History

Monday, December 29, 2008 9:28 PM CST

OK...don't get excited. This is not a new journal entry. On the last day of the year, I decided to do something completely different. (You Monty Python fans will remember that line.) My entry from Monday is below, unchanged, so if you haven't read it, you won't have to go back into the history. I am adding this brief paragragh to the beginning to direct everyone to another caringbridge page. Our dear friend Kathy wrote an update addressing the advice that we were given, and as always, she did a much better job of puting into words an explanation as to why that advice was not helpful. At the bottom of this page there are three links to other caringbridge pages. The first one is Robert's....go there and read that entry.

(Monday's entry)
If I were a smart man, I would probably hold off on writing this journal entry until my emotions were more in check. (For the record, I have never been accused of being a smart man.)

I’ve got a fair amount of stuff to cover tonight, so I guess I’ll start with the part that upset Rebecca enough that she brought it to my attention. In our guest book, this following entry was posted yesterday afternoon:

“We've been in your shoes and are so sorry you're there. We've fallen in love with your sweet son and all of you and have followed your story for years as ours with our kiddo ended a few years ago. Our advice to you is to stop the blood transfusions and let him go. Let him be pain free. There is no need to continue to watch him suffer. We still cannot shake those terrible images. You want your mind filled with good ones. We wish we would have followed others' advice and not kept ours going on for a couple more weeks when the suffering was like Zachary's. By stopping the red blood transfusions he'll have a peaceful death. He should go to sleep and then you can honestly talk with him as you're struggling to do before he goes to the next place. Our hearts and thoughts are with you and I hope you're not upset by our honest advice but we have travelled your road and would change things if we could.”

Fellow Angel Parent
- Sunday, December 28, 2008 6:48 PM CST

OK…before any of you freak out and start ranting and raving about that post, let us all take a deep breath. This person lost their child to cancer. They paid the ultimate price, and because of that, they deserve the benefit of the doubt. I don’t think they woke up and decided to maliciously hurt our feelings or cause further pain and suffering in our home. Now, having said all of that, I do think that they have overstepped the boundaries when it comes to dealing with a child’s end of life issues. Offering advice, insight, ideas when you have walked this path of despair, is noble and honorable…………..telling a parent to “let him go” (referring to Zachary), when they have not seen him enjoying his friends, seen him enjoying his family, sat with him as he cracks jokes and laughs, played video games with him, watched movies with him, GONE to the movie theater with him…….is just not fair!

We have seasoned hospice nurses in our home several days each week. I have asked them on several occasions whether or not they agree with what Rebecca and I are doing in regards to the blood transfusions, and they have ALWAYS said that as long as he is enjoying life like he has been, it would be criminal to not give him that opportunity by withholding blood transfusions and shortening his life. Zachary does have some pain…..not always…..not all day…….mostly he is comfortable. He is trying to LIVE…………..until he dies. He is making the most of an impossible situation……and he is doing it with humor, dignity, honor, grace, courage and more poise and maturity than I have seen in most adults. When Zachary tells us that he can no longer endure the transfusions, and that he wants to let the process run its course, then we will be there to support him, to cry with him, and to let him go on his terms. He is still grappling with all that is happening to him. Sometimes he still talks about the future like he will live many more years, and then at other times he asks for medicine to relieve his anxiety over changes in his body that disturb him….like the bumps on his head, or his weakness.

To the person who wrote that entry….I am truly sorry that you lost your child…no parent should have to bury their child….it is a nightmare that is all-encompassing and consuming of every fiber in your being, and I wouldn’t wish it on anyone! You have paid the ultimate price already, so I won’t add to your misery by “beating” you up on here……please don’t add to OUR misery by suggesting that we take a drastically different path than the one that we have already chosen for Zachary. We are working through this the only way that we know how, advocating for Zachary so that he can be as comfortable as humanly possible while at the same time trying to maximize his quality of life. I don’t believe that there is a “cookie cutter” answer on how to accomplish that for all children in this position. Had we taken that advice 23 days ago, Zachary would be gone already. He would have missed out on many, MANY days of quality time with family and friends. In fact, today was a perfect example of how you can’t underestimate his desire to LIVE and enjoy life.

Zachary started the day with some discomfort in his lower right side, under his rib cage. His nurse stopped by to check him out, and he felt that the pain might be Zachary’s liver. There is a small chance that Zachary’s recent constipation issues are causing the pain, but more than likely his liver is starting to shut down. If it is indeed his liver, we have been told that eventually that organ’s demise usually leads to chemicals being released in the body that go to the brain and shut down the body to where he would no longer be conscious, or in pain, and he would then die shortly after that. If that is the process that his body is undergoing, then he will be comfortable at the end. We are constantly looking at his pain and how often he uses his pain pump. The doctors and nurses are on top of that, and that are making adjustments to keep him comfortable as needed. Tomorrow we will get platelets again, and if that trip proves to be too much for him, then we will try once more to have the transfusions done here at home, but if that fails again, we will discuss with Zachary the option of not doing more transfusions, unless he wants them.

(Back to today).

He spent most of the morning and afternoon in bed. He had a parade of friends over who watched movies with him and played video games. He ate some fruit with whipped cream, drank a bunch of drinks, and had a fairly good day. Then at 6pm, things changed drastically. The doorbell rang and into our humble abode walked Jim, the manager from the Hooter’s restaurant in West Palm Beach, and right behind him were three VERY lovely ladies in their full Hooters attire. They had a special Hooters calendar, autographed by the Hooters ladies, four extra calendars for Zachary’s friends, five t-shirts, a deck of cards and some bumper stickers. Not only did the girls go into Zachary’s room to visit with him, but they spent about an hour sitting with him taking pictures, looking through the deck of cards, exchanging phone numbers (he’s my hero by the way), and just having a good time!

We are VERY grateful to Jim and the ladies from Hooters for making the 45 minute drive up here to just to cheer Zachary up. A few of his friends came over to share in the joy, and he clearly was on top of the world, basking in his glory. (Of course there is a photo or two in the album for you to enjoy.) I would also like to make a special mention to some of MY friends who were kind enough to sacrifice their evenings at home with their families to be here tonight, with me, to help me with taking pictures of the Hooters girls, and joking around with them. If it wasn’t for Eric, Mike, Sarge and Ian, I don’t know if I would have been able to get through the night……they were there for me, to help me with the Hooters girls, and I applaud their sacrifice!

After the girls left, Zachary surprised us yet again by walking out of his room with almost NO assistance to the couch, where he sat down, grabbed one of the Wii remote controls, and proceeded to beat his uncle Ian in bowling. He stayed out in the family room for about an hour; playing and visiting with our friends the Flutie’s who were over visiting. It was a GREAT night….the kind of night that we didn’t think we would get again, especially since he has stayed in bed for about three days…….but we DID get it, and he enjoyed it, and that is ALL that counts in my book.

He is already asking about New Year’s Eve, and what plans we have.

He still wants to live…..his body may have other plans, but I am NOT going to quit on him………..I am NOT going to quit on my son!!!!!!

I refuse!

Scott

Saturday, December 27, 2008 7:18 PM CST

Christmas day started out with vomiting into the pink hospital bin. After that things got a little bit better. Zachary opened gifts but stayed in his room all day, sleeping, watching movies with his friend Blake, and just taking it easy. Friday he got two bags of platelets and one bag of blood, so he had a little bit more energy. Friday night we went to a movie with his friend Emma, and then today he had the energy to go to four stores…..shopping for toys, ear phones, etc.

His eating cycle is all over the map. Some days he doesn’t seem to want anything, and then others he surprises us by eating a few meals. His nurse came to evaluate him today, and she was pleasantly surprised at how good he looked. (She hadn’t seen him since he was first discharged.)

Before I forget….if you live under a rock and missed my Wednesday update, then you won’t know to look in the photo album for the picture of the new tattoo. Zachary is getting a LOT of compliments on this one. Everyone who has come over to visit has admired it. (He is already talking about getting another one.)

I know that several journal entries ago I wrote about being tired, but I must have been delusional, because NOW I am tired. We don’t seem to be able to fall asleep before 12am or 1am, and then we hear him in the middle of the night, getting up to pee or moving around in his bed, and then by 6:30 or 7:00 we are usually up and unable to fall back asleep.

Rebecca’s brother Ian, his wife Kelly, and one of their sons, Noah came tonight from Georgia for a week-long stay, so the cavalry HAS arrived. Hopefully now we can get some sleep during the day if we need to recharge our batteries.

We have received many kind guest book entries and emails from folks all over the country…..thank you all for your continued support and words of encouragement…..we really do appreciate it. If we don’t reply to your emails, please do not be offended…….our days don’t always go the way we plan them, and it seems that when we have down-time, the last thing that we are looking to do is spend hours on the computer.

Zachary is still flip-flopping between a melancholy state of mind where he seems to be fully aware of the situation, and a blissfully unknowing state of mind where he talks about “when I am back to feeling 100%.”

It is very difficult to hear him talk about the future, knowing that his poor body is failing him miserably.

It is very difficult to look at him without recognizing that he will more than likely never feel better than he does right now. (For the record, he feels pretty shitty right now. He is weak, he was trying to move from one couch to the other today….about 5 feet….and he semi-collapsed onto my computer chair before getting onto the second couch. He immediately started to cry…not because he hurt himself, but because he realized that he is too weak to even move that short distance without help.)

If you are a parent who has already traveled down this road, then I need to get from you the magic elixir that you used to survive this impossible situation. Surely there was something that was passed down to you that allowed you to get through each and every day without collapsing. I promise that I will not reveal the secret ingredient to ANYONE……..help a guy out…….share.

Scott

Wednesday, December 24, 2008 4:34 PM CST

The new tattoo is now featured in the photo album. I also included a photo of the girls from his high school who came to visit him after he got the first tattoo. They interviewed him and played some of that tape on the high school morning TV show that plays in all of the class rooms.

We got word today that some of the kids thought it was a joke and that the tattoo was fake. I don’t think his classmates read these updates, but if any of you out there doubt the validity of Zachary’s tattoos, please do not hesitate to come over and visit so you can check them out in person. They are real!

The newest one is the Japanese symbol for the word “Love”, and written around that it reads “In Memory of too many.” (Referring to the many children who have died from cancer…..Zachary came up with that one on his own.) (As always, feel free to cry….I did.)

This new tattoo has three colors, a purple border, blue letters and a red symbol. He said that it definitely hurt more than the first one, because of all of the line work that the artist had to do. The “pain” tattoo was done with filler needles…..whatever that means.

Yesterday Zachary had a pretty quiet day. He was tired, and his right eye began to swell shut again, so he was not as comfortable or lively as he was on Monday. We seem to go in cycles, where he gets one really good day, and then he has a day of rest. We upped his steroid medicine to address the eye issue last night, and he slept well and it looks somewhat better this morning. Today he has had several visitors and he even took a shower.

Every day Zachary has made one comment or another about his future, referring to things that he WILL be doing months or even years from now. We weren’t sure if he was using this as a coping mechanism, or if he was just too drugged up to remember the conversation with the doctor about there being no treatment available to him. We have been told that some of the children who get to this stage will worry about their parent’s feelings and try to maintain a strong front, in an effort to shield them from what they know is coming.

Yesterday Zachary made a comment to one of his friends who also wants a tattoo. The boy said that he wanted to get a cross and have the dates of people close to him who have died, and Zachary apparently asked him if he was going to include his passing. Then today, while I was helping him dry his hair after his shower, he mentioned the largest of the bumps on his head and said, “That one is getting pretty big, like Cam’s did. (Cam was a boy who Zachary was very close with who died from neuroblastoma several years ago.) I guess I won’t have to worry about it for much longer.”

(Once again…..feel free to cry or even sob a bit……it works for me.)

He knows.

In his heart, he knows that we are home, and that there is no treatment on the horizon.

He sees all of his friends coming over, and all of the attention that he is getting, and he knows.

He is just now starting to verbalize this, and it is heartbreaking for me to think of him worrying about the end, or focusing on what might have been.

There have only been a few journal entries that had me crying while I was typing them….and this is one of them. I am sitting 20 feet from him, in the next room trying to put my thoughts into this journal, and he is laughing and enjoying himself with two friends who just showed up after his shower. How amazing is he that he can lift himself up from the depths of the realization that he is dying, and enjoy himself, not letting it consume him or depress him to the point where life is no longer enjoyable?

I guess we all need to take a lesson from him on how to LIVE life, even when you see the end coming. The end may not be imminent. Maybe we have many weeks or even a month or two left….no one knows, but Zachary is continuing to LIVE, and that is the lesson that I will try to take to heart as Rebecca and I struggle to keep our heads above water.

Scott

P.S. To all of the mothers and fathers of the boys and girls who have been visiting Zachary, seeing his tattoos, and then demanding that they too be allowed to get one……..I would normally apologize for igniting a fire that doesn’t look like it will go out anytime soon, however, I am having too much fun watching Zachary gloat with pride over the fact that he is the only kid his age sporting “ink.”

Monday, December 22, 2008 7:41 PM CST

In 1976 singer Gordon Lightfoot released his famous ballad honoring the ship Edmund Fitzgerald that sank in November of 1975 in Lake Superior during a strong storm. One of the more memorable verses from that song refers to how the strength of the storm can be quite brutal….it goes:

“Does anyone know where the love of God goes when the waves turn the minutes to hours?”

Now that we are firmly entrenched in the hospice portion of our battle with his cancer, I can’t help but hear that verse with slightly different lyrics rattling around in my head……

“Does anyone know where the love of God goes when the cancer turns the days into minutes?”

Time is going too quickly for us. Zachary is starting to experience symptoms of progressing disease. He now has several bony bumps on his head that are tumors growing out of the bone. I don’t know if that means that they are growing inward too, but my guess is that the cancer is going in any direction that it can manage. Thankfully we have not seen any symptoms associated with this new development. Some days he sleeps all day and barely moves around in his bed, not wanting visitors and not even watching TV or using his computer….then we are blessed with days like today where he spent almost the entire day out in the family room, playing video games and enjoying his friends. Today didn’t start out too well; our morning was somewhat of a nightmare.

The transfusion room called this morning to let us know that they were ready to give Zachary his two bags of platelets. We got him up and dressed and loaded into the car and headed down to where the hospital is….about 10 minutes away. Unfortunately about 2 miles from the house he got violently ill and started vomiting all over himself, the dashboard, his seat, and the carpet. We stopped in a shopping plaza and found a Bealls store that was already open. I wheeled him into the restroom where he had his fourth round of diarrhea since last night at 8pm and Rebecca found a t-shirt and sweat pants to replace his soiled ones. We got him cleaned up and headed on to the hospital. Once there things went well. We ran into two of our neighborhood kids who have been coming over almost every day to keep Zachary company. They were there trying to donate blood in Zachary’s name. Unfortunately the blood bank is not at the hospital, so they came up to the transfusion wing with us and kept Zachary company while he got his two bags of platelets. Several of Zachary’s schoolmates have asked about donating blood and/or platelets, and the local blood bank now has a system in place to ensure that the donations are “reserved” for Zachary.

As for the vomiting episode, car rides have always been difficult for Zachary…….he gets dizzy and nauseous, especially when he is weak. We are still working on trying to get the blood products transfused here in the house, but sadly there is a ton of red tape to navigate through before that will ever happen. I am not optimistic that we will be able to clear that hurdle in time for Zachary to benefit from the new policies that need to be in place before it will happen. I believe that the people who need to take action on this and some of the other issues that we have been facing have their hearts in the right place; however they seem deeply entrenched in policies and procedures that were clearly designed for a senior hospice environment. It is my (and many others) opinion that the senior and pediatric hospice models are diametrically opposed. We are fortunate that the pediatrician who has taken on our case not only knows Zachary, but she is committed to helping build a pediatric hospice program that truly serves the needs of families in our unfortunate position. I’ve looked online and read some of the hospice mission statements, and the common thread that keeps coming up is similar to this one:

“A Dying Person’s Guide to Dying.”

I get the impression that hospice for seniors has always been more about dying, than living. Maybe I’m wrong.

I believe that in cases like ours, hospice for kids should be about LIVING, until they die. It should be about finding that delicate balance where quality of life is maximized without sacrificing the child’s or family’s sanity. Maybe I’m asking for too much. (Probably not.)

We are just over two weeks into this new “adventure”, and I am quite sure that I have already stepped on some toes. Maybe I get too worked up and emotional when things don’t go well….I don’t know……..but regardless, I don’t think that you will ever find me apologizing for advocating on behalf of Zachary.

I have lived this nightmare with him for almost nine years.

I have watching him battle courageously when the odds were stacked against him.

I have watched him endure countless treatments that would have scared off most grown men.

I have watched him consume some of the nastiest tasting concoctions known to man, all in the name of battling this disease.

I have watched him endure ridicule and humiliation from children who were too ignorant to know better than to pick on a child with cancer.

I am now watching him wither slowly away, losing pounds almost as we watch him.

I am now watching him fight pain and require steadily increasing narcotic pain medicines to cope.

I am watching my son lose a monumental battle with cancer, and at this point in the war, after all he has endured, after all we’ve been through, I’ve GOT to believe that there is better way to help him LIVE, until he is gone.

Scott

Saturday, December 20, 2008 10:25 PM CST

Here it is Saturday night and thought everyone would appreciate another update.

It’s odd, before we entered “The Hospice Zone”, any little medical anomaly would be somewhat disturbing in as much as you never know what is causing the odd pain or weird symptom. Now that we are firmly planted in bizarro-world, every little thing scares the crap out of me.

Yesterday afternoon Zachary started to complain about some belly/right side pain. The nurse who saw him last night thought that it was probably gas pain, which makes sense, because he has had that before, in the same area….and we know that it can be quite painful. Because he was not feeling so great last night, he asked if one of us would stay with him in the room for awhile as he fell asleep. I volunteered, grabbed my reading glasses and book, and planted myself in the comfy recliner next to him. Within minutes of him putting on his eye covers, he started to make some very disturbing noises. He was twitching, and gasping for air in a very odd way. I rubbed his shoulder and asked him if he was OK, and he responded that he was having nightmares. That same process repeated itself several times over. He would lay quietly for about 5 minutes, start to fall asleep, then begin moaning, gasping, and twitching……..I woke him several times, and each time he said that he was having bad dreams. Eventually he fell asleep, and apparently so did I, because I woke up at around 2:30am and he was sound asleep. I went back to our room and thankfully he didn’t move again until 7:30am this morning when I was up getting the paper.

Maybe I’m just paranoid, or oversensitive, but I am having a very difficult time with any and all symptoms/quirks. I cannot help but wonder if what we are seeing is the beginning of things getting worse, where there is no going back to him being comfortable and enjoying his time. Thankfully today he seemed to do pretty well. His belly/side was still bothering him, but he managed to come out into the living room for an hour or so to visit with friends. Eventually he went back into his room where the kids all followed to watch movies. He stayed in there until after dinner when he decided that he wanted to see a movie with two of his friends who were over visiting. I agreed to take him, so we met his friends at the theater. About five minutes into the movie he motioned to me that he wasn’t feeling well……I wheeled him out to the lobby and into the restroom where he promptly vomited large amounts of his dinner. I obviously offered to take him home, but he refused. He asked for a soda to calm his belly and wanted to go back to watch the end of the movie. I’ll admit that I was watching him almost as much as I was watching the movie from that point on, but he never had another problem. After the movie he asked to go to one of his favorite book stores, and he did fine there as well.

We have given him two doses of Miralax today, to promote some movement of the bowels, but so far we have been unsuccessful. If we don’t get results tomorrow, we may have to step up to magnesium citrate.

Today provided yet another long list of visitors who brought cheer, food, and a smile to Zachary’s face.

I had a heart to heart with my boss yesterday and we mutually agreed that the best course of action right now would be for me to take a family medical leave of absence. That way I can be here for Zachary and Rebecca, when they need me the most. This was a difficult decision, but my employer has been very understanding about our current position, and I am confident that when I return I can quickly get back to my ‘A-game’ and produce the kind of results that they expect from me.

One of the other issues that has been “haunting” me somewhat over the past week or so is how all of Zachary’s friends are taking this. I know that Rebecca and I have a lot on our plate, but what fun would life be if we didn’t get to worry about EVERYTHING at once?

A few of Zachary’s teachers have been visiting, and I asked how the kids are taking it………I got the sense that they were trying to shield us from that aspect of this horror story…….one of them did mention that some of the kids are taking it pretty hard….but mostly they deflected the question, so I didn’t press. Today, one of the girls who came to visit Zachary broke down and was crying when she saw him being helped out to the family room. I don’t think that he saw this, and she quickly exited the room to compose herself. There are a couple of trains of thought that I have on this. One is that I would rather not have him around a bunch of weepy/crying people who might further depress his already fragile psyche. The second train of thought is that he may value the emotion because it shows how much people care about him and how sad it makes them feel to see him sick.

I don’t know that there is a right or wrong here, so please don’t bombard the guest book with attacks or hurtful comments. Shortly after the girl regained her composure, she was in with Zachary, sitting and visiting and cheering him up.

I think that if I HAD to choose, I would say that I would rather not have people getting too emotional in front of him. He is very smart, and very observant, and even in his drugged up state of mind, I think I would like to avoid him being further freaked out than he already is. Most of the kids who come over are used to seeing his IV line, pump, jaundiced appearance, weight loss, etc. Having said that, it is NOT easy to see him so weak and deteriorating. I give a lot of credit to everyone who has had the strength to come over and visit…whether it was one time, or several times. And for those of you who have not been able to stop by, don’t beat yourselves up. This situation is gut wrenching enough without adding guilt to it……..we are all not built the same way when it comes to grieving……so don’t sweat it. If you can’t bring yourself to see him, please don’t hesitate to call, text, or drop him a card….he loves all of that.

We have been doing this for almost nine years. We have seen too many friends go through this….and if there is one lesson that I have taken from all of that, it is that it definitely sucks enough….without looking for ways to make it harder on yourself or others. I have written several times about how much we rely on our family and friends who are supporting us……..the feeling that we are all in this together is helping Rebecca and me to cope with the endless waves of fear and sadness that wash over us throughout the day. Don’t underestimate the value of having a shoulder to cry on.

Scott

Thursday, December 18, 2008 1:47 PM CST

Did I promise to update every day this week? (You guys are SO gullible.)

We have definitely had some ups and downs with hospice, trying to find a system that works for us, while at the same time following all of the rules and regulations that have been put into place to make sure families with young children who require the services of hospice are tormented and stressed out beyond comprehension. (It is a work in progress, don’t be too judgmental while reading this. [The keyword is ‘mental’] I may have been a little mental while living it, but we seem to working through some of the quirks.)

Zachary’s platelets were down to 4,000 over the weekend. (I may have written about that already….but I’m operating on a sleep pattern that is not optimal for coherent thought processes.) We got two bags of platelets on Tuesday, and that went relatively smoothly. Yesterday we noticed that he was very tired and “washed out”, so we knew that his hgb was low. (It was 8.6 on Monday.) After some finagling and several phone calls we were able to arrange for two units of blood to be infused today, and that is where we are right now. We are in the infusion room at Martin Memorial South, getting two units of blood. His hgb this morning when we arrived was 7.2, and his hct was 20. You can look those up, but trust me……he was down a few pints and needed an oil change. Within 20 minutes of starting the first bag of blood his blood pressure had already gotten back up to normal ranges.

We were going to give him more platelets today, since he was infused two days ago with two bags after dropping to 4,000...but today’s platelet count was 99,000! (That is a much higher bump than we would have anticipated….and they counted it twice to make sure.) Hopefully with the higher platelet count and the blood today, we will be good until Tuesday of next week when we will revisit blood issues again. (Kaynahorah, ptuii, ptuii, ptuii.)

Evenings at 650 NE Lima Vias remain wild and crazy. We have teachers, friends, neighbors, etc. all coming over to visit. We have voted again on this issue, and it was unanimous, we LOVE the company. It does get a bit crazy at times, but people seem to take turns in Zachary’s room visiting with him, (too many people creates a sauna-like effect in there), and the rest hang out with Rebecca and me in the living room, eating and snacking on all of the food that we have. (Thank you to everyone who has coordinated with Susan and Jennifer…the dinners are wonderful. And thank you to Benjy for permanently raising the cholesterol and sugar levels for an entire county of people who have been devouring the treats that he has given us.)

Seriously though, I cannot overemphasis how much we look forward to having a household of people to distract us and to keep us focused on something other than our obvious situation. I know that it is hard for many of you to see Zachary in this state. I’m guessing that he is now below 100lbs, although we haven’t weighed him lately. He remains jaundiced at most times, and does not get out of bed a whole lot. BUT, his eyes light up when he’s got company, he laughs, plays video games, watches movies, and gets to be a kid…….so we’ll take what we can get.

We finally got the web cam working. (Thank you to Mark and Susan for helping with that.) Last night Zachary was able to video chat with one of his cousins in Atlanta. Now that we have that up and running, I imagine that we will try to link with friends/family every day.

Scott

Monday, December 15, 2008 7:28 PM CST

Zachary had a pretty good day today. He was able to get out to the mall and to Toys R Us to buy some toys that he has wanted. Yesterday his left eye got worse, swelling most of the way shut with the pupil diverging off to one side….similar to how the right eye was about a month ago after he got admitted to the hospital.

We upped the steroids and today it is slightly better.

His platelets are only 4,000……..his teeth have had some bleeding, and he has black and blue marks all over his left side where the clamps on his IV line are….he must be rolling over them at night, and the low platelets are instantly causing marks. We are slated to get two bags of platelets tomorrow at the local hospital, so hopefully that will improve his quality of life for a few days. His HGB is also low, but not so much that he needs a transfusion tomorrow. We will keep an eye on that.

My brothers came in for the weekend, along with Rebecca’s brother and his wife………my folks also came down Sat. and Sun………having family around was good for all three of us. In addition to the family visitors we had a bunch of friends showing up throughout the day. I don’t know how Rebecca and I would be getting through this without the support of our friends and family. Having people around to keep Zachary company and to visit with us is the best medicine that I can envision right now. I know some families would rather spend their time quietly without all of the chaos, but we are NOT in that place right now.

I have had many emails and phone inquiries regarding Zachary’s state of mind and how he is taking all of this. I thought that I had properly addressed this, but just in case I didn’t adequately convey our collective states of mind, allow me a few moments here to clarify any confusion as to “where” we are and WHY we are there.

Before leaving the hospital last weekend, Zachary had some private time with his oncologist, one of his nurses, and our child life specialist. During that “meeting”, the doctor let Zachary know that there were no other treatment options for him and that we were going to be taking him home. I wasn’t in the room, but my understanding is that no one actually said, “Hey Zachary…..you’re dying!” From everything that we have learned about this process, it is anything but standardized. Parents, friends and care-givers need to take many of their cues from the patient, letting them dictate the timing and content for discussions regarding the many issues that the patient will be facing. From what I have heard, Zachary didn’t ask a lot of questions during that meeting. Maybe he wasn’t ready for those discussions.

Rebecca and I have been with him non-stop since he was diagnosed. We NEVER left him alone in a hospital….we never left him alone at night. We have ALWAYS been there. We feel that maybe we know our son. I’m sure that some of the well-meaning folks out there who have been raining advice down upon us know him better than us, BUT, Rebecca and I are going to go ahead and be stubborn about it and do things our way. We see NO reason to be “forcing” Zachary into dealing with more than he wants to or is able to deal with right now. With the high doses of pain killers that he is taking, he tends to forget things rather quickly, so he may have already erased those conversations with the doctor from his mind.

If ignorance is bliss……….we are OK letting him be blissful!

If he still needs to hold onto the hope that he might beat this monster, then Rebecca and I are NOT going to rob that from him.

If he still wants to speak about his dreams for his future, months and years from now, then we will NOT burst his bubble just to satisfy those who feel it is our “duty” to let him know what is going on.

Zachary is an amazing young man. I have more respect and admiration for him than I do for anyone who I have ever met. He has endured countless treatments and setbacks that would have discouraged and destroyed lesser men. After nine years of putting up with everything that conventional and non-conventional medicine could throw at him, we believe that he deserves to NOT be tortured by any thoughts or demons that he is not yet ready to face. And if he never has to face those demons……that is fine with us. If he goes to sleep one night…..thinking about all of the great things that he will be doing the next day……..and then passes in his sleep……..without ever having to deal with the enormity of how unfair all of this is…..well that would be OK with us.

It breaks my heart to write journal entries like this where I have to face the harsh reality that we are losing him. Zachary is playing video games with two of his friends while I type this, and one of them has caught me crying twice…..I had to use the old “pepper in my eye” excuse…but I don’t think he was buying it.

I know that all of you mean well, and that there is no malicious attempt to make Zachary miserable, but please respect our desire to keep him pain free, both physically and mentally.

In case any of you are worried that our situation may be changing day to day, I am pleased to write that Zachary is still enjoying company and visitors. The distraction of having friends over is priceless. I promise that if things get to the point where it is no longer helpful, I will let everyone know. Believe it or not, I will NOT be shy about my feelings or our desires. (I know….it’s hard to believe, but I’ll try to come out of my shell to express myself a little bit more on here.)

Scott

Saturday, December 13, 2008 8:05 PM CST

I know that I haven’t updated since Monday, but it has been a trying week for us. While we are very appreciative of everything that hospice is doing for us, they seem to have a long way to go before families will be able to say, “The hospice process was a smooth one for our child.”

At this point in our saga, I feel it is best for me to focus on Zachary and Rebecca, and NOT let loose on agencies that we are heavily relying on. At some point, when this is all over, I will do everything within my power to help ensure that some of our experiences will NEVER be encountered by ANY family EVER!

Losing your child is tough enough without the added stress of sub-par medical care. (Enough said about that for now.)

Zachary has been enjoying the parade of visitors who have been spending time with us all week. He sleeps a lot, but when he is awake, he watches TV or plays video games with his friends. When he gets too tired, he lets us know.

Watching him deteriorate each and every day is excruciating for us. He can barely stand or walk….he needs the wheel chair when he goes out. (He has only left the house twice since getting home.) I don’t remember if I already wrote about it, but earlier this week Zachary fell on the tile floor. He was trying to walk with his IV pole, and he must have lost his balance. He hit the ground hard and was immediately crying. Thankfully he did no real damage, and within minutes he was fine. We now ALWAYS have someone walking with him when he maneuvers around the house. Between the pain pump and the tubing, it is too easy for him to trip and hurt himself.

I am WAY too tired to list everyone who has come to visit with Zachary. Please do NOT interpret this as a lack of appreciation on our part. We are extremely grateful for all of the visitors. Zachary loves the company and it gives Rebecca and me a chance to visit and relax while he has friends in with him.

The one comical thing that happened this week came in the form of a phone message that I received on my cell phone. (I saved it, maybe I’ll figure out how to put it on here so you all can hear it.) The message basically goes like this:

“Hi Mr. Finestone my name is Ms. Clueless from Cigna insurance. I have been away on leave, but I just got back and as your case manager (this was news to us), I was informed of Zachary’s recent move from the hospital to hospice at home. We want to make sure that if you or your family needs anything, please do not hesitate to call me at (insert worthless phone number here.)” (In the background I could hear celebrating and partying going on……..they must be ecstatic that they won’t have us around for too much longer.)

As always……I couldn’t make this stuff up if I tried. After nine years of doing nothing but making our lives miserable, they are suddenly worried about us………..riiiiiiiiiiiiiiiiiiiiiiiight.

Life sucks right now. Make no mistake about that. I am not prepared to lose my son. I am not prepared to let him go. Seeing him in pain is torture for me. Seeing him lose weight is torture for me. Seeing him barely able to stand so that he can pee in a urinal is torture for me.

I need to find a way to stop time so that we can keep him with us, without having him uncomfortable.

I have written too many times over the years about how much cancer sucks.

I wasn’t even scratching the surface with those comments.

Scott

Monday, December 8, 2008 8:49 PM CST

We have now been home for two nights, and if you don’t happen to be one of the 38,921 folks who have already visited us, then I guess this update will be relevant. (We LOVE the visitors…so don’t be offended by that crack.)

Zachary has had some ups and downs since getting home Saturday night. I want to end this update on a good note, so I’ll lay out the ‘downs’ first, then focus on the good stuff.

He has had some persistent fevers that thankfully disappeared today. Unfortunately he developed runny and congested nose/sinuses tonight. The nurse who will be here tomorrow will check him out to see if we need to take any action regarding that. His first night went pretty well, he was only up a couple of times….once to pee, and once to have his sheets changed after he spilled his drink all over the bed. (His coordination is not real sharp…the narcotics have him dozing off while trying to talk, drink, eat, etc……..so we really have to keep an eye on him. He tries to get up on his own, which scares the crap out of me. I have told him in no uncertain terms that he needs to call for help if he wants to get up. (The last thing we need is a broken hip/leg.) His second night didn’t go as well as the first….he had a fair amount of pain, so Rebecca ended up spending most of the night in bed with him. Thankfully the recliner that I ordered yesterday arrived today. Now one of us can sleep right next to him in the room and still be somewhat comfortable…..and when his friends come over to visit….first one in the door gets the comfy chair. (Although when I got home from work today, he was in the new chair and two of his friends were in his bed.)

There are so many emotions and thoughts swirling around in my head that it has become very difficult to focus on “regular” activities. I did pretty well at work today, but one of the unfortunate things that snaps me back into reality is the music being interrupted every 10 minutes or so to announce: “Don’t take for granted the fact that you have healthy children….donate to St. Jude’s research hospital.” (Don’t get me wrong, St. Jude’s does some great research, even in neuroblastoma, but hearing it definitely triggers thoughts that I’d rather avoid while at work.) In the “old” days, before we got on hospice, any cold, ache, or pain would have us cringing and wondering…..”Is this the disease coming back?” Now, in our new situation…..a runny nose, increased pain, jaundiced appearance…….all have us wondering, “Is the disease accelerating…..are we looking at days instead of weeks, or months?”

He sleeps with the oxygen on, to make sure his stats don’t drop too low….and he is also now getting IV fluids at night, because he hasn’t been drinking enough during the day. His appetite is way off, and we are worried that he is losing weight again……we will be working on that tomorrow.

I don’t imagine that things will get any easier. I guess that’s the point of hospice…………if it was fun, EVERYONE would want to take advantage of their services.

Now onto some better news. Saturday night, after getting home from the hospital, Zachary got both of his ears pierced with diamond studs. One of his nurses brought her son over who does ears, and he got Zachary all set up and looking good.

Last night, our friends Bruce and Chris whose son Tanner and Kyle are also fighting cancer brought over Matt from Mighty Mike’s Tattoos in Port St. Luce. Apparently there has been some conspiring going on behind my back. Zachary has been asking for a tattoo for quite some time. I pretty much have ignored that nonsensical talk and went about my business. BUT, while I was innocently trying to keep my family safe and protected from the EVILS of those who wear tattoos, several enemies of the state were out there plotting against me. In the interest of protecting those who have NOT been formally charged with any crimes, I will (as I always do) change the names to protect the guilty. (Usually you would use the word ‘innocent’ in place of ‘guilty’, but we all know I’m right, and everyone else is wrong….so why bother with pleasantries?) So, back to the conspirators.

Let’s see……I always seem to botch this part of the journal update, and I end up giving away TOO much of a hint as to WHO the ‘bad’ guys are. I think that I have finally come up with a system that will keep ANYONE from cracking my highly technical cipher.

I will change Rebecca’s name to Chris, Chris’s name to Bruce, Bruce’s name to Audra, Audra’s name to Teri, Teri’s name to Heather, and Heather’s name to Rebecca. THAT WAY…you’ll never be able to figure out that Rebecca, Chris, Bruce, Audra, Teri and Heather were all working behind my back to keep the seed of deceit and tattooism (not a word….but it fits) planted firmly in young, impressionable, Zachary’s mind. Not only did this group of miscreants keep prodding Zachary to ask for a tattoo, but they were showing him designs, and working out the details for him to get MULTIPLE tattoos.

The four designs that he wanted were:

1). The Japanese symbol for “pain.”
2). The Japanese symbol for “love.”
3). The Japanese circles representing reincarnation.
4). A cross.

I convinced him to try one tattoo, to make sure he could endure the pain….so he started with #1 on his list, and last night, in his room, he got his Japanese symbol for “pain.”

Now, as everyone already knows, having a tattoo is only fun if you get to impress other people with it……..and who better to impress than a large group of high school girls who marched into his bedroom tonight wearing short shorts, to sing him Christmas Carols. Two of Zachary’s friends (Brandyn and Blake) were over, and they were looking at Zachary with stares that said, “You’re hogging all of these pretty girls to yourself!”

Before any of you start to ask the obvious question…..when you finish reading the update….make your way over to the photo album and you can check out, the earrings, the tattoo, and the group of girls who posed for a photo with young Zachary.

(Don’t worry; I made the moms who escorted the girls, count heads as they were leaving to make sure he didn’t hide one in his closet. We wouldn’t want him fulfilling that one wish from his bucket list with one of his school mates…..especially after their parents were kind enough to bring them over to entertain him.)

We have had several friends and acquaintances ask whether or not we have a bank account set up in Zachary’s name for folks wanting to make donations to help us with expenses. We have had so many wonderful people arranging dinners, running errands, and looking out for us, that we really hadn’t thought about having a bank account for that, like we did when he was first diagnosed. We certainly are NOT asking for anyone to give us money. In fact, I won’t even include the information here on the page. If you are interested in getting the account number for Zachary’s savings account, I will provide that for you. I have emailed it to the folks who have been asking us for it, so if you want it, just send us an email and I will give it to you. (srfinestone@hotmail.com)

Check out the photos, and pray that we get some quality time before things get worse.

Scott

Saturday, December 6, 2008 11:37 PM CST

For some unknown reason, the hospital lost internet coverage for their patients using Wi-Fi and we have been unable to get online since Thursday when I last updated.

Since our meeting with hospice and the staff from the hospital, a lot has happened. For once, I am going to take the high road and avoid writing an update that includes any tirades when I KNOW that my feelings are greatly influenced by not only the events that I want to write about, but also by our medical situation as well. (In other words, don’t look for any trash talk until I calm down a little bit.)

Zachary got released today as scheduled, and somehow I convinced myself that it was “my turn” to ride in the ambulance with him. The last time that he rode in one was two summers ago in Tennessee when we were on vacation and he got sick. Rebecca got to ride with him that time, so I figured it was my turn. (I chose poorly.)

By not riding with Zachary, Rebecca got to leave the hospital early with a car load of goodies that our friend Benjy purchased for us. She got home and met the hospice intake folks and began the not-so-fun task of waiting for us to arrive.

I on the other hand got to be with Zachary when the nurses were saying their final goodbyes, and then I got to sit in the ambulance and reflect on the fact that I was taking my son home to die. (Don’t worry, I walked behind his gurney at the hospital so he wouldn’t see me crying and he had his eye coverings on in the ambulance, so he couldn’t see my tears there either.)

I keep waiting for this all to be some sort of long-running nightmare that I will get to wake up from and put behind me. Apparently that is NOT going to happen.

We got Zachary settled in fairly well. He loves his room, and how it has been rearranged. The Flutie’s brought over dinner (which was great) and we had several friends show up to offer their support. Zachary’s good friends Brandyn and Kristyn both stayed over for several hours and kept him company. His fever spiked again tonight, so we are once again having to deal with that dilemma…….Tylenol to control the fever but possibly damaging the liver further, or let the fever burn and lose platelets. Crap, crap, crap.

His oxygen machine is doing its thing, so he should be OK through the night, and the pain meds seem to still be doing a pretty good job. The ambulance gurney has a very stiff mattress that made him extremely uncomfortable, but I am hopeful that once he gets to sleep, that will all be forgotten.

He is on a ton of medicines now, mostly by mouth. Rebecca and I made up a chart on Excel to keep track of it all. We are also logging his fevers, just so we have the information available.

Speaking of fevers, the MIBG scan results showed vast amounts of disease progression in the bones, which can easily account for the fevers that he has been having. Thankfully his liver and other organs have yet to show signs of lighting up. He is still jaundiced, but most of his liver functions are normal. The one that has been fluctuating up and down is very high right now. Other than the yellow skin and eyes, it doesn’t seem to be causing him any discomfort.

In my last journal update I forgot to mention that during our meeting with the doctor and hospital staff someone brought up Zachary’s bucket list. The doctor hadn’t heard about it and asked what was on it. Rebecca obliged and told her about the many things, including the earrings and tattoos that Zachary has wanted for quite some time. The doctor looked at us and said, “I see no reason why he can’t get those things. I’ll bump up his platelets before we discharge him, so if you can arrange it so that it happens in the next few days, he should be fine.”

So, tonight after we got home, one of Zachary’s nurses from Palms West had her son come up and use his earring tool to give Zachary one diamond earring in each ear. They used the cream that numbs the skin, and he never even flinched.

Tomorrow he is scheduled to get at least one of the FOUR tattoos that he is asking for. (I am hoping that once he feels how painful they are, he will stop at one.)

I will put some pictures up on here once he gets the tattoo, that way you can see the earrings and the ink!

Thank you to everyone who has offered up ideas on the web cam thing. Rebecca was actually playing around with it tonight, and I think she found a site that she liked. I still haven’t had a chance to go online with it (as I wrote, the hospital had no internet from the time that I purchased the camera until we left), but now that we are home I’m sure we will put it to good use.

As I wrote on Thursday, I am sure that many of you are wondering if we have any more information or thoughts on how long Zachary has. I truly do not know. When he is alert, talking and interacting with his friends, it feels like we may get several weeks of quality time. When his fever spikes and I see how yellow his eyes and skin are, I panic that we may only be getting days. I don’t know if knowing would even be a good thing at this point. Since getting diagnosed, and especially since relapse in February of 2002, we have lived our lives in a completely different manner than we had before. We strive to get the most out of our hours/days/weeks. We don’t always succeed, but more often than not, we find a way to give Zachary some wonderful experiences.

By far though, the friendships that we have been blessed with are the most treasured thing that we have. I believe that our support system is strong, I believe that the coming days/weeks will be emotional, tortuous and unbearable…..and I believe that our family and friends will be there to help wipe away the tears and pick us up when we are down.

One of Clint Eastwood’s best lines from the Dirty Harry movies was:

“A man’s GOT to know his limitations!”

Rebecca and I know ours…….we’re emotionally spent already, and we just got him home today. If we’re not calling you for support, it’s not because we’re strong or stubborn, just stupid!

Love to all,

Scott

Thursday, December 4, 2008 10:32 PM CST

Aside from diagnosis day back in March of 2000, this has been the most difficult day that we have had to face since starting the battle against the suck fest that IS………..cancer.

I promised scan results tonight, but I will not be able follow thru on that promise. The isotope that was supposed to be injected yesterday, failed. (You may recall from many years ago me writing about failing isotopes, and how I was wondering if that meant that the isotope didn’t study enough for the test, or if it was just plain stupid.) Anyway, it failed, so he got the injection today and tomorrow he will have the scan. Unfortunately, we are convinced that the scan itself is now just a formality. We had a meeting today with our doctor, two of Zachary’s oncology nurses, the case manager, the head of the oncology support group, and the hospice nurse. My parents were also there to support Rebecca and me.

The consensus is that we have reached the end of treatment options for Zachary. His pain has escalated to the point where he is now on a PCA pump to give him 24hr/day narcotic relief. He also has the button that he can push several times each hour to get additional meds. The added narcotics made him groggier, but they also have given him some much needed relief from the pain. Zachary and I didn’t sleep well last night; he had pain that kept him awake from 2am until about 10am when they started him on the pump. We ended up taking a nap after lunch, and after that he was awake enough to take a short walk down the hall and then sit and send text messages to his friends.

Tomorrow the hospital staff and the hospice coordinator will be working to have a hospital bed, IV pole, pump, etc all delivered to our house. The plan is to have him discharged on Saturday into the care of hospice at home. No one can predict how long we have left. It isn’t even a fair question to ask. Our main priority now is pain management. After that, we are going to try and give him as much quality time as possible.

We do not know how any of this is going to pan out. We do have faith in the hospice program and their ability to facilitate Zachary being at home with us in a comfortable state.

After the meeting at the hospital, the doctor, one of Zachary’s nurses and the friend who runs the charity that provides support services for families, all went in and spoke with Zachary. The narcotics had him pretty groggy, but they did explain that they no longer have a treatment plan to offer him. He already knew that we were planning on bringing him home, and he was accepting of the hospital bed in his room, because he knows how difficult it is for him to sit up without the electronic controls.

I know that this journal entry is NOT what everyone wanted or expected. Zachary has amazed all of us over the years with his uncanny ability to defy the odds and beat the system. There are probably a million and one questions that many of you are wanting to ask…..about everything from tests to scans to alternative treatments. If you have followed our story for any length of time, then you already know that Rebecca and I have moved mountains to get Zachary the treatments that he needed to keep fighting this disease. Now we are moving those same mountains to fight his pain. He has endured treatments, surgeries, procedures, needles, poking, prodding and pain for too many years for us to now let him down by allowing his pain to continue.

Moving forward, there are many of you who have been kind enough to offer everything from meals, to treats for Zachary, to spa treatments for Rebecca, and even a Lamborghini for me. (OK…maybe I made up the part about the Lamborghini, but you never know who’s reading these things, and stranger things have happened.)

Our good friends, Jennifer and Susan have been working together to coordinate meals for us once we get home. They have a plan, and I am a firm believer in plans. So, if you are within 3,482 miles of Jensen Beach, and you want to join that effort, please email/contact us and I will get you their contact information so that you can join the list of wonderful friends who are making that effort.

As for the rest of you….I never liked you anyway. Only kidding. Actually I am going to give all of you the same directive that I gave my own brothers who live quite far away. Anyone (Yes ANYONE) who is interested in visiting with/seeing Zachary once he is home has an open invitation to do so. (If you are sick, please refrain from exposing him/us to your cooties.) I used to say that there is never a “good” time to get diagnosed with cancer….well, in keeping with that logic; I’m guessing that December is probably NOT a good month to possibly be ending a journey. Travel can be expensive and/or impossible. People have family functions that they are committed to…..etc. If you live nearby and are a friend of Zachary’s please don’t hesitate to come and visit. If you live further away and don’t think you will be able to come down until……well…..UNTIL….then that is fine too. We are eternally grateful for all of the support and love that has been pouring into us as we enter this new phase of our battle. We know that we could never have navigated these waters without all of you out there rooting for us and keeping us in your thoughts and prayers.

I am relying on our local army of friends to help keep Rebecca sane while I am at work. Our plan is changing daily, but right now we need me working, earning a paycheck. As long as he is stable and not rapidly deteriorating, then I will be trying to maintain my work schedule. Work has actually been a welcome distraction for me; in fact….it’s the ONLY place that I have been getting any real sleep. (Just kidding Steve, [boss] other than those 3 or 15 times that I passed out in the warehouse, I’ve been as sharp as a bowling bowl while watching the helm while you’ve been gone.)

For those of you who live too far to make the trip, my cousin David came up with a good suggestion which was to buy Zachary a webcam for his laptop computer. I ran out today while he was sleeping and got one, and it is all hooked up. So, if you would like to chat with (and see) Zachary, that is now doable. I haven’t figured out where online to go to make that happen, but I’m guessing that there are all sorts of web pages that facilitate that process.

I know there is a ton of information that I am forgetting to include in this update…..frankly I am passing out while typing it. Tomorrow is another day……….we are truly taking it one day at a time right now.

While I am thinking about it, thank you to everyone who was able to make the trip down to WPB to visit with Zachary in the hospital. It is about an hour each way for the folks up here, so we recognize your efforts to helping us with his spirits. I’d also like to thank our WPB guardian angel Benjy who went above and beyond in his efforts to keep Zachary and Rebecca comfortable. From bringing in dinners almost every night, to buying them HUGE soft pillows for the beds and candy to munch on, he has been amazing. He even gave Rebecca a place to stay while I was sleeping with Zachary. (I still can’t figure out how her lipstick ended up on his shirt collar, but that’s another journal entry.) Seriously though, he has helped a lot. All of our cancer families have stepped up and helped us in ways that go beyond words…..making the hospital stay bearable. Thank you, thank you, thank you.

Scott

P.S. Thank you again to Susan and Mike for helping Rebecca to rearrange Zachary’s room to make it ready for the hospital bed and equipment that will be arriving tomorrow.

P.S.S. If I have forgotten anyone for now…..don’t fret….I’m sure you will be doing something else amazing for us that will prompt me to recognize you in a future entry.

P.S.S.S. See…I just reread the entire entry and realized that I hadn’t thanked all of the medical personnel who stayed late today to help explain to us this transition. Some of them have been treating Zachary since his diagnosis, and they have been hit hard by this turn of events too. While I would NEVER recommend to ANYONE that you allow yourself to end up in a room where folks are telling you that your child is going to die, Rebecca and I are grateful for how the staff is working to assist us with the transition to hospice.

Monday, December 1, 2008 11:33 PM CST

Most of you have been following along during this journey of ours for close to nine years so by now you know that I don’t hold back when it comes to these journal entries. (The vacuum cleaner is on high and sucking like mad in case you were wondering.)

I am going to give you the latest news, and then you will be firmly planted in the waiting game along with us. Unlike my usual updates where I make you go through paragraph after paragraph to get to the “juicy” stuff, I will tell you now that we should know a LOT more by Thursday afternoon.

Now that you know that, I can backtrack and give you the details of the last few days.

Zachary’s undiagnosed liver issue has not been resolved. Some of his counts are improving, while others are getting worse. It is dark in the room now (I just got here from work and it is 12am) so I can’t see how yellow he is, but Rebecca says that he has looked jaundiced yesterday and today.

He is still battling a fever of unknown origin that fluctuates throughout the day.

He got platelets and blood yesterday, spiking a 103+ fever during the process, just to keep everyone on their toes.

His weight is now back up to 110 lbs. so they removed the feeding tube today after his CAT scan, and he has been eating really well.

Physical therapy showed up today and got him started on a program that I will learn about tomorrow when we wake up.

Now the potentially bad news. The infectious disease doctor was in today and he pulled Rebecca out of the room to speak with her. From what she told me, he pretty much said that since they can’t find any other cause for the fevers, they believe that it is tumor growth and that he is experiencing tumor fevers. He went on to say that maybe we should consider getting him on hospice and taking him home.

Hmmmmm.

Up until now, the doctors have spent the past two 12 days testing Zachary upside and backwards to try and diagnose the various things that have been vexing us. Up until now, the message we were getting is that they didn’t see anything to make them think that it was the cancer doing this.

The eye got better after taking steroids, but we never figured out what caused it. (FYI - tumors in and around the eye don’t go away after two days of steroids treatments.)

The liver levels have been going up and down every couple of days since Zachary went to Philly. (In case you have forgotten, that was the trip where they told us that his MIBG scans showed improvement and that all of the sites looked much better.) (FYI - If there were a tumor in or around the liver, it would not be getting better and then worse every few days….over and over again.)

One of the other issues that I mentioned in the last journal entry was the fast heart rate. Both the ultrasound and the EKG came up negative for any culprits there, but the cardiologist agreed with us that his heart rate was way too fast. He too is stumped by this and came up with the theory that the cancer is spreading, which can raise a certain level in the body, which can affect the heart rate.

The good news is that there is a test that they can do to determine if his levels of this culprit are too high.

The hilarious news is that you’re NOT going to believe what test they want to do.

(For those of you who have read my book or have been following my journal entries for several years….you’re going to love this.)

They took a random urine sample today to check the HVA/VMA levels.

(Feel free to break out in laughter now….we did.)

Rebecca actually chuckled when the doctor told her. He must have looked at her funny, because she felt compelled to explain that we don’t put a lot of faith in that test. She went on to tell him that the food supplement Zachary has been taking for several days is VANILLA flavored and that he has been eating oranges a lot too. This information didn’t seem to impress the cardiologist, apparently he hadn’t gotten the memo that talks about how certain foods affect those levels and that vanilla and oranges are at the top of that list.

My opinion is that they can have ALL THE DAMN URINE they want. Heck, I’ll take up a collection if it makes them happy. We refuse to put much emphasis on the results of that test. (Too much experience with urine numbers and lab debacles.)

Because of the uncertainty of our situation and the possibility that the cancer is indeed running rampant, we are going to do an MIBG on Wednesday, and we should know something by Thursday afternoon. The isotope shouldn’t adversely affect him, so we might as well get it over with and find out where we stand.

There is no reason to drag him to a different hospital if the cancer is progressing. With all of the other issues, it would just be torture to put him through that. We need to hear that the cancer has yet to rebound from the last treatment so that we can formulate a plan and attack these as yet diagnosed issues….so that we can get back on anti-tumor meds.

I recognize that you folks usually look to me for guidance or insight as to where we stand and what we think is happening. I am truly on the fence this time. Part of me (wishful thinking) wants to believe that this is not cancer related, because of the way it has all presented. The other part of me is worried that I am just in denial over what is happening to our son.

I would say that right now I am about 51% for non-cancer causes and 49% for. By the end of this week, we will either be making arrangements to bring him home, or to travel to another facility where we can get a more “team” approach to solving these mysteries.

I’d flip a coin, but I’m just too tired.

Scott

Friday, November 28, 2008 11:52 PM CST

It is just past midnight on Friday. I got off of work at around 10:15pm, went home to change and grab a couple of things that Zachary wanted from the house, and then headed down to the hospital to relieve Rebecca for the night.

I wish that there was good news to report from today’s procedure, but unfortunately things did not go too well. Apparently while the G.I. doctor was performing the endoscopy he got to the point where he was close to the duct that he wanted to look at and Zachary started to bleed there……..inside his belly. Because of this, the doctor could not complete the test or verify the diagnosis. They have been treating him with a pill that is supposed to help with that disease for a couple of days, so now they are saying, “If it gets better, then we know we were right.” Hmmmm….isn’t that like throwing crap against a wall and hoping that it sticks?

After returning to the room from the botched procedure, someone noticed that Zachary’s port was bleeding around the needle area. In case you missed one of my many online port classes:

Ports 101
Ports and bandages 102
Ports and needles 103
Ports - A beginners guide to accessing
Ports - How to avoid tripping over your I.V. line
Ports - Good ports don’t leak!!!!!

That last one is relevant for today’s adventure. From what Rebecca told me, they never did give her a definitive explanation as to why it was leaking…..they are guessing that it may have gotten bumped or jostled when they were transferring him between beds for the procedure this morning. The nurses re-bandaged his port and made sure that it was working well.

Last night was Zachary’s first on the new mix of pain meds. (We saw the pain mgt. doctor who showed up at around 9:30pm last night.) He added a sleeping pill to try and give Zachary more quality rest at night, and he tweaked out the pain med schedule. From what Rebecca told me today, Zachary slept most of the day, so at least he wasn’t in pain….but he is not up enough to be eating, so we are losing ground on that front.

Last night he developed a fever again (101.5), so they had to start giving him Tylenol again, even though it can damage a vulnerable liver. The infectious disease doctor was in today and decided to keep Zachary on antibiotics for another week, because of the fever. Tonight it was still up around 101.

They brought him in a computerized air mattress bed that automatically adjusts whenever he moves to provide him with the optimal amount of support and comfort. Hopefully that will help prevent any bed sores from developing.

Zachary’s spirits have taken a huge hit over the past few days. He sneezed yesterday and blew his ng tube out of his nose. He tried to negotiate a deal where they would leave it out, but while he was under for the procedure this morning, they put a new one in. The bleed in his belly has left him with some right/rear quadrant pain that the doctor said “should” resolve itself within 24 - 48 hours.

At rest, Zachary’s heart rate ranges from 120 -135, and if he stands up to pee, (which he needs help doing) it jumps up to between 170 - 190. His heart is having to work WAY too hard. We will be addressing this with his doctor in the morning.

His normal heart rate at rest is between 65 - 75, so this is freaking us out a WHOLE BUNCH.

Zachary’s platelets have continued their freefall, indicating to us that the stem cells have more than likely not worked this time. He only has 1,000,000 left, no where near enough to kick start his immune system.

Overall, Rebecca and I are scared shitless right now. The good news from Philly regarding the improvement with his cancer seems like a lifetime ago. A week ago we were hoping to still be able to get him up to Philly to prepare for the next treatment. (That trip was supposed to start tomorrow and has obviously been cancelled.) Now we are praying that we will be able to get him out of this hospital healthy enough to enjoy some more quality life.

We have the following obstacles:

1). Over 20 lbs. lost in the past 4 weeks.
2). A fever of unknown origin.
3). A liver ailment of unknown origin.
4). An eye/head issue (cured for now) of unknown origin.
5). Pain issues that require heavy narcotics.
6). A complete loss of appetite.
7). A broken spirit.
8). A platelet dependant patient.
9). A ticking clock that the cancer won’t wait on.

The ONLY good thing that happened today was the nurses finding a real hospital bed for Rebecca to have in Zachary’s room. (I actually get it tonight.)

Tomorrow is another day…….I will speak with the doctor and try to ascertain whether or not we are fighting a losing battle. There are tough questions that need to be asked……should we be at a larger facility where there are “teams” of doctors instead of single specialists who rotate through several hospitals? Should we be at home just keeping him comfortable and not making him go through all of these procedures and tests?

I could go on….but I think that you get the idea.

Scott

P.S. Anyone who would like to visit has an open invitation. Zachary sleeps a lot, but he has been enjoying visits from friends. You all have our cell phones, one of is always here, so don’t be shy if you can get over this way.

Wednesday, November 26, 2008 7:39 PM CST

Well, here we are, another day in the hospital…….but today I do have a potential diagnosis for one of our ailments. The latest scan that was performed has revealed what they believe is:

Sclerosing cholangitis - a liver disease affecting the bile ducts.

I would recommend Googling it…..(those people need to send me a commission check for all of the referrals that I have been sending them)…….but if you are too lazy to look it up, basically it sounds like an inflammation of the ducts coming out of the liver. It can be caused by an infection, medicines, or just plain old good luck. It is most commonly found in men, with a mean age of 40. The incident rate is 3 in 100,000. Because of that, they brought in an adult GI specialist today …apparently the pediatric GI doctor doesn’t see too many 40 year old men. (Who’d have thought?)

This Friday they will do an endoscopy on Zachary to confirm the diagnosis. If it is indeed that long unpronounceable medical term that I wrote earlier, then I believe the treatment is a pill taken twice daily which can help control the problem. I do not know if it is curable, (the online information wasn’t too encouraging on that front), but for now, controlling it would be a good thing.

Zachary’s eye is no longer swollen, which is good, but they still have no clear idea as to what caused the incredible swelling that he experienced.

Zachary’s platelets are dropping again, a sign that his bone marrow has yet to respond to the stem cells from several weeks ago.

The hospital nutritionist informed Rebecca today that they will not be taking the feeding tube out until Zachary gets back up to at least 110lbs. He now weighs 102. They are guessing that it will take until the end of the year for him to gain back that weight.

(I’m just full of good news tonight….aren’t I?)

I got here to the hospital at around dinner time, so Rebecca left to spend the night with a friend. Tomorrow I am off of work, so I told her to take as much of the day as she wants to relax.

I wish that I could be here Friday for the procedure, but someone has got to pay the bills…………..and slay the dragon.

Scott

P.S. Our fried turkey will have to wait. WHEN we get out of here, we WILL be frying a turkey…..everyone is invited. EVERYONE!

Tuesday, November 25, 2008 10:18 AM CST

Today is my day off and I am currently fulfilling my fatherly duties by spending the day at the hospital with Zachary and Rebecca. I arrived this morning just in time to participate in the morning rounds with our oncologist. (At this point in our saga I shouldn’t even have to write this, BUT…..there is good news and bad news.)

The good news is that Zachary looks better than he did over the past few days. His eye is less swollen than it was yesterday and he has very little pain in it. He ate a fair amount of food yesterday, so we may be getting closer to removing the ng tube.

Now for the bad news. His liver function tests which were improving on Sunday are once again going in the WRONG direction. The doctors have performed virtually every test known to man and they cannot seem to find a culprit for this phenomenon. In addition to not knowing what is causing that problem, we have now learned that the MRI that was done the other day that led to the pseudo tumor cerebri diagnosis has now been thrown out of the window. Apparently the radiologist now feels that the metal plate in Zachary’s mouth that is being used to support the front teeth where he had the root canal problems may have caused issues with the MRI and led to the imaging not being accurate. So, the bottom line there is that we do NOT know what caused the swelling or the intense pain that he endured for so long. We don’t even know for sure whether or not the steroids were our saving grace. It certainly seems logical that the steroids helped, but there is no way of knowing for sure since he is getting several different medicines. For now, the doctor has removed one of the drugs that he has been taking for quite some time. Apparently there is a slight chance that the one med can cause liver issues. He has been on it for quite some time and never had problems before, but maybe it has a cumulative effect…….who knows?

Because of the uncertainty with his liver and the lack of a diagnosis on his eye/pain problem we will NOT be going to Philly this Sunday. Our local doctor is working with our northern doctor to try and come up with a plan of action. Rebecca and I are obviously concerned about going for too long without having him on some type of anti-tumor therapy, but we recognize that we need to get him healthy first. The dietician came in today and we weighed Zachary. He has gained back a few pounds, he was 102 yesterday and he is now 106. Some of that is from the food that he has been eating and some is from the fluids. MOST of it is probably from the fact that he hasn’t pooped since April of 1982. (Actually it has been a about seven days since his last movement.) They gave him magnesium citrate through his ng tube last night, but it only produced some gas. So today we will be repeating that treatment in an attempt to get things moving. The doctor also asked that we get him up and out of bed to walk around a little bit today. Walking can also help get the bowels moving.

On Sunday Rebecca mentioned to our doctor that Zachary has been complaining about how the veins in his arms and hands are getting beaten up by all of the needles. The doctor called our surgeon and we were told that we would have a consult Monday morning. Monday morning rolled around and the surgery transport folks showed up and took us down to prep for surgery. The doctor met us down there and within 1.5 hours of talking to him, Zachary had a new shiny port placed back on the upper left side of his chest. There was some concern that he may have scar tissue in that area from the last port that would have required the surgeon to thread the line up into the neck, but things worked out OK and they didn’t have to do that. Zachary recovered pretty well after the surgery and didn’t complain too much about the pain from the surgery. Today he is a little bit sore, but he was very pleased when they drew blood early this morning and didn’t have to stick him in his hand again.

His spirits are improved from when he was admitted last week, but obviously he would like to be out of here and feeling better.

The bone scan from yesterday showed no cancerous issues in or around the eyes/skull that would be causing the increased pressure/swelling/pain. As I mentioned before, there have been no cancerous culprits found in the belly to account for the liver problems either. We are fighting an enemy who remains well hidden and cloaked in a mask of deceit and darkness.

SHOW YOURSELF TO US….FACE US IN BATTLE LIKE A TRUE WARRIOR, NOT LIKE SOME COWARD WHO HIDES IN THE SHADOWS!

(Speaking to unknown medical ailments via a journal entry MAY be a sign of insanity……..I’m not saying that I’m crazy….I’m just saying!)

The biggest tragedy in this whole scenario is the uncertainty of when exactly I am going to get to cook my Cajun fried turkey this year. My body can only go for so long without the annual nourishment that I get from turkey day. (My mouth is actually watering as I am typing this….thinking about how good my fried turkey tastes.)

I am off on Thursday…..so I could stay home and cook one up for myself…..but I’m guessing that leaving Zachary and Rebecca alone in the hospital while I sit at home, eating fried turkey and watching football games might slightly diminish my chances of winning the Father of the Year award that I have been gunning for.

Like all important decisions that I make, I’ll just have to flip a coin tomorrow to help me decide on what to do.

Scott

Sunday, November 23, 2008 9:55 AM CST

There have been many times in the past when I have compared our adventure with cancer as a roller coaster……..all of the ups and downs. While reflecting over the past couple of weeks, it has dawned on me that the analogy of a roller coaster is probably not a fair or accurate one. I have ridden on many roller coasters, and while they do tend to have dramatic ups and downs, they ALWAYS include portions that are somewhat level and less dramatic.

Our adventure, especially as of late, has had NO periods of calm. It has either been really, really low, or amazingly high.

So from now on, we will compare this adventure to a Yo-Yo….it is either up, or down. (Wait…….when you do tricks, like “walk the dog” the Yo-Yo stays down………so that doesn’t work either.) How about we say that fighting cancer is like a bottle rocket………no…that’s just stupid, hang on…give me a minute to think here.

OK….here goes nothing.

“Cancer is like a vacuum cleaner. When it is doing its thing properly, it sucks BIG TIME………and when it isn’t working properly, it STILL sucks, only not as much.”

In my last journal entry I painted a pretty bleak picture. Zachary was not eating, the ng tube had been put in, the pain in his eye and head was unbearable to the point where he hadn’t touched his phone in three days and couldn’t even watch movies or TV, his stem cells had not kicked in….resulting in low counts and continual transfusions throughout the week, and we were resigned to the fact that there was no way he would be healthy enough to travel to Philly a week from today to get started on the next treatment phase.

All of that looked bad….and then Saturday morning they got worse. (Things got much better later in the day, so don’t panic…..but my brain only works in chronological order, so you’ll have to wade through the vomit to get to the roses.)

I had stayed with Zachary Friday night, because I didn’t need to be at work until 2pm on Saturday. Saturday morning Zachary’s doctor arrived at the same time the G.I. doctor was visiting. I had many questions for them, and not being the shy one, I started playing doctor.

Me: “If the swelling and pain in the eye are from an infection, doesn’t it seem odd that he had the pain for several days BEFORE getting admitted on Wednesday, he was then on antibiotics for a day and a half, and THEN his eye swelled shut? Why would it be getting worse on the antibiotics?”

Doctor: “That sounds logical, but Zachary has always presented with odd symptoms and issues. We have the infectious disease doctor coming in today to review the drugs we’re using and to examine the eye. We’ll see what he thinks.”

Me: “OK. Also, is it just me, or does he look yellow again? I can’t see his eyes because he keeps them covered, but his skin looks yellow.”

Doctor: “Yes. His liver levels in his blood are elevated again. He is jaundiced. The ultrasound from last night did not show any gall stones, so today we are going to bring in a nuclear medicine guy to perform a special test to see what is going on in his belly.”

Me: “OK.”

The G.I. doctor reiterated that the ultrasound had not shown any stones in the gall bladder. He said that there can be swelling or inflammation of the walls on one of the ducts that can cause the patient to become jaundiced. The nuke med test might help them figure it out.

I left for home at around 11:30am to get ready for work not feeling too great about life in general. Seeing Zachary in pain and unable to function SUCKS.

Yesterday afternoon Rebecca called me to let me know how the visit with the infectious disease doctor went, and this is where things started to turn around for us. He told Rebecca that in his opinion, an eye infection was at the bottom of his list for culprits. He had another radiologist review the special eye test that was performed on Friday, and he believes that Zachary might have a pseudotumor cerebri. You can Google it if you get bored. But the short definition is this:

[Pseudotumor cerebri, also known as idiopathic intracranial hypertension (IIH) a disorder of unknown etiology. It affects predominantly obese women of childbearing age. The primary problem is chronically elevated intracranial pressure (ICP), and the most important neurologic manifestation is papilledema, which may lead to progressive optic atrophy and blindness.]

Basically it is increased pressure behind the eye that mimics a tumor (pseudo) and can cause extreme pain. It can be treated with anti-inflammatory medicines. (Steroids). Sometimes it requires radiation to the area that is causing the problem.

Hmmmm….don’t steroids make you hungry too?

Ahhhhhh…they don’t usually like using steroids for this because it usually affects obese women.

(Just a reminder to everyone who has NOT been paying attention – Zachary is NOT an obese woman.)

Actually to be more specific, he is neither a woman NOR an obese person.

They started him on steroids at approximately 3pm. They also added an antifungal medicine to the antibiotic, just in case the eye problem was something else.

The one downer for the day was that he vomited when they injected the contrast into him for the special scan that they were doing to look at his belly for culprits for the yellowing.

When I spoke with Rebecca at about 6:30pm, Zachary had finished off about ¾ of a portion of fettuccini alfredo that our good friend Benjy had brought in for him. In addition to that revelation, he was now sitting up and had “hi-jacked” the computer from Rebecca. He was also sending text messages to his friends.

Before yesterday afternoon, Zachary would wince in pain every time the doctors made him move his right eye around. They would open it gingerly to make sure he could still move it, but the pain was intense.

Now he is using a laptop and sending text messages on his phone, using his good eye. AND, unless he has lizard blood in his veins, you can’t move one eye without moving the other, so I’m guessing that the pain that was there is gone….or at least a whole lot better.

Hmmmm…..rather curious. The only things we’ve changed were adding the steroid and the antifungal, and now all of a sudden he is showing improvement….rather curious indeed. (I think steroids produce quicker results than antifungal meds do, but I missed that class at medical school, I was away at a ping-pong tournament.)

This morning’s report included the news that his liver function test has come down considerably from yesterday. Also, his eye is not quite as swollen as it was yesterday.

So….where does this leave us?

1). It would seem that the infectious disease doctor has more than redeemed himself from the debacle we had with him many, many years ago. Apparently he must read minds or follow my journal entries, because he was obviously following MY train of thought regarding how the eye did NOT present like a typical infection. (Or he is just smart, like me.) 

2). The side-effect of the steroids that causes hunger is quite obviously a VERY good thing. If Zachary is eating, he is gaining weight, getting stronger, better equipped to fight illness, and feeling better all the way around.

3). If the jaundice/liver problem was indeed caused by an inflamed duct wall, then my guess is that the steroids may have helped us out on that front as well. It is still entirely possible that there is some other obstruction that is coming and going, (I never finished the course on biliary duct disease…..I was away at a coed naked underwater ballet class.)

4). If Zachary continues to improve and keeps on eating, I’m hoping that they won’t have to send him home with the ng tube in.

5). The other issue that has come up is the beating that the veins in his arms are taking. Rebecca spoke with the doctor today, and they are going to have the surgeon come in to discuss possibly placing a new (third) port in him to facilitate the many, many blood draws/transfusions that he has been needing. If they do that surgery this week, I am hoping that it will be Tuesday so that I can be there.

I will be going to down to visit him tomorrow before work, so hopefully I will get to see him up and feeling better. Today he is getting a couple of visitors from the bowling alley. Michelle and Brandyn are going down to see him.

Scott

P.S. The odds of getting pseudotumor cerebri are about 1 in 100,000. (Probably less when you factor in that mostly obese women get them.) It's like winning the lottery, only without all of the money and fame, and it sucks!

Friday, November 21, 2008 11:18 PM CST

It is now 11:45pm on Friday night. As I wrote in my last entry, Zachary got admitted to the hospital Wednesday night. By the time they arrived in the E.R., his temperature had returned to normal. (Of course…nothing like making us look like idiots.) The pain in his head and behind his eye became quite intense, and after being there for an hour or so, his fever returned with a vengeance. They didn’t get him up to a room until just after midnight on Wednesday. Thursday wasn’t quite as productive as we would have liked. The E.R. had prescribed Tylenol #4 for the pain, and unfortunately we have found that it is NOT an effective drug for managing his pain. So most of Thursday was not fun for him. The G.I. doctor didn’t make it in yesterday, so his nutrition/weight loss issues had to wait until today. The only specialist who showed up was the neurologist who ordered an MRI to look at the eye and surrounding area for signs of trouble. Today Rebecca was able to flag down one of our old oncology nurses who works here now and she was able to get the pain meds switched to morphine, which we know works better. When Zachary saw the neurologist yesterday, he described the pain in his eye as a pressure that felt like his eye was too big for the socket. This morning, his right eye was swollen shut.

(I may not have completed medical school, but I’m guessing that the condition of his eye has pretty much eliminated any doubt as to how real this pain is.) Zachary’s two favorite things in the world right now are his new cell phone with the qwerty keyboard for texting, and watching movies on his laptop. Since leaving the house Wednesday night he has said that he doesn’t even want his cell phone turned on because it hurts his eye too much to look at it. He has tried to watch a couple of his movies, but he can only go about 10 or 15 minutes before the pain is too intense.

The MRI was completed today and the results were not definitive. The good news is that there is no mass or tumor behind the eye. A pediatric neuro-opthamologist was called in, and he thinks that maybe there is an infection on the eye. Zachary has been on antibiotics since arriving Wednesday night, so they think that they have addressed that issue. My concern is that he was on the antibiotic for 30 hours BEFORE the eye swelled shut. His fever has not gotten any better either. While he was on the Tylenol #4, his fever was under control. I just walked into the room a little while ago, and his temperature is now 102.3!

The G.I. doctor showed up today and ordered an ng tube which was inserted earlier today. They began a feeding schedule of about 4oz every 4 hours. I’m guessing that once they determine that he is tolerating the feedings, they will increase the amount that he is getting.

Zachary had to be sedated for the MRI for the first time in his life. He has always done very well with that test, never moving around or causing problems. This time, when he heard that he needed an MRI, he knew immediately that the noise from the machine would not be bearable. The doctor tried to convince him that he needed to tough it out, and Rebecca told me that when Zachary heard that he started to cry. They ended up compromising and giving him extra morphine and another drug to keep him comfortable. I don’t think they had an anesthesiologist around to put him all the way under. Rebecca said that he got through it OK. After the test they returned to the room and started giving him platelets. His counts have once again dropped to levels which are way too low.

Last night they gave him two units of blood which he definitely needed….he was pale and his counts were very low.

I worked from 10am until 10:30pm today, then drove down (1 hour) so that I could relieve Rebecca for one night. A friend of ours was kind enough to offer up a hot shower and a bedroom for her. He only lives about 10 minutes from here, so that saved us from getting a hotel room. I don’t have to be in to work until 2pm tomorrow, so as long as I leave by 11am or so, I will have enough time to get home, shower, change and head into work.

It’s not an ideal situation………but we’ve always seemed to find a way to make it work. While Rebecca certainly doesn’t like being away with Zachary in a hospital, she is comforted by the fact that I am only a little over an hour away.

Tomorrow we will see the eye specialist again, and I have been told that the pediatric infectious disease doctor will be stopping by. If you aren’t familiar with that doctor, you’ll have to go back to 2002 and read some of my old entries. For those of you who watch the TV show House, this guy is the same kind of specialist, only he works with kids…….and he has a bigger ego than the character on House.

(That reminds me of a good joke…….maybe when I’m in a better mood I’ll put it on here for you all to enjoy.)

It is now 12:07am, and we are minutes away from the ultrasound folks arriving. They had wanted to do their abdomen ultrasound earlier, but then they saw the ng tube and said they needed to perform their test when Zachary had an “empty” stomach. So they rescheduled it for midnight, between the feedings. (I don’t see where 4oz of liquid nourishment could affect an ultrasound…but then again I never did complete (or attend) medical school.

The one positive note is that he seems comfortable and relatively pain free now. The many negative notes would include:

* Swollen eye
* High fever
* Eye pain
* Low blood counts
* NG tube
* Possible eye infection
* Unknown cause of possible eye infection
* Weakened state
* More weight loss (104lbs. Now)

Scott

Wednesday, November 19, 2008 4:41 PM CST

(If you read this update before 7pm 11/19 EST then you need to check the end...I added to it.)

Well it has been a week since my last update, and I actually am beginning to feel a bit guilty about not updating. So here you go.

Zachary has been doing a little bit better with the eating/drinking challenge. He is still not consuming enough, but we are working on it. We make him milk shakes and offer him pretty much anything he wants, but his appetite is virtually non-existent. I was off from work today and I was able to get him to go out of the house for a few hours. He ate a bowl of cereal before we left, and then he had a slushy at lunch time. Since then he has been sleeping, so we will wake him in a bit and try to get him to eat something for dinner.

Monday was a rough day for Zachary. He had his blood counts checked locally, and he and Rebecca stopped in at my work to visit me. He was upset because his platelet count was only 16,000 and he felt like we were not making any progress and that his stem cell recovery was NOT working. I tried to reassure him by letting him know that it may take a little bit longer, but I think he sensed that Rebecca was upset too.

I have been focusing more on the weight/nutrition aspect of our current dilemma, and trying to not (for once) look too far forward at the many challenges that we have facing us. His platelet count rebounding is a HUGE issue that we need to start seeing progress in, but none of that will matter if we can’t get him eating more, and out of bed more. His muscles and bones are achy and sore from being in bed too much. It has become somewhat of a vicious cycle.

He’s tired from the meds, so he sleeps more and isn’t hungry. He doesn’t eat/drink enough, so he is tired more. “Round and round she goes”…………(you know the rest.)

The one encouraging thing that happened today was when we were pulling into the driveway and Zachary mentioned to me that maybe we should cut back on the Fentanyl patch, so that if that medicine is indeed curbing his appetite, we can try to kick-start it again. I agreed that it might be a good idea, especially since he has not been experiencing pain throughout the night on the lower dosage that we have been using. He still winces and even gets tears in his eyes when we drive over a bump in the car/truck. His right hip is VERY sensitive to motion or disturbances, and he spends most of the day enduring a headache that he describes as a migraine.

I brought him eye coverings from work so that he can eliminate the light while he is trying to sleep, and that has helped a little.

He has been getting out of bed in the morning to take a bath, both to eliminate the smell of sweat from being in bed, and to try and get some warm water on his muscles. (He wants a whirlpool/Jacuzzi now.) But walking around the house is not easy for him, and when we are out of the house…..it is ALL wheelchair.

Yesterday he developed a fever and almost had to be admitted to the hospital. When Rebecca spoke with the doctor, she said that if he got over 101.0, that he would need to be admitted. Last night he got up to 100.8. Today he was up around 99.5, so we will be keeping an eye on that new development over the next few days.

Things have definitely been better……and worse for us.

Scott

P.S. I wrote this update earlier today, then Zachary's temperature went up to 101.6, so he and Rebecca have headed south to Palms West Hospital to get admitted. The doctor knows he is coming, and hopefully they will be able to turn things around for us.

Thursday, November 13, 2008 9:15 PM CST

***NEW PHOTO IN ALBUM***

(Zachary with two Miami Dolphin cheerleaders.)

This has been another trying week on us. While we are very pleased to have gotten past the jaundice episode and have Zachary’s yellow hue return to normal, we have been losing the war on eating and drinking. The narcotic that he has been on since Thursday of last week has kept him in a zombie-like state, sleeping most of the day, and resting when he’s not sleeping. His appetite is completely gone. He has had several days where he barely had anything to drink and ate nothing.

It should come as no surprise that at today’s exam he only weighed 105lbs. (He’s now lost almost 20lbs. in the past 4-5 weeks.) He was definitely dehydrated today, and he needed platelets. They also gave him fluids and threatened to admit him into the hospital if he didn’t drink at least two bottles of Ensure. (He drank the bottles.) His liver function came back improved again, so apparently the stones (or whatever they were) have passed. THANK GOODNESS!

Our current dilemma has us trying to find a way around the pain that does NOT put him into a coma all day so he can regain some strength. We changed out the Fentanyl patch to a lower dose today, so hopefully that will help some. The doctor also prescribed a medicine that is supposed to increase the appetite. We started on that tonight, so we’ll see. Meanwhile he ate a bowl of cereal before bed, and had a swallow of Boost with his night meds…..so he got a few calories there. (The nutritionist at the hospital told Rebecca that Zachary needs at least 2,000 calories/day.) Good luck with that!

I hate that he is so thin now……..we need him to gain back his weight and strength so that we can get him started on the next medicine.

Speaking of that, I spoke with Philly today and it seems pretty obvious that Zachary will NOT be ready to travel up there next week, furthermore, the week after that is Thanksgiving….which means the schedule there will be screwed up…..so I asked about booking travel plans for the week after that….they are looking into it and will email us within a day or so.

The bad part about that is that we are once again giving the cancer time…….time we can’t afford to be giving. We know what happened the last time we waited too long……and we are definitely gun shy.

If his platelets recover within the next couple of weeks, then we might be able to do conventional chemo if the pill still isn’t ready for us. (The pill is still not ready….in case I forgot to mention that earlier.)

So there you have it….we still have a lot on our plate……and we still have an uphill battle. (So what else is new?)

……or as my dad would say……”Other than that Mrs. Lincoln, how was the play?”

Scott

Monday, November 10, 2008 11:42 AM CST

***NEW PHOTO IN THE ALBUM***

I know everyone is chomping at the bit to get an update, and I happen to be off from work today, so here goes……..all the news that’s fit to print!

Wednesday’s update was obviously very emotional and caused an amazing outpouring of entries and comments in the guest book. We appreciate all of the support and prayers from everyone…..even those of you who have lurked in the shadows for months/years and are just now coming out of hiding.

Zachary had his blood counts rechecked on Thursday of last week, and they showed that he needed blood and platelets. We expected this, since he is still recovering from the MIBG treatment that he had about a month ago. His liver function levels showed slight improvement on Thursday, indicating that he probably had already passed the gall stone(s), if that was indeed what was causing him to be jaundiced. He didn’t get his counts checked on Thursday early enough to get the transfusion, so we scheduled that for Friday morning. The transfusions went fine on Friday, and while he was there, they rechecked his liver levels and there was some more improvement. They also switched his pain meds from the morphine to the Fentanyl patch, which seems to be doing a better job of consistently controlling the pain. The downside to that med is that it keeps him tired for most of the day, and he has also lost his appetite. He is not drinking or eating enough right now which has us concerned. His weight is down to about 110-112lbs., which means he has lost almost 15lbs. in the past 3 weeks. If he doesn’t start eating and drinking more in the next few days, we will have to consider putting an NG tube in.

Even though we are doing a better job of controlling the pain, he is now using the wheel chair everywhere except around the house, where he manages to limp from the door to his bed, where he spends most of the day.

We have a long road to “recovery”, and as I have mentioned before, there are still hurdles that we need to clear…….but compared to a week ago, we are still flying high and looking to find a way to beat this monster.

As a parent in our position, there are many factors that we use to help us gauge Zachary’s mental and physical status on any given day. Upon returning from Philly, we started to see some very “good” indicators that he was getting better………some of those were:

Yellow (jaundiced) appearance was fading.
Pain was being managed better.
His spirits were better.
He was more optimistic.
He was able to stand up for short periods of time.
He was in a better mood.

By far though, the most compelling evidence that he was returning to a more “normal” state of mind was the fact that on Friday, he got in trouble for inappropriate cell phone use and lost his phone for a day! (You know your child is well when you are willing and able to punish them.)

Over the years Zachary has been treated to many exciting and special treats and adventures. Last Thursday, less than 12 hours after getting home from Philly, he got a once-in-a-lifetime treat that even had me jealous. The Connor Moran Children’s Cancer Foundation had set up a special day at our local race track for several of the cancer kids. They knew of Zachary’s “bucket list” and the fact that he wanted to drive a car. I had already decided that I was going to find an isolated spot where he could drive Rebecca’s Saturn Vue without getting into any trouble or hitting anything…..but the charity had bigger plans. Apparently, children are allowed to drive and even race at these private tracks, so they made plans to allow for Zachary to drive a car there on their brand new course which Rebecca described as a clover leaf shape. I had heard only bits and pieces of what he was going to do that day, and I had to work, so I really didn’t give it too much thought.

Until.

Until Rebecca called me on my cell and said, “You’re not going to believe what our son is doing right now.”

“What is he doing?”

“He is driving around the track in a convertible Ferrari. DRIVING…not riding.”

“WHAT??????”

“Yeah….the owner of the track has an automatic, (Zachary has never driven a car, let alone a stick shift), so he took Zachary, buckled him in, and off they went.”

“So he’s just motoring REALLY slowly around the course….right?”

“Oh no…..he has sped by at about 70mph already…driving with one hand on the wheel and waving to the crowd with his other one.”

(At this point in the conversation, I saw my wallet, house, truck, jewelry, underwear….and everything else of value in my home, flash before my eyes.)

He had a blast. According to everyone who I spoke with, he stayed within the cones, never got near the walls (thank goodness), and did great. The owner of the car, who was with Zachary, told him that he drove well enough to get his license now.

The car was only worth a couple of hundred thousand….so I guess that I shouldn’t have been THAT worried.

Our local newspaper and television channels were there, and we were able to TiVo the story. They even interviewed Zachary. The clip that made most of the shows was one where the reported is asking him about being told you may only have 6 weeks to live and what his thoughts were. At first he replies that he felt he could beat the cancer. The reporter then asked, “Didn’t you have any doubts.” Zachary then paused, and gave that question some DEEP thought before responding with, “I had a TON of doubt, but I have dreams of doing things, and dreams are worth living for.”

We heard the other night that MSNBC picked up on the story and played it nationally on their show too.

For the record…I’ve never even SAT in a Ferrari, let alone driven one. Zachary supposedly got up to around 100mph on one of the straight-aways……………that’s just great……..learning to drive in the Saturn Vue will be SO exciting for him after tooling around in an Italian racing machine. NOT!

The other neat thing that we got to do this weekend came from the bowling alley. One of the families there donated their three tickets for the Miami Dolphin football game on Sunday. They contacted a friend who is with security, and they made it possible for us to get down onto the field during practice to watch the players before the game. Zachary also got his picture taken with two of the cheerleaders. (I will put that one in the album today or tomorrow….keep checking.) The only bad part of the day was that he was not feeling well from the moment he woke up. When we got down there, he threw up some acid and didn’t even want to stay. The cheerleaders pepped him up a little bit, but we were only able to stay through the first quarter. We did get to see two Miami touchdowns, so that was pretty cool.

Two of Zachary’s teammates from the bowling team made the state tournament, so they are competing tomorrow up in Orlando. If he was feeling better, we would make the trip up, but car rides are torture right now, and with him not eating/drinking well enough, the trip is just not doable. Hopefully we can get him eating and drinking in short order.

Scott

Wednesday, November 5, 2008 10:39 PM CST

I’ve got one question for all of you out there who follow my journal entries……..and before I ask that question, I am going to request that when you read it, you read it out loud, and scream the words. If the kids are sleeping….they’ll get over it.

DO
YOU
BELIEVE
IN
MIRACLES???????

(It helps if you use the same voice of the announcer who called the hockey game in 1980 at the Olympics when the USA defeated the USSR.)

I believe in miracles…..because we got one today!

The doctor walked into the room where Rebecca, Zachary, Ian (Rebecca’s brother), and Angela (my sister-in-law) were all waiting for the bad news. They had been somewhat prepared on Tuesday by the nurses and support staff who had seen Zachary and were VERY upset by how bad he looked. The yellow in his eyes and skin, the lost weight, the wheelchair…..it was all looking pretty grim……..and then the doctor dropped the bomb…..

“Zachary’s scan from today shows marked improvement in almost all of the sites. Apparently the third MIBG treatment has worked. The yellow in the eyes, the elevated counts in the blood (his one liver level is supposed to be between .6 and 1.4, it was 3.7……the other one is supposed to be between 10 and 28……it was 196,) are probably from some sort of obstruction or gall stone that is unrelated to the cancer. We find it highly unlikely that he would have improvement in virtually all of the sites, and then have a NEW tumor in his liver or belly. We recommend doing an immediate ultrasound to see what is going on.”

The doctor did a thorough examination of Zachary and made the decision to change his pain medicine to a Fentanyl patch, which should do a better job of managing the pain. They think that the bone pain may be “remolding” of the bone where disease has been killed off. Apparently that can be extremely painful….and it can take quite some time to pass.

They were able to squeeze in the ultrasound before leaving for the airport, and it came up clear. They have further speculated that he may have already passed a gall stone. Tomorrow morning we will have his liver functions checked in Palm Beach, and if the levels have gotten worse, they will do a CAT scan to look further for a blockage. Meanwhile, Rebecca, Zachary and Ian walked in the door from their return flight about 30 minutes ago, and Zachary has already started to lose his yellow color in his skin and eyes. (I am praying that the stone or whatever has passed.) If for some reason there is a blockage, the doctor in Philly seemed pretty confident that it could be treated with medicine and that we would be able to avoid surgery.

The other interesting news is that on Monday morning, Zachary’s platelets were 31,000. You may recall that he was transfused on Friday, so there was speculation that he might need more on Monday. 31,000 isn’t low enough to cause concern, so they approved him for travel. Tuesday morning in Philly, his platelets were 45,000!!!! That means that his bone marrow is probably starting to work again and that the stem cells have more than likely worked their magic. Philly wants us to get past this blockage/liver issue, and they want his platelets to be at least 100,000, then we can return and get reevaluated and have him start on one of the pill meds that we had been fighting to get. If his platelets plateau below 100,000, then we will still take him back in two weeks and get him on a maintenance type drug that we can do at home with little or no side-effects.

(Have you been paying attention here?)

We had already called Hospice…they were scheduled to start seeing us tomorrow!!!

We were operating under the belief that we had about a week, or maybe two left with him.

This is just amazing.

The pain was/is located in his right upper leg/hip (where the disease has always had its highest concentration.) He started getting fevers on Sunday. (He has always gotten fevers when the tumors were growing.) Then there is the whole jaundice thing…where we were led to believe that he probably had cancer growing in or around his liver, blocking the duct that drains from there. EVERYTHING pointed to BAD news.

People keep telling us that they are convinced that God has some special plan for Zachary…..I’m beginning to think they may be right.

I know that there are an amazing number of people across the country and around the world who have been keeping us in their prayers, especially after the two most recent updates……..but SOMEONE out there put us over the top, and got us our miracle. I don’t know who you are, but apparently we were one prayer shy of where we needed to be, and then you did your thing, and here we are. So thank you, wherever you are. I’d give you a big hug if I knew who you were.

We are NOT out of the woods yet. We need to get his liver counts back into the normal range…..we need to make sure the pain is under control…..we need to get him eating and drinking again……we need to get him to gain back some of the 12 lbs. that he has lost over the past two weeks…..we need to get his platelets up over 100,000….and then we need to get back to Philly and have another good week of testing so that we can get him on a medicine that will at worst, keep the cancer from growing…and at best….knock it back some more.

The “coach” has put us back into the game!

When Zachary walked in the door tonight, he limped up to me and we gave each other a huge hug….and I said what any father in my position would say to their son who has battled through the fire and flames for so long against this horrible monster….I said….

“YOU are a freak of nature!”

“Every time the cancer tries to knock you down, you find a way to kick its ass!”

“You are AMAZING!”

My family is home…..all is well in the world.

Scott

Tuesday, November 4, 2008 10:45 AM CST

OK….I am off from work today, and a lot has happened in the last few days, so I guess it is only fair that I update all of you while I have the time and the state of mind to sit here and puke out my thoughts.

I went back and reread my Saturday update, and I am quite certain that when I wrote it, cancer sucked. It is now Tuesday, three days later, and I am here to report that cancer does INDEED still suck.

In addition to my previous description of Zachary’s condition, he now has a jaundiced/yellow look in his skin and eyes. This started a little bit on Saturday and has slowly gotten worse. We were able to get in touch with our Philly doctor via email over the weekend, and she informed us that they would be able to see Zachary this week for testing if we could get him up there. (Their original flight was scheduled for Sunday the 16th, in two weeks…..but as I mentioned, we don’t believe that he would be well enough to travel if we waited.)

I knew that Rebecca could not make this trip alone, so we discussed options for having someone to travel with. Obviously the ideal situation would have been for me to go, and my boss would have made the necessary adjustments to allow for that, but there are other factors to consider……….I will discuss those later in this entry. Our second best option was for Rebecca’s brother Ian to go. He lives in Georgia, about 5 or 6 hours away, and didn’t have the means to get here quickly enough. So, I rented him a car on Sunday and he drove down, arriving at around 10:30pm. I changed Rebecca and Zachary’s travel dates so that they could fly out on Monday (yesterday), and I added a ticket for Ian. I booked them into the hotel that is walking distance from the hospital, and we sent a message to the doctor to inform her of our plans.

Actually, I jumped ahead of myself a bit. Sunday morning all of those plans were in my head, and I knew that we (Rebecca, Zachary and I) needed to have a serious discussion before putting anything into motion. I first sat with Rebecca and explained what my thought process was. (Mr. Spock would be proud of my logic.)

“We (Rebecca, Zachary & Scott) are all in agreement that Zachary’s pain and other symptoms are a direct result of the cancer not responding to the latest MIBG treatment. We are also all in agreement that his condition seems to be deteriorating rather quickly. We also know from the previous Philly trip that other than the MIBG therapy (which we’ve already done and exhausted as a future option), the only alternative that the doctors have for Zachary is conventional chemo, to be used in an attempt to lower the level of disease and stop the progression so that he can try one of the pill chemos that we have been working towards.” (She agreed to those thoughts.) “We are also in agreement that we do NOT want him dying in Philly! If they offer any treatment that would require him to stay there, we would decline, based on the belief that there would be a high probability of him NOT surviving the next therapy, and we don’t want him away from family and friends when/if that happens. If they DO recommend conventional chemo, we can either do that at our local hospital, or at home.” (She agreed to all of that too.) “We also know that Zachary was pretty set AGAINST doing conventional chemo, so I suggest that we lay it on the line for him, because without him being on board with this, traveling to Philly now will do nothing more than strain his body and take him away from me for 3 days.” (She agreed to this as well.)

We brought Zachary into the room and I basically went through it step by step. He actually interrupted me when I got to the treatment part and said, “I know what they are going to recommend, conventional chemo……and that means loss of hair, and embarrassment…and I don’t want that.” (Not to be morbid or cavalier about it, but I sensed that he needed to hear the brutal truth, so this is what I said….)

“Zachary, it’s much worse than that. Yes you will lose your hair, but there will also be nausea, vomiting, fevers, hospital stays, transfusions, and it is very possible that the chemo will shorten your life or kill you. Furthermore, I am NOT convinced that taking you to Philly now is the right thing to do. I do NOT want you to be away from me if we are closing in on the end of your life, and I certainly don’t want to put you through another treatment, if you are not prepared to endure that. BUT, you need to understand that a week from now, you will more than likely NOT be well enough to make this trip. Today is Sunday, I am trying to move heaven and Earth to get you guys up there tomorrow, so that we can get definitive answers by Wednesday….if you guys don’t go now, I don’t think we will get a second chance at this, which is OK. I just want you to know what is at stake here.”

He paused for about 2 seconds, and then said, “Let’s go for it,” then he got up from the bed and limped out of our room and said, “My friends are picking me up in about 10 minutes so I can watch them bowl, I’ll see you later.”

Rebecca and I were shocked. I never believed that he would agree to go, but once he did, she was determined to get there.

Sunday evening brought new issues, Zachary got a fever. He was up to about 101, so Rebecca called his doctor. She said that unless he got over 101.5, he should be OK to travel. We gave him some Tylenol and he got through the night without any higher temps. Monday our local doctor checked his counts, and his platelets were holding at 31,000. (I would have bet money that they would be lower, fevers burn platelets.) His other counts showed that he should be OK to travel. The doctor did comment about his appearance and how he did NOT look good. They stopped over to say goodbye to me at work, and my co-workers commented about his yellow eyes and skin too.

The three of them made the trip up without any major issues. He was drugged up for the flight, so he got some rest. The cab ride to the hotel was rough, (lots of pot holes and bumps), and he didn’t sleep too well last night….but right now he is being seen by the staff in Philly, and in an hour they will inject him with the isotope for the scan tomorrow. If his blood counts are low today, they will transfuse him this afternoon. By 12pm tomorrow, we should know exactly what is going on with his disease.

Knowing that tomorrow will more than likely be rough, we were lucky to have my sister-in-law volunteer to fly in from Pittsburgh to be with them when the doctor goes over the test results. She is a nurse, and I think that having another family member there will help. All of them should be able to fly home late tomorrow afternoon, so they will be together for most of the day to support each other.

Now, back to my earlier thought that I mentioned. My boss is very understanding, and he has made it clear that the company will do what it can to allow me the time I need to deal with this nightmare. Having said that though, I know how my mind and body work. If we are indeed nearing the end of this battle, I want to be there for those last days, and I KNOW I won’t be in any shape to work in the days immediately following that process. So, rather than take time now and then again later, I would rather have the time that I NEED, WHEN I need it. That way I am able to take care of my financial responsibilities, and keep my sanity (somewhat.) We may not be out of miracles. There is still a chance that this jaundiced/fever/pain thing is something else. I don’t believe that it is something else, but there is always a chance. If we are able to somehow get past this current nightmare, I need to NOT be the guy who cried wolf….because when I need the time, I will NEEEEEED the time.

For the first time in 8.5 years of treatment, I was mentally in a place Sunday morning where I would have been just as accepting of him NOT going to Philly as I was of his decision to make the trip. That scared the crap out of me. The fact that I was NOT the one who was pushing for the next treatment, or researching the backup plan, or chasing down the doctors to find our “what next” idea. It’s not that I have given up or even accepted the fact that he is probably losing this battle, it’s that I just don’t want to make him miserable or uncomfortable if we are indeed nearing the end of this battle. He deserves better than that from me.

He deserves the world………….and more.

Scott

Saturday, November 1, 2008 8:20 PM CDT

Sorry for the lack of updates….work has been busy, and I have been avoiding “facing” all of you when I have nothing good to report.

There have been so many times over the years when things were looking bad for us, and somehow we always managed to find a way to beat back Zachary’s cancer so that he could enjoy more of the excellent quality of life that we have been blessed with.

We are in a bad place right now…..we need a miracle.

Since getting home from treatment, Zachary’s pain in his leg has only gotten worse…..not better. When he first underwent the MIBG therapy, it only took about 5 days for the pain to go away. It has been three weeks, and he now needs Morphine three times/day, and then Oxycodone every 3 – 4 hours for the breakthrough pain that he is experiencing. Thursday night the pain was so intense he was crying out and screaming from it. That was when we switched to the Morphine. The next day he saw his doctor, and she made sure that we had a plan for the weekend where we could control the pain.

The downside to all of these narcotics is that he now sleeps most of the day, and he has all but lost his appetite. When he was in Philly three weeks ago he weighed about 124 lbs. Friday he weighed only 113 lbs. I just got home from work at about 7pm, and he had not eaten anything all day long. I woke him up to see if he would eat something while I was having dinner, and surprisingly he came out and tried to eat a little bit. Unfortunately, he only had a very small portion. Loss of appetite is a known side-effect of these drugs……but the only alternative is leaving him in pain…..and THAT is not an option for us.

Zachary is now convinced that the cancer is spreading too quickly to control. He is unable to walk for long distances and has been using the wheelchair to get around the last few days.

While we have not heard a definitive opinion from the doctors, Rebecca and I are at a loss as to what else might be causing this level of pain in the exact area where he has had the most progression of disease lately. If there is an answer out there…….we would love to find it. Rebecca and Zachary are scheduled to fly back to Philly two weeks from tomorrow for another week of testing, but we are both skeptical of the chances for Zachary being strong and/or well enough to make that trip.

I emailed both of our doctors this evening and asked if we should bring in hospice/palliative care to assist Rebecca with Zachary’s care/meds. I am at work almost every day……so she is having to face the bulk of this without me.

I know this is NOT the update that any of you EVER expected me to write, and to be brutally honest with you, I am typing it as the tears are running down my face. I have been crying since leaving work and calling to let Rebecca know that I was on my way home…….she informed me of how things had gone today……I pretty much lost it after that.

Thankfully, after eating his few bites, Zachary got a call from one of his friends who was at the bowling alley. She invited him to watch her bowl, so Rebecca drove him over. When they got there, Zachary’s best friend Brandyn was there with his family, and another cancer family who we are close with showed up….so he will get to spend some time with great people who are keeping us sane during this madness.

I can’t type anymore tonight……but when we know more, I will update.

Scott

Sunday, October 26, 2008 9:28 PM CDT

Once again work is to blame for me not updating on a more regular basis. (If my boss were to comment on that subject, he would probably say, “Scott……you would be able to work your schedule AND keep your web page updated……if only you didn’t have such a little brain!”)

There is an inside joke there with the whole “little brain” thing, but I just couldn’t resist.

Actually work has been going pretty well. I have been completing my various courses and training that are all part of the process. A lot of what I do is second nature to me from my old retail days, and the rest seems to be coming fairly easily to me….even with my “little brain.”

Zachary and Rebecca are home from the stem cell infusion that Zachary received in Gainesville on Thursday. They left Wednesday afternoon with my mother and drove up. Their appointment was for 8:00am Thursday morning, so they needed to be up there the night before to avoid having to leave our house at 4:00am. Wednesday ended up being a day full of drama for us. On Tuesday afternoon, we got a call from the hospital in Gainesville letting us know that they had NOT yet received approval from our insurance company for the stem cell boost.

(Actually, these stories go much better when I give you the actual transcript from those conversations.)

Me: Hello.

Them: Hi Mr. Finestone, I’m just calling to let you know that we are still waiting for approval from your insurance company for Zachary’s stem cell boost.

Me: (Stunned silence.)

Them: Mr. Finestone….are you there?

Me: Yes….I’m just a little bit confused though. Zachary got stem cells about a month ago, and we were never informed of any insurance issues or approval that was required…….why are we having an issue now?

Them: Well…..he did need approval last time too, but they probably were able to get it quickly and never needed to contact you. You see, your regular case manager at the SFB Company(You’ll have to read my book to know what that stands for,) is away this week, and I am dealing with someone who is covering for her.

Me: Did you say “case manager?”

Them: Yes….your case manager.

Me: We don’t have a case manager. Over the past 8.5 years they have tried on occasion to assign one to us, but they never last, and they never seem to be able to manage anything…..let alone our case.

Them: Well, you’ve got one, and I’ve dealt with her a few times on your case. When she returns, I’ll contact her and let her know that you would like to hear from her, so that you have her contact information.

Me: Wonderful…….I’m looking forward to it. Now, back to our more pressing issue. So, the SFB Company is debating on whether or not to approve Zachary’s stem cell boost……do they realize that he has already gotten the MIBG therapy and that without this boost, he will need weekly transfusions until he dies?

Them: Well, I’ve never heard of them refusing one of these, I’m sure I’ll have an answer by early Wednesday morning.

Me: Well, my wife, mother and son are scheduled to drive up there tomorrow, so we REALLY need to know what is going on.

Them: I call you first thing in the morning.

Suffice it to say, Wednesday morning came and went without any calls. I ended up calling the woman many times throughout the day, and all I could get from her is, “The issue is being reviewed by the medical directors at the SFB Company.” Finally at about 3pm I told Rebecca to leave for Vero (where my parent live) to at least get that hour of the trip under her belt. That way, when we finally got the green light from Gainesville, she would already have my mom, and they could leave from there. At about 4pm, they finally called to say that they had heard back and the procedure was approved. Apparently the SFB Company had gotten confused and they thought Zachary was getting another transplant, not just a boost. Some bean counter must have gotten his panties all bound up worrying about the expense of a full transplant and put a hold on the approval. In the end, we got our approval, so that is what matters.

(I could go on and on about my feeling towards the SFB Company, but I just don’t have the energy right now.)

The stem cell boost went pretty much as planned. When he got there, they had 3,000,000 cells left (three bags), and CHOP had ordered them to only give 2,000,000 of those back to him. They wanted us to have 1,000,000 in reserve for future use…..just in case. They spent most of Thursday in the clinic getting the stem cells, and dealing with the odor that accompanies them. We had warned my mother about it, and she had thought we were exaggerating…..now she is a believer.

Once he got home on Friday, some of his friends got to experience the odor first-hand, and they described it as a tomato soup-like smell. I saw him briefly on Friday when he and Rebecca stopped at my store to say hi, so I got another whiff of that wonderful smell…..and I’m here to tell you this…….if I were a tomato soup manufacturer…..I’d be VERY offended!

I’m not personally a fan of tomato soup, but I’m guessing that the millions of folks out there who ARE fans, would NOT be eating it if tasted like he smells after stem cells.

Today we got to enjoy a wonderful day at Lion Country Safari, a local drive-thru wild animal preserve. We go every year with Connor Moran Children’s Cancer Foundation, and it is always a blast. This year they had about 100 people, so there were a ton of families who we were able to hang out with. It seems that every year we attend that function; we leave there with an interesting story, and this year was no different.

One of our favorite parts to the park is when we get to drive up close to the ostriches and see if they will come over to the truck to peck at our windows or check us out. When we got to the ostrich part of the park today, there was several hanging out near the road, eating their breakfast….so I figured we had a shot at watching them up close again. I pulled up and stopped right next to a group of three large birds. What happened next will forever be imprinted on my brain. One of the birds finished eating, took about three steps away from us, turned around, so that its backside was facing us, and then put on the most disgusting display you could possibly imagine. The bird bent over and appeared to invert it’s anus, leaving NOTHING to the imagination…..(I was about 7 feet away, and I’m fairly certain that I was able to see the bird’s tonsils from looking up its butt hole!) then, when we THOUGHT we knew the inevitable was coming…..it shocked us further by releasing a white milky substance followed and mixed in with large amounts of crap. Now, I’m not one to judge Mother Nature or her processes, but I PROMISE you what we witnessed today was NEVER on Mutual of Omaha’s Wild Kingdom!!!

The rest of the drive through the preserve seemed to follow that theme, every time we would get cozy and happy, watching some animals; one would decide that it was time to take a dump. The zebras were the last ones in the park to grace us with that visual……right before we ate lunch.

And just to make sure that we got the message from wherever messages like that are sent from, we were driving to our friends house for dinner tonight, and it was dark outside…..I was going around a corner, less than a mile from their development, and out of nowhere a dog shot out from behind a bush, turned it’s butt toward the road, arched it’s back, and started to release a few steamy surprises for all of us to enjoy!

In summary……..it may have been a crappy day….but it was a FUN crappy day!

Zachary gets his counts checked tomorrow. His platelets were already dropping on Thursday, so he may need a transfusion this week. We’re hoping that by next weekend or early next week the stem cells will have started to set up shop and he won’t need too many transfusions.

Scott

Saturday, October 18, 2008 8:06 AM CDT

Sorry for missing the “lurker-imposed” deadline for an update. I have been closing at my new job all week, so I was getting home pretty late. (Excuses, excuses.)

Zachary and Rebecca got home with relative ease. I was able to bring Zachary’s friend Brandyn and girlfriend Chy (short for Cheyenne) to meet him at the airport.

Zachary seems to be doing pretty well. He is complaining less about the pain and has even been bowling since he got home. He is taking his medicines to protect his thyroid and he even endured another dental appointment on Thursday to (hopefully) resolve the root canal and hole drilling issues. The dentist is now constructing a small plate to support the back of his front lower teeth. Zachary has been grinding them while sleeping and loosened them to the point where some of these recent issues became exacerbated.

As for the Philly treatment….there really isn’t a whole lot to report just yet. They did their customary post-treatment MIBG scan, and it showed a few more spots in the legs than they had seen prior to treatment. (This is normal…..with the higher levels of isotope in his body from the treatment, any smaller sites will be more likely to light up on that follow-up scan than they would be on the initial one.) Rebecca said that overall the doctor seemed pleased. We really won’t know anything concrete until he returns for the week of testing after his counts rebound from this round. Next Thursday he will be in Gainesville getting back more stem cells………we remain hopeful that they will once again work their magic and kick start his marrow into making the blood particles that he needs.

We are on our way out the door headed to Saturday morning bowling, so this will not be a long update. I am off again tomorrow, so you never know, I may update again.

Scott

Saturday, October 11, 2008 2:52 PM CDT

If you are reading this update and you have NOT seen the one dated Wednesday, October 8th, then my recommendation to you is that you unplug your computer, throw it out of the nearest window, and avoid at ALL costs every going online to visit our page again!!! (Ignorance is bliss.)

OR, you could go back and read that update first……but I’m just warning you, there is NO going back. Once you have read that update, you’re in the lifeboat with the rest of us.

Most of you have been following our story for at least several months now, so you will surely recall the “starting number saga” that resulted in a contest from this past summer. The starting number is of course referring to Zachary’s radiation level immediately following the injection of the radioactive isotope. When he had the first round, his starting number was 99. He needs to be below a 7 to be released from the hospital. The radiation safety department checks his level each morning with a Geiger counter that is positioned 3’ from his chest. (I believe there is a federally mandated standard that they are following.)

The other interesting (or not) aspect of the starting number is that over the years, the doctors have seen a correlation between the starting number and the level of disease. In other words, if there is a lot of disease, then the radiation uptake will be higher, because the isotope is seeking out those clusters of cancer cells. If the disease level is lower,
…..you get the idea. This is not an exact science, but more of a general guideline that families use to drive themselves absolutely bonkers.

During Zachary’s second round of MIBG, his starting level was much lower, it was just 48. The consensus was that the first round had knocked back a fair amount of disease, and that resulted in a lower disease level, which in turn translated into less uptake of the isotope.

With this most recent round we were assuming that his starting number would again be very high, especially when you factor in the addition of bone marrow disease. So, you can imagine how surprised we were when they told us that his starting number this time was only 68. Being the problem solving control freak man who I am, I immediately began trying to put all of those years of medical school to good use, in an effort to figure out what it all meant. A split second later, I came to the realization that not only have I NOT attended medical school; I haven’t even slept in a Holiday Inn recently. (Two BIG strikes against me.)

Not to be thwarted in my efforts, I relied solely on my medical experience from these past 3,129 days, 7 hours, 27 minutes of having fought Zachary’s cancer. (Don’t bother checking my math…you KNOW I sat here and figured it all out.)

My theory was this; In May, I believe that his bone disease level was higher than it is now. While he didn’t have marrow disease back then, I think that marrow disease doesn’t translate into high absorption levels like bony disease does. The cancer in the marrow is “floating” around, and not necessarily concentrated in one (or many) spots, where the isotope would logically congregate. (The word ‘congregate’ has a religious undertone, and I can’t imagine ANYTHING being less holy than cancer.) Furthermore, I believed that marrow disease would be MUCH more susceptible to the isotope, since we obliterate the marrow and stop the blood making process when we do this treatment.

Taking all of this into consideration, I believed that he could have a lower level of disease in the bone this time, even with the presence of disease in the marrow for the first time in many, many years. None of that diminishes the magnitude or seriousness of how much the disease has spread; it merely (in my opinion) reflects why his starting number would be lower, without causing a panic that the third round wasn’t going to work. (For once I was trying to remain positive….who’d have thought that was possible?)

Yesterday our doctor visited Rebecca and Zachary, and much to everyone’s surprise (including mine); she pretty much said the same thing that I had guessed. She was not at all worried about the starting number, because the scans showed that in May, his bony disease level was much higher than it is now. As for predicting the future, doctors don’t do that too often…..you’re better off seeing a psychic.

So, Zachary’s starting number was 68, and yesterday he was already down to 24. This morning I had predicted an 11, and the actual number was 13.8……so, he should be released tomorrow morning at some point. They will stay in a hotel for two nights. (We switched the return flight from Friday to Tuesday….thinking that he wouldn’t get out that quickly.) Monday he has a post-treatment MIBG scan which should give the doctors somewhat of an idea as to how well the treatment went. They are also going to do a CAT scan of his brain. He is still having some pain issues, and they are concerned that the bony lesion in the skull may be protruding inward, causing some of the issues that he has been complaining about. His op sites are still very sore from where they drew the marrow from, but his leg pain has decreased dramatically. (That is probably partially due to the fact that he has been locked in that room since Wednesday and only walking when he has to use the bathroom.)

Rebecca is having a pretty rough time up there, but unfortunately there is no quick fix or easy answer for this problem. We both agree that I need to keep working, and as I wrote before, even if I were up there, only one of us can be in the room with him, so the other one would be away from there….worrying about how things were going. I am hoping that once they get out, she will start to feel better. (Sleeping in a real bed should help to make that happen.)

We appreciate all of the guest book entries, thoughts and prayers. As always, you have all stepped up to the plate and showed us that we are NOT alone in this battle.

I probably won’t update again until Tuesday morning, so don’t expect news regarding Monday’s scans until then.

Scott

P.S. The new complaint department for infrequent updates is:

www.you’vegottobefrigginkiddingme.com/complaintsthatwontgetread/goaway

Wednesday, October 8, 2008 6:43 PM CDT

Someone once told me, “If you don’t have anything nice to say, don’t say anything at all!” If I followed that advice, you would not be getting an update tonight!

If I were given a choice, to choose between;

A). Writing this update.
B). Having a colonoscopy without anesthesia.
C). Having root canal without Novocain.
D). Receiving an acupuncture treatment of 20 needles in my private parts.

I would choose B, C & D, simultaneously, all in an effort to avoid the inevitable……….passing along bad news to all of you.

As you already know, Rebecca and Zachary are up in Philly having a variety of tests done. The plan WAS to begin today on the phase I pill chemo that would have been “easy” to take and “not hard on the system.”

Unfortunately, the test results were bad……very bad. Zachary now has bone marrow disease again. I can’t remember how long it has been since his marrow has shown disease, maybe several years, but it’s there again, +/- 50%. His MIBG scan now shows disease in many, many places. The primary suspects right now are the spine, hips and skull. He is experiencing pain in his head, legs, and hips. All of this is due to the rapid growth of the cancer in his bones and marrow.

I was at work today when I received this wonderful (NOT) news. I had told Rebecca that if there were treatment decisions to be made, that I could take the call so that I could be included in the plan. Apparently, before I got on the phone, Zachary had asked his doctor if he could just, “go home to be with his friends and girl friend, and take about a year off from treatment.” The doctor had the horrible job of informing Zachary that his cancer is growing rapidly and that if he did not go onto a new treatment, he would probably only have about 6 weeks to live. (Not good news…..in case you were wondering.)

You may recall that the last time we faced this type of news; Zachary was not immediately onboard with the idea of jumping into another treatment. This time was no different. The doctor informed us that the original plan of trying a pill chemo had to be scrapped. She did NOT have enough faith in any of the pill chemo’s ability to knock back the disease, so she wanted to do something else. Her recommendation was to immediately jump back into a third MIBG therapy. (Get admitted today and start treatment tomorrow morning.) Instead of coming home Friday, they would have to stay the weekend and wait for his radiation levels to drop to an acceptable level, which meant they could probably come home Monday, or Tuesday at the latest. She also wants him to go back to Gainesville in two weeks to get the last of his stem cells. This will (should) jump start his immune system and be a preemptive strike on his blood making abilities. Instead of waiting for his counts to drop and then wasting 4 – 6 weeks on transfusions, we will have given him a better chance of recovering quickly from the MIBG therapy. Then, once his counts have stabilized, he will need to return to Philly for reevaluation, and hopefully THEN be able to start on one of the pill chemos, which should (fingers crossed) be able to keep the disease from spreading. This is all contingent of course on the success of the MIBG therapy. (We need step 1 to get him eligible for step 2.)

(I would like to pause here briefly to say that this all SUCKS BIG TIME! I assume you knew that already, but just in case, I thought I would tell you.)

Here I am, three weeks into my new job, unable to be there with them in Philly, to help navigate this mess. We can’t afford for me to be out of work…….and even if we could, I’m in the middle of learning everything that I will need to know once they transfer me from the training store. (God may be testing me……..I just hope that he/she keeps in mind that I was only a ‘C’ student!)

Tomorrow I don’t have to be in to work until 12pm, so hopefully I will be able to recharge my emotional batteries somewhat. I never sleep well with them out of town, but not having to get up at the crack of dawn might help.

Meanwhile, Rebecca is stuck in a lead-lined room with a miserable 14 year old who would rather be ANYWHERE else in the world than where he is right now!

Yeah……..no matter what angle I view our current dilemma from, it pretty much SUCKS! From the top, the side, the bottom….it’s one BIG SUCKFEST going on for us right about now.

The only “good” news that the doctors had for us was that in spite of Zachary’s bone marrow disease, and in spite of the multiple bone lesions, his blood counts were very good. This means that he is still making platelets, red blood cells, and white blood cells. There are no guarantees, but they are hopeful that because his counts are good now, once he gets his stem cells back, he will bounce back quickly.

After work today I went to the bowling alley to watch his teammates in a match. On the way there I picked up a Get Well card for him, and I had all of the boys and girls from the bowling team sign the card. The coaches were really nice about having the players all stick around to sign it for him. They also got another surprise for him that will be waiting for him when he gets home. I’m going to overnight the card tomorrow so that it gets there on Friday….that way it will cheer him up a bit before the weekend. (At least that’s the plan anyway.)

I’m pretty tired, and emotionally spent, so I am going to sign off now and let you all absorb this update. I wish that I had something profound or encouraging to add, but I’m at a loss right now.

Scott

P.S. Rebecca and Zachary have their cell phones. After tonight, Zachary will not be allowed to handle a phone, but Rebecca can put one on speaker phone for him. He would love to hear from his friends. If you have his number, don’t hesitate to call!!!

Tuesday, October 7, 2008 8:09 PM CDT

To update…..or NOT to update….that is the question!

I started flipping my mental coin, trying to decide whether or not to update before we get the test results from Philly. (We will know tomorrow.)

So I started flipping that mental coin, and it came up ‘heads’, which meant I had to do an update. So, I decided to go for best of two out of three. Of course, ‘heads’ came up again. So, I decided to go for best of three out of five. ‘Heads’ came up yet again, so I gave up and here I am doing the stupid update.

As I just wrote, we will have test results tomorrow morning. Rebecca and Zachary got into Philly Sunday evening without any problems. The Ronald McDonald House was nice enough to save a room for them, so that will save us a ton of money on hotels and meals. Monday morning Zachary had his bone marrow aspiration and bone marrow biopsy.

Now, for those of you who are ‘late’ coming to the cancer journal entry game, (Yes Steve, I am thinking specifically of you!) you may not be familiar with bone marrow testing, since we haven’t had to do a whole lot of that over the past year or so. Basically, the doctors put Zachary under a general anesthesia that is affectionately called, “Milk of Amnesia.” It is white (like milk), fast acting, (it takes about 20 – 30 seconds to knock him out), and he usually wakes up relatively easily afterward, with almost NO memory of what happened. (Hence the ‘amnesia’ part.)

While they have him asleep, they extract bone marrow from both hips, and then they take a small sliver of bone to examine too. Now, for those of you who are NOT Steve, you may remember that in the olden days, we used to put a lot of weight into how easily the bone marrow would draw up into the syringe. There are old wives tales that say bone marrow that draws easily is less likely to be occluded with cancer cells. You can’t really hang your hat on that fact, but when you are waiting for results, it’s nice to have something to focus on, especially when results can take many days. (Now they only take two, but we used to wait a week or more.)

So, the good news from Monday’s test was that the marrow came out easily. YEAH! (It means nothing, but it got me to sleep last night, and will surely help tonight.) Now, on to the bone sliver. We really have never focused too much on this aspect of the test. Basically, they are looking for disease in the bone, because the marrow can be clean, while the bone may have accumulated cancer cells. When I spoke with Rebecca yesterday, she said that the doctor was pleased with the marrow aspect of the test, but she was somewhat dismayed to report that the doctor was unable to procure a bone sample from Zachary’s right hip. She said to Rebecca, “I have done thousands of these, and I have never NOT been able to get a bone sample….until today.”

Great…..so much for sleeping! (It’s highly overrated anyway.)

I have NO idea what that all means. Fortunately, I will have results by lunchtime tomorrow, which means that you all will get an update by sometime in mid-December! (Just kidding….I get off of work around 4pm, so I will make EVERY effort to update tomorrow evening.)

Today Zachary had the CAT scan with and without contrast. He also had is EKG, Echo, and injection for the MIBG scan. Tomorrow at 8am he gets the MIBG scan, and then shortly after that they will meet with our doctor to discuss results and treatment options. We are hoping to be eligible for the new protocol that they emailed to us a few days ago. It involves a pill, taken once daily. There are no major side-effects (leave it to us to find the minor ones.) It would require a one day visit in one month for follow-up, and then a three-day visit a month after that.

In keeping with our ongoing efforts to stay FULLY stressed and freaked out, the hip that would NOT produce a bone sample was Zachary’s right side, which for those of you in the cheap seats, is the side that was still lighting up on the last MIBG scan. It is also the side that we have been assuming he pulled a muscle on, BUT, with this new uncertainty, it is MUCH more fun to postulate about all of the awful things that might be going on inside of his body. (NOT)

Zachary is also complaining now of a fair amount of pain in that right leg. He also is having an unusual amount of discomfort in his hips, from the procedure. (Usually he is up and running within a few hours, with no problems.)

Tomorrow morning, Rebecca and Zachary will have to wake up early, clean their room at RMH, get a cab with their luggage, make their way over to the hospital, get up to the out-patient clinic, get the MIBG scan, drag their luggage over to the meeting with the doctor, then get admitted for two nights of observation. (The protocol requires regular blood draws to monitor drug levels for two days.)

Oh well….28 hours from now I’ll know more.

In other news, I had a really bizarre encounter with a loaf of bread. Rebecca did the shopping a week ago, and as she always does, she purchased a loaf of fresh bread. I have been trying to make sandwiches for my lunch breaks at work to save money, so this works out great. Well, I went to make a sandwich from the new loaf of bread, and I immediately noticed that the slices were not normal. I glanced at the package, and it read, “Texas Toast.” Hmmmm….curious name for bread, but how different could it possibly be?

Well, let me tell you how different it is. I put turkey, cheese and mayo on the sandwich, and when I ate it, it basically tasted like a bread sandwich, with a small, almost unnoticeable HINT of turkey, cheese and mayo. I called Rebecca while eating, like I have been doing since returning to work, and I quickly discovered that she had no clue as to what type of bread she had purchased. Apparently it was on the shelf in the spot where she is used to grabbing our normal brand, and she didn’t notice. After a couple of days of ‘bread’ sandwiches, I decided to see just how thick this bread was. I took a slice and stood it on its side, pulled out a steak knife, and proceeded to cut into it from the edge, all the way around. I was amazed to discover that I could easily divide the slice into two “normal” slices, without damaging either of them in any way, shape or form.

That may seem like a simple task, but I challenge ANYONE to take a normal slice of fresh bread, and cut it in half along its edge, without shredding it. Anyway………steak knife in hand….problem solved.

Speaking of work…….I’m not going to say that my new boss has been reading my updates, BUT…..

Work is great!
The long hours are great!
The customers are great!

E.V.E.R.Y.T.H.I.N.G. I.S. G.R.E.A.T.!!!

Seriously though, I have been learning a lot and I feel like my “retail juices” are flowing pretty well now. I am starting to get back into the swing of things, managing my work/life balance, so hopefully I will continue to find success.

Scott

P.S. So much for a quick, short update.

Sunday, September 28, 2008 5:31 PM CDT

Another long gap between updates……..sorry.

Such is life in the world of retail. Long hours, late hours, early hours, lots and lots of hours.

I don’t know if Murphy ever wrote a law pertaining to medical emergencies, but if he did, it surely would have sounded something like this…..

“All medical emergencies will arise at the most inopportune time of the day, usually in the evening or late at night, and almost always on a weekend when doctors are nowhere near their offices or their phones.”

(Let me wind back the clock to set up this saga for you.)

Zachary was supposed to have a couple of small cavities repaired about a month ago or so when we were in the middle of the blood and platelet drama. Because of his low counts, the dentist postponed that procedure until his counts rebounded. Well, his counts rebounded, so we were on the schedule for Thursday morning. Now, the last time that we were at the dentist, (when they found the cavities) Zachary was complaining of some hot & cold sensitivity in his front lower tooth. That was the tooth that had broken in half while playing soccer a couple of years ago. The dentist inspected it and felt that it was OK, but he mentioned that if the pain persisted, he would consider doing a root canal on it.

We showed up on Thursday for the cavity work and I sent Zachary back alone. About five or ten minutes after he got back there, the dentist came out to speak with me. He informed me that he wanted to postpone the cavity work and do an immediate root canal on the front tooth. He felt that the pain Zachary was experiencing was indicative of a dying nerve. The procedure didn’t take too long, and Zachary said that it wasn’t too bad. We left the dentist, I dropped him off at school, and all was well in the world. (Yeah right!)

After the anesthesia wore off, Zachary started to have a dull ache in his tooth. We thought that a little bit of discomfort was normal after that procedure, so we treated it with Tylenol and didn’t put too much thought into it. That plan lasted until Friday night at 11:30pm when Zachary woke us up practically in tears over the pain he was having in that lower tooth and in his jaw. I immediately called the dentist’s office and left a message on their emergency line. After waiting about 15 minutes, I realized that we were probably NOT going to hear back from them soon enough, so we called the local E.R. We asked about tooth emergencies, and we got the answer that we expected….”We don’t have a dentist on staff in the E.R., all we can do is pain management.”

Well, I can do pain management at home, without waiting for 8 hours to be seen, and without paying HUGE hospital bills. I flipped my mental three-sided coin to choose the right drug, and it came up with Tylenol w/ codeine. We gave him one, and that lasted him until about 4:30 or so when he needed another one. That second one got him to 8:30 when he and Rebecca left for his Saturday morning bowling league. I was still waking up, because I had to be at work at 1pm, and I wanted to get a few things done so that I could watch him bowl before going to work. Right after Rebecca and Zachary left the house, the phone rang….it was the dentist who was on call….she had just found the message and wanted to apologize for not getting back to us sooner. I filled her in with the details of what had happened, and her advice was to watch him for fevers, and any sign of swelling. If he didn’t have swelling, then there was a good chance that we could avoid an infection. I hung up with her and called Rebecca to let her know what the dentist had said. Before I could relay any of that conversation to her, she blurted out, “His mouth and chin area are swollen and puffy.”

(In case you are wondering, that was the EXACT moment when the $hit hit the fan.)

I told her to hang tight, I was going to call the dentist right back and then pick him up for an immediate appointment. (The dentist had given us her cell phone number, and she had said that if his tooth/mouth got worse, that she would meet us at the office and take care of it.) When I got her back on the phone, she told me to hang tight for a few minutes, because she wanted to speak with a specialist about Zachary. As luck would have it, she knew a dentist who specializes in root canals and is a leukemia survivor, so he was very aware and sensitive to the blood count/cancer issues that we were facing. After speaking with him, she called back to inform me that he wanted Zachary to do some warm salt water rinses and to keep an ice pack on his jaw/mouth area. He also said that if the swelling/pain got any worse by 2pm, that he should be seen right away.

I grabbed an ice pack and called Rebecca so that she could have him do the rinse while I was driving over. When I got there, he was bowling and didn’t seem to be in that much pain. Unfortunately, after about 10 minutes of holding the ice pack on his jaw, he started complaining about excruciating pain in his jaw/tooth. We quit the ice pack and he was barely able to finish bowling. I went to work on time, and after being there for about an hour, I got “The Call” from Rebecca.

“We’re at the dentist’s office; she is going to drill some holes in the tooth that is next to the one that had the root canal. It appears as though the second tooth has some swelling, like the nerve was under extreme pressure, trying to compensate for the removal of the first one.” After about 45 minutes, she called back to say that the procedure was done, and that there was a lot of puss and blood that came out when she was drilling, so there was definitely a lot of pressure, which would have been extremely painful.

She scheduled a follow-up visit for Monday morning, to re-inspect both teeth and to decide whether or not to do the second root canal or to just seal up the holes and move on. She also prescribed an anti-biotic to help prevent any infection.

The first root canal set us back close to $500.00. While we were there, Zachary was able to sell 2 books, so if he can sell about 40 more, I will be able to pay that bill when it comes in. I don’t even want to know what the Saturday visit or tomorrow’s visit is going to cost us. Needless to say, I will be pushing my books for years to come.

The good news is that since that emergency visit yesterday, he has not complained of pain. (He’s taking Oxycodone or Tylenol #4 for the pain, so I’m sure that is helping.)

I just looked at the front page of our Caringbridge site, and it looks like we will pass the 700,000 mark for visitors either tonight or tomorrow.

Thank you to everyone who has continued to check in on us!

NOW GET OFF YOUR BUTTS AND BUY A BOOK!!!! I’VE GOT DENTAL BILLS TO PAY!!!

(Just kidding, you don’t need to buy a book……..although, would it be such a bad thing if you did?)

We heard back from Philly and they are very pleased with Zachary’s blood counts. They want him back up there for testing the week of 10/6, so he and Rebecca will be flying up Sunday afternoon (a week from today) and then they come home Friday evening, after doing testing all week.

Zachary is pretty adamant that he does NOT want any oral chemo that is a liquid. (That would be the CEP-701.) He also doesn’t want to do any traditional chemo (I.V.), which leaves us will very few if any options. We don’t know if the Millennium drug is available yet, and we don’t know if he is eligible for the powdered Fenretinide therapy. With me being at work that week, and Rebecca up there with a combative Zachary in Philly trying to make heads or tails of everything, it should prove to be a challenging five days. (I’m thinking that it might turn out to be a good time for me take up a new hobby, liking drinking hard liquor, or at least wine coolers.)

My other drama for the week is another in a long line of pitiful examples of just how inept I can be.

I was online the other night, doing NOTHING constructive, and I decided to Google my name. I immediately found some links to quotes of mine from when we were in the middle of the law suit. I also found a link for my book, and a couple of other obscure links that weren’t interesting. There was one though, that caught my eye immediately. The tag line read:

“Visit Scott Finestone’s Facebook page.”

Hmmmmmm….very curious indeed….I don’t remember making a Facebook page. So, I clicked on the link and what did I find you ask? A Facebook page for a Scott Finestone who resides in Vancouver, Canada. Since I’ve never been to Vancouver, Canada, and the photo on the page looked nothing like me, I was able to ascertain that this person was a DIFFERENT Scott Finestone than me! (I’m pretty smart that way.)

Having never heard of another Scott Finestone, I decided to send him a message, to introduce myself. I clicked on the “send a message” link, and immediately I was informed that I needed my OWN Facebook page in order to accomplish that task. So I figured, what can go wrong? I went through the motions of creating a page, and I wasn’t really paying attention to what was going on. The first thing that I encountered was a message informing me that I had almost 20 people who wanted me to be their friend. I don’t know how that works, but it seemed like they had somehow entered my email into their Facebook system, so as soon as I created my page, it “knew” to notify me, and them, that I was onboard. That seemed harmless enough, but the fatal error occurred when I got a message asking if I wanted to notify a particular group of people about my page. Had I being paying attention, I would have noticed that the group of people who they were referring to was…….(wait for it….you know what’s coming….) MY ENTIRE EMAIL DIRECTORY!!!!!

I started getting emails from people who I haven’t spoken with in years. A few of Zachary’s teachers responded with, “We’re not allowed to use Facebook while at school, thank you for the invite though.” (How embarrassing?) Doctors, nurses, insurance providers……the list goes on and on and on and on. You name it, they got a message.

I had people writing on my wall……(I DIDN’T EVEN KNOW THAT I HAD A WALL.) I was being linked to new friends who I had never heard of, just because we listed the same city as our home town.

I know there are many folks out there who are loyal Facebook users, and I don’t want to offend anyone, so let’s just say for now that I am too busy with work to stay 100% up to date on the whole Facebook thing. I will try to check in and read the messages, but I can’t promise that I will know what in the world I’m doing on there for quite some time.

So, if you received an email from us inviting you to join Facebook or to accept us a friend on Facebook, I apologize for any inconvenience this may of caused you…….it was NOT intentional!

Scott (The inept one in Jensen Beach, NOT the other one in Vancouver.)

Monday, September 22, 2008 9:28 AM CDT

Sorry for the lack of updates this past week.

I left the photo of Zachary in his ROTC outfit in the album, so if you haven’t looked yet, it’s the third photo in there.

Medically things have stayed somewhat “calm” this past week. (Kaynahorah, ptuii, ptuii, ptuii.) Zachary is still battling with his sleep schedule. He stays up too late and then wants to nap during the day. We have been working with him on this with the hope of getting him to alter his habits so that he can be more productive with school work during the day.

His homebound classes have been going well, and I think he is beginning to get caught up. There is a small potential for some school related drama that we are hoping to iron out over the next several months.

It all started with an email from a friend of ours who lives on the west coast of Florida. She had been reading our journal updates and saw that we had some issues going on with school……so she emailed us with some advice regarding testing and other issues that come up for children in Zachary’s position. I printed the relevant portions of that email and showed it to our homebound teacher, who in turn recommended that we discuss the issues with Zachary’s guidance counselor at high school. I also sent a copy of the email to our local school specialist who is running one of the charities that has been with us since day #1 of diagnosis. The guidance counselor and our specialist both got back to us with interesting news. Zachary is currently “protected” by his OHI (Other Health Impaired) status. Because of that status, his Individual Education Plan has specific allowances included for him to ensure that he gets the necessary time and help that he needs while in class and for testing. All of that is great, until you read the fine print. Apparently, if the child does not ASK for the allowances enough, the school district will assume that the child no longer NEEDS them, and they will be excluded when it comes time for major testing, like FCAT, or SAT, or PSAT, or ACT. What those rules don’t seem to account for is the fact that children like Zachary want to regain some level of normalcy in their lives. He is now at an age where he does NOT want to be singled out, especially in front of his peers at high school. So, the likelihood of him asking a teacher to be tested separately, where he would be removed from the room to take a test, or to ask for some other accommodation that would shine the spotlight on him, is highly unlikely. He may even be able to squeak by during the regular class tests and get passing grades without taking advantage of any special accommodations, but when it comes to the more important tests, he clearly has demonstrated that he NEEDS help and more time. His last FCAT tests showed that he was barely at passing levels…..and that one was given in an environment where he was one-on-one with a teacher who could give him extra time, and any other necessary assistance that he required.

So, we are probably at the beginning stages of trying to map out a plan for his academic future that will include strategies for ensuring that when the time comes, he will get the help that he needs. This is definitely a work in progress that will not be completed any time soon.

As I prepare to reenter the world of retail (I am starting a new job today, going back into the realm of retail pharmacy management,) I have become increasingly sensitive to the customer service that I receive while shopping. I have always been a little more aware of the level of customer service that I have received, partly because of my earlier retail mgt. experience, and partly from owning my own business for 11 years. I have written about it before, but to enlighten any new readers who may be gracing our page with their presence, the mantra that I have lived by in both retail and wholesale business is:

“Never make it difficult for people to give you their money.”

The old standard of, “The customer is always right,” just doesn’t work in real world situations. But, if you create an environment where shoppers can easily find what they are looking for, do not have to pay too much for the product, and do not have to wait in long lines to pay for their purchases, then you will probably succeed. In other words, when someone is trying to spend their hard-earned money with you, don’t make it difficult for them to do JUST THAT!

Having said all of that, I recently had a bizarre experience with a local retail establishment. As many of you already know, I would NEVER use a company’s real name when disparaging them in one of my journal entries. I ALWAYS change the names to protect the non-innocent. (Did that come out right?) So, for this story, we will change the name of the store from Linen & Things to Things & Linens……that way you will have NO WAY of determining who I am writing about.

So, this fictional company, Things & Linens is closing their local store. Apparently they are closing several stores around the country, under a court mandated order. Some of their stores will remain open. Our local store has all sorts of signs that explain the discounts and how they are selling everything and closing their doors. Included in the signage is mention of the fact that all purchases are final, and no returns or exchanges will be accepted. I needed to find an easy way to get the wrinkles out of my dress shirts for my new job, so I ventured over and found a hand-held steaming device that supposedly is perfect for that task. The regular price of $19.99 had been discounted by 25%, so I could solve my problem AND save $5.00. I purchased that item along with a couple of other things that we needed for around the house and left the store. The next day, Rebecca and I decided to return to the store to look for more bargains. We found some more items that we “needed” and purchased them. Upon returning home, I decided to take out the steaming device to de-wrinkle my shirts. I followed the directions and set out to complete the task. After plugging the device in, I noticed that some smoke (not steam) was coming out of the top of the steamer. It smelled like wires burning. Not one to be deterred easily, I followed the directions and tried to use the device. Unfortunately, I could not get it to work properly. I repeated the process several times, but to no avail.

Knowing that the store did not want any returns, I called the manufacturer. They were less than helpful. Their representative made it clear that for the first 30 days, I had to return the product to the store where I purchased it. I explained the situation, but the guy was reading from a manual that clearly was missing the chapter on “What to do when the store is going out of business.” He kept repeating that I needed to wait for 30 days before talking with him. At one point, I asked, “So, if I hang up and call back in 20 minutes, and tell a different rep that we purchased this 31 days ago, they will help me?” His response was, “No, you need your receipt.”

Great, I had charged the purchase, and I thrown away the receipt, partly because I knew that it would appear on my statement, and partly because I knew that they were not accepting returns.

I called the store and was handed off to a manager. I explained the situation, including the fact that I had purchased it the day before, and that I had already tried dealing with the manufacturer. The manager told me to bring it back, and that they would try to get it working, or they would switch it out. (They still had some left.)

When I arrived, the manager was singing a completely different tune. He was BEYOND rude and unhelpful. The first thing he did was state, “These devices are tested by the manufacturer.” (Like I had nothing better to do than to rain on his parade. I wasn’t looking for a refund; I just wanted a working device.) He never tried to get it working or to see if it was broken. He blamed me for not keeping my receipt, which I had already explained to him. I told him that I could get a copy from my online statement, but that it would not be itemized, and the manufacturer would need that. He basically kept repeating how it was all my fault. I then asked for a copy of the receipt. He very rudely said, “We don’t have them, they are sent out.” (This was like having to spoon feed an imbecile……he didn’t seem to possess the ability to get from A to B to C….etc.) I had to say, “OK, you’ve sent them out….where did you send them to?” His response, “To our headquarters.” (Once again, he stopped there and didn’t see that clearly there was a way to explore this further.) Me again, “OK….WHERE do you send them to? Someone will be in receipt of them.” Him again, “They just went out yesterday, they won’t be there yet.” Me again, “OK, but they WILL get there eventually, how about you give me their phone number, and I’ll ask them to help me.” After that he just walked away…he didn’t say anything……after a couple of minutes he returned with a phone number written on a sheet of paper.

I called the number and was able to leave a message at their headquarters. Within a few hours, I got a call back from a very nice woman who was “shocked” at that treatment I had received in the store. She informed me that they had a district manager who was in charge of closing stores, and that they had a system in place for returns on electrical devices from closing stores….she couldn’t fathom why this idiot hadn’t mentioned ANY of that. She took my information and promised to look up the receipt in her system so that I could get it taken care of. I should know something this week.

The bottom line is that even though they had the signs stating that there were no refunds, I KNEW that they would have a system in place for problem merchandise, especially since they weren’t closing all of their stores. The last thing a company wants is for maniacs like me telling the world how inept they are and how they don’t take care of their customers.

My guess is that the manager is being “marked down” like all of his merchandise and that the company will NOT be finding a slot for him. He is probably there only because he has not found another company that is looking for an inept manager and he wants to keep working until they actually lock the doors. (That’s just a guess on my part.)

Scott

Tuesday, September 16, 2008 12:04 AM CDT

*NEW PHOTO IN ALBUM* *NEW PHOTO IN ALBUM*

In our never-ending battle to regain normalcy in our lives, we have been attempting to filter out the medical “background noise” while we have a few weeks off from treatment. This of course is an exercise in futility. After 8 ½ years of battling this monster, I don’t know how I could ever be duped into believing that Zachary’s cancer and/or medical issues would cooperate long enough for us to catch our breath.

Before you go and start panicking, there is no HUGE medical drama or saga that we are now engaged in. Zachary has once again started to experience leg/groin pain on his right side, (the same side where he still lights up on the MIBG scan), and he is still battling occasional headaches and fatigue. We have decided to make him take a short break from bowling to see if he did indeed pull a muscle, and if by resting his leg, we can heal the muscle. The doctors are convinced that this pain is NOT cancer related and that it is just a muscle issue. Zachary is convinced that he has lymph nodes growing like watermelons and that we should all panic. Rebecca seems to be siding with the doctors, but she is still somewhat sensitive to Zachary’s medical manipulation techniques….and as for me….well, I’ve decided to take up drinking as a new hobby. That way I won’t be so prone to hearing complaints, or feeling empathy….or for that matter, feeling anything else. (Just kidding…..I’m not drinking.)

We have been trying to get Zachary back on track with his school work, and that is still somewhat of a work in progress. He seems to be doing well in math (which he takes at the school), ROTC has been going fairly well, but he did have a problem on his last test that will need to be addressed. As for his homebound classes, his teacher has been working with him on English/Reading, and I think he is pretty caught up in there, but Biology has been a problem.

The school recommended that we have Zachary do his Biology via the computer learning software that they utilize with some of the students. The software provides online videos and lessons that the student can access from his/her computer at their convenience. It seems to be a better system than the virtual school one that he used last year. The only problem with it is, we have had a horrible time getting it loaded. Between the confusion at the beginning of his school year, and the problems loading the required plug-ins, he is now about three weeks behind. By itself, that would not have upset me too much. We are used to having him play catch-up, and we know how to make up for lost time when we need to. I however became very frustrated with the process of loading the software and configuring the computer for use with the program.

The program only allows for one computer to have access to the software. We chose the laptop, with the thought that when Zachary is out of town for medical visits, he could still be working on his assignments. The school provided us with a list of the plug-ins that are required to allow the software to do its thing. (I can always tell when a programmer has written out instructions for loading software, because they make assumptions about the knowledge level of the person attempting to load the programs that always seems to set me up for failure.) The plug-in list had 6 different “flash players”, “java scripts”, and “Adobe” thingies that needed to be installed. Not knowing one from the other, I did a search online to try and find them. I was able to locate 2 of the 6 pretty easily, and then things got interesting. I found that 2 of the remaining 4 were available, but only if I subscribed for them and paid a monthly fee. When I contacted our teacher and explained this, she informed me that all of the plug-ins were free and that I needed to keep searching. The other thing that I kept hearing from her was this…..”I have never had a family have any trouble loading these plug-ins. In fact, the last family that I worked with has less computer knowledge than you guys, and they got it done easily.” That is what she actually said……..NOW, this is what I heard. “You must be a complete moron. How stupid can a human possibly be? I’ve got 3 year olds who can load this stuff with NO issues, and you do nothing but complain.”

After more searching, I was able to find free versions of the 2 programs in question. The remaining 2 managed to avoid detection by my apparently infantile brain. I ended up calling for help to the support center, where I was informed that they do NOT speak directly with students at home; they are only supposed to support the school staff. We called the school, and they said, “We are only supposed to support the equipment here at the school, if you have problems at home, you need to call the support center.”

Hmmmmmm.

Is it just me, or is this a tune we’ve heard before?

If I had asked for directions, they would have said, “You can’t get there from here!”

Luckily I was able to find a nice chap at the support center who walked me through some trouble-shooting, and we eventually got it loaded. The sad thing is, once the software was loaded, the program only recognized 5 plug-ins. The 6th one is nowhere to be found and apparently is NOT needed. The other sad thing is that I needed to do major “back office” programming changes to our computer to get the thing to work. Changes that I would NEVER in a million years have figured out if the guy on the other end of the line wasn’t there walking me through it, step by step.

Did I mention that the school was the one that recommended Zachary do the computer class? Don’t you think it would be their responsibility to help us getting it up and running? (I did offer to bring the laptop into the school to have them look at it.)

The bottom line is that last night he was finally able to get into his Biology class online and start doing some assignments. Hopefully he will get caught up pretty quickly.

In other news, Rebecca is still working away on finishing her medical transcriptionist degree. She only has a few books/assignments left, so hopefully she will be done within the next several weeks.

I am still getting orders on my book. I have received some emails from folks who don’t have the funds right now to buy one, but have asked that I keep some in stock so that they can get an autographed copy once they are ready. My plan has always been to keep some handy, so that is not a concern. Anyone who is interested in getting a book can email us and I will provide the ordering information to them.

I have received some very nice reviews/comments from folks who have already finished reading the book. Thank you all for taking the time to let me know your thoughts. The only “negative” comment that I have received mentioned that they “loved the parts where I was writing about our experiences and how you can help newly diagnosed families,” but they thought, “The journal entries seemed to go on too long and there were too many of them.”

This is something that I debated about while writing the book. My thought was this……..instead of going back and trying to recreate the mindset that we had when dealing with the many issues, I felt that by including the journal entries that were relevant to the topic, folks would be able to get a better sense of what we were experiencing at the time things were actually happening. I also wanted to include as many of the funny entries as possible. As it turns out, the book is about half journal entries, so maybe I did include too many….I don’t know. I do know that I have heard back from several folks who have said that even though they knew some of the stories that were included in there, they were still laughing out loud while reading them. I took that as a sign that including them was a good idea.

I am still looking for comments (good or bad), and if you are concerned that you will get attacked if you post your comments in the guest book, just email them directly to us, and I will not mention them if you so request!

At the beginning of this entry I directed you to the photo album. The new picture is of Zachary in his ROTC outfit, so go ahead ladies, drool away for that man in uniform!

Scott

Thursday, September 11, 2008 6:09 PM CDT

I realize that I just updated yesterday, but when I’ve got news to report, it just burns a hole in my keyboard if I don’t get it all written out.

Zachary’s counts this morning were very encouraging. His platelets were up to 77,000, his HGB was a strong 12.1, and his ANC was about 1,700. The bottom line is he did not need any blood or platelets. I called Philly with the good news and waited to hear back from them as to when they would want us up there. (We were told late last week that they were shooting for the week of 9/21 – 9/26.)

The nurse practitioner called back this afternoon and said that they had just finished their bi-weekly meeting where they discuss the kids and come up with plans for treatment. While they were excited to see Zachary’s counts rebounding and responding to the stem cell infusion from two weeks ago, they were somewhat surprised that his counts had come up THIS quickly.

As I have mentioned before, we are looking at two protocols. The preferred one is the millennium drug, which is still not available. They are hoping to get past the administrative and regulatory hurdles within the next few weeks with the hope of being able to start giving the medicine in October. Meanwhile, we thought that we were a shoe in for the CEP-701, which is the oral liquid chemo that they had mentioned several times. Well, apparently things have changed. Now they are telling us that Zachary is on the waiting list for that drug.

What does all of this mean? Well, it means we don’t have a treatment plan for the immediate future. The good news is that they (Philly) feel that Zachary has received an excellent response from the two MIBG treatments. Furthermore, they informed me that when kids respond well to that treatment, they sometimes get benefits (disease still dying) from it 8 or even 12 weeks after treatment. That means that Zachary could still be getting a benefit from it through this entire month. The bottom line is that they are NOT worried about giving Zachary all of September off from treatment. If they were concerned, they would be recommending one of several traditional chemotherapies to be taken via I.V. (They are NOT doing that.) They have told us to hang tight, enjoy the time off, let his counts and body rebound some more from the MIBG treatment, and we’ll watch him closely until October when we’ll see what protocols are available.

Rebecca and I are SO good at sitting back and doing nothing (treatment-wise), so this should be a walk in the park. No more difficult than cleaning an aircraft carrier with gauze pads, or shaving a woolly mammoth with a Bic razor. (If that doesn’t provoke a visual, nothing will.)

Putting aside the obvious nervousness associated with doing nothing, Rebecca and I are obviously very pleased with the news that Philly feels Zachary is doing well enough to wait on treatment until October. Zachary on the other hand was pretty much a butt-head when I tried to give him the good news. Instead of celebrating the break in treatment or the good news surrounding the results from the MIBG scan, he wanted to focus on the fact that he is now insisting that he will, “Not do any liquid chemo….oral or I.V.” I told him that he needs to focus on the here and now and the fact that we don’t have to do treatment for several more weeks, and we only need to check counts once a week, which will save his veins from being obliterated.

Talking to a teenager is like trying to explain etiquette to an orangutan that is on crack cocaine. You put that animal in room full of delicate china, and something is going to get broken. (I was of course referring to the teenager….not the monkey.)

I’m hoping that getting some time off from treatment will give Zachary some time to reflect on just how lucky we are. Maybe by October he will be more “on board” with whichever treatment plan the doctors come up with.

In other medical news, one of our lurkers who purchased a book was kind enough to forward the link to the article which appears below. We were both encouraged by the story and excited to see that our two doctors in Philly are the driving force behind these new and groundbreaking research projects into neuroblastoma therapies.

(The following article appeared online at the NCI Cancer Bulletin web page. (Sept. 9, 2008 – Volume 5 / Number 18)

Gene Mutations Identified as Cause of Neuroblastoma
For more than a decade, parents of children with neuroblastoma have been asking Dr. John Maris what causes the cancer, and until now he has had no answer. But new research led by his team at the Children's Hospital of Philadelphia (CHOP) is starting to provide clues that could lead to a genetic test and a clinical trial as early as next year.
The researchers have identified germline mutations in the anaplastic lymphoma kinase (ALK) gene in the vast majority of families with the inherited form of the disease. The discovery has generated interest in the field because ALK is a known cancer gene (oncogene) and drugs against this target are in development. The ALK protein - a receptor tyrosine kinase - helps regulate cell growth and may be abnormally activated in cancer.
"This is an incredibly exciting discovery," said Dr. Susan Cohn, an expert on neuroblastoma at the University of Chicago, who was not involved in the study. "If we're lucky, the discovery will dramatically impact the way we approach patients with neuroblastoma in the future."
While familial cases of neuroblastoma account for only 1 percent of all cases, ALK mutations can also occur as tumors grow and spread in the more common non-hereditary forms. The researchers found ALK mutations in 12 percent of high-risk neuroblastoma tumor samples, and the gene is amplified (present in multiple copies) in up to an additional 5 percent of tumors.
Neuroblastoma arises in children in the developing cells of the sympathetic nervous system, and it often appears as a tumor in the chest or abdomen. Half of children with the disease have the high-risk form, which has long-term survival rates of only 40 percent at best and often resists standard therapies.
Reporting their findings online in Nature last month, the researchers concluded that ALK mutations appear to drive the disease in a subset of neuroblastoma patients. Even before the initial findings were presented at a scientific meeting last spring, other laboratories had implicated ALK mutations in the disease.
By early 2009, the researchers expect to have a genetic test available. The test could identify family members of patients with neuroblastoma who harbor ALK mutations. These individuals could be carefully monitored using noninvasive techniques such as ultrasound or a urine test. If the ALK protein turns out to be an important therapeutic target, testing could be applied broadly to guide treatment.
Dr. Maris and his coauthor, Dr. Yael P. Mossé, also at CHOP, are in discussions with a pharmaceutical company about opening a trial of an ALK inhibitor for children with neuroblastoma next year.
The ALK gene was discovered in 1994 in patients with a large-cell lymphoma. It has since been shown to play a role in multiple cancers, including lung and esophageal. In these diseases, ALK merges with other genes in "translocations" that drive cell growth by activating the ALK kinase.
To demonstrate a role for ALK in inherited neuroblastoma, the researchers scanned the DNA of 10 families with two or more affected members. Three inherited mutations in ALK tracked with the disease in eight separate families.
The researchers then analyzed nearly 200 high-risk neuroblastoma samples and found spontaneous, or non-inherited, mutations in 12 percent. An effort to characterize the full spectrum of ALK mutations and when the mutations occur is underway.
"There appear to be some mutations where all individuals who carry them will manifest the disease and other mutations that are less likely to cause the disease," said Dr. Mossé. It may be that a second genetic "hit," such as the amplification of ALK, is required to cause the disease in most patients, she noted.
An interesting finding of the study was that experimentally inhibiting ALK signaling reduced the proliferation of neuroblastoma cells, even in cells with no known ALK mutations. This suggests that targeting ALK may benefit patients with normal ALK genes, but the researchers caution that clinical trials are needed to answer these questions. This is likely to happen soon.
"Translating this discovery from the Maris laboratory into the clinic will be a high priority for neuroblastoma researchers," said Dr. Malcolm Smith of NCI's Cancer Therapy Evaluation Program.
Dr. Smith, along with Dr. Maris, leads the Neuroblastoma TARGET Initiative, which uses genomic strategies to identify and validate therapeutic targets for the disease. The group is already sequencing the ALK gene in additional neuroblastoma cases and other genes as well.
In a genome-wide association study published last May, Dr. Maris' group identified a region of chromosome 6 that may contain genetic variants associated with aggressive neuroblastoma. This study and the current one were completely separate, but each produced novel insights into the genetics of neuroblastoma, noted Dr. Maris.
"We know a whole lot more about what causes the disease today than we did a year ago," he said.
—Edward R. Winstead

If we can ride the wave of progress from the MIBG treatment into the millennium drug trials, we may then be able to use that drug to get us to where some of these newer therapies will be available. (Crossing fingers, toes, ears, eyes……..you name it, we’re crossing it!)
(Oh yeah….and don’t forget to throw a few “Kaynahorah, ptuii, ptuii, ptuiis in….just for good measure.)

This past weekend was the annual Connor Moran Children’s Cancer Foundation outing to the Rapid’s Water Park. We have attended that event pretty much every year since Zachary was diagnosed. The park is a lot of fun; they’ve got tons of rides and a great lazy river that takes you casually around the park on tubes. I’ve written about the park before. This year’s outing was phenomenal. The weather could NOT have been any better. Sunny and 95 degrees with almost no clouds to be seen in any direction…..and for some reason, the park was almost empty. We have been there when the lines were 45 minutes to an hour to get on some of the rides….this year you could get right back on a ride with almost no wait. The kids had a blast.

I had one little snafu that really isn’t even worth mentioning, but some of you SEEM to enjoy making fun of my gaffes, so here goes. When we were done at the end of the day, we all needed to change our clothes for the ride home. When it was my turn, I took my dry clothes and headed off towards the bathroom that I had used earlier in the day. Oddly enough, the men’s and ladies rooms share a common entrance area and then split off. I hadn’t noticed that odd fact earlier in the day, so when I rounded the corner, I saw the men’s room sign and turned in to find a stall to change in. After rounding the corner, I immediately noticed a girl in a bikini standing there looking in the mirror, oblivious to my presence. My first thought was, “What a moron…..can’t she read? What kind of idiot girl wanders into a men’s room? That can be dangerous.” Then the logical side of my brain said to me, “You moron, girls do NOT make those kind of mistakes. Especially young girls in bikinis…..which means that YOU are the moron who has wondered into the wrong bathroom.” I did a quick and quiet exit and sure enough, I was in the ladies room. No one seemed to notice my mistake, (including the bikini-clad girl who was already in there), so I’m going to say for the record…..”No harm….no foul.”

Yesterday I wrote about Zachary in his uniform. When I picked him up from school, he informed me that he might be on TV on Thursday at the school. I asked what TV they had there, and he explained that there are camera crews of students who are taking TV classes who travel around the school looking for stories that they can air the next day. My first thought was that my son had done some amazing deed that had been caught on tape. Like…..maybe he had caught some damsel in distress who had fallen from an upper stair well……or maybe he had solved some impossibly hard math problem like Matt Damon did in Good Will Hunting…….or perhaps he had recited some great speech from memory and had impressed the school so much that they felt compelled to show him on TV……ANY of those would have been OK with me. But, (there’s always a ‘but’….isn’t there?) Our little cherub was walking from one class to another and his nose started to run. He was out of tissues, so he ran into the restroom, passing a TV camera crew on his way in. After getting a tissue and taking care of his nose, he exited the restroom, only to come face to face with the would-be reporter who said, “Do you realize that you just went into the girl’s bathroom?”
(Must be hereditary!)

I told him that when he got to school today that if any of the administrators gave him a hard time about using the girl’s room, he was supposed to say, “It runs in our family….my dad did the same thing on Sunday at the Rapids!”

Scott

Wednesday, September 10, 2008 1:31 PM CDT

Good news! On Monday we didn’t need platelets. We will recheck tomorrow morning up here again (we’re hoping that he won’t need anything and that it will save us the trip to West Palm Beach.)

Zachary’s platelets were up over 60,000, so hopefully that trend will continue. If his counts are good tomorrow, then we will be booking the return trip to Philly for the week after next. They are anxious to get their hands on him for an evaluation so that we can start a new protocol. The Millennium drug is still not available yet, so I am guessing that we will need to do at least one round (about a month) on the CEP-701 (oral liquid chemo that he doesn’t want to do) until we can switch. We’ll know more on that when Rebecca and Zachary get up to Philly.

Zachary has been doing pretty well at school. He feels that he is tops in his math class, getting his work done before the other kids and getting great grades. Even with the time that he has missed, he seems to be able to get the work done and stay on top of things. In his ROTC class he has had some issues. He didn’t want to get his hair cut, or wear the uniform. I was able to get him to cut his hair, and it looks great, and then I was able to get him to wear his uniform, threatening that if he didn’t, he couldn’t bowl with the high school team. He looks great in the uniform, and today when he wore it I think he actually started to feel some pride in dressing up that way. I’ll get a picture of him and post it in the photo album for everyone to see. In his homebound English class he is reading the stories and answering the questions, staying on track….and today we got him set up with the online biology class, so he will start that today or tomorrow. All in all, I think that he likes high school MUCH better than middle school…there seems to be a lot less nonsense and trouble there. Hopefully that trend will continue.

One of Zachary’s elementary school teachers ordered a book, so this morning on our way to school, we stopped by to visit. As luck would have it, the teacher was up at the front office when we arrived, so we were able hand deliver her book to her. The staff and teachers who were around couldn’t believe how great he looked in his uniform. He has grown up so much; they were real excited to see him. Being the little salesman who he is, he sold another two books while we were there. (He gets a commission for every one that he sells, so he’s been pushing them hard!)

Zachary got to bowl for his team yesterday. The school that they were competing against only had three players, so they had to forfeit, but they still bowled the three games. Zachary got to bowl in the third match. He only scored a little over 130 and was disappointed, but his team would have won even if they had gone against four players. Being the youngest on the team he still needs to learn that you don’t always get a high score, and that you need to brush off bad shots and move on. He’s pretty hard on himself when he doesn’t bowl well. We were clapping and encouraging him, but he still was a little bit down after the match. By dinner time he had rebounded, so hopefully this isn’t a trend that will continue. His team is now 2 -1!

In unrelated medical news, I just had some blood work done to check on the possibility of me having the JAK2 gene. It can be passed down, and there was some concern of me and/or my brothers having received that gene. Thankfully the test came back negative. The REALLY SCARY news came on the answering machine with the results from that test, when the physician’s assistant left this message: “Mr. Finestone, this is Jen from the doctor’s office, your JAK2 test came back negative, but your blood work shows that you are anemic, so we need to get you in for an exam and further testing right away!”

Oops. Do you think that I should have told them about donating 15 gallons of blood three days before the lab took a sample for the gene test? (Actually it may have only been a bag of blood, but it felt like 15 gallons, so that’s what I’m telling everyone.) I called the doctor’s office today to let them know that while I am NOT a licensed physician, I’m fairly certain that my counts looked goofy because of the blood that I had donated three days prior to giving a sample for the lab. If however, they were still concerned, they could call me and I would show up for an examination.

We’ll see tomorrow when the PA gets back into the office if she wants to see me for follow-up.

With less than 60 days left in the political race for the White House, I guess it was inevitable that I would comment on some of the goings on. I don’t know if I will ever endorse one side or the other, but I do find it interesting that the biggest news today revolves around pigs and lipstick. I don’t know which side is dumber, the Democrats for making the comment, or the Republicans for blowing it way out of proportion. I guess that’s modern politics. (Please do NOT feel obligated to comment on politics in the guest book. I am NOT looking to be swayed one way or the other by any of my faithful lurkers.) And speaking of lurkers, has anyone noticed that we are mere days away from hitting the 700,000 mark? (Let’s see, if I check on the page 2,000 times each day over the next four days, we’ll hit the mark before the weekend is over.)

Gotta run……I’ve got work to do!

Scott

Saturday, September 6, 2008 11:11 AM CDT

The contest is over, and we have a winner….but….first things first!

Medical update:

It has been a week since I last updated, sorry about that. With the holiday last Monday, we weren’t able to check counts until Tuesday. As expected, Zachary needed platelets. Yesterday we rechecked counts and he needed two units of blood, and one bag of platelets. We recheck on Monday. Overall he has been feeling pretty good. He got this cold that is going around, and of course, gave it to me. So I have been congested all week, while he is now mostly over it. His high school bowling team lost a close match on Thursday, but they won on Tuesday...(Zachary hasn’t competed yet), but he is enjoying being a part of the team. Today was the start of the fall recreational bowling league, and it looks like they’ve got a great group of kids signed up for it, so that should be fun. We recheck counts on Monday, (unless hurricane Ike turns back towards the north and comes our way), so I will have more news on blood counts next week.

Several people have emailed us or written in the guest book asking how we made out with Fay here in my neck of the woods. We ended up getting 16 inches of rain, which flooded our streets. I could have kayaked from my house 4/10 of a mile to my friend’s house, had I wanted to. With the pickup truck, we were still able to get around.

There were 13 correct guesses for my t-shirt contest. The correct answer was……(drum roll please)…..ALL THREE! Yep, all three happened just the way I wrote about them. I placed all of the correct names into a bowl, and Zachary picked one out (without looking). And the winner is………………………….

Rosie, from Windham, Maine! (Rosie, I still have your address from your book order, so I will ship your t-shirt out Monday…congratulations!)

Now that folks have been receiving their books and actually reading them, I have some REAL reviews to share with you. Here are a few of the comments that I have received:

“I'm finished with the book! It was so well written and unbelievable how much you have all endured over the years! Continuing to always keep your family in my thoughts and prayers!”
Sherry - Palm Beach Gardens

“Thank you for getting the book to me so quickly! I have read the whole thing during hurricane Gustav and no electricity. You did a wonderful job on it. It brings perspective into my life. Thank you again.”
Kim - Lecompte, La
“P.S. As always - I keep Zachary and your family in my prayers daily.”

[Written to my parents]
“I wanted to tell you that I have seldom read a more touching and magical book than the one your son sent to me. It is, of course the story of an ongoing nightmare, but written with such style and feeling that it feels as if one were participating. While you have given me brief summaries along the way I now know more than I wanted to. What amazes me most is that Scott manages to retain the sense of humor that permeates the book and makes it human. It is also clear that perhaps the most important reason that Zack is alive is the extent that Scott and Rebecca fought for him all the way along.
It's a perfectly astonishing tale and beautifully told.”

Peter Winter, MD - Pittsburgh, PA

Those are just a few of the comments that I have received. I am VERY grateful to everyone who has purchased a book, and for those of you who enjoyed it, and have taken the time to let me know your thoughts and opinions…….THANK YOU, THANK YOU, THANK YOU!!!

I really do appreciate getting the feedback from all of you.

Scott

Saturday, August 30, 2008 12:50 AM CDT

We are home from Gainesville, (actually we got home yesterday) and all is well.

The stem cell procedure went very smoothly. There was a little more to it than we had anticipated, but in the end it all worked out. Our day started at 7:45am when we arrived at the outpatient transplant clinic. The nurses there did the usual, weight, temperature, blood pressure, etc., then they started an I.V. line in his arm. Unfortunately, the first one did not take. His left arm would not cooperate and after some mild torture with a needle, they moved onto his right arm and found a good vein. His counts came back showing that his platelets had actually started to recover a little bit, but he still needed blood. They ordered a unit of blood and notified the stem cell clinic so they could prepare for our infusion.

With the pretreatment medications and the slow drip of the blood infusion, we didn’t finish that part of it until about 2:30pm. The stem cell part took until about 5:00pm. (They make you wait an hour after getting them to ensure there are no problems.) While getting the stem cells, they attach leads to the patient to monitor heart function. They also closely watch blood pressure and temperature, checking every 15 minutes or so. With the Benadryl in him from the pretreatment, Zachary slept like a baby through most of the infusion. They used ear thermometers, so he barely budged when they would check his temp.

The other interesting news we got came from the stem cell technician. She informed us that when they thawed the stem cells, they did a viability test where they stain a sample from the bags, to see how many are dead. Zachary’s cells showed that they were over 90% viable, which is a very good thing. They expect us to start seeing results within 2 -3 weeks. They ended up giving him about 3,000,000 cells. They’ve got a little more than that left over, so he’s got enough for one more stem cell infusion if we ever need it.

Thankfully Zachary never experienced any nausea or other problems from the infusion of stem cells. UNFORTUNATELY, we did get to experience the one side-effect that you CANNOT avoid when receiving stem cells. Apparently stem cells are stored with a preservative that has a horrible odor. Once they start the infusion, you cannot hide or escape the odor. They also told us that for 24 – 48 hours, Zachary would smell like the preservative. No matter how much he bathed, brushed his teeth, or sprayed Axe body spray all over himself, the odor was there.

I have thought long and hard on how to properly convey to all of you what this odor is like. The nurses tried to dismiss it as a “garlic-like” odor, but I’m here to tell you that if I were a clove of garlic, I would be HUGELY insulted by the comparison. The smell was so overpowering, that when nurses would walk into the infusion room, (Zachary was sitting in the first chair, next to the door,) they would wrinkle up their noses and get that look on their faces that says, “Who farted?”

For those of you who have seen Silence of the Lambs, you may recall that scene where they prepare to examine the dead body of the girl found in the river. Prior to beginning, they all smear that special gel under their noses that is supposed to protect them from the overpowering odor that the dead body emits. Sadly, we didn’t have access to any of that gel. There came a time yesterday afternoon when I actually contemplated dipping my finger into some poop and rubbing that under my nose, just to escape the stem cell preservative odor and to try and keep it from penetrating into my brain.

For the ride home on Friday, we immediately stopped at a gas station to get an air freshener for the truck. Thankfully it kept us from sticking lit matches up our noses to burn out our smell receptors.

The good news is that this morning, the odor is all but gone.

On the lighter side of things, I have three stories from our trip that I will now tell you. Your job is to try and figure out which (if any) of the three really happened. It is entirely possible that more than one actually took place. We were just cleaning out our spare bedroom and I found the last CSC t-shirt that we have in stock. It reads: “Someone I care about got cancer and all I got was this lousy t-shirt.”

So, all of the correct guessers will have their names placed in a hat and a winner will be drawn. I will even mail it to you at no charge! Erin, I am sad to report that you are NOT eligible for this contest. You possess inside information that would make it unfair to the others if you participated. (Erin was kind enough to spend time with us during the infusion at Shands, and then we went to dinner with her and watched a rented movie. We had a really good time!)

OK….here we go….three stories….and your job is to write into the guest book saying which ones (if any) really happened.

#1). On the drive up to Gainesville, we drove past a field that not only had cows and horses, but it also had buffalo and zebras.

#2). While eating dinner at Olive Garden, our server was a trans-gendered man who was built like a linebacker and was wearing more makeup than a $5.00 whore. (Not that I have ever met a $5.00 whore, but we have cable TV, so I’ve SEEN things.)

#3). While walking around the mall, we were passed by a man who looked to be about 95 years old and was wearing a skin-tight pink t-shirt that read, “Kate Perry”. (Kate Perry is the singer who has a current hit right now with “I kissed a girl.”)

There you have it…….put on your thinking caps and make your guesses.

In book news, I am pleased to report that I am now an international bestselling author. (Actually just an author who has sold books in other countries….but the “bestselling” part sounded really cool.) I have now shipped books to both Canada and Australia. (Maybe I’ll add a note in my book that reads, “Published in two continents and three languages!) (It’s not my fault they read English in both Canada and Australia!)

Scott

Wednesday, August 27, 2008 7:17 AM CDT

Results………………finally!!!

I think the best way to give you results is to type exactly what the doctor wrote to us…..that way you get to experience it like we did!

“Zachary has had a tremendous response to a second MIBG therapy. From the scan I saw, he has only a faint spot in his left groin and nothing else that I could see. I strongly recommend that Zachary get stem cells ASAP. Please let Zachary know I think he is doing great!”

Obviously we are very pleased with this news. When Zachary started having some pain in his leg a week or so ago, he was convinced that the cancer was growing again. Now that we know it isn’t, I think it helps to validate the sacrifices he made by going through a second round of MIBG therapy. By killing off more disease, we have bought more time. More QUALITY time! Now we can focus on getting his blood issues resolved, and then move onto the next therapy…..hopefully one of the ones that we can do at home that won’t beat him up too much.

We’ve already been in touch with Shands Hospital in Gainesville, Florida where his stem cells have been sitting on ice for the past 8 years, and they want us up there tomorrow morning at 8am sharp! We will leave later today, (its 3 ½ hours away), so that we can get to where we need to be in the morning without having to leave Jensen Beach at 4am. Zachary will probably need platelets and blood too, so they have planned to keep us most of the day. We’ll more than likely stay over, and then come home early Friday.

I can already hear the wheels turning in some of your heads. You’ve got questions about the stem cells and you demand answers. OK…let’s see if I can predict your questions and then answer them, to save us all a lot of time.

Q). How does the hospital give the stem cells to Zachary?
A). They are administered like other blood products, through an I.V. They will pre-treat him with Tylenol and Benadryl and then hang a bag of stem cells (or push them via syringe) over 30 min. – 1 hour.

Q). If they are giving him his stem cells, why does he need platelets and/or blood?
A). The stem cells are the building blocks for the White & Red blood cells and platelets. They take about 2 -3 weeks to set up shop and to begin producing the cells that he is having trouble making on his own.

Q). Does that mean he will still need transfusions while that process plays out?
A). Yes. He will more than likely still need platelet transfusions until he can maintain about 20,000 or so, 3 days after getting some. (Platelets last 2 -3 days, so after that time period, if he is above 20,000, then he more than likely is starting to make his own.)

Q). Are there side-effects associated with receiving stem cells?
A). Because they are his own cells, I do not believe there is any risk of GVHD (graph versus host disease) where a patient rejects donor cells. They do use a preservative that is mixed with the cells that has a nasty odor and can cause nausea, so they will also pre-treat with Zofran, to help prevent that from happening.

Q). Who won the 1991 Stanley Cup?
A). The Pittsburgh Penguins.

Q). Will Zachary be able to attend school after getting his stem cells back?
A). Zachary will be able to attend school as long as his counts are high enough where he can fight off infection.

Q). What treatment will he be doing next?
A). That has NOTHING to do with the stem cells….you’ll just have to wait for me to write about that in the “regular” journal section.

(Back to the regular journal section.)

We are still looking at the CEP-701 protocol which is an oral chemo that we can do at home. It would still require a trip to Philly for evaluation and base-line testing, but then he would be at home. You can read more about that protocol at: www.nant.org (New Approaches to Neuroblastoma Therapy.)

Zachary attended high school for the first time yesterday. As I wrote previously, he has one academic class (math) and one elective (ROTC) that he will be taking at the school. Reading and Biology will be done through the hospital homebound program. It is still a work in progress, but I think he liked being there yesterday, so hopefully we can assimilate him back into school as his body recoveries from the MIBG therapy.

Book News!

Well, folks have been receiving their books and the reviews have been pouring in from around the country! Here are just a FEW of the MANY comments that we have received in the guest book:

“Scott’s book is amazing….it has pages and everything!”
Shirley – Wichita

“The book is written in English……I can read English!”
John – Toronto

“Scott’s picture on the back makes him look like a serial killer, but it’s in color, and I like color pictures!”
Amy – Former Czech Republic

“The pages are numbered, so you’ll always know where you left off when you fell asleep trying to get through it!”
Richard – Camden

“I ordered 20 books, and now I can heat my house by burning them!”
Jenny - Alaska

“The pages are written on a soft paper that is easy on the butt.”
Dirk – Sing-Sing Prison

So, there you have it! Rave reviews across the board. Not a SINGLE bad comment in the lot!

I sent everyone an email reminder who had asked for a signed copy. There are still many of you lurkers out there who have not responded. (Buyer’s remorse probably!) Not to worry! I plan on stocking books here, so that anyone who wants one signed by us will not have to wait! So, please do not feel pressured to get one until you are ready. (Between the economy and fuel prices, I recognize that my book may NOT be on the top of the list of necessities.)

I have posted the ordering information too many times already, so if you don’t have it, just read one of the past few journal updates, or email us directly and we will help relieve you of your hard earned money. (srfinestone@hotmail.com)

As I wrote earlier, we will be gone until Friday….so I guess you will all be expecting some sort of update over the weekend, letting you know how the stem cell thingy went. I will try to deliver on that.

Scott

Friday, August 22, 2008 4:39 PM CDT

OK…..we’ve got a lot of topics to cover today, so please try to keep up!

Medical Update:

(I’m a firm believer that SOME news is better than NO news, so please bear with us as we navigate these new and unchartered waters.)

Zachary’s platelet count has still not recovered. He is getting two transfusions a week, and I’m guessing that if we were to check three times a week, they would be giving us more. He doesn’t seem to be able to get above the 7,000 – 12,000 range. We have been operating under the assumption that his body just hasn’t fully recovered from the MIBG therapy, but as part of our “Parent Re-education Conditioning & Cancer Brush-up Course”, we have learned that some patients can develop a sort of “resistance” or lowered benefit after receiving many transfusions. That is more than likely what we are experiencing right now.

Meanwhile back at the ranch…….we are waiting to hear from Philly as to what their impression is of the MIBG scan that we did this week. They should have received the disk today, so we may not hear from them until next week. Our local doctor feels that the scan is consistent with the last one that we did down here, meaning that Zachary may still be stable. (Stable is good….improvement is better.) I spoke briefly with our nurse oncologist in Philly today and she gave me a synopsis of where we stand. If the new scan were to show any new disease progression, they would change their original recommendation of going to a new therapy, and instead ask us to return to Philly for an immediate third round of MIBG therapy, followed by stem cell recovery. (I heard the “third round” thing and was instantly freaking out, until she added the part about the stem cell recovery.) They are fully aware that another round would knock him down to where he would NOT have any chance of recovering on his own.

If the scan is stable or shows any improvement, then we are no longer under any pressure to jump immediately into another treatment. Under that scenario, they may consider having us get the stem cells in an effort to boost his system. Once he has a platelet count of 50,000 – 75,000 (without transfusing), then he could return to Philly for a full workup and prepare to start the CEP-701 or the Millennium drug, (another neuroblastoma treatment that should be available very soon.)

The other issue that we are facing now is Zachary’s veins. When we started checking counts up here near home, the goal was to save Zachary from the long trip twice weekly, and to save us some gas money. (The hospital is over an hour away from us.) What we didn’t count on is him needing transfusions twice a week. What has happened is that we check counts in the morning on Mondays where they stick him in the arm, and then we drive down to Palm Beach, where they stick him again to transfuse him. Then on Thursdays, we check counts near home, where they stick him again, and then we AGAIN drive down to Palm Beach where he gets stuck a fourth time for the week. Zachary’s arms are getting the crap kicked out of them. He looks like he’s been doing heroin or something.

While I was on the phone with the nurse in Philly, I brought up this concern and I suggested that we stop checking counts locally and just start assuming that he will need to be transfused. That will save him two sticks each week, and if (WHEN) we get out of this cycle of needing platelets, we could just go back to what we were doing. We’re having to make the drive twice weekly regardless right now, so there really is no reason to put him through the extra torture. We definitely do NOT want to even entertain the notion of going back to another port. He has had one on each side of his chest, so I don’t even know where they would place one….not to mention the fever concerns, infection, etc. We just don’t want to go down that road if we can avoid it.

So that is our medical news. Not complete, but somewhat informative I hope.

School News:

School this year is proving to be a bit more challenging than it has in past years. We’re dealing with a new school (high school), and new people who don’t really know us. Zachary is supposed to be signed up for two classes that he will attend in the afternoons, and then the hospital homebound program is supposed to be coming to our house for the remainder of his schedule. School started on Monday, and then of course we got hit by tropical storm Fay, so our schools were closed Tuesday and Wednesday. Monday and Thursday were transfusions days, and today we knew his counts hadn’t come up enough to risk letting him attend school, so he hasn’t been there all week. Last night was the open house, so we attended, and met all of his teachers. We wanted to introduce ourselves to all of his teachers, because some of them will be working with the homebound teacher to coordinate what work he should be focusing on. (It sounds good on paper…but something got lost in the translation.)

We spoke with homebound today, and they were “waiting to hear from the high school as to what Zachary’s schedule was and what classes he would need instruction in.” When we were at the open house last night, we spoke with his teachers, and they all said, “We didn’t even know about Zachary, no one has contacted us regarding his schedule or needs.” Apparently there was a disconnect somewhere. Unfortunately, we know all too well that with Zachary’s medical issues, he IS going to fall behind, and he WILL face many challenges when it comes to trying to keep up with his class. Starting off behind the 8-ball was not what we had hoped for, but we can’t control the weather, and we certainly can’t control a system that moves at its own pace.

I AM pleased to report that everyone who we met at the high school, from his teachers to the principal was very supportive and encouraging. Everyone seems to be willing to help us make this all work. Once again, our concern is that by the time we get this bus moving, the wheels will have fallen off. We are scheduled for an IEP meeting on Monday where they will discuss his needs and such. Zachary will probably be in Palm Beach getting more platelets, so one of us will be with him, and the other will be flying solo at the high school.

I have tried to avoid stressing out too much when it comes to school issues……my thinking has always been, “I need to keep him as healthy as possible, and things like school will play out as they will.” The problem with that mindset is that he is now in the ninth grade. He needs to start acquiring skills that he will need as he gets older. He is definitely lacking in many of the social, educational, and societal skills that are needed to make it in this world. (Being in constant treatment for 8 ½ years has obviously made it difficult to stay on top of all aspects of his upbringing.)

I will keep you all posted as this school story plays itself out. I remain optimistic that we will find a happy medium and that we can get him back on track.

Book News:

I received several large cases of books yesterday, and I am pleased to announce that everyone who has paid for their book will be receiving it shortly. ALL PAID ORDERS HAVE BEEN SHIPPED!!!!!

If you are one of the many folks who put in a request for a signed copy, and you have not paid yet……….you have a few options. You can mail a check for $22.49 (that covers the book and shipping) directly to us, or you can go on PayPal and send the $22.49 directly to our account at:

srfinestone@hotmail.com

Our home address for you check mailers is:

Scott Finestone
650 NE Lima Vias
Jensen Beach, FL 34957

I still have email addresses for everyone who asked for a signed copy, so I will start sending out direct messages to remind you that I have not received a payment yet. If you have mailed or PayPal’d a payment, and you do NOT receive your book by next Friday, let me know. (I am hoping that it won’t take longer than that for them to get there.)

Thank you again to everyone who has ordered from us. I am VERY anxious to hear from all of you once you start to read the book.

Scott

P.S. My back is feeling better, so Zachary is back on top for Olympic gold this week. (Actually the International Olympic Committee has informed me that my previous gold medal from last week when my back was really bad is under investigation and may be taken away from me. Apparently to be eligible to compete for a medal, you have to be no older than 18 years of age during the year that the Olympics takes place. I was able to show a passport where my birthday is CLEARLY listed as 2/11/90, making me 18 years of age! Unfortunately, some of the judges noticed that in addition to being bald, with graying hair on my chest, and an aging body that I probably couldn’t get most 60 year olds to trade for, I don’t exactly LOOK like I am still 18 years of age. With no other means for showing proof, I overheard them talking about doing some carbon dating procedure on me. (Something about cutting off a toe, and then sending it away to a lab for dating.) Either way, I’m guessing that I’m screwed!

Tuesday, August 19, 2008 4:51 PM CDT

We are almost midway through the second week of our medical Olympic competition here at the Finestone abode, and things are looking drastically different than they did last week. Here is the current medal count:

Scott – 1 Gold
Zachary – 1 Silver
Rebecca – 1 Bronze

As with any competition, things can change quickly. I, for instance, was quite comfortable with my lead, thinking that I was going to wrap up another gold without any problems. Rebecca was pretty much unchanged, so she knew that she was probably not going to have a chance for gold, and Zachary was chugging along, oblivious to the goings on around him.

Over the weekend I tried to take it easy to protect my back, and I have slowly improved each day. I still have some pretty intense pains on occasion, but for the most part I am doing alright. Sitting up in a chair for long periods of time has proven to be the biggest challenge. It seems that after 30 minutes or so, I start to really feel my back acting up.

Zachary was supposed to have rebounded with his blood counts by now, but over the weekend we had a feeling that he was still going to need transfusions, based on how lethargic he has been. Yesterday we checked his counts locally, and we were pretty much right on target with our assessment. His ANC was 1,200 (Not great, but not terrible either,) his HGB was 8.4 and his platelets were…….(drum roll please), still only 10,000. (We are absolutely STUCK on that number.) So, we called our doctor in West Palm and they told us what we had already surmised; “Zachary needs a bag of platelets and two units of blood, come on down!”

Zachary and I made the trip down and spent the usually 5 hours or so getting the three units of blood products. His local doctor examined him, and even though Zachary’s leg pain has been slowly improving, she informed us that she has been communicating with our Philly doctor and that they have requested that we get an MIBG scan down here, this week. They want to make sure that there is no progression of disease.

So, our travel plans for next week have been changed. They do NOT want to do a bone marrow test until his platelets are above 50,000 on their own. They will look at the MIBG results from the scan that we are scheduled to get tomorrow, and then they will assess his blood counts from the Thursday morning checkup……after that, they will be making a determination as to whether we should travel to Gainesville next week to get some stem cells for him. If we do need to go, it should only be a day or two up there, hopefully without major drama. (Kaynahorah, ptuii, ptuii, ptuii.)

As much as we would like to hope that his counts are rebounding, we got a little clue today from the drive down to Palm Beach for the MIBG injection that his platelets are more than likely still very low. He fell asleep in the back seat of the truck and had his left cheek resting on the seat cushion for about 45 minutes. When we woke him up at the hospital, he had a beautiful red spotted pattern on that cheek. (Petechiae.) Not a good sign, keeping in mind that he just got transfused with platelets yesterday!!!

Clearly with this news in hand, the Olympic judges had no problem giving the gold medal to Zachary this week. As for the silver and bronze, things were not quite so clear.

I had my follow-up with the orthopedic surgeon this morning. (The same doctor who diagnosed Zachary and probably saved his life 8 ½ years ago.) He is pretty confident that I am experiencing a muscle spasm and that it is NOT nerve pain that I am having. They gave me a shot of steroids, (another one in the ass) and prescribed a 6-day oral steroid course. He also wants me to keep taking the Naproxen (anti-inflammatory) until it gets better.

With my improvement, and Rebecca’s somewhat less dramatic week so far, the race for silver and bronze was up for grabs. In a quirky coincidence, we actually ended up tied for second, not unlike the USA and China girl gymnasts did last night for the gold. UNLIKE the stupid Olympic process where they eliminated the lowest score which gave the China girl (12 years old at most) enough of an edge to capture gold, I came up with a much more fair and reasonable way of determining who would get silver and who would get bronze. I did what the Olympic committee SHOULD have done.

Rebecca and I entered a caged-off boxing ring armed with daggers, knives, and brass knuckles. The last one standing after 10 minutes got the higher medal. Needless to say, I’M WEARING SILVER TODAY BABY!

Can you picture that American gymnast and the little 5 year old from China going at it in a cage fight………we would have had the gold medal in less than 30 seconds.

There you have it, unless we have some drama tomorrow, we will just do the MIBG scan and not mess with blood counts. Waiting until Thursday gives us a much better chance of making it through the weekend without having to go to the hospital for transfusions.

Book News:

My publisher has informed me that my first shipment of books was sent out on Friday, so I am hoping to have them within the next few days. If you have mailed a check, or paid through PayPal, then I have already printed your shipping label and will be sending your book out A.S.A.P.

Scott

P.S. Thank you to everyone who took the time to visit Carson’s page and post a note in their guest book. I stopped in there yesterday and noticed that a few of you were kind enough to help us out with that. I know how much it means to families when they see how many folks out there are keeping them in their thoughts and prayers. If you didn’t see that link, here it is again:

www.caringbridge.org/visit/carsonruffa

Friday, August 15, 2008 12:52 AM CDT

Another week has gone by, and more drama has occurred in the Finestone house.

As you already know, Zachary got platelets on Monday. He seems to be stuck at the 10,000 mark, unable to get his internal platelet factory up and running enough to bring him back to safe numbers. After getting the infusion, we felt pretty secure with the knowledge that he would get through until Thursday without any problems. (Nice try.)

Tuesday Zachary and I were at his high school, waiting in line for him to get his photo taken for the school ID that each child is required to keep on their person while attending school. There were about four kids in front of us, so we were sitting down, waiting for the line to start moving. Without any warning, Zachary looks over at me and says, “Dad, I taste blood in my mouth.” As he is saying this, I was able to clearly see a copious amount of blood mixed in between teeth. I grabbed him and escorted him out into the hallway where I was unable to locate a bathroom. After asking three people, someone finally escorted us into the administration area where the only close bathroom happened to be in the clinic. We went in, and he proceeded to spit a fair amount of blood into the sink. After rinsing a few times, we were able to determine that the blood was coming from two different spots on his lips. He had not bitten himself or incurred any other trauma; his lips had just started to bleed. Once we got the bleeding somewhat under control, I cleaned up the sink and we left the bathroom. When we walked out, there was a woman and a man talking to each other in the clinic. I asked, “You wouldn’t happen to be the nurse would you?”

The woman replied, “Yes I am, how I can help you?” The man excused himself, leaving me to drop a few bombs on the unsuspecting nurse.

“Hi, my name is Scott Finestone, and this is my son Zachary who will be attending the high school this year in the ninth grade. Zachary happens to be a cancer patient, and he also happens to have very low platelets right now. We were just in your bathroom spitting out blood. I don’t suppose we could sit for a minute to make sure the bleeding has stopped?”

The nurse replied, “Absolutely no problem, let me get you an ice pack to help stop the bleeding…..and by the way, I’m a cancer survivor too.” She opened up her freezer and gave Zachary one of her homemade ice packs. (A brown paper towel, soaked in water, placed in zip lock baggy, and then frozen. When you take it out of the freezer, it becomes pliable so that you can use it anywhere on the body with ease.)

We got the bleeding to stop, thanked the nurse, and got back in line for his photo. After that, the rest of his day went pretty well.

Wednesday morning when he woke up, he informed us that at midnight he had woken up to the taste of blood again. He said that he went into the bathroom, rinsed his mouth out, and then went back to sleep. One episode was easy enough to write off, but two had me worried. I called his local oncologist and updated her as to what was going on. She and I agreed that since we were already scheduled to have his counts rechecked Thursday morning, that we could wait one more day. I promised that if any problems came up (uncontrolled bleeding) we would get to the hospital right away. Thankfully nothing else happened with bleeding. The other problem that Zachary developed this week was upper leg/groin pain on his right side. He described the pain as being identical to the left side pain he had experienced upon progression of his cancer back in May. He instantly became convinced that the cancer was spreading again. I tried to assure him that his most recent scans had shown nothing on that side and that he had probably pulled a muscle, but he was convinced that the cancer was acting up.

Yesterday while we were getting platelets his doctor examined him and she came to the same conclusion that I did……most likely a pulled muscle. She ordered an ultrasound to make sure there were no clots or other internal issues, and that test came back clear. Unfortunately, by yesterday morning came around, he was in enough pain to be asking for the wheelchair. Walking long distances was really tough on him. We’ve been treating it with regular pain meds, because the anti-inflammatory drugs can eat up platelets, and we don’t have any spare ones to give up.

I hope everyone is enjoying the Olympics, there has definitely been some great stories coming out of the Beijing games this year. In keeping with the Olympic theme that the world is currently transfixed with, I have included in this journal entry an Olympic themed storyline.

With all of his drama, Zachary was clearly a shoe-in for the gold medal this week for medical drama. Between needing platelets twice, having two bleeding episodes for the first time in his cancer career, and then needed the wheel chair, you’ve got to figure that he was heavily favored to take home gold for medical drama of the week. Rebecca has somewhat stabilized, but with her ongoing medical issues, no one with any sense would have bet against her for taking home the silver medal. Lastly, I was clearly the dark horse in this race, with no one giving me a chance to win anything higher than bronze. Well, just like in the Olympics, it is NEVER over until it’s over.

Wednesday I had a pretty uneventful day. Zachary and his friend Brandyn were with me for the entire day, and we didn’t do anything extraordinary. After dinner, Zachary was complaining of leg pain again, so I went into the kitchen to get him some Tylenol. I was standing there opening the bottle when WHAM, I got hit with a gripping pain in the middle of my back. It felt like someone had locked down on my spine with a vice grip. I took it easy the rest of the night, and wrote it off as pulled muscle.

During the night I did NOT sleep well. Every position that I tried seemed to be uncomfortable. Thursday morning Rebecca took Zachary to get his counts checked, to let me rest a little bit more. Once we knew that he would need platelets, I got up and moving and offered to take him to WPB, thinking that sitting there while he got platelets wouldn’t be too stressful on my back. We got through the day OK, and then came home for dinner.

Dinner came and went without any drama, and then it came time to wash the dishes and load the dishwasher. That is always my job. Rebecca cooks and I clean. One would think that standing over a sink and washing dishes could pose no threat to any normal person, but I somehow managed to turn it into a HUGE ordeal.

I was on my last dish, getting ready to wash it, when WHAM….I got hit with an incredible pain that dropped me to the floor and took my breath away. Had I not reached out to grab the edge of the sink, I would have probably cracked my head or broken a wrist while trying to break my fall. The pain was so intense that I lay there for about five minutes, trying to breath between the knife-like pains that were assaulting my back. Rebecca, Zachary and Brandyn all came running when they heard me scream in pain, but they were somewhat leery to try and move me until I could catch my breath. After several minutes, they helped me up and got me into the bathroom where I needed to go. While I was lying on the floor, I really didn’t think that I was going to make it to the bathroom in time. The pain was so intense, I wasn’t breathing, and I couldn’t move. Thankfully I made it in time. When I got out, I sat on the edge of the bed and started to weigh my options. Clearly this was more than just the usual twang of pain that one gets when twisting the wrong way.

Rebecca made arrangements for Brandyn’s mom to pick up the kids, and she and a neighbor helped me out into the car so we could go to the emergency room. The ride there was NOT fun. Every turn the car made would cause shooting pain in my back. When we got to the E.R., I couldn’t get out of the car. A nurse had to help me from the car, into a wheelchair. Once inside, we sat for about an hour before they could even get me into the back. Apparently they were VERY busy.

They ended up giving me two shots in my ass. One for pain and one to relax the muscles. Then they did an x-ray and a thorough examination. The x-ray showed what they call, “lipping” of the vertebrae. I guess as we age, the bones in our spine lose their square shape and start to have curved edges that resemble lips. At first the doctor said they were borderline spurs, but then she showed us where my spine was bent from muscle spasms. She prescribed two drugs, one for the pain and one to relax the muscles, and sent us home. We were there for about three hours. While sitting in the wheelchair, or lying on the bed, I was trying to control my breathing to prevent pain, but every once-in-awhile I would breath wrong or move slightly and get another shooting pain in my back.

We picked up Zachary and got home at around 11pm. I used an icepack since the pharmacy was closed, and somehow made it through the night without falling out of bed or jumping off a cliff to avoid any more pain. Zachary had orientation for high school this morning, so Rebecca took him to that and got my two prescriptions filled for me. I’ve been taking it easy this morning, just trying to rest and not move too much.

SO, I was written off by the experts to only take home bronze, but I came from behind and won the gold for medical drama, easily pulling away from Zachary and Rebecca, leaving them with the silver and bronze!

Some of you may be wondering where this new injury came from. Clearly you must be thinking that I was doing some amazingly manly things that could have caused such an extreme injury. You’re probably thinking that I was doing one of the following:

Weight lifting in preparation for the Mr. Florida contest.
Planting large trees around the yard.
Carrying my kayak on my shoulders.
Playing tackle football with the guys.
Running a marathon.
Climbing a local mountain. (Its flat here…there are no mountains.)

OK, OK….I will come clean as to what the most likely culprit is for my current back problem. But before I do that, I want to make it PERFECTLY clear that ANY and ALL snickering, laughing, teasing, or poking fun at me will NOT go unpunished!!!!

DO I MAKE MYSELF CLEAR?

I hope so….because I didn’t actually hurt my back in the manliest of ways.

Wednesday, before the initial back pain/spasm, Zachary was taking one of his afternoon naps, so Brandyn and I were playing on the Wii. We had a mini-marathon contest where we played twelve of the training area events to see who could win the most. We had done that same competition about a week ago, and I had won. He challenged me to a rematch, so, you know me……”let the games begin!”

We did three events in tennis, baseball, bowling and golf. I of course won again, easily I might add. BUT the stupid machine made it VERY tough on me. I got all of the hard challenges. I know it is only a video game, but somehow that thing caused my injury. And if I can prove it, I’ll OWN Nintendo after suing them!!!

So there you have it. My back still hurts; in fact sitting here typing this entry has exasperated the pain somewhat, so I will wrap things up by saying that I would greatly appreciate it if everyone kept their comments to themselves. I think we should just all come to an agreement that just because I PROBABLY hurt myself playing a kid’s video game, that is NO reason for teasing or making fun of me.

Scott

P.S. On a more serious note, I would like everyone to stop by the CaringBridge page listed below and offer thoughts and prayers to Carson and his family. He has been having a tough go of it lately and I’m sure that with my many legions of fans, we can boost their morale and lift their spirits. Here is his web address:

www.caringbridge.org/visit/carsonruffa

Monday, August 11, 2008 3:37 PM CDT

Another Monday, another bag of platelets.

My guesses coming into this lovely south Florida Monday morning were as follows:

ANC 2,800
HGB 10.8
Platelets 15,000

My thought process on this was that I figured the Neulasta shot would already be working and would have increased his ANC a bit. I also figured that the two units of blood that we got on Thursday would have his hemoglobin up to a respectable number near 11.0. The platelets I figured would still be low, just a hunch.

The actual numbers were as follows:

ANC 700
HGB 10.7
Platelets 10,000

OK…..I was WAY off on the ANC. Apparently it takes longer than four days for the body to respond to the shot, I had forgotten about that from the first round of MIBG way back when. The hemoglobin was within 1 tenth of the number that I had predicted, not bad for a guy who doesn’t know much about anything. The platelets were lower than I had anticipated, but certainly I had foreseen the need for another transfusion today, 15,000 or 10,000…….same net effect.

Drive to WPB.
Get a bag of platelets.

Zachary was a pretty good trooper today. He tried calling several of his friends to see if anyone could join us for the few hours, but everyone was busy. (Not that it’s a joy ride or anything. I do treat him to lunch, and he watches movies while lying there getting the transfusion, but how many kids want to spend the better part of their day at a hospital?) Mondays are “ice cream” day at Palms West. Hey come around with a cart and make sundaes for everyone.

We had a pretty good weekend. Saturday we drove up to Vero Beach to spend the night at my parent’s house. Zachary’s friend Brandyn came with us, so Zachary had someone to play video games with. We had a nice dinner, played a couple of board games, and then watched some of the Olympics. Sunday we swam a little with my parent’s puppy, and then we headed home.

I’ve written about Brandyn before. He is one of Zachary’s closest friends. He has spent a ton of time with us this summer, keeping Zachary occupied with having fun so he doesn’t focus on his health issues. He was the one who was sleeping over the night that our closet fell apart. He had gotten scared from the noise and knocked on our door to ask what the noise was. We’ve given him a really hard time about that night. Our newest Brandyn story came from the trip home. I was driving, with Rebecca next to me, and Zachary and Brandyn in the back seat. I knew Zachary was watching a movie with his headphones on, but I couldn’t see that Brandyn was using ear pieces to listen to his MP3 player. I started to talk to him, not realizing that he couldn’t hear me. I was daydreaming, coming up with another one of my “mental exercises” to keep everyone occupied while we drove home. It takes about an hour to make the trip. This is exactly what I said:

“Here’s a mental exercise for you. What we do if while we were driving home from Vero, a message came over the emergency broadcast system announcing that someone had detonated a nuclear bomb down in Miami, and that the authorities were advising everyone who was north of Miami to leave immediately and head north out of Florida? All of the cell phones would be out, so we wouldn’t be able to contact your parents (Brandyn), so we would have to assume that they would know that we would take you with us and sort it out later, once we were all safely out of Florida.” Well, apparently while listening to his music, Brandyn had looked up and noticed that I was speaking and hit the pause button on his tunes just in time to hear what I was saying……unfortunately he hit the pause button a little bit late, and only heard from the point where I was saying, “A nuclear bomb just detonated in Miami…….” He got a very worried look on his face, and asked, “Why are we still heading south?” He then commented that his dad was in Palm Beach at work (south of where his family lives) and his grandparents were in Hobe Sound (also south of where his family lives.)

I quickly informed him that it was just a mental exercise, NOT REAL. He got a little bit emotional and asked if he could borrow one of our cell phones to call his mommy. When he made the call, she was in the shower, so he told his sister to let her know that he had called, and that he loved her. He then went on to tell his sister that he loved her too. (The same sister that he is always fighting with.) Amazing what disaster type news will do to your perspective on life.

Poor kid…..I guess I scared the crap out of him. We had already had a dinner date set for that night with his entire family at Olive Garden, and needless to say, that story got a TON of mileage with his family. One boy with three sisters…..you just know that he is always dodging bullets.

While I remain hopeful that Zachary’s platelet situation will correct itself, I am anticipating another trip to WPB on Thursday. Either way I will update with news of our goings on this week.

Scott

Friday, August 8, 2008 8:50 AM CDT

I guess since this page is designed to keep folks up to date on medical news, I should probably address our latest medical status first, before sharing other news. (Seems only fair.)

Yesterday we hit the trifecta with Zachary’s blood counts. For those of you who have never been to a horse race, a ‘trifecta’ is when you have to pick the top three finishers of a given race, in the exact order in which they come in. (Not an easy task.) Well, our blood trifecta came in the form of and ANC level of 500 (CONGRATULATIONS – YOU’VE JUST WON A $5,000 SHOT OF NEULASTA IN YOUR LEG!), a platelet level of 15,000, (CONGRATULATIONS – YOU’VE JUST WON A NO EXPENSE PAID TRIP TO WEST PALM BEACH WHERE YOU GET TO LIE IN BED FOR A FEW HOURS WHILE A BAG OF PLATELETS DRIPS INTO YOUR VEINS!), and a hemoglobin level of 8.3, (CONGRATULATIONS – WHILE YOU ARE IN WPB, YOU GET TO RECEIVE TWO BAGS OF BLOOD!)

“These prizes and more can all be yours if you are willing to play – The Cancer Game!”

Zachary and I made it down to Palm Beach at around 11:30am. By the time we got into the infusion room, got an I.V. started, had his counts rechecked, it was 12:00pm. Five hours later we were walking out the door having received our bag of platelets and two bags of blood. Zachary’s color improved greatly once he completed the transfusions, so he was definitely down a few quarts of oil and needed the fluids. The Neulasta shot will take a few days to kick in, so we are trying to avoid anyone who is sick. (Mental illness doesn’t count, so we should be OK here at home.) We’re hoping that the two bags of blood will keep his counts good for more than a few days. We fully expect to need platelets again on Monday. (It’s not that we’re pessimistic, just realistic.)

I am now thoroughly convinced that if teenagers ran the world, we would all be dead within a week. I know that I was once a teenager, but I have NO recollection of being this clueless about reality and logic. NOTHING is ever Zachary’s fault or doing. He could be standing in front of you drinking a glass of milk with no one around him, accidently drop it on the floor, and then look at you and say, “You knew my counts were low, and that I’m tired, you should have prevented this from happening.”

Yesterday we were driving down to Palm Beach for our blood/platelet adventure and Zachary was frantically looking for his ear phones that he uses with his cell phone to listen to music. He was looking in his pockets, in the glove box, on the floor, everywhere. Finally he looks over at me and tells me that I’m just going to have to suffer and listen to his music because he can’t find them. I calmly asked him where they are kept and how he could possibly lose them, and his reply is, “You know I’m tired and can’t remember where I put stuff, it’s not my fault.”

“OK, well whose fault is it? I have repeatedly asked you to put things in one place, and then they will ALWAYS be there when you go looking for them.”

About 18 seconds later he found them, in one of his pants pockets. The SAME pockets that he had already gone through about 3 times. That is teenager logic. “Nothing is ever my fault, I take no responsibility for anything.”

I started emailing out letters to everyone who has asked for an autographed copy of the book. Many of you have responded, so I know the letters are getting there. I am going to include a copy of that letter in this update, so that anyone who has not seen it will know how to get a book from us. The other thing that I need to mention is that there are still a few of you who have asked me to email them with ordering information, but you failed to include your email address when you posted in the guest book. The most recent request was from:

Jessie P. (Bremerton, WA). I do not have your email address.

Here is the letter:

Dear Friend,

Thank you for your interest in my book. The cover price is $19.99, and the shipping & envelope are $2.50. I am selling autographed copies for $22.49. I should have my first order delivered to me by the end of August. Once I receive payment, I will be shipping out your autographed copy. (If you live in Canada, please add an additional $2.00 for the shipping.)

If you have something special that you would like me to add, (name or comment) please include that information with your payment. (Check or U.S. money order please.)

For those of you who use PayPal, I do have an account with them that can receive payments. Simply sign into your PayPal account and then use my email account to forward payment to me. (srfinestone@hotmail.com)

Please make sure that I have your correct mailing address as well.

If you live in the vicinity, you can subtract out the shipping and just meet me to get your signed copy.

Thank You,

Scott Finestone
650 NE Lima Vias
Jensen Beach, FL 34957

I have also had a few requests for Zachary to sign the book along with me. If you are interested in that, just include that with any other special instructions.

I have received many emails and guest book entries asking, “Is it too late to order an autographed copy?”

It will NEVER be too late! I have a few hundred copies of the book on order right now that should be here within 2 weeks. If I start getting low, I will simply order more. Worst case scenario is that there would be a 2 week delay while I waited for more books to arrive. If you do not want your copy autographed, you can go to:

www.xlibris.com/canceronlysucks

That is the direct link to my book at the publisher’s (Xlibris) web page. Once you are there, you can read the description from the back cover, or you can click on my name and it will tell you “about the author”, and you can even read the first chapter online.

Thank you again to everyone who has ordered copies. I am truly looking forward to getting feedback from all of you.

Scott

Tuesday, August 5, 2008 1:11 PM CDT

Zachary’s platelet transfusion went well yesterday. The bag was huge, so hopefully he got a good bump from them. We recheck on Thursday up here to see where we are with that.

Zachary finished his summer book report for high school. We didn’t find out about it until about a week ago. Apparently all of the high school kids are required to read a book and do a report on it before school starts. They are given a few different formats to choose from, which made it nice. Zachary selected the “ABC Book” format. For each letter of the alphabet he had to write a sentence about a character, place, or important event in the book that began with that letter. He also needed to show some art work or images, so he used clip art and every page is dedicated to one letter.

The other exciting news that I have is that my book is finally done! I officially approved the final edit yesterday, so it is now available online for purchase. Everyone who has asked for an autographed copy will be receiving an email from me shortly. I placed my first big order and expect to have books here within 3 weeks. Once they arrive, I will be autographing them and shipping them out to those of you who respond to my email. If you have not requested an autographed copy and would like to get one ordered from the publisher, they have set up a web page for my book:

www.xlibris.com/canceronlysucks

You can also go to: www.xlibris.com
….and search for my book with my name, or the title of the book, which is: Cancer Only Sucks On Days That End In ‘Y’.

They are selling the book for $19.99, which is the same base price that an autographed copy will cost. I went to the post office today and with the envelope, I can ship 1 book anywhere in the continental US for $2.50. So, I guess that means that I will be selling autographed copies for $22.49!

My contact at Xlibris has informed me that they are in the process of registering my book with the largest wholesaler in the country. That company supplies Barnes & Noble, Amazon, and Borders and that within 30 days all three of those booksellers will have “print on demand” access to my book. Xlibris is doing the “print on demand” thing now, so you wouldn’t have to wait the extra 30 days. I do not know how much the major booksellers will be selling it for.

I have had about 85 people email me or sign the guest book saying that they want an autographed copy. As I wrote earlier, I will be emailing you all directly with this same information. Thanks to everyone for supporting this effort and for being patient. I look forward to hearing all of your comments and critiques.

Scott

P.S. If you go to the book’s web page they show the cover, a brief blurb about the book, and you can even read an excerpt from one of the chapters.

Monday, August 4, 2008 12:16 AM CDT

Here it is Monday morning and Zachary and I are back down in WPB getting more platelets. His level this morning was 15,000. His ANC is still about 900, so he did not need the Neulasta shot. I guess we will be getting platelets twice weekly until he starts to make his own again.

The other medical excitement that we had this weekend gave us a little scare. We were at a local riverside park for a birthday party. Thankfully there was a pavilion to protect us from the blistering heat. The kids were all playing in the water fountain. (One of those designed for the kids to have fun in.) Zachary dipped his head under the water once, but didn’t feel like getting soaked. He seemed to be doing pretty well, then after about 2 hours, he had taken a walk out onto the fishing pier and that is where he ran into problems. A few of the kids came back, but Zachary was still out there. I decided to head out and see what he was doing. When I got about half way out, I found him sitting on a bench, alone, wheezing and having trouble breathing. He said that he was short of breath and light headed. I flipped the mental coin and decided that with help, I could get him to the car and race home to get his inhaler. (The inhaler that he hasn’t needed in over 8 months.) The other option was to call 911, but by the time they would get there, assess him, navigate through the whole “cancer” issue, it would have taken longer than to get the inhaler. We got him to the car and the three of us raced home. (About 2 miles.) Rebecca had him squeezing her hand the whole way so that we knew he was still awake. If his status had changed, we have a firehouse (rescue) right around the corner from us, I could have pulled in and gotten help.

We got home, and I ran in and got his inhaler. Within seconds of taking a couple of puffs, he was feeling better. I called his doctor to let her know what had happened, and she recommended giving him a puff every few hours to keep him from having problems. He has been taking a puff every few hours since then, and when he woke up this morning, he was slightly short of breath, so he took some more. His doctor saw him today while we were getting setup for the platelet infusion, and she gave us a script for more inhalers. I guess something has changed for him to cause this new issue. Maybe it is related to the low counts.

Fun, fun, fun.

We recheck counts Thursday morning, and if the platelets are still low, then we will be back down to get another bag.

Scott

Friday, August 1, 2008 9:56 PM CDT

This is like my third or fourth update this week, so if you haven’t been checking in regularly, then you may want to go back and get caught up.

Zachary made it through the night without any issues. I on the other hand woke up at 4am to go to the bathroom, and then, after lying there for about an hour trying to fall back asleep, I started to hear a strange noise from inside the house. Upon further investigation I discovered that the smoke alarm outside of Zachary’s room had decided to let its battery get low…..at 5am. So, every minute the stupid thing would chirp. (Why is it that those things never die during the day, like when you are NOT trying to sleep?) I went out and fought with it until it pissed me off to the point where I just left it disconnected. I bought new batteries today and hopefully it will stay quiet for another six months. I never did fall back asleep, so I woke Zachary at 6:30am; we had some cereal and headed out the door at 7am. We made it down to the hospital in record time, and luckily we were the first ones there. They had the platelets waiting for us, so after the initial recheck of counts (10,000 on platelets, 860 on ANC), we got our Tylenol and Benadryl and platelets and we were out of there by 11:15am.

After a quick bite of lunch, we made our way home.

We recheck counts on Monday, and if he needs platelets again, I guess we’ll be back down to WPB for the day.

Now onto other topics. I usually don’t bring up controversial topics that might cause arguments or heated discussion on this page, and I hope that my foray into this next topic won’t escalate into some HUGE discussion.

For those of you who have been following our page for awhile, you may recall that many moons ago I wrote about my IPod music library. Much to the disappointment of everyone who warships the ground that I walk on, I included the many embarrassing artists whose songs are featured in my library. To refresh your memory, that list includes:

Britney Spears
Kelly Clarkson
Kellie Pickler
Barry Manilow
Josh Groban
Beethoven
Air Supply
Journey
Meatloaf
Queen
Abba
Plain White T’s
Cyndi Lauper
John Denver
The Moody Blues
Pat Benatar
Styx
Warrant

…..to name a few.

Obviously by listing these singers I have once again opened myself up to ridicule about the kind of music that I like. (That is not the point of this discussion.) The point is this. Zachary has been playing his Guitar Hero quite a bit lately. He and his friend Brandyn are constantly battling someone on that thing. Most of the music on there is either classic rock that I have heard a billion times, or it is hard/metal rock that I have no use for. By looking back at my list you may notice that there are bands/singers on there who do have rock ballads. I have always liked the rock ballads. Some of those singers have great voices. Some of the melodies are really good.

Now, back to guitar hero. I noticed a few weeks ago that Zachary and his friend kept coming back to this one song that is supposed to be very difficult to play on the game. I had never heard of the group, or the song, but as I listened to it more and more, it really grew on me. My interest was piqued to the point where I went online and found the lyrics, printed them, and now I have been able to follow along when I hear the song. I have even added it to my IPod. I cannot get this song out of my head.

I am guessing that by now you are at least a little curious as to what song I am writing about. Before I reveal the name, I want you to keep an open mind. I would place this group and song in the metal or harder rock category. Zachary claims they are “classic rock” but I had never heard of them before. (Drum roll please.)

The group is Dragonforce, and the song is “Through the Fire and Flames.”

Now, if you go to Google and enter a search for Dragonforce or the song title, there will be a ton of videos that come up. Many of them are of kids who have recorded themselves playing this song on guitar hero on the expert level. (Not an easy task….you should watch one or two to see how difficult of a song it is.) If you look around, you will find their music video. The original song is a little over 7 minutes long, so don’t play the shorter version.

Once you start listening, your first reaction/thought may be, “how in the world does Scott listen to this and enjoy it?” You need to get past the intro and into the lyrics. It sort of has a rock ballad feel to it in the middle. Having heard the song about 30 times now, I am thoroughly convinced that if the group were to slow it down, a LOT, (like to somewhere between 55 – 65f the current speed,) they could have a VERY commercially successful hit on their hands. As it is now, it is too long for radio and a bit too hard/fast for top 40 type stations. (I have never heard it on the radio. I think it came out in 2006.)

The chorus is great, and the singer’s voice isn’t too bad. Once again, if you are not a fan of rock or electric guitar, you will NOT be able to listen to this without having your ears bleed out on you. The guitar and drumming is extremely fast, but I think the lyrics and melody make it a great song.

If you already know about it, then maybe this isn’t a huge revelation or anything. I just thought that you might find it interesting that I have latched onto something other than the usual soft pop music that I like.

I would love to hear from those of you who actually have never heard of this song, and end up taking the time to listen to it.

Scott

P.S. Don’t forget Barbara’s research project. If you don’t know what I’m writing about, go back to my last journal entry.

Thursday, July 31, 2008 11:25 AM CDT

Well, this is apparently our week for drama.

We fully expected Zachary’s platelets to be low again today, and he didn’t disappoint. His platelet count today was 13,000. We called the hospital in Palm Beach where he gets his transfusions to let them know that we would be heading down, and they informed me that they didn’t have any platelets in stock. They were waiting for some to arrive from the central blood bank in Orlando. So, unless those platelets arrive early this afternoon, we won’t be getting the transfusion until tomorrow morning. The doctor said that as long as we don’t drop Zachary on his head, he should be OK. (A challenge for us, but I think we’ll manage.)

Zachary’s other counts remained in the acceptable range, so he didn’t need a Neulasta shot or blood, so that was good news. His ANC was 1,100, still hovering around that magic number. Zachary remains tired and lethargic (not a surprise), but thankfully he is not having any other problems or symptoms that can accompany low counts. (Kaynahorah, ptuii, ptuii, ptuii.)

We have been working on getting Zachary ready for high school. His doctors have cleared him to try and attend for two classes each day. He will take the remaining classes on hospital homebound. We’re hoping that he will have enough energy to maintain that schedule so that he can be with his classmates. He definitely has some growing up to do…..he is so used to having things his way, and not having to conform. The dress code, rules, and interaction with upper classmen all will prove to be challenging aspects of high school for him to overcome.

On the medical front, I believe that I already mentioned that Zachary will need to return to Philly for the last week of August. He will be doing testing and preparing for his next protocol. The doctor emailed us today to let us know that they are recommending NANT study CEP-701. If you would like to read more about it, you can visit:

www.nant.org

Then click on the NANT Clinical Trials link on the left side of the page, then select #N2001-03 (A phase I study of CEP-701 in patients with refractory neuroblastoma.)

There isn’t a ton of information about the drug, but I can tell you that it is a liquid that is taken twice daily, Monday – Friday. We are waiting on more information about it, (taste, dosage, etc.) Zachary is NOT excited about going back to a liquid chemo. He says that regardless of how it tastes, he has a mental block for any liquid that is a chemo. (Two years of drinking turpentine [Irinotecan] will do that to you.)

Hopefully it is well-tolerated and we can convince him to dive in head first to this new protocol. (Actually, diving with low platelets would be a BAD idea….another poor choice of a metaphor.)

Scott

P.S. Once again I would like to encourage anyone who has been diagnosed with cancer at or above the age of 18 to click on this link. It is a survey that Barbara is doing for her dissertation. I appreciate the help.

https://www.surveymonkey.com/s.aspx?sm=wek8KZoPIykDZc1rbUXStA_3d_3d

Tuesday, July 29, 2008 9:10 AM CDT

Well, I promised to update when we had news, so here goes update #2 this week.

Yesterday morning we had Zachary’s counts checked at the doctor’s office here in town that helps us out so we don’t have to travel down to WPB twice a week. Zachary had gotten platelets on Thursday when his level had dropped to 30,000, so we weren’t expecting platelets to be an issue this week. His ANC was 1,000 on Thursday, so I was fully expecting that he would need a shot of Neulasta. I was wrong on both accounts.

His ANC actually went up to 1,400. I can’t explain this phenomenon. I was told yesterday by the oncologist up here that his ANC may still drop later on. The big story of the day though was the platelets. They dropped to 15,000! (You may recall that normal is approx. 150,000 – 400,000.) I immediately called our WPB doctor and she told us to drive down, and that they had platelets in stock, waiting for him. It was 11:45am when we got there, and the hospital was very busy, so we didn’t get out of there until 4:50pm, and we didn’t get home until after 6pm.

Apparently his platelets are going to be keeping us on our toes for the next week or so. The oncologist up here said that Zachary may have received a “bad” bag of platelets last week, or that he may be building up antibodies to the platelets….neither of which sounds good to me. We will recheck on Thursday up here, and our WPB doctor has already said that she will put some platelets aside for Zachary in case he needs more. (This low platelet thing is DEFINITELY going to put a damper on my beating schedule. Leaving marks on your children can lead to awkward questions.)

All kidding aside, you would never know that his counts were that low. He has no complaints (kaynahorah, ptuii, ptuii, ptuii,) and he still looks great! Hopefully we will be able to get past this latest drama without too much stress.

Today Zachary and I will be working to complete the honey-do list that was left for us yesterday by Rebecca. Obviously we didn’t get much accomplished while lying around the hospital 40 miles away from home.

Scott

P.S. Thanks to everyone who clicked on the link for Barbara's survey. There was some confusion from the front page where it states that you need to live in the four county area to participate, but that is being corrected. The four county area comment is only for those folks who will be asked to volunteer for the in-person interview that Barbara will be doing as a follow-up. So, if you were diagnosed with cancer, and you were at least 18 years old when that happened, it doesn't matter where in the world you live, you can help out and take her survey. My last journal update includes the link, but if you have trouble finding it, email me and I will forward the link to you. Thanks again for the help!

Sunday, July 27, 2008 7:07 PM CDT

I would like to send a special “thank you” out to Benjy for making me feel guilty about not updating sooner.

OK….I’ll admit that I got somewhat lazy this past week and didn’t do an update, but I have some good excuses;

1). The sun was in my eyes. (Did you see how hot it was down here in Florida? The heat index showed it to be over 100 degrees.)

2). The dog ate my journal entry. (OK, technically I don’t own a dog, but my folks DO, and they came down to visit on Friday and brought Maggie. Maggie is a massive, vicious, blood-thirsty wild hound who attacks unprovoked and can ravage a home in seconds.) (Actually she is a 12 pound poodle who is afraid of her own shadow….but it sounded good.)

OK, I don’t have a good excuse for not updating, but you’ll just have to get over it.

On Thursday we went down to Palm Beach to check counts. But, the story about Thursday actually starts on Wednesday, so let me backtrack. We knew that we had to be in Palm Beach for an 8:30am appointment. (The infusion room at the hospital where we check counts just started using set appointment times this week.) The hospital is about 1 hour and 15 minutes away, so I knew that we would need to leave Jensen Beach at around 7:15am. Zachary’s good friend Brandyn had agreed to come with us to Palm Beach to keep Zachary company in case we were there for a few hours getting platelets. Because of the early departure time, we had Brandyn sleep over Wednesday night. He slept on the couch, which happens to be right outside our bedroom, about 10 feet away from our room. After we all fell asleep, Rebecca and I heard a noise from inside our room. I turned on the light and was able to see that a small box had fallen from the shelf in our closet onto the floor. It seemed like an odd event, but not odd enough to make me get out of bed to check for a cause to that fall. Had I gotten out of bed, I may have been able to avoid what happened next. First, we fell back asleep……..which didn’t take long, because we were tired. Then, about 15 or 20 minutes later, we heard an amazingly loud crash that sounded like the roof caving in. I turned the light on again, and got out of bed, only to find that both shelves from MY side of the closet had ripped themselves out of the wall and collapsed onto the floor in a messy heap. Boxes, shirts, pants, hangers, etc all mixed up nicely and dusted with drywall powder from where the plugs had come out of the wall. Within seconds of eyeing the disaster, there was a soft tapping on our door. I opened the door to find Brandyn standing there with a concerned look on this face. Apparently he had also heard the crash and was concerned that a monster or large dog (he knew about the Rottweiler story from before) was coming into the house through the garage and that he was going to be the first victim, since he was sleeping out in the living room. I calmed him down and assured him that the only evil-doer in the house was the person who had installed the shelves 9 years ago and done subpar work. (Me.)

Thursday morning we got up and made it to Palm Beach for Zachary’s check up. His platelets ended up being only 30,000, so we got a transfusion of those and stayed there until about 12pm. Amazingly, his ANC was still strong, 1,000, so we didn’t need the Neulasta shot. We recheck tomorrow morning, so we’ll see where we stand with that at our local doctor’s office. Everything else looked good. Zachary even got cleared to be on the bowling team, which he wants to try out for when school starts in about three weeks.

We heard back from our contact in Philly, and Zachary will need to be back there for a thorough evaluation during the last week in August. They will be doing a bone marrow test, MIBG scan, CAT scans, EKG, etc. By the end of that week they expect to have him approved for and starting on one of three different “maintenance” chemos that we can take at home.

I promise to update this week when I have more news.

Scott

Tuesday, July 22, 2008 2:05 PM CDT

Here it is Tuesday and you would expect that by now I would have some revelations to report regarding Zachary’s blood counts, but alas, no news is good news.

Last Monday, his ANC was 1,300. (Lower than normal, but quite respectable.) His platelets were about 147,000, and everything else looked fine. Thursday, his ANC had only dropped to 1,200, and his platelets were down to 107,000. So, with that information in hand, we entered yesterday’s counts with the expectation that his ANC would be below 1,000, (more likely below 750) and that his platelets would be 65,000 – 75,000 (I actually guessed 68,000 while we were waiting for results.) Well, the ANC came back at 1,300 again! This surprised us, because at this point after the first round of MIBG therapy, he was already needing platelets and getting the Neulasta shot. His platelets actually came in at exactly 68,000, which means that I have been doing this for WAY too long. (I really need to go and take that last medical class, “How to overcharge patients in a tough economy,” so I can complete my degree in medicine.)

So, being the paranoid person who I am, I called our nurse in Philly and asked if this slower drop in counts was normal. She informed me that with his lower disease levels, it may take longer for the ANC to drop, or it may not drop as far this time. The platelets also could drop slower or not as far. We have taken all of that as good news. The phrase “Less disease” in ANY conversation is music to our ears. Thursday we recheck counts down in Palm Beach, and I’m guessing that if his platelets have dropped below 40,000 or so that the doctor will go ahead and give him a bag so we don’t have any issues over the weekend. (I like to schedule his beatings for Saturdays or Sundays, and a low platelet count can result in bruising.)

Only kidding……I don’t beat him on weekends……just during the week.

For those of you who have followed our page for any amount of time, you will recall me having written many times about Barbara, the wonderful woman from the P.O.S.T. team who has been helping us since day #1 of diagnosis. Well, she is doing a dissertation for her PhD on adults with cancer and is recruiting people to take part in a survey. The survey takes about 10 – 20 minutes and is for anyone who was diagnosed with cancer at or after the age of 18. It doesn’t matter how long ago you were diagnosed, as long as you were at least 18 years old when that happened. The survey is open to anyone in the world who would like to participate (I will provide the link), but if you live in Broward, Palm Beach, Martin, or St. Lucie counties here in Florida, Barb is also looking for volunteers to participate in a follow-up interview. She would travel to your location for that interview. The survey is entirely anonymous and is encrypted to ensure that. I know that there are many people out there who have battled or are battling cancer who fit into the criteria that I have provided. If you have some time, I would greatly appreciate it if you could help Barb out with this project. Here is the link:

https://www.surveymonkey.com/s.aspx?sm=wek8KZoPIykDZc1rbUXStA_3d_3d

Or you can go to:

http://abernathy28.blogspot.com/

(Barb created the second link because some folks were getting confused by the long name that the first one has.)

Thank you in advance for helping with this. In the past my readers (lurkers) have always stepped up to the plate and assisted when I have asked. We have a reputation to uphold here folks, don’t let me down!

I am still writing down all of you requests for books. I just approved the most recent 27 edits, so I should have books within 3 -4 weeks. Thank you all for supporting me on that front as well.

Scott

Thursday, July 17, 2008 2:45 PM CDT

Well, much to my surprise, Zachary’s counts this morning were OK. His platelets did drop from 147K down to 107K, but that is still acceptable, and his ANC actually went up a few notches. (This is probably a lab thing, I don’t see how his ANC could have actually gone up, but the number today was very close to the number from Monday, so we’re still OK.)

Zachary’s weight is @ 117lbs. which is fine. He has lost a couple of pounds, but nowhere near as much as last time. Other than that, the doctor feels that he looks good, so hopefully we can get through the weekend without any major hiccups. (Kaynahorah, ptuii, ptuii, ptuii.)

My author’s copy of my book arrived yesterday and it was very exciting to finally get to see what it will look like. Unfortunately, after reading through it, I have found an additional 27 typos that need to be addressed. I already uploaded those to my publisher and they will begin working on them soon. My representative informed me that it may take another month to get a corrected author’s copy. Once I get that, I will be able to order books and begin signing and shipping them. I appreciate everyone’s patience as I navigate the waters of self-publishing. You would think that our initial edits would have caught these errors, but alas, we are not perfect.

I am carefully writing down the email addresses of everyone who has let me know that they are interested in a signed book from me. (As I mentioned a few weeks ago, once I approve the final copy, the book will be available online directly from the publisher and the major online booksellers…..but if you want me to sign a copy for you, I will be purchasing enough to cover those orders.)

Not to tease you any further, but after reading the book again, for the umpteenth time, I was still laughing out loud at some of our exploits from years ago. Hopefully that bodes well for all of you. I figure if I can make myself laugh, then there’s a better than average chance that I will entertain all of you as well.

Tonight Zachary and I will go to practice our bowling for leagues that take place tomorrow. We like to go on Thursday nights because there is an advanced league that has really good players who Zachary likes to watch and learn from.

Have a great weekend, and don’t expect an update unless something interesting happens over the next few days.

Scott

Sunday, July 13, 2008 12:16 AM CDT

I’ve almost gotten used to not sleeping well.

Almost.

It’s amazing what a person can get used to, over time. Just when I thought that I had licked the not sleeping thing, Zachary and I returned to Philly for a week of not sleeping more than 3 hours in any one stretch. For that week, the sacrifice was a known entity. It was a worthwhile blip on the radar of life that you just get past, and put behind you.

So, when we returned home on Monday, I made a mental note that it was time to regain my life, and find rest during the night. (I read once that if you put your mind to it, you can accomplish anything!)

(Must have been a fiction writer.)

After finally finding my niche and getting a couple of good nights with reasonable amounts of sleep, my peace and tranquility were shattered Thursday night. Now, as I relay to you this story of adventure and drama, keep in mind that Rebecca takes a sleeping pill that allows her to sleep through the night uninterrupted. A bomb could go off, and she would sleep through it. So, back to Thursday night (Friday morning). At about 3am, both Rebecca and I woke to loud bang and crash that happened right outside of our window. The initial noise was loud enough to wake both of us up, and then the follow up racket caught our attention. By the sounds of it, a rather large animal was attacking our garbage can, which by fate, sits about 6 feet away from where our heads lay on the pillows.

At this point in my story, I would like to find fault with whichever prehistoric ancestor of man failed to think things through and committed the greatest gaffs of the past 5,000 years. He stepped out of his cave to confront a threat to his family, and protected his woman. That one little act, 5,000 years later, has set up men around the world to be tasked with falling on the sword to save their wives.

In what I thought was a gallant offer, I suggested that we turn on the outside light with the hope that the sudden illumination would scare away whatever monster was lurking in the shadows of our driveway. Rebecca was having NONE of that. Her first comment was, “Put on some clothes and go deal with it.”

Having heard her rather forceful suggestion, my second instinct was to grab the Glock 9mm, along with a few extra magazines, smear black tar all over my body, slither out the back door, and then pump about 30 rounds into whatever it was that was desecrating our trash can. The problem with that plan was that when you start to shoot your gun in a quiet neighborhood, people tend to get a bit antsy and they call the police. THEN you’ve got to go and explain to the authorities why you filled a 1 pound squirrel with 30 bullets. (That is IF it turned out to be a squirrel.)

So, after dismissing the whole commando/gun plan, I went into the garage and found a 3 foot long PVC pipe that I figured could fend off a raccoon or possum or other like-sized critter. I took my weapon of choice, along with a flashlight, and went out the front door. I had already turned the lights on, but that didn’t seem to deter whatever was feasting on our garbage. As I approached the knocked over garbage can, the opening was facing away from me. When I shined the light on the can, I saw the back of an animal that was MUCH larger than a raccoon or possum. At that moment, the 120 lb. Rottweiler that was digging for a snack lifted his head out of the can and glared at me with a look that said, “You’ve got two choices mister. You can let me finish scrounging for the few measly parcels of food that are in your can, or I can take a chunk out of your ass and call it a night.”

(Actually, he saw me and immediately ran into the neighbor’s yard where he laid down and stared at me, waiting for me to vacate his dining area.) (BUT HE COULD HAVE BEEN DANGEROUS!)

I knocked on the bedroom window and had Rebecca open up the garage door. I cleaned up the mess and put the can into the garage so that we could try to get some sleep. About fifteen minutes later the dog came back and knocked over the other garbage can, and quickly realized that it was empty.

On Friday I told one of my neighbors the story and he informed me that one of our neighbors does have a couple of Rottweilers, but that they are very well behaved, and they don’t usually leave his yard. Friday night we didn’t have any problems, so we figured that it was a onetime event.

Then, much to our dismay, last night we woke up at 4am to the wonderful sound of our garbage being attacked yet again. I went out through the garage this time, and the sound of the door opening must have scared the dog away, because I never even got to get a glimpse of him. The problem now is he/she knows that our can is outside and that it has food in it. So, I am contemplating my next move.

I have narrowed down the choices to the following:

Strategically place bear traps around the driveway.
Poison the food in the can to kill the menace.
Buy garbage cans that can be locked.
Strap the cans to the wall so they can’t be knocked over.
Move back to Pennsylvania where we used to keep the cans in the ground.

OK, let’s take these one at a time.

The bear trap idea sounds good on paper, but you and I both know that within a week of setting the traps, I would be writing about my emergency room visit where I had to explain to a doctor how I got a bear trap on my ankle in the suburbs of Jensen Beach, Florida.

The poison idea would probably work too, but I like dogs, and going to jail for killing a neighbors pet would probably NOT help our current situation. Sure, I would get more sleep, but doing that with one eye open all night is not ideal either.

The garbage cans with locks idea sounds reasonable, but the trash collectors come VERY early in the morning. So, on trash days, I would have to sit out there all morning waiting to unlock them so that they could be emptied. This would defeat the “trying to sleep” campaign.

Strapping the cans to the wall might work, but the noise the dog would make while trying to knock them over would definitely wake us up, and drilling holes in my walls for garbage cans doesn’t seem like a good idea.

That leaves us with moving back up north. Once again, on paper it sounds like a good idea. My brother and his family are in Pittsburgh, so that would be great. BUT, there is the whole snow, ice and COLD thing that we would have to deal with. NOT IDEAL!!!

I will just have to go back to the drawing board and come up with some elaborate plan to dissuade the rabid canine from encroaching upon our property anymore.

Medical update:

Zachary is noticing some changes in his energy levels. He is napping more during the day already, and he has said that he can tell his counts are dropping by how he feels. I suspect that we will be getting platelets this week, but time will tell. Yesterday he had some friends over to celebrate his homecoming from Philly. We made tacos and snacks and got to visit with a few friends while he socialized with some of his bowling buddies.

I am carefully writing down all of the requests for my book. I still have a few names of folks who have written that they are interested, but they did NOT provide me with an email address. Here are the names of those people. If you are on this list, please let me know if you are still interested.

Judy (Naples)
Shayne (West Richland)
Darlene (Peterborough)
Lisa Smith (Sparrowbush)

I think that everyone else is on the list. I will be emailing you all with details as soon as I get them in. I am expecting my proof copy this week, so I should have my first run of copies within 2 -3 weeks. (Fingers crossed.)

Scott

Thursday, July 10, 2008 12:26 AM CDT

Medical update:

I recognize that some of my medical updates can get technical and confusing for the non-medically savvy folks out there, so, keeping that in mind, I will type this update very slowly so as not to get too far ahead of you. (I hope this helps.)

Before we left Philly we completed our exit MIBG scan. Now, for those of you who may not remember from the last round, let me explain. The doctors like to take advantage of the enormously high levels of isotope that are floating around inside of the patient after the MIBG treatment by doing a scan before releasing them. In other words, when we normally do an MIBG scan, a small amount of isotope is injected and 24 hours later the scan will pick up on the concentrations of the drug where it has attached itself to the cancer cells. Only larger clusters of disease will show up, because of the relatively small amount of isotope. Because the MIBG therapy uses HUGE quantities of isotope, there is more uptake, or more drug to find smaller clusters that may otherwise not be visible.

So, after the first round (8 weeks ago), they were able to see some spots that had not shown up on regular scans before. Then, a few weeks ago when we did our local scan (with smaller amounts), they were able to see some improvement. BUT, it is always nice to compare results from the same machine, and we were anxious to see how the exit scan would compare to the one from the first round.

The doctor emailed us with the results, and here they are:

“The post-therapy scan done yesterday confirms the response he had after the first treatment. While a lot of the spots are still there, they are MUCH LESS bright, especially the uptake in the spine and in the left groin (and the brightness previously seen in the ribs is gone). I am very happy to see this and this definitely explains why his level after the second infusion was significantly lower.”

The “level after the second infusion” comment is referring to the starting number of 48 that we had during this past round. You may recall that I thought it would be up near the 99 number, like 86 or so, but I did not know that less disease translates into less initial uptake. 48 is less than half of 99, but I don’t know that we can take that to mean that the first round knocked his disease in half. I DO know that I liked the doctor’s comment of “MUCH LESS bright”. (She emphasized the ‘MUCH LESS’, not me.)

When we first selected this treatment, we were told that stability or improvement would allow us to complete a second round. Obviously they feel that we have improvement! We remain hopeful that this second round will also knock the disease back some more, buying us even more time as we battle his cancer.

I am still blown away by the growing number of people who have met Zachary recently and are just in awe of how he looks. We met a nice gentleman on the plane ride home who was sitting with us, and he couldn’t believe that Zachary was fighting cancer. Many of our local friends still ask us, “How long has he been in remission?” I hate to burst bubbles, but we haven’t been able to use the “remission” word since 2001. That was a lifetime ago for us!

Regardless, quality of life remains high. We recognize that the next several weeks will be challenging, with platelet infusions, possible blood or stem cell infusions, shots, and twice weekly blood counts. But, we got through it before, so I am sure that we will get through it again.

In other news, my book is one step closer to being ready. I approved the last of the proofs, so now they are mailing me a single printed copy for me to review inside and out. Once I sign off on that copy, within 24 hours the book will be available online through my publisher. At that time, I will be ordering a bunch of copies for the folks who are interesting in getting a signed one directly from me. I have been trying to keep track of the guest book entries from folks who have expressed an interest in getting a book, but I know that I have missed some. So, I am including in this update, the first name and city (if you posted one) of the folks who have expressed an interest. If you see your name on the list, with a question mark next to it, that means I do NOT know what city you are in. If you see 2 questions marks, that means I do NOT have your email address for notifying you when the books arrive. If you see your name on the list and you are no longer interested in getting one, don’t panic, I will be emailing everyone from the list individually to get shipping information, etc., so you can always decline at that time.

At this point, I am just trying to get a handle on how many books to get on my first order. The more that I get, the more I save on shipping into me. Here is who I have so far: (Remember, if you are not on this list, simply post a message in the guest book with your name and email address, or email me directly to let me know.)

Brenda (Boca Raton)
Rosa (St. Albans)
Judy (Naples)
Sherri (Concord)
Ann (Jacksonville)
Cath ??
Bridget ?
Megan (Roseville)
Heidi (Fridley)
Connie (La Vista)
Shayne (West Richland)
Corrie (Rock River)
Carolyn (Carson City)
Nicki (Watertown)
Bethany (Roughquag)
Karen (Birmingham)
Suzanne (Boynton Beach)
Darlene (Peterborough)
Betty (Vero Beach)
Tammy (Peoria)
Teresa (Scottsdale)
Michele (NY) ??
Erin (Gainesville)
Tina (Alabaster)
Laurie (The Acreage WPB)
Cindy (Free book from contest)

Believe it or not, that is all I have right now. My folks have about 75 books sold to friends of theirs, so I have a pretty good idea of how many I need. You still have until next week to get in on the first run, because I won’t be ordering until mid next week or so. (I plan on reviewing and approving that first copy as soon as I get it.)

Thanks again for the interest and encouragement.

Scott

Tuesday, July 8, 2008 10:06 AM CDT

Home sweet home!

Zachary and I walked through the door of our home at approximately 9:20 pm last night.

Our day yesterday started out innocently enough, with us checking out of the hotel at 8:00 am and walking the two blocks to have breakfast at Cereality. (Zachary’s favorite breakfast place in Philly.) We made it to within 30 yards of the restaurant when Zachary suddenly got hit with a huge wave of nausea. We were standing right in front of one of the fanciest hotels in that part of Philly. He went flying into the lobby in search of a bathroom. Luckily there were two of them within 20 feet of the front door. Unfortunately, they were both locked. (Not occupied, just locked.) Zachary got a much panicked look on his face and started eyeballing the large planters that were scattered around the lower lobby. I was looking for help, but the ACTUAL lobby was located one floor above street level, and there wasn’t an employee anywhere to be found. Zachary puffed up his cheeks (which is never a good sign) and pointed to the planters, I quickly diverted him back out front where he ceremoniously puked all over their sidewalk…… repeatedly….. voluminously. While helping him get through several waves of vomiting, I was able to see at least 3 different security cameras that I KNOW where able to see us. The hotel never sent someone down. People on the street were walking by and looking at us like we were lepers, but the hotel never got involved.

Zachary finished desecrating their sidewalk, and we continued on to the breakfast place, where I knew they had a bathroom. He went in and cleaned himself up while I ordered some oatmeal for me. (Yeah, I hadn’t seen enough of that consistency on the sidewalk; I needed to further torture myself.) He came out and said that he couldn’t eat, which didn’t surprise me. However, after sitting there for a whole five minutes, he went up and ordered two scoops of Crunch Berries. He was able to finish the bowl without incident, so we made our way the three blocks or so over to the hospital for our scan.

The scan only took about 20 minutes, and then we got our suitcase from the hotel and went to the airport, to wait for our 3:55 pm flight. (We arrived at the airport at 11:00 am.) At around 12:00 pm, he got hungry again, so we had a nutritious lunch at Burger King, and then we went back to the waiting game. Thankfully, he had his laptop, so he could watch movies. When we arrived at the airport, he was light-headed and dizzy, so we got a wheel chair. (The same thing happened two months ago when we finished the first round of treatment.)

Philadelphia’s airport is known for its delays, and in keeping with that reputation, we had our little extra drama for the day. About 2 hours before our flight was due to leave, a plane at our gate (of course) experienced some mechanical problems. They emptied the plane of passengers, which filled our gate area beyond capacity, and informed those passengers that another plane would arrive shortly. That entire process ended up pushing back flights from our gate about an hour, so we were late taking off.

Other than the one nausea problem, Zachary did pretty well with the travel. He was able to walk short distances, like from the wheel chair onto the plane, and then off again, but other than that, he stayed in the chair. We checked counts already this morning, and they were fine. Last round it took about 10 days for his counts to drop to a level where we needed to give him a shot of Neulasta.

Hopefully we can get through the next 6 weeks without too much medical drama.

Scott

P.S. I forgot to mention the other day that I went for Chinese food while up in Philly. In keeping with our long run of interesting fortunes from the cookies, I saved mine from that meal.

“You lead a useful life no matter what riches are coming to you.”

OK…..having dealt with our medical drama for over 8 years, we have obviously become accustomed to NOT having money. Having said that, I could have done WITHOUT the fortune informing me that I most likely will NOT have money anytime in the near future! Being told that I live a useful life is fine and dandy, but SHOW ME THE MONEY!

Saturday, July 5, 2008 8:28 PM CDT

I'm typing this journal entry on the hotel computer which does NOT have a word processing program for me to use for spell-checking my work, so forgive me for any errors.

This morning's radiation reading was 6.9, so we were sprung from our hospital room! We actually had to lay around and kill some time to wait for the pharmacy to open, so we didn't leave until about 11am. The hospital security was kind enough to give us a ride over to the hotel.

Zachary has been feeling pretty good today. He has had a few bouts of nausea, but all of those have passed without incident, so hopefully there won't be any issues on that front.

After checking in, we went out for lunch, and then we came back and both of us crashed. When we woke up at around 6:30pm, Zachary said I was snoring loud enough to shake the entire building. He wanted Italian for dinner, so I looked in our handy dandy dinner guide and found a local place that was only about 2 blocks away. When we got there, we checked out the menu in the window and found that entrees were about $25 - $30. We quickly made an executive decision and headed back towards the hotel where we had seen a smaller cafe/restaurant. They had mini pizzas, salads, and a nice sandwich selection. The really cool part of that place was dessert. They had smores! For about $6.89, you get a small wooden tray that has a mini burner in the middle, two wooden skewers, 8 marshmellows and graham crackers & chocolate for 4 smores. So, thats two smores each with two extra marshmellows each. And you get to cook them to your liking right there at the table. We loved it! The place is apparently a franchise (Cosi) but we had never heard of it.

Tomorrow is our down day. We get to catch up on our rest and take it easy.

Scott

Saturday, July 5, 2008 8:28 PM CDT

Thursday, July 3, 2008 7:01 PM CDT

***** PHOTO UPDATE ***** PHOTO UPDATE *****
I have added a new photo to the album (#3) that shows Rebecca skiing, me skiing, and Zachary tubing. Enjoy!

The contest is now over and we have a winner. The winning guess was 15 whole numbers away and still took the victory. Apparently most of you, (and me) were all fooled by the high starting number from the last round. Our starting number yesterday was only 48! So, Cindy from VA is the winner! Noreen from Maine was in second with a guess of 64, she lost by 1.

The funny thing is that when we were getting admitted on Tuesday, Zachary made a prediction that his starting number would be lower than last time, because he has less cancer. His theory was that less cancer would translate into less uptake, and a lower starting number. I dismissed that theory based on my assumption that until his body is able to excrete the excess isotope, the starting number would be based on the dosage amount. I was wrong, he was right. When we saw our doctor yesterday morning right before the infusion, she told Zachary that he was correct; less disease usually does translate into a lower starting number. So, that coupled with the fact that the dose was slightly smaller because of the adjustment for his decreased weight seems to have translated into our drastically lower starting level. This morning, he had already dropped down to a level of 26, so they are fairly confident that we will be released early on Saturday morning.

Being released on Saturday will also depend on whether or not I beat him into a state where he requires further medical treatment! Today he has proven that two year olds don’t hold the monopoly on being immature and childish in their behavior. He just got a call from mom a few minutes ago, and I’m hoping that she talked some sense into him.

Hopefully tonight and tomorrow will go more smoothly. I’m WAY too tired to be dealing with this nonsense.
FOR SALE! One slightly used 14 year old. Potty trained. Reads and writes at an eighth grade level. Can clean around the house and wash the car without removing too much paint. Is good with pets and little kids. Doesn’t bite and only spits on occasion. Will accept cash or pet rock in trade. Must sell!

Scott

P.S. Only kidding about the “For Sale” thing, you can have him at no charge.

P.S.S. Only kidding about the “no charge” thing….I’ll PAY YOU to take him off my hands.

Wednesday, July 2, 2008 4:47 PM CDT

***NEW PHOTO IN ALBUM***

Tonight’s update is brought to you by:

Cigna Healthcare – “Stressing out families and ruining lives, one patient at a time!”

(I’m fairly certain that the preceding quote is NOT their company tagline, however, one never knows.)

Rebecca was kind enough to forward to me the contents of a letter we received yesterday from the wonderful folks at Cigna. Here is the text from that letter:

“Dear Zachary,

The American Cancer Society estimates that one in two men and one in three women will face cancer in their lifetime. Although these are scary statistics, CIGNA HealthCare wants you to know we're here to help.

If you have been diagnosed with cancer you may be eligible for the CIGNA Cancer Support program. This program is designed to help you and your family obtain the mental health care and other services you need. Our goal is to help you and your family access the information, resources and services you need to become active in your own care. This includes helping you understand your diagnosis and treatment and how to avoid some of the side effects and complications of treatment. In addition, we can answer questions you may have about your benefit plan.

As your Cancer Support Specialist, I'll work with you, your doctor and other health care providers to offer support and assistance. I can also help you learn about treatment options identified by your doctor, identify services that may be available to you, provide resources on your condition/treatment, and support your individual choices for health care.

In addition to this program, your plan also offers access to a variety of health information and support. To learn more about the program and about these resources and other tools that are available to you, visit mycigna.com”

(I swear this is the real deal….I am not making this up.)

So, at the bottom of the letter was the name and contact phone number for our “specialist.” I just called the number, you know, to introduce ourselves. I mean, we’ve only been fighting Zachary’s cancer for 8.5 years now, so I guess maybe we NEED a specialist. I got right through to the specialist’s extension and got this message:

“Hi, you have reached (insert name), I am on vacation and will be gone until next week. If you need further assistance, please call back and ask for another specialist.”

(I didn’t call back.)

I have found in the past that my responses to their question about what they can do to help have been mostly ignored. Like the time I asked the rep if she could herd up all of her co-workers and march them up to the roof, and then have them gather in the very center of the roof in a circle, with everyone facing outward. Then, I wanted them to all close their eyes and start running as fast as they could in a straight line. (They didn’t like that one.)

Or the time I gave the rep a special recipe for Kool Aid that she was supposed to share with her office comrades. They didn’t like that one either.
Or my personal favorite was the time I told the rep that I was having a contest to see who could hold their breath the longest. Whoever made it to 20 minutes first would win! They didn’t appreciate that one too much.

(I don’t know why I have to be so cynical when writing about the insurance company, I mean, it’s not like they’ve ever done anything to deserve such treatment.)

Thank you to everyone who has placed a guess in the radiation game. If you have NOT placed a guess and do NOT know what I am talking about, you need to read the last journal update. The contest ends tomorrow night (Thursday) at 8pm. Whoever is closest to the starting number that I now have in my possession will win the free autographed copy of my book.

In keeping with the never-ending drama that surrounds our lives, Zachary’s infusion of the isotope today did not go smoothly. About 20 minutes into the 1.5 hour long infusion, Zachary started to complain of pain in his arm, just above the I.V. site. The nurses and radiation folks examined his arm thoroughly, but could find no issues with the I.V. (An infiltration would have been a bad thing. That is when the needle becomes dislodged from the vein and the medicine runs into the arm, under the skin.) Zachary’s complaints got bad enough for the nurses to contact the doctor. When the doctor heard of his discomfort, she ordered an I.V. team to come up and change his I.V. site to the other arm. When they arrived, Zachary refused to allow them to stick him again. While all of this was going on, the radiation folks were informing us that we had a very short window of time to get the isotope into Zachary, for it to be effective. After about 20 minutes of arguing with him, he finally agreed to allow the I.V. team to stick him, and they gave him an I.V. in his other hand. The pain from that was MUCH worse than the burning he was experiencing from the first site, but he had opened a door that could not be closed. Now he is begging his nurse to re-stick him in the original arm so that he can have the hand I.V. removed. (Drama and fun here in Philly.)

In yesterday’s journal entry I referenced some “interesting news” that we may have. Well here goes nothing. While waiting to be admitted yesterday, one of our nurses mentioned that we might be coming back for a third round of MIBG therapy. We had been told from the beginning that he could only have it twice. So today I asked our doctor what the plan was after this round. She informed me that her expectation is that he would tolerate this round fairly well, based on how well he did on the first round. (Kaynahora, ptuii, ptuii, ptuii.) She feels that within 4-5 weeks we will know whether or not Zachary will need some of his stored stem cells or not. Regardless of how well he tolerates this round, her plan is to have us return in about 8 weeks to get a full workup done in preparation for a “maintenance-type” protocol. There are three that we are looking at. One is a powder form of a drug that Zachary had years ago. It is showing promise and we could do it at home. The second one is also showing promise, but it is a liquid that needs to be taken twice daily, every day. About 10f the kids on that one experience nausea that can be difficult to control. It too can be done at home. The last one is a new drug that is currently slated to be in trials by September. It is also a drug that we could do at home.

As for the possibility of a third round, our doctor told me that they have done a third round on about 10 kids. All of them had tolerated the first two well enough to allow for a third. What they have done is after two rounds, they have tried other therapies, and when the disease in those kids started to progress again, they have gone back to the MIBG therapy. In other words, we wouldn’t be doing that third round for a while, if it all.

The good news overall is that we do have a plan. Our doctor reinforced that she was very pleased with the follow-up scan showing a lot of improvement. His spine (which has always shown a fair amount of disease) was virtually clean, and the other sites were all improved. The interesting test will be on Monday, before we head home. That one will be done on the machines up here, and it will be compared to the one that was done after the last MIBG therapy. The higher levels of isotope show “hidden” areas of illness that don’t otherwise show up on a scan.

That is all that I know for now. Hopefully things will quiet down here so that we can have less drama. My chair/bed has come up in conversation a few times with family members. I promised to take a photo with my phone to show them what it looks like. For those of you who have not had to sleep on one of these, let me paint you a picture. I am typing this entry while sitting on my “bed”. The laptop computer has about 3 inches on each side. In other words, the width of my bed is about 6 inches more than a standard laptop computer. As for the length, I do fit on it on, however, the layout of the room is such that my head is about 12 inches under a counter top, and so every time that Zachary needs something, I risk giving myself a concussion. The other good news is that for some freakish reason, my body has taken up mimicking Zachary’s when it comes to bathroom habits. The nurses have a constant stream of fluids running into him, to flush out the extra radiation, so he is peeing every 3 hours or so. I too, for no apparent reason am peeing every 3 hours or so. The bad news is that I cannot use his bathroom, because of the radiation protocols. I need to travel down the hallway to a different bathroom. (Fun, fun, fun.)

Scott

P.S. The winner(s) will be announced tomorrow night, get your guesses in.

Tuesday, July 1, 2008 6:50 PM CDT

Numbers, numbers, numbers.

You may recall my journal update from about eight weeks ago when we were last in Philly for our first MIBG treatment. I held a contest that focused on Zachary’s starting radiation level from the Geiger counter after his initial injection. I had incorrectly given the parameters of potential levels and the contest had to be cancelled. At the time, I promised to hold another contest. Here we are, getting ready for round two of the MIBG therapy, and I think this would be a perfect time to repeat the contest.

As luck would have it, my book is now in production. I have authorized the exterior and interior galleries, and the company is printing an author’s copy for me to review. I should have that first copy within two to three weeks. Once I have reviewed that copy, I will be ordering books to sign and sell. So, once again, the prize for getting closest to Zachary’s starting radiation level will be a free signed copy of my book!

Now, to make things as fair as possible, I will give you all some background information about his radiation level from our last round. Zachary went into the last round weighing 121lbs. The amount of isotope given is based on weight. After giving him the injection, his initial reading was 99 on the Geiger counter. (40 – 110 is the common range….depending on patient size, absorption, etc.) There are no guarantees that the level won’t exceed 110! For this round, Zachary’s starting dose was based on a weight of 116lbs. (From his last doctor’s visit in Florida). His actual starting weight is 119lbs. (The isotope had to be ordered in advance.) Now, taking all of that into consideration, one would expect a lower than 99 starting level for Zachary tomorrow. We are unsure as to whether the level of disease is a factor in the starting number. I don’t believe that it is. I think the level of disease may affect the second day’s number, only because less disease should translate into less retention of isotope, but the body can only expel this stuff at a given rate. During the last round, Zachary’s starting level of 99 dropped to 37 after the first day. I am not going to incorporate the second day’s level into this contest. You only need to come up with the first number! Not that I know ANYTHING about this stuff, but if you care, my guess is 86. Zachary seems to think that his level will only be 68. (Wishful thinking.)

Once again, you will need to post your guess in the guest book. One guess per person. (If you have four family members, each can make a guess.) If more than one person gets the number right, I will place those winning names into a hat and draw a single winner. (I was going to say that the first correct guess would win, but some of you lurkers don’t check for new journal entries as often as others, and I didn’t want to punish you for that. I will announce the winner in my Thursday night journal entry. At 8pm on Thursday, July 3rd, the contest is over!

Zachary and I are settled into our room. Once again we are in room # 301. The direct phone number is: 267-426-4301. During the last round we had a bad phone line and couldn’t get the phone to ring out loud. I have tested the phone already, and so far it is working. I think that the hospital turns it off after a certain time at night, maybe 9pm.

Zachary and I just got back from dinner. After tonight, he will not be allowed to leave the room, so we went downstairs to the hospital cafeteria and had a nice dinner. I am sure that I will be leaving the hospital to get him “good” food many times this week.

We see our doctor in the morning, so I will wait until after that meeting to give you the other potentially interesting news that we learned today. (What fun is a journal entry if I can’t tease you folks a little bit?)

Scott

P.S. Don’t forget to put your guess in. (You Florida voters, no hanging chads please!)

Monday, June 30, 2008 6:46 AM CDT

Well, well, well, apparently some of you missed my words of wisdom while we were on vacation. You see, the whole idea of a vacation is to take time off from your everyday responsibilities. Seeing as I have been out of work for a few weeks, the only responsibility that I can escape from is updating the world on the adventures of our clan.

Vacation/Family Reunion:

The lake in Tennessee was great this year. No trips to the emergency room. No admissions to the children’s hospital in Knoxville. We actually got to enjoy ourselves and relax.

Zachary did a fair amount of tubing, but for some reason decided against skiing this year. He had a lot of fun with all of his cousins and I think that getting the vacation in before we return to Philly (tomorrow) will help with his state of mind. The closest he came to needing medical attention was when he and his one cousin exited an inflated tube, upside down, at about 35 or 40 mph.

Rebecca learned to water ski this year. After failing to get up last year, I think that she was determined to join the ranks of the skiers. We had her out on my brother’s boat, and she failed on her first two attempts, and then she got up, and pulled in on the rope, and then fell over. For those of you who have skied before, you will surely remember that the #1 rule when trying to get up on water skis is DON’T PULL IN ON THE ROPE! When you pop out of the water, you no longer have that resistance working against you, so the natural tendency is to pull the line. This creates an immediate and fatal amount of slack, and causes you to fall over backwards. The good news with Rebecca was that once she got up that first time, she remembered the feeling and was able to duplicate it without problems. She immediately got up a second time, and went about 20 or 30 feet before pulling in on the line again, and falling over. The third time she went about 50 yards before falling over and calling it a day. On her last fall, the fin of the ski caught her leg and gave her a small cut, but other than that she was very pleased with her success. On the last day there she went back out and skied even further behind my cousin’s boat. She went pretty far, but learned a difficult lesson. If you sit down on the water while traveling at a high rate of speed, you will more than likely give yourself a high speed water enema.

I only skied on one of the days. The water was amazing, and every morning at 8:30 or 9:00am there was a gang of diehard skiers who wanted to have perfectly glassy water to slalom on. I joined them one morning and had a great run. For not having skied since last year, I did pretty well. I made some nice cuts and didn’t fall. My favorite part of the trip was the fishing. I charted the same captain from last year and had a blast fishing for Stripers. (For the record, I have found this species spelled both ways, ‘stripers’ and ‘strippers’, but I just know that I would have taken a ton of flack if I wrote that I was fishing for ‘strippers.’)

On Monday, I took my mom, Rebecca, and my cousin Robert with me and we did really well. Within 30 minutes of getting to the spot, we had four fish on at the same time. By 9:00am we were close to our limit and had more than enough fish for our fish dinner that night, so we headed back. My cousin had so much fun that he booked the captain for another day and insisted that I join him for that outing. We went on Thursday and this time it was Robert, his wife Isabelle, and me. We got to the spot at about 6:00am, and we were nervous, because the report from Wednesday had not been good. The barometric pressure had changed drastically, and the temperature had gone up about 10 degrees, so the fishing had been horrible the day before. Within 10 minutes of arriving, Robert’s wife landed a 15lb. monster. Shortly after that we had three fish on at the same time, and within 50 minutes of arriving we had limited out with 8 fish. We were back at the dock by 7:00am. It took longer for the captain to clean the fish than it took for us to catch them! We had another great fish dinner that night, (I introduced everyone to my beer batter fish.)

Like all vacations, this one went way too quickly. You arrive, you settle in, you start to have fun and relax, and before you know it; it’s time to head home and back to reality.

Zachary and I get one full day home (today) and then tomorrow morning at 7:35am we will be on a plane headed back to Philly for another week of MIBG treatment. This will be the second and last time that we can do the MIBG treatment. We are scheduled to return home on Monday, July 7th in the afternoon. I will have my cell phone up there and a laptop computer, so I should be able to do some updates from the hospital.

As soon as I get copies of the photos from vacation on disk, I will post some on here for everyone to enjoy.

Scott

Tuesday, June 17, 2008 9:19 PM CDT

Our doctor in Philly has been quite busy, so sorry for the delay in getting all of you the report on her impression of our latest scan. We heard late this afternoon, and without further ado……..here is her email to us:

“I have just looked at Zachary’s I-123 scan and am very pleased with the response he has had to the MIBG therapy. The most impressive response was the spine, some spots are gone, and all others look much dimmer/less active. We should definitely move forward with a second treatment and I understand that you have already worked out the dates with our staff. Enjoy your vacation! This is definitely good news!”

So, there you have it, they like what they are seeing from our scan, and we are set to move forward with another round of this treatment. We are on vacation from this Thursday thru Saturday, June 28th. We will be home on Sunday, June 29th, and then two days later, Zachary and I will be flying up to Philly to tackle this treatment again. This time, Rebecca is going to stay home and work, so Zachary and I will have to figure it out on our own. I sleep in the room with him anyway, so I’ll just have to figure out a way to get some sleep during the day, in between pee breaks and medicine interruptions. If nothing else, it should make for some great journal entries.

Because we will be gone over the July 4th holiday, they will need us to stay until Monday, July 7th, so that they can rescan Zachary before we leave Philly. Zachary and I are scheduled to come home late that afternoon.

This news is obviously great! We get to go to our reunion and enjoy that time with our family before jumping back into treatment again.

Zachary’s attitude towards treatment seems mixed again. I believe deep down that he is pleased with the results, but you would never know it by talking with him or listening to him talk with his friends. While we were up in Orlando this past weekend for the bowling tournament, he had told his good friend Brandyn that he needed five friends to encourage him to pursue this treatment again for him to get motivated. Brandyn was easily able to find more than five, but Zachary is still playing the “I’m sick of treatment” card with Rebecca and me.

We have been negotiating with him on what he can get if he goes through with this without giving us too much flack, and I believe that we are close to a deal.

NO, he cannot have a hooker.
NO, he cannot get any tattoos.
NO, he cannot have a switchblade.
NO, he cannot have a sharp sword to practice ninja moves with.
NO, he cannot have multiple piercings in his ears, nose, lips, etc.

YES, he can have earrings (one per ear) if his Philly doctor doesn’t have a problem with them.

That is where we stand with the negotiations; I will update more on that as the process evolves.
Scott

Thursday, June 12, 2008 1:31 PM CDT

Preliminary report results are in.

Our local doctor just called with the results from the MIBG scan. She feels that there is marked improvement. All of the disks and reports are being sent overnight to Philly for their review.

Obviously this is good news. We need stability or improvement to be eligible for a second round of treatment.

We will be waiting anxiously to hear from the doctor in Philly as to what her opinion is of our scans.

Zachary still feels good. His blood counts have stabilized and he now appears to be making platelets without assistance. His ANC has continued to rise nicely too. (Mumble, spit, spit, spit.) His only complaint is a vein in his right forearm that got slightly damaged from the week that he was in treatment. We are told that it may take a few months to heal.

I just spoke with one of the nurses in Philly, and it looks like they are already trying to coordinate the dates for his next treatment. It sounds like they are shooting for early July. That means we’ll be getting back from our family reunion and then we’ll have just a few days off before we need to head back to Philly.

I will keep you all posted as I learn more. I am hoping to have news from Philly by Tuesday or Wednesday of next week regarding what their impressions of this latest scan are.

Scott

Monday, June 9, 2008 8:58 PM CDT

If you missed my last entry about Rebecca and Zachary’s trip to D.C., you may want to go back and read it.

This week marks six weeks since Zachary received his MIBG treatment. We will be testing on Wednesday to see if the isotope was successful in beating down the cancer cells. Meanwhile, we checked blood counts this morning, and we were pleasantly surprised to see Zachary’s ANC and platelets increasing on their own! During the recovery period, he required two Neulasta shots and two bags of platelets….not bad considering he could have needed blood transfusions and stem cell recovery. The other good news today was that since Tuesday of last week, Zachary has gained back 4 lbs from the 10 lbs he has lost since treatment. Rebecca said that she was keeping him very well fed in D.C.

Meanwhile, my brain is slowly turning to mush from the lack of sleep and constant fatigue that I am experiencing. After Zachary had his counts checked this morning, we had a couple of errands to run and then we got home at about 11:30am. He immediately went back to sleep. I got busy on the computer, taking care of some business that I had to attend to. The last thing that I remember was around 3:00pm, looking something up online….Rebecca walked in from work at 4:00pm, only to find me sitting up in my chair with my head slumped over, snoring loudly. (This is not a good thing.)

Feeling badly for once again being the non-productive person in the house, (I did get 4 loads of laundry done today) I aspired to trim the hedges after dinner before it got too dark. I have been trimming our hedges for 8 years, ever since we moved in. I have never had any problems or issues while performing this seemingly simple task. Today, I was about half way through with the job when I realized that I had nicked the electrical cord with the trimming blade. I could see exposed copper wire, so I stopped what I was doing and got some black electrical tape to cover the area, so that I wouldn’t get electrocuted. About 5 minutes later, I was back at work trimming, and in one smooth motion, I completely severed the cord….almost surgically. There was a large flash and WHAM….no more power for my hedge trimmer. (I’m thinking that I need to avoid any machinery, or electrical tools, until I get my head screwed on straight.)

So, my bushes are MOSTLY trimmed now. I will be spending MORE money, to purchase a new electrical cord. I’m an idiot!

Scott

Saturday, June 7, 2008 11:03 AM CDT

Rebecca and Zachary will be home tonight. They land late, after 9pm and then they have the 45 minute drive home. (I am meeting them out near the interstate where our friend is dropping them off.)

News from our nation’s capitol has been mixed.

When they arrived on Wednesday, the plan was for Zachary to attend a soccer game. He was pretty tired, and the rain was pretty heavy, so he didn’t go.

Thursday was the Air Force day, and that was a HUGE success. They had a blast. I am anxiously awaiting photos from that encounter, and when I get some, I will surely put one or two up for you to enjoy. I know that Zachary liked the simulators and from what I hear, they sent him home with a bunch of souvenirs and keepsakes.

Friday was the White House tour and Capitol building tour. And in keeping with our long-running theme of living life in an exciting fashion, there was drama.

Upon entering the White House, young Zachary managed to set off the radiation alarm sensors. (Folks, I couldn’t make this stuff up if I tried. Honestly, I know that I have pulled your chain in the past, but this really happened!)

They were walking through the entrance, and from what Rebecca tells me, you couldn’t even see the detectors. When Zachary walked through, the alarm sounded. The secret service immediately pulled him aside and allowed Rebecca to walk through. She did NOT set off the alarm. The secret service asked if Zachary was a medical patient, and he informed them that he has cancer. Another agent came out with a hand-held detection device that Rebecca said looks like a golf club. They waived it over Zachary and then asked that he and Rebecca follow an agent into a special room. They entered a small room where there was only one chair. The agent had Zachary sit in it, and apparently, the chair had some sort of special radiation sensors built into it. There was a large desk-like apparatus that was displaying information about Zachary’s radiation to the agent. They asked Rebecca the expected questions:

“What hospital is he being treated at?”
“What is his doctor’s name?”
“How long ago was he treated?”
“Did you really expect to walk into the White House with a nuclear device stuffed down your shorts?”

You know….the usual stuff.

While asking questions, the agent spoke into a wrist microphone (just like in the movies) and within five minutes, they were able to tell Rebecca that they had confirmed the type of radiation that young Zachary was emitting and they were comfortable with the fact that it was NOT the “wrong” kind. They even asked if he was taking the SSKI drops to protect his thyroid. (He is.) The agent then escorted them back to their group and helped them through the second security checkpoint where Zachary AGAIN set off the radiation alarm. (Rebecca said that when the second one went off, several agents stood up to stop the group, but the escorting agent quickly informed them that Zachary had been cleared.)

Drama.

Zachary actually enjoyed the episode. He said the tour was pretty boring, except for the alarm excitement.

What amazes me is that he is five weeks out from that treatment, and he still has enough radiation in him to set off sensors.

When we were in Philly, they actually gave us a letter from the hospital that we could use if he set off any sensors, but they said that the airports don’t usually have sensors that are sensitive enough to pick up on it. We never even thought about the Washington trip, especially since it ended up being five weeks after treatment. (Live and learn.)

I keep trying to think back to Friday morning to figure out what I was doing when this all took place. I can just picture some secret service agents tapping keys on a computer and coming up with my name as the husband, and then repositioning some satellite to see what I was up to. With my luck they caught me driving down the road picking my nose or something.

Yesterday afternoon was supposed to be the Capitol Building tour, but Zachary is still getting worn out in the middle of the day, and Rebecca said that he took a 3 or 4 hour nap and missed it. (He also napped at the Air Force base and missed the control tower tour.) Today they are touring the National Observatory (Dick Cheney’s residence) and then the Spy Museum, before catching a late flight home. I’m not sure how much security they use at those two locations, but I imagine that it is possible that Zachary will set off some more alarms today. (With our luck, he’ll be on the terrorist watch list by this afternoon.) If I get a call from them saying that they are on their way to Guantanamo Bay in Cuba, I am going to be VERY upset.

Next week is testing week. It will be six weeks since treatment, so we will be doing the MIBG scan down here in WPB. We are hoping to know something by Thursday or Friday.

Scott

Tuesday, June 3, 2008 1:40 PM CDT

Yesterday we checked Zachary’s blood counts and his ANC was up to almost 8,000. (That’s the Neulasta doing its job.) His platelets were 63,000. (That number was a little more suspect.) Let me explain.

Zachary received platelets on Thursday of last week when his were 27,000. There is no exact rule of thumb as to how high of a boost you will get from a single bag of platelets, but from our experience, a bump of 30,000 would not be unexpected. Now, for you medically inept folks, platelets do not last forever. Under normal circumstances, I am told that they last for between 3 and 5 days. So, after receiving a bag on Thursday, you would expect that his counts could have jumped up to about 60,000 or so. But then you have to factor in that those new platelets will start to die off. With a count of 63,000 yesterday, it was hard to determine whether he had received a slightly higher boost and was losing them again, or whether his body was once again setting up shop as a platelet factory. Normally all of this would have been of secondary importance to staying on top of his counts twice weekly, but Rebecca and Zachary are scheduled to fly to Washington D.C. tomorrow with Collette and Kade for 4 days, so we won’t be able to recheck his counts again this week. The last thing we wanted was for him to be in D.C. and to have an issue with his blood counts.

So, the decision was made to recheck his counts today. If the platelet level was higher, then he is probably making them again and on the rebound. If they were lower, then we would have given him another bag to get him through the weekend. Thankfully, his counts today showed platelets over 70,000! His ANC had dropped slightly, but we knew that it was artificially elevated by the Neulasta anyway. The only levels of his that the doctor has issues with are his hydration and nourishment. He needs to be drinking more, and he has lost another couple of pounds, so he needs to be drinking a Boost when he misses a meal. He was 122lbs. when he entered the Philly treatment, and he has slowly been losing weight every since. He is now down to 112lbs. He still looks good, but we obviously don’t want him losing a ton of weight.

Rebecca and Zachary are very excited about their Washington trip. Their schedule is packed enough to make even a political candidate’s head swim. They have a soccer game to attend, an entire day on the air force base for the Pilot-for-a-Day program, then tours of the Capitol building, National Observatory (Dick Cheney’s residence), the national mint, and The White House. Needless to say they will be sleeping well at night!

Zachary’s dance didn’t go nearly as well as he would have liked. It started off really well, with him giving his date a beautiful corsage that he placed on her wrist. Rebecca was even able to get a few nice photos of them together. But, when I picked him up afterward, he said that he did NOT have a good time. His date ended up dancing with other boys and gave him back the corsage, and he spent most of the night watching the other children dance and enjoy themselves. He wouldn’t tell me much about what happened, but he hinted that he was picked on by some of the kids. (Keep in mind that many of the kids there had not seen him in quite some time. He has been getting his schooling through the hospital home bound program.) I asked him why he didn’t tell one of the teachers or administrators who were there about the bullying, and his response was that he didn’t want to be singled out as having gotten other kids into trouble. We’ve spoken with him before about getting adults involved when kids are inappropriate, so I was confused by his inaction……that is until last night. Without giving up our confidential source, I will reveal that we were given a copy of the text from a chat that Zachary had with a friend last night. During that chat, he revealed to his friend that he had asked a girl to dance (after his date ditched him) and she made a comment like, “Get away from me cancer kid.” (Nice, huh?)

I’m guessing that the “being picked on” thing was this girl’s crappy comment, and that he didn’t want to make a scene.

Either way, it sucks. He was looking forward to that dance for quite some time, and afterward all he would say is that he never should have gone in the first place.

The girl who was supposed to have been his date for the night contacted him (through friends) over the last couple of days, and she apologized for her behavior, saying that when she gets with large groups of kids, she acts differently and should not have ditched him.

I know he is only 14 years old and that with girls and boys who are 13 and 14, there is going to be HUGE amounts of drama, especially at a formal dance like that where they are getting to feel like they’ve attended a prom or something. My problem is that I really wanted him to have one of those magical nights that just fills your head with good thoughts and makes you smile every time you think about it.

With all of the uncertainty in our lives, the junior and senior proms look like they’re a billion years away from happening.

Lesson #1: Keep your kids healthy enough to enjoy life so they can experience its ups and downs.

Lesson #2: Be grateful for each and every day that you get with your children.

Lesson #3: Don’t focus on the negative, keep your eye on the bigger picture which is overall quality of life.

(These lessons are for me….not you guys…..I just needed to remind myself of what is really important.)

My sleep drama has not gotten any better yet. I started to get sick late last week and have been unable to use the CPAP machine because of my congestion. So, when I am able to restart on it, I will be back at square one. (Every time that I see the word “CPAP” in an email or guest book post I immediately think that someone has written “CRAP” and catch myself doing a double take.)

I have never been this tired at any point in my life. I remember doing all-nighters in college, and not being this tired. I remember working the midnight shift when I was in retail. I would have to cover two days/week on the midnight shift, and then I would have to switch back to days during the same week. I was never this tired. Something has GOT to give soon.

Scott

Friday, May 30, 2008 8:46 AM CDT

I was going to update early yesterday morning when I woke up at 6:00am, unable to sleep, but then I realized that Thursday is “blood count checking” day, and that everyone would want to know what happened on that front. So, here we are on Friday morning, and you will get your week-ending update.

Medical News:

Zachary’s ANC has begun its climb north from the Neulasta shot that he received on Tuesday, so he should be in good shape for the next week or so with that. (Mumble, spit, spit, spit.) His platelets however took a plunge and were down to 27,000. The hospital had them in stock, so Rebecca and Zachary were able to get out of there by 12:00pm after receiving his Tylenol, Benadryl and platelets. Other than that, his checkup went fine.

Rebecca has been doing pretty well with her sinuses. She hasn’t been complaining too much about discomfort or issues, so hopefully she will not have any problems next week when she and Zachary fly up north.

I, on the other hand have very inconveniently come down with some sort of bug. It started with a sore throat and has escalated into congestion and a cough. On top of not sleeping well from stress and whatever else I have going on, I now have the distinct pleasure of waking up throughout the night in coughing fits and discomfort. (Men can be such babies when they are under the weather.) Suffice it to say, I am NOT a happy camper. My voice is threatening to leave me again, and I am so sleep deprived that I am considering signing up for the Walt Disney cryogenically induced sleep program. I recognize that they usually don’t freeze folks until AFTER they have died, but maybe they will make an exception in my case and freeze me for about 10 or 20 years, so that I can catch up on my sleep.

Tonight is our local American Cancer Society Relay for Life, an event that we look forward to every year. I am hoping that I feel well enough to attend, so that I can watch Zachary walk the survivor’s lap. We attend that event every year, and every time that I see him take that lap I get choked up, thinking about how lucky we are to have made it through another year with such a high quality of life for Zachary. With all of my belly-aching and complaining, I DO truly appreciate the blessings that we have been given.

Tomorrow night is the eighth grade class dance, and Zachary is signed up to go. Supposedly, he has asked a girl to be his date for the dance, so that ought to be interesting. Rumor has it that she is also going to attend the Relay for Life with us tonight, so we may actually get to meet her.

Zachary was hanging out with her and one of her friends the other night, and he got bitten by several mosquitoes. I have written about his sensitivity to insect bites in the past, but in case you were sleeping during those journal entries, he tends to get large welts when bitten. The parent of the second girl is a nurse, and she immediately put some topical Benadryl on the bites and got him home to us so that we could give him an oral dose as well. The size of the welts was amazing. Ever since his bone marrow transplant, he has been hyper-sensitive to those bites. It never ceases to amaze me how virtually every life-saving treatment or medicine has a “dark side” to it that leaves you dealing with issues for years to come. Within an hour of taking the oral Benadryl, the welts started to subside, and he slept fine that night. The doctor examined him yesterday and she was not concerned with the issue. We keep a topical applicator and oral Benadryl with us when we travel, so that we are prepared. We have learned the hard way that having to drive 15 – 30 minutes in search of drugs can be somewhat stressful. (Arkansas family vacation – three years ago.)

We recheck counts on Monday, so I will probably update after that.

Scott

Sunday, May 25, 2008 11:00 AM CDT

Well, Zachary got his platelets and we made it home by dinner time on Thursday. The Benadryl that they pretreated him with made him very tired, so he slept most of the way home. Zachary’s ANC is once again on the down slope, so we are watching him this weekend for fevers or other medical anomalies.

Rebecca had her follow-up appointment with the ENT doctor who performed her surgery. During that examination, he noticed that she is developing scar tissue that is threatening to block her sinuses again. The surgeon attempted to clear some of the debris during his examination, but apparently the procedure was uncomfortable enough that Rebecca was threatening him with bodily harm if he didn’t stop what he was doing. In the interest of self-preservation, he doctor scheduled Rebecca for a future visit that will include injected anesthesia in the nasal area so that he can nip and tuck without throwing her into agony.

On Friday, I went to the respiratory supply company where I was able to pick up my C-PAP machine to begin addressing my sleep issues. While walking me through the functions and usage of the device, the therapist informed me that it can take a few days to get used to wearing a mask while sleeping, and that I should try to get at least 4 hours of use the first night, and then build up from there.

When I was a young child, growing up in Pittsburgh, I remember that there was never a shortage of urban legends/myths that were being passed down from the older kids to the younger ones. The intent of these legends was to instill fear and panic into our young minds. Some of the classics ones that I recall were:

1). At camp, we always heard about the escaped deranged killer who had a metal hook where he had lost a hand. Supposedly he would roam the woods, looking for potential victims of his next slaughter. Whichever older kid would be telling us the story would say that he had been on a date and had taken a girl for a ride in the woods, where he had parked so they could make out. While parked, they had heard a noise and the girl got scared and asked to be taken home. The boy drove her home, and when he walked around the car to open her door for her, there was a bloody, metal hook hanging on the door handle. (This one was great, because we would be at camp, IN THE WOODS, and not one of us would get ANY sleep, thinking about this lunatic out there with his hook.)

2). In college there was the story about the girl who goes on a date and gets home very late to the dorms. She doesn’t want to disturb her roommate, so she gets into bed without turning on the light. When she wakes up in the morning, she finds her roommate slashed to death, with a message written in her blood on the wall that reads, “If you had turned on the light, you would be dead too!” (This one came out after the Ted Bundy killings and I PROMISE you that EVERYONE was turning their lights on regardless of how late they got back to the dorms.)

3). When I was very young, there was a story making the rounds that actually ended up being used in a movie. Supposedly, if you owned a cat, you had to be careful, because during the night, while you were sleeping, cats supposedly liked to stealthy crawl up onto your chest, and “steal” your breath as you would sleep. (We never owned a cat, but I fell asleep more than once thinking about that one.)

So, why all of the talk about urban legends/myths? Well, as I mentioned earlier in this update, I got my C-PAP machine on Friday and started using it. Friday night I actually made it through 4 hours. I woke up several times, and finally at 3am I had to go to the bathroom. The tech who had “trained” me on the device had shown me where there was a quick release section that would allow the user to disconnect the tubing quickly, so that you could go to the bathroom. At 3am, tired beyond belief from not sleeping that night or any other in recent days, I found the “quick release” section to be anything BUT “quick” or “releasing.” I don’t want over-dramatize the situation or anything, but I was panicking from not being able to breathe while I was trying to get to the toilet to do my thing. (I’m guessing that I came close to either passing out or wetting the bed…..or both.)

Last night was better than Friday night, only because I took the C-PAP device off of my head after 30 minutes of use. You remember my little story about the cat stealing your breath as you sleep….well, I felt like I had an 850lb. tiger on my chest with my head buried deep within its mouth, as it was sucking my lungs inside out! This thing is supposed to make it easier to breathe, NOT HARDER! I couldn’t catch my breath with it. I’m sure that it was on, because I could feel the air escaping through the valve that sits near the mouthpiece. But the bottom line is that I was NOT getting enough oxygen when taking breaths. All I could think about last night in the seconds leading up to me ripping the thing off of my head was that I REFUSED to be the 1st person on the planet who suffocated using a device designed to HELP your breathing. There is NO way that I am going to die that way, only to end up as featured story in the Darwin Awards. (A collection of stories about people who have died in really stupid ways……there is one about two guys that go to the archery range…..and one of them misses the target and loses his expensive arrow. He then talks his friend into standing out past the target so that he can shoot another one on a similar trajectory, so they can locate the first one. He ends up shooting his friend through the head and killing him.) You can see where me suffocating while using a C-PAP machine would be a BAD thing, and not just for the obvious reasons!

So, I don’t know where that leaves me. I will be reading the booklet today to make sure I didn’t make some grievously stupid mistake when hooking this thing up, but there aren’t a whole lot of parts, so I’m guessing that the problems is with me.

After only a couple of hours of sleep last night, I was up by 6am and had a decision to make. I had thought about going kayak fishing this weekend, but I have been anything BUT motivated to take on physical activity. I walked out to look at the weather and grabbed the newspaper, then I returned to bed and decided to try and sleep some more. That lasted about 2 minutes, and then I threw caution to the wind and got up, loaded up the pickup truck, and went fishing. It’s been awhile since I have taken the kayak out, so I ran into a few bumps in the road, but I did make it out into the river, and I did catch some fish. I enjoyed fighting the few fish I caught, but overall I was having a difficult time “staying in the moment.” I don’t know if it is the lack of sleep, or just my current state of mind, but I’ve GOT to get out of this funk!

It’s nice having the three day weekend, maybe I’ll get some sleep tonight.

Scott

Thursday, May 22, 2008 10:38 AM CDT

I am writing this journal update from the infusion room at our WPB oncologist’s hospital. Zachary’s platelets this morning were only 34,000. His ANC has also dropped (1,185) but his other numbers were pretty good. We are waiting on platelets, so we will be here for most of the day. Zachary’s sugar level was also a little bit low, but we addressed that issue with a can of soda and a bowl of Cocoa Krispies cereal. Zachary has his laptop (actually I am using it to write this update) and they brought him a PS2 game system attached to an amazing TV set. So, he will not be bored today. He also has two of the Conner Moran Children’s Cancer Foundation folks here to entertain him and hang out.

Overall, I would say that he feels pretty good. He is somewhat tired, but that is probably due to staying up late and watching TV. With his ANC dropping again, we don’t know if he will need (or be eligible for) another shot of Neulasta next week. By Tuesday, his ANC will more than likely be low again.

I received a guest book entry asking me to explain the whole “Mumble, spit, spit, spit” thing, so for those of you who have not followed the page for too long, here is your quick lesson on that ritual.

There is a Yiddish expression “Kaynahora” that is used as a sort of superstitious fighting device. (Similar to “knock on wood”.) Along with the word “Kaynahora, you are supposed to spit three times. I don’t know what the spitting accomplishes, other than grossing out everyone within a 20 foot radius of you when you do it, but who am I to question thousands of years of tradition? So there you have it, to shorten the process I have reduced “Kaynahora, ptuii, ptuii, ptuii” to “mumble, spit, spit, spit.

When I wrote about my sleep study the other day, I neglected to mention that in addition to my snoring and lapses in breathing, they were also monitoring my leg movements. Rebecca has said for years that I run in my sleep, and apparently there is an illness known as Restless Leg syndrome or RLS. They had electronic leads attached to my legs, and I did end up having quite a bit of leg movement. There are drugs that can prevent this from happening, but here is my thinking on this…..

The only exercise that I get right now is the running in my sleep, if I let them take that away from me, I’ll get completely out of shape! I may even try to develop a medicine that CAUSES RLS. I could then market it as the wonder drug of the 21st century. I’ll come up with some catchy name and then market it as the drug that allows you to lose weight and exercise while sleeping. It could be worth billions! (I’m always thinking!)

Actually, between my running all night long while I’m asleep, the getting up to go to the bathroom, and the not being able to sleep well from the stresses of life, I’m about 10 seconds away from joining Rebecca on Team Ambien. I figure that if I start taking sleeping pills, eat more healthy foods and also pick up a new hobby, like drinking, then maybe I would be able to get some rest. That was a joke, please don’t panic or try to have me committed, I am NOT going to start eating healthy foods!

I commented to Rebecca yesterday that I have never in my life felt more tired and rundown before. I also have noticed that I am more distracted (mentally) by our drama than I have ever been before.

In two more weeks we get our scan, so maybe that will changes things for us. (Mumble, spit, spit, spit)

Scott

Monday, May 19, 2008 7:28 PM CDT

Medical update:

Zachary’s counts on Friday were pretty good. His ANC was 6,500 (a result of the Neulasta shot I’m sure,) his HGB was 12.2 and his platelets were a respectable 83,000. He did start showing signs of a cold or congestion, blowing wonderfully green boogies and coughing occasionally, but that didn’t stop him from having a fun weekend with his friend Brandyn. Today, his ANC had dropped to 3,100, (still respectable) his HGB was back up to 12.7, but his platelets dropped to 55,000, so he is on a pace to need a platelet transfusion on Thursday. That is the day we are scheduled to recheck counts, so I guess we’ll see in three days where we are. He has not had a fever with his congestion, and his lungs sound clear to the doctor, so hopefully this is just some odd bug that will run its course and leave us alone. (Mumble, spit, spit, spit.) His weight today was 113lbs, so he has lost a few more pounds.

I completed my sleep study Friday night, and today I got my results. They say that I slept 4 hours during the 6 ½ hour study. My longest time without breathing was about 28 seconds, and I was having apnea-like episodes about 32 times per hour. SO, I will be trying a C-PAP machine here shortly. I’m guessing that I need it, because I almost never feel rested when I wake up anymore. I used to POP out of bed and be off and running, but now I am just lethargic.

We had a nice visit with my folks Saturday night and most of Sunday. We stayed over and had a good time. Internet friends of ours Chemo Laura and her husband Cody were kind enough to drive down from Orlando for the day on Sunday, so we got to visit with them for most of the afternoon. We even took them over to the beach to see how beautiful our water is down here. They had visited Daytona Beach earlier in the day, but the water up there is brownish gray, and just doesn’t “feel” like Florida. We walked the beach so that Laura could collect about 591,322 sea shells, while Zachary and Brandyn were jumping in and out of the ocean.

Congratulations to the Pittsburgh Penguins for winning the Eastern Conference Championship yesterday. They defeated the Philadelphia Flyers 6 – 0 in game 5 to win the series 4 -1. Now they await the winner of the Detroit Red Wings – Dallas Stars series. Detroit is winning that series 3 -2 with game 6 tonight in Dallas.

We are now scheduled to have Zachary’s follow-up MIBG scan the week of 6/9, so in three weeks we should know more or less where we stand with how the Philly treatment went. I’m sure that my sleep issues have NOTHING to do with the uncertainty in our lives right now. I can’t imagine how ANY of our medical issues could POSSIBLY affect my state of mind. (Rolling eyes wildly.)

Rebecca is feeling pretty good. She was a little bit fatigued over the weekend, but once again, there may be just a teensy weensy amount of stress floating around in her head as well.

I guess I’ll try to update later this week once we know what is going on with his blood counts.

Scott

Thursday, May 15, 2008 7:46 PM CDT

This is one of those “off” days where I really don’t have anything earth-shattering to write about, but I guess that is a good thing. (Mumble, spit, spit, spit.)

On Monday, Zachary’s ANC had dropped to 900, so the doctor ordered up the Neulasta shot and Zachary got introduced to that wonderful drug. It burns while being administered, but other than that, it was a non-event. We recheck counts tomorrow so we’ll see where we stand. I’m not sure how long it takes to kick in. He started coughing today and blowing green boogies, so I’m guessing that his counts may still be dropping.

Other than the congestion, he has no complaints. (Mumble again, spit, spit, spit…again.)

Zachary has been working harder at getting caught up with his school work. He worked with his hospital homebound teacher again today, and he also submitted two assignments for his online class, so he is on schedule to “graduate” within a few weeks. His goal is to attend the high school next year with his friends. My goal is to make HIS goal happen!

Rebecca has been doing pretty well with her sinuses. She is still battling some mild congestion, but she will be seeing her doctor again next week, so hopefully by then things will have cleared up.

Not wanting to be left out of the whole medical issue thing, I am going to spend tomorrow night in the local sleep lab. This all started a couple of months ago. I was up visiting my father and I noticed that while he was napping, he would stop breathing. I timed a few of the episodes and was shocked to discover that he would not take a breath for 15 seconds or so, several times in a row. I encouraged him to get a sleep study done, because I suspected sleep apnea was the culprit. During his study, they found he was having like 50 more apnea episodes than is “normal” in a set time period. They also found that he would stop breathing for over a minute sometimes. (I’m no doctor, but I’m guessing that as humans, we need to breath more than just once in awhile.)

So, after Rebecca’s surgery, she was on pain meds and couldn’t take her sleeping pill. Because of that, she was up during the night more than usual. During that week or so, she witnessed several instances where I would stop breathing, or start choking. (Once again, we’re not doctors; but we HAVE slept in Holiday Inns before.) Since then, I have had a couple of nights where I woke up choking and gagging, for no apparent reason.

So, being the responsible medically savvy person who I am, I contacted our friend that runs the local sleep lab and asked for advice. She recommending calling my doctor and getting a script called in for a sleep study. All of that took place, and tomorrow night I get to be the guinea pig with the wires all attached to various parts of my body.

I apologize in advance to any other patients who will be trying to have studies performed tomorrow night. I can promise you that my snoring will NOT be contained by mere walls and doors. Such is life; you rolled the dice and picked the WRONG night to get evaluated.

My book is in production right now. I have selected the style, and colors and such. I have also uploaded the photos for the front and back covers. I should be getting a proof within a few weeks. I will keep you all posted on that.

Scott

Saturday, May 10, 2008 3:25 PM CDT

I was up this morning at 5:30am putting the final touches on the book. It looks like I will be taking the self-publishing route. I placed the order today with a reputable firm, and I should be hearing from a consultant next week. My manuscript has been tweaked for the billionth time, and I believe that it is ready to be sent over to them so that they can set up a proof for me to approve. There are some templates that I can choose from for the cover and the interior layout, and then I will have a book. It sounds like they may be able to start printing within 4 – 6 weeks, but I am not making any promises.

The book will be a 6” X 9” perfect bound paperback book. It will be available through all of the major online book sellers (Barnes & Noble, Amazon, Borders, etc., and I will have copies here for anyone who would like to get one autographed. (You never know…..that signature could be worth something some day.) I will keep you all posted on the book as things happen, but mainly I wanted to let you know that it is done, and ready to be printed!

Medial update:

We had Zachary’s counts checked on Friday, and he has definitely started the decent towards low counts. His ANC was 1,300, which is less than half of what it has been running. His platelets held their ground nicely and actually went up slightly from earlier in the week. (Mon. - 156,000, Fri. – 186,000.) I spoke with one of our nurses from up north and she is of the opinion that we should be able to avoid needing platelets (someone spit a few times and mumble in Yiddish for me…I’m just too tired,) and she also thought that it was unlikely we would need stem cells. (Once again, spit, spit, spit, mumble.)

As for needing blood, she felt there was a good chance of that, but getting blood shouldn’t be a huge deal. (Spit, mumble, etc.)

For those of you taking an active role in the cancer game, you are probably familiar with Neupogen, the injected medicine that is used to raise the white blood count. We used it years ago when we were doing the harsh chemo thing. Now, they have come out with Neulasta, a new version of that drug that only has to be given once, and it lasts for about two weeks. (The Neupogen had to be given every day for several days to achieve good results.)

When we were in Philly, they had told us that Zachary could (and should) get the Neulasta when the time came, because it is easier on the patient, only getting the one injection versus several. Our local oncologist had also recommended this drug, and even went to the trouble of calling it in to our pharmacy for us so that it would be there when we needed it. The other local oncologist, that is checking counts for us, gave us some eye-opening news on Friday regarding Neulasta. There was some discussion as to whether Zachary’s counts were low enough to warrant starting the drug, and apparently they stock it at the doctor’s office. I mentioned that our other doctor had called it in to the pharmacy, and the nurse looked at me like I was clinically insane. She said, “Do you have any idea how much that drug is going to cost you?” Of course, I did not. No one had mentioned anything about the price, I just figured since it was a single dose, it HAD to be cheaper than the Neupogen was years ago. WRONG. I called the pharmacy and the tech said, this; “We received the order from your doctor and tried to call you late last night. We don’t stock that drug, it’s a special order, and you have to prepay the $3,600.00 that is costs.”

After the nurses were able to awaken me with the smelling salts, I took a few moments and tried to compose myself. Zachary’s medical insurance does NOT have a pharmacy plan. So, we have to pay upfront for his meds and then submit the bills, and hope to get a small percentage back, after waiting months, and months. Unfortunately it was a Friday when this was taking place, and I had left my other wallet at home, you know, the one that I keep $4,000.00 in just in case I need to buy some stupidly expensive medicine. Not wanting to spend $4.00/gallon to drive back home, I asked if there was another option. The nurse informed me that if they used THEIR Neulasta, it would get billed through Zachary’s insurance (which we had already met our out-of-pocket maximum on for the year), and then we wouldn’t have to front any money.

(Don’t pressure me, I don’t like pop quizzes. I never do well on pop quizzes.)

OK….so my choices are:

A). Rob a bank in an attempt to come up with the $3,600.00 that I would need to buy the medicine from our pharmacy. Risk going to jail, or worse getting shot for attempted robbery. Risk bankruptcy and certain ruin.

B). Let the doctor’s office bill my insurance company.

(No hints please, I can get this…..I CAN GET THIS ONE.)

OK…..I’ll choose…………….B?

YEAH!!!!!!! I chose wisely for once.

(Spit, spit, spit….mumble.)

Meanwhile, I have discovered an anomaly that I cannot explain. I was born in February of 1963. That makes me 45 years old. I can do the math, every year in February, I add one year to my previous age, and then I know how old I am for the next 12 months, and the cycle goes on like that. So, if time has been moving forward at a constant rate, seconds, minutes, hours, days, months, years, all advancing the same way they have for centuries. Then why does it seem as though I have aged considerably more than 1 year over the past 12 months? I feel like I am 65 years old.

Something is wearing me down. Something is draining me. Something is sucking the very life out of me. Hmmmm. I wonder what it can be.

Oh well, life goes on.

While reading the guest book entries today, I noticed that a few of you commented that you “didn’t realize Zachary had been adopted.” Let me clear that up for you.

Rebecca is Zachary’s biological mother. She had Zachary when she was 17 years old. I met them when she was 18, and Zachary was about 9 months old. We started dating shortly after that. (I like those middle-age girls, 18 – 25.) (Oh boy, I’m going to take some crap for that comment.) So Zachary has only known me as a father. About three months after we got married, (Zachary was 4 at the time) I adopted him to make it official. So, I hope that clears things up. (When my book comes out, all of this is explained, (and I used small words so as not to confuse you.))

Medical update II:

Zachary’s energy level has decreased somewhat. He is napping for about 3 hours or so every day, which is not normal for him. We also found out that he has lost about 6lbs. since he started the new treatment two weeks ago. He lost 3lbs. in Philly and 3lbs. this past week down here. We started giving him Carnation with his milk, to help with calories. Today I purchased a Cold Stone Creamery ice cream cake for Mother’s Day for tomorrow, so that should help too. My folks are coming down and we are going to cookout here, to avoid the crowds.

I hope everyone has a safe and pleasant Mother’s Day. You should all be serving your moms breakfast in bed, and pampering them all day. (Like I even have enough energy to wipe my own butt half of the time.)

Well, there you have it. An update. I hope I didn’t leave anything out. This next week should be interesting with his counts dropping. I’ll update as things happen. Let’s all hope for the best, (spit, spit, spit, mumble.)

Scott

Tuesday, May 6, 2008 4:29 PM CDT

All of us can look back over our lives and select out those amazing, special moments that we will never forget.

For each of us, those moments will represent a variety of life experiences and occasions.

For me, surely meeting Rebecca, getting married, and adopting Zachary would top my list.

Now, I have a new one to add to those special moments. Today’s special happening just ended for me, and I feel compelled to share it with all of you.

It came in the form of a phone call that I made to the pharmacy that is owned by Zachary’s insurance company. They sent me a statement in early April demanding about $700.00 from an adjustment that supposedly took place in 2007. (There was actually a charge of $869.22 and a credit from 1/5/08 for $165.39, leaving a net balance of $703.83.) I had called them when I received the statement and explained that we always meet our out-of-pocket maximum early in the year and that we should NOT owe anything. They claimed that they would investigate the issue and contact me.

Yesterday we received a new letter stating that we were past due on the entire $869.22! (It was time to make another call, but little did I know that this call would change me forever.)

Time: 3pm
[Anonymous guy #1] “Hi, thank you for calling Imbeciles-R-Us, your pharmacy solution. How may I help you?”

[Me] “I am calling about this letter that I received.” (Letter explained).

[Guy #1] “Hmmm. I don’t see where I am allowed to speak with you regarding Zachary’s account. You are not listed as being authorized on this account.”

[Me] (Snort-like laugh) “Ahh, well, actually, we have been through this about 10 or 15 times over the past several years, and YES, I am allowed to speak for Zachary. He is a 14 year old cancer patient who is sleeping in the next room as he recovers from the treatment that he received all of last week. You need to check your records.”

[Guy #1] “Please hold while I look into this.”

[Me] “Whatever, dickwad.” (Actually, I thought that, but said nothing.)

[Guy #1] My supervisor has given me permission to speak with you, just this once! What is your question?”

[Me] (I explained the issue.)

[Guy #1] “Hmm. I’m showing that Zachary’s account with the insurance company is not active; you’ll have to speak with them. I’ll transfer you and let them know what you need. Please hold.”

[Me] “OK, I’ll hold…..shitface.” (I didn’t say that last part, but in all fairness to you, the readers…I WAS thinking it.)

[Amanda – Insurance Co. rep] “How can I help you?”

[Me] (I explain the issue….again.)

[Amanda] “Hmm. What is the date of service?”

[Me] “I don’t have that information. Can you ask the pharmacy rep?”

[Amanda] “No, he hung up already and we don’t have their direct extensions.”

[Me] “But you OWN them! How can you not have a means to communicate with them?”

[Amanda] “Sir, I don’t have their extensions and I don’t have access to bills from prior to 5/07, and it appears that this is from earlier in the year than that, I’ll have to transfer you.”

[Me] “Before you transfer me, the guy from the pharmacy claimed that Zachary’s account is not active. Why did he say that?”

[Amanda] “Zachary’s account is active. The guy from the pharmacy is a moron.” (OK…admittedly, she didn’t use the word moron, but I want to believe that she was THINKING that way.)

[Me] “I’ll hold.”

Time 3:30pm

At this point in my story, you are probably wondering what on Earth possibly possessed me to classify this call as one of my all-time happiest moments. Well, you’ll just have to keep on reading, but I promise the payoff is coming.

[Tracy – Insurance Co. rep.] “Hi, how can I help you?”

[Me] (I explain the issue….AGAIN)

[Tracy] “OK. Let me get someone from the pharmacy company on the phone.”

[Me] “OK…I’ll hold.”

{Now there are three of us on the phone. Me, Tracy, and Guy #2 from the pharmacy company.}

[Guy #2] “I am looking in the system, and I can’t find the charges that you are asking about. They must be in the older system.”

[Tracy] “How do you expect me to help this customer if you can’t tell us the dates of service?”

[Guy #2] “I’ll have to transfer you, please hold.”

[Tracy] “OK.”

[Me] “Are you starting to feel my pain now? I deal with these people every year, and it is always like this.”

[Tracy] “Yes, I can see your frustration.”

[Wayne – pharmacy rep #3.] “Hi, how can I help you?”

[Tracy] (Explains what we are trying to do.)

[Me] (I’m just quiet at this point, letting Tracy do her thing.)

[Wayne] “Hmm. My screen won’t let me go back that far into the system. I can’t locate the information that you are looking for.”

[Tracy] “Look, I have been on hold for 38 minutes and none of you folks seem to be able to tell me anything. I need some answers.”

[Wayne] “Well, I’m not in the injection department, that person isn’t here right now. I can’t get you the information.”

[Tracy] “I want a supervisor on the phone, now.”

[Wayne] “What is your ID please?”

[Tracy] (Provides ID #)

[Wayne] “Please hold.”

(We hold.)

Time 3:45pm.

[Wayne] “I’m sorry; I can’t seem to locate you in the system, what is your ID# again?”

[Tracy] “LOOK, I have already been validated in the system. CONNECT ME TO A SUPERVISOR RIGHT NOW.”

[Wayne] “Please hold.”

(We hold again.)
(Me thinking…….”This crap is great! They’re yelling at each other.”)

[Jessica – Supervisor @ pharmacy company] “Hi, how can I help you?”

[Tracy] “Jessica, we have been on hold for almost an hour now, and we have been transferred several times. We have not been able to get any answers to our questions. What is going on over there?”

[Jessica] “I apologize; let me take a look at this.”

(Jeopardy music playing in the background.)

Over the next 15 minutes, I didn’t say a word. Jessica and Tracy discussed this back and forth, quoting dates, numbers, refunds, charges, adjustments, etc. Neither of them could make heads or tails of the situation. Finally, I chimed in.

[Me] “Just a point of interest that I would like to interject here. If you two can’t figure this out, how on Earth do you expect ME to understand this?”

[Jessica] “Mr. Finestone, I couldn’t agree with you more. By looking at this, it is going to take me at least another hour or two to figure this out. I agree that it appears as though you have already met your out-of-pocket each year, just as you claim you have. Give me a phone number where I can reach you, and I will let you go, so that you don’t have to hold.”

[Me] (Giving my phone #.)

[Tracy] “One more thing before we let Mr. Finestone go. Every time that he calls you folks, the phone rep informs him that he cannot speak on Zachary’s behalf. He is the custodial parent; you need to fix this in your system.”

[Jessica] “I am sorry for that; I will make a note of that.”

(Jessica and Tracy traded ID#’s and access information for each other.)

Everyone said their goodbyes, and I was done. (1 hour and 15 minutes was the length of the call.)

To hear the utter frustration and anger in Tracy’s voice when she demanded a supervisor was music to my ears. To hear her berate the other phone rep for not having the answers and for transferring her so many times gave me a euphoric feeling. For once, I wasn’t the one doing the yelling. For once, someone ELSE was on the receiving end of the crap.

Scott

Monday, May 5, 2008 6:57 PM CDT

Every new day brings a new adventure.

Today was blood counts day, and we knew going in that there really wouldn’t be any major changes yet. Philly had told us that it takes about two weeks before the blood counts start to drop. His ANC was 3,000 and his platelets were 156,000, so that all looked OK. Zachary still has a sore throat, so while he was being examined by the doctor, he had his throat checked out. Guess what? White spots on his throat, discolored tongue……yep…..thrush!

He ordered magic mouthwash and had us contact the pediatric oncologist who ordered a thrush-specific antifungal medicine. $135.00 later, we are the proud owners of a bottle of pills to knock out the thrush.

Rebecca and I returned to work today, and tried to get back into the swing of things. I don’t know about her, but I am definitely having trouble staying focused on “regular” life issues right now. With all of the uncertainties going on in our lives, I definitely need to take up drinking alcohol as a hobby!

There was some good news on the medical front today. We no longer have to wake up Zachary to give him meds anymore. In fact, one of the meds that we have been giving him since we were released from the hospital could have been stopped on Saturday. (There was some confusion between what we were told by the discharge nurse and what was written on the discharge papers.) No harm or foul though, his thyroid will have some extra protection, but he still would have been waking up for the other med either way, so there was no unnecessary sleep lost. From now moving forward to 6/10, he will only need to take the thyroid protection med once daily, so we will give that in the evening, to decrease the chances of it upsetting his stomach for the entire day. His weight today was 118 lbs. so he lost about 3 or 4 pounds while in the hospital. That doesn’t surprise me, considering that he wasn’t eating a whole bunch while he was there. He still doesn’t eat any breakfast which has bothered me for quite some time, but as we learned years ago, you can’t force food into a cancer patient. They eat when they get hungry.

The other medical news that we have is non-conclusive but interesting non-the-less. The protocol that we are on requires an MIBG scan prior to being discharged. They know that because of the super high dose of isotope that they had given him that he would light up much brighter than on a normal scan. Because of that, they expect to see VERY bright spots wherever he was lighting up prior to treatment. (Basically, you want to know that the isotope has made its way to the disease hot spots so that it can work its magic.) So the scan showed super bright spots where it was supposed to, AND it showed some new spots that hadn’t lit up prior to treatment. Now, before you all go whacky on me and start to panic, let me convey to you what the doctor told us. They have seen this phenomenon before. The theory is that Zachary had other cancerous spots that were too small to light up on a normal scan. Those same spots are now being bombarded with high doses of the isotope, so they are appearing on the more recent scan.

So, the bad news is that there are more spots than we knew about. (ie: spreading of disease.)

BUT, the good news is that the isotope has found them and is hopefully attacking those areas as you are reading this.

(Like I wrote earlier, I have not been myself lately. There is a WHOLE lot of “what if” going on in my little brain.)

I know it should be obvious by now, but I will repeat my mantra in case you have forgotten it: “Cancer would NOT be any fun if we didn’t have all of the uncertainty and worrying going on.”

YEAH! We get to wait 6 weeks for our next scan. Ooh. I LOVE waiting games!

Scott

P.S. I am still trying to figure out what kind of contest to do for a replacement for the radiation game that got messed up. Give me a day or two to figure it out. I’ll come up with something.

Saturday, May 3, 2008 7:42 PM CDT

We’re home!

Zachary was dizzy and nauseous for most of the day today. He needed a wheelchair to get from the entrance of the airport to our gate, and then again from the gate in Palm Beach to baggage claim and then to the truck. We’re guessing that these symptoms are mainly from not eating a lot lately and from being in bed for a week. Hopefully he will start feeling better now that we are home.

We have three more nights of waking up for meds. (12am, 5am, and then 8am.) I don’t anticipate the ones during the day as being difficult, but the night ones are no fun. Last night in the hotel room the alarm caught me dead asleep all three times. Oh well, three more nights isn’t the end of the world, we’ll get through it.

If Zachary is feeling well enough tomorrow, we will probably go see the new Iron Man movie. Other than that, we will be taking it easy.

We are supposed to set up an MIBG scan for 6 weeks from now, to see if the therapy worked. We can do it locally, so I will be checking with our local doctor to see if they can get the correct isotope without any problems. If not, we will do the two day thing over in Ft. Myers like we used to.

Scott

Friday, May 2, 2008 6:37 PM CDT

Zachary and I got a better night’s sleep last night. We slept from 11pm – 1am, woke up for meds and pee, and then we slept until 5am (missed our 3am pee break). Zachary was able to fall asleep after the 5am med/pee break, but I was up for the day.

When I turned my cell phone on this morning, there was a text message from Rebecca that she had sent at 2:30am. She wrote that she couldn’t sleep, had taken a sleeping pill, and would call when she woke up. Since I was better rested than the night before, I was good to go! The radiation guy came in at 9:30am and Zachary’s reading was 9.4! (Rebecca had predicted 10, I had predicted 9, and Zachary had guessed 8, so I won.)

After confirming with the doctor that a 9.4 level was low enough to make the trip to radiology for the scan, I headed back to the hotel to take it easy. Rebecca called me at 1pm or so to let me know that the doctor told her that the radiation safety guy would be returning at 3pm or so to see if Zachary’s level had dropped enough for us to get released today, instead of tomorrow. At 3pm she called me back to let me know that the level had indeed dropped to 4.5, so Zachary could get discharged. They did the scan, and I showed up at around 4pm. By the time we got the meds from the pharmacy and finished with the paperwork, we got out at about 5pm. Zachary was VERY pleased to get out of that room.

Our flight is at 3:25pm tomorrow, so we will have time to waste at the airport, but they’ve got some nice restaurants there, so we will be able to give him a good meal and not be rushed.

Until Tuesday, he is not supposed to have prolonged exposure to babies or pregnant women. He is also discouraged from using restaurant silverware. They recognize that we can’t control who the airline seats near us, but they say that it is not a problem. The guidelines take into consideration air travel.

They also gave us a letter explaining his treatment, just in case he sets off some Geiger counter at an airport. They say that it never happens, but this is the Finestone family who we are talking about. (Anyone want to bet against some drama during our trip home? I didn’t think so.)

We land at around 6pm and should be home by 7pm. We still need to wake Zachary up every 4 hours for one med and every 6 hours for another until Tuesday. Then we get to stop the one med, and the other one goes to just once a day. (I’m thinking about taking up drinking alcohol as a hobby, to help me get back to sleep.)

Scott

Thursday, May 1, 2008 6:34 PM CDT

Ahhhh…..what a difference a good night’s sleep makes. (At least that is what I have heard….I only slept 2 hours last night.) For some reason, Zachary and I did not get any good sleep last night. We slept from 1am until 3am, and THAT was it. I didn’t need to wake him up one time to pee or take medicine; he was up and watching TV or peeing on his own.

So, needless to say, I was beyond tired this morning. I also started my day with a major headache, which is very odd for me, I don’t normally get headaches. (It probably had something to do with the lack of sleep.) Thankfully, Rebecca felt a little bit better this morning, so she showed up at around 10am. Being as tired and miserable as I was, I should have left and gone straight to bed at the hotel. However, I was in the middle of our numbers drama and how it was going to affect our return trip home, so I stayed put. The radiation safety guy came shortly after 10am and the magic number was 17.5! So, Zachary went from 99, to 37, to 17.5 in just two days. The good news there is that Zachary is peeing out all of the excess radioactive materials. I also believe that it means that his level of disease is not super high. (I’m not entirely sure on that one; I have been missing the doctor. I’m pretty sure that she said the isotope will stay in the body only in areas that have concentration of neuroblastoma cells. I will try to confirm that tomorrow when we see her.)

Meanwhile, there was some additional controversy regarding our pre-discharge MIBG scan. They like to do one before you leave, so they can see if there are high concentrations of the isotope in the areas that lit up in the previous scan. This tells them that the isotope is going to where it is needed the most.

[Quick MIBG lesson.]

Right outside of Zachary’s room there is a little chart that has the following information:

MIBG is a synthetic drug originally designed for use as an antihypertensive drug and for use in detection of benign tumors of the adrenal gland. It has been used diagnostically in scans for neuroblastoma since the mid 1980’s. It was first used @ CHOP as a treatment for neuroblastoma in 1988. The MIBG drug is tagged with radioactive iodine. NB cells take up the MIBG & are destroyed by the iodine.

So, there you have it……today’s MIBG lesson.

On Monday, when we arrived, we were told that the level in Zachary had to be at or below 7 for us to get discharged. But, we were also told that his level only needed to be down to 15 to get scanned. (They can transport him in the hospital and do the scan very quickly.) The hospital does not do MIBG scans over the weekend. Today, the nurses on the floor told us that the radiation safety folks had changed the rules and that the level needed to be down to 7 for the scan. Then, another staff member joined the conversation and said that they had heard a level of 10 was adequate. As we were having that discussion, we were further informed that the radiation safety folks were just getting ready to start a meeting to discuss various issues, and I believe that one of those issues was going to be the level required for scanning.

Regardless of what they decided, the doctor informed us that they would find a way to get us scanned tomorrow, so we could leave on Saturday. (Assuming our 17.5 drops to 7 or below within the next 48 hours.) So, I changed our return flight from Friday to Saturday, and I added another day to our hotel stay.

Now, back to me not sleeping. I left the hospital at around 11am and headed back to the hotel. After entering the room, I took care of the flight travel arrangements, and then closed the curtains and shut off the lights. I set the alarm on my phone for 4:30pm; with the plan of getting at least 4 hours sleep before returning for more fun and games.

Remember what I wrote many moons ago…..”If you want to hear God laugh, tell him your plans.”

At 2:17pm I was awakened by a very loud announcement in the hotel that the fire alarm had been activated and that everyone in the building needed to make their way to a stairwell (not an elevator) and wait for further instructions. Now, what you need to keep in mind is that I was operating on the 2 hours of sleep that I had gotten from 1am – 3am, and then the 2 hours that I had just gotten at the hotel. After jumping out of bed and taking about 30 seconds to remember what city I was in, and where in the hotel (8th) floor I was located, I began the normally easy process of putting clothes on. For some reason, my socks became a major ordeal. I’m guessing that I lost at least 2 minutes fighting with them as I struggled to regain consciousness. After tackling that issue, I decided that pants would be a good addition to my outfit, seeing as I was planning to venture out into the hallway, and possibly onto the street. Unfortunately, my legs did NOT cooperate with me, and once again I lost precious time. After what seemed like an eternity, I finished getting dressed, found my wallet and cell phone, put on my shoes, and made my way out of the room. I was about 3 or 4 paces from the stairwell door when the announcement came that it was a false alarm and that we could return to our rooms.

Needless to say, I was NOT able to fall back asleep. I laid around and watched TV, got a shower, and then grabbed a bite to eat, all before heading back to the hospital. Who was it that said, “If I didn’t have bad luck, I wouldn’t have any luck at all?”

For those of you who have been trying to call Zachary, the room phone will not cooperate with us. They finally switched it out today, and the new one is doing the same thing. It flashes when a call is coming in, but it does not ring. They now think that it is a problem with the cord, not the phone. So, if Zachary is not looking at the phone, he does not know that it is ringing. I cannot see it from where I sit; there is a lead shield in the way. So, please do not be offended if he doesn’t answer your call. You can always call my cell phone first and then I will tell him to watch for the flashing light.

It is now a little bit after 7pm, Rebecca is safe and sound back at the hotel, and Zachary and I are getting ready to watch a movie. Hopefully tomorrow will bring good news and low numbers.

Scott

Wednesday, April 30, 2008 10:30 AM CDT

OK….the numbers game is over….for now.

Once again, I screwed up. Please, PLEASE keep your yelling under control as I explain why there were NO winners in this game.

Before I do that though, I promise that I will come up with another game that will reward someone the autographed free copy of the book. I don’t want everyone out there thinking that I am some kind of welcher.

I must have misunderstood or missed some of the lecture on what determines the starting number, because I was convinced that the level of disease was the primary factor, and apparently, it is NOT. Body weight, metabolism, and a variety of other factors also are important. Also, I gave all of you a range of 20 -90, and as you will see in a moment, that range was not fair, or accurate.

Zachary’s starting number was 99. (I’m guessing he did that in honor of the upcoming movie release of Get Smart.)

Obviously, a number that high had us instantly thinking that it might be months before we get out of here. (Actually we were thinking that it would delay us one or two days……but days seem like months when you are not sleeping.)

Today offered up some hope though! Zachary’s number this morning at 10am was 37!!!!! So, he was able to pee out 62% of that stuff. The doctor had told us that by Thursday, they would have a pretty good idea of when we could get released, and I’m guessing that their observation will hold true. Tomorrow’s number should tell us a lot!

So, back to the contest thing. I don’t think that it is fair to give it to the person who guessed the closest, (I think there was an 83 in there) because the range that I gave didn’t go high enough. So please be patient while I figure out how to drag you lurkers out of the closet, yet again.

Meanwhile, just to keep things interesting up here, Zachary developed a stuffy nose during the night. And to make things even MORE interesting than that, Rebecca showed up this morning feeling like crap. She is stuffed up and blowing out green boogies. So, I came back to the hotel to eat something and get refreshed, but I don’t think that I will be waiting until 6pm to relieve her. I’ll have to go in early so that she can get some more rest and try to kick whatever it is she has.

Fun, fun, fun.

My night with Zachary went relatively OK. There were a few minor bumps in the road. Apparently the first night after getting the isotope can be the most difficult. Zachary was quite nauseous, so they gave him a Benadryl/Phenergan cocktail. The problem was that it got infused a bit too quickly, and he had a burning sensation in his arm and a headache afterward. They slowed it down once he started complaining, but he ended up having about 30 – 40 minutes of nausea. After that, the biggest problem was waking him every 2 hours. We got through it though, and I’m sure that he will rest on and off during the day today.

We haven’t been able to use the computer that is in the room, because it is situated in an area that is NOT protected by lead shields. (I like to glow in the dark as much as the next guy, but I’m mostly worried about losing my last 4 hairs on my head.) We did find out that the room has Wi-Fi, and that as long as Zachary does not touch the laptop, there is no reason why I can’t be using it over where I sleep. So, I will bring it back with me later today, and who knows…..I may even update again tonight while I am sitting there waiting for our 2 hour knock on the door.

Scott

P.S. Rebecca will still have the hotel computer, lest any of you are thinking that I would rob her of her internet access.

Tuesday, April 29, 2008 8:37 AM CDT

It’s 9am in overcast, raining Philadelphia, and here is your Monday morning report:

Traffic will be heavy today as constuction continues in several areas downtown. Expect delays on both beltways as the rainy conditions have made the morning commute……..

(Not the kind of update you were looking for?)

OK….fair enough. Yesterday was quite the long day. We left the house at 5:15am to get to the airport by 6am so we could catch our 7:45am flight. Because of the late booking, the airline had us seated in three middle seats, one row in front of another. (7E, 8E & 9E). Once we had checked in, I asked one of the agents if we could get at least two seats together, so that Zachary would not be sitting alone. They worked their magic and ended up getting us 9E, 9F & 8E, so Rebecca sat with Zachary in the row behind me. The flight was relatively uneventful, I slept through most of it. (Getting only 2 hours of sleep the night before will do that to you.) The only somewhat dramatic aspect to the flight was the approach and landing. The Philly area was completed covered with low clouds, and we could not see the land until we were about 200ft. above ground. (Thank goodness for instrument rated pilots.)

When we got to the hotel, our entire flight crew was there, checking in right ahead of us. Zachary thanked them for the nice flight, and the flight attendents remembered us. When we were all trying to get elevators to get up to our rooms, the pilots had gotten on the wrong one and had to get back off and board the correct ones. (The hotel staff had very clearly told all of us which ones to use.) They joked about not being good with electronic devices and navigating. (Ha ha…..very comforting.)

After a good lunch, we made our way over to the hospital. Zachary got his I.V. started and some lab work done, and then we met with the doctor to review what would happen this week.

As luck would have it (for me) there is once again a numbers game to be played with a Zachary treatment. This one involves the level of radiation and how quickly it drops to an acceptable level for our release from the hospital. Here is how the game is played. Immediately after administering the isotope today (around 1pm or so), they will measure the level of radioactivity in Zachary. That initial number is the key to everything. The doctor has told us that the number is usually higher when the level of disease is higher. (When there are more cancer cells for the MIBG to adhere to, there is more retention of isotope, and thus a higher number is found.) They have seen starting numbers as low as 20 and as high as 90. Once they have the starting number, they know that historically, the level of radiation will drop by about half over the first 24 hours. After that, the rate will decrease at a slower pace. The magic number that we will be looking for is 7. So, if his starting number was 50 today, they would expect it to be somewhere near 25 tomorrow, and then maybe 15-20 by Thursday, and then perhaps 10-15 by Friday. Using that example, we would NOT be released in time to make our Friday afternoon flight. In fact, the doctor is guessing that we will need to change those flights. The nurses have told us that the doctors have gotten quite good at predicting Friday’s numbers based on where we are Thursday, so I will make a “gameday” decision Thursday as to what our flight arrangements will be.

The doctor said that she doesn’t like to guess what the openning number will be, so I suggested a little game of “over/under.” The way it works is this. I pick the starting number, and then the doctor has to decide whether the actual number will be higher or lower. Now, clearly she had the advantage of years of experience with this disease and a variety of children that she can draw from. I on the other hand, had only my brief 10 minute lesson on how the numbers work. Based on what I had heard, I was trying to remain optimistic that Zachary’s level of disease was not as high as many of the kids that they see, so therefore his starting number would be lower. I chose 38! The doctor was almost stumped by my number, and she actually laughed and said that it was difficult for her to choose whether to go over or under, but in the end she chose over. So there you have it. At some time today we will have our actual number, and it should be somewhere between 20 and 90. (It could be lower or higher, but the doctor felt pretty sure that it would be in that range.)

So, never being the type of person that likes to play alone, every one of you lurkers gets 1 guess. Enter it into the guest book and make sure you include your email. Everyone who guesses the correct number (assuming there is more than one correct guess) will get a chance to win a signed copy of my book when it arrives, free of charge! (If there is more than one correct answer, those names will be placed into a hat or bowl and Zachary will draw one at random.) With 100,000 hits per year on this page, I’m not taking any chances with there being 50 or 100 correct guesses.

The sleeping arrangements in Zachary room are interesting. For those of you who have been unfortunate enough to have spent any amount of time in pediatric hospital rooms, you will surely remember the chair, that when openned up, becomes a bed. (I use the term ‘bed’ reluctantly here. A bed is ACTUALLY someplace where a person would SLEEP. This device was surely designed by someone who had other intentions on their mind, because sleep is about the ONLY thing you won’t do while lying on it.) And that brings us to my next subject which is…..marriage.

Marriage is about compromise and negotiation.
Marriage is about giving and taking.
Marriage is about sacrifice.

In the TRUE spirit of a 50/50 balanced marriage, Rebecca and I came to an agreement as to how we would work the balance of staying with Zachary on the bed of torture, and sleeping at the Sheraton (the Ronald Mcdonald House was full) in the comfy room with two beds, a computer, a 36” flat screen TV, HBO, and room service. To keep things fair and balanced, this is what we came up with. On day #1 I would sleep at the hospital on the crappy bed, and Rebecca would get the comfortable hotel room. On day #2, we would reverse that….in other words, Rebecca would get the comfortable hotel room, and I would sleep at the hospital on the crappy bed. And then ever day after that, we would continue with that trend. (Unless you are REALLY slow in the brain, you caught that……if not….reread from “On day #1.)

As Dr. Phil would say, “This situation needs a hero.” Well, there is no way that Rebecca could sleep on that chair. With her arthritis, she would be in pain for days, and that was just not an option that I was going to gamble on. So, I am on night duty, and she is on day duty.

The other interesting thing that we learned yesterday is that starting today, we need to wake Zachary up every 4 -6 hours to give him meds that protect his thyroid. That process will continue for another week and half. (Fun, fun, fun.)

Well, it looks like we (Rebecca and I) will get to use the computer that is in Zachary’s hospital room after all. Once they start the treatment today in about 3 hours, he will not be allowed out of his bed, other than to use the bathroom. (They want him to try and go every two hours…..that will be fun during the middle of the night!)
But, there is a computer in the corner of the room that is connected to the internet. (I am writing this update on that computer.) So, any guest book entries or emails to us can be read to Zachary from about 7ft. away. (We haven’t met with the radiation folks yet, but the nurse seemed confident that we (Rebecca and I) would get to keep using this computer.) If that changes, we still have our backup plan of printing the emails at the hotel and bringing them to Zachary to read.

Other than that, day #1 was uneventful. I will try to update everyday, so try to keep up….nothing more aggravating than students who fall behind.

Scott

P.S. Remember….if your guesses aren’t in before tomorrow’s update, they won’t count, because I WILL be writing about that process in about 24 hours.

P.S.S. This computer does NOT have a working spellcheck, so there may be errors in this entry. Do NOT panic. My father has a built in grammar and spell check in his brain, and I promise you that any and all errors will be brought to my attention.

Sunday, April 27, 2008 9:11 AM CDT

Sometimes when I write a journal entry, it is nothing more than me trying to get ideas off of my chest. That last entry is a perfect example. I don’t know what prompted me to write that 6 page entry, but apparently it struck a chord with many of the readers. We received some amazing guest book entries, and for that I thank you! I will tell you that when I am writing an entry, I will occasionally laugh out loud if a funny thought crosses my mind, but I can’t remember too many occasions where I got emotional in the other direction. While writing this past entry, I got a little bit teary-eyed when I was typing the part about how I envision Zachary seeing himself. It’s weird, I didn’t plan out that entry at all, I just sat down and started to write about what was on my mind, and 6 pages later….there it was. Yesterday morning I woke up early, before Zachary’s bowling league and I went into Word where I have my book stored. I added that journal entry in the chapter that deals with life and living with cancer. While I was working on that, I also added several pages to the relapse chapter, to include our recent news and our plans for treatment. I guess until I send it to a publisher, it will remain a work in progress.

Speaking of treatment, we leave tomorrow morning (early) for Philly. We are scheduled to arrive there by 11am, which will give us plenty of time to get settled into the Ronald McDonald House (or a hotel if the RMH is booked up) before reporting over at the hospital for admission. Zachary has been talking more about our upcoming plans, and he seems much more onboard with the idea than when we first presented it. He told us yesterday that he has never been afraid of treatments and that he doesn’t worry about “that” part of things. His anxiety is mostly centered on the aftermath, or “How sick am I going to get from this?” (Pretty “normal” reasonable thinking…if you ask me.)

Rebecca had her follow-up appointment with her ENT surgeon on Thursday. I had promised to take her, because she knew that it might be somewhat painful, and she didn’t want to be there alone. As I sit here now, looking back on that appointment, I am torn as to whether or not it was a good idea to volunteer taking her there. On the one hand, I didn’t want to leave her alone with her young, handsome, single surgeon that she is clearly smitten over. And on the other hand, I could have done without seeing him stick a clear tube up her nose, only to then suck out red, clotty, bloody, snot matter in massive quantities.

Life is about weighing the pros and cons of an issue, and at this point, I’m thinking that the risk of losing her to the studly doctor was FAR outweighed by the gross factor of watching the procedure. (Hindsight is DEFINITELY 20/20!) Sometimes you flip the coin and lose.

Friday was a great day for us. There is a local charity organization who I have written about before, Little Smiles. They had wanted to do something special for Zachary before he returns to Philly for treatment. Their initial idea was a short getaway trip……like to one of the theme parks, or something similar. The problem was, with Rebecca’s surgery, we really didn’t have the time to take off from work and get away. So, instead of that, Zachary asked for a dinner out at Benihana’s (Japanese steakhouse) with our friends the Matuela’s. You may recall that we were at Boggy Creek with them on our last family cancer weekend. Suzanne has two children, Joe-Joe who is a cancer survivor (9 years old) and Hope, his big sister who is close to Zachary’s age. They all got along super well at Boggy, so Zachary wanted to include them in his night out. The charity offered to have a limo pick us up and take us to the dinner, so that made it extra fun for the kids. We had a really good evening, and the food was amazing. The only “hiccup” during the evening was a major gaffe that Suzanne committed during dinner.

You have to keep in mind, that Benihana’s is a respected, classy, Japanese steakhouse. The Japanese people take great pride in their culture, and their traditions. So, you can imagine our SHOCK when we noticed that Suzanne was using her chopsticks like spears, to STAB viciously at her food, instead of taking the time to manipulate them properly. Thankfully, I don’t believe that anyone else noticed, but Rebecca and I are scarred for life!

Actually, it would have been impossible for the restaurant to have been offended…..because all of their cooks were Guatemalan and none of their wait staff were Japanese. We had a young cook who did an amazing job, flinging his cooking utensils around while expertly chopping and slicing the food. As I said, it was a fun evening. Afterward, the limo driver took us on a scenic tour of Jensen Beach.

Today we will take it easy; my folks are coming down from Vero Beach with their puppy for a visit. We will have lunch with them and then begin packing for our adventure. The RMH and the backup hotel both have media centers, so I remain hopeful that I will get to post at least one journal entry while we are there. If for some reason I do NOT get the chance to do that, please do NOT panic. We should be home next weekend, so you know that I will update by this time next week, at the very latest.

Scott

P.S. I have added some new photos (to replace the ones of me and Rebecca at the beach). Our good friends the Griffins took some wonderful photos of Zachary with their children. Zachary loves the twin babies and 2 year old Colton, and I thought that the photos were quite special, so I’ve placed a few of them on here for you guys to see. I also included a couple of photos from our dinner out Friday night.

Wednesday, April 23, 2008 2:16 PM CDT

LOSING YOUR IDENTITY

No, this is not going to be a sermon on how to protect your credit cards and social security number from those who would steal your identity to rob you of your money. This is instead, a brief glimpse into the dark reaches of my mind.

Who are we? That simple question is probably easy enough to answer for most people. Think about it, if a reporter walked up to you on the street and stuck a microphone in your face and said, “Who are you?” Most of you would be able to answer that without too much difficulty. One of the following statements might even escape your lips in an effort to summarize your identity:

“I am a housewife.”
“I am a student.”
“I am a family man.”
“I am a police officer.”
“I am a doctor.”
“I am a volunteer.”

(I could go on and on….but I’m guessing that you get the idea.)

I have recently come to the realization that Rebecca, Zachary and I may be facing a “hidden” challenge to our identities that we had never envisioned. On March 16, 2000, our identities were permanently affected by the diagnosis that we received that day. There is no escaping that fact, it’s not even worth dwelling on, it is a part of our lives that will forever be ingrained in our psyche. The trick in moving forward and carrying on with life is to not let moments like that DEFINE who you are or how others view you. Don’t get me wrong here, there is no shame or negative connotation that we, or others like us, are trying to avoid. I’m just making an observation that it is nearly impossible to escape or otherwise avoid what has happened to us. It affects so many aspects of our lives; we couldn’t avoid it if we tried.

So, why the philosophical discussion all of a sudden? Well, I am beginning to notice something inside of me that is quite foreign and somewhat intimidating. I am starting to feel like I am no longer the person who I thought I was. (Could that last sentence have been any more cryptic or confusing?) And it’s not just me; I believe that Rebecca and Zachary have been living in this “altered state” for quite some time, maybe even years. Why has it all of a sudden hit me? I don’t know. Maybe I have been in denial for a long time and have avoided taking a hard long look in the mirror…..I don’t know. (You know the old saying; “Denial is not just a river in Egypt.” - [de-Nile….get it?])

Why is it that I am feeling less and less like the person who I thought I was? Is it because this disease has been so much a part of our lives for SO many years? Is it because we go for a year, sometimes two, without any major drama, only to have the rug pulled out from underneath us time and time again? Zachary has been battling cancer for 8 years. 8 years, and he is only 14 years old! That is close to 60f his life. And when you factor in that it’s the most RECENT 60nd that he doesn’t have many memories from the first 40you start to see where on most days he is DEFINED by his illness. In a perfect world, Zachary would answer the “Who are you?” question like this:

“I am a bowler.”
“I am a soccer player.”
“I am a son.”
“I am a student.”
“I am a giving person.”
“I am hopeful.”
“I am looking forward to the future.”

Instead, he is more likely to respond:

“I have cancer.”
“I am tired.”
“I am in pain.”
“I am angry.”
“I am frustrated.”
“I am worried about my future.”
“I am worried about my parents.”
“I don’t want to die.”
“I miss the friends that have lost their battle with this disease.”

As for Rebecca, I have never asked her what her perfect world answers would look or sound like, but I can guess:

“I am a mother.”
“I am a wife.”
“I have a healthy family.”
“I have a wonderful life.”
“I want for nothing.”

Instead, I think that she is faced daily with thoughts like:

“I have a son with cancer.”
“I have health issues that prevent me from fully enjoying life.”
“I am a mother who is worried that her son will predecease her.”
“I am depressed most days.”

As for me, I guess my “perfect” world answers would sound like:

“I am a husband.”
“I am a father.”
“I have a healthy family.”
“The future looks bright.”

Instead, I feel mired in thoughts like:

“I am a husband who cannot alleviate the pain of his wife.”
“I am a father who cannot find a cure for his son’s cancer.”
“I am a person who can’t remember what it is like to be without worries.”

None of us are above life challenges or personal anguish. I am not suggesting that my problems are any worse than the problems that all of you face. I am merely turning the magnifying glass around and peering into the deepest parts of my head in an attempt to see what it is that makes me tick. Like Zachary, my memories of life before cancer are fading more and more every day. I have told friends on many occasions that because of how long we have been doing this, cancer has become a way of life for us. Those words always seemed more like a tool for educating people as to what we are experiencing, but now they seem much more like a harsh reality that is becoming increasingly inescapable as the months and years pass. I’m guessing that Rebecca also has a difficult time remembering life before cancer, although she is 13 years younger than me, and her memory isn’t as affected by old age as much as mine is. But all kidding aside, my sense is that she too is living in a state of consciousness that is firmly planted in this diagnosis.

How did we let this happen to us? I don’t know the answer to that one either. Maybe it is like the cancer itself, in as much as it slowly seeps into your life with such subtle changes that you don’t catch on, until it is too late. Am I saying that it is too late….that we are beyond hope? No, I would never say that. I would like to believe that I am still an optimistic person by nature. I believe that the glass is half full. (Of 5-day old chocolate milk that my teenage son forgot to wash out, leaving me with the fun job of having to scrub it out for 45 minutes to try and get it clean.) I believe that sunny days are coming. (Global warming…..temperatures are rising, water is going to be in short supply…..we’re all going to die.)

See? I can be a positive thinker!

I guess the burning question in my gut is, WHO AM I? I thought that I knew who I was. I thought that I knew EXACTLY who I was. Now, I am not so sure. Maybe I DID know who I was, but somehow, I let that person become someone else. Maybe we all change over time and become a different person as we age and travel through the various stages of life.

Baby
Infant
Toddler
Child
Adolescent
Teenager
Young Adult
Husband/Wife
Parent
Grandparent

So why does it seem like I should be adding the word “cancer” after many of those?

Zachary

Child with cancer.
cancer.
Adolescent with cancer.
Teenager with cancer.

Rebecca & Scott

Parent of a child with cancer.
Parent of a teenager with cancer.

Is there a difference between other people defining you a certain way and you defining yourself that same way? “There goes Scott & Rebecca, their son has cancer.” Vs “Hey, nice to meet you, my name is Scott, this is my wife Rebecca, and that’s our son Zachary over there, the one with cancer.” (We don’t do that, but you get the idea.) What is our identity? Can we live in this cancer world that we find ourselves in and somehow define ourselves without it? Will Zachary EVER get the chance again to be just ‘Zachary’? When does Rebecca get to be defined without this hanging over her head?

And then there is me…….if you have been reading my journal entries for any amount of time, then you surely know already that I am beyond hope or help of any kind. If the planet blew up tomorrow, and we were all lined up at the pearly gates, waiting for our turn with you-know-who, I’m guess that he/she would get to me and start shaking his head, while saying, “Son, I’d love to let you in, but have you READ some of the things that you have written about other people in your journal entries?” And I would reply, “Well, yeah, but were you LISTENING to some of the idiotic things that those same people were saying to me?” And then he would probably say something like, “Have you not HEARD of forgiveness?” To which I would have to reply, “I forgive them for being imbeciles. I forgive them for being too stupid to know better. That kind of forgiveness?” And then he would most likely say something like, “The best that I can do is to place you on the waiting list. Take one of these vibrating drink coasters, when its red lights start flashing and it begins to vibrate, come back and we’ll talk again.”

I once heard that an economist can be compared to a person that stands on the back of a train, trying to determine where it is going, by watching where it has been. I'm guessing that what they were trying to say is that every once-in-a-while you should look out the FRONT of the train to see what is coming. I think that we are having trouble looking ahead, because we are so deeply entrenched in where we have been.

Scott

P.S. Please do NOT sign the guest book to tell me how wonderful things are or how great things are going to be. This journal entry was NOT meant as a pity party. I am just trying to do what I have always done, and that is to give you a glimpse into what we are experiencing.

Thursday, April 17, 2008 4:26 PM CDT

With each new day Rebecca makes a little more progress. She is still very congested (not being allowed to blow your nose for 2 weeks will do that), but there is a lot less drainage and I think that she has been sleeping better.

Zachary got his hair cut today. Not that it was overly long so soon after his last one, but it was sticking up in areas that were growing quicker than others, so he wanted to address that. Once again he opted for the fancy designs that they can “carve” into your head. So he has some patterns that go around on both sides and tie into the letters TJZ on the back. (The Joker Zachary). I don’t know where that comes from, but as long as it isn’t some code word that will start a gang war, I’m somewhat OK with it. He still needs the pain medicine twice daily, but thankfully that issue hasn’t worsened so far.

In an ongoing effort to provide me with writing material, Zachary’s lovely insurance company sent us an interesting letter yesterday. Basically it was informing us that they had new departments that focus on certain illnesses and since Zachary has an ongoing illness, he is eligible for support and assistance from one of their specialists. Unfortunately, they could not find a phone number of record for us, so they have been unable to contact us to give us this good news. So, being the ever-vigilant father who I am, I called them to reintroduce myself to them. After eight years of dealing with us you would think that they would know us pretty well, but apparently an introduction was necessary, because I spent the first several minutes trying to convince the phone rep that I was indeed allowed to speak on behalf of Zachary. (I think that their computer system must be archaic or something. How is it possible that we’ve had that same conversation with them over a dozen times? Why wouldn’t they have some sort of FLAG that appears on the accounts of minors to indicate that parental authority has been granted? Idiots!)

Once we got past that hurdle, I mentioned the letter and asked to get more information about the service. Like any GOOD insurance call, I was immediately transferred to another rep. (Insurance calls are no fun at all if you don’t get hung up on or transferred.) The second rep was VERY eager to assist me in getting Zachary set up on their new program for……..

(wait for it, the payoff is always good around here)

…….Zachary’s asthma!

[For your viewing pleasure.]

Me: “Ummmm. Zachary really hasn’t had asthma in many years. He is a cancer patient.”
Idiot: “Oh, well this program is for chronic/serious conditions only, we’re trying to get asthma patients on board.”
Me: “Well, as I said, he doesn’t have asthma, he has CANCER! What kind of program do you have for that?”
Idiot: “We don’t have a program for cancer, just chronic illnesses.”
Me: [silence]
Idiot: “OK, thank you for your time.”
Me: [more silence]
Idiot: “Goodbye.”
Me: “Goodbye.”

In retrospect you can’t really blame them. It’s not like cancer is a serious illness that can last for years and years. [single raised eyebrow and befuddled look on my face right now.]

Well, at least the asthma folks are being taken care of.

We were able to secure our flights for the Philly trip today. Because of the rapidly disappearing flights, we are traveling up on one airline and back on another. The good news is that we were able to get return flights to the airport we are leaving from. (Not having a car that can teleport between airports makes that little detail quite necessary.)

After Zachary’s head carving today, I took him over to his middle school to visit for a little bit. There were some materials that I needed to pick up, and he wanted to see some of the staff. They took him down to the cafeteria and let him visit with a few of his friends who were having lunch. When we left, he asked me if we could go back on another day to visit again. Little things like that make his day! Thank you to everyone at SMS for making his visit great and for lifting his spirits!

Scott

Tuesday, April 15, 2008 2:08 PM CDT

Yet ANOTHER journal entry this week, you guys are just swimming in the Finestone saga right now.

Rebecca’s surgery went well yesterday. The doctor explained to us that he didn’t need to do as much sinus work as he had anticipated, but the septum required a lot more work than they had hoped. They ended up removing the bone and leaving just cartilage. Yesterday was somewhat rough for Rebecca; she had a fair amount of bleeding and a little bit of nausea after being released by the recovery room. Thankfully, the bleeding started to slow down by midnight, so she was able to get some sleep. (We had to change the bandages every 30 – 40 minutes from 4pm until about 11pm.)

Zachary was a trooper too; he brought his laptop and watched movies all day while we waited for Rebecca to get released. We were there from 10am until 3:30pm. When we got home, I made sure Rebecca was comfortable and then realized that Zachary was nowhere to be found. I went into his room and found him fast asleep. I let him nap for about 2 hours and then served my famous matzo ball soup to them for dinner. He has been crashing for about 2 hours every day since he got home from Philly, I think that it is a combination of the medicines and the disease. Tomorrow he and I will be at the hospital most of the day. He needs to have his blood counts checked and then we have to get CAT scans of his entire body to prepare for the Philly trip.

We are still working on the travel aspect of that trip and I remain hopeful that we will be able to find flights that work for us. If not, we will be driving up (not a prospect that we are looking to tackle.)

Thank you again to everyone that has been checking in on us and signing the guest book.

Scott

P.S. Rebecca says that I am the “glue” that is holding our family together. If that is true, then why do I feel more like Silly Putty?

Sunday, April 13, 2008 9:07 AM CDT

Journal entries are coming fast and furiously, so if you find yourself reading this and getting confused, my advice (as it always has been) is to go back and read the last few entries!

I’m not manic-depressive!

I looked up the meaning of that term and found that having extreme highs followed by extreme lows fits that condition. Well, since I have never had a professional TELL me that I am manic-depressive, then I guess I’m not one!

Yesterday when I posted that short entry, I was not in a good mood. I guess there are certain truisms that should be followed in life:

1). Never grocery shop on an empty stomach.

2). Never handle a “pretty” king snake unless you have memorized the saying “Red next to yellow makes a dead fellow” or “Red touches black, OK Jack.” If not, you may be playing with a coral snake. Their bite can be fatal if left untreated.

3). Never stick a knife or fork into a toaster.

4). Never turn a teenager loose at the mall with any more money than you are willing to part with.

5). Never swim in a pond that has a “Beware of alligator” sign in front of it.

6). Never forget your wife’s birthday or your wedding anniversary.

7). Never write a journal entry when you are pissed off at the world. (You may come across as deranged or in need of psychiatric treatment.)

So, there you have it. My little lesson for the day.

There have been several emails and a few guest book entries asking for our address in Philly so that gifts/toys can be sent to Zachary. Well, here is the low down on that situation. If you get bored, go to this link:

http://stokes.chop.edu/programs/maris/MIBG.pdf

It explains the treatment that we are getting ready to try. Because of the high doses of radioactive materials that will be injected into Zachary, anything that he touches or comes into contact with during those 4 days or so, will be destroyed. Toys, clothing, etc. We can bring in DVD’s as long as Rebecca or I are the ones who handle them. The entire room is wrapped in plastic. His urine will even be dangerous. (Like I needed more urine ammunition for my journal entries.) So we will probably NOT be bringing in any toys. I’m guessing that the TV will be our friend for those 4 or 5 days.

So, if you asked for our address, my recommendation is that you send something to our home. That way it will be waiting for him when we return. (Something to look forward to.) Having said that, I feel that I should also say that Zachary is getting a lot of attention because of his condition. There are a couple of organizations that are putting together some amazing things for him, so please do NOT feel obligated to send him anything. We appreciate the thought, but we are also trying to maintain SOME semblance of normalcy amid the chaos that has been thrust upon us. For those of you who don’t follow directions well, or feel obligated to send him a card or nice note, our home address has been updated on the front page of this CaringBridge site.

Zachary was able to bowl yesterday in his league, and he actually exceeded his handicap score in all three games. His bowling partner and good friend Brandyn came over afterward and they spent the day playing games and having fun. In the middle of all of that, he needed a nap that lasted about an hour or so. (I know bad stuff is going on inside of his body when he says to a friend, “I’m going to take a nap. Go play some games and hang around so that when I wake up we can play some more.”) He would never want to miss out on playing with a friend. So for him to take a break on his own tells us that the disease and medications are taking a toll on him.

If any of you owns a time machine, I would LOVE to borrow it so that we can jump ahead two weeks and get him started on this treatment. (I looked on EBay and Craigslist but to no avail.)

Today we were invited to a small gathering of local cancer families at a bowling alley/game room/laser tag/miniature golf place. One of the families who will be there also recently received bad news about their child’s cancer, so we will be crying on each other’s shoulders as the kids are having a blast.

Scott

Saturday, April 12, 2008 11:20 AM CDT

Thank you to everyone who has weighed in on Zachary’s question. He has agreed to try the Philly treatment. We will be there the week of 4/28 – 5/2.

Scott

P.S. Sorry for the short update; we’ve got a lot to process right now.

Thursday, April 10, 2008 7:03 PM CDT

Against my better judgment I have been talked into doing something that I don’t believe has ever happened here in one of my journal entries. Young Zachary wants to put a question/message out to you, MY lurkers.

Before I pass along this question/message, it will help greatly if you have already read my journal entry from yesterday. By the looks of the guest book entries, I would think that most of North America and a good part of the free world have not only been following along, but were kind enough to pass along well-wishes and prayers. (Thank you all for that! We really do get a lift in our spirits when reading the many posts in the guest book.)

Now, onto Zachary’s question/message. But first, a word from our sponsors. Actually, there are no sponsors. I just wanted to give a little background information here so that everyone is on the same page. Zachary has a MySpace account. In the past, during one of his fits of depression, he has taken polls there asking his friends whether or not he should continue his battle against cancer. Luckily, Rebecca has many spies out there hiding in the shadows and watching Zachary’s page for us. We have addressed this with him before. I imagine that he has done this for attention (I don’t blame him for that), or possibly to “voice” his frustration with the longevity of his battle with cancer. So, with that in mind, let us NOT go overboard in response to his question/message. PLEASE!!!

“I have been fighting the cancer for a really long time. I am sick of being sick. I know my parents want me to try this new treatment in Philly, and I don’t want to let them down. Sometimes I feel like I just can’t fight it anymore. Do you think that I should try this treatment and why?”

(He knows that everyone is going to suggest that he keeps on fighting, we already discussed that. He actually tried to get me ask that you only respond “yes” or “no”. I told him that he would NOT get any “no” responses. I guess that what I am getting at here is that IF you are going to try and tackle this question, don’t take it lightly, and remember you are writing to a teenager that has been around the block a few times.)

Scott

Wednesday, April 9, 2008 10:35 AM CDT

SHIT!

Zachary just called me from Philly and told me the bad news. His cancer has progressed and they can no longer give us the chemo that we have been on for almost a year. He is very upset and says that he does not want to do any more treatments. “I am done!”

(Have I mentioned how much CANCER SUCKS lately?)

Well, it does. BIG TIME!!

Zachary’s disease has spread to his leg. He has a lump (lymph node) in the groin area that is enlarged and painful. His spine is also lighting up again. The disease is definitely spreading!

I just was on a conference call with Rebecca, Zachary, our doctor, and another specialist that was with them. They are recommending that we move forward with the MIBG therapy. It is a radiation therapy that requires a one week stay for the initial treatment. There is a 1/3 chance that Zachary’s counts would drop low enough to require stem cell recovery. The good news is that back in 2000 when he was six; our transplant hospital harvested a lot of extra bags of stem cells. So they have them waiting for us if we need them. If he does need blood products, we can do that locally, and if he needed the stem cells, they would definitely be able to do that here in Florida, and possibly locally. If not, the transplant hospital is only about 3 or 4 hours away. The earliest that Philly can put Zachary on this treatment is two weeks from Monday. They feel that during that time he would not progress enough to prohibit success with the treatment. Other than the week-long stay in the hospital, the doctor says that Zachary would be able to lead a somewhat normal life. He could still bowl and do normal activities. If he responds well to the treatment, they would recommend repeating it about six weeks later. After that, the doctors would probably put Zachary on an oral medicine/treatment to help keep the cancer from spreading. The MIBG isotope is giving through an I.V., but the doctor does not recommend implanting another port in Zachary. They can use a peripheral line (arm, hand, etc.) for any infusions or blood products that he may end up needing.

You can Google “MIBG therapy” to read more about what the treatment is like.

Our challenge now is to get Zachary onboard with continuing the fight!

Scott

Tuesday, April 8, 2008 4:54 PM CDT

This is silly, and I don’t know how I ever let you folks talk me into writing a journal entry while Rebecca and Zachary are still up in Philly. Honestly, do you not see that no matter what I write now, I will be right back in front of this keyboard tomorrow or Thursday giving all of you our three month test results? AHA! That is your master plan. Get me to write some witty and cleaver journal update today, KNOWING that I will have to follow-up quickly with another. Aren’t you the smart ones?

(That remains to be seen.)

I guess I’ll begin with our mysterious guest book poster “Diana.” For those of you that don’t regularly read the other guest book entries, (I’m thinking that you would actually have to de-lurk yourself and come somewhat close to the guest book area of the page to notice these entries) a woman named “Diana” wrote this on April 3rd. It is the second time that she has written an entry, I think the other one was almost word for word identical.

“I hope that as a 14 yr old and darn near grown, you give Zach the courtesy of knowing EVERYTHING that is going on with his cancer and the treatment, and that you don't withhold anything he has a RIGHT to know. Why do I say this? Zach's grandpa seems to know quite a bit about Zach's illness-things that I doubt Zach has been told.”

OK. Here we go again. First of all, the grandpa that is referenced in this quote has been contacted, and it has been confirmed by me that this woman is certifiable! Grandpa M. has never met her in person. He has chatted with her online, and says that she is not (in his opinion) mentally stable. I have another take on this situation. I know that the first instinct of the Finestone CaringBridge Lurker is to lash out and attack this woman. (One guest book poster has already written that they emailed her a nasty letter.) I do not advocate this. I believe that we should give her the benefit of the doubt. So here goes.

Diana is worried that we are “withholding” information about Zachary’s cancer from him and that she “doubts” that Zachary has been told everything.

OK. This is confusing to me. So, in the interest of getting answers in an adult and informed manner, here are some questions for Diana:

1). Zachary has been in treatment for over eight years. Do you think that he believes that ALL children stay in treatment this long? Don’t you think that had we NOT told him what was going on that he would have somehow picked up on the fact that all other kids get to go on with their lives?

2). Zachary is still on chemotherapy. Do you think that we tell him we’re giving him candy and that he just isn’t allowed to chew this kind?

3). From the age of six or seven, Zachary knew that any relapse with his illness would be fatal. He has been dealing with those demons for over six years now. He STILL is dealing with kids telling him that he will die and doctors not being a whole lot more encouraging than that. What part of “You are not going to live a long life,” is giving him false hope?

4). You have now signed the guest book twice that I know of. I would think that you have read at least SOME of the other guest book entries. If you have, then it is quite obvious that most folks write a message of hope or encouragement with the understanding that Zachary reads them. With that in mind, how on God’s green Earth is it “helping” Zachary for you to plant the idea in his head that his family is lying to him and keeping secrets about his treatment from him?

5). Going back to #3, (this is nagging at me). Is there a fate worse than death that we somehow missed?

6). As much as I enjoy responding to your nonsensical guest book entry, isn’t there some other activity that you could engage in besides posting guest book entries? Like maybe torturing insects with a magnifying glass. Or possibly tripping old folks as they walk past you on the sidewalk. Or what about getting a job as the person that puts stray cats and dogs to sleep when they don’t get adopted?

7). When they bring you your meals in the padded room, do they give you REAL silverware or just plastic utensils?

8). How do you type guest book entries while being securely bound in a straight jacket?

9). How much wood could a woodchuck chuck, if a woodchuck, could chuck, wood?

Feel free to answer these questions along with any other questions that the voices in your head are asking you.

(Just to set the record straight, I DID not make up this Diana person to add to the April fool’s day merriment.)

Speaking of April fool’s day, I got you guys pretty good with that one. I’m guessing that by the number of guest book entries where folks are admitting that I got them, there must be hundreds of you gullible people out there. The only disappointing aspect to that joke was the fact that at least 2 or 3 people (including my mother) didn’t realize that the faces on those photos were of Rebecca and me. I guess they looked too quickly and just thought that I had posted some celebrity photos. If you didn’t notice, go back and look closer. (I know the hair on my head probably threw you off a bit, but those are our faces!)

On a more somber note, the 11th circuit court of appeals has upheld the decision of the lower court and ruled against us in our longstanding case against the nuclear power company. I don’t know if our attorneys will pursue this further in an effort to have it reviewed by the Supreme Court, but for now, we’ve lost. Interestingly enough, we have heard from some friends that monitor these cases and they have informed us that our case made it farther than any other of its nature in this country. I guess there were a lot of government and industry folks watching this thing pretty closely. (I don’t know what that means, but I’m guessing that it means something.)

Rebecca and Zachary get back tomorrow night, so I don’t know what time I will be updating. I’ll just have to play it by ear. She called me today and had me prepay the hospital for her procedure that is scheduled for next Monday. (I had never heard of paying for medical treatment before they perform the surgery, but I guess it guarantees them that they will get paid.) I have to admit that while I was giving the young lady my credit card I was somewhat tempted to ask how much more for a tummy tuck and Dolly Parton boob job while we had Rebecca under anesthesia, but (A). I don’t know what kind of sense of humor the lady taking my payment has, and (B). I don’t like to sleep on the couch, it hurts my back! (Actually, she wouldn’t make me sleep on the couch; she would probably just cover my head with a pillow and suffocate me. But, who would blame her?)

Scott

P.S. Rebecca will not get to read this until she returns from Philly, so I want to make the following statement NOW, to avoid a problem later.

I love my wife Rebecca EXACTLY the way she is! I would NOT change anything about her EVEN if I had a magic wand. (Well now wait a minute. Would making me look like Brad Pitt and her look like Jessica Alba be such a bad thing?) Oh great! I’m done. My goose is cooked. (Wait, I can recover from this.)

All kidding aside, Rebecca is the love of my life and we don’t sit here trying to change things about each other. We love each other for who we are on the INSIDE! (Although, she does say that I have restless leg syndrome, and she also picks on me for my snoring. And then there is the occasional comment about my age and lack of hair.) Hmmmm.

P.S.S. I better quit while I’m ahead. (Actually I am so far behind right now the field is about to lap me.)

Tuesday, April 1, 2008 5:58 PM CDT

As I was writing my book and reviewing the old journal entries I couldn’t help but chuckle when seeing the old April fool’s day jokes that I played on you guys several years ago. For now, those did NOT make the cut for the book. I may change my mind and add a chapter about them, but they really didn’t fit into any of the chapters that I had set up for the book.

After reading them, I was VERY tempted to come up with a new one for this year, but my faithful followers got WAY too smart about 2 or 3 years ago and made it impossible for me to write about anything outlandish within 4 weeks of this day without the doubting Thomas’ coming out of the woodwork. So, sadly, there will be no April fool’s day joke this year. No new pets, no long lost sisters, no wild Zachary stories to have you voting on, NONE of that.

GUESS WHAT? WE JUST WON THE LOTTERY! (Not).
GUESS WHAT? PUBLISHER’S CLEARING HOUSE JUST KNOCKED ON THE DOOR! (Not.)

(I could go on forever.)

Medical update:

Zachary remains calm and without complaints. (Kaynahorah, ptuii, ptuii, ptuii.) He is now 7 days away from his Philly trip, so calm is a good thing.

Rebecca on the other hand is having increased sinus headaches. I am hoping that the air travel will be tolerated well for her. Her surgery is 5 days after she gets back from Philly.

Because of her lupus and rheumatoid arthritis, she has always had a difficult time finding exercise workouts that are not too hard on her joints. About 3 months ago she was reading online about a new concept home gym that was not too expensive, (compared to Bowflex everything is affordable) so we bit the bullet and got one. Every year we go on our family reunion vacation in June and kick ourselves for not having spent any time working out or getting in shape so that the waterskiing and tubing won’t beat the %$@# out of us. So this year we vowed to make a least a small effort to get in shape. Now, I don’t want you sitting there thinking that we’re running 15 miles/day, or doing 4 hour workouts every evening, but we have committed some time each day to work a different set of muscles. (Apparently, when you work the same ones every day it can be painful and counterproductive. YES, I found out the hard way.)

So, after three months now of doing just the minimum program that they recommend, we are finally starting to see some results. Zachary wanted to “show off” our results, (even though I only lost about 8lbs and Rebecca about 12lbs.) so we let him take a photo of us. I put it into the album, it’s the third one. (I nixed the montage of Zachary’s women.)

Scott

Saturday, March 29, 2008 11:16 AM CDT

(Typed in a whispering style)

I have officially gotten laryngitis again. It seems that about once every two years, I start to get some bug, and it immediately attacks my vocal cords and robs me of my precious gift for gab. (Any smirking or giggling that I detect from the cheap seats will be dealt with quickly and severely!)

One of the more perplexing twists of logic/fate that never ceases to amaze me when I lose my voice is the fact that Zachary, who as a teenager has practically NO use for us as parents, suddenly feels obligated to engage me in conversation. It is as if he subconsciously knows that he can go on and on about anything while I remain helpless to respond. (Maybe it is intentional; he is after all a teenager.)

So, here I sit on a nice Saturday morning writing my pitiful journal entry, while they are at bowling leagues enjoying the company of friends.

Medical news: (How long has it been since I used that in a journal entry?)

(Yeah, I know that typing “medical news” is a blast from the past in my journal entries, but the whole ‘book’ thing has me remembering some of those old classic entries.) We are one week away from our 3 month check up at Philly, and after 8 years of playing the “pre-testing nervousness game” you would think that we would be used to it. I’m not saying that we’re freaking out or anything, but this is the longest that we have gone without testing since Zachary started to progress back in May of 2007. Thankfully there haven’t been any anomalies to warrant more than the “normal” amount of fear and anticipation, but you know us, every cough, burp, ache, and pain is enough to send us over the deep end! Rebecca and Zachary will be home from that trip on Wednesday the 9th, and then she has her nasal surgery on Monday the 14th. (Between his cancer and her surgery, we didn’t have enough excitement going on, so me getting laryngitis will probably elevate our drama to a level that we are more accustomed to.)

My first week of work went well. I spent most of it learning about the processes and software that we will be using to expand our business. The company that I am working for is Referred Home Services. You should check it out online. (I’ll give you the web page here in a minute.) The president, Janet Smith, started the company to provide consumers with access to reputable contractors. Florida is notorious for having unscrupulous contractors that don’t show up when they promise, are not reliable with their work, hire help that is poorly trained or dishonest, don’t complete jobs within budget or on time, and work without the necessary licensing. Our company checks licensing, insurance, certifications, background checks, and 10 references for each category that a contractor hires us to promote for them. We do Marketing and PR to keep the companies that we represent in the news and “visible” to the public. Unlike traditional advertising, where you rely on people to see your ad, our company writes stories and gets excellent exposure for our clients.

We are now poised to expand into many other categories and territories, so the future looks exciting! The web page is:

www.referredhomeservices.com

Check it out; we may be in your neighborhood before too long!

Our squirrel saga continues. After moving the feeder out into the middle of the yard, we enjoyed about a week of squirrel-free bird action. Sadly though, in the past two or three days, we have seen squirrels on the feeder. I have yet to see how exactly the hairy rodents are getting up there, but my guess is that they are leaping over the PVC pipe, or using the tape that is positioned midway up for traction to make it over the pipe. Either way, it is time for me to try something new. If I don’t solve this problem soon, I will need to refinance my home so that we can borrow enough money to afford the bird seed that the squirrels gorge on when they get onto the feeder.

Rebecca has been kind enough to take on the challenge of reading my draft of the book and making notes of errors. So far she has found a few historical facts that I need to make corrections on, and several typos that I missed after reviewing it myself on the computer. I also need to get a copy to my dad, whose grammatical and spelling skills are freakish. Between the two of them, I should be able to get a draft ready for publishing. Then it will just be a matter of choosing between self-publishing, or submitting it to a company. (I’ll flip that coin when the time comes.)

Scott

Sunday, March 23, 2008 12:46 AM CDT

My life’s work has taken me about two weeks!

I have completed my first draft of the book. (Yes, there have been many sleepless nights and early work sessions.) What started out as a completely new collection of my thoughts and ideas regarding this wonderful disease that we call cancer, has turned into something more. I ended up writing about 150 – 175 new pages of material, and then I incorporated in a whole bunch of my “classic” journal entries.

The process of going back through every single journal entry was an interesting one. Basically I was looking for ones that were relevant to the specific chapters that I was including in my book. I think that I ended up pulling about 75 or so journal entries. There was no specific barometer that I was using, but if I started to laugh out loud (or cry) while rereading my old entry, you can bet that it made its way into this book.

Right now, without adding a section of photos, which I may still do, the book sits at 342 pages. I have already copyrighted the material, including the title, to protect myself. Now, I am going to print about 5 copies on regular paper, so that my “inner circle” of creative critics can read it through and help me make whatever minor changes that need to be made. (We all know how receptive I have been in the past when people have tried to get me to change the way that I write. I’m sure THAT process will go smoothly.)

So, to answer the question that I know many of you (like at least 4 or 5) are getting ready to ask, I do not have a firm timetable as to when the finished bound book will be available. I have two local resources that have offered to review it and present it to a larger publisher, and then I just received a guest book entry from someone that has also offered to look into some connections that they have. So, hopefully I will be able to have a best seller here within the next 6 months. (I’m also thinking about trying to win the lottery, without actually picking any numbers. I’m not sure which of those two has a better chance of succeeding.)

Zachary started on his 14th round of his chemo yesterday. We are monitoring his poop schedule like a hawk, so that we don’t have any constipation emergencies again. He has been trying to get more caught up with school work so that he has a chance of graduating with his classmates at the end of May.

Our squirrel saga has taken a sad turn. I am now officially an international fugitive being pursued by P.E.T.A. Apparently when I designed the PVC tubing contraption to surround the support pole for the bird feeder, I never anticipated the possibility that a bird would lose its life because of me. First of all, the PVC did nothing to prevent the squirrels from climbing up on the screen, looking back over their shoulders, and then leaping through the air, while simultaneously contorting their bodies so that when they made impact with the feeder (above my PVC tubes) they could grasp the pole and feeder, before commencing their feeding orgy. We have been sitting here for over a week watching this play out in our backyard. Yesterday I decided that I had seen enough, I grabbed Zachary and said, “Let’s go move that feeder out into the middle of the yard where the squirrels can’t jump onto the top of it. Well, when we pulled it out of the ground, we found a dead cardinal. Apparently the bird had dropped down the PVC tubing, I’m guessing in an attempt to retrieve some of the bird seed that was always falling down there, and then got trapped. I would have tried to revive the poor creature, but he was beyond help. The good news in all of this is that his mate has already returned to the new feeder location with a bright red companion in tow. I guess the mourning period for birds is slightly less than that of us humans. (Unless you count celebrities, then all bets are off.)

So, our bird feeder is firmly planted in the middle of the yard now, where I will have to weed whack around it when I cut the grass. The squirrels returned today and climbed the screen, alternating their stare from over their shoulder at the feeder, to back at us. The looks on their faces conveyed a message of, “What the %$&@ did you do that for? (Moron!)” You just can’t please everyone! We still will throw peanuts out into the yard for them on occasion, but as I have already written about it before, the blue jays don’t let peanuts sit for too long before swooping down and taking them away.

Scott

P.S. I got a job! I will be writing about this unique and amazing opportunity this week. Stay tuned.

Tuesday, March 18, 2008 8:15 AM CDT

Because of you guys, I got in trouble last night with Rebecca. She sco lded me for not updating and said that the Natives are getting restless. (Meaning there are rumblings in the guest book about the lack of an update.)

Well, Ive got good news and bad news. (Seems like Ive played THAT song a few times before.)

The bad news is that my prolific journal entry posting pace of late will now be s lowing down to a mere crawl. (Sorry.)

The good news is that about a week ago I started to write my book. I am probably about 20-25% done already! I was unable to sleep one night so I laid there in bed, organizing the chapters in my head, like Ive always done. When I got up in the morning, I sat down at the computer and put all of my ideas into Word. When I sit down to write, my mind is about 5 10 pages ahead of my typing. I dont know if it will ever sell, but I am going to listen to all of you that have badgered me over the years to do it, and I WILL publish this book!

It pretty much is a history of our experience, with advice and ideas on how deal with it from several perspectives. (Its happening to your family, your extended family, a friends family, or someone in your community.) As always, there will more than like ly be more than a few sarcastic remarks and colorful words, but thats the way I write, so it will either work, or it wont.

I am curious as to how many of my faithf ul fans (lurkers included) are truly interested in this book. I mean, if I only have a first printing of 100,000, will that be enough? Or if I print 6, will have some l eft over? Im sure this news will spark controversy and discussion in the guest book, so Ill leave it at that and see what comes to pass.

Boggy Creek this weekend was amazing. I have written many times about our experiences there, and every time we go back, the legend of Boggy Creek grows in our hearts. This past weekend was unusua l because of the 28 families that attended, 20 were first timers! Usually they have a more even mix of returning families, so that the virgin ones will be more likely to come out of their comfort zone and participate in the wild cheers and dances that are constantly taking place. The group we had this time was up to the challenge, and mos t of the parents and kids very quickly were joining in the fun. We were also very lucky to have two of our local families from Palm Beach join us there. Neither of them h ad been to Boggy before, so it was pretty cool to see them experience the magic for the first time. Now, I would NEVER want to embarrass anyone by using real names, so let s see, Ill change Suzannes name to Mary, and Hopes name to Sally, and Joe-Joes name to Tom-Tom. Then, while were at it, lets change Als name to Rick, Staceys name to Cindy, Samantha name to Shirley, and Zacharys name (their son is also Zachary) to John. There, that should protect them adequately from the HEAPS of embarrassing sto ries that I am about to reveal!

OK, OK calm down you guys, you didnt do anything THAT embarrassing. Or did you? I DO seem to recall seeing Al (oops, I mean Rick) standing up on a table doing the Tarzan of the Apes song. However, in all fairness to Al (Rick, whatever) I was standing right next to him. Then there was Hope, (darn it , I mean Sally) that tried to get out of dancing because of the cast on her leg. That excuse lasted about 8 seconds, and then we couldnt KEEP her off of the dance floor. And speaking of dancing, were going to change Samanthas name (I mean Shirley of course) to Dancing Queen, because she NEVER left the dance floor the entire weekend. In fact, she may have been dancing while the rest of us were sleeping, well never know. Then there was Zachary and Joe-Joe (do I REALLY need to keep us this charade of chang ing the names?) the two of them are going to need plastic surgery to remove the smiles from their faces. Joe-Joe tried to fight the spirit of Boggy Creek for about 28 seco nds, and then it was all over. By Saturday night, he was covered in spaghetti sauce from copying the other kids that were all eating their dinner without using utensils. Thats right, face first into the plate of spaghetti! Stacey and Suzanne, hmmm, another sad story of smiles that will need to be surgically removed at some point. I shudd er to think about how hard of a time Suzanne is going to have at school in her assistant principal job, trying to punish and reprimand children while grinning from ear to e ar. What kind of message will she be sending them? Sad, very sad.

Boggy Rocks! That is the moral of this story. Once you go there, you never want to leave.
The squirrel saga has not taken any new turns lately. I have looked into the squirrel-away product and will probably order it online. Im sure THAT will spark more stor ies in the future.

Scott

Monday, March 10, 2008 3:26 PM CDT
So much to write about, so little time to write. (Not really, Im just tired, and I recognize that you all want an update.)

First things first.
If you have read the guest book there is a curious entry from a woman named Diana.
Z-man is a young man now, & an attractive one at that! But he is now old enough to NOT have any secrets kept from him regarding his condition. HIS input & desires supersede those of all others, parents included.
As a friend of cranky grandpa's, I was told things. I should NOT know those things before Zach. Isn't it time to treat him with the respect he deserves?????
Diana
I dont know what drugs she is using, but I am disappointed that she is NOT sharing them with the rest of us. I have NO clue as t o what in the hell she is talking about. I dont know what information she thinks we are keeping from Zachary, but my best guess is that she needs professional help. He re is my reasoning:

A). There is nothing that we are keeping from Zachary.
B). If there WAS something that we were keeping from Zachary, how on Gods green Eart h is it any of her #$#%#@ business?
C). (See B or A)

Now, onward and upward. The job hunt continues. I have had several offers, mostly from insurance companies . I am considering only one of those, because I have it on excellent authority that this one company is definitely worth working for. There is another offer that is pendi ng; I will keep you posted as things develop.

Earlier I mentioned that I am tired. Well, it has been a long day. I wasnt able to fall asleep last night until abou t 11:30pm, and I had to be up at 4:00am to drive to Orlando to catch a plane to Pittsburgh. I actually woke up 3:00am for no good reason and never fell back asleep. The P ittsburgh trip was originally made with the goal of helping out my brother whose mother-in-law was hospitalized last Monday. Sadly, she passed away over the weekend, so th e trip turned into a funeral and support of family trip. I am scheduled to return home on Wednesday with my mother who was already up here helping out. She was supposed to leave today when I arrived, but the funeral changed that of course. Please say a prayer for my sister-in-law Angela who is having an understandably tough time with the unexpected passing of her mother Judy. I slept on the plane ride up, but there is not making up for lost sleep.

Medically speaking, Zachary is doing well. (Unless you are believing Diana). The new medical news of the day comes from Rebecca. She has been battling a sinus problem for several weeks. Her ENT has tried antibiotics sev eral times to no avail. He has also ordered scans a couple of times to monitor what is going on. His last scan from a week ago has prompted him to recommend surgery for R ebecca. She has a deviated septum, and her sinuses in between her eyes are completely closed. They want to correct the septum issue and then insert a needle to drain the blocked sinuses. The procedure is done on an outpatient basis, and we are currently working our calendar to find a week that will work for everyone. (It is NEVER dull in our house.)

The battle with squirrels has escalated. My PVC piping succeeded only in pissing off the squirrels enough to find an alternate means of mounting the bir d feeder. They now climb up the screen on the porch, look back over their shoulder at the feeder, then leap through the air and land on the feeder, where they proceed to c annibalize the seeds. I could move the feeder out further away from the house (and the screen), but now it is a matter of principle. I have researched the squirrel away product and I will be ordering it online. I was unable to find it at my local Home Depot. I have not checked Lowes yet.

That is all for now. I am too tired to co ntinue typing. I will update this weekend, probably after Boggy.

Scott

Tuesday, March 4, 2008 9:03 AM CST
Once again I am updating this page with only a couple of days having passed us by since my last update, so if you are late coming to the party, you may want to go back and get acquainted with the storyline.

(Or not.either way works for me.)

The squirrel saga continues.

My first try at squirrel-proofing the bird feeder was to try and find an object that could be attached to the thin metal pole that holds up the feeder that would prevent the squirrels from climbing up to where the food is. I tried to cut a hole in a Frisbee, but it was an old one and the plastic cracked, and it just didnt work. Then, I moved onto one of those really cheap foam swimming boards that little kids use when learning how to swim. I cut a hole in the middle, and worked it over the curves of the pole until it was about 3 off of the ground. The theory being that the squirrels would only be able to climb up to where the foam was and then NOT be able to navigate around it.

It took about 10 minutes for a squirrel to show up and easily beat my system!

I have taken a step back and put lots of thought into how I can overcome my newfound squirrel dilemma. After many hours of thought, I have narrowed down my ideas to two choices. Here they are:

#1). I went on Ebay and found where you can buy old Boeing 747 engines that are still functioning. My plan is to purchase one, and to set it in the backyard, with the business end of it facing the bird feeder. The power required for one of these things is mind boggling. I will need to purchase a large generator to facilitate the power needs. The smallest one available that will support my power needs costs $19,587.00. Once I get the generator and engine hooked up, my plan is this. I will hotwire a remote ignition device that will allow me to activate the engine from inside the house where I will lay hidden from the squirrels view. Once the squirrels mount my bird feeder and start stealing my bird seed, I will activate the engine and be rid of them forever. The one tiny glitch in my plan is this. I have been working the math, and it appears as though there is the slightest of chances that along with the squirrels, the feeder, the side of my porch, my neighbors fence, the west side of his house, and at least one of his cars, will ALL be blown about 200 yards away into the pond at the end of the street. I am trying to work a solution where full power is not applied, but apparently once you turn these turbines on, their thrust can be formidable.

#2). I can go to Home Depot and for $12.76 I can purchase two 3 sections of 4 diameter PVC pipe that I can stack on top of each other. Then I can run the support pole for the feeder through them, thus creating a very smooth 4 round pipe around the pole, which the squirrels SHOULD have trouble circumnavigating.

I am torn between these two VERY viable ideas. I may just have to flip a coin to see which one to go with.

Actually, I went with #2 late yesterday. So far, I have not seen a squirrel on the feeder. They have been in the yard, and they have been shooting REALLY pissed off looks in my direction every time that I have walked by a window to see what was going on. I think that I am now enemy #1 with the local squirrel population.

Yesterday was job fair day for me. I drove down to Ft. Lauderdale to partake in my first job fair. This was an interesting experience. I had learned of the fair on Monster.com. I followed all of the directions that they offered. They suggested registering first online, so that the recruiters that were attending would know that you were coming. (I did that.) They also suggested researching the companies that were going to be there so that you werent going in blind. (I tried to do that, but I could not find a list anywhere. I even called the hotel and asked for a contact at the organizers of the fair so that I could ask them, but they had no phone number.) The good news was that I had pre-registered and I had submitted my resume.

I showed up early, (10:30am) and the fair didnt open until 11:00am. There were about 20 or 30 people milling around in the lobby waiting for the doors to open. There was a small desk next to the entrance, with one person manning the table. They refused to interact with anyone until 11:00am. At about 10:45am, someone got the bright idea that they needed to start a line next to the table. Within about 5 minutes, the line was over 40 people long. I overheard the person manning the table say that they were wanting everyone to hand them a copy of their resume (WHY? Were they trying to build a database of job fair attendees?), and they wanted everyone to sign in. Just your signature on a piece of paper, no other contact information.

Now, keep in mind that I had pre-registered and pre-submitted my resume. So I, along with a couple of other folks that had apparently done the same thing, remained seated and comfortable while the line steadily grew. I kept waiting for the announcement, Everyone that pre-registered can bypass the line. It never came.

By the time the doors opened, the line was over 200 people long and was snaked out into the main lobby of the hotel that was hosting the event.

Begrudgingly, I got in line.

I stood in line and did my Disney ride line impression for about 20 minutes.

I handed over my resume.

I signed their sheet.

I entered the fair.

I was immediately underwhelmed.

There were 12 companies represented at the fair and 4 school/universities.

Here is the list of companies:

Aarons Sales
Aflac
Cypress Financial
Dept. of Homeland Security
Enterprise Rent-A-Car
Family Dollar Stores
Food Pantry
Orkin Pest
Phorsite Partners
Select Staffing
Value Jewelry & Loan
Wells Fargo

Now, not to in ANY way disparage the above mentioned companies, but I was NOT expecting a mere 12 organizations to attend this job fair.

The Phorsite Partners were the most organized. They are some sort of marketing/advertising company that was doing major recruiting. They had about 12 or 15 employees there interviewing and screening attendees. So, not wanting to waste an opportunity to practice my interview skills, I moseyed on up to their booth and introduced myself. Immediately, they ushered my over to their sales manager who asked me if I could spend a few minutes doing an interview with him. I obliged, and we found a table that was not being used. What happened after that was surreal.

This guy was supposed to be their national sales manager. They were recruiting for these great positions. But, the questions that they were asking were for the most part, gimmicky and bizarre. Here is an ACTUAL excerpt from the middle of the interview:

Sales Manager: You are walking down the beach and find a bottle, you rub it and a Genie appears what is your one wish?

Me: For this interview to be over. (In my head I said that, in reality I said, Good health for all of my family.)

And the rest of it was pretty much like that. I played along, and of course they want me to come back for another interview. They are supposed to call today or tomorrow, but I will graciously decline.

The other odd one was the Aarons Sales. I know of this company, they do rent-to-own on appliances and such. So, I approached the young lady and introduced myself. Now, keep in mind, that there were hundreds of us walking around trying to get face time with just 12 companies. But Aarons had NO ONE. Not one person was talking to this lady. You would think that if ANYONE approached her, she would be happy to speak with them. Well, apparently, not me.

She immediately commented that the job included collections on delinquent accounts. (Like I dont possess the capacity to pick up a baseball bat and knock a few heads in as much as the next guy.) She also insulted me by mentioning on at least 3 occasions that the job included lifting of heavy merchandise. (Like I cant lift anything over 10lbs or something.) So, that one didnt go too well either.

I spoke with Aflac, and they wanted to get back with me, but I wasnt overwhelmed with their presentation either.

The busiest booth was the Homeland Security one. I didnt bother. I could see the look on the faces of the attendees as they waited to speak with someone there, and they ALL had this look of wanting to either shoot someone, or blow something up. Maybe they thought that Homeland Security was looking for the next James Bond. I dont know. I stayed away.

Overall, I am glad that I went. Like I said, I got to practice on my interview skills, and I got to feel the rush of being drooled over by companies looking for warm bodies.

The search continues.

Scott

P.S. If searching for jobs and writing about it on here to entertain you folks was a paying gig, Im guessing that my escapades would make me a LOT of money.

Thursday, February 28, 2008 9:26 AM CST
I know that I just posted a ridiculously long journal entry a couple of days ago, and that should be enough to give you your fix for at least a week, BUT, I’ve got more on my mind. So, if you have not checked in on us for a few days, you may want to go back and read the journal entry that precedes this one.

Before I get to the “meat” of this journal entry I wanted to once again thank everyone for visiting our page and keeping up with our story. Because of you, we have now surpassed the 600,000 mark!!!

Now, where was I? Oh yeah, unemployed, broke, bald, slightly out of shape and depressed. Only kidding, I’m not entirely bald!

So I’ve been working on my resume which has been quite the education. You must keep in mind that the last time that I had to create one was about 16 years ago. Things have changed. A lot! Now, there like a billion online services for creating and posting your resume. You create a profile and then you can search from thousands of job opportunities from around the country. When you find a job that sounds interesting, you just click a button and they will magically receive your information. In theory, this sounds great, and I’m sure that the hiring companies love the fact that they can sort through hundreds of potential candidates without having to spend time on interviews until they have narrowed down the field. But, if you are the job seeker (me), then you are faced with the dilemma of not being able to put yourself in front of an employer where you have a much better shot of impressing them with your dashing good looks and charisma. (Not me, just an observation.) Then, there is the whole cover letter issue. Cover letters WERE around back in the old days, but with the advent of the internet and the conveyer belt-like system that is being used for reviewing resumes, it seems almost silly to write a letter explaining to someone that you are looking for a job and that you possess the following attributes, and that you would like for them to read your resume, which SHOWS the same attributes and is obviously being submitted because your are obviously looking for employment! It seems duplicative to me. But, then again, I’m the unemployed one, so what do I know? The other interesting fact that I have learned while trying to refine my resume is that some companies are actually using OCR software (Optical Character Recognition – A computer scans in written words that are converted into text that is recognized by the computer as opposed to just being an image of text) and then programming the software to search for key words, like “self-starter” or “motivated” or “energetic” or “strong work ethic”, etc. So, because of this new technology, there are hundreds of resume writing services out there that KNOW the process and will (for a nominal fee), help you to write the “perfect resume”. They will of course make sure that ALL of the “right” words are inserted at just the correct places and that you will have a perfect, cookie-cutter, resume! (So much for originality.)

So, after a few weeks of editing and refining, I have what I believe to be an acceptable resume. There is however one possible glitch. Now, before I tell you what the glitch is, I want to make it perfectly clear that I am forever grateful to the four unnamed individuals that have taken their time and energy to assist me with this. I sincerely appreciate their help and efforts, and I recognize that without them, I would NOT have been able to create the resume that I now possess. (There is a better than 83% chance that NONE of them read this page, but you’ve got to cover you’re a$$ just in case.)

One of the sections of the resume deals with “Additional Interests & Activities.” Now, this is where you find a way to show that you have other aspects to your life that you want to highlight. This will help a prospective employer look at you as being more human and socially involved. That way they won’t be sitting there picturing you atop a tower with a rifle in your hands trying to decide which executives to shoot first. I am still a board member for one of our local children’s cancer charities, a fact that I am quite proud of. I serve as a parent member that provides the board with the family’s perspective on issues that cover a wide spectrum. While I haven’t been able to participate lately, I have attended many meetings and events and have helped out with the charity for years. So, I obviously have that distinction mentioned on my resume. The other cancer related distinction that I have listed is that I completed the training as a contact person for one of the local cancer society’s for new families that get diagnosed.

Now, while speaking with two of my resume writing helpers, it was suggested to me that I should remove those distinctions and avoid at all costs any mention of Zachary’s illness or that aspect of our lives. The logic here is that you don’t want to give a prospective employer ANY reason NOT to hire you. Obviously the concerns would be that our family could become a HUGE burden to the company’s insurance policy. Also, there would be the underlying fear that at any moment I would become unavailable or otherwise distracted with our situation. My thoughts on this were that I could use my experience with this illness to show that I have overcome adversity, I have grown a business exponentially while simultaneously balancing family and a life-threatening illness, and that I have NOT allowed this disease to prevent me from excelling in customer service, fulfilling client’s needs and sales!!!

The problem is (I am told) that you do NOT want to have ANY issue brought up at the interview stage that can detract from the positive or that can create an environment where the interviewer is thinking, “Do we really want to hire this guy, with what he’s got going on?”

I am truly torn here. I have always strived to be an honest person. (Except for that whole sister in Alaska thing, and the then the weird monkey thing, and then all of those other things that I made up.) But seriously, this illness, and Zachary’s life over the past 8 years are as much a part of who I am as anything else. I feel like I am betraying the very fabric of my soul by going out of my way to avoid any link to this issue. I am not looking to “brag” about his disease, or any of the associated aspects of it, but I guess that by even listing my charitable activities, I am opening a door that needs to remain firmly SHUT!

This sucks. This is an eventuality that I NEVER envisioned when I put myself back in the position of being a job seeker. I would NOT have changed any of my previous actions or decisions, but being the control-freak, planner that I am, I wish I had seen this one coming.

Now I am faced with the choice of following the direction of my allies, or choosing a completely different career path where none of these issues will come into play. I have several interviews set up over the next 6 days, so it will be interesting to see what happens. At least two of those companies already have seen my resume with the aforementioned lines included. Whether or not it comes up during the interview remains to be seen.

Scott

Tuesday, February 26, 2008 11:40 AM CST
OK, I don’t know how to write about this without “freaking out” some folks, so I am just going to come out with it. BUT, (and that is intentionally a BIG BUTT) (Those of you that have seen photos of me from behind will understand), BUT, nothing has been written in stone or finalized, so no FREAKING OUT, yet.

I am no longer part of the fence company. The partnership did not work out the way that we had planned. We are in the process of extricating ourselves from the third partner who is going to keep the company, (since he is the qualifier and it is his industry.)

Now, that in and of itself is not particularly Earth-shattering news. However, when you extrapolate that out further, you realize that I am now unemployed! I have been working on my resume for a couple of weeks, since I saw the end coming. I have now begun the process of job hunting.

Once again, THAT news isn’t particularly exciting either. However, when you start doing the math, you will quickly find that jobs in this area that pay enough to support our budget are few and far between. SO, (here comes the freaking out part,) we are considering a move to another city, possibly Tampa.

(Sticking cotton balls into my ears to avoid hearing the screaming and yelling from friends that will NOT like this news.)

We actually were over in Tampa this past weekend to see a hockey game, AND to look at neighborhoods and homes. Once again, nothing is written in stone, but we do like that area, and there seems to be many higher level job opportunities in that region. I am literally at the beginning of this process, so maybe we will be pleasantly surprised and be able to stay here, you never know. In the meantime, I thought that it was only fair to forewarn you all that we may be looking elsewhere.

Rebecca and I discussed this at length, and there are obviously some essential requirements that ANY target city needs to have for us to consider a move.

1). Good access to a major airport for travel back and forth to Philadelphia.
2). Good access to a hospital with an acceptable pediatric oncology program.
3). A job that pays enough to support the lifestyle that we have become accustomed to living in. (Tent, bread, water, clothes-optional.)
4). A bowling alley for Zachary to continue his quest for super-stardom.
5). A pool hall for me to continue my delusions of skill and expertise.
6). A Target or Super Target for Rebecca to fulfill her weekly addiction to shopping.
7). A high school for Zachary (in case he can go back to school) to attend where gang colors and weapons are NOT the norm.

Other than those, most everything else that we would need can be found in metropolitan areas that have the first two items on the list.

While we were over in Tampa this past weekend I thought that it would be a good idea to check out the oncology situation. I had spoken with families before and I knew that All Children’s was the hospital where most of the people we know or have met were being treated. I called them and learned that the main hospital is in St. Petersburg which would be about a 45 minute – 1 hour drive from the areas that we were looking at. BUT, All Children’s has an outpatient clinic that is only about 30 minutes away. I contacted the clinic and set up a tour of the facility for Friday when we arrived. The place was amazing. They do infusions, blood products, OT, PT, audiology, LP’s, bone marrows, etc. all at this clinic. We were able to meet a couple of the doctors and several of the nurses while we were there. All of them were amazed to meet Zachary and to see his condition. (I had explained on the phone that he was an eight year neuroblastoma patient.) They were very impressed with his quality of life and asked us about his treatments and history.

Once again, we find ourselves being the exception to the nasty rule of neuroblastoma.

We also took some time and found one of the local high school that is in the area we liked. The staff was leaving for the day, but the principal took about 20 or 30 minutes to show us around and to get us an information packet. We were duly impressed.

The hockey game was fun (even though our Lightning lost.) We did have an amazing encounter there. I think that I have written about it before, but we have been going over every year to see a game since Zachary was about 7 years old. He had been involved with the Lightning Christmas encounter where we got to have dinner with the team and hang out with the players. Zachary made a special bond with two of their players, and we have stayed in touch ever since. Well, when we attended that dinner way back when, one of the press photos that they took was blown up into a huge poster that is about 4’ high and 7’ across. (The photo is of Brad Richards and Zachary, with Zachary opening a present that Brad had given him.) They have it on the wall in the lobby/hall area as you walk around inside the arena. So, every year, we walk up to the poster and take a photo of Zachary standing in front of it to show how much he has grown. This year, we arrived with about 15 minutes to spare before the game was going to start. So, you can imagine how many people were walking past us as we tried to snap a photo. That area is particularly busy because it is near the main entrance, and there are several food stands nearby. Zachary was standing under the poster and Rebecca was snapping his picture when a woman walked up to Zachary and asked him, “Is that you in the picture?” Zachary said yes and walked her over to us. It was Brad Richard’s mom and dad. They come down every year for about 5 weeks, and we have met them the last few years when we attended a game. Brad apparently had kept a copy of the photo on his refrigerator, and having met Zachary, they always remembered us. It was just amazing that they were walking by RIGHT when we were snapping the photo. Not to mention the coincidence of us being at one of the few games that they get to attend.

After the game we got to see Brad and Marty (St. Louis) and we were able to visit more with his parents. The players are always so nice and generous with their time, even after a difficult loss. They always make Zachary feel special and they never make us feel like we are taking up their time by visiting with us. We are truly lucky to have made that connection and to have been treated to that experience.

While waiting to see the players after the game, Zachary once again demonstrated his unwavering fearless approach to women. He asked three of the Ice-dancers if they would take a picture with him, and of course they agreed. I will try to get that one posted up on here with all of the others. While at the game we ran into the family of one of the girls that Zachary knew from Boggy Creek camp. They were seated about 5 rows behind us in a box, so Zachary spent much of his time visiting/flirting with her from just outside the box. (I offered her mom the chance to keep Zachary for a month or so, but strangely she declined the offer. I’m not sure why.)

So, to summarize, I am actively searching for employment. (Well, right now I am typing a journal update, but I DO have some resumes out there, and I also have some local companies that I am setting up interviews with.) We have NOT made any plans to move yet, we are just keeping our options open. Anyone out there in lurkersville that has any use for an out of work, sarcastic, cynical, extremely bright, egotistical, creative, delusional, 45 year old guy with 11 years of business to business sales experience, let me know!!!

You know my motto in business: “Never make it difficult for people to give you their money.” I built a successful business by following that creed. All kidding aside (like that is EVEN possible), I have excellent customer service and client management skills that have served me well for over the past 16 years.

Now, to put out any fires that might get started by you trouble makers out there, this is NOT another one of my hair-brained April fool’s day pranks. Just because you fell for the “My newfound sister in Alaska wants us to move there” prank, or the “We’ve adopted a rare monkey from the Amazon” prank, doesn’t mean that I am going to recycle a joke to get you guys. Lick your wounds and move on. And remember, I can pretty much “get” you anytime that I please. Our stories are so whacked out; you just never know when I’ve made something up. That is until I tell you!

Scott

Tuesday, February 19, 2008 3:02 PM CST
OK, I have definitely lost my touch. (Whether or not I ever had one to begin with is probably a legitimate question.) My previous update (dated Sunday 2/17/08) apparently offended at least one faithful (past tense) lurker. I received an “angry” guest book post because of what I wrote about lurkers. Now, before any of you get the bright idea to go and check the journal entries so that you can team up on the poor unsuspecting soul that wrote the comment, I have very wisely removed the aforementioned guest book entry to protect the innocent.

The reasons for me taking that drastic action are as follows: The person signed the entry with their name and email address. I wouldn’t want any overzealous individuals taking it upon themselves to start a war over this. Also, the person who wrote the entry signs their name in such a way that indicates that they lost a child to this disease several years ago. For those of you that have followed my ramblings for any amount of time already know, I have a special place in my heart for folks that have been down that heart wrenching road. Now, having said all of that, I thought that it would only be fair, having referenced said guest book entry, to post it here WITHOUT the name and email address, so that you can all see what I am writing about. So, here she is:

“Scott,

I'm one of the lazy and self-centered to share confirmation of their meager existence with us lowly folks by taking a few moments out of their otherwise carefree lives to post a few words of encouragement to those of us fighting in the trenches each and every day as we battle this disease. So here is your confirmation, Cancer Sucks. Sorry for Lurking, I'll delete Zachary's page from my favorites.”

A few of you quoted my journal entry back to me in your guest book entries, but this was the only one that was either truly offended by it, or just hasn’t been reading my updates long enough to realize that I am one of the more sarcastic SOBs on the planet. Either way, I can’t turn back the clock and rewrite that entry. (Actually, I could. I can go in and edit pretty much anything that I want to, but once again, if you know my style of writing, then you know that I let it all hang out, and where the cards fall, they fall!)

So, even though ‘anonymous’ has “deleted Zachary’s page from her favorites,” I will apologize for offending her. While I believe in my heart that I have repeatedly thanked everyone that visits here for their thoughts and prayers over the years, apparently I have strayed off of the path of righteousness. So if ‘anonymous’ happens to stop back by to see if I have addressed her perceived offenses on my part, then perhaps a fence will have been mended. If not, well, some spilt milk just can’t be cleaned up.

So, there you have it. Once again I have been thrust into a worldwide controversy that surely will eclipse the ongoing presidential races, the war in Iraq, or any other pseudo-interesting story that might come down the pike.

I am NOT looking for any sympathy or side-taking on this issue. I have included the guest book entry so you can see what got my feathers all in a plume, but there is no need to stroke my already wildly inflated ego by telling me how right I am and how wrong someone else is. (Written with a tear in the corner of my eye as I reflect on how insensitive and callous I have been over the years in my updates.)

Scott

Sunday, February 17, 2008 4:52 PM CST
You cannot tell by reading this, but I have started, deleted and restarted writing this update several times. Why all of the uncertainty with my words all of a sudden you ask? Well, quite frankly, I am afraid of “jinxing” us by writing about the ‘wrong’ things.

(Just in case) – I am crossing my fingers (and toes), knocking on wood, throwing salt over my shoulder, killing a cat, and spitting everywhere that I can without messing up the furniture.

Other than an ongoing fatigue issue, Zachary has been feeling/doing well. His week-long punishment without the computer came and went without any fights or complaining. He is still having trouble sleeping at night, and then getting tired during the day and requiring a nap. The Neurontin COULD be causing the fatigue during the day, which COULD be making him sleep during the day, which COULD be causing him to NOT sleep so well at night. Rebecca and I are not awake during the night when he claims to be waking up, so we really don’t know if he is sleeping through the night or not. We have definitely noticed that over the past several weeks he is wide awake in the morning. We were always battling to get him up, and now he sometimes gets the newspaper before I can grab it between 6:00am and 7:00am.

Other than this issue, he does not have any complaints. He just finished another round of chemo, and we have been reminding him to keep a close eye on his bowel movements.

Rebecca on the other hand has developed laryngitis. She lost her voice a couple of days ago and is still without one. I WOULD write that it has been quiet and peaceful here in the Finestone house, but I never did like sleeping on the couch, so I will say instead that I miss her sweet voice and that I am praying for a speedy recovery. She has been fighting a sinus infection that has persisted for quite some time. With her lupus we have to be careful not to let anything get to far out of control. Anything can cause a flare-up, and we are just NOT in the mood for one of those.

I noticed on the front page that we are rapidly approaching another milestone. We have over 596,000 visits to the page, so I imagine that within the next few weeks we will have surpassed the 600,000 mark. Thank you again to everyone that continues to visit and follow our story. I know that I have written it before, but we are truly grateful for everyone’s thoughts and prayers, even the lurkers who are too lazy and self-centered to share confirmation of their meager existence with us lowly folks by taking a few moments out of their otherwise carefree lives to post a few words of encouragement to those of us fighting in the trenches each and every day as we battle this disease. (Did that come off as an attack? Was it a little bit too “over the top?” Hmmm, maybe I should rewrite that. Naaa.)

Zachary’s birthday is coming up, (3/1), and we are trying to get him to finalize plans for a party of some sorts. He is torn between a few different options, and we are running out of time. Whatever happened to inviting 15 or 20 kids over for cake, pin the tail on the donkey, musical chairs, etc. and not spending over $30.00 for the entire affair? Nowadays, you invite 5 or 10 kids to putt-putt, bowling, or Chucky Cheese, and you spend a couple of hundred dollars. Oh well, that’s progress I guess.

Scott

Wednesday, February 13, 2008 10:04 AM CST
Sometimes I could just kick myself. I wrote that last journal entry “bragging” about how wonderful Zachary has been, and I’m guessing that the ink wasn’t even dry from typing that when he got into trouble again. To protect the innocent, (and not so innocent) I am NOT going to be able to expound upon the detail of said incident. Suffice it to say, it will one day appear on this page and you will understand.

At this point, I am beginning to think that ALL of the “kaynahorahs” and “ptuiis” in the world will not stop a teenager from committing stupid acts. I could rattle off Yiddish words and spit on the ground all day long, and Zachary will just keep being, well, Zachary. In all fairness to him, he has been doing much better than he was. And having spoken with friends that have teenagers, I fully recognize that things could be MUCH worse. But still, I can’t help but let myself believe that we somehow deserve a break from ANYTHING that detracts from happiness. (I recognize that I am suffering from delusions of grandeur and hallucinations.)

The second of Zachary’s two most recent episodes landed him with a week without the use of any computers. (With the exception of homework.) He had left his computer on, and not realized that the chat conversation that he had just completed was still on the screen in its entirety. Rebecca wondered in and found it. Zachary was on one of his Anime web pages where he is part of a large group of kids from around the world that talk about Japanese action cartoons. They post pictures of their favorite characters, they chat, they discuss the cartoons, etc. Well, Zachary took it upon himself to try and be the “cool” kid on there. He was using very inappropriate language, and bragging about all of the money that he makes selling a certain unnamed leafy substance that can be rolled into a joint and smoked. Had he been a “normal” kid, I might have allowed myself to believe that he was actually selling pot, but knowing that he is never out of our sight for more than 20 or 30 seconds at any given time, I was able to deduce that he was once again trying to impress other kids with what he thinks is “cool.”

We had a long talk after he received his punishment and I made it clear that he needs to “fix” that mental defect that he possess. I explained that while we give him some latitude with his music choices, he needs to take ownership of his actions and realize that if Rebecca and I start to believe that he can’t enjoy rap music without trying to copy the language and pretend to engage in the actions of the rap stars, then we will conclude that he is NOT mature enough to listen to that style of music. If that happens, then we will delete ALL of the rap music from his computer and IPod, and remove all of the CD’s from the house. As for the chatting online, he knows the rules, and he acknowledged the punishment as being fair, but he did not like to hear that he will lose online privileges until he is 18 years old if we catch him making up those kinds of stories and talking about drugs.

This has been an ongoing theme with him for several years. Because of his identity always being “That kid with cancer,” he has tried very hard to become some “badass”, “cool” kid that he believed other kids would want to be around. I’m guessing that his somewhat sheltered life has prevented him from seeing the reality of what that lifestyle is REALLY like. The kids that are ACTUALLY doing those things end up in jail, or worse and he just hasn’t been exposed to any of that. So in his mind, it’s like a video game or movie. (You push reset and start over.)

If only life were like that!

So, moving forward, I believe that I have reached a crossroads where I no longer am going to use the “kaynahorah” or “ptuii” words as a crutch to lean on when writing about young Zachary.

There are some other big changes going on in our household, but I can’t write about them just yet. (Teasing is fun, isn’t it?)

Scott

Tuesday, February 5, 2008 8:37 AM CST
To keep in line with a longstanding tradition of themes that have run in these journal entries, there is good news and there is bad news.

The good news is that everything is quiet and calm in our home. (Kaynahorah, ptuii, ptuii, ptuii. (multiplied by 999,999,999.))

The bad news is that with everything being quiet and calm, I don’t have anything exciting to write about.

Zachary has been volunteering almost every day at his old elementary school. As of yesterday I think he was up to over 20 hours of time that he has put in helping there. He is also spending more time on school work. His hospital homebound teacher is based at that school, so he is able to spend time with her there after volunteering, or she comes to the house to work with him. All-in-all, we are very proud of how Zachary has been acting lately. (Kaynahorah, ptuii, ptuii, ptuii.) (Just in case.)

Zachary is looking forward to this Saturday. He was invited with 9 other children that are facing difficult illnesses to participate in the annual “Little Smiles Stars Ball” at the Palm Beach Polo Club. The charity “Little Smiles” (www.littlesmiles.org), has this fundraiser every year. They drive the children in limousines to the ball, where they get to walk on the red carpet, with photographers snapping their photos and autograph seekers asking for their signatures as they enter. Inside, they get to attend a black tie affair that includes a fancy dinner and mingling with celebrities that attend each year. I looked on the webpage, and last year Tommy Lee Jones was one of the attendees. They have rented a tuxedo for Zachary, and he is real excited to wear one for this event.

I will write about the ball on Sunday, so that everyone can read about our adventure. I will also try to get a photo or two posted on here from that event.

Scott

Tuesday, January 29, 2008 2:16 PM CST
Before Zachary’s last trip to Philadelphia, he noticed a small pinhead sized red spot on his left eye. He also was complaining of blurred vision, especially when he was trying to read. While in Philly, he had his doctor examine his eye, and she felt that it was a normal blood spot that can develop from sneezing too hard or coughing. She saw nothing else unusual there. We were somewhat concerned, because I have read about neuroblastoma appearing in the eye in some children. Shortly after getting home, the red spot did indeed go away. Unfortunately, the blurred vision continued. I made an appointment with our local ophthalmologist, and Zachary and I went there on Thursday. They did a very thorough examination and found nothing amiss, other than a newly developed slight nearsightedness. Apparently, girls usually develop this around age 11 or so, and boys at 13 or 14, once the hormones start raging. So, once again we get to experience something “normal” for a child, even though it does, yet again, involve spending hundreds of dollars and visiting offices. Yesterday I took Zachary and the script that they gave us to our local optometrist and had him fitted for a new pair of glasses. He had asked about contacts, but they discouraged this until he got comfortable and familiar with the glasses. (Rebecca and I were also concerned about him constantly putting those not so clean hands into his eyes on a routine basis.) All-in-all, Zachary took the whole ordeal pretty well. He is wearing them more and more during the day to try and get used to them.

Other than that little excitement, there isn’t a whole lot to report. Zachary has been volunteering at his old elementary school during the day. They need volunteers, and he loves helping out, especially with the younger kids. He seems to have enough energy to last a few hours there, as opposed to a whole day at his school. And speaking of his schoolwork, he is making a concerted effort to get caught up. He still has the goal of graduating with his friends in June.

Thank you to everyone that commented on my short story. I found it a little scary that ALL of the comments came from women. I don’t know if that means that I write like a girl, or if guys are just too macho to comment on something like that. Either way, thanks for the comments. For those of you that are asking for me to explain where the character was, I have flip flopped on whether or not to say, but in the end, I have always thought that it was fairly obvious that the character was a baby. The one part that trips people up is where he is on his way out of his confinement and has the flash of thought that he will someday get to visit a place similar to one where he had just been. This was a subtle (or not so subtle) way of referring to sex. (Keep in mind that I wrote this 20 or 25 years ago. What else do guys at that age think about?)

Anyways, I am glad that some of you liked it. While I have never voiced a public opinion to the whole Pro Life / Pro Choice debate, I always wondered if the Pro Life folks would like to get their hands on this and use it in a pamphlet or something. (And for the record, this was NOT written to be a message for that argument. It was just an idea that I had and put to paper one day.)

Scott

Monday, January 21, 2008 11:19 AM CST
Zachary is doing better now. (kaynahorah, ptuii, ptuii, ptuii.) No news is definitely good news!!! He is getting caught up on school work and making up for exams that he had missed. We are trying to get him back on schedule while things are relatively calm.

I have received numerous guest book entries over the years telling me that I need to write a book. I have been planning for at least two years on compiling the many journal entries that I have written and referencing with them, the multitude of guest book entries and comments that certainly affect a lot of what I have written. I don’t know how well the finished product will fit into a book format, but it is something that I have resolved myself to do. Meanwhile, and purely by coincidence, I was looking through some old papers while searching for a receipt that I needed for tax purposes and I stumbled upon a short (very short) story that I had written many, many years ago. I can’t even remember how long it has been, possibly 20 years. The story is short enough that I can display it here for all of you to read and critique. Now, keep in mind that I wrote this in my youth! I recognize that by writing this story here, I am opening myself up for any and all opinions. All that I ask is that you don’t copy or reproduce this story for display or printing elsewhere. If you want someone to read it, please just send them to Zachary’s page.

So, without further ado, here goes nothing:

AS BEGINNINGS END

It was dark, as it had always been. If he had possessed any way of measuring the time or comprehending the passage of it, he would have know that many months had passed since he had arrived.

His meals came regularly, so that wasn’t a concern to him, and the environment was that of an antiseptic nature, so cleanliness wasn’t an issue either. Exploring his confounds had never crossed his mind, although on occasion he would adjust his position by moving his legs or twisting his arms in an effort to become more comfortable.

He was neither pleased nor upset by his surroundings. Even though he could be quite comfortable in his warm close quarters, he knew that he would be moving on soon. He wasn’t quite sure when he would be leaving or how he would know when the time was right, but deep down, he sensed that everything would happen at a natural pace.

As the days passed he noticed small changes within both his environment and within himself. There were no philosophical awareness’s that might arise out of being kept in a controlled atmosphere, nor were there any inner feelings discovered that would shed light upon what kind of person he really was. However, he did notice that as time passed, his strength increased and he also was becoming more and more aware of his immediate surroundings, which meant his senses were sharpening. He seemed to feel that he was starting to affect his environs almost as much as they were affecting him. Through all of this though, there never seemed to be any feelings of control over what was happening. It would probably be many years before he would have a true understanding of what was taking place, but that really never concerned him.

He was envied by everyone who knew him. But this wasn’t an envy brought out by hate, no, this was more like a jealousy that arose from an understanding of the simplistic care-free life that he was living. Even if those who knew him could have changed things for him, they wouldn’t have. They all wanted the very best for him. It was almost sad that from where he was situated he had no way of knowing that all of these people not only cared a great deal about him, but they were monitoring his progress and eagerly anticipating his next major breakthrough.

In the last days of his captivity he became increasingly restless. He realized that his time was coming and that he would be moving on to bigger and hopefully better things. He never once felt any remorse with the knowledge that he would shortly be leaving the warm comfortable confounds that he had grown so accustomed to.

In the last moments before his departure, there was a small almost infinitesimal flash of a message that passed through his brain. At that moment he sensed that sometime in the future, he would get to visit a place similar to the one that he had just spent so many months in. He couldn’t help but smile with the sudden realization of where he was, and then, slowly his smile began to fade and he started to cry.

Scott Finestone

Thursday, January 17, 2008 2:23 PM CST
I can write about the past few days chronologically, or I can write about the events as they rank regarding their medical importance, it makes NO difference to me. I say that, only because in the past I have taken flack for not including enough medical update information for the numerous lurkers out there that have nothing better to do while at work than to read my updates and critique them.

OK, I am going to flip a coin. (Although my brain likes the whole “chronological” theme better.) Here goes, ‘heads’ I keep it in order, ‘tails’ I do the medical stuff first.

(Actually flipping a coin now.)

OK, it came up heads. But in all fairness to you guys, I was going to write it the way I wanted to anyways.

Friday’s update was written from Atlanta. We were there for my cousin’s son’s Bar Mitzvah. It was a great opportunity to get all of the cousins together, and we had a really good visit. On Saturday, after the ceremony and lunch, we were treated to 3 hours at a game place that features laser tag and whirly ball. I had never played or heard of whirly ball before, but I love those kinds of places, so we joined in the fun. If you haven’t seen this game before, I believe you can see video of it online. Basically, it is a game played with 10 bumper cars. There are two teams of 5. The court is slightly smaller than a basketball court, and like a basketball court, there are elevated targets at each end. The targets look just like a backboard for basketball, but instead of a hoop hanging down, there is a recessed target area in the center that is about 2.5’ – 3’ across. The bumper cars are steered by a padded wheel-like device that was probably invented by some sadistic person that had double jointed elbows and shoulder joints. While driving and attempting to navigate the cars, you hold in your “free” hand (if you are brave enough to let go of the steering device) a plastic scoop-like device that is similar to a cesta that is used in jai-alai. The ball is a slightly oversized whiffle ball. As you drive around, you scoop up the ball, and then try to navigate towards your goal, where you then whip the ball with the scoop in an attempt to hit the target area. If you succeed, you team gets 2 points. You can also pass if you are at all coordinated. Now, as you all know (from the many times that I have bragged about my skill and prowess in various sports), I am pretty coordinated and competitive. The group that we had was made up of mostly 13 year old friends and family of the Bar Mitzvah boy. We had already challenged them earlier by stating that the grown-ups would kick their butts. Knowing how the 13 year old mind works, I knew that the passing aspect of this game would elude them. They would invariably want to be the one with the ball, attempting to score. The unique aspect of this game is that you can RAM the car of the person with the ball to attempt to dislodge it, or you can simply sneak up on them with your car, reach around with your scoop, and pop up under it to make the ball go flying. There was a no-slashing rule in effect; however, I think it was more of a guideline than a rule. I was able to convince my “grown-up” teammates that passing was the key to success. The first game we played was a free-for-all. There was too much bunching up with everyone attempting to get to where the ball was. I had already addressed this with my teammates and had us dividing the offense and defense so as not to have all of us congested in one corner. The kids weren’t as smart. The first game was close, but we were victorious. After that, the subsequent games became a joke. The teams ended up being mixed with little kids and grown-ups going against the teenagers, but we dominated them easily. And not to brag, (OK, YEAH, I’m bragging), but I was labeled the KING of whirly ball. It got to the point where the other team was using two of their players to block and ram me even when I was nowhere near the action, just to keep me from getting the ball and either scoring or making a pass to an open teammate for an easy score. We had them running in circles. The only downside to this game is that ramming. After several hours of this sport, you realize that you have bruises and marks on your hips and waist from the seatbelt being driven into your body by the collisions. Ah, but victory comes with a price, and it was all worth it!

We got home Sunday and attempted to go back to our normal ho-hum lives. Monday was relatively quiet, but then Tuesday popped up and threw us for a loop. As you may recall, we monitor Zachary’s poop schedule pretty closely. Ever since this summer when he got severe constipation, we ask him every day if he has pooped. He takes stool softener daily, and then we have a laxative that we use if he goes more than 2 days without results, and if that doesn’t work, we are supposed to use the Mag. Citrate. (We have never had to go that far.) Well, when you ask a 13 year old if they have pooped, I have now learned that you need to qualify that question with some more detail. Zachary’s interpretation of that question is that if he is able to shoot out a couple of raisin-sized nuggets, then he is good to go! Apparently, raisin nuggets don’t add up to a hill of beans when it comes to poop. So, there we were on Tuesday, Rebecca and Zachary had just gotten home from the bowling alley, and Zachary disappeared into the bathroom for a raisin deposit. Shortly thereafter, he came out holding his stomach complaining of severe belly pain. He pretty much collapsed onto our bed and was crying and writhing around in agony. I was on the verge of calling 911, when he convinced me that he could make it to the car so that we could drive to the E.R. He was without relief for about 30 minutes before the pain subsided. After that, the pain started to come in waves about every 10 or 15 minutes. We got to the E.R. and luckily there was no one ahead of for triage. They took all of the pertinent information, checked his vitals, drew blood, and took him back for an x-ray. All before being seen by a doctor. While the waiting area was empty, we were informed that the E.R. itself was standing room only. We arrived at about 5:10pm. We were taken back to a gurney that was in the hallway at about 7:00pm, and we didn’t see the doctor until 7:45pm. He informed us that Zachary had enough poop in his colon and surrounding areas to start a small war with. He listened and found good bowel sounds, and told us that there was no tear in the intestine or obstruction that was seen on the film. They sent us home to immediately have him drink down a bottle of the Mag. Citrate and told us that he would probably get results within a couple of hours. He ended up spending about 10 minutes every hour through the night disposing of MUCH more than the usual raisins!

We’re hoping that he has learned his lesson from this little ordeal and that he will monitor his poop schedule AND content more rigorously.

As of today, things are back to normal. (Or as close as they ever get around here.)

Scott

Friday, January 11, 2008 3:51 PM CST
OK, update time.

Zachary and Rebecca’s trip to Philly went well. The doctors feel that his disease level is still stable. In fact, they informed us that since he has successfully reached the 10 rounds of chemo level, he does not have to return to Philly for retesting until April! (We can put away those winter clothes.) Overall, they were pleased with his checkup. During a private moment between Rebecca and the doctor, she actually thanked us for our participation in the study. She said that they do not have any other kids this far out with the disease, and that Zachary is helping future kids by being a part of this study. Comments like that are always encouraging and scary at the same time. Encouraging because we recognize that he is doing well, in their eyes as well as ours. And scary because there really are NOT other children that we can look to for advice when it comes to having paved the way for our future.

My ordeal with the kidney stone seems to be going OK. I believe that the E.R. doctor was correct when she guessed that I probably got a urinary tract infection along with the stone, because for the past 24 hours I’ve had to pee like every 3 ½ minutes or so. The good news is that there has NOT been any other pains or scary issues. (Kaynahorah, ptuii, ptuii, ptuii.) I will see my regular doctor on Monday, so hopefully I will be able to find out what changes in my lifestyle I need to make to prevent future stones.

Scott

Tuesday, January 8, 2008 7:24 PM CST
Rebecca and Zachary are up in Philly doing the whole “six week testing thing.” They flew up yesterday, had the echo of the heart and the injection for the scan today, and tomorrow they will do lab work, get the scan, and see the doctor. Hopefully everything will go well!!!

So, with them out of town, I figured that it was a good time to schedule some “Scott time.” You know, I had dinner out and was able to relax and not rush. I went to Best Buy to look for a DVD that I had been wanting to get, I shot pool for a couple of hours with some friends, I watched my movie when I got home, I checked some stuff out online without being kicked off of the computer, I watched some news, and then went to bed to sleep a peaceful and restful sleep!

Until.

Until? Why would you type a word like ‘until?’

Because, there is a HUGE UNTIL in my story that needs to be told.

But why the drama? You had a relaxing evening; you didn’t have to DO anything hard. Why not just leave it at that?

Because, as I said, there is a HUGE UNTIL hanging over my story.

OK, drama queen, give everyone your “HUGE UNTIL.”

As I was saying (writing)(typing), before I interrupted myself, everything was great, UNTIL about 3am. I woke up and had to go to the bathroom. (#1 for those of you asking.)

THAT’S IT? THAT is you’re HUGE UNTIL?

If you would let me finish, you would see that I am going somewhere with this story.

WHATEVER.

So, where was I? Oh yeah, 3am, peeing. I went to the bathroom without any drama, but when I got back to bed, I immediately noticed that I once again had the sensation of needing to pee. Hmmmm. I got BACK up, and went BACK into the bathroom, only this time, no luck. I wrote it off to getting older and went back to bed. At around 5am I woke up and instantly knew that things were not right in my world. I thought that I had to go to the bathroom, but as soon as I stood up, I got whacked with pain in my kidneys. I have never had kidney stones, but I had a good friend that went through it, and with all of my medical training, (second-hand doctoring can get you into trouble,) I had a gut instinct that I needed to prepare for a visit to the E.R. When I got into the bathroom, the nausea hit me, hard. I couldn’t bring up much, but I did give it the ole college try. By the time I finished trying to heave my feet out through my mouth; my kidneys were REALLY starting to hurt. I had taken the phone into the bathroom with me. Knowing that I was alone, and that kidney stone pain can increase exponentially, I didn’t want to risk collapsing on the floor and not being able to call for help. After my heaving episode, I started to get into my logic mode. I was packing a small bag for the hospital, (toiletries and such) and trying to get dressed. I made it about 2 or 3 steps and realized that there was NO way that I was going to be able to drive myself. I debated on whether to call 911 or my business partner (he lives two streets over.) I finally settled on my partner and continued with trying to get dressed. By the time he arrived, I was packed and ready to go. 1 small bag, house keys, pink vomit bucket (courtesy Zachary's travel days). I barely was able to walk to his truck, but I managed to get myself buckled in. The hospital is about 10 minutes away, but it seemed like 40. About half way there, I mentally patted myself on the back for bringing the bucket, it got used. I did have the foresight to open the window so as not to totally assault my partner with the smell. We got to the emergency room, and thankfully it was empty except for one guy who was ahead of me. I sat down and my friend signed me in. That was when the pain REALLY started. I could barely stay seated. The triage nurse took a painfully long time to get to me. When she finally did, I needed a wheelchair to travel the 12 feet from where I was sitting to where they were set up to take vitals. By that time, I was close to passing out. I vaguely remember them putting a blood pressure cuff and a pulse oximeter on me and taking my temperature. The pain got so intense, I couldn’t see straight. My relief came in the form of more retching. That was the only time that I could get away from the pain. After that, I was able to give the nurse my medical history. “No drinking, no smoking, no surgeries (other than colonoscopy), nothing interesting.”

She then had me wheel over to sit and wait to get back with the doctor. Unfortunately, there was only one doctor on duty, and apparently there were a ton of patients already back in the ER, so I was going nowhere fast. Fortunately, after that intense pain session I didn’t have another one. I did feel the need to pee, and the triage nurse encouraged me to try, so she gave me a collection cup and sent me rolling into the bathroom. Thankfully, I was able pee. I secured their sample and wheeled out to the waiting area. Because they were understaffed and overcrowded, I was in the waiting area until after 7:30am. Luckily, I was just tired and feeling like I still had to pee, without the pain. When I finally got taken back, they started an IV, gave me some Zofran and a non-narcotic pain med, and then took me back for a CAT scan. The scan showed no more stones. The pee sample didn’t produce one either, but there was blood and crystallization, both indicators of kidney stones. That, along with the intense flank pain and vomiting pretty much sealed the deal for them. They gave me some fluids and kept me comfortable until about noon and then sent me on my way with a script for an antibiotic. (Stones can be accompanied by UTI’s.)

So, that was my adventure for the day. I took it easy for the rest of the day today, went and picked up my meds and will go to bed early. Hopefully it will be an uneventful night.

Scott

Wednesday, January 2, 2008 9:45 AM CST
HAPPY NEW YEAR EVERYONE!

(May it be a healthy and prosperous New Year for all of us.)

As part of my long list of New Year’s resolutions, I am going to address in this journal entry an issue that has probably affected many of you out there reading this on some level. That issue is addiction.

Addiction has for too long been an issue that gets buried in the dark corners of a family’s closet, not to be discussed or talked about. Well, I am going to break that trend and open up our lives to the world at large. As you all probably know, addiction can come in many forms. There is narcotics, gambling, sex, alcohol, food, and the list goes on. Today, I want to speak specifically about two of the addictions that I mentioned on that list. Narcotics and food. The reason that I am choosing those two in particular, is because I believe that Zachary and I have fallen prey to a twisted and sinister plan to confuse and addict unknowing American people.

Zachary and I are coming clean; we are addicted to Harry & David’s Royal Riviera Pears. Well, to be more specific, we are addicted to the crack cocaine that Harry & David’s quite obviously puts INTO their Royal Riviera Pears to get folks like us addicted. At nearly $3.00/pear, they have developed quite the little money making scam. They buy these supposedly “naturally grown” pears for probably $.05 or $.10 each, then they inject them with copious amounts of crack cocaine, and then they ship them out to you directly, or wait for you to innocently wonder into one of their crack houses, (Harry & David Stores) where they have stacks and stacks of the pears ready for you to take home and overindulge in.

When I think back over the years, I feel foolish for not having figured out what they were up to. I can remember when my folks first started sending me those holiday canisters of chocolate covered blueberries about 15 years ago. I should have known then that NO kitchen could come up with something so delicious that once you eat a few, you are unable to function during the day unless you bring some to work with you. THAT my friends, are the drugs doing their evil work on your body!!! If you have never tried one of the Harry & David Royal Riviera Pears, I can only beg you to abstain and save yourself from the agony and torture that comes with not being able to afford to maintain the habit. I can promise you this though, once you have bitten into one of these green monsters, you will have opened a door that is NOT easy to close.

You have been warned.

I have done my job.

Now onto other issues. I have noticed a few comments about the Wii in the guest book. If you are truly interested in getting pointers on how to obtain higher bowling scores or better golf scores (my two areas of expertise), then please email me and I will provide you with the necessary information. Please keep in mind that clues and answers can only get you so far. At the end of the day, you can’t replace God-given talent, like my own. In the golf target practice area I posted a whopping 725 points. I know it is hardly believable that a human being could possess such skills and expertise, but it is true. If you need further proof, I will snap a photo of the screen that shows my many accomplishments. (It’s my modesty that I respect the most, don’t you agree?)

Zachary and I try to bowl against each other at least once per day. He does win every so often, so he is getting better. He loves the Naruto, Super Mario and Guitar Hero III games the most though.

Scott

P.S. Admitting you have a problem is the first step to recovery. Excuse me for ending this entry earlier than I had wanted to, but I am hankering for a pear, and there only two left, so I better run to the refrigerator to make sure I get at least one of them.

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