If 6 Was 9

'Twas the week before Christmas and all through our house, we were nervous wrecks, wondering what would come out...of Scan Week.

Moreover, there was added weight to this particular set of scans, as they would serve as a signal on two fronts: The immediate term and the medium term. We are relieved to report that all scans were normal. Andrew continues to show No Evidence of Disease. Our Christmas came early.

Perhaps more importantly, however, this month marks two years since Andrew has been off active treatment for the disease. This is meaningful. High-risk Neuroblastoma is typically looked at in time periods of two years off treatment and five years off treatment. Those are our milestones. Two years is selected, because the risk of relapse is greatest in the first two years post-treatment. In high-risk Neuroblastoma, the statistics say that the chance of relapse during this time is slightly greater than 50%. Once a relapse occurs, the chances for long-term survival plummet into the single digits. I am not sure if, mathematically, this is the correct way to think about this, but when I first heard that number, the illustration that I constructed in my head was this: Every morning, when Andrew wakes up, he flips a coin to see if his cancer will return. Heads, he wins.... Therefore--at least according to my analogy--we're talking about a kid with 730 heads in a row! That is a serious amount of luck.

Looked at in that way, every day is its own milestone. But our "long-term" goal is to reach the five year mark. At five years off treatment, the feeling is that the cancer should not return. The word, "cured," is not used with this disease, but five years is nonetheless considered the marker for continued remission. Andrew will be 9 in December, 2014. Part of me wishes I could just fast-forward through the next three years to get to that date and know that he will be all right. Of course, that's not possible and, frankly, it would mean giving up the events and experiences of tomorrow and the next day and the next day, etc., which I am not sure I am prepared to do. He is exploding with growth at the moment (not physically, mind you; between his genes and the chemotherapy, he is serious shrimp material) in terms of his interests and curiosity and personality and energy and dynamism--I don't want to miss these days.

I am so grateful that the holidays are upon us. Obviously, I am grateful that we have simply reached another set of holidays. But, I appreciate this time of year so much, because--as hectic as we all get with our planning and shopping and travel and whathaveyou--these days also seem to stretch out a bit and remind us to slow down, take a break and enjoy our time with one another. These are days to be savored for their richness of family, friends, festivities and memories. Please take advantage of the time; it is truly a gift.

Merry Christmas to all and to all a good night!

Love,
Paul