I’ve been holding my breath. Waiting for our lives to change course, waiting for a miracle. Hoping, wishing… dreading. The past three years, we have been in limbo. A cycle of joy and devastation that seems to be in an unending loop. If you’ve been following our story, you know that we had a flicker of hope that Idan’s first bone marrow transplant may have worked just enough to afford him with some immune function that could enable him to live a mostly normal life. After two trips to North Carolina, multiple blood tests, and months of waiting, we’ve received the test results. Idan does not have immune protection, and does need a second bone marrow transplant.
Things will be different this time. Idan will be nearly 4 years old. He is a curious and insightful child. Questions like “when will I go to a school outside” and “why don’t I have friends” are trickling in now, so it’s hard to imagine what kinds of questions will race through his inquisitive mind as we take him for one test after another, put him through surgery to stick a tube into his body that will become a permanent fixture during his stay in Seattle, confine him to a hospital room for 30 days, give him chemo that will turn his stomach and make him lose all his hair. Rip him from his home, his grandparents, aunts, uncles and cousins, his teacher, his babysitters, everything he knows and finds familiar. What questions will run though his inquisitive mind.
Akiva reassured me, “he’s still the same Idan.” And he’s absolutely right. Idan is incredibly strong, resilient, unstoppable, and turns every challenge into a game. In the past few months alone, Idan has learned to read, can add and subtract double-digit numbers, easily counts to 1,000 by himself, and can tell time using a roman numeral clock. He tells jokes, makes funny faces, loves to play doctor, pilot, and board games. He still loves to paint and joyously tackles the most intricate of Lego models. He genuinely loves life, and he is full of boundless energy.
All of these character traits will be tools for him during transplant. His obsession with numbers will mean that, when the nurse is taking his blood pressure with the cuff that squeezes too tightly, he’ll be too busy watching the numbers change on the monitor to mind the discomfort. His joy for playing doctor and connecting vials to syringes (thank you Baxter for the toy IVIG kit) will mean that he will be excited to watch how his central line connects to the syringes and IV tubes, so maybe he won’t be so bothered by being tethered to Johnny Five (his IV pole). His ability to turn even the most mundane things (“Mommy, let’s talk about what’s in the closet!”) into games will help us pass the long days tied to a bed in the hospital.
And, perhaps most importantly, every minute will be spent with the two people in this world that love him the most, a rare and precious gift that we do not take for granted.
So yes, transplant, especially the second time around, is scary and comes with the very risks that make up a parent’s worst nightmare, but Idan is strong, Akiva and I will be there to hold his hand and carry him through it all. We will keep him smiling that brilliant smile, and fight with him for a better future.