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  • Written Apr 25, 2012 10:51pm

    We got great news today that Stuart's MRI was "clean." Whew. This is the longest we/he's gone between MRIs since Stuart was diagnosed and we were definitely anxious. We were prepared for a lot of tears and fights today but Stuart really surprised us. It helped that Stuart was able to go under with gas before the put in his IV. This was a first. The IV is usually the biggest battle and they put it in upstairs in the "day hospital" before sending us down to the MRI suite. I spoke with Stuart's nurse who was with him during the MRI and she laughed that Stuart totally spooked the anesthesiologist.  Apparently he thrashed around for two seconds while they were putting on the gas mask. They were scared and asked if Robby who was there too, was OK. His nurse told the MRI team that they clearly had never witnessed Stuart getting stuck with a needle or getting an IV because this was by far the easiest, most smooth experience. I'll never forget the time Stuart was getting one of his experimental radiation treatments in which a large needle filled with radioactive iodine + the 3F8 antibody was stuck into the port in his head. I held down one arm, Robby the other, one nurse had his right leg, his oncologist had his left leg and the nurse administering the radiation had to literally climb over us on to the bed and straddle Stuart's head. He fought us so hard. We were really thankful that we didn't have to battle Stuart today. We were also reminded of how far Stuart has come since he finished treatment and how much he has changed. All of the receptionists, doctors, nurses and child life specialists who saw Stuart today were blown away by how big he is, how much his face has changed...they greeted him like a rockstar and at one point he was surrounded by 6 team members all beaming with pride and joy. I think Stuart actually blushed at all of the attention. Today was a good day. 

    On Friday I'm hoping to bring Stuart to visit his brothers on the Columbia football team. They are a special group and they've organized the 2nd annual "Jacked4Jaclyn" event to raise funds in support of the Friends of Jaclyn Foundation. I'm hoping Stuart will help me cheer them on and won't get too shy without big brother Bo by his side; he'll be stuck at school. I also want to mention a former teammate Alex Gross '11, who is playing pro football in Austria and has started a fantasy football fundraising effort to support pediatric brain tumor research. These guys are amazing. The Bronxville varsity women's lacrosse team is also planning a Friends of Jaclyn game day on May 10th. We are celebrating Stuart's birthday that day but I'm hoping Stuart can meet some of the girls at practice one day. I'll just have to assure him that they'll be different from the girls his age --they won't be all dressed in pink and talking about princesses -- or else he'll refuse to get out of the car! If your spring is anything like ours, we know you're busy. But you have our sincere thanks for taking a moment out of your day to think about Stuart and other children just like him who continue to battle this disease. Thanks always for your love, prayers and support. 
  • Spring Update

    Written Apr 16, 2012 10:30pm

    Stuart's next MRI is on Wednesday morning. This will be the first MRI since we moved to a 4-month cycle. I would be lying if I said that I was not crazy anxious. While these last 4 months have been blissful in general, they have not come and gone without some challenges, some struggles and some milestones. When I reflect sometimes on Stuart's progress, I realize just how much I sometimes take for granted because Stuart is so amazing. Part of this, is because we like to treat him as "normal" as we can, but I think another part of it, is that Stuart has accomplished so much over the last 27 months that it is sometimes hard to fathom. Two years ago, Stuart had just received his first stem-cell rescue and was preparing for his fourth round of chemotherapy, which was also the first of the "high dose" rounds of chemo (sounds relatively benign but "high dose chemo" regimens are ridiculously tough) - his body was battered. Today, Stuart is less than 2 months away from "graduating" out of pre-K into kindergarten and less than 4 days away from starting tee-ball (the River Dogs)! Just over 2 years ago, Stuart was still suffering from posterior-fassa syndrome, where he could not speak and needed help moving around. Last weekend at the park, Stuart was shaking his "booty" for all to see and singing that absurd song "I'm sexy and I know it- and I'm not afraid to show it" out loud for anyone to hear. Two years ago, Stuart would sometimes spend all day laying in a hospital bed and would rarely speak to even the nicest of the doctors and nurses. Back in February of this year, Stuart skied five days out of six in Jackson Hole and would routinely introduce himself to ski instructors as Stu-Stu.

    Stuart had another corrective eye surgery done 3 weeks ago- right before Easter. It was the exact same surgery -- on both eyes -- that we had tried last year around Easter. But we switched to a new surgeon who came highly recommended and whom we really like. Dr. Steele was pretty confident that he could straighten Stuart's eyes and give him better depth perception and peripheral vision but as far as Stuart getting back to Binocular vision (seeing 3-D, etc...) we will have to wait and see. He said it was a 4 out of 5 chance that this would be the very last eye surgery Stuart would ever need. While the surgery was done in the Day Hospital it was still a pretty big deal for Stuart (and for us). As Stuart was struggling to wake up in the recovery room, and having a pretty tough time with pain and nausea, it dawned on me again how many times he has gone through this crazy routine these last two years. Going to the hospital for either a surgery or a major procedure has become very routine, for us at least. And even though this has been Stuart's life for the past two plus years he still struggles each time and it doesn't get any easier. As Stuart drifted back to sleep, Dana and I did some counting; this was Stuart's 8th surgery in the last 27 months and he has had full anesthesia 25 times over the same period (#26 will be on Wednesday, although Dana thinks we're missing a few emergency MRIs). This doesn't even include the injections in his head that he got while getting the Intrathecal Radiation. As brave and as strong as Stuart always is, he still has his moments where he basically yells, Enough Already- I certainly can't blame him. This last time we had to be at the hospital by 6:00 AM, which meant we had to wake Stuart up a little after 5. Keep in mind, Stuart had not been to the hospital for anything major since back at Christmas. Also, keep in mind that although we had done our best to prepare him for the day, we know most of our discussion did not fully register with him. No, as he was soundly sleeping 6 feet from his brother in his cozy monkey pajamas, I hardly think he was "prepared" to be woken and thrown into a car to go for surgery. He was pissed. He hit Dana a bunch of times and then he promptly took off his shoes and socks when we got outside and it was super cold. When he started yelling, "please, please take me back inside" it was all I could do to turn the key to the car. Then, when we started down the highway, Stuart started yelling, "next time we have to do this, I want it to be Bo-Bo that has to go and not me...it's always me...why is it always me?" Good question. Don't have a good answer. We try to be as honest as possible but the reality is there is no good answer- not for Stuart- not for anyone. And we've been warned not to try to explain too much because he's too young to process it and too much information will only add to his anxiety. When we give him the whole, "everyone is different" and this is just something that we have to do with you to make sure that you are 100% healthy, he will ask, "why did God make me have a brain tumor?" Or sometimes, "why do I have this bump in my head (his Ommaya Reservoir) and no one else has one?" Or, "why do I have to always go to Lisa and Ms. Branson (his OT and PT specialist's) and Bo doesn't?" All reasonable questions. All very tough to answer. At this age it's especially difficult because he knows he's "different"...kids on the playground see him as "different" and treat him that way, but he doesn't know why. As a parent it's very, very hard to watch. I can't even imagine what goes through Stuart's head when kids on the playground single him out and say he can't play with them. He's been through so much (and he's only four!) and we just want him to catch a break. Unfortunately we met with Stuart's surgeon last Friday and we learned (we had kind of been prepared for this after watching his eyes heal) that the surgery was only "partially" corrective. True to Murphy's law, Dr. Steele was able to correct the horizontal crossing of Stuart's eyes but now for some crazy reason he is experiencing vertical crossing where there hadn't been any before. We are going back to patching one eye for a month while Stuart's eyes completely heal to see if it will help but Dr. Steele has already mentioned the possibility of a third surgery - very frustrating. I am sure Stuart is pretty frustrated as well, certainly considering he is in the room while we discuss these matters with the Doctor.  He must be like, "no kidding, it didn't work- haven't you heard me when I told you I am seeing double or that my vision is all blurry?" Dr. Steele was trying to comfort us when he told us that even if Stuart never regained complete binocular vision all was not lost. He said, "look, he may not fly planes and it is not likely he will be picked first for any sporting teams but he is going to be just fine." That was actually tough for me to hear- not because I care if Stuart is a sports star- I don't. It is just that I wish there was not going to be yet another thing that causes Stuart to stand out. The past two years have been so hard on him that we just want him to have something come easy like making a friend or being able to draw a circle or catch a ball. I guess we haven't fully grasped that even though he made it through treatment, kids with brain tumors have a very long road ahead of them.

     

    Maybe it is just his age and hopefully just coincidental but Stuart has become obsessed with asking about death these days. He wants to know why people die, why some kids don't have parents, when most people die and when he is going to die. He was super nauseous after surgery the other day and he couldn't keep anything down for about a day and a half. Yet, he kept asking for food. When we explained that he needed a little more time for his stomach to get better, he told us he thought that if he didn't eat anything he was going to die and he really didn't want to die. Stuart now equates grey hair to someone that is going to die soon. We have told him that this is nonsense and that both of us have grey hairs and both his grandfather's have Lots of grey hairs and none of us are dying for a long time but he is adamant, "I want my hair to always be blond- not grey!" I have read that these types of questions are typical of children that are around hospitals and/or sick people, nevertheless it is not something we feel super comfortable talking about.

     

    In preparation for Kindergarden, we just had Stuart's annual "review" of all the services he gets through the public school system. Everyone in the room is a huge Stuart advocate, and I think that they are all super impressed with his progress in this past year, and yet I still find reading some of their reports almost painful. I know they likely over stress certain things just so there is no question about Stuart continuing to receive the services, but still, to read that he is the low single digit percentiles for many age appropriate activities is tough. Stuart's official designation is "Other Health Impaired." I am starting to notice that Stuart has become more observant about how easy and natural certain things, like drawing pictures, playing the Wii, and playing sports come to many of his peers and certainly to his big brother. This cannot be easy for his self-esteem and I think on some occasions Stuart would rather just not play than be the one kid that is clearly struggling- I don't blame him. On the playground, Stuart is "desperate" for friends to play with. He will play by himself for a bit and then he will normally come up and ask, "is there anyone you think that wants to play with me?" We always tell him just to introduce himself to other kids and we are sure they will want to play. Sometimes he does, and sometimes when he finds a friend that wants to play tag, he promptly "loses" that friend because when the friend wants to either start chasing him or maybe even change up the game, Stuart freaks out. He misses or misinterprets social cues. There are some basic things that Stuart has a hard time "connecting" with. For example, he doesn't understand in kick-ball that after kicking the ball you need to run to first base. He has no clue how to use the joystick on the Wii. Yet, other parts of Stuart's observers' reports reads very promising- such as the part that was supposed to measure "intelligence" by testing matching abilities- he was in the 95th% percentile. So, we know he is super smart, he just has a hard time grasping certain concepts. Stuart sometimes manifests his frustrations by "hitting himself." All I can say is that we know things may not get better (easier may be the more accurate word) overnight but we will continue help him along. I'm pretty sure he is going to be just fine.

     

    Some of the developmental issues discussed above had begun to take effect on Stuart's behavior with his friends, with his therapists, and in his classroom. Thus, we finally found Stuart (and us) a child Psychiatrist that had seen children like Stuart. Long story short, I think Dr. Damore, who incidentally used to be the child psychiatrist at Sloan-Kettering, is going to be very good for Stuart. Most of what we have been working on thus far, centers around giving Stuart proper structure to his day, making him comfortable (less fearful) with his feelings and proper ways of disciplining him when he acts out. 

     

    As discussed previously in this journal, with each subsequent "clean" MRI, Stuart's long-term prognosis gets markedly better and better. While this fact will not make Wednesday any easier, I am optimistic that Stuart is on his way to many more positive milestones in the near-term and that MRI days going forward will hopefully just be a day of painful nuisance. Hopefully as the months turn to years, this type of journal entry where we complain about problems, while certainly not trite by any means but at the same time not at all life threatening, will be the norm. We are extremely fortunate and we feel blessed. Unfortunately, this progress is not the same for all kids that are affected by this awful disease. Through various brain tumor websites/e-mail chains, we have unfortunately learned of several new "angels." These e-mails are gut wrenching. Each of these children is just as innocent and just as courageous as Stuart but for some reason they have lost their battle. I know many of you pray for Stuart, especially around his MRI dates- thank you! In fact, I had a lady that cleans at my workplace that I rarely see or have conversations with, approach me the other day and ask "how is your little baby? I pray for him." I can't tell you how good that made me feel. If you happen to pray for Stuart this Wednesday, please include in your prayers All of the children that are fighting this disease and certainly all of those families that have lost battles.
  • 2-years

    Written Jan 12, 2012 8:00pm

    Happy New Year! Today is January 12th.  Two years ago, almost exactly as I am typing this, we were told that Stuart had an aggressive brain tumor. It is a moment in time that I have reflected on almost every day since.  I remember the conversations with Dr. Pockat, with Dana and with my parents like they had just occurred five minutes ago. I remember Stuart sitting on the hospital bed with Dana's ski helmet- we now know that he wanted to wear that helmet because it must have comforted his quickly swelling brain. I remember taking Bo back to our hotel room to gather clothes and toiletries for Dana and Stuart as we thought they were going to be the only ones allowed on the plane. I remember talking my way out of a speeding ticket as tears flowed down my cheeks as I was speeding back to the Hospital. I remember searching for the right words to explain what was going on to Bo. I remember the longest night of my life as the four of us tried to sleep together in the same hospital room, knowing that the next morning Stuart would have brain surgery. These were dark moments for us to be sure. Yet, I also remember Dana constantly whispering to Stuart that he was a super-hero and he was going to be ok. I remember a four-year old Bo hugging Stuart any chance that he could. I remember the sheer sense of joy and relief we had when we spoke with Stuart's surgeon after the operation and he told us that Stuart had done great and that he thought the surgery was a success. As we have painfully learned, two years after a diagnosis like this, many parents do not have a happy story to share. For those parents and families, we can only pray that ultimately they will find comfort and peace despite their horrendous loss. Our own journey thus far, while certainly not without some trying and painful times, has certainly been Blessed. Stuart had his regular 3-month MRI just before New Year's, and as has been the case ever since the end of his treatment, it was All Clear- No Evidence of Disease. We were obviously ecstatic. I could not dream of a better way to start off 2012.

    If you recall from prior entries, the two-year mark is a significant one when it comes to Stuart's disease. According to Dr. Dunkel, after two-years all of the significant statistics concerning relapse start to swing to "our favor." Certainly, Stuart is still several years away from being deemed cured and one could argue that he is still in a "critical period" as far as avoiding relapse, still it is comforting to know that with every passing MRI going forward the chances that his tumor will come back will be significantly decreased. Dr. Dunkel did caveat in a very optimistic e-mail to us a few days back, that in a strange way, the fact that Stuart received the additional 3F-8 Immunotherapy treatments may throw off the normal statistics associated with two years. That is because, if Stuart had had a pre-disposal to a recurrence just previous to the 3F-8 treatments, and then the 3F-8 did its job and killed the cancer cells, then the clock really would not start ticking until then as opposed to when Stuart was diagnosed. Nevertheless, to us the two year mark was worth celebrating, and so we have!

    As we have described on many previous posts, MRI days are nerve racking. I think "helpless" is the best way to describe it. If you were to go back a year or so and probably even as recently as six months ago, I would describe Stuart on MRI day as completely naive- I don't think other than the fact that he was pissed about being at the Hospital, he really grasped what was going on when he got "his pictures." I think that ignorance  is now changing. I am not sure if it is our facial expressions, our demeanor or just him overhearing some of our conversations with the doctors and nurses, but now he seems to "Get It."  This was the second time in a row, that after hearing the great news, I caught a sneaky little smile on his face! It is hard to describe how good those types of moments feel- to me, it is like you can walk on water and while I would never wish the nightmare of two years ago on anyone, I sometimes think that it would be impossible to have such Huge highs, if not for the very deep lows that we experienced back then. As is usually the case, while we were busy being nervous, Stuart did his best throughout the morning to keep us in stiches. This time, because they needed to run some tests they were going to give him a "bag" to wear for collecting urine while under anesthesia. However, we were able to convince him that it might be "cool" to instead Pee in a cup. Stuart thought it was hilarious and he gladly filled up a cup. He then proceeded to scream to every technician or nurse that he saw in the MRI area that he had just "peed in a cup." Additionally, somewhere along the way Stuart has recently picked up the word, Dammit- I am positive it wasn't me! Now, anytime something minor goes wrong, like not being able to button his shirt or his Crayon breaking or not being able to find a certain Lego, he blurts out "Aw Dammit!" Adults, like those in the waiting room at MSKCC, that overhear this are extremely confused- we just shake our heads and try to ignore it.

    Getting Stuart 100% healthy has always been our over-riding concern. Even though there are some things that Stuart struggles with everyday, it is our firm belief that he will eventually catch up in every facet. From every standpoint possible, we are thrilled with Stuart's development and we couldn't be more proud of him. Yet, this is not to suggest that Stuart doesn't have daily struggles. In some ways, as he has gotten older and more aware of his surroundings these struggles have intensified. Just ~ seven weeks ago, Stuart had to go sit in the Principal's office at his pre-school and attempt to explain why he had hit his SEIT (Special Education Teacher.) I didn't even know that it was possible for a four year old to have to go to the Principal's office. Even then, Stuart showed a lack of remorse, saying, "well...but....well...she was being mean to me." While last year, I think Stuart thought his SEIT was just another teacher in the classroom, he is now keenly aware that she is there specifically for him. On many occasions over the last few months, Stuart has woken in the middle of the night with nightmares. Following these episodes, many times the next morning he has made reference to the fact that he had had a brian tumor and he wants to know more about why? It is tough to know exactly how much to discuss about these things with Stuart since he is still only 4. On the one hand, we really had hoped that he would forget about a lot of this stuff- on the other hand, we shouldn't just gloss over it like it was a trip to the ER to get stiches. Stuart has some frustrations with things that are way beyond what we have seen in other kids his age. Recently he has gotten so unconsolable to the most minor of things, that he resorts to hitting himself in the face until we stop him. We are convinced that some of this irregular behavior is due to some combination of his original tumor and brain swelling, his craniotomy (brain surgery), and his treatment regime. We have looked for professional help in having him evaluated but we have not found the perfect person yet, largely due to his young age. I am still convinced that some of his struggles in school with writing and other motor skills is a direct result of his strabismus and his "shutting down one of his eyes for most of the day." Stuart came to work with me the other day before Christmas. When there, he saw a picture of himself on my desk that was taken at his school last Father's Day which was when we had tried the eye surgery that turned out to be unsuccessful. He was so cute in the picture which is in the shape of a fish and reads, "My Daddy says I am a Keeper", but his eyes are still bloodshot from the surgery. Stuart immediately recognized this and starting yelling that he didn't want his eyes to be red. Further, by late afternoon almost everyday, unless Stuart has fallen asleep in the car, Stuart is noticeably exhausted. It gets to the point where we just have to carry him. It goes without saying that we want what is best for Stuart and we will continue to help him work through all of these issues. Yet, as I was thinking the other day: Stuart's exhaustion and struggles with physical activities.....that may improve or maybe that is just the way it is going to be.....Stuart's strabismus and directly related struggles with peripheral vision, coordination and balance....that may improve with exercises and/or another surgery down the road or maybe that is just the way it is going to be....Stuart's struggles with holding a pencil, recognizing numbers and letters and coloring....that may improve dramatically over the next year...or maybe it won't and he will struggle in this area forever and it just the way it is going to be. (For the record, despite some struggles, Stuart's teacher is recommending him for Kindergarten next year) I think I have come to grips with all of these scenarios and while I sincerely hope that Stuart's life gets much easier over time, what is truly important and really All that matters to us, is that he is here with us each day, making us laugh, chasing his big brother, learning to swim, getting sent to the Principal's office and everyday demonstrating to us what a Bad Ass he truly is. As I reflect back to those dark days in January 2010, it is hard to believe that the same child that woke from surgery not being able to move or talk is now planning sock bomb attacks and creating havoc at pre-school. We have so incredibly much to be thankful for.

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