They say that if you “make it” through the first 100 days (meaning you (1) survive, and (2) have no major complications), your chances of long term survival and overall health are very good. In the past couple years, we have watched too many children succumb to complications from transplant, and have learned of too many more who have lost their lives as a result of Hyper IgM. To say that it was an easy choice to undergo transplant – again – would be wrong on a fundamental level. But we held Idan’s and each other’s hands as we thrust ourselves into the unknown, the vortex, hoping beyond hope that all three of us would come back out the other side.
Today marks the 100th day post-transplant for Idan. We are back in New York, and on the other side of a world of viscous complications. Today, we celebrate that Idan is alive, that he is well, and that he has made it through the darkest days. The next phase of his recovery will still require frequent doctor visits, isolation for at least one year, and many challenges as his immune system slowly recovers, but we can breathe some relief knowing that the life-threatening complications are significantly less likely now than they were up until this point.
In recognizing the meaningful milestone we have reached, we also must pause to recognize the sheer impact of those 100+ days. Going through the vortex was one thing, coming back has been quite another. As you might have noticed from some of our posts, we all grew to love our time in Seattle. For four months, it was the three of us against the world. We struggled together, and we persevered together. We soaked up every single minute we had together, discovering new places, enjoying nature and fresh air, going on adventures, and simply enjoying each other’s company day in and day out. Coming back to New York has been a thrill too – reuniting with our family and friends, sleeping in our own beds, getting back to a normal routine filled with normal things like going to work, scheduling babysitters, walking to the supermarket, as opposed to the hourly medical decisions and actions that commanded the majority of our time in Seattle. But it is also “Zombie central” as Akiva likes to say – one of the densest most crowded place on earth where germs are integrated in the very fabric of this city. And hardest of all is the time we no longer spend together. Idan misses Seattle, as do we. All of a sudden we are back to where we started and it feels incredibly surreal, as though we never left, and as though the whole thing had been a dream.
It turns out that the first 100 days are just the beginning of a very long recovery – both physically and mentally – that necessarily accompanies these sorts of experiences. We may struggle at times on this side of the vortex, but we are uplifted by so many things. For one thing, we are so proud of Idan (and “proud” seems to be such an inadequate word to describe this feeling). He has endured, persevered, and thrived through an experience no 4 year old should ever have to go through. Importantly, we are overjoyed by the fact that, today, of all days, Idan is surrounded by his very large extended family, enjoying pizza and chocolate cake, and laughing like he has not a care in the world.