Day 144: If there’s a will, shouldn’t there be a way?

The latest chimerism test results confirmed what we already feared – Idan’s graft is slipping, and it’s slipping fast.  It seems his myeloid cell line is slipping by 20 percentage points every four weeks.  It is now at 31%, and it is likely it will bottom out before May.  Idan’s NK cell line, which had been stable for some time, dropped 12 points to 70%.  Idan’s T-cells remain stable, for now, as do his B-cells, but without myeloid cells, none of the other lines stand much of a chance.

There are a couple options that we have been given.  Wait and see, which means more likely than not that Idan will lose his graft (i.e., rejection).  Or, we stop all immune suppression and see what happens, but risk severe GvHD or wiping out whatever is left of the graft. The third option, which seems the most promising based on our initial conversations with other patients but not by any means a miracle-drug, is adding a third immunosuppressant which may favor the donor cells this time.  Idan’s immune system is already very compromised with the immune suppressant and steroids, and will be at even more risk with a third immunosuppressant on board.  Our doctors are getting back to us next week with their recommendation, but the bottom line is that the picture is looking grim.

It helps that we are knee-deep in boxes and still all-consumed in the day-to-day routine.  It also helps that, for the first time in six months, when we receive bad news, our family is only moments away for moral support.

The last few weeks, we’ve been packing everything up and trying to make sure Idan wouldn’t be traumatized by the move.  He helped us pack up many of his toys to be shipped back to New York, and all of his artwork that he enjoyed pointing at each morning.  We even bought wall decals to match the ones he had in Seattle in his playroom.  But, to our great surprise, Idan felt right at home from the moment we walked in the door.  He had an intuitive sense of where everything was, almost immediately was walking around our home like he owned the place, and — best of all — has been so very happy.  It hadn’t occurred to us that Idan actually missed home because we thought he’d surely forget the place after spending 6 months away at such a young age.  But no, he is literally singing and dancing all day, sleeping peacefully at night, and waking up with a huge smile.  I can’t help but feel that Idan senses that he is “home.”

For the next several weeks, we will continue with the weekly clinical visit, labs, and continue to be on high guard for temperatures above 100.3.  Idan may be many weeks out from transplant, but he still has a long way to go before he is back to his “status quo.”  So we are continuing to follow the isolation protocols that we did in Seattle.  To our many friends in NYC who are hoping to see us now that we are back, we appreciate your patience and understanding.