History

Tuesday, May 1, 2012 5:35 PM CDT

Zachary's high school, JBHS, contacted us yesterday with wonderful news. They have decided to award an honorary scholarship to Zachary on May 22 when his classmates will be graduating. They will also keep an emtpy chair for him. We will of course be attending....crying.....celebrating with his classmates. (Invest in Kleenex now....make a fortune.)

Oh...and the Great Dane story was another of my April Fool's jokes. If you weren't familiar with any of my past ones...you'll have to go back in the history of journal entries and look for them. If you actually were fooled by this one...don't feel bad..you're in excellent company!

Scott

Sunday, March 25, 2012 8:53 PM CDT

Well it sure seems like it’s been quite a while since I’ve updated the Caringbridge page, so I figured I would take a few moments out of my busy schedule to bring everyone up to speed on what’s going on in our lives.

Rebecca has been on a roller-coaster ride with her Lupus lately. She had to quit working at Publix because of all the time she was missing from flare-ups. She does some occasional baby-sitting for a friend, but other than that, she is “manning the home front.” Her favorite past time now is to chase after Brandyn to make sure he is keeping up with his chores, homework, etc. Other than that, she spends several hours/day mastering her skills at Words With Friends and Draw Something on the IPad.

Brandyn on the other hand has his own set of priorities. He spends most of his days trying to AVOID Rebecca and her reminders of the chore list and homework. Between doing the dishes, keeping the floors clean, wiping the counters and taking out the garbage twice a week, it’s no wonder that he NEVER has any time to clean his room….besides….isn’t it just easier to throw all of your clothes on the floor….as opposed to using the drawers and closet? School seems to be going better this semester than it did on the last one. While I haven’t actually seen any report cards or online grades….Brandyn assures us that he is doing well.

Toby the cat is well……still a cat. He is neurotic, psychotic, and absolutely the dumbest dog I’ve ever owned. I just don’t get it. No matter how many times I pet him or rub his belly till he purrs like a little kitten, he STILL avoids me and refuses to come when I call him……….I hate cats. (More on this in a minute.)
Work for me has been great lately. I am still keeping busy running my district in West Palm Beach. Every day brings new and exciting challenges.

I guess the BIG (REALLY BIG) news in our lives is that we are adopting a Great Dane. A long-time friend of Rebecca’s is moving up north to be family. She recently split with her boyfriend, and they had a Great Dane together. The boyfriend wants nothing to do with the dog, and unfortunately Rebecca’s friend cannot take it with her to her parent’s place up north. Somehow we got “roped” into agreeing to take the dog. Initially I tried to put up a fight, “What about Toby, our precious cat?”…but Rebecca knew that was bull#%^@, because I would pay money to see a Great Dane have its way this cat….(not really…but you know what I mean,)…..I was actually concerned with the massive turds this monster will be dropping all over our pristine back yard. And who exactly is going to be cleaning up after this mess…..Brandyn?......HAAAAAAAA…..Rebecca?.....Not likely. Hmmm…who does that leave? We’ll be getting this small horse the end of the week, so I will make sure Rebecca posts photos on Facebook. I’m guessing our peaceful evenings are about to change forever.

Saturday, December 31, 2011 9:00 AM CST

Well......my book finally has made the conversion from paperback to E-Book! You can now find my book, "Cancer Only Sucks on Days That End in 'Y'" online at Xlibris.com and Barnes & Noble.com. For a mere $3.19 you can purchase an E-Book version of my book.....(B&N is $3.19....Xlibris is $9.99).

(I guess 3 or 4 more people will get to read it now!)

Monday, December 5, 2011 5:27 PM CST

Here is a copy of the holiday letter that we sent out this year. It pretty much gives the "Year in Review."

Here we are approaching the end of another calendar year, so it must time for an update/review of the past 12 months. I guess I should start with the good news, the world didn’t end this year….not even once...contrary to the predictions of that lunatic Preacher. So, with the Earth still rotating on it’s axis, life has gone on. Our first excitement this year came in February. We adopted a bouncing 18 year old baby boy named Brandyn. (“Adopted” is kind of an exaggeration, it was more like a rescue, you know, like a stray dog that you take in and then can’t get rid of.) Brandyn was Zachary’s best friend. They met at bowling, and Brandyn was always there for Zachary. He spent countless hours keeping himself occupied, waiting for Zachary to wake from naps, so that Zachary would have someone to play with. He never asked for anything from us, and we’ve tried to help him over the years. So, when his family imploded in February, we offered him a room. (It was supposed to be like Gilligan's Island, a 3-hour tour, but here we are 11 months later….) Brandyn was still in high school and didn’t have his driver’s license yet, so we helped him do that, and then I traded my pick-up truck for two used cars, one for him and one for me. He started working at CVS in March as a cashier, so he pays for his own insurance and gas money. He graduated with honors from high school and is now taking pre-nursing courses at a local college. (We’re so proud.) March 15th was our 13th wedding anniversary, and neither of us has tridecaphobia, (fear of the number 13) so no bad luck there. In April we took our 1st overnight motorcycle ride and went to Leesburg, Florida for a bike rally with friends. May’s excitement came in the form of a second finger surgery for Rebecca. Last year she got a small cut on a finger that got infected and ended up needing surgery. This year, a finger on the other hand had the same issue. The bad news is that her immune system is compromised from her Lupus, so she is more prone to infections, the good news is that she only has 6 fingers and 2 thumbs left to do surgery on, so by 2019 we should be free and clear from these surgeries. In June we went on a cruise with friends, we saw Costa Rica, Panama and Mexico. Zip- lining, rain forests, booze….it was all good! In August Rebecca had to officially resign from Publix due to her ongoing health issues. Standing all day just became too much for her. She babysits for a few friends at home, so that keeps us in “Saturday Night Movie Money.” (Popcorn included.) In August I did a sleep study to address my sleep apnea. I have a mild case, (I only stop breathing for about 20-30 seconds, 6-8 times per hour) but apparently “not breathing” is a BIG deal to some doctors, so I now use the CPAP machine at night. (It sounds like Darth Vader breathing.) In September we traveled to Tennessee to spend some quality time with both my brothers and their families at the lake house my big brother has. We did waterskiing, wakeboarding and surfing behind the boat! Work for me also got interesting in September. I have been training for quite some time to become a District Manager, and in September I was given the opportunity to be “Acting DM” while my boss was away working on a project. That project will run through January, so I have the entire district now and I am getting great experience in this position. October brought us Rebecca’s birthday, and if you ask Brandyn, he’ll tell you that her birthday gift is the “Greatest gift you every bought US.” (Not her.) She has wanted a Kitchenaid mixer for the kitchen, so I bought one. Now she is making the most incredible desserts you can imagine. The bad news is that I now weigh 583 lbs and have to be moved around in a wheel barrow, but the chocolate covered Oreo balls are worth it!
Rebecca, Brandyn and I wish everyone a Happy Holiday Season and a healthy and prosperous New Year! (At least until December of 2012 when the Mayan calendar predicts the end of the world will occur.)

Monday, June 27, 2011 6:22 PM CDT

Dear God,

Please don’t be upset with me for writing to you in this fashion. We don’t attend a house of worship anymore, so I felt that this would be a good way to get a message to you. By now, I am sure you are aware that we lost our son Zachary on January 15th of 2009 after a long battle with cancer. I only mention this because I recognize that there are so many people in the world and it must be difficult to keep up with everyone. So, here we are 2 ½ years after Zachary’s death, and I am finally writing to you with a question. Now, I’m sure most people reading this are predicting that I will ask the obvious question……why Zachary? I will not. I can’t imagine that there is any good way to answer that question, so I will NOT ask it. My question is MUCH more selfish.
I realize that the healing process for folks in our situation does not have a quick and easy fix. As I mentioned earlier…it has been 2 ½ years. My confusion comes from the horrific and unending nightmares that I have endured over the past 2 years. To some extent, I get it……..I’m tortured by the memories. Memories of his death, memories of the good times lost…….you get the idea. What I’m having a tough time wrapping my head around is why I have these night terrors EVERY SINGLE NIGHT. I honestly can’t remember the last good night’s sleep that I had. And, on top of the constant onslaught of dreams where Zachary is there, but he’s sick, or already dead……but still moving around and talking….but gone at the same time…..THOSE dreams have been particularly tough……….but on top of that, now I’m having dreams where he is there not once, but twice….both as a young child, newly diagnosed…….but dying of cancer….AND as a teenager……fighting cancer, but already dead….two at once. Why? Why? Why?
For the most part, this question is rhetorical…..if you were to actually answer me, I would probably drop dead from a heart attack…….but, seeing as I haven’t updated this page in a while, I figured I would kill two birds with one stone and take a shot at passing along my frustration/heart ache that I am enduring. If I were still in therapy, I’m guessing that the therapist would tell me that you (God) have nothing to do with this dilemma, that it’s literally “All in my head.” I get that. It makes sense……….to some degree. But then I try to rationalize the degree with which my nightmares have escalated to and I just can’t wrap my brain around any good explanation as to WHY they keep getting worse. Again…I’m not expecting some miracle cure for my woes…….I’m just reaching out to you in the off chance that you’re listening. If you are……..I would greatly appreciate it if you could dial back the nightmares to just ONE Zachary dying per night. Two at a time is overkill….(no pun intended.)

Thanks,

Scott

Thursday, April 14, 2011 6:55 PM CDT

What I Want

I want my son back
I want to lose the memories of his pain
I want to lose the memories of his final hours
I want my pain to go away
I want to tell my son the things that I forgot to say
I want another chance at easing his fears
I want to KNOW that he is at peace
I want to KNOW that I’ll see him again some day
I want to sleep without nightmares
I want to find a way to make sure no other family has to endure this
I want my son back

Sunday, March 13, 2011 11:23 AM CDT

If Sigmund Freud were sitting in my living room today, I’m sure he would have numerous comments regarding our latest undertaking.

Many of you know of our good friend Brandyn. For those of you who don’t, Brandyn is an 18 year old senior at the local high school who was Zachary’s best friend. Zachary and Brandyn met at Saturday morning bowling when Zachary was about 12 years old and Brandyn was 13. They immediately formed a bond, sharing interests in everything from bowling to Naratu. What made this particular friendship unique for Zachary was the amazing selflessness that Brandyn exhibited towards him. After bowling each Saturday, Brandyn would come over to the house to keep Zachary company. On most days, Zachary would be tired from the bowling and need a nap. Brandyn would keep himself occupied with the Wi, TV, or a book….and he would sit there without complaining for hours, waiting for Zachary to wake up so that he could be there to play with him and keep his spirits up. On days when Zachary had to travel to West Palm Beach for testing or blood transfusions, Brandyn would tag along….and once again he would play games with Zachary, and keep him entertained. And, once again, when Zachary would fall asleep from the Benadryl that the nurses gave him to prevent reactions from the blood products, Brandyn would keep himself busy and never ever complain. And when Zachary would wake up, Brandyn would be sitting there waiting to play more games or to watch a movie. Brandyn was always there for Zachary, and I honestly don’t know if Rebecca and I would have ever gotten through some of those years had he not been there for Zachary, to help keep him grounded and to help make life somewhat more normal.

So, two years ago, after Zachary passed away, when Brandyn wanted to get his driving learners permit and he didn’t have the money to afford it, it was a no-brainer for us to give him the money. Then, a year later when he wanted to take the CNA course and again didn’t have the funds, we didn’t hesitate to step up and write that check. At Christmas time, we were discussing a gift for Brandyn with our good friends the Wahl’s, and someone came up with the idea of getting him his own cell phone. He was sharing one with his two younger sisters. We bought him one and added him to our plan. Then, about a month ago, Brandyn had a falling out with his father. His mother lives out of state, so, at 18 years of age, he decided to stay at a neighbor’s house for a couple of days until things calmed down at home. Well, a couple of days turned into a few days, and then it became clear that going home was not the best course of action. Once we heard what was going on, we offered Brandyn a room in our house. We made sure he was still letting his father know where he was staying. So, Brandyn moved in and things started to change around here. As my mother said with her New York wit, “It’ll be good for you to have the pitter patter of little feet around the house again.” One of Brandyn’s big issues at home was that fact that he had been driving on a permit for two years and hadn’t been allowed to get his license. We did some research and quickly found out that insurance for an 18 year old new driver costs slightly more than the national budget for a small European country. Once confronted with this fact, it became clear that for Brandyn to get his license, he would need a job. We helped him on that front, and then came the classic catch-22. He needed a license, car, and insurance so that he could get back and forth to work, and yet he needed the money from work, to afford the license, car and insurance. (In for a penny, in for a pound….that’s what I say.) Rebecca and I discussed this at length, and there appeared to be a few options. We could try to find an inexpensive used car and hope that it held together and was safe enough for him to use, or we could spend a little bit more and find something more reliable. We first tried the inexpensive route. I went to a local used car dealer and found an old Honda that they were only asking $2,000 for. I took it to a local mechanic friend of ours, and quickly got an education on looking for used cars. He told me the car had more oil leaks than the oil rigs in the Gulf of Mexico and that it wasn’t worth $500. He also informed me that this particular used car dealer was in court recently defending 17 small claims cases against him in 1 day. Not a good track record. Once I accepted the fact that I’ll NEVER be a mechanic, I started to think about other options. I could buy a car from a private seller, but then again I’d be back in the uncharted waters of mechanical uncertainty. While speaking with the untrustworthy used car guy, I got the brilliant idea to ask what my truck was worth. My thought process on this was simple. If my truck was worth enough money, I could maybe trade it, or sell it, and then buy 2 more reliable vehicles, one for him and one for me. Now, I’m sure some of you are thinking, “What are you…..NUTS? You love that truck. That was the first thing you purchased when you sold your company back in 2007. That truck is your pride and joy.” Well, sure….back in 2007, that truck was my baby. But things change…..and children die. Now, the truck is just a gas guzzling silver hunk of steel that gets me from point A to point B.

Back to the con artist at the used car dealership. When I asked him what my truck was worth, I was shocked when he offered me a LOT more than I thought it was valued at. That got me thinking….if this idiot is willing to pay me that much, how much would a legitimate dealership give me for it. So, I went to a REAL dealership and looked through their used inventory. The good thing about reputable dealerships is that when they get used cars on trade, they usually just keep the ones that won’t “backfire” on them when they are sold….the less desirable ones go to auction…and end up on the lots of those other guys. The dealer ended up having 2 used 2002 cars that were in good shape…..a Honda and a Toyota. I test drove them both and then sat down to negotiate. So, at this point, my thought process was simple. I could take money out of the bank, loan it to Brandyn, and let him buy a used car……or, I could sell my truck, and not have to come up with the cash. So, that was my goal. I looked at the “retail” price the dealer had on the 2 vehicles…and I added a few thousand to the price the con man dealer had offered me for my truck….and then I started to negotiate. My argument was simple. I told the salesman this; “You can’t expect me to pay full asking price on 2 used cars…and then give you my truck at wholesale, so that you can mark it up and make full retail on it too. I don’t have a problem with you making some profit; you’re in business to make money….but you don’t have to double dip on me.” He agreed. So in the end, I got 2 used cars…..without paying a penny. We swapped one set of keys for two others. With Brandyn being a new car owner, he is required to pay a $400 fee to the state for his first tag….that too was part of the deal. We walked out without paying a dime. Through a friend I was able to get him his own insurance policy at a reasonable rate….so once he starts working next week, he’ll be an 18 year old senior in high school, graduating in June, with a job, with a license, with insurance, with a car………..and then in August he’ll be starting college here at a local school.

Honestly, this is probably one of the best-feeling things that I’ve done in the past two years. So, back to Sigmund Freud…..I’m sure he would look at what we’re doing and say that we’re just trying to put Brandyn in place of Zachary. If Zachary were still with us, he would be 17 years old….and we would be buying him a car. I don’t know……I can’t speak to the psychology of this situation….I can only say this, “It feels right to help out Brandyn.” He was always there for us without ever asking for anything. He never complained or added any stress to an already stressful situation…..and when Zachary died…..Brandyn lost more than a friend, he lost a brother.

Yeah, my truck is gone. But I was never going to sell it…to make the money on it, so what has really changed financially for us? I’m driving a less-valuable vehicle, but it gets a LOT more mpg, so I’ll probably save about $100/month…and we gave a well-deserving young man a jump-start on life.

Scott

Saturday, January 8, 2011 7:35 PM CST

So here we are…..7 days away from the anniversary of Zachary’s death…and we get home from a late dinner….and Rebecca grabs the mail before coming inside, and what does she find?........a letter written to Zachary. Our first instinct when we see mail for him these days is that it’s going to be junk mail. So, you can bet that we were surprised when we opened the letter and found a check, for $100.00, written to Mr. Zachary Finestone! Apparently, he was part of a class action law suit that we didn’t know about. Some large drug company was forced to pay consumers for over-charging on a variety of different drugs. We looked through the list, (and it’s a long one,) but there are soooooo many drugs that Zachary took over the years, it’s impossible to narrow it down to just one. Now comes the interesting part……depositing it into the bank. I’m guessing that if I deposit it, no one will notice. BUT, just in case….if you see me on America’s Most Wanted, you’ll know that the authorities are on to me and that I’m on the run.

I wish that I was making this stuff up…..but apparently we are destined to a life of reminders…….not that we want to forget…but, well…..you get the idea.

Scott

Wednesday, December 1, 2010 10:49 AM CST

The following story is not technically mine to tell, however the friends who lived it have apparently “moved on” and don’t seem to be bogged down by the injustice of it all……I…..as most of you already know…….was never any good at letting sleeping dogs lay.

I see no reason to give you their names, but suffice it to say, we are close friends and we see them very regularly……if you know our routine…then you’ll be able to do the math and figure it out.

Our friends live in a “normal” suburban neighborhood in Port St. Lucie, Florida. A few months ago they discovered that one of their vehicles had been broken into and some items were taken. The item in question for this story is a GPS unit. They reported the incident to the local police, who diligently examined the vehicle and even tried to get fingerprint samples. Unfortunately, many people had been in and out of the vehicle and nothing ever came from that lead. The good news in this story is that our friends had the serial number for the GPS unit and had provided it to the police. Apparently, when the police have that information, it is made accessible to the local pawn shops. (So far….so good.) More good news…..the GPS unit showed up at a local pawn shop. (YEAH….CASE SOLVED!)

Not so fast.

The police approached the individual who had sold the unit to the pawn shop and while he admitted selling it to them, his story was that he had purchased it from a 16 or 17 year old who happens to live in our friend’s neighborhood. This same 16/17 year old also happens to have already admitted to breaking into other vehicles in the neighborhood. (Hmmmmmm….the pieces of the puzzle are falling beautifully into place.) The police approached the teenager and questioned him about the GPS unit and the man who fingered him, and his response was this, “I don’t know him….never met him….and I didn’t break into that vehicle or steal that GPS.”

(At this point….one would think that the police would have simply used the tried and true method of interrogation that I grew up with and said to the kid, “Liar, liar pants on fire.”) But no, this is what they told our friends.

“We have no proof that the man stole the GPS unit. We have no proof that the kid stole the GPS unit. The kid is claiming that he doesn’t know the man, and we have no proof that he does…..therefore we cannot prosecute anyone. If you want your GPS unit back…..you need to purchase it from the pawn shop.”

WHAT THE F#%@ IS THAT ALL ABOUT?

YOU HAVE GOT TO BE KIDDING ME?

Our friends spoke with several authorities on the matter and apparently pawn shops, while obligated to report possession of stolen merchandise, are protected by a special law that allows them to keep and sell the merchandise when no one is prosecuted for a crime. So, in theory…….I could go steal some stuff from you, then sell it to a friend…….the friend could then sell it to a pawn shop………when the stuff flags on a report as being stolen and my friend gets approached by the cops…..he just points his finger towards me….and then I claim I don’t know him.

End of story!

I make money……he makes money…..the pawn shop makes money…and you’re screwed!

Sorry about your bad luck.

What kind of screwed up law was written to protect pawn shops and NOT the victims of crime? What’s the sense in requiring a pawn shop to verify that an item is not stolen, and then to just allow them to profit from its sale anyway?

I can see where someone may actually view them as a “victim,” if they purchase something and it turns up being stolen…..but what about the original victim? At the very least the guy who sold it to the pawn shop should be forced to pay them back….and then the item should be returned to its original owner….THEN, it would be up to THAT guy to try and collect from the kid who “doesn’t know him.”

The whole episode sickens me.

Shame on the lawmakers who enacted this nonsense.

Scott

P.S. I am now stepping down off of my soap box.

Saturday, September 25, 2010 7:26 PM CDT

…….and the writing juices stopped flowing…….and Scott looked up to the heavens and asked, “Why don’t I have anything to write about?”….and God said, “Be patient, all in good time.” And Scott waited (not patiently) and after quite a long time (2 or 3 days), Scott looked up to the heavens again and asked, “Why do I still have nothing to write about?”….and God again replied, “Be patient, you will be inspired again.” And so it went, for months and months and months….and more months….and then God smiled upon Scott and gave him a NEW organization to poke fun and write about……

Most of you will probably remember that over a year ago Rebecca completed an online degree in medical transcription. After completing that course, she decided to try medical coding and billing (which she is currently working on.) When I think back to my childhood and early adult years, my most cherished memories do NOT include attending school, going to class, studying, or any other school related activities……so I have steered well clear of the whole “Returning to School” thing.

Then, about a month ago I was having a conversation with my boss about my future and he mentioned that finishing my bachelor’s degree (I have an associate degree) would probably be a good thing. At first, I was against the idea, based solely on my dislike of school from when I was younger….and then the idea started to grow on me. The lure of taking the classes online, at my own pace, seemed like a good idea. I started doing some research into schools and quickly narrowed the field down to two…..the one Rebecca has been using, and another well-known online college. Both schools offer bachelor’s degrees in business, and both are willing to honor most of the credits that I obtained many, many, moons ago. The big difference between the two is the cost. The one that Rebecca is using is quite affordable, while the other would require a student loan (and possibly selling one or both of my kidneys,) and years of debt. Before signing on any dotted lines, I decided to find out exactly how many credits Rebecca’s school would honor from my college.

This is where the fun begins…..

They informed me that I could sign a contract for my first semester, and the cost of evaluating my transcript would be $0.00. If however I wanted to find out how many credits they would honor BEFORE signing on the dotted line, it would cost me $30.00. I mailed them a check and contacted my old college so that a sealed copy of my transcript would be sent to them. They informed that the process would take about two weeks. After two weeks went by, I received an email from the college informing me that I had been given a student ID number and that I could now log onto the school’s online system to access my account. I interpreted this message to mean that my transcript results would be listed somewhere on that account and that I could see how many credits were going to be honored. When I tried to log on, I was given a message that my account was not currently active and that I needed to contact student services. Now, before I go any further, it’s probably relevant to the story to mention that when I first spoke to student services several weeks ago, I gave them all of my contact information, (including my email address) and explained that my wife and I both use the same email. They told me that the college has many couples enrolled and that it wouldn’t be a problem. I also had a lengthy conversation about the degree that I was interested in (Bachelor’s in Business), and what I was looking to accomplish. (Back to live action.)

I called student services and explained my dilemma to the phone representative. She looked into my account and said that it had been set up incorrectly and that she would fix it. She also told me that the evaluation on my previous credits hadn’t taken place yet. Right before hanging up with her I asked a seemingly innocent question about the timing on semesters and how quickly I might be able to complete them……her response was, “You don’t really have semesters with the medical transcriptionist program that you’re interested in…….you just go from one class to another.” Hmmm. (There’s trouble in River City……and that starts with ‘T’ which rhymes with ‘P’ and that stands for………”peanut brained moron.”) I calmly corrected her and explained that she must be looking at my wife’s account, because that was the class that Rebecca had already completed. SHE calmly corrected me and said that, “NO, I am looking at YOUR account, and that is what they entered here when they set it up.” I, (again calmly) explained that I was interested in the bachelor’s of business and that my wife had taken that medical course. She apologized and said, “OK, they must have set this up wrong. Let me fix it. Now, you want to be in the medical coding and billing…..right?” Hmmmmm. “Do have an actual college degree, or are you just employed there because you know how to operate a telephone?” OK….maybe I didn’t actually say that….but you’ve got to admit……you’d have been thinking those same thoughts.

I corrected her again, and she promised to fix the issue. She explained that it would take another week for me to get my transcript results. She also explained that I would receive a NEW student ID number and that I would be able to access an account once I got that email.

I waited (not patiently) for the week and sure enough I received an email with a brand NEW ID number. I logged on and guess what I found? “Your account is past due, you are now late on $19.00.” Hmmmm. (Do they somehow have the ability to see into the future….and they KNOW that I am a deadbeat and that I will, at some point, be late on a payment……so they are taking the extreme measure of making me late NOW, before I actually sign up for classes, so that I am actually always AHEAD?) Probably not……that would take some forethought.

I called student services and once again I was told that my account was set up incorrectly. The representative said that my $30.00 check had been received, but instead of applying those funds towards my transcript evaluation, they had used them to start paying for the education that I hadn’t purchased yet. She apologized yet again and said that she would make the necessary corrections. Unfortunately, the clock on getting my transcript evaluated was reset, so now I have to wait another two weeks before I’ll know how many credits they will honor.

There is good news to report though……Rebecca is still working on her medical coding books, and yesterday she took one of her tests……….when you complete exams online, they email you with the results…….we got the email last night…
“Dear Scott….congratulations on your score of 92 on your most recent exam!”

So I guess I not only am signed up as a student in a program that I haven’t actually signed up for yet…but I’m already getting great grades on tests that I haven’t taken for classes that I’ve never studied for……….college is fun!

I must be smarter than I had originally thought I was!

Scott

Sunday, August 29, 2010 5:35 PM CDT

If you’ve given up on me ever posting again….I can’t really blame you. It’s been over a month since I’ve taken the time to jot down some thoughts for Caringbridge.

I guess I’ll start off with telling you all about the two new “additions” to our home. (One isn’t really an addition, but it is something new.) (And NO, we don’t have any adopted babies, dogs or cats.)

I didn’t really tell you too much about our family reunion when I wrote last, but one of the things that we saw while in Tennessee was the new Apple I-Pad. My older brother brought his with him, and I’ve got to admit, the thing is pretty cool. (Disclaimer: I do NOT own any Apple stock. I am not related to or know of anyone who works at Apple.) I’m convinced that the I-Pad is something that every household should have. What a great device. Lightweight, easy to use, versatile, etc. As soon as we got home from that trip, I started plotting on how I could afford one. It turns out, that I could NOT afford one….so I did the only logical thing….I stole one! (Just kidding.) I started looking around the house and realized that we had a lot of stuff that we weren’t using….that I could sell. I did some research and found a reputable place for one such collection. We drove down to Palm Beach on a Saturday….they paid cash…..we left there and went directly to the Apple store….and the rest is history. We use this thing every day. Rebecca loves it. When you are in bed, it is much easier to use than a heavy laptop……and in case you hadn’t already heard…there are about 50 billion apps that are available to download…..so you never run out of things to play/do.

(Enough of my Apple commercial.) The second thing that we got was a custom paint job for the motorcycle. Once again, we couldn’t afford the airbrush artwork that I wanted….but, once again…..we sold some stuff and…….well…you get the idea. I wanted to get something that was different, and would make the bike stand out when we go to events. I chose dragons. There are two dragons, one on each side of the gas tank….their tails come up and wrap around the ying/yang symbol on top. It looks pretty cool. I am working on getting some photos so that I can post them for you to see…..because the tank is black, I get a lot of reflective light that is making the photo taking process challenging. The dragons have amazing detail…and they are Japanese style dragons….which Zachary would have loved.

In other news….Rebecca’s hand has healed well….she has one more follow-up visit with the doctor, but the hand looks good…so we are optimistic that she will be able to put this behind her. On the work front, Rebecca got promoted to the Apron’s position at Publix. If you are not familiar with this position, she cooks a recipe that lasts for the entire week…and she gives out samples…with the hope that customers will like what she cooks, and then go buy the ingredients to try it for themselves. So far, it has been going really well. Everyone seems to like the recipes, and the departments that house the ingredients keep running out….so she must be doing something right. Work for me is pretty much the same. I’ve been keeping busy, working on learning new things so I can work my way up the corporate ladder. I’m also contemplating taking some online classes so that I can get my Bachelor’s degree. I’m waiting now for one online school to evaluate my old credits from college to see how many will transfer.

In sadder news, we lost another cancer child last week. He was actually an adult when he died (22), but we first met him when he was about 14 years old. His diagnosis came right after Zachary relapsed, so we were up on the cancer floor with him for most of that year. One of our favorite photos is of Zachary, Kyle and Robert, playing cards at the end of the hallway, with their IV poles. Sadly, all three are now gone. The service was very difficult….for all of the obvious reasons. There were photos of Zachary in Kyle’s photo remembrance, his doctors and nurses were there……our close friends from the cancer community…..need I say more. If you invested in Kleenex prior to that service, then you probably made a ton of money. I’ve written so many times about how much cancer sucks and how horrific it is to lose another warrior….I just don’t know what else I can say about this. This family was there for us when Zachary died…they came to the service. Now Kyle is gone….and we were there for them. It is a sad cycle that has been repeated too many times to remember.

I wish had happier things to write about….but this is the life that chose us. There is no escaping it……never was…never will be.

One of my former fishing tackle customers whose shop is near my CVS store called me a few weeks ago to let me know about something pretty cool. He has been working with local officials to have an artificial reef placed near here that would be named “Childhood Cancer Warriors Memorial Reef.” They held a fundraiser yesterday and it looks like they have enough money to make this happen. They are dedicating the reef in the memory of Zachary and Kyle (young Kyle who died about 1 month after Zachary last year.) Rebecca had to work yesterday so I attended after I got out of work. I actually got up and said a few words to the crowd….without breaking down and sobbing……they’re doing a really nice thing by making this happen. Once the reef gets dropped into the ocean, it will be added to the charts for all fishermen and divers to enjoy.

I’ll try to do a better job at keeping up with this page, especially when there are more developments with the reef…..and as soon as I have adequate photos of the artwork on the bike…I’ll post them here and on Facebook.

Scott

Sunday, July 4, 2010 10:55 AM CDT

We’re back from another family reunion and while it is always great to see my family, the pain of losing Zachary is so raw and real that I am beginning to question how much pain-free normalcy we will ever get to enjoy in life.

This is the first time that I have checked in on his web page in a while….it was nice reading the guest book entries and seeing that folks out there still care enough to check in on us and leave messages. I wish that I had the energy to post updates more often, I miss writing. I have been itching at taking on another book project but I have yet to find a subject or topic that motivates me enough to put the time and energy into it. I will only do it if I can find something that I feel I can do a good job with…..no half-hearted attempts for me.

Father’s Day came and went….and before long there will be another holiday, or birthday to spread open the wounds that we live with each and every day. The bad dreams (nightmares) are starting to blend together…..I actually fell asleep on both flights up to Tennessee and had bad dreams on them…….it’s maddening. The second flight was only 40 minutes….and yet I still found a way to wake up miserable.

Rebecca had her follow-up with her hand surgeon about 4 days before we left for vacation, and he ordered her to keep it dry, so we purchased one of those rubber sleeves to protect it while swimming and showering. We see the surgeon again on Tuesday, so hopefully he’ll have good news for us.

Toby missed us….I think….it’s hard to tell with cats……he pretended like we were in his way when we got home….and then after about 20 minutes he was all over us……and he has not left our side much since then….so I’ll take that as a sign that he missed us.
Scott

Sunday, June 6, 2010 12:20 AM CDT

Every time I get the urge to write an update, I can’t seem to get past the sadness that seems to engulf a large portion of my life. It has now been 1 year, 4 months and 19 days since Zachary passed away. There really isn’t anywhere in the world to hide from the reality that we are faced with, he is gone. We just got back from a 7-day cruise that we spent in the western Caribbean with friends, and while we did enjoy ourselves, it has become increasingly more difficult to find solace from the demons that haunt us.

Zachary is gone.

Work goes on.

Life goes on.

We are still putting one foot in front of the other, each and every day of the week, fighting the “good” fight, and forging on without him in our lives. It sucks. It is still a surreal fact that not infrequently ambushes us with a flood of memories that interrupt our lives and force us to relive the worst time of our lives.

I recognize that you can’t just magically eliminate the bad memories and keep the good ones….it doesn’t work that way. That knowledge doesn’t mitigate the depth or severity of the pain that the memories can inflict upon us.

Someone once said that “Time heals all wounds.” I cannot envision an age to which I could live where these wounds will have healed……but I have been wrong before….so you never know.

Scott

Thursday, April 22, 2010 10:11 AM CDT

Dear God,

(Wow, what an opening. I suppose an explanation is in order, considering that A). I haven’t updated in a while…..and B). I am addressing a letter to God! Well, I suppose it all started when some very close friends and family members suggested to me that I am not dealing with Zachary’s death in the most productive or healthy fashion. I’m guessing they came to that conclusion because of my never-ending nightmares and sleepless nights. For the record, I am seeing a counselor….but again, my friends and family believe that I have not opened up enough to her regarding my feelings….etc. So, why the letter to God? The other advice that I have been bombarded with is that I need to start writing again. I have tried to explain to everyone that my writing process can’t just be turned on like a light switch, whenever someone commands me to do so…..but alas, I have been told that I am wrong….and they are right. You can’t argue with sound logic like that I suppose. So, here I am, writing a letter to God. There is of course no logic to actually writing a letter to God. By writing a letter, a person is admitting on some level that they believe in a higher being or entity (I do). A person maintaining that belief would surely ALSO believe that the higher being or entity would possess the ability to know the thoughts of that person, thus removing the necessity for writing an actual letter. I of course have other issues bouncing around in my tiny brain, so here I am……writing a letter a God.)

I take it you have noticed that I am not sleeping so well, and that I am having a very difficult time dealing (or not dealing) with the loss of my son Zachary. It has been 1 year, 3 months and 7 days since he died (but who’s counting?), and I feel no change or easing of my grief. I do not blame you for Zachary’s death, even though I have had countless people say to me, “It was an act of God” or “God had other plans for Zachary.” As that famous Rabbi wrote in his book, “Bad things sometimes happen to good people.” Zachary was good people! He was an amazing son who taught me more about how to live than I had learned in the 31 years before I met him. He was courageous, brave, strong, caring, loving, thoughtful and a very special human being.

To this day, I have still moments where I forget he is gone, and expect him to walk out of his room for dinner, or to call me for help with something. I have caught myself countless times about to call out his name, only to have that instant and painful flash reminding me that he is gone. The friends/family who I referred to earlier have inferred that I am not recovering as well as I could be, in part because I have not taken on enough projects/causes in Zachary’s name. They may be right…..most of the folks giving the advice are speaking from experience, so who am I to tell them they are wrong?

Then again….maybe they are wrong…..for me. Maybe I am dealing with this the only way I know how. Maybe I am destined to wrestle with my demons for many years more than others have. Maybe my grief is an act of God (you), or maybe you have other plans for me. I admit I am in a bit of a funk….but I blame no one.

In closing, I obviously do not expect a return letter from you. That, in and of itself, would create a global chaos that would probably end with people camped out on my front lawn waiting for me to heal them or convey some prophetic wisdom upon them….two things that I am not prepared or qualified to do.

Sincerely,

Scott

Saturday, March 27, 2010 8:26 PM CDT

Nightmares aside….living life without Zachary is a daily struggle.

Last night was our local American Cancer Society Relay for Life at the high school Zachary briefly attended. Zachary’s AFJROTC class dedicated their booth to Zachary’s memory and Rebecca and I brought a picture and some of his memorabilia for them to display in their booth. We saw many of his friends and some of our old friends as well. The most difficult moment for us was when we decided to walk around the track to find his luminary bag. Seeing his “In Memory of Zachary Finestone” bag was very difficult. The other tough thing for me was watching the survivors take the first lap. Every year when we attended the relay, Zachary was always at the front of the pack, leading the survivors on that first lap. Last year we were out of town for the relay, so this was our first one without him.

The highlight of our night last night was a small presentation that the ROTC gang did for us. One of the teachers who is retired from the Air Force had a friend of his send us something very special. An American flag folded and in a case with a framed certificate certifying that the flag was flown in a combat mission in Iraq in May of last year. The certificate tells which gun ship flew the mission and it is signed by an officer. The school also received a flag with a certificate that will be on display in Zachary’s memory for future generations to see and appreciate. We are VERY lucky to have an amazing group of people who are helping us to ensure that Zachary’s memory will live on at that school and in this community.

Work is keeping both of us pretty busy. Rebecca is enjoying her work in the bakery and I am busy running my store and training/learning for future advancement.

Our cats are an enigma wrapped in a puzzle surrounded by a mystery. Toby used to be the wild one, capable of keeping us up all night with his antics. Now he is the older, wiser cat who is mildly annoyed when Socks chases his tail, or pounces from a hiding a place. Toby seems to tolerate Socks…but at times they are very affectionate with each other….cleaning each other’s fur and sleeping next to each other.

Next up in our endless pursuit of challenging our emotional stability will be the St. Lucie Relay for Life where we will join our friends the Wahl’s at their booth in memory of their son Kyle who passed away about a month after Zachary.

Misery loves company!

Scott

Monday, February 22, 2010 8:04 AM CST

Nightmares are endless.

Saturday, February 6, 2010 5:01 PM CST

A taste of my world….for you to “enjoy.”

I’m was hanging out with my good friend Eric, and we were somewhere I can’t quite remember, maybe Pittsburgh where we grew up…..it seemed like it was my old house up there….I’m not sure. We were getting ready to go somewhere, I can’t determine where, and he called out to his son Lars who was playing in the back yard……I immediately yelled out “ZACHARY”, (thinking he too was in the back yard) so we wouldn’t leave him behind. I came running into the kitchen where Eric and some of my family were hanging out, getting ready to leave….and that’s when they reminded me that Zachary had been dead for over a year. I scream and start sobbing uncontrollably.

That was last night’s dream (night terror). Every night I get to have one of these. Every single night. The details are usually fuzzy when I get jolted awake, but the clarity of having just experienced a nightmare is inescapable.

Other than Rebecca, the only friend who I’ve shared this with lately is still facing his own demons, having lost his son shortly after Zachary passed away. What do you say to someone in this position? What can you possibly say that will make things right? There is of course nothing to say.

I suppose I could try to find Michael Jackson’s doctor and see if he has any spare Propofol that I could borrow. (Nothing like a good twilight sleep.) (Just kidding….he’s on his way to jail……SURELY he’s already dumped any meds that he had.)

Well, there you have it….not much of an update….certainly not what some of you were probably hoping for…..but it is what it is.

Scott

Wednesday, January 20, 2010 4:46 PM CST

Wow, has it been 3 weeks since I last updated? I guess so.

I had planned on posting an update around the anniversary of Zachary’s passing…but I just couldn’t find the words. I’m don’t usually get too wrapped up in dates, but this one was truly tortuous. We both had a very difficult time all of last week.

I had a meeting in Orlando on Thursday, so Rebecca came up with me and she spent the day shopping while I was in my meeting. We had a nice dinner that night, and then on Friday, our good friends Chris, Sasha and their daughter Alyssa joined us for breakfast and a day at Sea World. The park provided somewhat of a distraction, but in the end…there is of course no escaping the reality that we are living.

Since my last update we lost complete and total control over any logic or reasoning that we ever possessed and adopted another cat. One of my co-workers rescues cats, and he got one that was pregnant. She had three kittens, and after they were old enough (and fixed), we adopted one.

Toby was quite hesitant around the kitten at first, but now they are best friends. I think he is getting much more exercise with this kitten. The good news (NOT) is that they rest all day so that they can run around and play all night….robbing us of whatever morsels of sleep we had managed to find when it was just Toby keeping us up. The kitten has great coloring, with white feet. So, Rebecca named him Socrates. (Socks for short.) Socrates was Zachary’s nickname when he visited the air force base in Washington D.C. (They felt he was very philosophical.)

I think we’ll adopt a rooster next….just to make sure we’re up at the crack of dawn every day.

I’m still learning Facebook, so bear with me on that front.

Scott

Wednesday, December 30, 2009 9:30 PM CST

With the exception of the journal entry that I wrote immediately following Zachary’s death, this may be the most painful one yet.

I have crossed over to the dark side….again….and created a facebook page. You may recall that over a year ago, I created one only so that I could try to contact a man with the same name as me who lives in Canada. While setting that account up, I accidentally sent a “friend request” to our entire email address book……..pretty much everyone accepted us….except the guy in Canada. I stopped using the page almost as soon as I set it up…..so Rebecca eventually took it over and is still using it today.

We were out at dinner with our close friends the Wahl’s, and they suggested that I create my own page, so that I could write on there about life…..moving forward from our tragedy. They also suggested that I keep this page for writing about Zachary thoughts or life occurrences that strike me as interesting enough to post on here.

I don’t plan on checking my facebook page every two seconds, so don’t go there expecting that….but I am somewhat excited at the prospect of “meeting” more of you lurkers and learning more about you through facebook.

SO, if you use facebook, and want to come out of lurkerdom, do a search for Scott Finestone (in Jensen Beach, Florida, NOT Canada) and I will accept you as a friend…..and who knows….maybe I’ll start connecting more to the outside world.

Scott

P.S. Seeing as we’ve had over 1,000,000 hits on here in 7 years, I’m hoping that at least a FEW of you are on facebook and will contact me!

Friday, December 25, 2009 9:23 AM CST

Happy Holidays to everyone!

Sorry for the lack of updates. Work has been keeping us busy, and to be perfectly honest....this time of year sucks! I never understood why the holidays were particularly hard....until now.

I don't know what the world record is, but I'm up to 5 or 6 months straight of having Zachary nightmares....so sleep is an issue. I think Rebecca is more tortured during the daytime. (We like to cover ALL of the bases here at the Finestone house.)

We are quickly approaching the one year anniversary of his passing.......a day that neither of us is looking forward to. We sent out holiday letters to family and friends...if for some reason you didn't get one (regular mail or email), then you can read it here...I've included it in this entry.

Love to all!

Scott & Rebecca

Dear Family and Friends, November 30, 2009

It has been almost 11 months since Zachary lost his 9-year battle with cancer and passed away. If that news comes as a shock to you, then we apologize that you didn’t find out sooner. There were over 500 people at the funeral, and I obviously wrote about it on our Caringbridge web page, but to this day, we still hear from friends who did not know that Zachary died. There is no right or wrong to that process, we have done the best that we could given the circumstances.
With the holidays upon us, the great debate here in Florida has been whether or not to send out holiday cards, a letter, or even acknowledge the holidays this year. After much discussion, we came to the conclusion that NOT acknowledging the holidays will NOT bring Zachary back to us. So, here we are, 11 months after Zachary’s funeral, trying to find our way in life without him here to be our driving force.
Work for me has been good. I have been with CVS for a little over a year now, and they are treating me very well. I manage a busy 24-hour store in Port St. Lucie, about 15 minutes from home, and I am in a program that prepares me for a possible promotion to the District Manager level. Rebecca recently was hired by Publix grocery, and she is doing well in their bakery department. She is learning new things and is already a valued member of that team.
In our spare time, we enjoy riding the motorcycle with friends. I started riding shortly after Zachary passed away, and after completing the mandatory safety course, I purchased my first bike, a Honda Shadow 750. I never imagined that I would need anything bigger than that, but after 4 months or so I realized that a larger bike was in my future. I found an amazing deal on a new 2007 Honda VTX 1800 and I made the trade. This newer bike is much heavier, more stable, more powerful, and much more fun to ride. We have a great group of friends who we ride with regularly, and we are even considering taking the bike on a trailer up to Tennessee for next summer’s family reunion where we could then do some fun day trips. Aside from the motorcycle, we still enjoy going to the movies and watching hockey and football on TV. We also still host a poker night for many of Zachary’s friends who have stayed in touch with us. The other “big” news in our lives is the cat we adopted on March 1st, (Zachary’s birthday.) Just to keep things interesting around here, we found a truly psychotic cat that sleeps during the day, and goes berserk at night. One of his favorite pastimes is attacking my feet through the blankets. He of course waits until I am asleep and my restless leg syndrome kicks in…..then temptation gets the better of him and he can’t help himself…..he pounces.
We sincerely hope that you and your family have a healthy and prosperous holiday season and New Year. Our plan is to forge on and work our way through this difficult process. If you were unable to attend Zachary’s service back in January, or if you attended and didn’t realize it, we had a DVD made that is a slide show set to music with some wonderful photos of Zachary growing up. We have many (over 50) of those left, so if you would like one, let us know and we will mail it to you. There is of course no charge, we have many family and friends who wanted to have something to remember Zachary by so we had several copies made. In lieu of any holiday gifts to us, please make donations to the Zachary Finestone Scholarship. You can mail those directly to his high school: Jensen Beach High School, 2875 NW Goldenrod Road, Jensen Beach, FL 34957, or you can mail it to us and we will deliver it to the high school. Shortly after Zachary’s passing, we created the scholarship and funded it for the first two years with donations that were given to us. So, last year we were able to give out the first $500.00 scholarship, and in May, we will give out the second. Any student who has at least one semester of ROTC and is graduating with a post-graduation plan, (College, military enrollment) is eligible to submit an essay for a chance at receiving this scholarship. The high school has done an amazing job in helping us to keep Zachary’s memory alive for future classes of students with this scholarship, and Rebecca and I are very grateful for that.

Once again, have a wonderful holiday season with your families, hug your children tightly, and cherish your time with family and friends.

Love,

Scott & Rebecca

Saturday, November 14, 2009 7:40 PM CST

Tomorrow marks ten months to the day since Zachary passed away. Why are calendar milestones so important? They’re really not……every day sucks as much as the previous one does, so noticing that the 15th of any given month is approaching really shouldn’t matter too much.

I can remember being a teenager and “falling in love” with one girl or another from my school…….and thinking the world was going to end because the relationship ended, or because she wouldn’t give me the time of day. The empty pit in your stomach, at that age, is all encompassing and seemingly irreversible.

What I wouldn’t give to ONLY have that feeling in my stomach right now, to replace the emptiness that haunts my nights and tortures my days. I never could have imagined missing someone so much.

There are good memories, but there are also daily flashbacks to Zachary’s final weeks, days and minutes that weigh down upon me with a crushing force that feels like it is going to take my breath away.

The conversation at Palms West with the doctors and nurses regarding the decision to bring him home on hospice care.

The final ride home in the ambulance.

Setting up his room for the hospital bed.

Watching him deteriorate, slowly over the weeks and days.

Seeing him slip away from us, and not being able to stop it.

All of it is so vivid and real and horrific, and it stays with me always.

I probably don’t cry enough while I’m awake, (Lord knows I cry in my sleep,) but I am crying now, as I try to accurately convey to all of you just how hard life is without Zachary.

For those of you who have lived through this nightmare with your child, I am in awe of your ability to function and wake up in the morning.

I appreciate all of you who have stuck with this web page and still encourage me to write my thoughts on occasion. I will continue to make an effort to keep everyone informed as to how we are doing. Rebecca started her new job last week. She is an assistant in the bakery at a new Publix that opened up today. She loves cooking and cake decorating, so hopefully this will be a good distraction for her.

Riding the motorcycle is still a good distraction, and I make an effort to get out and ride at least once a week.

Toby the insomniac cat is going to have to be drugged so that I can make an attempt to sleep through the night.

That’s all that I have for you today……ten months……cancer sucks.

Scott

Thursday, October 29, 2009 9:10 AM CDT

Dear Northerners (Snowbirds),

Thank you for returning to sunny south Florida for the winter again this year. We rely on your presence to help support our economy. While you are here, I would like to offer you some free advice to assist you in assimilating into our communities.

1). You are now in Florida. You are on longer in New York, Michigan, Canada, or wherever else you came from…..so it is no longer necessary to drive like a complete maniac. You do NOT need to cut other drivers off. You absolutely CAN use your turn signal to indicate that you are changing lanes. When you approach an intersection where the traffic light is red, and you are making a right turn, YES, we do allow right turns on red here in Florida….however, you ARE required to stop first and yield to traffic from your left that has the green light. Also on that note, a right turn on red is a privilege, NOT a requirement….so if you approach a red light to make a right turn, and you are the second or third car in line, do NOT blast your horn when the front car doesn’t go through the red light….they are NOT required to do so. If you are traveling on US1, (our major north/south road which happens to have at least 3 lanes in most areas) try NOT to cross all of the lanes in one maneuver if you realize that your destination is coming up quickly. This is the south, and while it may not be the DEEP south, like Georgia or South Carolina where they take things slow and easy, we do move at a different pace than say…….NYC. So, if you realize your turn is coming up quicker than you anticipated, you can go PAST it, safely make your way over to the far lane, and then turn around to get to your destination. While I’m on the subject of driving…..I happen to be a motorcycle rider now, so I would like to add that, MOTORCYCLES ARE CARS TOO! (Not really….buy you get my drift.) Florida has not yet banned the use of cell phones while driving, but this doesn’t mean that you should completely ignore the road while you chat away about Desperate Housewives or Kate and her 8 children.

2). While we’re on the subject of cell phone usage, remember, this is NOT the north, where being rude is expected. If you are in a public place, please try to keep your voice down when using your cell phone. Restaurants are NOT the place to be chatting away on your phones. If you are shopping, stay out of the register line until you have completed your phone call. Cashiers are trying to help customers quickly and efficiently, and that becomes very difficult when they cannot ask you for little things, like MONEY for your purchase, if you are busy yacking away on your phone.

3). While I’m SURE that everything you do “up north” is done better than down here, continually telling us that fact does NOTHING to garner any sympathy towards you or your kind.

4). Please remember that you are a visitor to our community. We realize that “up north” you throw your trash on the ground and litter anywhere you like, but down here we like to keep our neighborhoods clean and well kept. We recognize that it can be a HUGE inconvenience to have to walk the extra 2 feet to a trash can to properly dispose of your garbage, but please take those extra valuable 3 seconds of your time and do it.

(Never write a journal update when you’re in a grouchy mood…..you end up attacking everyone.)

Why am I in a grouchy mood? Well…..I keep having horrific nightmares and bad dreams….all about losing Zachary. Last night was no different. I was sobbing in my dream and woke up miserable. I am now into my third or fourth consecutive month of bad dreams……no days off……..yeah…it sucks.

Work is still going well. It remains challenging, which is a good distraction for me. Rebecca is in the process of changing jobs…..and she is still working on her medical coding studies. Toby is still a cat…….and a horrible dog. He still refuses to come when I call him. (I’m scrapping my plans to teach him to sit and roll over.)

If you are wondering why I all of a sudden decided to write an update…when I haven’t done so in quite some time….well, it was a combination of the ongoing bad dreams……and then yesterday I learned of the death of another young cancer patient. We didn’t know her too well, but we did spend many hours with her and her mother in the transfusion room at Palms West. I had heard that she wasn’t doing well, and then yesterday I got word that she had died.

There have been several children who have died in the months since Zachary and Kyle passed away….but for some reason this one triggered a fair bit of emotion in me. I guessed it just pissed me off!

9.5 months after Zachary’s passing, the world is stilling spinning on its axis, the seasons still change, and life for the most part still goes on. Most importantly though…….it still sucks each and every day. When I signed the guest book this morning for the family who just lost their little girl, I couldn’t write anything other than, “We are sorry for your loss” and “We will keep you in our thoughts and prayers.”

I know that as an “experienced” parent of having suffered a loss that I SHOULD have more profound words to convey, but I just don’t. I remember reading all of the comments, “He’s in a better place.” “At least he is no longer suffering.” “I know what it’s like; I lost my grandmother last year.” “I know what it’s like; we lost our dog 3 months ago.” “Time will heal your wounds.” “Take it one day at a time.” “God has a plan for you.”

I recognize that all of the comments that are sent to parents in this position are meant with a kind heart and NOT intended to be hurtful, but I just couldn’t see myself writing anything like to another parent when I know that it did little or nothing to ease the pain of losing Zachary. As parents in this position…..there is going to be suffering. There is going to be horrific pain. Each and every parent’s journey through this hell will be unique. It’s not my job to tell those parents any of that. They are living it. It’s also not my job to try and minimize their grief with a sentence or two about how I know what they are going through. I don’t. I know what I went through. I wish with all of my being that I could stop other families from having to experience any of this…..but…..I misplaced my magic wand.

Cancer Sucks. Just because you haven’t seen that written here in quite some time doesn’t mean that it isn’t so. Trust me…..it still sucks.

Scott

Tuesday, September 15, 2009 5:15 PM CDT

The following story “greeted” me Monday morning in our local newspaper.

Grieving the death of a child is a process with no distinct finish line.

Jane Doe (real name changed to protect anonymity) knows firsthand what it feels like to lose a child. Her 18-year-old daughter, enjoying the waning weeks before high school graduation, was thrown from her boyfriend’s motorcycle after a deer jumped in their way.
She sought the help of The Compassionate Friends soon after. It’s a large network of survivors established specifically for those struggling with the deaths of children, grandchildren and siblings. Doe is a chapter director for the organization and offers this advice:

1). Grief is not an event. It is a process. It does not have a distinct finish line.

2). Your grief journey will be guided by many things besides the relationship you had with the child who died. It will be influenced by your past life experiences (including previous losses), your religious beliefs, your socio-economic status, your health, the availability of a support network and, in many cases, the cause of the death.

3). People want you to be “over it” way sooner than you can
ever imagine. What they don’t realize is that we will never be the same people we were before our child died.

4). Grief is not a predictable journey. One day we may feel somewhat stronger, the next day we may crash and burn.

5). It is important to remember that as we grieve, we must also mourn the death of our child. Grief is on the inside – what we are feeling. Mourning is “grief gone public.”

6). We have a great need to tell and retell our story for longer than many people are willing to listen.

7). Pain is part of the grief process and cannot be ignored or “gotten around” if we are to heal. Remember that letting go of the pain does not mean letting go of the love you had for your child.

8). At some point each of us must make a conscious decision to heal. We must decide whether we want to become bitter or better.

The Associated Press

There you have it….everything you wanted (or didn’t want) to know about the aftermath of losing a child.

Perhaps we should break down these thoughts individually and examine them. Let’s start at the beginning:

1). Well, #1 is pretty self-explanatory…if you have been expecting us to just “get over it.”……well……good luck with that.

2). It’s tough to argue with #2…..we’ve only lost the one child, and we only come from one background each…..so how would we compare it……we can’t.

3). There are definitely people out there who are expecting us to be “over it” by now. Nothing has been said outright, but you get a sense by how people act around you…..what they say……and what they don’t say.

4). There are definitely days where you feel like you’ve jumped onto a roller-coaster.

5). I don’t know about this one….I haven’t spent too much time grieving in public……..I cry enough in private…….besides…how many tears can one person possible produce?

6). I’m skeptical of this one also. I have told several people our story, but it seems like most of them have asked for details or information and it never felt like I was “puking” out the story just to hear myself tell it all over again.

7). I cannot let go of the pain yet….so I don’t know what to say about this one.

8). Bitter, bitter, bitter, bitter………(that was me looking in a mirror and making a self-examination.) “Become better.” It sure sounds great over being bitter……..but the old saying, “easier said than done” comes to mind. (I liken this one to a Rubik’s Cube that has 13,208 sides, with 629 different colors, and you’re wearing a blindfold and have our hands tied behind your back. Now solve it!)

All in all……it was depressing just seeing an article about losing a child. It’s not as if I had forgotten about it, and the article suddenly reminded me or anything………but nothing seems to help right now….it just sucks.

It’s been 8 months today since Zachary died……8 months. 8 months. 8 months. The pain is the same. The sadness is the same.

We miss him more than ever.

Scott

Saturday, September 5, 2009 7:38 PM CDT

It’s not that I don’t have anything to write about anymore, it’s just that I can’t bring myself to update without traveling down that depressing road of full disclosure that has always been my trademark.

A little over a month has gone by without an update. Time flies when you’re having nightmares every night. Yes….the bad dreams are back.

I truly don’t remember whether or not I wrote about my 1st (and only so far) encounter with the hospice therapist….but she is convinced that my nightmares are the result of me not dealing with Zachary’s loss while I’m awake. In other words…..my brain needs to process a variety of things surrounding his death, and by not talking about things while I’m awake….my brain does the next “best” thing….it processes things while I’m sleeping.

I had about a week or two where the nightmares stopped, and then about 2 weeks ago…they started up again. It’s gotten to the point where now, I don’t really remember the details when I wake up, but I always wake up remembering that I’ve dreamt about Zachary dying again…….I’m guessing that the therapist would say, “Not only have you suppressed your feelings during your waking hours, you’ve also managed to suppress them while you dream. Now you are pushing those thoughts even deeper into you the recesses of your mind.”

(The good news is that eventually, my brain will be so full of these horrific thoughts that it will just explode, and I won’t have to worry about it anymore…..sure it will be messy, but you can’t have your sanity and eat it too.) (Or something like that.)

For those of you who follow Rebecca’s Facebook page, you have been treated to some real drama over the past several days. Apparently, if I had been following her page, I would have known what was going on.

Rebecca had a doctor’s checkup about a week ago…..while there, she told her doctor about some issues that she has been having. Well, apparently the doctor suggested that is sounded like Rebecca might be pregnant. (This was on a Thursday.) The doctor ordered some tests, including an ultrasound. So, after going through the weekend WITHOUT mentioning any of this to me….Rebecca gets to her OTHER doctor’s appointment, her lupus doctor. While there, she informs them of the possibility that she may be pregnant. That doctor of course FREAKS out…..because of the medicines that she is on. Before leaving that doctor’s office, Rebecca was able to get a hold of her first doctor’s office and obtain the results from the tests…..negative. Her lupus doctor was relieved, but informed Rebecca that she is smack dab in the middle of a flare up. He upped her steroids, so she is dealing with that demon now.

I was not only kept in the dark throughout this entire ordeal, but when Rebecca told me all of this, she managed to drag out the story, with every little detail……..every little detail that is, with the exception of the test results……until the very end. (My blood pressure needs to skyrocket every once-in-awhile, just to let me know that I’m still alive.)

Work continues to keep me busy….especially now that we are getting ready to enter the busy season. Rebecca is working on her medical billing/coding diploma; she will probably be done in a few months.

Toby the psychotic cat is still psychotic. He sleeps during the day; so that he can torment us at night…….such is the life of a cat.

We’re still enjoying the motorcycle….weather permitting. I got caught today in a mild rain shower……..but thankfully my skills have improved to where I can handle those situations when they arise.

Scott

Saturday, August 1, 2009 9:53 AM CDT

***New Photo in album***
(Rebecca and my mom found a woman who makes quilts. They took Zachary's t-shirts, bandanas, shorts, swim trunks, and boxers and she made the amazing quilt that is shown in the photo album. The other side was one of Zachary's favorite comforters. She was able to take the dragon theme from that side and create a dragon border around the clothing.)

Rebecca is recovering nicely from her surgery to remove the cyst that was bothering her. I don’t think that there will be much of a scar, and for the record, ANYONE who notices the surgery site will have to answer to me and explain why they are looking at Rebecca’s lower buttocks!

I on the other hand will be permanently scarred from my recent colonoscopy experience. Don’t get me wrong, the procedure itself when great, but the prep though is for the birds.

Four years ago when I had my first one, they made me drink the 389 gallon prep that takes 14 ½ weeks of drinking 16oz every 32 seconds. (That may have been somewhat of an exaggeration, but it seemed like that.) I remember NOT being able to finish the entire prep four years, ago, but the amount I did manage to drink more than adequately did its job.

This time, I informed the doctor that I had problems with the previous prep, so they gave me Moviprep, the latest and greatest thing on the market for getting prepared for your colonoscopy. The good news with Moviprep is that you only have to drink 2 liters of the stuff, and it can be mixed with lemonade or another clear, flavored powder. You get 1 hour to drink the first liter, and then you can wait about 8 hours, and then drink the second one. The bad news is that no matter what you mix with this stuff, it is undrinkable. I gagged my way through about 80f the first prep, and never made it past one sip of the second one. It was horrendous. And while we’re talking about this crap, who in their right mind would name it “Moviprep?” I wouldn’t be surprised if some uninformed soul out there took this stuff and then went to see a movie. I can promise you that nothing good would come of that. In fact, I can envision only two distinct possibilities. 1). They realize that they need a restroom, and during the mad dash to get into a stall, they ALMOST make it onto the toilet with their pants down……almost. 2). They never even get the chance to exit their seat in the theater, and the owners end up having to replace 2 or 3 rows of seats from the explosion that follows. Either way, it would NOT be a pretty scene.

I’m guessing that the intent here was to say, that the “Moviprep” will get you “MOVING.” DUH! Was there any doubt as to the outcome of drinking large quantities of drain cleaner? I was passing gas just from reading the label while mixing this stuff.

The colonoscopy went OK. I did have a small benign polyp that was removed, and they do want me back in two years. Not because of the polyp, but because I wasn’t fully “cleaned” out for the procedure. Next time I will try the pill method. Take two pills; drink 8oz of water or Gatorade (WITHOUT MOVIEPREP in it.) Repeat that process a few times, find a bathroom, make yourself comfortable.

We are still thoroughly enjoying the motorcycle. In fact, I am writing this journal entry from my folk’s house in Vero Beach, about an hour away from home. We rode up today to visit and have lunch with them. The bike is a blast to ride; I can see where it can be addictive. I bought floor boards to replace the foot pegs, and they are great. I also bought a chrome flame-themed cover for my radiator; it “dresses” the bike up a bit.

Nothing else to report for now….Toby the insane cat is still quite insane. I don’t expect that to change anytime soon.

Scott

Wednesday, July 22, 2009 6:32 PM CDT

I’m sure that many (if not most) of my faithful readers have moved on with their lives and are no longer waiting patiently for me to write something prolific. (I know that I would have given up on me if I had to wait this long between journal entries.)

So, to the audience of 1, or possibly 2 out there in Lurkerville, here goes nothing.

Life without Zachary still sucks! I probably didn’t need to write that out for you to be aware of that fact, but just in case….there it is. We miss him so much it hurts.

I am still plagued by nightmares where I find myself sobbing uncontrollably from re-living his death. Rebecca has been spared (for the most part) the nightmares, but she is living with the demons that haunt her while she is alone all day in this house.

Not that a change of homes would fix anything, but, it is what it is.

Hospice offers 6 free counseling sessions, (per person), so Rebecca went to one and was able to lose 3 lbs. by crying for the entire hour. I have been busy at work, but I do plan on making an appointment so that I too can join the “Cry The Pounds Off” weight loss program.

We still remain close with Chris and Sasha who lost their son Kyle about month after Zachary died. We try to see them at least once a week.

The motorcycle has turned into a good distraction. Riding safely requires a fair amount of concentration, so there isn’t a lot of time to be thinking about how much life can suck. I’ve spruced the bike up a bit…..I bought a new larger seat, so that Rebecca is more comfortable on the back, floor boards for my feet, and a slick looking chrome cover for my radiator that has flames cut into it. (I’ll try to get some new photos for the page.)

We had a pretty good vacation in Tennessee with our family. The lake was beautiful, as always. The fishing, boating, skiing and family time were all great. Both of us had our moments where not having Zachary there with us was somewhat overwhelming, but we were able to get past those moments and not let them define the vacation.

Toby the psychotic schizophrenic cat remains psychotic and schizophrenic. When I was growing up, we always had dogs. Dogs will come when you call them, snuggle with you, and make you feel like your love and affection is appreciated. Cats are just like that, except for the parts that include coming when you call them, snuggling with you, or showing ANYTHING close to appreciation for the affection that you give them. Come to think of it….cats are HORRIBLE dogs.

Toby is finally starting to come out of hiding more when visitors come over. So now people at least believe us when we tell them we have a cat. He still attacks my feet in the middle of the night on occasion, just to keep me honest. The biggest thing we have noticed lately is that he is much more affectionate since we returned from vacation. (10 days away will do that.) Maybe we should leave him for a year or ten….just to make sure.

After Zachary passed away we gave most of his video games away to his friends. The ones that no one wanted, we returned to our local store that gives you a credit, so that you can get other games, etc. We never did anything with the credit. The other day we were visiting with a friend who has the Wii Fit, and we liked it, so we took the last remaining game console to the store and with all of our credits, we were able to get a Wii Fit for about $8.00.

Just when I didn’t think that I could feel any worse in life, I have now have a machine that tells me I have a virtual age of 50 and that my balance is all out of whack. Some of the games are fun, so we’ll keep playing with it and see if we can get addicted to something new.

Rebecca is recovering well from her surgery on Monday. She had a cyst removed from her upper leg (lower butt) area. I would post a photo of the operative site, but our couch is not too comfortable, and I have my own medical procedure coming up this Friday (and photos from that could prove to be a bit awkward.) I am one year late on my three year checkup colonoscopy that I was due for last July.

I don’t want to disparage the gastrointestinal specialty, but who in their right mind came up with this procedure? I am QUITE sure that if you traveled to the Amazon jungle, and found some native tribe, and then got a translator to explain to them what a colonoscopy was, and that you were going to undergo the procedure voluntarily, you would see genuine shock on their faces, probably followed by them shooting poison-tipped darts through blow pipes into your neck, after which they would sacrifice you to their God of imbeciles.

Well, enough of my rambling for one night. I sincerely hope that everyone out there who has found this new update is doing well and surviving life in general. I wish that I had the mental energy to write here more often, I always enjoyed composing my updates, and reading all of the feedback from my lurkers……but this existence of ours is draining, mentally and physically. I will continue to try and post occasionally, but I cannot promise that it will be on a regular basis.

Scott

Tuesday, June 23, 2009 9:15 PM CDT

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

Rebecca and I ran into our friends Chris and Sasha on our first trip out together on the bike…..they snapped this photo.

Scott

Thursday, June 18, 2009 7:49 PM CDT

About 5 days after successfully completing my motorcycle safety course and getting the endorsement on my license, I found a used bike at a local dealer and dove in headfirst. I have a couple of close friends who have been riding for years, and I listened closely to their advice about which bikes are reliable, and retain their value the best. I couldn’t afford a Harley, so that wasn’t even in the running, but I found a 2006 Honda Shadow 750 in excellent condition with only 7,600 miles on it. We bought it last Thursday, and my buddy went it picked it up for me. Friday morning I rode about 7 miles around our neighborhood, practicing and trying to build up some confidence. Saturday, my neighbor talked me into taking the back roads and following him to the dealership, to get some things that I needed. The trip went well, so later that evening we rode out onto the island and up along the ocean, and then back across the other local causeway….a nice little ride.

I rode it up to my store to show my employees the other night, and then this morning I rode down to the dealership to pick up my permanent tag which had come in late yesterday. This afternoon I ventured into the mysterious world of riding with a passenger….I took Rebecca around the neighborhood to see how much harder that would be. After a very short trip, she asked me to take her out on the real roads to dinner…..so off we went. Other than when I stop, the whole passenger thing wasn’t that bad…..and I know she loves it.

This Saturday we are supposed to ride with some friends up along the river to Ft. Pierce (about a 30 minute ride each way), so that should be fun.

The most difficult thing about riding a motorcycle is sending and receiving text messages while trying to hold onto the handle bars. (JUST KIDDING…..I watch EVERYTHING around me while riding.)

Rebecca has been sick; she got a fever over the weekend that turned into laryngitis and a cough. When she saw her doctor on Monday, they told her that it was either bronchitis, or the swine flu. They put her on Tamiflu and an antibiotic and told her that if her symptoms didn’t improve soon, they would test her for the swine flu. (I don’t know why they didn’t just go ahead and test her….I can’t imagine it’s a big deal.) Today her fever is very low grade, and she got her voice back….so hopefully she will continue to improve so we can still go on vacation the end of next week.

I’m sure some of you are thinking that this whole motorcycle thing is another one of my famous pranks, but I assure you, this is the real deal. Our friend Sasha took a photo tonight, she and her husband Chris, their daughter Alyssa and Chris’s sister ran into us (not literally) as we were leaving dinner. I will get the photo up on the page as soon as she emails it to us. (And NO, it won’t be photo-shopped or edited in any way.)

Scott

Sunday, June 7, 2009 7:25 PM CDT

I’ve lost track of how many times I’ve written about life sucking without Zachary in it, so just to make sure everyone knows where we stand, IT SUCKS!

The reminders and triggers have changed, for me at least, but the end result is the same, sadness and reflection that too often takes me back to memories and images that are best left alone. I wish the human brain were different, or at least MY brain that is, because I have somehow managed to allow my mind to wonder back to memories that I wish I could delete from my mind. Don’t misunderstand me, there ARE memories that are wonderful, that pop up at various times, but all too often I find myself having to “force” images and thoughts out of my head.

The other difficult aspect of dealing with the constant reminders and triggers is learning to cope with the finality of it all. There is NO bringing him back. Maybe that is why I keep reliving his end. I don’t know. (I’m sure that a few thousand dollars on a psychologist’s couch would get me some answers, but what fun would THAT be?)

The finality of death is not fully “appreciated” until you have lost someone who you either; never dreamed of losing or ever fully prepared yourself to lose.

That begs the questions: 1). How does one “dream” or envision losing a child? 2). How does one prepare to lose a child?

I think the answer to both is that you don’t.

You may THINK that you have prepared yourself, but in the end, the harsh reality of living life without your child will envelope you and find a way to seep into the very core of your being, changing you forever.

Does life go on?

Well, yes it does. Rebecca is now working a few days/week for an old friend who runs a summer camp nearby and I am settling in nicely at the store that I was promoted to. We stay fairly active when we’re not working, seeing friends, going to movies, dining out, etc. We have NOT stopped living, but rather we have begun to live life a different way. I’m guessing that we have not fully adjusted to this new reality, and we may never fully “adjust” to it, but we do recognize that it is different, and there is a HUGE void with Zachary not here to be a part of it.

Enough melancholy writing for one update, now onto other news. In my last update on May 30th, (wow am I lazy or what?) I hinted at a project that I have been working on. Well, that project took a giant leap forward today.

When Zachary was home on hospice, one of our good friends was nice enough to take Rebecca out for several motorcycle rides. Gary has a very nice Harley Davidson, and now that his wife Kathy has her own cycle, and their daughter is grown, he has no one to ride on the back. They recognized that Rebecca needed some R&R, so they “hijacked” her and took her riding. She was hooked instantly. The experience gave her an activity that allowed her to escape much of what I wrote about at the beginning of this entry. Once we figured out that she had found a good escape mechanism, we began to discus getting our own bike, so that we could ride together.

In Florida, you can no longer get a permit to ride a motorcycle before becoming licensed. The state now requires that you complete a motorcycle safety riding course BEFORE becoming licensed. I happen to agree with this law, especially for folks like me who don’t have riding experience. My problem wasn’t taking the course; it was finding the time off that I needed to attend. There are two local places that offer the course. One does a classroom section on Friday night, followed by all day Saturday on the driving range, and then Sunday on the range again. The other place does the classroom on Thursday night, and then the same Saturday & Sunday range riding. Working in retail, it is difficult to get off Friday night, and then all day Saturday and Sunday. I was trying to work around my schedule, but something always popped up and made it impossible. Once I got promoted, I got control of the schedule, so I was able to start seriously looking at taking the course. I completed it today! Yesterday we took the written exam, (which I scored a 100% on,) and today we did the range exam, (which I missed nine points on.) If I had missed more than 20, I would have had one chance to retake the course. The other five people who were taking the course with me were all over the map on their scores. They all passed the written exam, but they all missed questions, and on the driving part, one of them got a perfect score, (he was an experience rider who needed the endorsement), one missed two points, (another experienced rider), the two other beginners missed 13 and 16 points respectively, and the last guy didn’t ask for his score….he just wanted the card that showed he had passed.

So, now I just to have to find my way over to the DMV in the next 365 days, and they will add “Motorcycle Rider” to my license.

We have been looking at bikes on Craigslist, and in our local newspaper, so that will be the next aspect of this project, finding an inexpensive motorcycle that is a comfortable size for me to learn on, and that we can eventually use for the both of us to take on rides. (For now, Rebecca will keep riding on the back of our friend’s bike, and I will hone my skills until I am proficient enough to have a passenger.)

Check list:

1). Tattoo – Yes indeed, I DO have my tattoo.
2). Motorcycle – I’m in the market for my hog.
3). Leather outfit – Hey, what we wear in the privacy of our home is OUR business!
4). Gang membership – Hmmmm. We hang out with Chris and Sasha a LOT, so we kind of are a gang, the four of us, sort of. (OK, not really at all, but for the purposes of this entry, we ARE the PWHLAK gang.) It’s a little bit hard to pronounce, but I couldn’t come up with an easier acronym for “Parents Who Have Lost A Kid.

There you have it, all the news about us for the time being.

Scott

Saturday, May 30, 2009 10:16 PM CDT

I know it has been forever since I updated, but I just haven’t been in the mood…..sorry.

I started a newsletter at work, and my employees are getting a taste of my sarcastic nature….so far, they seem to be enjoying it. (I guess my creative juices having been flowing in that direction lately.)

Life is so different and SO difficult without Zachary here. I stopped keeping count, but with the exception of maybe 2 or 3 nights in the past several months, I have bad dreams every night. They vary, but basically the theme is the same….I’m either just realizing that he has died, or I am just remembering that he is gone…either way, it sucks and I wake up in a bad mood.

Work is still a good distraction for me; it keeps me off of the streets and out of trouble.

Shortly after Zachary passed away, one of the many triggers that would upset us would be when we received mail addressed to him. It was usually from the insurance company, or something like that, and it just brought back a flood of bad thoughts. The one exception to that was a letter we got a few weeks ago. I opened it, and much to my surprise I found an invitation for Zachary to participate in a beauty contest for young girls. Apparently, he and his friend Brandyn had filled them out, using each other’s names, and sent them off many, many months ago. As coincidence would have it, Brandyn happened to be here the day the letter arrived, so he was able to explain to us why our SON was being solicited for a girl’s beauty pageant.

Unfortunately, lighthearted moments like that are few and far between.

Toby the cat remains as demonic as ever. He is somewhat more affectionate, but you just never know when he is going to bolt out of the room to escape being pampered and petted. Rebecca thinks that I am crazy, because I treat Toby more like a dog than a cat. I call him and talk to him like he actually cares at all what I am saying or asking of him. I’m starting to think that cats in general tolerate people as long as their food and water is provided for them and as long as someone picks the crap and pee balls out of the litter box once in awhile. Besides that, cats don’t seem to need anyone.

Other than that there is not a whole lot going on. I am working on a project that should be complete by the end of next weekend. If everything goes as planned, I will update then and fill you in. (I would tell you now, but I don’t want to jinx myself…….there aren’t enough “kaynahorah’s” to protect me.)

Scott

Friday, May 15, 2009 8:07 AM CDT

Time flies when you’re not updating your web page every other day.
(That’s my way of saying “Sorry for taking so long to update the page.”)

Today marks four months since Zachary died. (Not that I’m keeping track or anything……..but it is what it is.) Rebecca seems to be sleeping well at night, but she finds her torture during the days, being home alone with Toby (psychotic cat) in a house filled with memories of Zachary. I keep myself fairly distracted at work, and I have settled in nicely to a nightly routine of disturbing nightmares about Zachary dying or reliving some aspect of that process. I cannot remember the last time that I slept through the night without having one of these dreams. The details remain fuzzy, but there always seems to be enough of the dream left to leave me upset when I wake up. Such is life after the death of your child.

We continue to gravitate towards Chris and Sasha who lost their son Kyle about month after Zachary died. We see them 2 – 3 times a week and speak to them regularly. It is difficult to imagine going through this process without having them there to share in the daily grief that assaults us. Chris and I went kayak fishing yesterday and had fun paddling around the river, (we even caught a few fish,) and then last night we went to dinner with them to celebrate Sasha’s birthday. (I think she turned 84 yesterday….I can’t remember her exact age.)

Toby the psychotic cat continues to be an enigma. He is perpetually looking for affection, while at the same time planting himself JUST out of our reach, making it difficult to pet him. Sometimes he’ll cuddle up close to get his belly rubbed, or his back scratched, but you never know when, in the middle of petting him, he’ll rocket himself up off of the bed and out of the room. Rebecca has settled into a routine of spoiling him rotten by buying him a new toy EVERY time she goes to Petsmart for food. This is surprising to me, since 93% of his toys are banned to the closest because if he has access to them during the night, he’ll toss them around and flip them all over our bed as we try to sleep. Her latest purchase, a small crab shaped fabric toy must have magical powers, because it turned Toby into a dog that plays fetch for about 20 minutes one night. He was keeping us awake, flipping it up in the air and then pouncing on it at the foot of our bed. In disgust, I sat up and threw it out of the room across the floor. He bolted out, chased it down, picked it up, returned to our bed, dropped it on my feet, and then proceeded to stare at it. So, I picked it up again and flung it out of the room. He repeated to “fetch” the crab and drop it on my feet. I had never seen a cat play fetch before, but then again, I have never owned a psychotic pet before either. I have not been able to duplicate that game with him, so it was probably just another anomaly in the annals of Toby the cat.

In other news, I am still being contacted by people who want to know where they can donate money in memory of Zachary. Rebecca and I have discussed this at length, and we have decided that we want to focus our efforts on the scholarship fund that we created in Zachary’s memory. For those folks who would rather give to a charity that deals more directly with the children and/or the disease, we have decided to recommend the Super Jake Foundation, because of their efforts in research into finding a cure for neuroblastoma. The details for both of these causes are below. In the past I have written about many charities and organizations that we have dealt with. Moving forward, we are only “endorsing” these two causes. You can “read” into this anything that you want, because I am choosing NOT to elaborate at this time as to what precipitated this move. Suffice it to say, these are our choices, and we appreciate the generosity of the many folks who have made donations in Zachary’s memory.

Zachary Finestone Memorial Scholarship Fund
Jensen Beach High School
2875 NW Goldenrod Road
Jensen Beach, FL 34957
772-232-3500

The Super Jake Foundation
P.O. Box 477
Gurnee, IL 60031
847-625-0224

Scott

Sunday, May 3, 2009 6:36 AM CDT

Well, another week has gone by without an update, so I guess today is as good of a day as any to jot down some thoughts and touch base with everyone.

I don’t remember whether or not I’ve written about the annual Relay for Life, but Rebecca and I were in Memphis for the Jensen Beach one this year. It was held at Zachary’s high school and it was designated as being in memory of Zachary. Before leaving for Memphis I wrote a speech on behalf of our family that was read by one of the school coaches. We haven’t seen the video from the event yet, but we were very honored to have had the relay dedicated to Zachary’s memory.

The other exciting news from this past week came on Thursday night at the high school. We presented the first annual Zachary M. Finestone Memorial Scholarship at the scholarship night. Over $1,000,000.00 was given out in scholarships! The recipient of Zachary’s scholarship was Emma Enos. She and her twin brother Ronnie were the only two applicants this year (we were very late in getting it organized), and they also happened to be the two friends of his who came EVERY day that he was home on hospice care to visit. We were very pleased to have had the opportunity to present this scholarship and to have created a legacy at his high school that will hopefully keep his memory alive there for years to come.

Several journal entries ago I wrote about how I frequently have dreams about Zachary. Usually the dreams involve me “remembering” that he is dying of cancer, followed by me sobbing in my dreams until I wake up. Last night I had a completely different type of Zachary dream.

For the first time since his passing, I had a dream where he visited me as a ghost. I was sitting in a room and I thought I heard his voice, when I turned around, he was there. I could see him, hug him, and speak with him. Most of the details of the dream are still fuzzy in my mind, but I do recall that Rebecca was there, along with some friends. We were all talking with Zachary, hugging him, and taking pictures (I guess to prove that he had visited us.) I can’t remember what we talked about, which is very frustrating, but I do remember seeing him and hugging him and crying endlessly.

Last night was prom night for Zachary’s high school. We were invited down to Ronnie and Emma’s house for dinner and to visit with all of the kids who were attending the prom. We know most of them from AFJROTC, so it was nice to see them all dressed up and getting ready for their senior prom. While I definitely had some feelings of sadness, when thinking about how we’ll never get a night like that with Zachary, it was nice to see all of his friends experiencing a wonderful night, especially after all that they have done for our family.

Work has been keeping me out of trouble lately. I got promoted to the position of store manager about two weeks ago. The manager who trained me, Steve, moved back to Georgia to manage the store he was in seven years ago before he moved here to Florida to help the company build up the market here. The store is open 24 hours and has a great crew who helped to train me when I was hired back in September. These are the folks who covered for me at work and offered moral support when we had to bring Zachary home on hospice care to die. I am very lucky to have been promoted into that store.

I guess the biggest news these days is the H1N1, or swine flu. At work, we have been selling tons of masks, sanitizer, and disinfecting wipes. People are preparing to travel back to the north for the summer, and they are worried about catching the bug on a plane or wherever the bug is hiding out. Rebecca and I have been following the news coverage to try and gauge how serious this is going to be, but the “experts” are all over the map on whether this is going to be the “Big One.” Now that we have confirmed cases in here Florida, I’m guessing that folks will be more conscience of germs and we’ll probably get pretty busy on the items that I mentioned.

Toby the cat is crazier than ever. He is slowly getting used to our house, which is nice, because we actually get to see him most of the time now. He rarely hides under the bed anymore, so hopefully we are beginning to convince him that we are NOT the enemy, and we mean him no harm.

That is all of the news that I have for now.

Scott

Sunday, April 26, 2009 8:28 PM CDT

Sorry for the lack of updates, again. Time doesn’t appear to be stopping to give Rebecca and me a chance to adjust to this new life. We have to make our adjustments on the fly I guess.

Last week we were scheduled to attend a group bereavement session with our friends Chris and Sasha. The group is for people who have lost a child. Rebecca got sick with a fever and nausea and was unable to attend, so I went with Chris and Sasha. Most of the folks there had lost older children, and not to illness like us. Having said that, they were very understanding and accepting of having us in their group. It was tough. But, we made it through it OK.

We just got home from our first real “family” test without Zachary. We were in Memphis will tons of extended family for a celebration of my nephew’s Bar Mitzvah that took place in Israel during December. We knew that it was going to be difficult, seeing all of the kids together, and Zachary not being there, but we had no idea just HOW difficult it was going to be.

There was a Friday night service to bring in the Sabbath, and we figured that would go well….we were wrong. We forgot that part of that service includes prayers to remember loved ones who have passed away. That, coupled with the Rabbi calling all of the cousins up to help with a prayer, and there being an obvious void with Zachary not being there to be a part of that group anymore. After services we were at my brother’s house for dinner, and we thought things would be easy, once again we were wrong. My brother had put together a very nice video from their trip to Israel. In that video, the Rabbi mentioned a few times how my nephew had included a prayer for healing, for his cousin Zachary. (That was in December when we had Zachary home on hospice care.) So, Friday night was tough. We were assured that Saturday’s service would be brief and that there would be NO mention of praying for the dead, or anything else that could set us off. Unfortunately the Rabbi didn’t get that memo. At the very end of the service, he made mention again of how impressed he was with my nephew’s healing prayer for his cousin Zachary. The Rabbi then went on to talk about how Zachary had passed away……and well…..you know the rest. (So, tears and misery Friday night, more tears and more misery Saturday night.) Then after the service and before dinner we were treated to a nice slide show for my nephew that of course included pictures of all of the kids together at various family gatherings…..and of course Zachary was in many of those, and of course he was not with us this weekend. (More tears, more misery.) You get the idea.

Life sucks right now.
This is part of the process.

What are our options?

Ignore family gatherings and become hermits?

OK…..where do I sign up for that program? Is there an island that we can move to where we won’t have to be exposed to ANYTHING that will trigger more tears and misery? (Probably not….but I’m WILLING to try.)

I’m seriously considering devoting the rest of my life to developing a time machine so that I can go back to having Zachary with us. (I’ll get right on that.)

Scott

P.S. I had a request in my guest book for visitors to send prayers and warm thoughts to the family of a little girl who is getting a transplant. Here is her link, please take a moment to drop in and write something nice. Thank you.

www.caringbridge.org/visit/kenseylewis

Tuesday, April 14, 2009 5:52 PM CDT

Thank you to everyone who submitted guesses for my Zach fact game. I received 12 correct guesses via email. The folks who had the correct answer were:

Jackie
David
Phyllis
Shayne
Barbara
Jen
Angela
Haley
Susan
Olga
Stacey
Bethany

The word that I was looking for was ‘twinkie.’

After I wrote the 12 names on a sheet of paper, I wrote the numbers ‘1’ thru ‘12’ on small scraps of paper and then balled them up. I took all 12 balled up pieces and shook them up in my hands, and then I threw them on to the floor in front of Toby the possessed cat. The first one that he ventured over to investigate was #6. Congratulations to Jen in Canada, she is the winner. I have already notified her by email and given her the choice of a signed book or t-shirt.

For those of you who don’t remember that story, I’ve included that entire journal entry below. The date was 3/14/04. Enjoy!
Sunday, March 14, 2004 8:22 PM CST
You know, these web sites are great. They really serve an important service for families like ours. Being able to reach out and communicate with everyone and give them updates from the comfort of our home is a beautiful thing. Of course, I don’t imagine the wonderful folks at Caring Bridge ever imagined that sick demented guys like me would be using these pages to convey more than just the usual medical occurrences. I have to say that in addition to being blessed with a wonderful child, I am TRULY blessed to have a son who provides me with daily material for my entries. Now, before I continue, I feel obligated to provide one of my patented disclaimers. Most of you know that Zachary is not my biological son. Having said that, most of you who have met him know that he and I are very much alike. Whether he takes after me or whether I take after him can be debated for centuries without resolve, but the point is, most folks feel he is more like me than Rebecca. This next story reflects a part of our lives where I want to make it clear that Zachary does NOT take after me. Do you need to reread that last sentence? I am taking NO ownership for any of the comments that he made today.

It may come as a surprise to the women reading this page, but some men, (NOT ME,) feel it is cute, or manly, or clever, or something, to give their private parts a name. [IT IS IMPORTANT THAT YOU KNOW AND UNDERSTAND THAT I AM NOT ONE OF THESE KIND OF GUYS.] (With the possible exception of a lapse in judgment during college, I have never partaken in that particular ritual.)

So, here we are getting ready for our day of urine collection. Now, Zachary has peed in a variety of bottles, jars, and urinals during his various stays in hospitals. He has always required the help of either Rebecca or me because he was never able to hold the container and do his business. Well, he is older now. I guess I figured that a ten-year old could handle it. Especially considering the fact the 24-hour collection bottle is a massive container that he could rest on the toilet seat and easily manage. So, you can imagine our surprise and shock today when Zachary asked for help, and I said "You can do it alone."…and then those magic words that every parent dreams of hearing came blurting out from the perfectly straight face of our boy. “I can’t hold my Twinkie and the bottle at the same time.”

I want to make it clear that I have NEVER referred to my unit as a Twinkie, Ho-ho, Ding Dong, Suzie Q, or ANY other cream filled pastry for that matter! This one falls totally in his lap….(as it were.)

Well, the moral of the story is he did need help. It was either that or we would need to invest in some more mops and wipes to clean up the floor.

There you have it, the “famous” Twinkie story. I’ll have to come up with another contest that is more challenging. I heard from a few folks that you can search the old journal entries for word strings. (Not fair!) I’ll have to come up with something that cannot be searched so easily.

Scott

Saturday, April 11, 2009 9:26 AM CDT

WOW! When I went to bed last night a little bit after midnight, we were about 700 visitors short of the 1 million mark. I just signed on this morning and we are now at 1,000,062! We must have hit the million mark some time during the middle of the night.

Thank you to everyone who visits our page (including Tricia) for helping us to hit this milestone. We are about one month shy of our 7 year anniversary for this page, so if you do the math, we have had 142,857 visitors each year, 11,904 each month, 384 each day, or about 16 every hour.

In retrospect I would MUCH rather of had the page hit about 8 visitors back in 2002, followed by me writing; “Zachary is in remission, we don’t need this page anymore.” But fate had other plans in store for us, so here we are.

I have no way of tracking or determining who was the millionth visitor, if I did, I would surely have come up with some sort of prize, perhaps an autographed copy of my world famous book. (If the millionth visitor didn’t already have one.) Hmmmm. Maybe I can come up with another contest to celebrate our visitor milestone. Let’s see.

Rebecca has suggested that instead of one of my signature riddles that I usually use for contests, I should come up with a “Zach fact.” Some tidbit of information that has been posted in a journal entry at some point. The other thing that I will do is offer a prize choice. (In case one of the 4 people who has read my book wins and does NOT want a second book.) The prize choice will be either an autographed book or one of the t-shirts that the high school came up with. If you don’t remember the shirt, it has the two tattoos that Zachary had, one on each sleeve, on the front it has “JBHS Remembers”, and on the back it has the full color picture of Zachary.

So now I just to have to come up with some “obscure” Zach fact that will get your memory juices flowing. In a further attempt to keep things fair, we will eliminate any or our family from participating, and also anyone whose last name is Mathis, Charlton, Schmidt, Weekman, Griffin, Sprague, or any other family who would have an unfair advantage.

Fill in the blank for this famous Zachary quote:

“I can’t hold my ________ and the bottle at the same time.”

For the record, this is sooooooooo easy.

Please email guesses to me so other readers can’t cheat. I will randomly select the winner from the correct guesses. Our email address is: srfinestone@hotmail.com

Good luck everyone.

Scott

P.S. Oh, and the contest ends Tuesday at 1pm. That gives you three full days to see this update AND come up with a guess.

Thursday, April 9, 2009 7:50 AM CDT

I’m watching the news as I write this update and on the Today show this morning they are interviewing a representative from Hallmark Cards who is a writer involved in their new product, cards that are specifically for folks with cancer.

If ONLY they had come out with this line of cards a few years ago, it would surely have made our lives SO much better having a greeting card that specifically addressed the big ‘C’.

(If my dripping sarcasm gets your computer wet, I apologize.)

They are now arguing, the Hallmark rep and some other guy who thinks Hallmark went too far with this new product. It is really a stupid argument. The bottom line is that some people don’t know what to say and will benefit from a prefab message that was written by some person in a cubicle, and other folks will want to write a more personal message. Do we really need to argue on TV about this?

As with most products, the market place will dictate the viability or staying power of these cards. (If people buy them, Hallmark will keep printing them. If people don’t buy them, then they will disappear.)

The more pressing issue of the day is obviously whether or not Rebecca and I need to call a priest in to perform an exorcism on our adorable cat Toby who is clearly possessed by the devil. Along with being possessed, he is schizophrenic. Toby will go from a loving playful pet to a frantic paranoid beast in a split second. One moment you will be petting him while listening to him purr softly, and the next moment he will rocket himself off the bed and run crazily around the house. He has expanded his list of favorite toys, but clearly his overall favorite is the laser pointer. The pointer has a key chain ring attached to it, and all you have to do is move it slightly, and he will hear the noise and start looking around on the carpet for the little red light.

After we get the priest in here to exorcise him, we will be sending Toby away to a drug rehab facility to deal with his cat nip issues. If we don’t hide the cat nip toy at night, he will overindulge in its pleasures over and over again, crashing in between and then going right back to it, flinging it all over the house.

Admitting you have a problem (cat) is the first step in getting help.

We have been spending a fair amount of time with our friends Chris and Sasha who lost their son Kyle shortly after Zachary died. The good news is that having another family who is traveling down this road at the same time as us is comforting. The bad news is that life sucks for both of our families in ways that are difficult to imagine.

There are definitely “good” distractions that occur during the day/week, but overall, life is difficult. I wish that I could report to you all that as time goes by, learning to live with our reality is getting “easier,” but it is not. There are SO many reminders and triggers that assault us throughout the day, it is hard to imagine a time when we will be at peace.

We are working diligently at rebuilding our lives while learning to live with new goals and dreams. Gone are the life experiences that we worked so hard to see come to fruition:

Teaching Zachary to drive.
Watching him graduate high school.
Seeing him go to his prom.
Sending him off to college.
Watching him fall in love.
Being there for his wedding.
Experiencing life as a grandparent when he had his own children.

We got almost nine years after he was diagnosed, so some would say that we are “greedy” for wanting more. I can’t argue with that assessment. After nine years of ups and downs that constantly had us believing that the end was near, we recognize that we were VERY lucky to have gotten so many wonderful years with our precious Zachary.

Now ask yourself this; “How many years are enough?” (If it were your child, would 14 years be sufficient?) Of course not. Recognizing the quality of life that we experienced after diagnosis AND desperately wishing that we had gotten more time with Zachary are NOT mutually exclusive thoughts.
We will keep working towards healing ourselves. We will forge on. It will suck.
Scott

Monday, April 6, 2009 4:36 PM CDT

I’m glad that everyone (with the exception of Tricia) enjoyed my April Fool’s day prank. I recognize that my twisted sense of humor is not for everyone, but what baffles me is this. In my last update, I very clearly explained that the driving force behind my April Fool’s day joke this year, was to distract and entertain myself for a few short days, in a vain attempt to avoid the harsh reality that is our world. So, the obvious question that I have is this; Why couldn’t Tricia just “not enjoy” my joke and leave it at that? Couldn’t she just have read it, not liked it, and moved on? Did she really have to post “I have a good sense of humor but nothing about this is funny.”?

Being the type of person who loves a mystery, I of course immediately had to dissect her words in search of an underlying meaning. The first part jumped right out at me. “I have a good sense of humor.” Hmmm. Well, in my 46 years of experience, I have found that those individuals who have to TELL you that they have a good sense of humor, usually are the ones who couldn’t find a good joke if it were stapled to their foreheads. When I hear those words, “I have a good sense of humor” I am immediately reminded of that guy in the movie ‘Good Morning Vietnam” who was Robin Williams’s boss at the radio station. He kept trying to give Robin material for the comedy show, but he clearly did NOT know what was funny.

Maybe Tricia has an amazing sense of humor, but writing that you have one in a guest book doesn’t lend any validity to the overall comment. Everyone is entitled to their opinion, and clearly Tricia was more interested in letting us know that my joke was NOT funny, than she was in letting me enjoy the moment.

Now let’s move on to the second half of her comment, “nothing about this is funny.” Hmmm. Once again, I am leaning towards the belief that there is an underlying meaning to those words. Perhaps Tricia was horribly disfigured by a tattoo artist, or maybe she got a tattoo when she was young and fit, and time and gravity have played a cruel joke on her, making her once sharp tattoo, look wrinkled and nonsensical. We now have friends who work in the tattoo industry, and they tell us that with the struggling economy, people are less likely to spend their discretionary money on something like a tattoo. Perhaps Tricia works as a tattoo artist and she was appalled that one of her brethren didn’t get to profit from the alleged 8.5 hour full back tattoo that was the subject of my prank. Then there is always the small chance that the photo we found online belongs to someone who Tricia knows or is involved with.

At the end of the day, we are all left to guess as to what motivated Tricia to piss in my Wheaties after reading the journal entry that precedes this one. My last hypothesis is that Tricia or someone using that name wrote that guest book entry in an attempt to play an April Fool’s day prank on me, hoping to get me all riled up and hot under the collar.

I guess it’s a good thing that I am a calm, sedate individual who doesn’t fly off the handle and go nuts when someone writes something in my guest book that I don’t like.

Rebecca is now finished with her medical transcriptionist course. She is waiting for her final grade, but it looks like she passed with flying colors.

I don’t think that she can work from home until she gets some time under her belt working in an office, so I imagine she will start to look for that kind of opportunity as soon as she gets her diploma.

Scott

Tuesday, March 31, 2009 3:26 PM CDT

I am practically speechless. (Practically…..not literally.) Most of you have an excuse…………several of you have none!

For those of you who have been following my ranting and raving journal entries for many years…………this next bit is for you……

“My long lost sister called from Alaska to let me know that the pet Xneumor we gave her back in 2004 has learned to communicate through sign language and his first words after mastering the ability to communicate were……….’I want my huge tattoo back from Scott.’”

If some of you are confused……you can read the journal entries dated:
4/1/2003 (along with the few that follow it.)….and
3/29/2004 (along with the few that follow it.)

You see, apparently, years ago…..I started a tradition of creating a false story for April Fool’s Day. Each and every year our friends and lurkers would write, call and ask us about some ‘new’ extraordinary thing going on in our lives…..like the long lost sister or the monkey species that I not only invented, but supposedly brought into our home to entertain our 10 year old son who was in the middle of battling cancer and couldn’t have a pet rock, let alone a wild monkey that was flinging dung all over the place.

OK….so I’ll admit that I get WAY too much pleasure out of coming up with this stuff………and I’ll also admit that most of you haven’t been reading these updates long enough to know about my previous April Fool’s stories……..but then there are those of you who have NO excuse. I won’t name names….but if I was going to, I would certainly include Juliet, Erin, Genna, Barb, Sharon, Teri, Cheryl, Gary, Kathy, and a host of others who will never again believe a word that comes out of my mouth. Such is life once you have been labeled “Liar, liar pants on fire.”

I have one tattoo….the one on my arm that I posted a photo of several weeks ago after getting it. The ‘new’ one that is featured in the photo album is from the internet. Rebecca and I did some looking around and found one that looked interesting enough to use for my story. I do not know whose back that is, or whose house the photo was taken in.

Rather than focus on your own gullibility for having fallen for my prank, we should ALL be looking into the twisted psyche of a certain unnamed father who played upon his own nightmarish emotional journal and then wove those aspects of his life into the fabric of the fake story to add believability to it. What kind of twisted nut would do that? (HEY, PICK ME!)

Clearly there are NO boundaries that are sacred when it comes to my eagerness to succeed….whether it be in a game of pool, cards, at work, or even at a ‘harmless’ April Fool’s Day prank.

I will use my universal “Get out of jail free” card and say that this is the way I deal with my grief, by entertaining myself with how I can screw with everyone else.

If you are indeed one of the many who fell for this, don’t beat yourself up too much….you are in good company. Your fraternity is large, you are NOT alone.

Scott

Wednesday, March 25, 2009 9:04 PM CDT

Life is cruel.
I meet people from all walks of life, and when they learn of our story, Zachary’s story, the reaction they have and the comments they make are just incredible. I met someone new the other day who kept comparing what happened with us to what she was experiencing with her mother. Her mother is going through chemotherapy treatments. She is still ALIVE…(obviously……..you don’t give chemo to dead people.)

What’s interesting is that this isn’t the first time that this has happened. I think that most people just can’t wrap their heads around the concept of losing a child like this. I think their brains hear what is being said, and then they scramble mentally to find some level that they can relate on. Now, I am in no way saying that Zachary’s medical ordeal and subsequent death is “worse” than someone else’s mother who is battling a serious illness…..I’m just saying that I am continually amazed that people seem to avoid the reality of what we went through, and then compound that lack of understanding by trying to compare their experiences to what we went through.

I don’t want to harp on this…..I know that I’ve written about this before, but it is definitely something that keeps coming up with us, as we move forward with life and try to find our way on this Earth without Zachary to guide us.

We have spoken to so many people who have gone through this, and the one reoccurring theme that keeps popping up is the emphasis on NOT making any life-changing decisions while enduring this process. Don’t move, get divorced, quit your job, chop all your hair off (mine’s gone already)…or do anything stupid and permanent like get a tattoo. Actually, the tattoo has worked out well……….I still surprise myself when I see it, like I forgot that I have it……..and it reminds of me of Zachary, in a good way. Our friend Chris, (you remember Chris…he is the one who talked Zachary into getting the tattoos in the first place), well Chris warned me that once you get one tattoo….you’ll want more. I of course know everything there is to know about everything, so I laughed at him and said, “One is enough……..I got the one that I want, I will not be tempted to get another.” Of course…….I was wrong. We were cleaning Zachary’s room and I found some of the drawings that Zachary’s uncle Ian had drawn for him, and one really caught my eye. The problem with it was that it had sooooo much detail, I knew that it would require a much larger tattoo than the one that I have on my arm. I spoke with the tattoo artist, and gave him a week or so to play around with it, but in the end, he agreed that the only way to keep the detail intact was to make it a VERY LARGE tattoo on my back. I did a little bit of research, (asking folks who I knew had them on their back), and the consensus was that it didn’t hurt, but that it was quite time consuming. The good news about back tattoos is that they don’t interfere with work or careers, because no one can see them. (Unless you’re a life guard or topless model.)

We waited for my day off and scheduled the necessary time with our friend the tattoo artist. I should have known that I was in for the long haul when they asked what I was going to be wanting for dinner. (We had arrived at 1pm.) 8 ½ hours later (30 minutes of dinner were in there), I had my back tattoo……….and to those who told me that it would be painless……..I say……well……I can’t say what I want to say, because some youngsters still read this page……..but if I were to say something….I would probably be saying something similar to male cow manure.

Rebecca took the obligatory photo, so if you go to the album, there is a photo of my tattoo………taken approx. 35 minutes after the bandages came off…..so it was VERY fresh….and VERY raw.

I once again will say, “I am NOT getting any more tattoos.” Hopefully this time I will keep the painful memories fresh in my mind so I don’t do something stupid again.

There is a blood drive this weekend that will benefit the local children with cancer; it is being done in memory of Kyle and for a little girl who is still battling cancer. We hope to attend to be there with our friends, Chris and Sasha. That will be Saturday….my next day off…..NO, I am NOT getting anymore tattoos this week…..or EVER again.

Scott

P.S. For those of you who asked about the scholarship, yes, Rebecca and I will be presenting the scholarship to the winner…….we fully plan on being there. The information about the scholarship is still available in my previous journal entry.

Sunday, March 22, 2009 9:35 AM CDT

I am still operating without the use of my computer. I have the laptop and Rebecca’s computer at my disposal, but I “miss” my computer. It is still being worked on by a friend who is trying to salvage the hard drive.

Rebecca and I have been finding ourselves triggered into hard memories lately in a variety of seemingly innocent places. I guess the lesson here is that “nowhere is safe.” If I had taken the time to read the books on grieving, I am sure that all of them include warnings about how memories WILL be triggered at “odd” times and that they will be difficult to handle.

Such is life after death.

Not fun.

Not easy.

I’m too lazy to go back through my journal entries to see when the last time I wrote this, so I’ll just rewrite it today to make sure everyone knows……CANCER SUCKS!

On a brighter note, Rebecca and I were able to set up the scholarship in Zachary’s name with the donation that the AFJROTC gave to us at their military ball. With that check, there are now enough funds for two years of scholarship awards. As I mentioned a while ago, some of you have been asking about donating to that fund. Anyone interested in donating to the scholarship fund can do so by mailing a check to:

Jensen Beach High School
2875 NW Goldenrod Road
Jensen Beach, FL 34957

Make sure that you indicate on the check and in your letter that the funds are for the Zachary Finestone Scholarship.

The school is depositing the funds and issuing the scholarship check at their annual scholarship awards banquet, so Rebecca and I are completely removed from the financial end of that process. For anyone interested in knowing who is eligible, here are the criteria for the scholarship:

1). Student must be a graduating senior at JBHS.
2). Student must have a least one year of ROTC participation.
3). Student must have a post-graduation plan. (College or military enrollment.)
4). Scholarship will be awarded once each year to one student.
5). Scholarship is non-renewing. (The student only gets it one time.)
6). Eligible seniors must submit a 500 word essay by 4/3/09 answering to this topic: “Describe your future goals and how they relate to the betterment of society and/or those in need.”
7). Scholarship will be awarded in the amount of $500.00.

The essays will be given to Rebecca and me without the student’s names on them for us to review and select a winner from.

With or without donations, Rebecca and I plan on keeping this scholarship going for many years to come. While we recognize that this process won’t bring Zachary back to us, our spirits are truly lifted when we think about being able to keep his memory alive at the high school where so many good friends and memories exist.

Scott

Wednesday, March 18, 2009 6:35 PM CDT

Nothing much to report here…….just wanted to do an update before another week flew by on us…..so here it is……..another update.

Toby the cat had his vet visit today……….all of the drama apparently came before the visit, when Rebecca and our friend Susan chased him around for 15 minutes before catching him to place him in the pet carrier. (I was conveniently at work.) Apparently he does not like the carrier……or the car too much. Surprisingly though he didn’t have a problem at the vet’s office……he stayed on the examination table and let them do a variety of fun things to him….shots, blood samples, nail trimming….etc……all without biting or scratching anyone….and without leaping off of the examination table and hiding in a corner.

So now he is up to date with everything. They also checked him out for various illnesses and found that he is fine…..even his poop came back OK.
Toby is still on a night time schedule, so he’ll walk across my back while I’m trying to sleep at 3am……..we’re still hoping to break him of this schedule…….time will tell.
Rebecca is almost finished with her transcriptionist course, so she will soon be in the market for work! YEAH.

Scott

Sunday, March 15, 2009 9:04 PM CDT

Rebecca and I still check our guest book daily, and it is nice to see that people are still checking in on us and thinking about us as we try to navigate these uncharted waters.

“Time heals all wounds.”
“Every day it will get a little bit easier.”

Bullshit…..and more bullshit!

I had gone several days without having a breakdown or a major emotional spell, and then the other night I got whacked out of nowhere while at work. I was covering at another store, closing for them because one of their key people is out on a leave of absence. Until now I had only worked at the 24 hour store, so I hadn’t done the closing procedures for CVS. There really isn’t a whole lot to know, but as part of the evening duties, I had to make sure that the store got “faced.” That is basically retail talk for straightening all of the merchandise on the shelves so that the store looks presentable for business at the beginning of the next day. I had good help, so we split up the store and went about the task of walking up and down the aisles, straightening any items that had been moved, or shoved back onto the shelves. It’s a pretty mindless task that should in NO way invoke any bad thoughts or memories.

I had completed about half of the store, touching items ranging from diapers to insect repellent to vitamins to cough syrup…..all without any problems. Then I got to the eye and ear section……….and what should have been a harmless area to work on. I was straightening out the boxes of eye drops and when I got to the ear section, there was only one box that was sitting askew and needed to be straightened, it was a medicine for ringing in the ears. As I reached down to put the box where it belongs, I had a sudden memory of Zachary complaining about ringing in his ears several weeks before he died, and then it hit me hard………HE DIED! He is gone.

It was like it had just happened all over again. It took everything I had not to break down right there and become a blubbering fool. The pit in my stomach felt like a knife had just been thrust into it and twisted over and over again. Why had a seemingly innocent box of ear ringing medicine done that to me……..who knows? Maybe I was just “due” for a moment like that, and the medicine thing was a coincidence. I guess it doesn’t matter WHY it happened….it just matters that now I am scared $hitless about what will trigger such raw emotional torture the next time.

Make no mistake about it…..there will be more episodes like that one. I firmly believe that this is part of the process, a fact that in NO way comforts me or makes me feel at ease.

Today was our 11th wedding anniversary, a day where we should be happy and wanting to celebrate life……neither of us was the mood for that. We have tomorrow hanging over our heads………tomorrow is the 9th anniversary of Zachary’s diagnosis day. Now, if you have read my book, then you will surely recall that I made a grandiose statement in there about NOT attaching anymore significance to dates than is already warranted by the occasion. In other words…….diagnosis day was bad enough WITHOUT having to think of it as the day after our anniversary. It’s like when Zachary relapsed back in February of 2002. I was sitting with two of the nurses signing consent forms to start the chemo and they couldn’t remember the date. It happened to be my birthday, (2/11) so I mentioned that I knew it was the 11th, because it was my birthday. They both were immediately upset that we had to start chemo on my birthday. My comment was, “Is there EVER a GOOD day to have to start chemo?”

Once again, as I wrote in my book…….you can focus on the fact that your child’s diagnosis day is the same day that your great aunt Linda twice removed had a dog who was hit by a car that was driven by a man whose second cousin once knew someone who died that day. Sure, it might make it more dramatic when telling people, but do events like that really NEED to be dramatized anymore than they already are? I think not!

Let’s just say that tomorrow stands alone as a sucky day in our history. The fact that it falls 1 day after our anniversary, 15 days after Zachary’s birthday, 33 days after my birthday, 9 days after my father’s birthday, 5 months and 15 days after Rebecca’s birthday, 2 weeks and 1 day after we adopted Toby the cat, and 1 day before St. Patrick’s Day……let us NOT focus on the never ending connections that can be made to one horrible day in our lives.

Speaking of Toby, he continues to be a shy animal that is mostly nocturnal. He IS getting better about coming out from hiding to play with us, so I remain hopeful that over time he will get more and more comfortable with us and this house so that we can enjoy his company.

I noticed on our front page that we are slowly approaching the 1,000,000 mark for visitors to our page. I am humbled and in awe of the many folks who take time out of their busy schedules to look in on us and visit. Thank you again to everyone out there, lurkers included, we appreciate all of you.

Scott

Sunday, March 8, 2009 12:18 AM CDT

Yesterday was the church service for Kyle Wahl. (I missed the memorial service on Friday because of work, but we wouldn’t have missed his church service for anything.) It has been 52 days since Zachary passed away, and it should come as no surprise that the emotions and wounds from that time are still quite raw and open. Kyle’s sister Alyssa read one of the opening portions of the service, and I was a mess barely 4 or 5 words into it. I couldn’t even tell you what she said, just the thought of her having to do that, for her lost brother, was overwhelming. Then at the end the priest brought Chris and Sasha up on the pulpit to say a prayer with them, and once again it was impossibly hard to see friends having to experience what we just lived through.

The combination of “old” emotions surfacing like lava spouting from an active volcano, and the thought of losing another special young boy to this monster is monumentally difficult. During one part of the service the priest said, “I don’t possess the ability to read minds, but I know what one word is on everyone’s mind here today…….it has three letters, and the word is ‘why?’” “Why has God taken such a young boy from his family, why did he have to leave us now?” “The answer is, we don’t know. Anyone who would pretend to have that answer is just guessing.”

While the priest’s words were relevant and struck a chord with almost everyone there, I think that the families who have lost a child are wrapped up in a deeper mystery……”How do we make sense of what has happened, and how do we go on from here?” It is not just about the ‘why’, but also the constant second guessing, confusion, and feelings of being lost in a surreal dream that you can’t wake up from.

The pain that I experienced yesterday was multi-faceted. It was for Chris and Sasha for losing a son, for Alyssa for losing a brother, for their parents for losing a grandson, for their extended family for losing a nephew/cousin…..and it was also for Rebecca and me, for losing Zachary all over again. 52 days is not enough to avoid travelling down that road of hell…………..nothing was going to keep me away from helping my friends mourn the loss of their precious son Kyle, nothing! I knew that I would be facing demons that would wreak havoc on my emotions, but sometimes you have to put your big boy pants on and take it like a man.

In other news, we are still trying to adjust to life with a crazy cat. Toby is by far the most affectionate and loving cat that I have ever been around……….IF YOU CAN GET HIM OUT OF HIDING. You literally have to drag him out from under the bed to pet him. Once he is out, he will roll over and let you rub his belly, and he will purr and enjoy the attention thoroughly……..but you have to get past dragging him out first. Rebecca bought one of those laser pointers, and that is one of his favorite toys. It won’t always work at getting out and about, but he does enjoy it when he has ventured away from under the bed. The other difficult aspect of his personality right now is that he is nocturnal. He is so skittish during the day that he hides under the bed and won’t eat, drink, pee or poop……until the middle of the night….when he finally decides it is time to play, pee and poop. His other interesting habit is attacking my toes through the blanket while I try to sleep. My restless leg syndrome has provided some of his greatest entertainment so far. (I just knew my ailments would come in handy one day.) Now if I can just figure out a way to keep him from burying his claws into my feet while I’m in the middle of REM sleep.

My computer is still out of order. Rebecca and I are sharing the laptop while we wait for a friend who has said he will take a look at it and try to repair it. I promise that I would be updating more if I had access to my computer. I am not a huge fan of laptops, so I don’t go online too often right now.

Scott

Monday, March 2, 2009 7:56 PM CST

I assure you that my lack of updates is not due to me having insufficient writing material…….unfortunately, my main home computer has been giving me fits lately. It has been freezing up almost immediately after turning it on, so whenever I go online, or try to type a journal entry, I get locked out. I have tried just about everything from disk defragmentation to virus scan updates and sadly, my lack of computer expertise probably got me into some trouble yesterday. After an entire day of trying one thing or another, I somehow clicked on “Recover System” and apparently my computer went back to its factory settings, WITHOUT all of my saved files and photos on it. (Rebecca’s computer has the important photos of Zachary.) At this point, I am ready to just get a new tower and start over……I am sick of fighting with this thing, so I will begin to research my options.

Life is still impossible here on planet depression. I don’t want to keep reiterating how much it sucks not having Zachary with us, but I REALLY hate this.

For those of you who ventured over to Kyle’s web page when I wrote about him, you are probably aware that he passed away last Tuesday evening. Rebecca was able to fly up to New York with Teri from the Connor Moran Children’s Cancer Foundation to be with Chris and Sasha. I think it was good for them to have her there, and it was good for her to be able to help them begin this new horrific journey. There is going to be a memorial service on Friday at 6pm at Morningside Church in Port St. Lucie, and then on Saturday morning at 11am there will be a celebration mass at St. Martin De Porres Catholic Church in Jensen Beach. I have to work Friday night, but I was able to get Saturday off so that I could attend the service. Rebecca will be there for both services.

I am still having dreams about Zachary….still nothing prophetic, just a lot of crying and sadness…..I keep “rediscovering” his death. It’s almost like a horror version of Groundhog Day…….I get to keep living it over and over again.

Rebecca is jealous because she hasn’t dreamt about Zachary yet….I keep trying to convince her that she does NOT want to have these dreams.

Rebecca has been pretty lonely at home while I am at work, even with her friends checking in on her and doing things with her, so we talked about getting a cat. She has been doing some research online and we went to a shelter a couple of weeks ago but every cat she liked tried to bite her, so we gave it a rest for a couple of weeks. A couple of days ago she found another interesting looking cat online, so we drove out to the rescue home on Saturday and checked it out. It was at a no-kill facility that has about 150 cats. The one we liked was just under a year old, very friendly and playful…………with one defect….it has a broken tail that it has had since birth. We applied to adopt it, and the woman who runs the place delivered it to us yesterday. Unfortunately the cat has never been away from that house, or all of those cats, so it was very shy, and hid under our bed for most of the night….crying…….and looking for its playmates. It didn’t venture out much today either, according to Rebecca, but after I got home from work, we carried it out to the family room and it spent quite a bit of time exploring the rest of the house. Hopefully it will get used to us and be a great pet and good company for Rebecca.

Oh…..the cats name is Toby. I have only ever owned one cat before, about 18 years ago, and its name was also Toby. Rebecca’s brother Ian was called Toby growing up, because of his middle name being Tobias, so we were happy with the name and decided NOT to change it.

If nothing else I am SURE this pet will give me lots to write about.

The only other exciting news comes from the Military Ball that we were invited to on Saturday night. The Air Force Junior R.O.T.C. at Zachary’s high school had their annual ball and invited us. They only would tell us that they had a presentation they wanted to include us in. The ball was at a local golf country club and we did end up having a nice evening. I wrote before about one of the cadets who has been selling the t-shirts to raise money for us, well the presentation was them presenting a very generous check to us along with two framed t-shirts signed by everyone in the R.O.T.C…..one showing the front and one showing the back. I was able to thank them all while Rebecca stood by my side crying.

As I wrote earlier, we have decided to take this check and open an account that will be used towards a scholarship at Zachary’s high school. I still need to meet with the school officials to hammer out the criteria and guidelines that will be used, but our tentative plan is to be able to offer a $500.00 scholarship each year to one senior from the R.O.T.C. We are working on an idea for an essay contest that would get judged, with the winner receiving the check at the annual awards ceremony in May. It is going to be tough to pull it together for this year, but once we get it set up, it should run smoothly. With the check that we received on Saturday night, we already have enough money to fund the scholarship for the first two years. Many of you have written to us asking about making donations to this scholarship fund, so once I get it all set up, I will pass along that information so that anyone interested in contributing can do so.

We are excited to be creating something that will keep his memory alive at his school. He was only there a short time, but the faculty and students were so kind and inclusive with him, they really made his last weeks special for all of us.
Scott

Sunday, February 22, 2009 7:37 PM CST

Sorry for the lack of updates….things have been somewhat rough.
Work has been keeping me busy during the day…for the most part, but mostly I am a prisoner of my thoughts. We both miss Zachary so much; it is hard to put into words.

I am having a lot of bad dreams……….the reoccurring one that I keep having is where I am in one situation or another and I realize that he is gone….and I start crying uncontrollably. (Sobbing is probably a better description.) Every time I have this dream…I wake up in a foul mood.

Rebecca has read two of the grieving books already……so she is ahead of me in that category. When we talk about what we are experiencing, she’ll say, “That is in the book!” My response to that is, “Yeah, I know that most of what I am feeling is in the books……I know that it is part of the grieving process….I know that there are many, many parents who have had these same feelings…..but unfortunately, NONE of that helps!”

I DO have survivor’s guilt.
I DO regret some of the medical decisions that we made before coming home on hospice. (Something that I promised myself that I would never do.)
I DO regret not sitting with him more when his friends were visiting.
I DO have guilt every time I realize that we no longer have doctor’s appointments, hospital visits, new medical bills, etc.

I have ALL of those wonderful emotions rattling around in my head. And knowing that they are “normal” doesn’t help one little bit.

This sucks!

Thank you to everyone who said a prayer for Kyle and his family. I realized after the fact that I never gave you their Caringbridge page info. It would be nice if you could all let them know that there are a lot of folks out there pulling for them. Here is his page info:

http://www.caringbridge.org/visit/kylewahl

Kyle is having a VERY rough time, so the family is going through hell right now. Let’s show them how we can rally around a family in need. Send them some nice guest book entries please!

Scott

Friday, February 13, 2009 4:10 PM CST

If you missed the update that I posted on my birthday (2/11), then you may want to go back and read it. The photos of our tattoos are still in the photo album, so if you missed those, don’t fret…..they are still there.

In the past few updates I have conveyed to you all some of the feelings and emotions that we are experiencing since the loss of Zachary. Certainly this has affected us in a profound way, and some of the thought processes and ways we deal with issues will change forever.

One issue in particular that I now find myself rethinking is my continued bashing of the insurance company over the past several years. When Zachary died, I contacted them to let them know that we would no longer need their policy. (He was self-insured, so there was obviously no need to keep that policy.) After I called them, they called back a few days later to ask for a letter from me to be faxed to them explaining the situation and to “formally” cancel his policy. I had no problem doing that, it made sense. I also included a copy of the death certificate, that way there could be no misunderstanding or ambiguity over what had transpired. (This next part is hard for me to type…I get emotional thinking about how harsh I was over the years to them, especially when you factor in the amazing letter that they sent to us after learning of Zachary’s death. I will probably have to eat some crow and apologize to them.)

Here is the text from that letter:

“To the Parents/Legal Guardian of Zachary,

Good health is a gift….and we want to help you and your child make the most of it.

That’s why we’re writing to you and your child about a program offering personalized information and tips to help your child reach and sustain a healthy lifestyle. Here’s how it works.”

When health care claims are submitted to us, we review them and identify steps you might take to help improve your child’s health. We also share this information with your child’s doctor, (inserted here was the name of a doctor who we have never heard of,) so you can work together on the best course of action.

This is part of our ongoing commitment to helping your family and others we serve to improve their health, well-being and security. We are equally committed to protecting you and your family’s health information so all aspects of this program comply with state and federal privacy laws and regulations.”

Hmmmmm………WOW…..they are REALLY on top of things over there at Cigna. I mean…..how insightful……….to send a family who has just lost their child a letter that explains how to keep your child healthy.

You may like my writing style….you may even think that I have some level of creativity that I have displayed here over the years….but I assure you…..I CANNOT MAKE THIS CRAP UP!!!!!

The other genius move that they are now pulling is to delay paying our providers for the care Zachary received just before he came home on hospice. We received a copy of a letter that they sent to them asking for complete and total documentation from labs, doctors, etc. so that they can “determine medical necessity” of the procedures and actions taken before he was sent home. I called the hospital to see if they had received their copy and the woman there told me that the information being requested was too voluminous to be faxed and that they had mailed the copies in a box to Cigna. (I believe that this is nothing more than the insurance company trying to hold onto their money for a little while longer……the bill in question was for over $300,000.00.)

God bless the insurance company for feeding me content for this page!

Speaking of God……..we are very grateful to everyone who has been keeping us in their thoughts and prayers….but I do have a favor to ask of you. For now……I will pray for Rebecca, and she will pray for me….the rest of you need to pray for little Kyle and his family. I would consider it a personal favor if you would do that for me.

The other drama that I had this week came from the cell phone company. Not wanting to be outdone by the stupidity of the insurance company, the phone company took me down a road that had me hours away from writing a journal update where I was going to ask everyone to email them a letter telling them how horrible we all thought they were. This is what happened.

Shortly after Zachary died, I called my cell phone provider to have them cancel Zachary’s phone number. They of course informed me that there would be a cancellation fee. I of course informed them that they were certifiably insane if they thought I was going to pay a cancellation fee on the account of my dead son. They very quickly saw the light and agreed that they should waive the fee. All was well and good until my bill came and guess what? They tried to charge me the $175.00 fee! (Idiots.) I called up to complain, and the customer service bimbo apologized and said that she would reverse the charge and call me back within 24 hours to give me the new total on my bill. That return call never came. I waited five days and then decided to give them ONE MORE TRY to fix it……and if they didn’t, I was calling in the cavalry. During that phone call, the new customer service bimbo informed me that the previous one had not forwarded the request onto the proper supervisor, but that she was immediately removing the fee from my account…..and then she gave me the corrected NEW bill amount. (You would think that I have nothing better to do than deal with morons.)

We picked up the urn that Zachary’s cremains will stay in. It is beautiful. The artist did an amazing job………the picture is in the album. You will see two urns….the taller one is the one we are keeping, and the other one is going to my parents. Both have the “pain” and “love” symbols raised on them……one on each side.

We are very grateful to Teri from Connor Moran Children’s Cancer Foundation for finding the artist and coordinating the effort to have these made. The artist is John Wells from the Lighthouse Center For The Arts in Tequesta. www.lighthousearts.org

Scott

Wednesday, February 11, 2009 7:04 PM CST

There are lurkers out there (family members, friends, etc.) who may be SHOCKED by some of the content of this update. I make no apologies for the news that I am about to share with you. I know that many of you have painted a certain mental image of me that doesn’t exactly fit with what I am going to tell you, but my guess is that you will all get over it.

I got a tattoo!

As you know, Rebecca got hers shortly after Zachary’s service. (I posted a picture of it a few weeks ago.) Hers has the banner likes Zachary’s did; only hers reads, “In memory of my Zachary.” Her Japanese symbol is for “son”.

I hadn’t really planned on going through with it, but while my brother-in-law Ian and his wife Kelly were staying with us, he designed one for me. (He is an amazing artist.) I wanted the letter ‘Z’, with both of the symbols that Zachary had “Pain” and “Love” incorporated into it. So, Ian worked his magic and came up with a design that I figured I could live with……forever!

So, if you venture over to the photo album you will see my new tattoo. I got it on Sunday, so I am still getting used to it, but four days later, I have no regrets. Everyone wants to know if it hurt. Well, it sort of feels like a constant scratching while it is being put on. Wait….more like a cat’s scratching……………..while at the same time pouring alcohol on it, or maybe acid……yeah…..a cat (a big one…like a lion or cougar) scratching away with 4” claws………..while some other animal….like a monkey or ape is splashing a mixture of alcohol and acid on the wound. THAT’S what it feels like!

Really it didn’t hurt too badly…..I didn’t even cry……..too much.

If you can’t tell from the picture…it is on my left upper arm….so you don’t see it unless I pull up my shirt sleeve.

Rebecca and I are still struggling with day-to-day life. Most of the time I find myself feeling like I am watching myself from a distance, looking down on some miserable person who has lost his zest for fun living. Don’t get me wrong…there are definitely moments during the day where we have a short laugh……but they don’t last…….and reality has a way of letting you know that things still suck. I wish that I could report that life is getting easier….but tomorrow will be four weeks since Zachary left this world, and we miss him terribly. I tried something different the other day…..I tried to think about all of the things that he used to do that drove me crazy…..you know….typical teenager things. Like never being wrong….having all of the answers……blasting his music, not listening……..etc………..as hard as I tried….I couldn’t get any of those things to ease the pain.

He’s gone.

We miss him.

Scott

Thursday, February 5, 2009 9:55 AM CST

I really haven’t been in a “writing” mood lately, but there is some house cleaning that needs to be done around here, so I decided to take a few moments to give you all an update.

I have had many requests to repost the contact information for the two charities that Rebecca and I had asked that donations be made to in lieu of flowers after Zachary’s passing. I kept forgetting to do that, so here they are:

Quantum House
901 45th Street
West Palm Beach, FL 33407
561-494-0515
www.quantumhouse.org

Connor Moran Children’s Cancer Foundation
825 US Hwy. 1 Suite 200
Jupiter, FL 33477
561-741-1144
www.connormoran.org

These are both wonderful charities that did amazing things for us over the years. I have also had some folks ask about the other charities that are listed in the back of my book. All of the charities that are listed there are deserving of support and assistance from anyone who has the means to do so. At the time of Zachary’s passing we were instructed to select one charity to list in the obituary, we insisted on selecting at least two, because of the many that helped us.

The other house cleaning issue that I needed to address is the web address for the AFJROTC cadet who is selling the t-shirts and DVD’s to help raise money for the scholarship that we are starting. That address is:

http://profile.myspace.com/index.cfm?fuseaction=user.viewProfile&friendID=449666561

There are photos of the shirts and DVD at that page, so please go and check them out.

Other than that, there really isn’t a whole lot to report. I wish I could say that things are getting easier for us, but they are not. A few minutes ago, right before I started to type this entry, I was sitting here looking around, and again, I could not believe how quiet it is in our house now. The silence is almost maddening.

I would give anything to hear his voice again………in fact that was one of our “triggers” for tears the other night. Rebecca and I were driving home from somewhere and we realized that we just don’t have any good recordings of him talking. We have a TiVo recording with some short quotes when he was on the news after driving the Ferrari, but all of our video/voice recordings are from when he was very young. We are even trying to find a good way to save the message he used on his cell phone to let people know he would call them back. (Sounds like desperation to me.)

I guess in my next book, “Everything That You Need to Do BEFORE Your Child Dies of Cancer,” I’ll have to include a chapter about making sure to get good quality video and voice recordings.

Scott

Friday, January 30, 2009 6:25 PM CST

***Tattoo photo in the album!***

Zachary has been gone for just over two weeks now and it doesn’t seem real yet.

Rebecca and I went away for a few days to Tampa to try and decompress from the events of the past few weeks. I’m sure there are many lessons that we will take from our experiences from over the past nine years, but the one lesson for SURE that I learned over in Tampa is that no matter how far you travel, you cannot escape your reality. We could have gone to Alaska for a few days, and all we would have accomplished is freezing our assess off while being sad, while watching whales mate, or swim, or whatever it is that whale watchers see in Alaska. The point is this, Zachary is gone, and no amount of travel, hockey games, Segway tours, or Busch Gardens trips will bring him back. Did we have fun at the hockey game? Yes. The Lightning won and we enjoyed watching the game. Was the Segway tour enjoyable? Yes. Driving around the city on Segways was pretty cool. Did we have fun at Busch Gardens? Yes. Rebecca got to go on some cool roller coasters and we saw some amazing animals. Did we ever stop thinking about losing Zachary or not having him there with us? NO. NO. NO!

We both dreaded coming home, and the one thing that became immediately apparent upon entering the house was the deafening silence that now exists in our home. Once again, we could sell our house, move, and start over again somewhere else….but he wouldn’t be there either, so all we would have accomplished is distancing ourselves from the very people who we rely on so much to keep us sane.

There is no rock big enough to hide under, there is no continent far enough away to make us forget our grief, there are no words soothing enough to hasten the healing of our hearts. While Rebecca and I were visiting with folks paying their respects at the Church on Saturday there were several dads of children who have lost their battles with cancer who were having a VERY tough time……lots of tears were shed. At the time, I remember thinking that the tears were from having to face the demons that have haunted them since losing their children……….now that I am two weeks into this new nightmare, I am beginning to wonder if maybe they were shedding tears for us….in anticipation of what we were facing as parents who had just lost a child. Maybe it was a combination of both, I don’t know……….but I will never forget the look on their faces.

The Air Force Junior ROTC did an amazing job at Zachary’s service. In addition to everything that they did for us that day, they have put together a really nice t-shirt that they are selling to help raise funds for some of our expenses. On the front it reads: “JBHS Remembers” (JBHS stands for Jensen Beach High School.) On the back is a full color photo of Zachary with the words, “1994 – 2009” and “A Celebration of Zachary’s Life.” On the right sleeve is the Japanese symbol for the word ‘pain’ (just like the tattoo that Zachary had on his right arm), and on the left sleeve is the symbol for the word ‘love’, along with the words, “In Memory of Too Many”, (just like the tattoo that he had on his left arm.) The cadet who is in charge of organizing the t-shirt drive is putting together a web page where there will be photos and the opportunity to order them. As soon as I get that web page address, I will post it on here for anyone who is interested in getting a shirt.

They will also be selling the musical slide show that we played at Zachary’s service. It runs about 16 minutes, has four songs (guaranteed to make you cry) and a couple hundred pictures.

Rebecca and I have been very blessed with financial assistance from a few charities and many family members and friends. The kindness of those folks afforded me the opportunity to be home with Zachary for the past two months of his life. Now that I will be returning to work on Sunday, we have decided to use the proceeds from the AFJROTC efforts to fund a scholarship in Zachary’s name. The AFJROTC announced at Zachary’s service that they have created an annual award to be given to one cadet each year who demonstrates perseverance, integrity, determination and inspiration like Zachary did during his battle with cancer. In addition to that award we are working to create the scholarship that will be awarded to one senior each year. There will probably be an essay, with the winner receiving the scholarship at the annual awards ceremony. Helping to create a legacy in Zachary’s name at his high school is definitely giving us a glimpse of happiness in an otherwise sea of turmoil and despair. Our goal is to raise enough money to fund the scholarship for the first few years, after that Rebecca and I will gladly keep it going to help preserve his legacy in this community. The first batch of shirts already sold out, so we are excited that we will be able to start the program this year.

The other news that I have to report is that Rebecca got her tattoo last weekend before we left for Tampa. (Yes, I will post a photo in the album when I get a chance.) She got “In Memory of My Zachary” with the Japanese symbol for the word “son”. The tattoo is on her left hip, and it looks really good.

Scott

Sunday, January 25, 2009 2:06 PM CST

Yesterday’s service went very well…..at least logistically. Emotionally, not so much.

There is a certain finality that a memorial service for your child has. It’s not like you go through the day thinking, “Maybe this isn’t real, maybe we can still get him back,” but the surreal mindset that we seemed to be existing in was definitely shattered at that ceremony.

Our pastor from the church that we used to attend was kind enough to travel back across the state from his new job to perform our service. He knew Zachary well, and that was important to us.

Rebecca worked hard on the music slide show, and if your rating system includes the number of people who cry during a show, then I would say that it got four stars, two thumbs up, and whatever accolades can be mentioned. Our good friend Kathy Charlton was kind enough (and brave enough) to read the eulogy that I had written, and she did an amazing job. For those of you who could not attend, here is my eulogy:

“Nothing in my 45 years on this Earth prepared me for having to write my son’s eulogy. Parents are supposed to predecease their children, of that, I am quite sure.

Zachary was diagnosed with cancer on March 16, 2000, almost nine years ago. During that time he endured multiple surgeries, treatments, procedures, tests, hospital stays, and exams that encompassed over 60% of his life. Through it all he fought the cancer and found a way to forge on and beat the odds time and time again. Author Anais Nin said, “People living deeply have no fear of death.” Make no mistake about it, Zachary LIVED deeply. He enjoyed some amazing experiences over the past nine years, including countless family gatherings where he thoroughly enjoyed his time with his cousins, aunts, uncles and grandparents, his time spent with other children who were fighting cancer where he knew that he fit in and didn’t have to explain what was going on in his mind, his time in school where he got to feel “normal” and be around his friends, the many years that he played recreational soccer and then eventually playing soccer for his middle school team where he even scored a goal, bowling with his friends on the Saturday morning league, and then going on to make the high school bowling team where he got to compete in several matches, and participating in the Air Force R.O.T.C. where he made many new friends and got to indulge in his passion for the air force and flying, all while getting chemotherapy and other treatments.

Outside of the “normal” life experiences that one would expect to hear about, Zachary has also enjoyed an amazing litany of special times including several trips to Boggy Creek Camp for seriously ill children, both for weeklong summer stays and for cancer family weekends, a private tour of the Cape Canaveral Space Center, a Children’s Wish Foundation Disney trip that included a cruise and several days at the Orlando parks, private feedings at Sea World with the dolphins, swimming with the dolphins in the Florida Keys, countless family outings with both Connor Moran Children’s Cancer Foundation and the Pediatric Oncology Support Team, flying in a gold-plated private jet to NYC for treatment, flying in a small Cessna plane on a discovery flight where Zachary got to fly the plane and do up and down roller coaster maneuvers which turned me several shades of green, attending several hockey games and getting to meet and hang out with some of the players, driving a convertible Ferrari at over 70mph around a race track, being selected as the Pilot for a Day by Andrews Air Force base in Washington, D.C., and none of us will ever forget his tour of the White House where he set off the radiation alarm as he was entering the building after which he was promptly escorted by the secret service to a room where they sorted out that he was a cancer patient and NOT a terrorist.

I could go on and on about all of the incredible life experiences that he was blessed with, but none of them can compare to the relationships that he forged with family and friends and the special knack that he had for connecting with young children. As you look around this room at the size and diversity of the group gathered here today it becomes immediately apparent that Zachary touched many lives and that he left a lasting impression that has had a special impact on this community.

I have thought long and hard about this, and while I am willing to concede that the cancer took his life, I will never believe for one moment that the disease robbed him of his internal shining light that shone brightly through thick and thin and cast rays of hope upon so many who got to know him. As hard as it is to look past losing Zachary, all of us need to recognize how he influenced our lives, showed us how to face adversity, but most of all, how he showed us that by living DEEPLY, he will transcend death and live on in our hearts and minds forever!

Thank you all for coming today to help us celebrate Zachary’s life. Thank you for being there for us over the years, to hold our hands, wipe our tears, lift us up, and to fill our lives with memories that we will always cherish. Rebecca and I would like to extend a special mention of thanks to Pastor Dale Kent and his wife Dorie for traveling across the state to Jensen Beach to be here for us today.”

The Air Force Junior ROTC from the high school did an outstanding job with their managing of the parking lot, ushering, setting up and tearing down, and their flag presentation at the end of the service was simple spectacular. Sergeant Durrell Johnson from the high school made a touching speech, followed by a detailed explanation of the flag folding ceremony. When the cadet knelt down to present the flag to Rebecca after it had been perfectly folded, I don’t think there were too many dry eyes in the house.

A late addition to the program was the high school jubilates who got onto the stage and sang “Lean on Me” near the end of the service. Once again, there were not too many dry eyes in that room.

A few days before the service we decided to hire a company to video tape the events of the day, and good friends of ours from Tampa were kind enough to purchase that service for us, so we will have a recording of the entire service, along with many personalized messages that folks were leaving to us. I’m sure it will be difficult to watch the video, but we have not seen any of the private messages yet, because we were in the receiving line at that time, so it will be special to see and hear what people had to say.

Rebecca and I are going away for a few days together to decompress a little. I don’t know how therapeutic it will be, but we need to try something.

All of our family who were kind enough to travel in are leaving today or early tomorrow, so we will need to start figuring out how to live life without our precious Zachary in it.

Scott

Wednesday, January 21, 2009 3:20 PM CST

If time heals all wounds, then God better plan on letting me live to be about 273 years of age, because 6 days and 1 hour after Zachary left us, things have NOT gotten any easier.

I do have one tidbit of advice for any parents who are unfortunate enough to find themselves in this position……there is safety in numbers. Do not go anywhere alone and do not let others leave you alone. Stay in a group whenever possible. Being left alone is nothing but a recipe for disaster.

Among the various pamphlets that hospice gave to us was one explaining some of the things that happen at the end of one’s life. One of the more significant issues that we found ourselves confronting was the issue of giving Zachary permission to let go, and move on. We had been told that many patients, especially children who tend to worry about their parents, will hold on for prolonged periods of time, because they have unfinished business, or they simply don’t want to let go. We had discussed this Wednesday night after he had entered a state of being unresponsive, and all of us agreed that we would tell Zachary that he could move on, and that we would be OK.

Thursday, the day he died, three of us had completed that unpleasant task. Rebecca was the last one who needed to find the strength to let him go. I was in the room with her when she was finishing up telling Zachary that we would be OK and that there were many loving folks waiting for him on the other side. As soon as she finished “letting him go”, he stopped breathing. We both are now true believers in that part of the process. Zachary needed to hear from us (and her specifically) that we would be able to go on, and that he could let go. The timing was extraordinary and left a lasting impression on both of us.

I have shared that moment with all of you so that you can better understand Zachary’s passing and hopefully find some closure for yourselves. Zachary fought an amazing battle for many, many years, and until his last breath was taken, he was still looking out for his mommy, holding onto life until he heard from her that it was going to be OK.

He was truly a special young man.

The plans for Saturday’s service continue to come together. We are hoping that the celebration of his life will be special. Immediately following the service, Rebecca and I will be visiting with family and some out of town friends at a private location. We are asking that you please respect our wishes to allow us the remainder of Saturday (following the service) to have that private time.

The other issue that I wanted to bring to everyone’s attention was that of life…..after death. For those of you who perhaps doubt what follows life on Earth, I can assure you that I now have definitive proof that Zachary is out there somewhere, looking down on us.

We were proofreading the pamphlet for Saturday’s service yesterday and found a single typo. On four pages of text and photos, there was just that one typo. It appeared in the poem that Zachary’s uncle Ian had selected for the back of the pamphlet. I won’t write the entire poem on here, but the last four lines are supposed to read:

“Perhaps my time seemed all too brief-
Don’t shorten yours with undue grief.
Be not burdened with tears of sorrow,
Enjoy the sunshine of the morrow.”

That was how it was SUPPOSED to read. My theory is that Zachary, in typical “Zachary” form, decided to try and inject some humor into the service by making the typesetter mistype one of the words. In keeping with Zachary’s proclivity to Hooter’s girls, and girls in general, this is the way the proof read when we received it:

“Perhaps my time seemed all too brief-
Don’t shorten yours with undue grief.
Be not burdened with teats of sorrow,
Enjoy the sunshine of the morrow.”

I consider this definitive proof that he is out there, still influencing things around us. (I have to admit that I was tempted to leave it alone, if for no other reason than to see how many folks would A). Catch the mistake, and then B). Tell us about it.)

Scott

P.S. As long as Zman keeps giving me things to write about, I will not abandon my journal entries.

P.S.S. Thank you to everyone for pushing us up and over the 900,000 mark for visitors to this page!

Saturday, January 17, 2009 8:52 PM CST

If you haven’t read my entry from 1/15, then I suggest you do so now.

I am writing this entry 2 days and 7 hours after Zachary slipped away from us. Not having him with us in the physical sense is surreal. The void is unimaginable. I have been trying to focus on the many wonderful moments that we shared, but invariably I find myself remembering those last moments when we lost him and utter feeling of helplessness as I tried to absorb the knowledge that he was no longer with us.

I think that during the past 9 years I was living a dual existence. Not a day passed by that I didn’t envision losing the battle and having to say goodbye to my son….but at the same time……I never believed that we would lose him and I never fully appreciated how incredibly difficult it would be to become one of “those” families.

A family who had lost their child to cancer.

We have been reading the many wonderful guest book entries that you all have been leaving us, and we are very grateful for the kind sentiments. Collette wrote that in one day, “There were guest book entries from 38 states and 8 different countries.” We continue to be humbled by the ever increasing numbers that keep appearing in the guest book.

There was a very nice newspaper article in our local paper today (Stuart News @ www.tcpalm.com) about Zachary and his battle, and last night NBC did a piece about Zachary on their 11pm news.

http://www.wptv.com/mediacenter/local.aspx?videoId=10302@wptv.dayport.com&navCatId=3

The only part of that story that was incorrect was the part about the “viewing.” There will be no viewing. There will be two hours of visitation from 10:00am – 12:00pm on Saturday, January 24, 2009 at the church listed below. The service celebrating Zachary’s life will follow at that same location at 12:30pm. We are home all week, so if you live in this area and would like to stop by to visit with us, we love having the company and enjoy the visits.

Everyone who would like to attend on Saturday is welcome. If you knew Zachary, or one of us, of if you found our web page and feel like you are part of our extended Cancer Sucks Club family, then you are welcome to join us.

First Baptist Church of Jensen Beach
1400 NE Jensen Beach Blvd.
Jensen Beach, FL 34957
772-334-2202

Scott

Thursday, January 15, 2009 3:20 PM CST

At 2:45pm today we received our final miracle, Zachary passed away peacefully with Rebecca, Ian, Kelly and I by his side. After two days of him not being able to communicate with us, he finally escaped the cancer that has dogged him for almost nine years. We know from friends who have walked this road before us that it could have lingered on for days or even weeks, but we were spared that additional torture.

There will be visitation and a memorial service Saturday January 24, 2009 at the First Baptist Church on Jensen Beach Blvd. in Jensen Beach. We are working on those arrangements, but more than likely we will have a morning visitation (10am – 12pm) with a service celebrating Zachary’s life to follow from approx. 12:30pm – 1:30pm.

In his final act of “defiance” and of doing things his way, he left us with the typical “Zachary” smirk on his face, almost as if to say, “I know something that you don’t know!”

When all is said and done I am certain of only one thing right now. He is in a MUCH better place!

Scott

In lieu of flowers, contributions may be made in Zachary's memory to one of the following charities:

Connor Moran Children's Cancer Foundation
825 US Hwy 1, Suite 200
Jupiter, FL 33477
561-741-1144
www.connormoran.org

Quantum House
901 45th Street
West Palm Beach, FL 33407
561-494-0515
www.quantumhouse.org

Wednesday, January 14, 2009 8:00 PM CST

I know that everyone is still celebrating with us in our victory from yesterday with the platelets, and because of that, it breaks my heart to rain on the parade of excitement that we have been reading in the guest book.

But.

But today is a new day and unfortunately things have changed drastically since yesterday. Zachary has deteriorated quite a bit, and he is now in a state that they refer to as “terminal restlessness.” He moves his hands around, grabs at his IV lines, and removes his oxygen line quite often. All of that would be bad enough, but the hardest part for me by far is seeing him try to speak. He is out of breath, and unable to form coherent thoughts or words. He occasionally opens his eyes, and maybe even recognizes some of us, but then he quickly closes them and is restless again.

This is torture. As a parent, you can’t help but think that your child needs something when they make the effort to communicate. Is he in pain? Does he need something to make him more comfortable? We cannot tell…..and that my friends suck. I would die a thousand painful deaths to save him from having to go through this stage of the illness.

There are no words that adequately describe the agonizing sensation that we are experiencing while sitting with him, unable to do anything other than sit there, and hold his hand or rub lotion on him.

We now have hospice nurses around the clock…..a move that we decided on yesterday….as fate would have it. They are proving to be VERY helpful, as we enter this last tortuous stage of our journey. I know that we will be relying on their expertise more and more as things progress.

Yesterday’s victory seems like a lifetime ago. It bought us 48 hours of comfort for him, where he doesn’t have to taste blood in his mouth. Now that he has changed though, the transfusions are over with. Prolonging his life now would not accomplish anything for him. He no longer has any quality of life….and that started today. I never realized that we would be able to draw a line in the sand where we could so definitively define when that moment arrived……but we can.

For almost nine years we have worked tirelessly to fight this monster. We have defied the odds over and over again and found ways to squeeze out many more years of quality time with Zachary than anyone ever dreamed we could get……and now, for the first time in nine years, I find myself praying for him to find peace quickly.

How can you want two things that are so diametrically opposed to each other?

1). More time with my son.
2). A quick and peaceful end to his suffering.

In 45 years of life I cannot remember a time when I was more tired, sad, angry, frustrated, scared or heartbroken than I am right now. Thankfully we continue to be blessed with family and friends who sit with us, cry with us, lift us up, and take care of us.

I have always had an immense amount of admiration for the parents who have walked this path before us. Now that we are knee deep in this misery, I am further impressed that these folks can walk, talk, work, eat, breathe and live….after enduring this nightmare.

Pray for peace for Zachary.
Pray for strength for my family.
Pray.

Scott

Tuesday, January 13, 2009 6:14 PM CST

Last night we discussed with Zachary the platelet issue and whether or not he wanted to go on Tuesday, in his ever-weakening state. He told us that he did want to still go, because, “I need them.” We went to bed with the plan in place to get up early this morning and head out for another transfusion. In the back of my mind, I knew that Tuesday morning would be a challenge.

I woke up at about 6:15am and went in to sleep in the chair next to him. At 7:30am Rebecca came in to see if we were getting up, and both of us knew pretty quickly that it was a mistake to have him travel. As hard as the discussion was a week ago when I had to ask Zachary whether or not he wanted to continue with blood transfusions, the conversation this morning was way more difficult. I had to come up with a way for Zachary to pass on leaving the house, without him feeling like he was giving up. I said the only thing that came to my mind, “Do you want to rest today, and I’ll try ONE more time to get them to bring the platelets here, so you don’t have to leave the house?” He immediately nodded, with an air of relief that broke my heart. I sat their sobbing (again) thinking to myself that I had just set in motion a cycle of events that would probably have to be repeated the next day, and the day after that, until his body finally quit on him, unable to sustain itself because of his low counts.

After about 10 minutes of feeling sorry for myself, I realized that I had just made a promise to my son that I would try yet again to have the transfusions take place here at home. At that moment it dawned on me that I had an obligation to my son to either make it happen, or to get the name of the organization that was at the core of the denial for what we needed.

It was time to play tag!

The good news going into this game of tag was that I knew that I was NOT “it.” The tricky part was going to be narrowing down the list of organizations that were pointing their finger at each other to find who was indeed “it.”

There were three organizations in play, so I started with the one that supplies the product, but that led to a dead end, so I put them aside and skipped over to the one that receives the product. I need them onboard to allow the product to be picked up by the third organization. They were the ones who I needed to arrange the actual transfusion. When playing tag with large companies, it has always been my experience that if you start at the TOP of the food chain, you have a much better chance of NOT wasting your time. You can tag a lower ranked employee, but once they start telling you “no”, you will find yourself working your way up the ladder until you get to where the buck stops. I called and asked for the CEO’s office. His secretary got on the phone and listened patiently as I explained my dilemma. “Hi, my name is Scott Finestone and I am trying to confirm that your organization is the one that is unable to help me get blood products for my dying son at home. I just wanted to confirm that fact, before I call my good friend who is the VP of operations for the local TV station.” Surprisingly (not), that got quite the reaction. She asked me to give her a few minutes while she made some calls. Within about 15 minutes I heard back from their person in charge of blood products, and she told me that they were onboard with the idea, but that the OTHER organization was not willing to transfuse the product here in our home.

“OK….then you’ve obviously played tag before. Cool. You’ve just tagged the other guy. I get back to you.”

I called my contact at the organization that transfuses the product, and he assured me that his people had been working feverishly on this issue, and that they were NOW WILLING TO DO IT, however he was being told that the OTHER organization was not willing to release the product. “COOL…….someone else who likes to play tag.”

At this point in the morning I had to consult my Official Tag Rule Book. I wasn’t sure, but I remembered from 3rd grade that usually there are no “tag backs,” meaning that if Sue tagged John, John could NOT then tag Sue back……he had to find someone else. After careful research I was indeed able to confirm that there are NO tag backs. Unfortunately in this game of tag, there were really only two players left, and they seemed hell bent on tagging the $#%& out of each other. I told my contact that I would get back to him. I called back player #1 and informed her that she had indeed been tagged by the other guys as the one who was unwilling to part with the product. She assured me that her organization had discussed this at length, and they had agreed that they would bypass the normal channels and make the product available if the OTHER GUYS would transfuse it.

Normally I would enjoy playing this game all day long, going back and forth with “he said, she said” games, but seeing as Zachary was in the next room, with blood in his mouth, uncomfortable, bruising all over, I decided to cut to the chase. I said, “Here is the cell phone number for my contact. You need to call him, because he is telling me that his people have agreed to get onboard with this, only they can’t get the product because you guys won’t release it.” She took down the phone number…..and the waiting game began.

I didn’t have to wait long. My contact called me back within 30 minutes to inform me that he was on his way with another nurse and that they were picking up the platelets and would be here within 30 minutes.

About 20 minutes later we were blessed with three nurses and two bags of glorious platelets. Less than 45 minutes after that, Zachary was two bags of platelets fuller. As for the blood pressure saga, we checked his pressure before starting and it was 109/84. (Much better than the 150/110 that we have been seeing after dragging him out to the transfusion center.) During the entire transfusion today, his pressure NEVER WENT ANY HIGHER!!!

I hate people who say, “I told you so,” so I won’t say it. (Wink, wink.)

Curiously enough, the planet didn’t implode after we gave him the platelets, the oceans didn’t empty, locusts didn’t swarm, there was no plague of frogs, and nothing else bizarre happened. He laid there, relaxed, and got his transfusion.

On a serious note, I would like to thank everyone who worked tirelessly to make this happen. I don’t know how much longer we will be able to benefit from the service, but make no mistake, mountains were moved today, and we benefited from the colossal efforts of some wonderful, caring people! It is my sincere hope that families who will have to follow in our footsteps will benefit from the efforts that we have made to get this to happen.

As I am typing this entry Zachary is enjoying watching Eric (my friend of 35 years) play the Harry Potter game on the PS2 in his bedroom. Zachary is not strong enough to play anymore, but he now enjoys watching Eric try to navigate through the levels….a ritual that has taken place almost everyday for the past couple of weeks. Sometimes his eyes will close, but if Eric stops playing, Zachary will open his eyes and ask him to keep going.

By the way, I almost called on all of you lurkers and faithful followers to help with an email campaign on behalf of our efforts to get transfusions at home. I was going to give out their email addresses and have everyone send pleas for help….thankfully we didn’t have to do that. We’re now getting between 3,000 and 4,000 hits each day, so I’m guessing that I could have probably gotten at least 500 unique emailers to send a message. (I’ll just stuff that ace up my sleeve and save it for a rainy day.)

Scott

Sunday, January 11, 2009 8:03 PM CST

The benefit today was a big success. We are very grateful to everyone who worked to make it happen, (Connor Moran Children’s Cancer Foundation & the volunteers) and to the many folks who came out to support us. I was able to make an appearance for about 30 minutes in the morning, and then Rebecca was able to get over for about an hour after I got home. We saw many friends and many new faces from the community.

Zachary has been pretty much bed-ridden for the past several days. He cannot stand up at all, so when he wants to come out to the family room, we have to either carry him, or lift him up and put him in the wheelchair. He is definitely weaker and sleeping more, but thankfully he is still enjoying visits with friends. He watched the Steelers football game tonight (they won!) and had a parade of friends coming and going. His appetite has been steadily decreasing, with several days going by without him eating anything. We don’t weigh him anymore, so I can’t imagine what his weight is now.

Tomorrow we will have his blood counts checked, and then Tuesday he will need platelets. Today is day #2 since getting them on Friday, and he is already having some bleeding issues in his mouth again. We are still working with hospice to try and get past the red tape that is preventing us from having transfusions here at home. In addition to the strain on Zachary’s body by having to transport him to the hospital, we now are pretty certain that his blood pressure issues could be avoided by not having to move him from the house for those transfusions. The last several times that he has gotten transfusions, his pressure has been way too high. Even before they start giving him blood or platelets, they will make mention of how high his pressure is, and that they will need to slow down the transfusion because of it. That causes us to be there longer, which leaves him having to stay in an uncomfortable bed for hours at a time. The nurses who come to the house checked his pressure the other day and at home, in his bed, his pressure was fine. I rechecked it today, just to see if it was an anomaly, and it wasn’t…..his pressure was just fine. It appears as though the act of moving him is causing a dramatic rise in his pressure, which has been leading to the problems at the hospital when they start the transfusions. (Another GOOD reason for them to hasten their efforts in getting us blood and platelets at the house.) I spoke with the director the other day and gave him the same information that I have been giving our nurses………there are many centers around the country that have been doing transfusions at the patient’s home for years, because they learned years ago that making the kids travel DOES NOT WORK!

It saddens me that the clock is ticking on our time with Zachary and that we haven’t been able to make any headway on this issue. We recognize and appreciate that there are caring people out there working on making this happen, but at the same time, they are sitting in comfortable offices, living their lives with their families, while Zachary is fighting each and every day for good moments while the cancer eats away at him. Zachary’s platelets are probably only lasting about 48 hours now…which means that he should probably be getting them three days a week. The problem with that is they no longer want to give him platelets and blood in the same visit because of his blood pressure issues…………..a classic catch 22. How do you solve it?

Transfuse him at home….keep him comfortable….give him the opportunity to enjoy his last days AT HOME, with his family and friends.

On a lighter note……Zachary has NOT lost his sense of humor. In his weakened state……barely able to talk most of the day….whispering to us when he needs something…………..he asked to be moved to the family room this morning so he could visit with us all at once. My brother-in-law Ian and I were getting him dressed, so he was lying flat on his bed, staring up at the fan and light on his ceiling. With a perfectly straight face and expression, he looked at Ian and me and said, “I see a white light.” (HE WAS STARING AT THE CEILING LIGHT). He then got a wry smile on his face, and then laughed when I told him he was the front-runner for the 2009 inappropriate joke award. That is classic Zachary! Keeping things light, staying positive, and trying to keep everyone around him happy and comfortable.

Scott

Wednesday, January 7, 2009 12:27 AM CST

Since Sunday’s update, Zachary has enjoyed a few great days. He has been awake quite a bit, watching TV, movies, playing on the Wii, watching others play on the Wii, playing and watching the PS2, and visiting. We don’t know what is causing this newfound energy, but we are certainly enjoying it!

Zachary got platelets on Tuesday, and he definitely needed them. He now has bruising all over his body……thankfully it is causing him no discomfort. His appetite remains spotty at best, but he does drink during the day, and as I just wrote…..he has much more energy than he did last week.

Today we are getting blood, his HGB was stupid low, but he is having issues with his blood pressure being too high, so that limits us as to how many transfusions we can get in one day. In the old days, we would get two units of platelets and one unit of blood all in one sitting; now we cannot do that. He is calling the shots in regards to transfusions now, we make sure that he wants to travel the 10 minutes to the hospital and stay there for a few hours before we commit to moving him. (There is no quit in our son.)
My brother-in-law Ian who was with us all of last week ended up staying with us, and he has been a huge help. His wife Kelly had to take their son back to Georgia on Sunday to get the kids ready for school, but she was able to make arrangements over the past few days to have family help her out, so she is coming back down today.

There are a few folks who I would like to recognize in the journal for their continued support………..the Weekman family has been very caring and helpful. They come over almost every day and sit with Zachary, playing games and visiting, and Jennifer has played a huge part in coordinating our meals. The other half of that equation is the Flutie family. Susan has been working tirelessly with Jennifer to keeps us fat and happy and they too come over or check in each and every day, to make sure we are OK. Both of these families have been life savers for us, allowing us to breathe and relax by taking time to sit with Zachary. They other special mention goes out to Zachary’s many friends who are still visiting him, even now that school is back in session. Three of Zachary’s friends in particular have gone above and beyond to sit with Zachary and cheer him up almost every single day. Emma, her twin brother Ronnie, and their older sister Megan have all been great to us. There are too many families who have cooked or provided meals for us to list them all in one journal entry…..but we are keeping track so that we can recognize their efforts when things calm down. We are also blessed with several of the cancer families who have been keeping tabs on us and making sure that we are not deviating from the rules and bylaws that were written in stone tablets by the Cancer Sucks Club many years ago.

There are many charities that have been offering to help, and one in particular is having a fund raiser this weekend for us. Connor Moran Children’s Cancer Foundation is putting on a fund raiser at Wahoo’s Restaurant & Marina this Sunday from 11am – 2pm. They are tying the benefit in with the Stuart Boat Show, so anyone who buys a ticket for the benefit ($25.00) gets a buffet and admission to the boat show. If you go to the web page listed below, there are details under the “What’s Happening” link.

www.connormoran.org

We are very grateful for their efforts!
Scott

Sunday, January 4, 2009 11:04 PM CST

Every stage of our adventure with cancer has provided ups and downs like a roller coaster, so I guess that I shouldn’t be surprised that even now, as we near the end of our journey, we are still riding the waves up and down.

Friday was a rough day. Zachary was wiped out from going to get platelets and blood, and he really didn’t have too many lucid moments to enjoy. Saturday wasn’t much better. Most of the day he was in and out of sleep, restful, but not communicating. Then, at about 7pm he surprised us by waking up and asking for a pear to eat. (His first food of any kind in three days.) He ended up having a pretty good evening and an uneventful night.

This morning I relieved the night nurse at around 7:30am, and he was wide awake. I read the paper in his room as he watched TV ate some bananas and pears and even mentioned that he wanted to go to the mall today. (Something that I knew would probably not happen.) He alternated between watching TV and napping for a couple more hours, and then he sat up and said, “I want to go out to the family room and play you a game on the Wii.”

Not being one to spoil a “moment,” I woke everyone else up and said, “Hey everyone, we’re going to be playing on the Wii, you might want to come out here and enjoy the show.”

Zachary played one game, and then he relaxed a bit and said he just wanted to watch us play. Some friends came over, and for about an hour he was visiting and having fun. After that he got a little bit tired and asked to go back into his room. Once there, he visited with a variety of folks who were dropping by to see us, carrying on conversations, watching TV, and playing video games. All in all, he had a great day.

After the past two days, we didn’t really expect to get another day like today, so we were pleasantly surprised.

Zachary’s eyes continue to be a problem for him. The right eye is again swollen and causing some discomfort, and even with the steroid being given around the clock, we can’t seem to get ahead of that issue. Tonight we noticed a horrific looking rash that has developed on his torso, it may be Petechiae, we won’t know until we have the nurses take a look at it. The bumps on his head continue to grow, but thankfully he has not been complaining about them.

The most difficult part of today came in the form of a gut wrenching conversation that I had with Zachary when he was taking a break from all of the visitors. By far, this was the most challenging and emotional thing that I have ever had to face in my lifetime….it left me drained both physically and emotionally.

Zachary asked me about getting back on treatments for his cancer. I had to remind him that his bone marrow isn’t working and that was why we were getting so many transfusions……and that without a working marrow we weren’t eligible for any treatments. He didn’t seem to recall the conversation that he had with his oncologist before coming home last month when he was told that they had no other treatment options to offer him. I used our discussion as a means to talk with him about more transfusions and to see what his thoughts were. He immediately made mention of the fact that without platelets, he thought that he would only live for about another week. I told him that there were no definite answers regarding that, but that he may be correct. I also told him that we didn’t want to put him through anything else that was too hard on him. (I reminded him of how hard it was for him on Friday…..driving to the hospital for platelets and blood.)

Without hesitation he told me that he wanted to keep getting transfusions, and that he could handle it!

Zachary has always been….and will always be a fighter. He only possesses and knows of one mindset……..FIGHT, FIGHT, FIGHT! And when things get so bad that it looks like there is no way out…FIGHT SOME MORE!

Today was a great day. We may get another 50 days like this, we may get none. Tomorrow he may be too weak to even consider taking him for platelets on Tuesday………we don’t know. If the rash on his torso is Petechiae then the transfusions are only lasting for a day or two at most. There is no way that he can handle traveling for transfusions 4 days a week…it would be torture for him. If we were able to get it done here at home (like they are doing everywhere else around the country), then it might give him more days like today. We will never know. We have been given NO hope of that happening in time for us to benefit from the wisdom and insight of the many facilities around the state and country that have seen the light of day and put into place the necessary protocols to allow children EVERY opportunity to live….UNTIL they die.

Today was a gift from God. We are grateful.

The quote “Tomorrow is promised to no one.” Is credited to Walter Peyton. (I know that Clint Eastwood said it in the movie “In The Line of Fire.”) We don’t know what tomorrow will bring, but we will do our best to face it with passion and courage.

Zachary knows that he is dying. Today is the first day that he has vocalized that realization. In typical Zachary form, he cracked a joke about it. He and I were in the middle of our conversation about blood, I was sobbing, blowing my nose and wiping my eyes, and in the middle of that special moment……he blasted out a huge fart. I tried to lighten the moment by saying, “You shouldn’t be starting a competition that you DON’T want to lose.” His response……….”Hey, I’m a dying man; I get to do what I want!”

He knows.

It pains me beyond consolation that he has to deal with those demons. Every time I think about him having to face his own passing, I am saddened and devastated to where it feels like someone is slowly pushing a dagger into my belly and turning it slowly as they go.

My instinct is to protect him from harm……..I cannot stop the cancer.
My instinct is to calm his fears and anxiety…..I cannot suck the realization of what is happening out of his head.

He is still stoic and strong and fighting like the ninja warrior who we asked him to become almost nine years ago when he was first diagnosed.

He only knows how to fight.

This is torture.

Scott

Friday, January 2, 2009 9:53 PM CST

I sincerely hope that my update from yesterday has put to rest the debate (if you want to call it that) over our use of blood transfusions for Zachary. If Dr. MacArthur’s comment were not enough for you, we received a phone call last night from our treating doctor in Philadelphia who wanted to check in with us. After several minutes of updating her with everything that has transpired over the past several weeks, we got around to the topic of blood and platelet transfusions. She immediately asked if we were getting them at home. We are not. Our local hospice does not yet have the protocols in place to handle blood products being transfused in the home. If you speak with local doctors and nurses, they will confirm that they have never heard of such a thing.

Our doctor in Philly informed me that several years ago they realized that the system they were using which required patients to travel to the hospital for transfusions….was NOT WORKING!!! One of their oncologists took it upon herself to learn more about pediatric palliative and hospice care, and she helped develop a program that is not only being used throughout Pennsylvania now, it has international recognition. Our doctor went on to inform me that they use palliative radiation for children like Zachary, to relieve pain and stave off swelling, like in his eyes. Dr. MacArthur also uses palliative radiation in some cases. Zachary could have had that done while we were still in the hospital, but our local team didn’t know enough about that treatment, and it didn’t happen. In the long run, it probably wouldn’t have changed how long he will live, but it could have saved us from battling the swelling and pain with steroids. Zachary’s #1 complaint remains to be the pain in his eyes. He has suffered with double vision since the left eye started bulging out 6 weeks ago. The steroids have helped to control the swelling, but the radiation could have addressed that issue to where we wouldn’t have had to deal with it.

There is no going backwards in time….no Monday morning quarterbacking……..no regrets. The words that I am writing now have one purpose…and one purpose only…….to help the families who follow in our footsteps. We know that there is a better way to help children LIVE, until they die. I have now spoken with doctors and specialists in three different cities, and the message from ALL of them is quite clear. “Pediatric hospice is completely different than adult hospice, and any attempt to create a program for children, based on the adult model, would be grossly unfair to the children and their families!”

We are working closely with our local doctor to help her get the answers to this puzzle. There are apparently several successful programs around the country to tap into, so we now have a purpose that will carry us forward long after our battle ends.

Speaking of that…….there is no crystal ball for predicting how much time we have. I have already written about how some days we feel like we are close to losing Zachary, and other days we feel like he has many weeks left of fight in him. Sadly, today was not a good day. We had a tough time getting him to the hospital for blood and platelets. In fact, today may very well have been our last such outing. Let me assure you that if we do indeed arrive at that decision, it will in NO way be based on the controversy that took place here over the past week. If we were able to get the transfusions done here at home, like they are doing just about everywhere else, then we would do it. Platelets especially! They keep him from bruising and bleeding, both comfort issues for him and us. I do not want to go into details, but before getting platelets this morning, Zachary had some bleeding issues that we would rather have had him equipped to avoid.

So, as I was saying…..we will decide this weekend, but unless he has some miraculous turnaround, we will not subject him to anymore trips to the hospital. He has not eaten in two days, and that coupled with the progression of his disease has him in a much weakened state. He only had a few moments of lucidity today sprinkled in among vast amounts of sleep. Our #1 goal remains keeping him comfortable and pain-free………I believe that we are still doing an excellent job of that.

As you read this update, I would ask that you take a deep breath and pause before signing our guest book with any comment that is less than supportive. Our dear friend Kathy made an excellent point in her journal entry the other day….she postulated that some folks treat these pages like reality TV.

This is NOT a reality TV show.
This is our son.
This is our life.
This is our nightmare.

I have always used these journal updates as a means to staying sane. (Failing miserably on a daily basis.) This is my therapy…writing about our ups and downs. Some of you, (I hope many) have enjoyed or benefited from my candor, sarcasm, and very odd sense of humor. Beyond that though, everyone needs to recognize that Rebecca and I truly value having so many people from across the country and around the world keeping us in their thoughts and prayers. That has always been an integral part of the driving force that has helped to keep us moving forward while we’ve fought Zachary’s cancer.

But.
BUT!........That fact should never be confused with an open invitation to dictate to us how we should care for our dying son! Advice about treatment options, soothing techniques, palliative care, grief counseling, prayers, etc…..are all fine and appreciated…………heck, I wrote a book about how to deal with this crap……..but there is a line that should NOT be crossed.

If you are unable to see or recognize that line, then simply write something like…..”We’re thinking of you,” or “Our prayers are with you,” or “To what address can we send you a check for $10,000.00?”, or something along those lines.

I don’t want nor need any more drama than we already have going on. I spent more time crying and blowing my nose today than I care to remember. It has NOT been a fun day. Seeing him in this state is torture. It is a very real indication that things are changing, and not for the better. Seeing Rebecca sobbing because she witnessed him restless when he should be sleeping comfortably is very depressing for me.

I am guy.
Guys are fixers.
I cannot fix this.

Scott

Thursday, January 1, 2009 1:40 PM CST

I wanted to share with everyone a guest book entry that we received today. Here it is in its entirety.

Scott and Rebecca:

“I am sorry that Zach is in his current state. As the physician that diagnosed him with Neuroblastoma in March 2000, and as a practicing pediatric oncologist and pediatric hospice specialist, I find nothing wrong with transfusions for terminally ill pediatric oncology patients. I presently am taking care of a 14 year old patient with refractory neuroblastoma who is nearing the end of life. He is transfusion-dependent and would die within a month without transfusions. With transfusions, he is able to maintain some quality activity. Those moments allowed by this transfusion treatment are very important to the patient, family, and friends. I am confident that you will do the right thing for Zachary. You have been doing it for his entire life.”
Craig MacArthur
Fort Myers, FL USA - Thursday, January 1, 2009 10:17 AM CST

(I was going to write more in this update, but I think that Dr. MacArthur’s message is enough for one day.)

Scott

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