Today marks a year since our return home to New York after Idan’s bone marrow transplant (BMT) in Seattle. It truly is amazing how time flies, and so much can change in our life, yet at the same time still be the same. We left to seattle in September of 2013 full of hope that we would bring home a cured baby and be able to start our normal life again. When we returned to New York last March on day 140 post transplant, we already knew that the cure was slipping away from us.
In those months out in Seattle, the transplant days went by with no major glitches and Idan did well despite the chemo and immunosuppressive treatments. Besides some minor setbacks, it seemed at first that he engrafted and we were sent to outpatient sooner than expected. But as time went by, we learned that the most important part of the donor graft, the T-cell line, never really took hold. We did our best to save it, going back to our generous donor and asking for more cells. In December 2013, we give Idan his first donor lymphocyte infusion (DLI) and waited. By January, we knew that it only gave him a small bump, and unfortunately that small bump came with graft vs host disease (GVHD) of the skin, which required increased immune suppressants and steroids. Throughout this whole time, Idan never really complained and was a happy and inquisitive baby who learned to walk in the halls of Seattle Children’s Hospital and the wonderful outdoors of the Seattle neighborhood we lived in.
When we were allowed to return home last March, we were still full of hope that his graft would take hold and that a cure was still on its way. When we brought Idan back, he was a little toddler full of joy to be reunited with all his family in NYC.
When we returned to New York, our life was so different from the March before. The previous March, before he was diagnosed, we spent our time going to the park, meeting up with our friends with young children, and taking swimming lessons at the JCC. That March, however, passed in isolation, venturing out only for twice-a-week doctor appointments and blood draws. Compared to Seattle, NYC felt like a zombie-filled nightmare with virus spreading strangers at every corner. It was good to be back with family but it was hard to entertain an almost 2 year old boy with this kind of isolation. Idan was on 13 daily medications with 26 different dosages at every time of day and night. Going to his grandparents for the day meant packing ziploc bags with two dozen syringes and planning his nap and meal schedule around the medication times. Idan grew tired of the weekly blood draws and started fighting off the needles. And still, his graft continued to slip away.
In the fall, we returned to Seattle and made one last effort to save the graft with a second DLI. When the graft continued to slip in the weeks and months that followed, it became clear to us that the graft was no longer a graft, and now just a memory – an unfulfilled promise of what could have been.
This past year flew by and we find ourselves a year later very much in the same place we were before leaving to Seattle the first time. Idan has grown up, and turned into a smart, inquisitive and very curious little boy. In July, he will turn 3, but he feels older and wiser for his age (he is also very tall and sturdy, something that is unusual for transplant kids). We are comforted by the fact that he is no longer in post-transplant mode, but he has regressed back to Hyper IGM life. Thankfully, his daily meds consists only of 3 vitamins and supplements and twice a week prophylactic antibiotics to prevent the return of the PCP that landed him in the ICU back in April 2013. Blood draws are infrequent now, and if all goes well, his next draw will only be in May. We still give him weekly infusions on Saturday mornings with antibodies that keep him safe, and he takes those three needle pokes like a real superhero.
Amanda and I have spent the last two years learning everything and anything about Idan’s rare condition. I doubt any doctor or patient out there has read more medical journals on the subject then we have and we continue to try to understand the disease while we asses the risks involved. The facts remain the same though: the median life expectancy is 24 and over 80% of patents don’t make it past their third decade of life. We knew this before transplant and took the high risks then in order for our son to have a long and happy life, and we will do it again in a heart beat.
What this experience has taught us more then anything is that we are goal oriented people, ever focused on our vision of tomorrow, ready to face the challenges along the way.
Ten years ago, when I (Akiva) was diagnosed with a so called “inoperable” brain tumor in my brain stem, I set a goal to be completely cured, regardless of what 30 of the top doctors were saying my chances were. And I met that goal by risking everything and having complicated brain surgery in Arizona with the one doctor in the world that was confident enough to take me on as a patient. Two years ago when Idan was diagnosed, and after the initial shock of the ICU, we set a goal to learn about Hyper IGM and talk to as many experts so we can make the best and most empowered decision on how to cure our son. And we still stand by our decision to uproot our life, leave our jobs, and move to Seattle for six months to cure Idan. Despite the failure of the 1st transplant, we have never given up hope.
We have once again set a goal, to transplant again within the next two years, again in Seattle and with the hope of a better matched donor. Idan will still be under five when we try again, which is the age that the risks of transplant are better controlled.
In the meantime, we continue to live our lives and help Idan thrive and grow. You may have seen the posts on Facebook, as the kid is happy and an extremely energetic two year old. He talks non-stop, expresses his feelings, and loves to learn and build and just have fun. He has always been a happy child, weather in the ICU, getting chemo, tethered to an IV pole or being cooped up in a NY apartment for most of the winter. No matter what, he always wakes up with a smile and declares “Wake up!! Its time to play!”
We would like to thank all of your for your continued support. Idan’s army always has a special place in our heart and it makes us stronger and gives us hope that we can enter again into this battle for a cure and hopefully this time come out triumphant. Someday, in the future, when germs are not the big boogieman anymore, we hope to thank more of you in person for your support.