, before getting too involved with tests and results. Oh well, we tried. In the meantime, we'll be doing our chemo, and hopefully buying the time we want. The quality time!
CSC:
You're all not gonna believe what we did. We get on this plane headed to England. And, I figured it was like an 8 or 10 hour trip, so we all passed out. Unfortunately, we had unknowingly flown the Concorde. It got there in 3.5 hours. We were asleep. We missed our stop. The plane ended up in Cairo Egypt before we woke up, and they kicked us off the plane. So, we took camels to try and make our way to Israel to get a direct flight to Switzerland. On the way through the desert, we stopped in this little town and had a wierd experience.....
I had no watch on my wrist, and my cell phone was beyond dead. Rebecca and Zman were getting some bottled water from a local 7-11, and believe it or not, the guy behind the counter was from India. Anyways, I'm standing in the town square, and I'm thinking about how we need to get to Israel by a certain time to make our flight. So I walk over to this guy who's tending to his camel, and ask him the time. He reaches under the camel, lifts up the camels private parts, as if weighing them, turns to me and says, "It's 12:15." I of course am in shock. I have never seen or heard of this method for telling time. About 5 minutes pass, and Zman comes running over to give me some water. I tell him about the camel, so he walks over to the man and asks him for the time. The man once again lifts the camels private parts, and says, "It is now 12:20." Zachary looks at me with a shocked expression, and then runs back into the store to get Rebecca. She was in the restroom, so 15 minutes later they return, with her asking me about the camel man and the time thing with the private parts. I tell her the story, and of course, she asks the man the time. He repeats the process and says, "It is 12:35." Our curiosity gets the better of us, so we ask him, how do you do that? He once again lifts the camels private parts with one hand, and with the other, points across the town square and says, "See that big clock on the tower across the park!"
Needless to say, we missed the 6pm Switzerland meeting time. Have a drink on us, we're working on getting there. I'm sure the camels would walk faster if I could learn how to say "mush" in farsi. I'll update when we get to another town with a computer terminal....it could be awhile.
Scott
Thursday, December 05, 2002 at 06:52 PM (CST)
Hello, hello.
Update:
Zachary is feeling well today. He got to visit his school and see some friends, teachers & office staff. No diarrhea, no pain. This is a good thing. Rebecca had a massage this evening. It was donated to her because of the season to share article. What a great thing. She really needed it!
CSC:
The xmas songs just keep on coming. Audra, Christi, Tom, Bo, and the list goes on. I'm printing them all up to bring up to the oncology floor when we're there in two weeks. The board of directors has been working so hard lately, that they have decided to call an impromptu getaway for the club. It will serve as a meeting for everyone, and a chance to kick back and relax. Since I miss skiing so much, I was able to persuade the board to choose Switzerland as the location. I hope it's not too short of notice to expect everyone to be there by 6pm Friday evening. (That is tomorrow.) Here are the directions. Fly over the Atlantic ocean to England. Then, turn south and fly into Liechtenstein. (Thats in Switzerland.) Head west from there to Urnasch/Appenzellerland, and then south from there into the Alps. There is a nice lodge I've heard of in Widnaus/Toggenburg. I'm sure you'll all find it. Get checked in, and we'll all meet in the bar. First round is on me. We'll ski, we'll talk about how cancer sucks, we'll get frost bite, we'll snuggle by the fire, we'll come home broke. So, it's settled. My next update will come from the Alps! See you all there.
Scott
P.S. Yes, I did look up a map of Switzerland to find the cities with the longest names. I've got Waaaaaaaaaaaaaaaay too much time on my hands.
Wednesday, December 04, 2002 at 03:13 PM (CST)
WOW!
I am truly impressed. The creative juices have obviously been flowing freely across this great land of ours. Keep the songs coming. (My newest entry is at the end of the journal entry.) As far as the touring idea goes.....it sounds good on paper, and I don't know about you guys, but I couldn't carry a tune if it was wrapped up nicely and stuck into a bag!
I haven't been sleeping well lately. I wake up and lay there, so last night, after my whopping 4 hours of sleep, I wrote today's journal entry in my head. (Lotta empty space in there folks.)
Zachary did not have ankle pain yesterday, so that was good. He did have some diarrhea, but that is easliy controlled with meds, so we're not too concerned.
I had the honor of meeting Scott and Ruthie (Seth's parents) last night. Unfortunately, it took place at the funeral home. I had been looking forward to meeting them on the floor at St. Mary's, so that Zman and Seth could meet and play together. One of the more frustrating aspects of this disease for us men, is the total and complete lack of control that we have over our families lives! (Men are control freaks....like THAT is news.)
Speaking for the Finestone family, our thoughts and prayers go out to Seth's family.
Cancer Sucks Club News!
The board of directors has been reviewing past journal entries, and it has decided to make two additions to the panel in charge of reviewing complaints about our club motto. For those of you that have forgotten, our motto is:
CANCER SUCKED YESTERDAY, CANCER SUCKED TODAY, AND CANCER WILL UNDOUBTABLY SUCK TOMORROW!
In addition to Jeff and Kathy, the board is placing Scott and Ruthie on this panel. The job of this panel, is to review any complaints about the harshness of our motto. Furthermore, the board realized it's mistake, in not having laid out guidelines for submitting complaints. So, here are the club guidelines for making those submission:
ALL COMPLAINTS REGARDING THE CLUB MOTTO MUST:
1). Be typed or computer printed on an 8.5" x 11" sheet of paper.
2). Top margin and bottom margin MUST be 5" each.
3). Left and Right margins MUST be 4" each. (We realize that this only leaves you 1" by 1.5", but if you can't get your point across in that amount of space, then you are just not trying hard enough.
4). Five copies must be sent. One for each panel member, and one for the board of directors.
5). After all five copies are done, soak them in gasoline and place them into a fire-safe can.
6). Wait for 15 seconds so the gasoline can soak in.
7). Toss a lit match into the can.
8). Wait for the flames to die down, then pour in one cup of cold water.
9). Stir well so that the ashes are mixed nicely with the water.
10). Pour the ash/water mix into water tight container and send to the address listed below.
If you have followed these steps properly, the panel will be able to easily flush your complaint down the toilet, without causing any clogs.
(Address for complaints)
Cancer Sucks Club
Attn: Review Panel
123 Areunuts Lane
Battlecreek, MI 12345
(We're just down the street from the Kelloggs factory.)
Scott
P.S. Here is my latest.
Sung to the song, White Christmas. (Is no song safe?)
I'm dreaming of a cure for cancer,
No more sick kids in this fight.
Where the chemo and radiation,
are figments of our imagination,
Boy, the future would be bright!
I'm dreaming of a cure for cancer,
where our kids can run and play.
Wouldn't our days be merry and light?
No more christmases in this fight!
Tuesday, December 03, 2002 at 02:38 PM (CST)
***MIDDAY JOURNAL ENTRY***MIDDAY JOURNAL ENTRY***
Wow, another witty entry less than 24 hours apart!
Where to begin, where to begin? Well, lets start with Tom. Hmmmmmmm. Well, it's too bad that I didn't specifically mention Jingle Bells as being OFF LIMITS! I mean, it's probably my fault, I didn't type slowly enough. Just kidding Tom. I'm just jealous that you came up with a better song using Jingle Bells than I did. No harm, no foul.
I received an anonymous suggestion from an unnamed fan, (Elton John.) He wrote that I may want to look into anger management. Hmmmmmmmm (again.) Well, Elton, I mean Mr. Anonymous. Anger Management huh? Well, thats an appealing offer/suggestion. But, I think I'll pass. I like being an angry worker bee. If I got myself into anger management, then I'd have to be in charge of my anger, AND the anger of all the folks working below me. I'm just not cut out for management. And, even if I did it, the next thing you know, I'd be in executive anger management. THEN, I'd have a whold $#it load of folks with anger that I'd be responsible for. No thanks. I'll stick with just being little ole angry me.
I'm working on my next (second) song, and I expect you the faithful readers to step up and knock a few out of the ballpark. Bo, Christi and Tom have already stepped up, so the rest of you are on notice, you don't want me coming up with too many more, trust me. It could get real ugly.
Scott
P.S. Surprisingly enough, Cancer Still Sucks today.
Monday, December 02, 2002 at 09:10 PM (CST)
I've just emailed NYC with questions regarding Zman's lastest tests. Basically, we're looking to get some input from them as to whether or not we've shown enough improvement to allow entry into the phase II study. I'm not holding my breath. (Not because I'm a doubting Thomas, but because I'm a doubting Scott.) Zachary is happy to be home. He's got his toys, his tv, and no one sticking needles into him. (Kids can be sooooo picky.) Tonight, he needed some Tylenol for ankle pain. It's probably from being more active now that we're home. I won't push any panic buttons unless the pain persists for several days.
For those of you that haven't checked in for awhile, the Cancer Sucks Club is moving right along. We've had some great song submissions by Bo and Christi. Theirs are in the guestbook. Mine is in the last journal entry. (Dated Saturday.) I've heard through the grapevine that some other friends are working on other songs. Leave it to me to lead a brigade of seemingly harmless people to defile the sacred songs of Christmas. I made some inquires today, and I've found a source for "Cancer Sucks Club" buttons. I may get them printed. I've read the fine print in the Caring Bridge Terms and Agreements, and you definately CAN'T sell anything through this page. Leave it to me to be the first parent to get kicked off of here for breaking the rules. If I decide to get them made, I'll let everyone know. It might turn out to be another way to offset expenses. First it was the origami thing, and now this. (I can hear Jeff now, "He's fulfilling the stereotype!") Be careful about picking on the chosen people. :)
For all of you parents of children with cancer out there in computer land, I am offering a free morsel of advice today. Find an outlet for your anger and frustration. Mine is obviously this page. The therapeutic value of this is huge! Keeping it all in will drive you crazy.
One final note for today. If some of my humor or sarcasm fails to make sense to you, don't try to adjust the monitor or bother with rereading the journal entry. The problem is not in my writing, it is in your head! I would suggest reading the text at a slower pace, but somehow I doubt that will help.
Scott
P.S. Cancer Still Sucks.
Saturday, November 30, 2002 at 12:44 PM (CST)
HOME AGAIN!
We made it home today after our whirlwind tour of West Palm Beach. The chemotherapy part of our stay was thankfully uneventful. Zachary is still tolerating this drug well enough for us to keep him on this regimen. Evaluating the benefits of continuing is where this all gets interesting.
The bone marrow results that I mentioned in my last entry remain encouraging. We are still waiting for NYC to take a look at the samples that were sent to them. Hopefully they will be pleased as well. The urine level this time did not come down, in fact, it went back up a little bit. This could be a diet related swing. The amount it went up was minor, so we're not pushing any panic buttons just yet. I guess we'll have to schedule a trip to NYC in January to let them do a full workup on Zachary so we have an accurate assessment as to where we stand. We'll probably decide on that trip near the 1st of the year.
I would like to make a "public" thank you to the Mathis family for including us in their Thanksgiving Day feast. We had a great day with our friends, we are truly lucky to have people in our lives that think of us during difficult times. I would also like to say thank you to the Charlton family. They were very kind to have included us in Matthew's party and to have kept us busy during our down times after chemo.
Zachary can be difficult to read sometimes. He has tolerated this chemo so well, that I think we sometimes take it for granted that he is "ok" with everything that we're doing. These past few weeks have been different. He started to lose his hair again. Of all the things that I would never have believed that would bother him, this was #1. He has been without hair for so long, that I'm used to it I guess. But, it was growing back nicely, and then all of a sudden, it started to fall out again. We were told that the current chemo we're doing doesn't always cause this, but it certainly can. I know this is a minor issue in the big scheme of things, but as a parent, you try to protect your child from anything that causes pain or grief. As a parent, you see your friends grieving over the loss of thier child, and you KNOW there are bigger issues out there than hair loss. As an eight year old, who knows what makes them tick at any given time? Not me.
The Cancer Sucks Club has lost another child. Seth lost his battle with this disease last night at St. Mary's hospital. We did not get to know this family well, but make no mistake....this was a loss for all of us! No child deserves this fate! No family deserves this agony! Our thoughts and prayers are with Ruthie and Scott and their family.
There are many good causes out there, save the whales, the trees, the aardvarks (I made that one up,) the owls, and the list goes on and on. But, what resource for our future is more important than our children? I can think of none. I don't know which organization is doing the "best" research into curing this disease, there are so many types of cancer, where do you begin? I do know, that with a little bit of effort, you can make a difference. Do a little bit of web searching, find a university or facilty that is working in a direction that YOU feel is helping, and make a difference, either through donations, or by helping to make others aware of who the "good guys" are. If you live near a hospitality house, (Quantum, MacDonald, Target,) call them up and ask what supplies they need. Or, cook a meal for some of the families. It's a great way to get involved, and you'll get to see your efforts make a difference. Sometimes sending a check doesn't have the same feeling! But, I'm sure any of these organizations would love your donations.
Ok, I'll climb down off of my soapbox and get back to doing what I do best....being sarcastic! The Cancer Sucks Club has it's motto, and it's bylaws, but, there have been some requests for a song. Well, I've given this some thought, (18 seconds exactly.) And, I've decided that no ONE song will fill the need. So, we will have songs that change with the seasons. Our first one needs to have words that go with a popular christmas song. So, get to work. And for those of you smart a$$ess out there, I don't know any Hanukkah songs, and I HIGHLY doubt any of you know any! (I'm referring to my non-Jewish friends that read this page.) So, we'll stick with the xmas songs. I'll get over it. I've done one using Jingle Bells, so that one is off limits! Find your own darn song! My song is at the bottom of this journal entry.
Scott
(sung to the tune of jingle bells)
CANCER SUCKS
CANCER SUCKS
CANCER SUCKS ALL DAY!
FOR ALL THE KIDS, IT TAKES FROM US,
WE WILL SURELY PRAY.
CANCER SUCKS
CANCER SUCKS
CANCER SUCKS ALL DAY!
FOR ALL THE KIDS, IT TAKES FROM US,
WE WILL SURELY PRAY.
LOSING ALL YOUR HAIR,
PUKING ALL DAY LONG,
FRIENDS THAT PASS AWAY,
BEING FAR FROM HOME,
NEEDLES IN YOUR ARM,
NEEDLES IN YOUR CHEST,
WHY DO WE COMPLAIN SO MUCH?
ISN'T CANCER JUST THE BEST? (sarcasm)
(REPEAT CHORUS UNTIL IT DEPRESSES YOU BEYOND REASON.)
Wednesday, November 27, 2002 at 08:25 PM (CST)
Ok...first things first. The update!
Our doctor called us today with preliminary results from the bone marrow taken yesterday. There were samples taken from both hips. The left side is completely clean. The doctor was going to check what that side showed last time. The right side last time, was between 5 and 10%, and this time it was less than 5%! AND, most of those cells were 'mature' cells, or 'not bad cells." So, it appears as though Zman is responding to the current therapy. We are still waiting for the urine results. The iron levels, which are used as a marker for neuroblastoma activity, have improved also. This level is supposed to be 0 - 450. In Sept., his level was 934. In Oct. it dropped to 911. Three weeks ago it was down to 867, and Monday it was 680. So, the trend is good, it's dropping. However, be warned. These markers are not definitive. Using any one marker to gauge activity is like reading tea leaves while looking through the wrong end of a pair of binoculars to determine who's going to win the super bowl.
Now, onto bigger news! The Cancer Sucks Club has drawn a wide variety of interest from across the globe! People from all over West Palm Beach and Hobe Sound have been bombarding our page with 4 whole comments! WOW, what a response! I may need to hire a full time secretary to monitor and respond to all of the inquiries. (That was sarcasm for those of you that don't know me.) Actually, several people have commented and said they did get something out of those journal entries.....so, here continues the saga.
We on the prestigious board of directors, (thats still just me, but it sounds more important this way,) have been doing some serious thinking about this cancer disease. It is amazing to us (me), that this diseases whole purpose is take over it's host (our child), only to then end it's own life when the child loses the battle. So, it is defying logic. Obviously, our children are not properly suited to host this disease. So, maybe we need to just find another life form that can do the honors. Now, I don't want members from PETA jumping down my throat when I make some suggestions. I'm just trying to think of a way to spare our children the agony of this horrendous disease! The first thing that comes to mind, are the fire ants! Would any of us really miss them? There are plenty of them around, so the different cancers can have at it! Pick and choose and end as many of THEIR lives as they want. Sure, it will take the fun out of walking barefooted in South Florida, but we can't have everything.
The next obvious choice would have to be the wasps and hornets! I know honey bees provide honey and help with the whole flower thing, but really folks, does anyone know what purpose wasps and hornets provide, other than freaking me out when they fly too close? Fine, it's settled...they've made the list.
Moving onto the animal world, I'm going to go out on a limb and offer up rats! Sure, they make great pets, if you're a witch, but for the rest of us, do we really need these disease carrying rodents that badly? I think not. And, if we're going to give rats cancer, why not let sharks join the party. I know they're an important part of the food chain, but ever since I saw Jaws as a kid, I've feared that I might become a link in that chain, so, bye bye sharks.
Well, now that all of that is settled, we just have to figure out a way to convince this nightmare to leave our children alone!
Happy Thanksgiving to everyone. May it be a healthy and happy day for all of you!
Scott
Sunday, November 24, 2002 at 08:42 PM (CST)
Well, we made it to the Quantum House! The weekend with my folks was great, they were celebrating their 45th wedding anniversary and we got to be there with them. We will be at the doctor's office at 8am sharp tomorrow, and hopefully onto the hospital after that. Tuesday we're scheduled for the bone marrow. Now on to bigger topics.......
WELCOME TO THE FIRST EVER CSC NEWS LETTER!
(Cancer Sucks Club) (Inspired by Audra's response to my journal entry)
MINUTES FROM LAST MEETING: There have never been any meetings, so there of course NO minutes. Plenty of long hours and days, but NO minutes!
MEMBERSHIP DRIVE: Some of you may be asking yourselves, "How do I join the CSC?" WELL SNAP OUT OF IT! This isn't something you elect to join......IT JOINS YOU. It's kinda like winning the lottery, only without the money, and instead of being wonderful, it sucks!
DUES: Well, after much consideration, the board of directors, (thats just me right now, don't be too impressed) had taken the issue of dues under serious consideration, and then it was immediately dismissed. It was decided that the families that are unlucky enough to have joined this club, pay enough through, pain, suffering, anguish, anxiety, fear, empathy, exhaustion, sweat, tears, and heartache, that they don't need to be coughing up money for some club.
CLUB MOTTO: Well yes, every club needs a motto. Something prophetic, well written, easy to remember, eloquent and appropriate. So, after much thought and many seconds of pondering, the quite prestigious board of directors came up with the following:
CANCER SUCKED YESTERDAY, CANCER SUCKED TODAY, AND CANCER WILL UNDOUBTABLY SUCK TOMORROW!
Now, I know some of you out there in la la land are going to take umbrage (fancy word) with the directors choice of mottos. Being as this is going to be a democratic club, (meaning that anyone can offer their input, and I'll type what I darn well please,) I have decided to set up a board of appeals that will review any complaints regarding this motto. This board will have the final word in all matters regarding the motto, what they say will go! I have decided to appoint our dear friends Jeff and Kathy, (who lost their son to cancer one week ago today) to head this board. I'm going to go out on a limb here and say, "I'll be happy to go along with any decision they make." Anyone dumb enough to want to submit a complaint or "less severe" motto for review, just email it to me, I'll see that it gets the attention it deserves.
CLUB LOCATION: Well, unfortunately, club members are located throughout the world. Even if we limited membership to those who are U.S. citizens, they are still spread throughout the country, some at home, some in the hospital, some traveling constantly between the two. So, lets just say that if you are unlucky enough to have joined our club, feel free to add your two cents in the guestbook, anytime you like. As for those of you that are members because of a friend that is a member, we welcome you with open arms. Your dues are $2,549.00 per month. You may make the checks payable to any of the families that pulled the short straw like us. Just pick a new family each month, and send away your money!
Scott
CSC Member since 3/16/00 (son has neuroblastoma)
CSC Member rejoined, 5/00 (mom has breast cancer)
Saturday, November 23, 2002 at 11:29 AM (CST)
We are in Vero Beach staying with my parents for two days. We will be heading to the Quantum House early Sunday. We have our cell phones for anyone wishing to contact us. I will update from the Quantum House this week.
CANCER STILL SUCKS!
Scott
Thursday, November 21, 2002 at 06:23 PM (CST)
Robert's funeral was today.
Mitchell had a scare this week with his counts.
Cameron has been at Duke for transplant over 4 months now.
Ty-Michael has had numerous scares with relapse this year.
Ryan is still battling GVHD.
Jessica just started the long road of maintenance.
Genna finished chemo and is now doing therapy.
Zachary starts chemo again on Monday.
The list is endless.
CANCER SUCKS!!!!!!!
Scott
Tuesday, November 19, 2002 at 06:44 PM (CST)
TIME FOR AN UPDATE!
Well, it has been a very sad week. As you probably read in my past journal entry, we lost a dear friend on Sunday morning. We are hoping to that on Wednesday and Thursday, during the services for Robert, that we will be able to offer our love, friendship, and comfort to our friends the Charltons. This disease seems to have changed the way we live our lives over the past two and half years. I'm sure that any of the other 'cancer' families would tell you the same thing, that your priorities change, your lives change, everything changes.
We are in a somewhat unique position with regards to Zachary's treatments. Because of his status as a relapsed neuroblastoma patient, we are limited with treatment options that offer long term relief, however, we have much more control over what Zachary will be subjected to. As many of you know, we have been doing outpatient chemotherapy 1 week out of every 3. Zachary has been tolerating this very well. We feel that his quality of life, compared to other chemotherapies, is excellent. He gets to stay with us at the wonderful Quantum House. We only spend about 4 hours each of the five days in the hospital. We can take him out at night to dinner, or a movie. When we are home, he plays and acts like a normal eight year old. When we started this chemo, we were told that some of the children are able to stay on this schedule for up to a year, as long as they are still getting a response to the drugs and not having progression of disease.
We have been waiting for the NYC study to open. It is a phase I study that is similar to the phase II study that we had wanted. Rebecca and I have been discussing the holidays, and how much we were going to subject Zachary to during the next few months. We obviously don't want to sacrifice long term potential quality of life, for short term quality of life. So, we emailed our NYC doctor and the doctor that was Zachary's original neuroblastoma doctor. They independently agreed that the current chemo is giving Zachary relief from progression of disease, and that he is enjoying great quality of life. They both felt that he could benefit from many more rounds of chemo before entering into the new study in NYC. The one doctor even commented that on phase I studies, "dose escalation doesn't happen until latter patients." This means, that if you are one of the first patients on a new study, you are not usually getting the higher (and sometimes needed) dosage of the drugs. Phase I studies are last ditch efforts designed for patients that have run out of options. These studies are used to determine how much of a drug the patient can tolerate.
So, you have to ask yourself. If my child is close to dying, and there are no other options, am I willing to take a chance on some new study? We are lucky to not be in that position yet. Zachary is very alive! So, if he continues to benefit from this chemo, we can keep him on it, and postpone the extensive travel and painful treatments that are waiting for us in NYC. The end result is, unless something changes in the near future, we are going to keep doing outpatient chemo in West Palm Beach for a few months, once every three weeks. Zachary will get to be home for the Christmas/Hanukah (go ahead and look it up...there are like 146 accepted spellings of that one,) season.
We may opt to return to NYC for a week of testing in January. This would show us where we are clinically. We will continue to do urine checks here, and we are scheduled for a bone marrow check next week. Zachary hasn't had his marrow checked since our last NYC trip.
The doctors have been very kind and flexible with us. Some of these decisions can haunt your thoughts and dreams if you let them. We are trying to walk the balance beam without falling off.
Scott
Sunday, November 17, 2002 at 09:57 AM (CST)
It has been a few days since I have updated the page.
Thursday evening, our good friends the Mathis's convinced us to reactivate our plans to go with them to Tampa for the Camp Good Day's Fishing Derby, and the Tampa Bay Lightning hockey game. We had been signed up for a few months, but with everything going on with all of our friends, we had canceled earlier in the week.
We arrived late Thursday, and got plenty of rest for a long Friday. The fishing derby was alot of fun! The kids got to meet Hulk Hogan, learn how to tie knots, cast a rod, and some of them even caught some fish. There was a luncheon and several celebrities present. After fishing, all of the children were presented with trophies and gift bags.
We had about 2 hours of "rest" after the fishing, and then it was off to the hockey game. Zachary and Mitchell had a wonderful counselor at Camp Good Days a few months ago that turned out to have great connections with the Lightning organization. Not only did we get great seats for the game, Zachary and Mitchell got to go into the media box, meet Phil Esposito & wrestler Test. After the game, we were taken down to the locker room, where they got to meet several players, the coach, and were given official game pucks! It was a long day, but the kids had a blast.
Any opportunity to allow these children to put their illnesses on a backburning, is a blessing to our families. We got back yesterday and took it easy. It was a long ride in the rain.
Last night we got caught up on our friends web pages. As I have mentioned before, our good friends the Charlton's have had their son Robert at home for about a week with hospice helping them. The journal entry last night told us that the nurses felt Robert was close to passing. And, this morning just before 8am, Robert Charlton passed away. Some of you that visit our page know the Charlton family and know what a loving and giving family they are. For those of you that have only read about them through these pages, words do not adequately relay how much this family means to us. We have known them since February when Robert and Zachary relapsed, and we feel truly blessed to have gotten to know Robert and his family.
There were many many days and nights that the boys spent playing cards at the end of the hall in St. Mary's. Robert was a few years older than Zachary, but he always made time to talk about Dragonball Z, Playstation, movies, and fishing. There is a picture of Zachary, Robert, & Kyle, playing at the end of the hall. All three are making goofy faces and having fun. I've put into Zachary's photo album. Robert is in the middle.
We will miss you Robert Charlton. You will not be forgotten.
Scott
Wednesday, November 13, 2002 at 06:30 PM (CST)
THOSE NEW PICTURES ARE STILL THERE! CHECK THEM OUT!
No news is still good news. Sorry I haven't updated the page since Sunday, but there really hasn't been a whole lot to report. The one bit of news that I do have is, we will be doing our next round of outpatient chemo during the week of 11/25 - 11/29. We were hoping to be in NYC getting ready for the new treatment, but the doctor emailed us and said, "Go ahead and do another round of chemo." This could be because he knows the study isn't ready. Or, it could be that the improvement in the urine has him hoping for more improvement, which might get us into the original study that we wanted. They like to keep us guessing. Keeps us on our toes.
Mostly, we've been trying to keep things going like normal around here. Getting caught up with house cleaning, yard work....the usual. Zachary is getting excited about seeing Harry Potter on Friday. We are going to get tickets tomorrow so we can see an early showing before all of the kids get out of school. We might also try to catch the new Bond flick this weekend as well.....we'll see.
Many of our friends are experiencing extremely rough times right now. We're glad to be home so that if we're needed, we will be accessable. In the midst of all of this darkness, the one shining light remains to be the kind families that we have grown to love and share experiences with. Being able to support these friends in their times of need, gives us a feeling of accomplishment and helps to alleviate the fear of enduring our madness without friends!
Scott
Sunday, November 10, 2002 at 11:51 AM (CST)
NEW PHOTOS**NEW PHOTOS***NEW PHOTOS***NEW PHOTOS
We are now home after another week of chemo. We'll probably take it easy today, watch some football, and just kick back. I'm emailing some other neuroblastoma experts to get more information regarding the urine fiasco. If I learn anything new, I will relay it in my journal entries so all of you urine groupies can follow along.
Scott
Saturday, November 09, 2002 at 07:31 AM (CST)
CHECK OUT THE NEW PHOTOS!!!!!!!!!!!!!!!
URINE ALERT***URINE ALERT***URINE ALERT***URINE ALERT***
THIS IS YOUR ALL URINE NETWORK....PROMISING ALL URINE NEWS, ALL DAY LONG!
Does anyone out there actually follow or understand everthing that has happened with Zman's urine tests? I doubt it. I know that our friends in the cancer community understand it all, thats one of the blessings of being on the oncology floor alot. You meet so many wonderful people that take an interest in the details of your child's disease. But outside of the hospital, do any of you understand the levels and meanings of results? Don't worry about it, I write about them to vent my frustration anyways.....it's all about me baby!
Well, I sent a very detailed list of specific questions to our NYC doctor regarding the urine, and upcoming treatments. This was a list that left no room for interpretation. I asked about 3,598 questions. The response was: "Thank you for the update." "Don't start the next round of chemo without checking with me." "I'm glad to see Zachary's urine levels are improving."
THAT WAS IT!
He didn't address one, not ONE of the questions that I had asked. So, I emailed another neuroblastoma expert that I rely on heavily for information. I gave him all of the history about Zachary's urine reports, the food interactions, the research I did with Pat that revealed the drug interactions....all of it. He responded by saying that he had never heard of any drug interactions, just food ones. He also said that interactions usually only have a small effect on levels, and that our last report showed marked improvement that he feels is attributed to the chemotherapy! Wow, great news right? Well, I don't want to be the lone pessimist in the group, BUT, the actual urine report from the lab has a warning on it about "numerous drug interactions." So, I have a tough time getting too excited about his response. Now, don't get me wrong. Either way, Zachary's levels are better than we originally believed. Either the chemo has knocked down the disease some, OR, the levels were never as high as the doctors believed. Who knows?
So, here we are in limbo. One of the questions that I asked the NYC doctor that didn't get answered was, "Does this improvement mean we are now eligible for the original protocol that we had wanted to get on?" He didn't answer that. I'm guessing that he will want to look at all of the clinical data, blood reports, urine reports, etc. Then, he'll probably want to do a new bone marrow aspiration and MIBG scan to see what changes if any, are there. That would mean going back to NY.
Needless to say, the next few weeks could get interesting. We may be in NYC for Thanksgiving week to do testing, with treatments starting the first week of December. I will keep everyone informed.
Scott
P.S. I have asked in the past that everyone check out the link to Robert Charlton's web page that is listed below. He is still in a heart wrenching battle for his life. Please say a prayer for Robert and his loving family. They have been wonderful friends to us throughout this year as both of our sons have tried to find a way to get past this horrible disease. Thank you!
Thursday, November 07, 2002 at 02:31 PM (CST)
CHEMO------DAY 4.
Chemo is still going well. Zachary is enjoying his time at Quantum House, and definately likes NOT sleeping at the hospital. Who can blame him? I got back the urine results today, and all I can say is: I TOLD YOU SO!!!!!!!
How long have I been writing on here about food and drug interactions relating to the HVA and VMA levels in his urine? I don't know, but the doctors have not given us any real direction on this.....it has been entirely up to us! Anyways, with Pat's help, I determined that the antihistimine Zman is on may be elevating his levels...so, I stopped giving him that drug 3 days before the urine sample was taken, and guess what? The one level dropped from 18.1 to 12.8, and the other dropped from 32.5 to 25.7. That is the largest drop we've ever had! I KNOW, that the current chemo is not responsible for this drop. This chemo is only maintaining a level of disease in him, and helping to prevent an increase while we wait to get on a new protocol. So, the antihistimine MUST have been giving us a false high this entire year!
What does this all mean? I don't know......I'm waiting to hear back from the NYC doctors and our local doctor to get some opinions on this. Maybe Zman WILL be eligible for the original protocol we wanted.....I don' know.
Anyways, everyone wants to hear about last night. Well, I wish I could say that he had fun and that it was a good visit with Mario Lemieux, BUT, that would be an insult to only use words like, 'fun' and 'good'. It was amazing!!!!!
The Panther's organization treated us very well. They arranged a Zamboni ride for Zachary during the second intermission....he loved that! Then, after the game, one of the officials gave him a game puck and took him into the official's lounge. After that, we went down to the locker area and waited for Mario to finish showering and doing an interview. When he came out, there were all sorts of people waiting to get a 'piece' of Mario....official looking folks....but he just smiled and walked right up to Zachary and acted like he has known him forever! It was just amazing. He gave Zachary a Penguin's knap sack, some pucks, two jerseys, and a bunch of other stuff. He also presented him with a photo with a personalized message for Zachary. He spent several minutes with us, chatted about all sorts of things, took pictures with us, and even invited us to a game the next time we're in Pittsburgh visiting my brother. Mario truly is a great person. Having just lost an overtime game after scoring the tying goal with 8 seconds left, he comes out to see Zachary with a smile on his face. He even commented that we got to see a good game. He may have thought that we were Panther fans because we live in Florida....I told him I grew up in PGH. and had seen him play since he was drafted. All in all, it was great. I couldn't have envisioned it going any better. I will get some of the photos up on here as soon as we get home this weekend.
THANK YOU CHEMO ANGEL CHERYL FOR MAKING THIS POSSIBLE.
THANK YOU VIDEOS FOR KIDS FOR THE GREAT LIMO RIDE.
THANK YOU PANTHER'S ORGANIZATION FOR TREATING US SO WELL.
.....and most of all.
THANK YOU MARIO LEMIEUX FOR MAKING ZACHARY FEEL LIKE A MILLION BUCKS!
Scott
Wednesday, November 06, 2002 at 01:12 PM (CST)
CHEMO---------DAY 3.
Ok....ok...so I skipped a day......so sue me! No news is good news. Yesterday and today's chemo went fine. We were out of the hospital by 1:30pm both days. We checked Zman's blood counts today and guess what? His ANC actually went up!!!!! It was only 600 on Monday, and now it is 1044. So, we had guessed correctly that the cold was probably giving him a low count. We are still waiting for his urine results which should be back tomorrow or Friday. Right now, Zman is napping. He is saving up his energy for the big game tonight.
Videos for Kids called, and they have arranged for a limosine to pick us up at the Quantum House and take us to the hockey game in Sunrise. Zman is equally excited about the limo ride and the hockey game. Go figure? They are holding special passes for us to go into the locker room and meet Mario Lemieux and the team after the game. Zman has been talking about this for awhile....he is pumped!
We'll try to get some great photos and have them on here once we get home.
On a more somber note, I met one of the new families on the floor today...there are two from the past week or so. As you walk down the hall, you can't miss that "look", like a deer caught in the headlights, of a newly diagnosed family. As a "seasoned" parent, we try to offer advice and comfort, knowing that when we walked in those shoes, no words could remove the fear and anxiety that consumed us. The one family has a very young child (about 1 yr. old), and she expressed her frustration with not being able to communicate with the baby about what was going on. I could only offer my observations of having met many families with children diagnosed at a variety of ages. The very young ones can't tell you where it hurts, and you can't easily explain what is happening to them. But, a year or two from now, they will not remember any of this. The 3-6 year olds, can communicate a little bit better, can understand some of what is happening, but they too are at an age where treatments can get overwhelming. The older children, 7 and up, they can understand alot of what is happening. They can even help in determining plans of action. Unfortunately, they will remember this and they know how to manipulate the parents when they need to. My overall conclusion is: THERE IS NO GOOD AGE FOR A CHILD TO GET DIAGNOSED WITH CANCER!!!!!!!!!!!!!!!!!!!!!!!!!
How prophetic, huh?
Keep praying for all of "our" families. There are many many children fighting for their lives each and every day of the week.
Scott
Monday, November 04, 2002 at 05:50 PM (CST)
CHEMO-----------DAY 1
Day 1 went well. We got to the doctor's office at 8am. Had Zman's counts checked and got seen by the doctor. His ANC was a little bit low, but we took a vote and decided to forge on with chemo. Once we got to the hospital, it took the pharmacy awhile to mix up the chemo....(two parts frogs eyes, one part chicken hearts, three parts toad spleen...) you know...the usual! Anyways, they got it to the floor sometime after 1pm, so we didn't get out until after 2:30pm. The rest of the week should go a little bit better. Our nurse spoke with the pharmacy and I think we'll be getting out each day by 1pm. We'll see.
Rebecca spent the day at the Quantum House. She lost her voice with this cold that is going around, and we didn't want to risk getting any children sick on the oncology floor. Zman and I spent most of the day with a photographer from the Post. The Quantum House has selected our family as their "Season to Share" family for the holidays. So, they will do a story about Zman and our battle, along with several other families that have been sponsored by a variety of organizations like they do every year. The stories usually generate funds for the organization that sponsors the family, and the family gets items of need that are individualized for them. It works for everyone involved. (Zman is in need of a Ferrari, a hot tub, $5,000,000.00 in cash, and Britany Spears for a live in nanny.......we're not holding our breath.)
Zachary is getting excited about the hockey game on Wednesday. Hopefully he'll be able to stay awake through it so he can meet the players afterwards. Somehow, I think we'll manage.
Scott
Saturday, November 02, 2002 at 07:45 AM (CST)
Zachary has now recovered from his cold. Rebecca and I on the other hand, are knee deep in sniffles and sore throats. Oh well.....you can't fight city hall or a pesty cold bug.
***GOLF NEWS***GOLF NEWS***GOLF NEWS***GOLF NEWS***
The Connor Moran Golf event went well. We had a great time! All four of us contributed to our game and we ended up coming in fourth place out of about 20 teams. I lost 8 balls, (not a record for me on 18 hole,) but I did contribute some nice chip shots. On the putting greens, I usually went first in an attempt to get us a close second shot in case one the the other three didn't sink the birdie attempt. That strategy seemed to work pretty well, because the other guys could watch the path of my golf ball and see how it rolled. (Is this boring golf talk for you guys?) Anyways, the shot of the day went to Bo Mathis. We were on a par four that had water on the left, with the fairway on the right. It was about 286 yards to the hole which was sitting behind the water. I layed up a nice safe 3 iron on the edge of the fairway. Eric and Randy hammered their drives to the the right (safe) side of the fairway. Randy turned to Bo and told him to try for the green (over the water), he absolutely crushed a shot that landed about 6 inches off of the green. Probably 270 yards in the air! We chipped up and got an easy birdie. All three shots on that hole came from Bo!
With my lost balls and my consistant slice, I was the WEAKEST LINK (it sounds more dramatic if you read that using a woman's English snobby accent.)
For those of you with no interest in golf........ the food was great also! (There you go, everyone loves good food.)
We leave tomorrow for the Quantum House. The plan is to start chemo again on Monday. When I spoke with Dr. Gowda on Friday, he wasn't sure if Zman's counts would be high enough to give chemo. We need to get an answer from NYC on this. Zachary has had some ankle pain....two nights out of the past three. This is very disturbing. There really is no way (short of a bone marrow aspirate or MIBG Scan) of telling us whether this is "normal" pain from growing or exercise, or whether this is bone lesion pain from active cancer cells. When Zachary has had bone pain before, it always starts in his lower back. So, I'm hoping this is unrelated to the cancer. We're doing another urine test this week, and we're removing his antihistimine which may be elevating the levels. If this urine comes out higher than the last, then we need to change our game plan. It would be a pretty good indication that the cancer is now working to grow through this chemotherapy. That would put us in a position where we could no longer wait for NYC to start their program. We would probably try the 'take at home' pill that is available from a study in California.
That pill has shown some limited success in keeping the disease at bay for a year or two. Not the same excitement that the NYC study has shown, but it could buy us the time we need to get onto the NYC study in the future.
So many variables and possibilites....we're thankful that we're still in the game!
Scott
Thursday, October 31, 2002 at 11:06 AM (CST)
T-minus 1 day and counting!
The big golf outting is tomorrow, and I've been working all week on my excuses for doing poorly. First of all, I'm now officially sick! I've got this great cold/sore throat that is going around. I thought I had dodged the bullet, but no luck. So, I'm sure my already suspect golf skills will be sub par (no pun intended.)
Secondly, the wind has been kicking up lately....I'm sure that in some way will hurt my game...plus, the sun is bound to be a factor too.....(I haven't figured out how, but I need all of the excuses I can get.)
I've been following the moon phases very closely, and I've come to the determination that the current phase of the moon for Friday will have an adverse affect on the gravity of my balls, (golf balls that is.) If I could have had more time to prepare, I may have been able to obtain the services of an astrophysicist who could help me calculate the different variances of effect and how to compensate. Alas, I've run out of time...I'll just have to wing it.
You would think that the tournament directors would take all of my concerns into condideration when factoring the handicap. I realize the maximum allowed handicap is 36, but there should be special allowances for my circumstances that would permit me to play with something closer to a 50 or 100 handicap! I'm not holding my breath on that one. The mere fact that I have to carry the extra weight of tissues for my cold should be enough to throw me another 5 or 10 handicap points....my swing will surely be affected by the extra weight in pockets! Maybe I should submit a letter of protest in advance of the tee-off time...just to hedge my bets!
So, between my health, the wind, the sun, the moon, and my balls (golf balls again-you sickos,) it'll be a shock to everyone if I get through the day.
Oh, and for those of you that came to this page to get a Zachary update...his counts were checked today. Platelets and red blood look great! White blood cells are still a little low....we "should" be able to continue with on Monday. I'm waiting for a call from the doctor to discuss that issue. Zman is almost completely over his cold....very little coughing and very little stuffiness.
Scott
Sunday, October 27, 2002 at 12:15 PM (CST)
No news is good news! (usually)
Zachary is still battling his cold. It has improved somewhat. I am still a little bit concerned about his cough, but that too seems to have gotten a little better. Zachary's last blood count check on Thursday surprised us with a very low ANC (ability to fight infection.) His platelets and hemoglobin were great! So, we'll probably check things again this week. Just so we know whether or not he has to leave the house encased in a bubble or not. Hopefully the cough and cold will disappear here shortly. If not, we'll drag him back to the doctor's office and probably get a chest xray. The down side of that is, subjecting him to another test.....the upside is, two more xrays and his frequent xray miles will put us over the top! We'll be eligible for a trip to Mars!
Zachary is getting very excited about the upcoming Harry Potter movie. He's watched the first one about 78 times, and I read him the last three books. He's also excited about the fifth book's release and the fact that we'll be reading it together for the first time. (I had read the first four books a few years ago.) Anyways, it's something to look forward to. Zman took it pretty hard when Richard Harris died the other day. (Actor that plays Dumbledore in the movies.) I had to explain that they would find another actor for the future movies. He's very concerned that the next one won't look right for the part. (These are the kind of things you want you're eight year old worrying about. Not getting his port accessed, or chemo, or counts.) It's nice to worry about movies and books every once in awhile. :)
Next Friday is the Connor Moran golf tournament in Jupiter. We have put together a foursome to play the best ball format. I've put some thought into this, and I feel the best course of action is for me to yell "fore" now, and get it out of the way. I'm easily the weakest link on the team, but I drive a mean golf cart.....so I'm sure they'll use me for that. My putting is also pretty good, but I don't expect there to be many holes where you have to go through a windmill or bounce off of bricks to go through a log and up a ramp to the hole. If any of THOSE situations arise, I'm their man!!!
Scott
Wednesday, October 23, 2002 at 08:46 PM (CDT)
Ok, so I haven't updated the page in couple of days. I'm sorry! See, the problem is, I usually sleep on my side. Lately, I've been sleeping on my back, so when my brain fills up with all of the garbage that fills it, it can't drain out of one of my ears. When I lay on my side.... no problem....it falls out while I'm sleeping. So, here I sit with a brain full of thoughts jockeying for position. Unfortunately, nothing prophetic seems to be working it's way into the active parts of my brain (very small section, I assure you.) So, I've been unable to convey anything useful onto the computer.
Well, Zachary has had a cold since Monday. He has been coughing and has a sore throat and stuffy nose. So far, no fever! Rebecca on the other hand, has all of Zachary's symptoms, ALONG with a mild fever. Go figure! So, we hold our collective breath and pray for no fever for Zman. We took him to the pediatrician and they've started him on a different antibiotic that should knock out any bacterial infection he may be working on. If it's viral, we let it run it's course and try to avoid the fever.
Tomorrow we will have his blood counts checked. I don't expect to have any surprises, but it's nice to know going into a weekend where we stand. Just in case one of the key levels has dropped while we were looking the other way. Other than that, we don't really have anything planned over the next few days. Hopefully we'll all be healthy over the weekend!
For those of you that leave us messages in our guestbook. I find that they motivate me to write more journal entries. (hint, hint, hint) Don't feel obligated, but if I don't get my way, I'm taking all of my marbles and going home!!!
Thank you again for the prayers and thoughts that have kept us afloat in this sea of despair!
***This weeks special mention of thanks (new feature in my journal entries).......Jeff Charlton! Congratulations! You are being recognized for your continued friendship, advice, and uncanny ability to confound me with our religious discussions!****
Scott
Saturday, October 19, 2002 at 12:14 PM (CDT)
WE'RE HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
We got home yesterday afternoon, and it is nice to be here. We had a "good" week of chemo, got to see lots of friends, and hopefully made it one week closer to getting on our desired protocol in NYC.
Zachary has already had some diarrhea, along with an alarming amount of blood, but the doctors feel that he may have torn some tissue while having a large stool prior to diarrhea, so we're keeping an eye on his bowel movements. (One of my personal favorite pasttimes.) He's been drinking, so I'm not pushing the dehydration panic button just yet.
After spending a week with many of friends going through this battle, I've had alot of time to discuss matters of the heart and soul with folks that are in the trenches with us. Once again, I see many themes that run true to several of the families in this fight. Many of the same highs and lows. I've given this a fair amount of thought (sleepless nights,) and I've come to somewhat of an understanding as to WHY this disease is SO devastating to the family structure and lifestyle that everyone works for. Aside from the obvious ---- your child is sick and may die from this disease.......On a daily level, this illness can dictate when you laugh or cry, eat or go hungry, sleep or stay awake, work or stay home, watch tv or watch a monitor that is attached to your child, spend time with family or spend time with doctors and nurses, sleep in your bed or sleep at or near the hospital, and the list goes on!
I never really broke it down to the basic things we take for granted each and every day, but when I look back over the past 2.5 years, this disease has really dictated every move we've made. You try to retain control over your life and the lifestyle that you've provided for your family, but when sickness knocks on the door, you can't ignore it....it WILL NOT GO AWAY QUIETLY! Try to plan a night out with friends, maybe for just a few hours, and see if a fever doesn't pop up out of nowwhere and have you driving to the hospital for four or five unexpected days. Try to plan a meal out to spare your wife another night of cooking, only to remember that your child's blood counts are too low to eat anywhere that doesn't have outside seating...and then try to convince a restaurant that you deserve one of those coveted tables. Try to plan some play time for your child with his friends, only to find out that one of them has been coughing lately, and you have to cancel, scaring his friends parents into thinking they should never risk bringing their child around yours. Try to plan even ONE or TWO weeks into the future for treatments or family gatherings or work, only to have everything put on hold because of surprise results, or new scares.
Yes, we function. Yes, we dress ourselves in the morning, we drive, shop, eat, drink, sleep (sometimes) just like "normal" people. But, as we spent this last week with our friends in WPB who are fighting their own battles, I was able to see more clearly just HOW invasive this disease is. Now matter how hard you try, it finds a way to control every aspect of your life. You may think you have control, but you have no more control than the surfer that waits for the wave....he or she may have a great ride, but they have to WAIT for the right wave....they can't conjure one out of thin air, anymore than we can create a lull in the action to give ourselves a break!
We're home. Hopefully for two weeks. I don't expect Zman's counts to drop, they didn't last time. I don't expect him to get dehydrated, he didn't last time. The "plan" is to return to St. Mary's on 11/3, and to do chemo 11/4 - 11/8. "The best laid plans of mice and men."
Scott
Thursday, October 17, 2002 at 07:38 PM (CDT)
Hi everyone...thanks for stopping in to catch up on Zman.
Chemo is still going well. Zachary has only had mild nausea, which has been easily controlled with Zofran. Tomorrow is the last day of chemo this week. We are then home for two weeks. I received an email from NYC regarding the start date of the program we have been waiting for. They are now saying that it will be early December before it opens....(in retrospect, I should have asked if that meant 2002 or 2003.) Anyways, that means that the week of 11/4 - 11/8 we will be back down here doing more outpatient chemo. Today, we got back the results of the urine screen that was taken on Monday when we got here. The results are again....confusing! One of the two levels went from a 17.1 to 18.1 (normal is 0-9), the other went from 37.5 to 32.7 (normal is 9-18.) So, is it stable or is it improving while getting worse, or is it getting worse while it's improving...or is it improving while it's improving while it's getting slightly worse...while at the same time driving me crazy??????????
Please don't misinterpret my ramblings as frustration.. if I was frustrated, I'd have thrown this computer out of the window, after taping the urine report to it!!!!!!!!
Well, the report also mentioned the usual disclaimer about possible foods and drugs that can affect the outcome. One such drug is antihistimines. Now, Zachary has been taking one of those daily for about 2 years now. So, the obvious question is, has this drug been elevating the levels HIGHER than they would have been without him taking it? No one knows. We've only been checking urine since relapse in February, and the scans told us that the cancer was back, so everyone assumed that the high levels in the urine were just indicative of high neuroblastoma activity. Well, the cells have been active, BUT, with the chemo we've done, would they still be this high if he wasn't taking the other drugs? I guess we'll have to try and go without this drug for several days before the NEXT urine screen in two weeks. I just LOVE waiting on news....it's my favorite thing in the whole world. I mean, nothing pleases me more than NOT KNOWING WHAT THE HECK (Zachary was watching or I would have used a different word there) IS GOING ON!!!!!
Once again, the lizards outside the window are watching the glass with nervous eyes...waiting for a computer to come flying their way.....amazing how they can watch me with one eye, and watch a fly across the sidewalk with the other one.
Ok....this journal entry has sufficiantly updated everyone, so I am going to tuck little man in. Oh, we had a boys night out. Rebecca went to a Pampered Chef party, so Zman and I went to Fun Depot...lots of games, tickets, cheezy prizes, and a cool go-cart track (we won.) We had a blast!
Scott
Tuesday, October 15, 2002 at 09:25 PM (CDT)
I feel like I'm on an episode of Gilligan's Island.... A three hour tour today turned into a seven hour marathon!
The oncology floor was very busy today. There were many children coming in for procedures, and a few admissions also. The good news was, almost all of Zachary's friends from this past year of treatment were on the floor. Alot of his card playing buddies and PS2 buddies, so we were able to visit with other parents, and just be there for each other.
Zachary's chemo went well again. Tomorrow, they are hoping that the pharmacy will be able to get the chemo up to the floor earlier so Zman doesn't have to be hooked up to the I.V. all day again. He is still tolerating this drug well.
We took it easy after chemo and relaxed for awhile, then, we went down to Boynton Beach to see the Mathis family. Zachary and Mitchell wanted to get together, and we (parents) wanted to play Beyond Balderdash (board game.) We had a great time (even though we lost,) it really is great being able to take Zachary away from the hospital for the night to do something "normal."
I've emailed NYC with an update to try and get an anwser regarding our plan of action, so hopefully we'll get a reply soon. If the treatment program we want is opening soon, then we would be leaving for NYC in about two or three weeks. If not, then we'll be coming back here for more out-patient chemotherapy.
Other than that, we seem to be holding up ok. We're trying to focus on the here and now, and not let ourselves get too far into the future/unknown. I find myself slipping every once in awhile, and then I have to remind myself that we need to enjoy Zman's good spirits and health while we have them!
Thanks for stopping in to check on us. Say a prayer for all of the children that are going through this ordeal. Unfortunately....there are too many to list!
Scott
Saturday, October 12, 2002 at 07:32 AM (CDT)
Hello everyone....thank you for stopping in for an update!
Zachary is doing well. We are now down in West Palm Beach at the Quantum House. We arrived a few days early. Zachary's chemo isn't scheduled to begin until Monday, but we had a couple of things to do down here on Friday, so we came down early. I was asked by the Quantum House to speak at their monthly board of directors meeting. All of their members have seen the house and been to functions here, but some have not heard from a family that has used this wonderful facility. I gave a brief history of Zachary's illness and talked about staying here, and about our visits to the Ronald McDonald homes in Gainesville and NYC. Afterwards, I was pleasantly surprised that many of them had questions for me. They asked for more details regarding Zachary's illness, and about how they might improve the Quantum House for families. I usually have a difficult time going through Zachary's history, but I guess I'm getting more comfortable with relaying the story. This group was very caring and receptive to my comments.
After that, I dropped Rebecca and Zachary off at a local beach, where a few other families were meeting with Connor Moran Children's Cancer Foundation to video tape a commercial/promo video for that organization. They have done so much for us, we gladly participate whenever we're available. Rebecca says that Zachary was like a little movie star.....when Spielberg calls, I'll be ready!
While they were shooting the video, I returned to the hospital to try and help our friends that I mentioned in our last two journal entries. The Charlton's are fighting very hard to get their son Robert back into remission. He is still in PICU (pediatric intensive care unit.) Another family ended up bringing in BBQ for all of us, so we were able to visit with many of our friends that have always been there for us.
We've been able to draw comfort from so many sources over the past 2.5 years. Family, friends, and community members have all contributed to get us to where we are today. The greatest blessing to come out of this nightmare has to be the families that we've grown close to at St. Mary's. Having people that are living the same insanity there by your side, has been a tremendous, unexpected help!
Scott
Wednesday, October 09, 2002 at 07:40 PM (CDT)
EVERYTHING IS RELATIVE! THOSE OF YOU WITH HEALTHY CHILDREN READ MY PAGE AND THANK GOD FOR THE BLESSINGS YOU HAVE. WE READ OUR FRIENDS PAGE AND TALK TO THEM, AND WE THANK GOD FOR THE BLESSINGS WE HAVE.....IT'S ALL RELATIVE!
I remember having a long and difficult talk with Zachary one evening when he was depressed about having relapsed. Facing months and months of continued treatments, I had to come up with a message that would help to keep him focused on our goals. This was what I said:
"Relapsing is a scary thing for all of us. But, in a sense we are very lucky. Think of the families that are driving along and get into an accident, and their child dies. They have no warning whatsoever, no time to do the special things that they've always wanted to do. While we face a seemingly insurmountable battle, we have been truly blessed with quality time that has allowed us to do many wonderful things, and make many amazing memories. We can plan for the times when you feel well enough to travel and get out of the house....the other family didn't get that option. We got to make a wish, and experience a family getaway that would have taken us years to save for. The other family got no such wish. So, while we are not happy to face this disease, we are grateful for the amount of time God has given us!"
Zachary seemed to understand this message. On some level, I think he sees that he is special and that many people have worked hard to give him special memories. On another level, I think he yearns to be normal, and to not have the attention.
EVERYTHING IS RELATIVE!
Our dear friends the Charltons have returned from St. Jude's hospital in Memphis. Their son Robert was 90 days out from his bone marrow transplant when he relapsed. (I mentioned his story and web page in my last journal entry.) These wonderful friends were starting to see the light at the end of the tunnel, when this disease came back and turned their world upside down again. Now, they are facing more chemotherapy, in a desperate attempt to reverse the progression. If this works, they will need to keep the disease away for 6 months, so they can return to St. Jude's for another transplant! If you went to the page, you saw the incredible odds that they are up against. WE HAVE AN ACTIVE, ENERGENIC CHILD THAT IS ENJOYING QUALITY OF LIFE... EVEN WHILE GETTING CHEMOTHERAPY TREATMENTS.....WE ARE LUCKY! Robert will be hospitalized for his chemo. EVERYTHING IS RELATIVE!
NONE OF OUR FAMILIES SEEK PITY FOR OUR SITUATIONS...JUST UNDERSTANDING! Everyone asks what they can do for us... I say, live life to the fullest...enjoy the gifts that God has given you...don't take life for granted!
Scott
Monday, October 07, 2002 at 07:30 AM (CDT)
Welcome to a new week everyone! I am sorry that I haven't updated the page since last Tuesday. I know many of you rely on these journal entries to get updated information on Zman's progress.
I have been on a sort of self-imposed leave of absence from work. I worked out a deal with my partner where I get to take some time off to try and focus on what we're dealing with. Financially, it was not an easy decision, but, having the extra time with Zman and not stressing as much about work has been priceless! I have been off for two weeks, and intend to have off the next two. That will get us through the next round of chemotherapy. Hopefully after that, I will know where we are heading with Zman's treatments.
Zachary has been enjoying his time at home. He played soccer with some other home-schooled children. He roller bladed with me at the hockey rink. Saturday, we went to Lion Country Safari with Connor Moran Children's Cancer Foundation, and Sunday, we spent the day with my parents. Zachary got to swim and play in the public fountains in Vero Beach. All-in-all, he has been feeling very good. We are very pleased with how his body has handled this latest chemo. The doctors have made it perfectly clear that there is no chance of this chemo curing him, all it can offer is the chance of keeping the cancer at bay for awhile. Our NYC doctor has told us that some children have been able to use this drug for up to 19 rounds. Zachary has had four already, and each round consists of 1 week of treatment with 2 weeks off. So, if he DOES continue to benefit from this chemo, we could conceivably go another 40 or 50 weeks.
There are no rules of engagement when it comes to where we are right now. Our primary goal remains to get onto the NYC treatment program. That program is still in limbo, waiting for final approval. It could open in weeks, or months. For those of you that get to see Zachary on occasion, you know that he IS enjoying quality of life!
AT THIS TIME, I WOULD LIKE TO ASK THAT EVERYONE PLEASE GO TO THE FIRST LINK LISTED BELOW. (ROBERTMITCHEL)
THIS PAGE IS FOR OUR DEAR FRIENDS THE CHARLTONS. We met Robert and his family when Zachary relapsed earlier this year, and we were immediately drawn to their caring and giving nature. They have continued to be a source of support and friendship that we never could or would replace. Please add Robert's name to your prayer lists and keep this family in your thoughts. Thank you.
Scott
Tuesday, October 01, 2002 at 02:28 PM (CDT)
CHECK OUT THE NEW PHOTOS!
It is nice to be home! We had Zman's counts checked this morning, and they have actually improved. The doctor's had told us that many of the children do not have a significant drop in counts from this current chemotherapy. Hopefully Zman will be able to maintain these levels and won't be at risk for infection. We recheck them on Friday, and if by then they haven't dropped, then we are probably in good shape until the next round. (10/14 - 10/18).
The main side effect of this chemo is diarrhea. Usually it shows up by the third or fourth day of treatment. For Zman, it waited until yesterday, (8 days after chemo started.) Thankfully it hasn't gotten too bad yet. We've been able to keep him comfortable for most of the day on Immodium AD. As long as he keeps drinking alot, we should be able to avoid dehydration.
Rebecca and I are always receiving wonderful cards, emails, and messages that offer hope and let us know how many people are thinking about us. Today I received one from Phyllis, who runs our shop, that was really touching. I thought maybe I would post it here:
"I'll bet you've had about enough of people telling how strong you are and how great you're doing during this awful, difficult period in your life. Maybe you'd rather hear someone say how much this sucks, how outrageous and unfair it is. Maybe you'd rather hear someone tell you that you don't have to be strong all the time. Or that it's definitely okay to curse fate and throw a tantrum or two. So here I am to tell you all that stuff and more, to let you know where I stand, which is right in your corner. There's no right way or wrong way at a time like this. However you work through this thing is immaterial to me. All I care about is that you ask for what you need, lean on those who love you, and try to trust me when I say that you'll come out the other side."
Jeannie Hund
While reading this card, I must have had some dust blown into my face, because my eyes were inexplicable watery...
...goodness knows that REAL men don't cry! (yeah right!)
Anyways, it was an unexpected message from a good friend who has helped my partner tremendously in keeping our business running smoothy during these tough times.
Scott
Friday, September 27, 2002 at 02:56 PM (CDT)
WE JUST GOT HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Zachary took his usual after-chemo nap, so he is feeling ok. We've hoping to be home for two weeks now. The next round is scheduled to begin on 10/14/02.
Today, we got back the results of the urine test that was taken on Monday when we started chemo. This was sort of a baseline test to help us monitor progress of these additional rounds of chemo without having to fly back to NYC every week. For those of you don't remember, NYC showed slight improvement on Zman's urine test two weeks ago, over the one taken two months ago. So, one would assume that a baseline test done at St. Mary's, would show slight improvement over the LAST one taken over a month ago. Sounds logical right? Sounds reasonable right? Sounds like a plan right? (Those of you that have followed my journal entries are waiting for the axe to fall, and fall hard!). Well, "The best laid plans of mice and men." as the saying goes........one of the two markers showed the expected slight improvement. The other one, unfortunately, got worse!
What does this mean? Who knows? Not me, thats for sure! We tried to watch Zman's diet the day before the urine was taken, but of course some of the items on the list made their way into his body. If you go by NYC standards, then the only no-no's are orange juice and vanilla, but I've seen the textbook list myself, and it goes much, much deeper than that. So, was this test indicative of anything? Once again, NO ONE SEEMS TO KNOW!
I guess I'm going to revert to my original stance on the urine test, which was, I don't trust it fully. Zman looks good. He feels good. (Other than being run down a little from this week of chemo.) So, I will take that for what it is worth ------ ALOT!
We push forward with at least one more round of this chemo, and within three weeks, I will have a better grasp on the availability of the NYC treatments. So, I will be able to determine whether or not we need to get right back to NYC, or whether we need to try another round or two of this chemo.
That is pretty much everything I know right now, so I will say goodnight. Thank you to Jeff Charlton for stopping by the Quantum House and spending some time with us. We are hoping to see more of Jeff and family over the next week or so. And, thank you again to the Mathis family for keeping us sane this week. We are looking forward to many more nights of games.....maybe we'll even let you win a few!
Scott
Thursday, September 26, 2002 at 12:43 PM (CDT)
FOUR DAYS DOWN, AND ONE TO GO!
Zachary is still doing well with the chemotherapy. He definatetly likes coming back to the Quantum House with us and not having to stay in the hospital all night. Who can blame him?
So far, he hasn't needed much in the way of medicine to get through the night. We're hoping that this trend continues and that he won't need the neupogen shots later next week. We're told that many of the children don't get super low counts from this chemo. His counts right now look good. His ANC (ability to fight infection) is about 700. This means that he is above the danger zone of 500, but still needs to be cautious in large crowds. (Especially around children) Chemo should be done tomorrow, and we may stay one extra night to do some things with our friends the Mathis's. They have been keeping us sane while we endure the additional chemo!
I received many emails and calls regarding my last journal entry. I think some folks thought maybe I went off the deep end. (That was months ago.....it's all smoke and mirrors baby.) Anyways, I didn't expect the outpouring of support for my venting, but I DO appreciate it! For the record, that journal entry was not in reference to one incident or one person, it has been building up for quite some time. I don't believe anyone has intentionally tried to hurt our feelings, I just believe that it is virtually impossible to understand the magnitude of this situation, without living it every day! Enough on that!
On the lighter side of things. We were looking for a place to have dinner the other night, and I gave Zman the option of choosing where he wanted to go. He was having some difficulties, so, I jokingly told him we could go to Rachael's, which is a local place that serves food, and has entertainment consisting of young women dancing around with most of their key clothing removed. (Use your imagination).
Anyways, I explained to Zman what this place was all about, and he got very quiet, thought deeply about it, and then said to us, "That's inexcusable" (How did he learn that word?) After we stopped laughing, we asked what was wrong with the place. His response was, "How can they be walking around naked serving the food?" "Good point" I said, "but I think the dancers are on a stage, and OTHER people are serving the food." Well, then he was ALL FOR IT! Great disappointment followed, when I informed him that you had to be 18 to get in. Oh well.
Scott
Monday, September 23, 2002 at 04:13 PM (CDT)
DAY 1: THE CHEMO HAS BEGUN!
Well, we've started yet another round of chemotherapy. Zachary seems to have tolerated it so far today, no complaints yet. The doctor and I have come up with a plan that has us keeping Immodium AD on hand at the Quantum House in case Zman gets diarrhea in the middle of the night. The way my stomach has been feeling today, I wouldn't be surprised if I'M the one downing a few teaspoons of the stuff! Oh well, must be sympathy pains or something. The hospital has worked out a pretty nice schedule for us, hopefully the pharmacy will stick up to their side of the bargain and have our medicine up on the floor for us after hydration. I'm sure any glitches in the system will find their way into my journal entries.
Speaking of glitches, there is an area of this illness that doesn't seem to be discussed too often in the open. We've had the discussion with other families that have children with cancer, and it seems to be a theme that is quite common, so being the sarcastic mentally frayed individual that I am, I figure I can get away with writing about it on here.......so here goes.
There are NO amount of camps, celebrity visits, trips, toys, parties, etc. that make having a child with cancer worth while!!!!! Please don't misunderstand that sentence. We are extremely appreciative for all of the wonderful experiences that we've had, but, we'd gladly trade them in for a healthy child. This may seem like a very logical statement that should go without saying, but we have encountered people that exude a feeling of jealousy over some of the experiences that Zman has had. What some people forget, or never appreciate is, that every night when we go to sleep, we lay down with the knowledge that our child is fighting for more life. Every morning when we wake up, the first thought through our minds is about our child and that fight. During the day, we are constantly bombarded with decisions that force us to focus on this insane situation.....so, when we are blessed with a camp outing, or a football game, or a toy for Zman, we maybe get a few moments where we don't feel like the world is caving in on us. Many people have said that you have to take things one day at a time, and focus on the positive, or don't let yourself get trapped in a cycle of dispair. All of that is great advice, but, please realize that there is NO switch in our heads that allows us to walk away from the reality of what we are facing. I believe that we are exsisting on a different level than we used to. Picture a piece of paper with a line dividing it in two, horizontally. Everything above the line is a positive experience (marriage, children, laughter, promotions, etc.) Everything below the line is a negative experience, (death of a relative, boss yells at you, pain, divorce, etc.) I think most people are able to stay on the line and live with the events that sometimes put them over and sometimes put them under. Now, picture another horizontal line that runs about three inches below the original line. THAT is where families like ours are surviving! The events that would normally put us over the top, only manage to bring us close to that "normal" line. The feeling is good, we really do enjoy the positive events, but you always know that you are there because of how sick your child is. And I think that it is important for everyone to understand this. THERE ARE NO AMOUNT OF SPECIAL EVENTS THAT WILL CURE OUR CHILD. But, they do make Zachary feel great! They do give him moments where he doesn't feel like a human pin cushion, or a permanent resident of a hospital, so we gladly take advantage of them! I don't know if any amount of words can adequately convey the sentiment that I am trying to portray here, but I do know that there are many families like us out there that have had to endure the same feeling that I have described above. I don't believe that it is done with malice, but with a lack of understanding. Approx. 8800 families each year in the USA will have a child diagnosed with cancer. Thank God that more of you don't have to live this nightmare....I wouldn't wish it on anyone!
Scott
Sunday, September 22, 2002 at 07:57 PM (CDT)
Welcome to chemoville. We are staying at the Quantum House this week. 561-494-0515....ask for us! The plan is to do this week's chemo as an outpatient, so Zman can stay with us at night at the Quantum House. Hopefully all will go well and we'll be able to follow through with this plan. He is really looking forward to being able to get away from the hospital at night!
Today was fun. We were given tickets to the Dolphins/Jets game by Connor Moran Children's Cancer Foundation of WPB. For those of you out of towners, they are a wonderful organization that provides many services and outings for families in our position. Zachary had never been to a football game, so he thought it was neat. We only made it to half-time because of the heat, but the good news is, we beat all of the traffic. After the game, we spent the evening with the Mathis family. We were able to kick back and relax, eat some pizza, and try to forget about what lies ahead. We had fun playing Who Wants to be a Millionare. I don't feel it's appropriate to talk about who won and who lost, but if anyone has a good investment strategy for the $80,000 dollars that I won, I'd love to hear about it! (I don't think the other players will be needing and such advice.)
Back to the real world! I can't recall any stage of my life where the unknown was so frightening. Entering this next round of chemo should be a walk in the park, compared to some of what we've been through, but I'm petrified! I guess my nerves are shot....trying to balance everything and keep us focused....I'm going to have to invest in some more smoke and mirrors to make it work!
Anyways, today was fun....Zachary enjoyed the football game with Ty-Michael, and playing with Mitchell later on...so I'll take that and run with it. All of you that are saying prayers for Zachary, thank you. If it's not asking too much, please include two of our dear friends, Robert and Cameron in those prayers. I'll work on keeping the page current while we're down here.
Scott
Thursday, September 19, 2002 at 12:36 PM (CDT)
********* WE HAVE A PLAN ***************
Everytime I type that, or say that, the doctors find a way to throw us for a loop. However, I will refrain from being cynical (yeah right) and try to stay focused on our new found plan.
Before I outline the plan, I would like to refer anyone who hasn't been following recent events, to read the previous journal entry. It pretty much sums up the technical aspects of where we are. (I always hated homework too...get over it!)
One other thing to keep in mind. Rebecca and I are trying to remain focused on buying as much quality time for Zachary, without sacrificing too much quality of life. This is at best, like swimming in a pool of mud while searching for the lucky penny you dropped into it. In other words, we are definately up to our ears in a very, very grey area of treatment. Alot of families that have found themselves in this situation, have stopped treatments and taken what time they could get. Other families, have traveled to the four corners (yes, I know the earth is round) of the earth trying every bizarre treatment they could find, only to lose their child thousands of miles away from home. We are somewhere in the middle. The doctors have made it very clear to us that:
"WE ARE WORKING TO BUY TIME. THERE IS NO CURRENT THERAPY THAT CAN GIVE US A CURE."
I know this may all seem confusing to alot of you. We speak of therapies, and treatments, levels of disease, and remission. What you have to keep in mind is, relapsed neuroblastoma patients have a very poor prognosis. Some of these children DO get several years of remission and quality time. This is what we're shooting for!
*********************** THE PLAN *********************
Monday morning we are supposed to return to St. Mary's to begin two rounds of chemotherapy. This chemotherapy should be much easier on Zman than the previous ones. This time, they are only giving him one of the two agents that helped us over the past two months reduce the disease amounts.
We SHOULD be able to do this chemo on an out-patient basis. That way, Zman can stay with us at the Quantum House, and then during the day, we will be at the hospital for several hours. The chemo should take about 4 or 5 hours with hydration and medicine. It is given over 5 days. We then have 2 weeks off, and then we will repeat the treatment. After the second round (approx. 6 weeks), we will probably go back to NYC to reevaluate the progress and see if we beat the odds and made it into the treatment program that we've been working towards. If not, we will enter the alternate program that is using the same drug, along with a new drug that is showing promise in tests. If THAT program isn't open yet, then we can return home and continue to do the chemotherapy as long as Zman is still showing a response to the drug. There is also a "take at home" pill that is somewhat new, that we are reserving as an option for down the road. Several children like Zman have enjoyed 12, 18, & even 24 months of remission on this pill.
Keep in mind. Remission for children in Zachary's position doesn't mean they are cured. It means the disease is temporarily stable, and may stay that way for several years, several months, or just several weeks. There is NO crystal ball for this disease.
Scott
Tuesday, September 17, 2002 at 05:30 PM (CDT)
I'm sure it will come as a big surprise to many of you that we have used a therapist on and off over the past two years. I know, I know, your shocked that the "amazing Finestones" can't handle everything on their own and sometimes seek outside assistance. Well, it's true. She has been very helpful in keeping Rebecca, Zachary and I grounded in the real world. I had an interesting session today in fact. We were discussing the process of passing along news about Zman and how it sometimes is difficult to properly convey the news without getting super technical, especially with our friends and family members that haven't had the exposure to the medical terminology like we've had. One of the frustrastions that I expressed was how news can be misleading.....like our last bit of news, improvement is always good, but we are no where near being out of the woods, and I hate to have to burst bubbles after giving good news. The harsh reality of our situation is this, and I'll try not to be as technical as I usually am so that everyone can appreciate where we are.
1). We are NOT currently eligible for the treatment program in NYC that we were trying to get on. They feel that even with the improvement, Zman still has too much disease to benefit from that protocol.
2). Because Zman showed improvement with the last two rounds of chemo, they feel that continuing with 1 of the two chemos that was being used, (1 was new to Zman and 1 has been used many, many times,) would give us a SMALL chance of reducing the disease levels enough to THEN be eligible for that protocol. (Approx. time would be 6 weeks, 1 week on chemo, two weeks off. Then repeat)
3). Zachary is immediately eligible for a DIFFERENT treatment protocol in NYC that requires 2 weeks on, and two weeks off. This program has only been used on about 12 children....all "last ditch efforts" to gain time. 2 of those children are still enjoying quality time after a year of treatment. This program has very few side effects, but requires huge amounts of travel time back and forth to NYC.
4). There is a NEW protocol that is similar to the one we wanted to be on that is currently not OPEN yet, (meaning it has govt. approval, but it hasn't started yet.) This treatment uses two drugs, one is the monoclonal antibody that were shooting for, and the other is an extract of barley that has never been tested on humans before. Unfortunately, at this stage, alot of what is being offered is last ditch type treatments for children that have failed all conventional treatments.
Our Doctor here in Florida is going to speak with our NYC doctor and come up with a plan that will hopefully give us as much quality time with Zachary, without putting him through too much discomfort. The additional chemo sounds like it will be the least tramatic path to take for at least the next 6 weeks. We could stay as a family at the Quantum House (like a Ronald MacDonald House) in WPB and do the chemo on an outpatient basis. That way, we would all be together at night, (usually, one of us sleeps at Quantum and one stays in the hospital with Zman.) This one drug by itselt should not be overly harsh on Zman's system. He may not even get fevers or need much in the way of blood products.
If, after two rounds he is showing significant improvement in the urine test (don't get me started again on this, I may have to open a can of whoop ass.), then we would return to NYC with the hope that our "small" chance came through, and we get onto the protocol that we wanted. If not, then we have to decide whether or not to put him on the new, "never been tried on human" protocol.
I hope I didn't confuse all of you or get too technical. Basically, we're grabbing at straws right about now.
Scott
Sunday, September 15, 2002 at 02:13 PM (CDT)
THANK YOU ALL FOR PLAYING THE WAITING GAME!
And guess what....no calls on my cell phone all weekend! I'm very proud of all of you! Ok, so you've waited long enough. The doctor's office from NYC called on Friday and said the following:
1). The MIBG Scan was significantly improved!
2). The CAT scan and bone scan show NO new disease!
3). The urine markers are slightly improved!
What does it all mean? Well, the doctor emailed us asking for more details from the last two rounds of chemo. They are trying to determine whether Zman can go straight into the monoclonal antibody program in NYC, or whether to give him some more rounds of chemo down at St. Mary's in West Palm beach. Zman's case should be reviewed this Tue. or Wed. and we should receive a call by Thur. letting us know what the game plan is.
There it is folks, the best news was the improvement in the MIBG scan. That test shows the activity level of the cancer cells, so at the least, we've probably bought some more time! And time means everything to us!
I'll probably wait until I hear from the doctor later this week, because I don't expect anything new to develop between now and then. Thank you all for your continued prayers and thoughts.
Scott
Thursday, September 12, 2002 at 04:45 PM (CDT)
WE'RE HOME!
Jetblue Airlines does a great job, they got us from NYC to WBP in 2 hours and 15 minutes....no problems! My dad always says, "any flight you can walk away from...is a good flight." I agree.
When we first got out of the airport in NYC, there was a guy in a Lincoln Towncar trying to pick up a fare. (Pretty common thing in NYC.) Anyways, his rate was the same as a cab, but his car was clean...even had a drop down tv for Zman to watch, so we took a chance and several near misses later, we made it too the Ronald McDonald House...anyways, we got his cell phone number. He seemed real nice and was asking alot of questions about Zman...seemed concerned for us. He tried refusing the tip, but I insisted. We told him we'd need a ride on the 12th (today) to get back to JFK, and he had us call him Wed. night to confirm. He ended up being about 30 minutes late today, traffic from the President down at the U.N. building. But I had left plenty of time, so we still got to JFK about 2 hours early.
We've come to the conclusion that no matter who drives us, it will be a hair raising experience. (This is saying alot since the two Finestone men don't have any hair to speak of.) Zafar (our driver and new found friend) loves to talk while driving. This wouldn't be a bad thing, except, he likes to look in the rear view mirror while talking. Of course, everytime he looks in the mirrow, we swerve out of our lane and have a near miss. I don't know if he thinks it's rude to talk without looking at you in the face? But I would think it is even more inappropriate to deliver your customers in little pieces! Whatever. It's New York! You almost get used to it.......almost. Somehow, we managed to avoid having to use a cab even once this trip. The house provided a bus to the Yankee game on Sunday, and to the Central Park Zoo on Tuesday. We mostly walked alot and found some nice new places to eat.
***** FOR THOSE OF YOU THAT CAME TO THIS PAGE TODAY LOOKING FOR INFORMATION ABOUT ZMAN'S TESTING, I TOLD ALL OF YOU YESTERDAY, AND I'LL REPEAT IT TODAY. WE WON'T KNOW ANYTHING UNTIL TOMORROW AT THE EARLIEST. AND SEEING AS WE'RE GOING AWAY FOR THE WEEKEND AT AROUND 1PM AND WON'T HAVE ACCESS TO A COMPUTER ALL WEEKEND.....YOU ALL GET TO PLAY THE WAITING GAME FOR ONCE. I KNOW IT SUCKS, BUT YOU CAN'T FIGHT CITY HALL.*****
So, anyways, back to my fluff journal entry. Zman is very happy to be home..even if it is only for one night. Oh, there was one interesting thing on the airplane trip back down. There were probably 8 or 9 elderly folks that required wheelchair assistance to board the plane in NYC. This of course allowed them to sit up front in the first 4 rows, and of course some of them got to board early. During the flight down we must have passed through some magical portal that somehow rejuvenated their frail bodies. Because, once the plane stopped at the gate, the flight attendents announced that wheelchair passengers would be taken off the plane AFTER everyone else exited. Well, I never saw some many elderly people doing cartwheels and flips to jockey for position at the door. At least 5 of them were amoung the first passengers to leave. Walking without assistance. Hallelujah! Praise the Lord! It's a miracle! Or maybe not. You make the call.
Scott
Wednesday, September 11, 2002 at 12:34 PM (CDT)
THREE DOWN AND ONE TO GO! The only test that remains is the CAT scan later this afternoon. Zman is holding up well, he has tolerated all of the testing so far.
We just left the hospital, and we got to meet two of the other doctors that run the neuroblastoma program for Sloan Kettering. I would say, that if before this meeting our vision of what lies ahead was comparable to dirty water, now it is more like pea soup! We really thought we had a plan that had been presented to us two months ago.... we thought the guidelines were written in stone....evidentily, someone lost the stone.
Now, we are being told that the protocol for the treatment regimine that we want to get Zman on requires that there be "almost no" or "no" disease present. The doctor today told us that it was "unlikely" that two rounds of irinitecan/cytoxin (the chemo we just finished) would reverse the disease enough to be eligible for this protocol. The head of the department was there today, he said that it was more likely that we would do MORE CHEMO! They would probably be recommending more irinitecan, without the cytoxin. (They feel he has had enough of that one chemo already.) No final decision will be made until they meet later today and discuss Zman's case. Also, they need the results of all of this testing to know which plan will work.
There is another new protocol that was designed for children with progressive disease. It uses the same monoclonal antibodies that the other study uses, but it also uses a new drug that is extracted from barley. This new study is Phase I, which means insurance will be a nightmare, at best.
There is still a small chance that Zman will have responded better than they anticipated, but the doctor today was not hopeful that we would be where we NEED to be, without more chemo. At this point, I keep looking up in the air to watch out for falling pieces of the huge balloon that popped about an hour ago. I know most of you are reading this and thinking, "stay positive", "it's still possible that the news will be good on Friday."
I'm trying!
I really am!
You have to understand that we've put enormous amounts of energy into the plans that were presented to us two months ago. Even knowing that we might not be able to offer Zman any other treatments was factored into our minds. Dealing with the unknown is torture. You pick and choose your battles and try to plan as best you can. But, when the map they've given you says, "go down the path and turn when you see the new path that is marked by the tall tree.", and when you get there, it's nothing but redwoods as far as the eye can see......well.....you get frustrated.
I guess I'm done for today. We fly home tomorrow, and Friday we are going with our friends the Mathis's to a cancer camp in Tampa for the weekend. I probably won't hear from the doctor until we're on the road on Friday, so don't expect any news here until Sunday when we get home. I'm sorry about the wait/torture of not knowing. Believe me, it sucks! Those of you that have my cell phone number and want to risk hearing me use four letter words, feel free to dial it anytime over the weekend.
Scott
P.S. I would like to say a special thank you to the Chemo Angels that have been so kind to our family. Our good friends Audra and Tim signed us up with this group that "adopts" children going through chemotherapy. They have sent many, many cards, toys, games, notes, candies, etc. Zman absolutely loves getting the mail now, because he knows that almost every day, something will be there to surprise him! Mary, Cheryl and Diane, thank you! (if I missed someone...Rebecca will be sure to scold me.)
Tuesday, September 10, 2002 at 11:40 AM (CDT)
OK. FIRST THINGS FIRST....AGAIN.
***TEST UPDATE***TEST UPDATE***TEST UPDATE***
The results from yesterday's bone scan came back already. It was normal!!!!!!!!! Don't get too excited yet, it was also 'normal' two months ago when we first came here to NYC. This is good news, but it doesn't get us out of the woods yet. We need the bone marrow and MIBG to be good! I'll let everyone know when it's ok to breath again.
The bone marrow went pretty well.....we were delayed about 45 minutes waiting for the anesthesiologist (guy that knocks you out), and then when he DID show up, he had a hissy fit because there weren't any latex-free gloves in his size....he's allergic...didn't want him going into shock while Zman was trying to wake up from the "milk of amnesia", so we waited another 10 minutes while he ran to the O.R. to get a box of the ones he needed. No big deal.
Instead of walking to the hospital today, we took the bus that the Ronald McDonald House provides...there was another family leaving at 7:30am also, so we jumped on with them. I STILL don't get the driving routine here. We are literally 50 yards from the end of the block. Our driver got up to 120mph in those 50 yards, just so he could slam on the brakes. None of us was in a hurry, the clinic doesn't even get rolling until 8am, and it's only 5 blocks away! We must have changed lanes 19 times in those 5 blocks. If I ever move to this city (not in a million years) I'm going into the brake-pad industry.....these people must go through 100's of sets each year!
We head back to the hospital in an hour to get the injection for the scan that Zman will have in the morning. Then we are done for the day. The house is taking a group to the Central Park Zoo, so we signed up for that.
*****ADULT EYES ONLY******ADULT EYES ONLY*****
If you are easily offended by off-color humor, stop reading now and proceed directly to the bottom where it says, "Scott". If however, you want to read my lame urine joke, continue.....
This guys goes to his family doctor who he has used for years. When he arrives, the nurse asks for a urine sample. The man says, "I'm just here for my tennis elbow, I've been seeing the doctor for years, he's never asked for urine before." The nurse informs him that they have a new machine that can diagnose any illness from the urine...he doesn't believe it, but he humors her and gives the sample. The doctor enters his room about 15 minutes later and says, "I see your tennis elbow is acting up...take it easy for a month, and come back with a new urine sample." The guy thinks the nurse must have clued him in, but thanks the doctor and goes home. He tells his wife and family about the crazy office visit, and they decide to play a trick on the doctor. His wife pees in the cup, his daughter does, and his dog does. Then they get some oil from the floor of the garage, and finally, he masturbates into the cup...mixing it all up and storing it in the fridge. When he returns to the doctor, it takes them over an hour to get the results from the machine. The doctor enters his room and says, "Ok wise guy. Your daughter is pregnent, your wife has the clap, your dog has worms, you'd better change the oil in your car before you burn out the engine, AND, if you don't quit playing with yourself.....you're never going to get rid of that tennis elbow!"
Scott
Monday, September 09, 2002 at 02:32 PM (CDT)
OK...FIRST THINGS FIRST! BO, YOU KNOW WHO YOU ARE. THE COMPUTER ROOM NEVER OPENED HERE ON SUNDAY. SO, PLEASE, PLEASE ,PLEASE....PUT A GOOD WORD IN WITH "THE BOSS". I DID NOT SKIP AN UPDATE ON PURPOSE!
Ok....now down to business. The Yankee game was great. Very hot, so we moved to upper level shaded seats. We loved the Nathans (tm) hotdogs, cotton candy, popcorn, soda, lemon ice, etc. (I really did look high and low for a salad...nothing on the roof or floor....sorry.) The Ronald McDonald House had 50 tickets for the game, only 13 of us were interested/healthy enough to go. We gave the remaining tickets to some police officers outside of the stadium to give away. They thought we were bribing them and arrested all of us....just kidding. They gave them away to some families that were nearby. The stadium is amazing....lots of history in that ball club. We didn't catch any balls, but Rebecca DID get to see Jeter hit a home run, so it wasn't a total loss. The group got tired in the eight inning, so we headed out while the game was still tied....the Yankees ended up winning....and we beat the crowds.
[The only thing more boring than watching a baseball game...is reading about one online....sorry.]
Testing today was slow......we finished up around 2:30pm with the bone scan. We did get to see the doctor today, and he's promised to get us results of testing by Friday. (It's really too bad.....you all know how much I like waiting over the weekend for results......NOT.)
Tomorrow morning we have the bone marrow biopsies and aspirations, and then we get the injection for the MIBG scan in the afternoon....so hopefully it will be a good day.
They tried telling us today that we were on the schedule to get the marrow tested on Thursday (our travel home day), and I threatened to call and sic Bo and Diane on them....if we don't show up for Friday's departure to camp Good Times, I KNOW someone is going to get smacked around....and I don't want it to be me!!!!!!!!!!!! They fixed the schedule and squeezed us in for a morning procedure....so Zman doesn't have to be NPO (without food) for too long.
We're testing urine again! (Everyone who has been reading updates for the past two or three weeks just heard me give out a very heavy sigh.) I pretty much told the doctor that I don't believe in that particular test....he laughed and said that Zman should avoid vanilla flavoring and orange juice??????? I asked about the other 2,481 items on the list, and he giggled and responded that these two were the only ones he's worried about. What a shame, because Zman loves waking up every morning to a vanilla/orange juice shake! Oh well. The sacrifices we make. Anyways, the doctor claims that there are different WAYS to test the urine for VMA and HVA....(wink, wink).....like I believe that load of malarky. Hey, if he wants urine....WE'LL give him urine. (reminds me of a very funny joke.....a little risque......if enough of you beg me on the guestbook...maybe I'll add it to tomorrow's journal.)
No other news to report.....the cabbies haven't gotten ahold of us yet....we'll see what happens with that.
Scott
P.S. This part was added later in the evening after dinner. We were eating and discussing what Zman could have for dessert (urine worries again...great!)..anyways, we remembered what we had last night. ICE CREAM...cookies and cream..(vanilla based). Just a mere 14 hours before we started collecting urine! Hmmmmmmmm anyone want to bet the HVA will be elevated?
Saturday, September 07, 2002 at 03:25 PM (CDT)
(singing out of key) START SPREADING THE NEWS.....
Ok....we're in NYC!
The flight was great, we were on a brand new airplane (1 week old.) Every seat had a tv with 24 satelite channels, so Zman was happy.
We're all checked into the Ronald McDonald House, Room #401. While we were checking in, I noticed a clipboard on the counter that had a signup sheet for a bus ride to the Yankee game tomorrow. I asked how much the tickets were, and guess what? They're free! You just put your name on the sheet, the bus picks everyone up at 11:30am, and it's off to the stadium for a baseball game! They have a whole section reserved for the house.
Rebecca is excited, because she'll get to see her true love, Derek Jeter! Zman is excited, because he'll get to see a major league baseball game at Yankee Stadium! And, I'm excited, because I'll take any excuse to eat junk food! NY hotdogs....here I come! Hey, it's not my fault they don't sell salads in the stadium....what choice did I have? (snicker)
Well, we've been here for 2 whole hours and I've already updated the page.....soooooooooooooo, if anyone was watching to see if I would follow through, (no names mentioned Diane), then they should be happy that I haven't dropped the ball yet!
Keep signing the guestbook.....we love getting the messages!
Scott
Friday, September 06, 2002 at 06:53 PM (CDT)
T-minus 15.5 hours until we depart from WPB and head to NYC!
I don't know about the rest of you....but I'm mucho nervouso, as my old spanish teacher would say. I know that I should be getting used to the ups and downs and lefts and rights of this ordeal, but call me nuts......I just don't recall going through any parenting classes that prepared me for the last 2.5 years.
We're all packed, toys, clothing, toys, medicines, toys, books, toys, paperwork and toys. Heh! I'm the boss here, and if I say no more toys in the suitcase, then that means NO MORE TOYS! (Unless of course Zman packs some more.)
Anyways, we're ready.....physically.......mentally - the jury is still out on that one. I received a veiled threat today from a dear friend.....she warned me through Rebecca that If I didn't update the webpage every day we're in NYC, heads would roll! Now, I'm not one to tattletale or name names.....but, you know who you are Diane! :) (oops....keyboard won't let me edit...sorry.) :)
Seriously though, we will have access to the computer room at the Ronald McDonald House in NYC, so we will make every effort to update the page daily.
Thank you to all of our family and friends that have gotten this far....regardless of what the future holds for us, all of you deserve medals for giving us a shoulder to cry on, and keeping us focused on the here and now! Many of you will remember that in February of this year, (7 months ago) we were advised by one of Zman's transplant doctors to stop treatment and take the month or so of time that we had with our son. These past 7 months have been wonderful. Even though we've spent 10 weeks of it in St. Mary's, we've met new friends, seen family, had parties, gone on trips, sent Zman to camp, seen NYC, and pretty much had an amazing amount of quality time! Rebecca and I owe alot of this blessing to our family and friends!
Keep us in your thoughts and prayers.
Scott
Monday, September 02, 2002 at 02:59 PM (CDT)
***** 5 DAYS AND COUNTING *****
We leave for NYC on Saturday 9/7/02. Zachary's testing begins on 9/9 and goes thru 9/11. We are scheduled to return home on 9/12/02. By the end of that week (9/13) we should have results.
Rebecca and I are definately feeling the pressure. Every cough and ache is taking it's toll on us. Zachary had a mild amount of joint (mainly ankle) pain this weekend, but we were still on the neupogen up until Sunday, and it has a known side-effect of bone pain. This weekend was wonderful. My brother Ross, his wife Angela, and their two children Hannah and Luke came down from Pittsburgh for four days. We stayed with them up in Vero Beach at my folks place and had a great time! Zachary got to play with his cousins, swim, and just be a kid. Weekends like that almost allow you to forget what lies ahead....almost.
I've done alot of reminiscing lately, partly because of the rapidly approaching NYC trip, and partly from explaining to friends and family what the future has in store for us. We don't have all of the answers yet, but there seems to be only two paths that have been presented as possibilities. One will involve months and months of return trips to NYC so Zachary can receive special treatments designed to attach the cancer cells. There are of course no guarantees that the treatment will be successful. The other possibility, well, I'm not really up to going down that road right now. The daily torture of not knowing has been brutal. We have spent over ten weeks in the hospital since February of this year. And, being home is not always a picnic. The number of nights that I've gotten out of bed to check and make sure he is still breathing, are innumerable. It's not that he has been so sick that there should be a reason for concern, it's just that a sound peaceful sleep for me is a thing of the past.
One of these days, I've promised myself that I'll write a book (probably a short one) about our experiences over the past two and a half years. I am constantly amazed at how common the experiences are for the other families that we've grown close to during this time. Being a parent of a child with cancer has forever changed us....for better or worse. We try to remain focused, we try to cope with each and every obstacle that is thrown at us, we try to remain positive for our child and our spouse, and we try to retain what little remains of our sanity.
Scott
Wednesday, August 28, 2002 at 07:07 PM (CDT)
Ok, close your eyes....not literally you goof ball...you won't be able to read this. I just want you to get a clear mental picture of what Zman treated me to this evening.
It all started with a long, long day on the road.....I know, I know, violins are playing everywhere for me. Ok, so I'll fast forward to after dinner. I'm laying on my bed, trying to relax. I KNOW Zman had a good day, because I've got a Nextel phone, so I get updates whenever I need my Zman fix! So, back to the relaxing on the bed. I'm zoning out....sort of watching tv...there was some special on neuroblastoma on the Discovery channel, (we haven't lived the nightmare enough, we've got to torture ourselves with as much misery as possible....just to keep our tear ducts flowing.) Anyways, where was I? Oh yeah, I'm laying on the bed, and I hear this little voice from the other room......
.....it's Zman, he comes running into our room, all proud of something......walks up to the bed and throws a wad of folded up toiled paper onto the comforter that I'm laying on and says, "look inside, but don't REACH inside." So, I'm figuring he's killed a bug or spider or something. He knows I hate spiders. (I realize that this chink in my armor is a great disappointment to all of my fans out there, but yes, spiders and bees are my kryptonite.)
Anyways, I open this toilet paper expecting to find a bug, and what do I find, staring back at me??????????? A big blood stain!!!!!!!!!!!!!!!!!!!!!!!!! The problem with this stain was, there was NO BUG INSIDE!
Zman, being the careful cancer patient he is, had checked the paper after wiping his behind....he saw the blood, and being the platelet conscience lad he is, figured he would parade the results onto my bed. Now, I know my immediate parental response SHOULD have been to show concern for the possibility that his platelets might be a tad low, but I've got to be honest with all of you. All I could think was..
GET THAT USED BLOODY BUTT WIPED TOILET PAPER OFF OF MY BED!
I realize that my image of being a sensitive caring father has just been thrown out of a window, landed in a mud puddle, run over by a car, and then lit on fire and burned beyond recognition....but COME ON......USED TOILET PAPER...
PLEEEEEEEEEEEEEAAAAAAAAAAAAAAAAAAAAASSSSSSSSSSEEEEEE!.
Of course, once I regained my senses, I donned gloves and examined his behind....resisting the urge to smack him for his efforts. I believe it was an anomaly....he has no petechiae, and we recheck counts tomorrow morning, so I'm sure he's alright....I however, may be scarred for life.
Scott
Tuesday, August 27, 2002 at 07:51 AM (CDT)
Good morning to all of you early risers.
We checked Zman's counts yesterday and they are coming up nicely. His ANC is over 1700 now which means he can fight off those nasty bugs that are always floating around. (All of you sickies that have been holding your breath, thank you....you can now breath again!)
Zachary is excited to have two of his cousins coming into town on Thursday. My younger brother Ross is flying in with his wife Angela and their two children, Hannah and Luke. Luke is almost one year old and we haven't met him yet, so we're all excited about seeing them.
We have our reservations for NYC, we'll be leaving on 9/7 and returning on 9/12. Upon receiving confirmation that we would be going back to the big apple, we were contacted by the public relations spokesperson for the NYC cab union. She wanted me to assure her that I would refrain from using my old tactic of hailing a cab, and settle for the time honored, "waving politely." [I guess punching my left fist into the crease of my right elbow, while sticking my right middle finger up in the air, is no longer considered a "normal" means of communicating with cab drivers.] Thats progress for you!
Scott
Saturday, August 24, 2002 at 05:42 PM (CDT)
The moon is full, the planets have aligned, pigs can fly, and, most importantly, we got out of the hospital earlier than expected!
I know, I know, you're all thinking, Scott is such a pessimist....always doubting that things will work out in his family's favor once in awhile. Well, maybe I DO look at the dark side of things every so often. I can't help but remember that routine that the comedian Brenner used to do about the divorce rate in California. He would say that 75% of couples in CA were getting divorced...and he couldn't understand why people out there were still getting married. And then, he would ask the audience, "If 3 out of 4 mornings, you openned your door, and someone threw a bucket of crap in your face......would YOU open your door in the morning?" So, maybe I'm just looking out for the next bucket that might come flying our way.
Back to the pigs flying....we ARE HOME! Zman's counts weren't quite up to the standards that are usually used to discharge patients, but as I held Dr. Gowda down on the floor, and Zman and Rebecca took turns slapping him around a little bit......he slowly came around to OUR train of thought that had us getting out today.
(Actually, his counts have been on the upswing over the last two days, and it was Dr. Gowda that suggested we go home and check counts again on Monday.....but it sounded so brave of us...taking on the system. Yeah right!)
The plan for New York has changed on us. Originally we were scheduled to repeat the tests on 9/9 - 9/11, and have an answer by 9/13 as to whether we would start the first two weeks of treatments on 9/16. (keeping us in NYC for 3 straight weeks.) The doctor has decided that we will keep the testing days unchanged, however, he will let us come home on Thursday 9/12 for a week or two, and have us return if the testing if favorable. (I have my own theory on this, but no one believes me that the cab drivers union got together and threatened to strike if they were subjected to my wrath for three weeks in a row.)
I will update the page if anything exciting happens, otherwise, it may be Tue. or Wed. before I get back to it.
***********SPECIAL NOTE**************
WELCOME HOME MATHIS FAMILY.....ITS GOOD TO HAVE YOU BACK. ONE DOWN AND TWO TO GO (CHARLTONS AND JORGENSENS).
Scott
Thursday, August 22, 2002 at 05:06 PM (CDT)
Rumor has it that we've got an ANC of 60! For those of you that slept through my "Beginners Course to Blood Counts" several days ago.....shame on you! But, having an ANC above zero is a start. Anything over 500 means that Zman has a fighting chance to fend off nasty bugs, and when it goes over 1500.....we generally party in the streets!
Zachary has not had a fever for 24 hours now, so if this trend continues, tomorrow he will be allowed out of his room. [LOCK UP YOUR DAUGHTERS....ZMAN WILL BE PROWLING THE HALLS]
Today we had an adventure! Zachary was getting platelets (blood products for you flunkies), and about halfway through the infusion, he threw up...I got nervous, because he hasn't gotten sick since we arrived on Sunday, so I immediately beeped the nurse. She arrived quickly after hearing my voice over the speaker system, and together we noticed that he was breaking out in hives. (Blood reaction). Alot of the kids get these, and once it happens, they always pre-treat them with Benedryl. Zman has never had a reaction to a blood product before. The nurse immediately gave him a whopping dose of Benedryl and a steroid. Within 5 minutes he was out cold, and within 20 minutes the hives were gone. I'm glad his breathing wasn't affected, the nurse had some epinephrine on hand just in case. She never felt that he was in danger, but it was very unnerving to see these bumps popping up all over his neck, cheeks, chest, arm pits, sides, chin...etc. All in all, my recommendation for everyone is; A). Don't get cancer. B). If you get cancer, get rid of it quickly. C). If you can't get rid of it quickly, take your time, but don't have complications while treating it. D). If you're going to have complications, you're obviously a difficult person to deal with, so you'll be ignoring this sage advice anyways! BUT, try not to have adverse reactions to drugs and blood products, it just messes up everyone's day. (like he had a choice.)
The good news is that he slept for 3 hours from the Benedryl, only waking up once to relieve himself of the 3.5 gallons of pee that he had accumulated while resting. (I think I'll take up juggling urinals as a hobby after we get out, I'm getting quite adept at it.)
If the ANC trend continues, we might get out over the weekend or early next week, I'll keep everyone informed.
Wednesday, August 21, 2002 at 12:42 PM (CDT)
Sorry for not updating this yesterday.....even I get lazy!
Zachary is having lots of ups and downs right now. His chest and back have been hurting him quite a bit. They have been giving him Morphine to keep him comfortable. The fever doesn't seem to want to just go away, so tomorrow, if it is still present, the infectious disease doctor will be called in.................again! My last encounter with this person did not go smoothly. This time however, I have lots of ammunition (not literally) on my side, Dr. Gowda has stated that he will not allow anyone to give Zman the medicine that we want to avoid.
The highlight of Zman's day/week/month came today in the form of a guestbook entry. One of his chemo angels asked Zman who his favorite sports stars were, they try to arrange to have one of them send a message to the guestbook. Zman's number one choice was, Mario Lemieux.. and sure enough, he sent a message on Wednesday! If you read the guestbook, it's the second newest entry on Wednesday. I've already responded to the generous offer they made, and hopefully we'll be in town and be healthy enough to take advantage of it.
The reinforcements are arriving today. My parents are coming down from Vero Beach to spend two days with us. They will be helping us will taking care of Zachary and we are very excited to have the company. Rebecca and I are hoping to go to Connor Moran's Parent's Night Out tonight with some of the other parents. It won't be the same without the Charlton's, Mathis's and Jorgensen's there, but we will raise a glass in their honor and look forward to when we can all get together and swap stories of how we all beat the cancer!!!!!!!!!!!!!!
Scott
Monday, August 19, 2002 at 02:51 PM (CDT)
WELCOME TO CHEMISTRY 101 AND ANATOMY 101!
***** IF YOU DIDN’T SIGN UP FOR EITHER OF THESE COURSES, PLEASE EXIT THE ROOM AND CHECK WITH YOUR GUIDANCE COUNSELOR. *******
Well, for those of you who actually read these ramblings of mine, you know that when we retested Zman’s urine, it came back with higher levels of cancer activity AFTER getting chemo. We were/are disturbed by this, but we remain hopeful that the second test was not accurate. Here is what I learned today:
The VMA and HVA are part of the catecholamines which are measured in the urine. Elevated urine levels occur as follows:
A. High levels found in pheochromocytoma
B. Slight to moderate elevations in.
1). Neuroblastomas
2). Ganglioneuromas
3). Ganlioblastomas
4). Carcinoid tumors (some cases)
Interfering Factors (THIS IS WHERE IT GETS INTERESTING)
1). Hypoglycemia (Test should not be given while patient is NPO.)
2). Many foods, such as the following can elevate the levels:
Tea, Coffee, Cocoa, Vanilla, Fruit, Fruit Juice,
Chocolate, Cheese Flavoring, Cider Vinegar, Gelatin Foods, Salad Dressing, Soda, Jelly and Jam, Candy & Mints,
Cough Drops, Chewing Gum, Foods w/ artificial flavoring or coloring, Licorice.
Now, of course this list contains VERY exotic foods that aren’t normally found in North America, so naturally, no one ever warned us to avoid these items for the recommended two days prior to testing and the day of testing. Because, ingesting one or more of the rare and bizarre foods listed could artificially elevate the catecholamine levels and scare us into believing that Zman’s cancer is growing and progressing through the chemo treatment that we’re torturing him with.
Thank goodness the items on the previous list are so strange and foreign to our diet that there would be NOOOOOO chance of Zman ever eating any of them….especially the soda, candy, jelly, gelatin foods, chocolate, or artificial flavorings……no, not those!!!!!
The bottom line folks is: WE HAVE NO WAY OF KNOWING AT THIS TIME WHETHER OR NOT HE DISEASE IS RESPONDING FAVORABLY TO THE CHEMO. It’s possible the levels came back elevated because the disease is growing, and it’s possible that one of these exotic foods inexplicably found it’s way into an 8 year olds diet.
I now refuse to retest his urine again…..we’re scheduled to be in NYC on 9/9….we’ll know by the end of that week where we stand!
Today Zman got his blood and platelets, they spend most of the night trying to control the 102.5 fever that wouldn’t go away. He is getting Morphine as I type this for the pain from sores in his digestive tract that are causing severe pain in his chest and back. Hopefully the Morphine will keep him comfortable until his counts return…..in about a week!
Scott
Sunday, August 18, 2002 at 09:23 PM (CDT)
We're baaaaaaaaaack!
Zachary flirted with a temperature of 100 all weekend, (the magic number is anything over 100.5). His energy has been good, and his spirits have been fine. I've been worried about his counts, because I knew they were dropping and we had no way of checking them over the weekend.
His temp hit 100.6 at around 3pm, so we made the call and drove down to St. Mary's. His temp was up to 101.3 and his blood counts were quite low. He needs blood and platelets. They're now trying to drop the temp with tylenol so they can give him blood, the first attemp failed. (They need the temp down because they use a fever as an indicator for a bad reaction while giving blood.)
I'm expecting his ANC to show up by Wed. or Thur....we'll see what happens. He feels pretty good, so we've at least got that! We're in room 2514 for any brave, healthy soles that want to venture down for a visit. I'm guessing we'll be here to at least Friday....as long as no infections show up.
Thank you for all of the messages on our board, Zman loves them! Please keep our special friends in you're prayers, Robert at St. Jude's, and Mitchell and Cameron at Duke. We miss them dearly and pray for a swift and healthy return by everyone.
Scott
Friday, August 16, 2002 at 07:01 PM (CDT)
Hello, it is Friday. Zachary's ANC is now 0. His RBC and platelets are ok for now, but we are definately in the danger zone for a fever. If doesn't happen tonight, It will probably be tomorrow or Sunday.
Zachary has only had two minor episodes of diarrhea, and one dose of Immodium seems to have gotten that under control. He is having alot of discomfort in his chest when eating and drinking. This is probably the onset of mucusitis. We're treating that with Maalox until we get to the hospital where they've got other magic potions to help us.
Zachary has been getting more and more agitated all week. He knows that we're on the brink of returning to the hospital with a fever, and he's not at all pleased. (Who can blame him?)
Rebecca has been showing signs of a return of her lupus, so she saw her doctor on Wednesday. He confirmed that she is indeed having a flair-up, and he increased her dose of Prednisone. So, any of you that need your car washed, house painted, floors retiled, or even a stadium built in your back yard, give her a call....she's got the energy to do it!
Hopefully the new dose of steroids will knock the lupus on it's ass and help keep her away from a full blown problem requiring a hospital visit.
I keep expecting Alan Funt to pop out of one of our closets and yell, "you're on Candid Camera." Then, I'll know that all of this is just a cruel hoax (trying typing those two words quickly 5 times without a typo.)
Ok...enough is enough....you've seen my ramblings for tonight.....I'll update this weekend so everyone knows where we are.
Scott
Tuesday, August 13, 2002 at 05:09 PM (CDT)
*********** CHECK OUT PHOTO #3 ***************
We have been home since Sunday afternoon. Zachary is still eating well and in general he feels ok. He has had a little bit of ankle pain, but it doesn't last long. Hopefully this is just from having been laying in bed at the hosptial for a week.
We had his counts checked this morning. His blood levels are ok, but dropping. I'd expect that he will get a fever no later than Friday. His spirits have improved since we got home. He's got his OWN PS2 and tv here to use and abuse.
We recheck counts Friday morning, so unless he gets a fever before then, we will be enjoying some time at home. We are still waiting for NYC to get back to us to explain their take on the urine test results that are still showing disease activity. Diet can affect these tests, so it's possible that the numbers aren't as bad as they seem. We're holding our breath!
I will try to update the page in a few days.....mostly I'm trying to enjoy being home!
Scott
Saturday, August 10, 2002 at 05:22 PM (CDT)
************* CHECK OUT PHOTO #3 ************
Alls quiet on the southern front. Weekends are usually pretty quiet around here. They had a few admissions late last night, but other than that, the floor has been quiet. Zachary is still making the most of his Marinol side effects. We're considering entering him in the annual Nathan's Hot Dog eating contest. I wonder if they drug test the contestants.
We're still scheduled to get released tomorrow around 1pm, so if that happens, we'll be home by 2pm. Silly Grandma and Grandpa are back in Florida, and they will be coming down from Vero to see us tomorrow afternoon. We're all looking forward to seeing them!
I called Vegas a little while ago to get the line on which day we'll return with a fever. Tue. & Wed. are too early, those days are both at 20-1....a risky bet, but if it happens, you cash in big time. Thur. is still a tad early, but the odds makers aren't going out on a limb, the odds are 5-1. Fri. remains the favorite with 2-1, and then Sat. follows with 3-1. Put your bets in early and lock in some good numbers....they may change things later in the week.
To all of the parents out there that have children in a similar position as Zman, you know what kind of torture the waiting game can be. For everyone else, family and friends that have supported us throughout this ordeal, I can only say that the pressure is on us. We have one month before we are scheduled to return to NYC where they plan to repeat the previous testing from late June, to see if we've stopped or reversed the progression of this disease. If we haven't, then we are running out of time and options. The NYC doctor said that they 'may' have a treatment plan if the disease is still progressive. That scenario leaves us far from home with a very sick child.. not an option that we want to think about. If we have indeed stopped or reversed the progression of the disease, then we embark on a new adventure full of painful treatments and several months of back and forth trips to NYC...all with no promises. In the mean time, we get to wait. We have very little hope of knowing anything before returning to NYC, unless of course, Zachary starts to experience symptoms of the disease. That leaves us jumping out of our skin every time he has an ache or pain.
So, this is the reality that we go through as parents of a child fighting a life threatening disease. Advice-givers will tell us to take one day at a time, or to focus on the moment. Both very good ideas in principle, but not always easily executed when faced with staggering odds and unthinkable outcomes!
Rebecca, Zachary and I have been truly blessed with loving family and wonderful supportive friends throughout this saga. If you don't hear a "thank you" from us every day, it's not from a lack of appreciation for your efforts! We are very grateful for the family and friends that we have.
Scott
Friday, August 09, 2002 at 07:45 PM (CDT)
*********CHECK OUT PHOTO #3*************
ROSES HAVE REDS,
AND VIOLETS HAVE BLUES,
ZMAN IS MY HERO,
AND MARINOL RULES!
Thank goodness for Marinol. Zman is still eating much better than he ever has on chemo. His only rough time today came after a bathroom deposit, he had some belly pain that was probably gas. After 3 days of torturing the staff with a whoopy cushion, a higher authority decided to give him the power to pass gas without faking it.
We're now done with the heavy hitting Cytoxin, so today, tomorrow and Sunday, we only get the Irinitecan. The major side effect that we're looking for now is diarrhea. Oh joy!
I knew I should have bought stock in that hazmat suit mfg. company. Hindsight is 20/20.
If we're able to stick to the plan, we will be home on Sunday by dinner time!
For all of you parents out there with daughters between the ages of 7 and 17, Zman's personality is now powered by Marinol, HE'S GOT FLIRT, and he's not afraid to use it!
Thursday, August 08, 2002 at 04:23 PM (CDT)
If this was jeopardy, the answer would be, "What is Marinol?" The question would be: "The drug that would keep Zman eating regular food in large quanities, and would enchance his personality so he is no longer shy around girls!"
We have a social butterfly on our hands....and we're not complaining.
Check out the new photo (#3) I'm sure this will be useful for future embarassing moments for Zman.
Scott
Wednesday, August 07, 2002 at 09:55 PM (CDT)
Mark you calendars everyone! Today, Zman joined the elite ranks of a small group of young chemo patients around the country reaping the benefits of Marinol!
I know what you're thinking.....HE'S ONLY 8 YEARS OLD MAN...ARE YOU NUTS LETTING THEM GIVE THAT DRUG TO YOUR CHILD? (FOR THOSE OF YOU WONDERING, SOME FOLKS SMOKE THIS DRUG IN FUNNY LOOKING CIGARETTES, OR OUT OF A BONG OR PIPE.) No more clues, sorry!
Well, we were nervous that he would feel funny, but, other than a severe case of the munchies, he's been normal! Actually, I think it loosened him up a bit...he actually played with one of the girls on the floor today...he usually is shy around them.
So, here we are trying to figure out how we're going to keep up with his appetite....a VERY good problem to have indeed! Hopefully the drug will keep having this effect into the coming days when the Cytoxin will hit him the hardest....time will tell.
Zman does have occassional access to the computer, so if anyone out there in internetland is surfing the web, and happens to come across someone called Zman, Zmeister, Zdude, or any similar handle, selling pills on Ebay, PLEASE LET US KNOW IMMEDIATELY.....we will not allow that sort of activity! (Without getting our fair cut, of course.)
We're in room #2514....561-844-6300. Stay in touch!
Scott
Monday, August 05, 2002 at 10:17 PM (CDT)
It was the best of times.....it was the worst of times.
Here we are at 11:24pm Monday night. The call came at around 4:30pm from Dr. Gowda. He heard back from Dr. Kushner in NYC with the news that we are to be admitted tomorrow after lunch to begin hydration for round two of chemo which will begin on Wednesday! Evidently, they feel the bone marrow has recovered (based on the 325,000 platelets), and Zman will be ok even though the ANC (see previous journal entry for explanation of ANC) is only 500.
The major concern going into heavy hitting chemo like this, is the bodies ability to recover and start making WBC, RBC and platelets. It took Zman an extra two weeks (compared to the previous protocol) to recover. We will be in the hospital until at least Sunday afternoon, and we fully expect to be home for no more than 5 days before returning with a fever. His WBC will get knocked down to zero for about a week, so it is virtually impossible to avoid a fever.
So, the WAITING GAME is over....we are entering round 2. Once we have a room number tomorrow, we will update the web page and give that information for anyone wishing to visit or call. Please remember that no sick visitors are allowed on the floor...even a cough can be dangerous for the children up there.
Keep us in your thoughts and prayers and remember, "no matter where you go....there you are!"
Monday, August 05, 2002 at 10:31 AM (CDT)
THE LESSON FOR THE DAY! WHAT IS THAT CRAZY "ANC" THING THAT I KEEP REFERRING TO?
WBCs (leukocytes): White blood cells fight infections caused by bacteria, viruses, and fungi. The two types of WBCs are neutrophils and lymphocytes. Neutrophils fight infection while lymphocytes are responsible for your immune system. When your neutrophil count gets too low (neutropenia), you are at the greatest risk for infection.
ANC stands for Absolute Neutrophil Count, or the number of neutrophil's that are currently part of the WBC.
An ANC of 1500 is required for Zman's current protocol and platelets of at least 100,000 are required.
Zman has had an ANC of 500 for a week now, his platelets are over 325,000!
WELCOME TO THE WAITING GAME! I'M YOUR HOST, Sica Waitin.
Our first question goes to Scott from Jensen Beach. Ok Scott, the category is waiting for results from the doctor. What is the longest amount of time the doctors can make you wait for results from tests?
"Ahhhhhhh, I'll guess.......2 days."
Sorry Scott, doctors routinely schedule tests on Fridays, so they can make the family wait for the entire weekend to get results. And then, they'll golf on Mondays just to add another day to the mix.
Next question: Which level in a parent is inversely proportional to the level of ANC in the child?
"Hmmmmmmm......I'll say the stress level...it goes up as the ANC goes down."
RIGHT! You're eligible for the bonus lightening round. For triple points and a trip to sunny West Palm Beach;
Your child is enjoying his extra time at home, playing and just being a kid. You are anxious to get back into treatment to hopefully kill some more disease. Do you pray for the counts to shoot up so you can return to treatment, or do you pray for more quality time at home for your family?
"Well lets see......I definately want to kill more disease, but on the other hand, I want as much quality time at home as possible....but FUTURE quality time may hinge on getting back on chemo......but chemo could shorten our time and reduce the chances of having ANY more quality time.....Hey, is this a trick question?"
You've given your answer in the form of a question, and that is for another game show....sorry Scott!
You don't get the trip to WPB today, but you've earned the right to compete in our tournament of champions! Goodnight everyone, and remember: No prizes are rewarded until answers are reviewed by our law firm, Dewey, Chetum & Howe.
Sunday, August 04, 2002 at 08:28 AM (CDT)
Well, well, well.....every day brings new adventure. At 2am this morning, Zachary woke us up with leg pain. This is a first!
We know from the NYC testing that he has bone lesions throughout his body, including both tibias and ankles. Up until this morning, he has only ever complained of back pain, and that only happened at original diagnosis and at relapse. Once in treatment, the pain disappeared.
I would love to write it off as 'post neupogen' pain, but it has been 9 days since the last dose, and he's never complained of leg pain AFTER the shots have stopped.
So, where does that leave us? Well, there is always the 'growing pains' diagnosis that we can throw into the mix, but other than that, I am at a loss. I guess I'm open for ideas from anyone who cares to offer them, becuase I'm not really to keen on flipping the two-sided coin that gives us lesion pain (from an aggressive-chemo resistant cancer) on one side and growing pain on the other. So if anyone can offer up about 14,243,088 other ideas, I'll get to work on a 14,243,090 sided coin!
We're getting ready to head to church, maybe the answer is there. We plan on having a good day together, and then tomorrow morning we recheck counts at 9am.
Scott
Friday, August 02, 2002 at 01:46 PM (CDT)
Well, the final score of this weeks big match between Zman's ANC and Scott has come to a close. The big winner was of course: ANC = 500 and Scott = 0!
Being the naive person that I am, I was actually expecting Zman's ANC to start climbing.....but Murphy's Law intervened and here we are waiting for Monday and another chance to have an ANC over 1500. I called Vegas a little while ago, and the bookmakers have assured me that by 6pm this evening they will have a line on the odds of us getting over 1500 by 9am Monday morning. Now, please don't place any massive bets and then show up at our doorstep with handfuls of neupogen! No, no, no, that would not be fair...you all know the rules. No neupogen within 48 hours of chemo on this protocol....and no insider trading!
Well, the good news is that we get another whole weekend at home. The bad news is that with an ANC of only 500, we have to still be cautious about being in public....and we were SO looking forward to the annual Chicken Pox Swap that takes place this weekend. Well, we'll just have to make do with PS2 and some rental movies.
Zachary wanted to send out a special hello to his three buddies that are fighting the war on cancer away from home right now, Robert, Mitchell & Cameron....keep up the good work guys...we're holding down the fort until you return.
I will update the page again on Monday, hopefully from St. Mary's!
Scott
Wednesday, July 31, 2002 at 06:14 PM (CDT)
Hello everyone,
Well, for those of you that have called us this week at the hospital to say hi, we're not there yet! Apparently, the doctors are ready to order the chemo, the nurses are ready to give the chemo, Rebecca and I are ready to help Zman GET the chemo, and Zman's platelets are ready to get chemo......but is the ANC ready? Noooooooooooooo..
..........of course not, that would be too easy. So, we rechecked his counts today, and the ANC, in an obvious atempt to tick us off, has actually gone down since Monday. We can only interpret this move as a poorly timed attempt to negotiate a better contract. We're willing to wait the ANC out, so we'll try again on Friday morning. If the ANC has reached at least 1500, then we'll be off to St. Mary's. The platelets only have to be 100,000, they were 101,000 on Monday, and today they've shot above 200,000. So, it seems the ANC has us by the short hairs!
Sorry I haven't updated the page since Sunday, but Zman has been enjoying the extra time off, and we keep expecting to be re-admitted for chemo. I promise we will update on Friday so everyone knows our schedule. IF we DO get in on Friday, then chemo will be from Sat. thru Wed. (Don't hold your breath.)
Scott
Sunday, July 28, 2002 at 10:53 PM (CDT)
Hi there everyone,
Zachary had a great 4 days at home! He got to play with Lars and Sarah, and today, his good friend Mitchell came up with his family from WPB to enjoy a BBQ with us and the Schmidt family. Zachary got to see Reign of fire with me yesterday, he certainly likes those dragon movies. We also got to spend the late afternoon and dinner with some friends that were nice enough to invite us over. By late afternoon, Zachary started to get a little bit cranky. I don't know if we just did too much today, or if he was getting upset about going back in tomorrow. It was probably a little of both.
He talks alot more often about quitting the treatments and not having to go through any more. We believe he is frustrated with the loss of control and the ongoing hospital stays. Zachary remains pain-free, with lots of energy (when his counts are good,) and overall, he is getting excellent quality of life when he doesn't have an infection.
We are not ready to quit! If Zachary was laying in a bed, in pain and unable to have any quality of life, then I imagine I would by typing a different message here. Thankfully, we are not currently in that place! If you haven't experienced this first hand, or seen the anger, fear, and frustration that he goes through, then it is hard to comprehend how difficult it can be to try and keep him focused on the job at hand. We are doing our best to work together and to show him how life is definately worth fighting for!
We go back in tomorrow around lunch time. Zachary's counts should be good enough to get admitted and to start hydration for chemo on Tuesday. Chemo will last for 5 days, so if everything goes as planned, we will be released on Saturday.
Scott
Wednesday, July 24, 2002 at 05:24 PM (CDT)
Home sweet home!
Yes folks, we actually made it home today. I know for some of you that have endured lengthy hospital stays, this 13 day jaunt seems like a walk in the park. We even had 6 weeks in Gainesville for Zachary's bone marrow transplant. However, we knew going in what to expect for that. This trip started with a "standard" fever. It was only supposed to last 48 hours! LOL Yeah right. Those of you that have had bacterial or fungal infections and have had to stay hospitalized for an eternity know the feeling. Thankfully, we dodged the fungal bullet and with the help of some IV Merapenum, we were able to clear up the Typhilitis. The CT Scan from yesterday confirmed that the lining to the intestinal wall at the cecum and ileum have improved greatly!
We now recheck blood counts on Friday morning, and if Zachary's prayers have been answered, that will be the last day of neupogen for a week or so. Then, we get readmitted on Monday, assuming his ANC is still above 1500, (today's was 2800,) and his platelets are above 100,000.
Monday night will be mainly about hydrating Zman so his urine specific gravity is below 10. Tuesday we start the chemo, five days of irinitecan with the first two days adding on cytoxin. So, if he is doing well by the end of next week, we should be home on Saturday August 3rd.
No news is good news, so if I don't update the page for a couple of days, don't assume the worst! I may be relaxing with Rebecca and Zachary, and just enjoying some down time at home.
Scott
Monday, July 22, 2002 at 08:39 PM (CDT)
Hi everyone,
Zachary had a great day today! Still no fever and he is eating and drinking much better. He spent most of the day out of his room, in the playroom and walking the halls for a bit. The doctors want to get another CT Scan of his belly tomorrow to make sure his Typhilitis is truly gone, or at least much improved. His ANC has gone up to 680, and that is a good sign that he's rebounding well and reducing the risk of infection. His platelets have dropped again, but they may rebound tomorrow. If not, they will give him some before we leave. It is looking like Wednesday will be the earliest that we could go home, but we're just happy to have him feeling well and acting more like the Zachary that we know.
Thank you for all of the guestbook entries, Zachary loves them!
Scott
Sunday, July 21, 2002 at 06:01 PM (CDT)
Good evening everyone.
Zachary had a really good day. He still doesn't have a fever. He has been eating and drinking much more today, and only had pain a few times. The doctor feels that if his ANC (which was 300 today) gets above 500, (probably Tue.) then we can go home and finish the IV antibiotic there either with a nurse, or by doing it ourselves. If he stays healthy through the weekend, and his counts maintain the required levels, we would be back in the hospital on Monday the 29th for the second round of chemo. Not much of a break, but it would be Zman's first full weekend home in 5 weeks.
Zachary is looking forward to playing PS2 with his buddy Mitchell who is coming in for treatment tomorrow. If you would like to check the progress of a couple of great guys that are in treatment and fighting battles like Zachary, please check out the links at the bottom of the page. The 3rd link is to a really informative webpage that gives some wonderful insights for anyone wanting to know what it is like to have a child with cancer. That page is www.squirreltales.com.
Hopefully we'll be home in a few days...we'll keep everyone posted.
Saturday, July 20, 2002 at 05:33 PM (CDT)
What a difference a day can make. Zachary has not had a fever since 8pm last night. He had two bowel movements that started to resemble something other than 5 day old coffee. He has eaten much better today and he has been drinking. The infectious disease doctor said that if he gets a fever after 2pm today they have to start him on the anti-fungal medicines and begin looking for a fungus. We're still hoping to avoid that scenario.
Zachary was able to ride in the wheelchair and join Rebecca & me while we ate lunch downstairs. We sat outside afterwards and got some fresh air for about 20 minutes. Tomorrow, we will get Zachary walking more...even if it's around the hall. It got very quiet up here today, there are only 2 other patients left on the floor.
Zachary's ANC came up a little bit today, so the trend is still good. If we continue to avoid fevers, and his ANC gets up over 1500, we might be able to get home by mid week and spend 4 or 5 days at home before starting round 2 of chemo. The doctors want to make sure the typhilitis is completely gone before we start any more chemo.
We're in room 2511 for anyone that wants to call and say hi. If the phone rings without an answer, then we are probably online, so try later or call my cell. 772-215-2526.
We'll update again tomorrow.
Friday, July 19, 2002 at 07:59 PM (CDT)
Another long day in paradise. ***Warning*** This journal entry is rated R for it's detailed description of bodily functions.
I stayed with Zachary last night in the hospital. He had a pretty good evening up until 12:00am right before he went to sleep. He had really bad diarrhea (is there such thing as GOOD diarrhea?) I thought we would have some rest after that, but unfortunately, at 1:00am, he woke me up with the news that he had more diarrhea and hadn't been able to get out of bed. I really have to give him credit. He kept his composure and was a real trooper. I got him into the bathroom and (after putting on a full Hazmat suit) got him cleaned up while the nurses took care of the bed. He was able to sleep until the 3:00am pee break and thankfully didn't have any more diarrhea the rest of the day. All in all, I would say we all made it through the night without any major scarring. Although, the jury is still out on the pajamas and underwear, but having read the paper this morning and seeing the state of the economy.... it's probably a good thing that we have to go out and spend some money in the market place for clothing.
Zachary had a fever again until 3:00am. He was able to somehow avoid a fever until 7:30pm this evening. We met with the infectious disease doctor today, and he wants to give this powerful antibiotic at least another day before throwing in the towel and diving into the anti-fungal medicines. Zachary still isn't interested in eating, he got sick once today but did drink a little more today than he did earlier in the week, and his ANC has finally showed up. A whopping 160...but we'll take it! Hopefully tomorrow he will have jumped up some more and the fever will disappear.
Zachary was able to play with his friend Mitchell who was in for treatment today. They got to play some PS2 and watch some tv. A couple of the hospital volunteers also came in to our room and spent time with Zachary playing cards. He's getting a reputation for being VERY competitive when it comes to games......I can't imagine where he gets it from???? Must be Rebecca's side of the family.
My father-in-law has been down since Wednesday helping out, and we had hoped that he could stay until early next week. However, circumstances at home in New Hampshire have come up that will require him to leave early tomorrow morning to head home. I don't have a real good handle on how much longer we will be at St. Mary's, but I'm guessing that the best case scenario has us leaving in about a week.
I hope no one was offended with the graphic nature of the journal entry...I can only offer my promise that no animals were injured in the writing of this journal.
Scott
Thursday, July 18, 2002 at 09:48 AM (CDT)
Sorry for not posting a journal entry yesterday, it's been hectic here. Zachary's fever does not want to go away. Last night it got up to 102.4. Our doctor has now called two other doctors in to offer advice and consult on a possible course of action. One is the pediatric surgeon that implanted Zachary's first port, and the other is an infectious disease specialist. The infectious doc reviewed Zman's CT scan and ordered a different antibiotic, Merapenum. It is supposed to be much stronger and will replace both the Fortaz and Clindomyacin. Tomorrow he will come in and examine Zman and determine if he wants to do any other cultures or test. Today, the surgeon examined Zachary and said that his belly looked good, and he thought the antibiotic would take care of the inflamation in the ileum and cecum that showed up on the CT scan, and that at this point it would not require surgery. Zachary had a little bit of blood in his urine today, so they are rescreening his urine and stool to look for problems there.
It has been a rough week for Zman. He is getting tired of all of the medicines and pains that come along with low counts and fevers. He will be getting more platelets today, they gave him blood again yesterday. Zachary has helped us come up with a plan to keep him motivated to get through all of the treatments that he will have to face. After he is done with all of this, including NYC and the monoclonal antibody treatments, he wants to learn how to snow ski. Fortunately for him, I grew up skiing in PA and somehow managed to ski for about 20 years without doing any major damage to myself or anyone else. So, we will hopefully be able to keep him focused on the job at hand, and when the going gets tough, we will talk about the snow, skiing, and how much fun it will be.
Zachary loves to get messages in his guestbook, so thank you again to everyone that has been taking the time to drop him a note.
Tuesday, July 16, 2002 at 10:05 AM (CDT)
Every day is a new adventure at St. Mary's. Last night Zachary's fever returned....it only lasted for a short time, but the doctor feels that if it shows up again today, he will have to start him on an anti-fungal IV med. Zachary has been on the antibiotic since Thur. evening, so the fever should not be from a bacterial infection. He is having a tough time with his belly. Some of the medicines need to be taken with food, they are rough on the belly. He hasn't been able to eat much, so they are even tougher on him. We're trying to break the cycle so we don't have to get IV TPN for nutrition. They want him walking more so he can loosen up the phlegm that is giving him nausea, but he gets dizzy from having been on his back for so many days.......we're working on it! Keep us in your thoughts and prayers.....we'll find a way to get around all of these obstacles.
Monday, July 15, 2002 at 11:38 AM (CDT)
Welcome to a new week everyone! We're still at St. Mary's Hospital. Zachary hasn't had a fever in a couple of days, but his ANC is still 0, so the doctor has decided not to release us until Zachary gets some neutrophils...which will probably be at least another day or so. In the meantime, he has had some chest/belly pain that has required Morphine, but with the medicine, he has remained fairly comfortable. Zachary's friend Mitch is here for treatment today, so they will be playing playstation and tormenting the staff to the best of their abilities. If we get home in the next couple of days, we'll be back on Monday for round 2 of the chemo.
Friday, July 12, 2002 at 10:01 AM (CDT)
Well, Zachary ended up getting a fever Thursday afternoon. The doctor had us wait until 8pm to make sure it didn't go down on it's own. It didn't, so we're back at St. Mary's. Room 2506. After we got here, Zachary starting having really bad nausea and diahrea, so it's a good thing we're here getting IV fluids and antibiotics. He'll need to be without a fever for 48 hours before they will release us, so the earliest that we would get out would be sometime on Sunday. We have the laptop in his room, so he can see your messages in the journal. As always, thank you all for your thoughts and prayers.
Thursday, July 11, 2002 at 09:06 AM (CDT)
Zachary has been home since late on Saturday night. He finished his chemo early Saturday and is now resting at home. His counts have started to drop, and are expected to get even lower within the next few days. We recheck the counts tomorrow to find out if we need any blood products, if not, we will be rechecking them early next week. Hopefully we will be able to avoid a fever, so Zachary can spend a full weekend at home, (his first in over 3 weeks.) Thank you all for your continued support and prayers.
Thursday, June 27, 2002 at 02:34 PM (CDT)
ZACHARY'S STORY IS STILL IN THE OLD JOURNAL SECTION! PLEASE VISIT THAT AREA TO READ HIS STORY.
Zachary has done well will the testing so far. He came through the bone marrow aspiration and biopsies today with very little discomfort. Tomorrow we have the CT Scan and MIBG, then we will be finished for the week. We hope to see everyone when we get home. Thank you for all of the support.
Thursday, June 13, 2002 at 10:08 AM (CDT)
**** THE STORY OF ZACHARY'S ILLNESS OVER THE PAST TWO YEARS HAS BEEN MOVED TO THE JOURNAL HISTORY SECTION. PLEASE VISIT THAT AREA IF YOU ARE INTERESTED IN GETTING PAST DETAILS.*****
We will be updating this area as often as possible so you can stay up to date on Zachary's progress!
Zachary is preparing for summer camp. Boggy Creek will be hosting children with cancer from 6/18 - 6/24. He is still feeling great and should be able to participate in archery, swimming, basketball, fishing & all of the other great activities that they have there. We are scheduled to go to NYC for testing and evaluation after Zachary gets back from camp. After that, we are hoping to begin a new regimine of chemo that will hopefully reduce some of the bulky disease that is still present from the last treatments. If improvement is shown after two rounds, (6 weeks,) then we will hopefully be returning to NYC for follow-up testing and the start of the Monoclonal Antibody treatments.
Monday, May 27, 2002 at 04:40 PM (CDT)
THE ZACHARY FINESTONE STORY
Zachary was 5 years old when he started to experience back pain while playing t-ball in a local under 6 league. After several trips to the pediatrician that resulted in a diagnosis of a “pulled muscle,” Zachary was taken to an Orthopedic Surgeon who ordered an MRI that showed several tumors on Zachary’s lumbar and thoracic spine. On March 16, 2000, 15 days after his 6th birthday, Zachary was admitted to St. Mary’s hospital where he was diagnosed with stage IV neuroblastoma. Over 90% of his bone marrow was cancerous, the primary tumor was located at the left adrenal gland, there were two lymph nodes that were cancerous, and he had bone lesions in his head, up and down his spine, and in both hips.
Zachary was immediately started on an intensive 12-week protocol of chemotherapy that included all of the nasty chemicals used to treat this horrendous disease. He had many ups and downs, including an emergency room visit for dehydration, and a reversal of progress from low counts that caused a delay in treatment. After his protocol, we took Zachary to Gainesville. There, at Shands Hospital, doctors surgically implanted a catheter in his neck that was used to harvest “clean” stem cells for use in a transplant. After the harvesting, we returned to St. Mary’s where surgeons removed the “green apple” sized tumor, including the left adrenal gland and two lymph nodes. He spent a week in intensive care recovering from that. After recovering from the surgery, we took Zachary back to Shands Hospital. It was now mid August, and time for the transplant. The transplant basically consisted of 3-4 days of very high doses of chemotherapy that were used to kill everything. The stem cells were then given back to him so they could set up shop in the bone marrow and start making blood cells again. Without these stem cells, the chemotherapy is lethal. Extreme levels of nausea, mucusitis (mouth sores), and low blood counts followed this process that lasted for weeks. During this time, Zachary was given several medicines to combat the nausea, one of them, Reglan, caused an adverse reaction that started at 11:00pm one evening, and lasted about 10 hours. Zachary spent the next day unable to talk or communicate. His eyes remained unfocused and rolled up, his back and muscles constricted and contorted his body, and he lost all control of his bowels. After 10 hours of I.V. Benedryl used to “cleanse” out the Reglan, he began to recover. Zachary also had an adverse reaction to one of his asthma medicines that required emergency doses of Benedryl to counter them. He endured all of this, and after 6 weeks in Gainesville, we finally came home. The last of his treatment included 15 days of radiation to his head and belly, which he tolerated much better than all of his previous treatments.
Three months after Zachary’s treatments, he underwent his scheduled bone biopsy and bone marrow aspiration, to check on the levels of cancer in his marrow. On the last Thursday in November of 2000, the doctor called to tell us the bad news. The transplant had failed. There was still over 3% cancer cells present in his bone marrow. At that time, the doctors informed us that we needed to have Zachary’s wish from the Children’s Wish Foundation expedited, because he would be too sick in 8 weeks to take a trip. All of December 2000, we somehow went on with the knowledge that we were losing our son. During the 1st week of January, we saw the doctor for a meeting to discuss an experimental drug that we were set to try in mid January. During that visit, Zachary’s blood counts were routinely checked, and the doctor noticed that some of his counts were improving. He asked that we subject him to another bone biopsy and bone marrow aspiration to recheck the results from the prior month. We did, and on Wednesday, January 10th 2001, at approx. 2pm, the doctor called to say that Zachary was in remission. The doctors feel that the cancerous cells that had shown up on the previous test were “dying” cells that were no longer present. We attribute the remission to all of the prayers that were being said for Zachary around the country. Zachary had two other major series of tests after that, and both of them have come back clean. His port was removed in the beginning of November 2001, and he began a schedule that included blood and urine checks every 4 months. He regained all of the weight that he lost during treatment, and he even managed to add on a few more pounds. The two reminders that Zachary will live with for the rest of his life, are an 8” scar across his belly from the surgery, and hearing aids in both ears that compensate for the 50% loss of hearing incurred from the high doses of chemotherapy. He enjoyed a season of soccer in the under-8 league, and was doing very well in 2nd grade.
Three months after Zachary’s port was removed, he started to experience some back pain again. The doctors had told us over a year ago, that if the cancer ever returned, it would probably come back with the original symptoms. We brought Zachary to the Oncologist 1 month earlier than his scheduled checkup. Within a week, his urine test showed signs of disease. He underwent a bone scan and a bone marrow test, both showed that the cancer was back in his marrow and that he had new lesions on his shoulder, arm, both hips, his spine, and both ankles. Sadly there is virtually no survival chance with recurrent neuroblastoma. All that the doctors could offer us was a chance at buying some quality time. There have been some cases where children like Zachary were able to get an additional 12 – 24 months of remission. Some have even gotten an additional 12 months after relapsing a second time. Unfortunately, the end result is always the same, a child lost to cancer!
Zachary bravely decided to fight for more time. We consulted with many doctors and opted for a chemotherapy protocol that included 5 sessions of chemotherapy given over a 5-day period, with 16 days off in between. This protocol will end near the end of May. Zachary underwent 2 of these sessions, and then we did some preliminary testing to see what kind of response he was getting from the chemo. The tests showed that the bone marrow disease had reduced from 10% at relapse to 5%. The bone lesions had remained the same. The doctor’s had said that after 2 rounds they wouldn’t expect a change, but were hoping for no new lesions. After completing the 5th round, Zachary underwent more scans and a bone marrow check. This time, the bone marrow stayed the same, and the news on the lesions was mixed. One test showed them as unchanged, and another test show them as not having active cancer cells. We are preparing to do a 6th round of chemo while we make plans for a special x-ray that should give more conclusive information regarding the bone lesions. Based on his physical examinations and his demeanor, we are hopeful that he is getting a positive response from this protocol and that we are indeed buying some time. There are two new procedures that we are considering. One will take us to New York for special treatments the other is a pill that can be done at home. We are now working with our doctors to sort through the information so we can make an educated decision. Our family remains focused on the goal of getting as much quality time with Zachary, without sacrificing quality of life.
Monday, May 27, 2002 at 08:15 AM (CDT)
On Tuesday May 28, 2002 we will be entering St. Mary's Hospital to do a 6th round of chemo that will last for 5 days. We are researching two different treatment plans to use once Zachary recovers from this round of chemo.
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