Day -5 of Transplant

It’s been almost two days since we drove to the hospital to check in for Idan’s transplant.  As Akiva and I walked side by side down the hallway, wheeling Idan in his stroller down the hallway leading to the bone marrow transplant unit, I had a flashback from my childhood.  My twin Rachael and I were laughing and running up a hill at a national park called Craters of the Moon.  We gleefully climbed the mountain of volcanic soil, holding hands.  We must have been only 7 or 8 at the time.  When we got to the top of the hill, we were in awe of the beautiful view.  But as we turned to go back down the hill, we saw how steep it really was.  We nervously squeezed each other’s hand, and looked into each other’s eyes.  As if on cue, we both said, “I trust you with my life,” and headed slowly down the steep hill, one small foot in front of the other.  Walking with Akiva and Idan yesterday felt eerily similar.  We have gleefully and excitedly arrived at our destination, excited for what’s to come – Idan’s new immune system and all that it entails.  But the path forward is steep and downhill, and we have to hold on to each other tightly, tread slowly, and keep putting one foot in front of the other.

I won’t sugarcoat it; the last couple days have been very difficult.  As we mentioned in an earlier post, the placing of the central line was much later than anticipated.  It also was quite traumatic, as we found out that Idan kept bleeding from his central line for a while after it was placed.  They had to change the dressing multiple times, all before we were allowed to enter the room.  By the time I came to his bedside, the little guy was bent over, still choking back sobs.  He was still drowsy from the anesthesia, but he was scared and angry.  The next morning, we were admitted into the hospital and Idan was finally feeling more like himself.  Unfortunately, in the late afternoon, Idan began bleeding again from the central line site, and, although largely harmless, it was very difficult to control.  Several measures were taken to try to control the bleeding, but nothing was working.  In the meantime, Idan was poked and prodded many more times than planned in this effort to stop the bleeding, and he was extremely upset by it.  There is nothing harder than looking into your little boy’s eyes as he screams in pain and fear, returns a confused and hurt stare, and begs you to save him.  But Idan is strong and, thankfully, very forgiving, and even smiled at the very nurses who moments earlier were forcefully applying pressure to his wound.

After a mostly restless night, Idan returned to his usual self this morning.  Full of life, energy, and jokes, Idan laughed and played his way through the day, and we could not be more proud of him.  He manages to find joy in the smallest activities, from playing peek-a-boo from behind the bars of his crib, to practicing the new words he learned to say, like door, ball, car, and – of course – bamba (his favorite snack).

Tomorrow, we start the ATG, which is another form of immunosuppressant, but likely to cause the most severe side effects.  We have been told to expect that things will get a lot worse for our little one as the days go by.  ATG causes significant flu-like symptoms, among other things, which we will look out for tomorrow and through the next couple weeks.  The effects of the chemo may hit around the same time, so we’re glad Idan is such a strong, resilient little guy!

We are relieved another day of chemo is over, and will send an update again soon.  Thank you for all your support, prayers, and words of encouragement!