Today we officially mark the 100th day post-transplant milestone. They say that the first 100 days of transplant are the hardest, and carry the most risk of infection and GvHD. Idan has made it to this point in great shape and has continued to grow and thrive despite everything he has been through. This is of course a reason to be very happy that we reached this point. Then again, Amanda and I always thought that by day 100, we would be well on our way towards a cure for Idan and preparing to return to our home and family in NYC. Instead, we are still in limbo and nothing much is changing at this point. We are staying in Seattle, for now, and Idan’s central line will stay in as well. We stay on most of the oral meds he has been on for the last 3 months including the immunosuppression that both keeps his immune system low but also carries other side effects. And we are also no closer to knowing if Idan will be cured, with only 12% donor T-cells and a graft that has not shown itself to be stable yet.
And yet, we stay positive and hopeful that things will get better and Idan will be cured. Having an optimistic approach to Idan’s challenges is the only way I know how to deal with adversary. Any other approach, in my mind is futile and lacks utility. I don’t spend my time thinking of the “what if’s” or second guessing decisions I have made. My positive attitude is directly correlated to the fact that Amanda and I have made our own informed decisions regarding Idan’s health. It is for this reason that I am positive that we both made the right decisions and that things will be okay. After all, this is the belief that allowed me to make it to this point in in the first place.
I was not supposed to be here. At least, if you go according to a couple dozen top neurosurgeons and neuro-oncologists. Eight and a half years ago I was diagnosed with an “inoperable” brain tumor in my brain stem. I was told I could not have it removed, and I was told if I tried, I would most likely die, or become so disabled that quality of life would not be worth the risk. Then, like now, I was not content to give up, and instead spent months, with my family, researching and finding the best option, one that can give me a chance. As with Idan’s Seattle Children’s Hospital, my saviour would be a so-called “cowboy” surgeon in Arizona. I was told by almost every other doctor not to to go down there and was “fired” as a patient from some for doing so. But it was my decision, and my true conviction that things will be okay, and that I can beat this, that allowed me to leap off the cliff and face Fear himself and survive.
It was that decision, to live, that led me to this point. It was the fact that I needed months of rehab to recover that led me to staying an extra year at Columbia. It was that extra year at Columbia that allowed me to meet the girl I had crushed on for 4 years, and it was a cumulation of all my decisions until that point that made me the man Amanda fell in love with. And out of that love, came a new one, a new era, our little Idan. This is why I know that things will be okay, that Idan will be cured and will survive and do great things in his life. It is because he was not just born to strong willed parents that are survivors, it is that he has an inherent positive outlook as well. He is the one sitting through all the poking, prodding, and procedures. He is the one that received chemo, infusions and surgery, and he is the one that has kept smiling and thriving despite it all.
The 100 day mark is another badge of survivorship that Idan and our family wear with pride. It is not the end of our journey, it is still just the beginning. Today we are thankful that we made it to this point and Idan has stayed healthy and we mark another badge of honor on the wall of our life’s journey. We have many more voyages ahead, and probably some stormy weather, but we know that we can face these challenges and that we will come out stronger. Idan has been our hero since this all begun and he continues to be the brave little boy leading our way.