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2-years

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.