Idan last December
It’s hard to believe that there was a time when we weren’t fighting for Idan. When he was “well” and we were blissfully happy (read: ignorant). Last New Years Eve, Akiva and I popped open a bottle of champagne and toasted to our wonderful life with our incredible baby boy, only 5 months old at the time. He slept sweetly in the other room. None of us could have possibly comprehended how our world would be shaken over the course of the next year, and even now we shake our heads in shock.
Fast forward to the end of March, when my mother asked if we noticed that Idan was breathing quickly that day. It was the last day he would play with his cousins Ryan and Brandon for an indefinite amount of time. And two weeks later, we were rushed to the hospital by ambulance to save his life. Little Idan spent three weeks in the pediatric ICU hooked up to a ventilator, unable to breathe on his own. A diagnosis of pneumocystis pneumonia would lead to an eventual diagnosis of X-Linked Hyper IgM, and our lives suddenly changed course.
The following months took us on a journey to find a cure, and led us to Seattle for a bone marrow transplant. We fought and won battles with the insurance company and, with your help, raised over $250,000 to pay for the mounting expenses and cover the cost of transplant. We were showered in warm wishes, prayers, and love from hundreds, if not thousands, of friends, family, and complete strangers. People the world over connected to us, to each other, all worried about Idan. In late September, after a last-minute scramble to find safe transport to Seattle, we were blessed by the kindness of a humble man who shared his private jet to the west coast with us, and we were welcomed into the home of a wonderful family for the weeks of pre-transplant testing. We spent the latter half of October and most of November in the hospital for Idan’s bone marrow transplant, and have been in and out of the hospital and out-patient clinic ever since. All in a year’s work.
For the past several months, we’ve been living in a suspended reality of sorts. We’ve set up a temporary home here in Seattle, and we have been fortunate enough to have family visit frequently. By some miracle, Idan has thrived. In one year, he has gone from barely sitting up to full-on walking and talking, despite every obstacle that has threatened to throw him off course. Neither the ventilator, the isolation from other children and crowds, the multitude of x-rays, blood draws, and other tests, the chemotherapy, the bone marrow transplant, being tethered to Johnny Five for hours and days on end, living in the hospital for over a month on two separate occasions, dozens of medications he takes every day, nor the constant fussing over him by his worried parents have slowed him down. Not. One. Bit.
Today, as we reflect on this past year, although we may be sad for all that has happened and we mourn the many ways Idan has been deprived of a normal childhood, our hearts are full with love and pride when we think of our little superhero. Idan has never wavered, and forges forward, assuring us all will be okay in the year to come. We have high hopes for this year, and we hope and pray that it brings the ever-elusive cure we have been waiting for. We hope this year Idan will not have to endure more chemotherapy or another bone marrow transplant. We hope instead that his donor T-cells will grow and multiply and make a permanent home in his marrow. We hope this year Idan can go back to playing with his cousins, can visit his grandparents, aunts, and uncles, can go to the playground and play with children, without fear of catching a virus. We hope we can go back home to New York. We hope, we hope. In the meantime, we are enjoying every second of isolation with our little boy, who thankfully is a lively, entertaining, and delicious companion.
May all of you have a happy, healthy, and wonderful new year. Thank you for all your support!
All our love,
Amanda, Akiva & Idani
