Day 45: Not looking so good.

“Fear is the mind killer.”  It is one of the first things Akiva taught me when we first met.  Today, that phrase repeats itself over and over in our heads as we received some disturbing news.  Idan is showing early signs of rejection.  The chimerism test that was inconclusive two weeks ago has shown a drop in donor T-cells.  While all other cell lines remain mostly or fully donor, it is likely that these cell lines would be lost if he loses the remaining donor T-cells.  There is a chance the donor T-cells will come up, but our doctors have consulted every expert in the world on transplanting Hyper IgM, and the consensus seems to be that this is an unusual case in a disease that is particularly difficult to transplant.

So tonight, we are drilling down on what our options are.  The first option is to wait and see what happens, but you all know us too well for that.  The second option (assuming it is available) is a donor lymphocyte infusion (a “DLI”).  We are strongly considering that as it is basically an infusion of the donor’s T-cells that gives a boost and helps give them an edge in this battle over space in Idan’s marrow.  Unfortunately, given the fact that the holidays are right around the corner, and Idan’s counts dropped precipitously in the matter of a couple weeks, we may run out of time before we can get the donor’s T-cells.  The DLI comes with increased risk of GvHD, but compared to the harm of having to do a second bone marrow transplant, it may be our best shot at giving Idan a chance at a long and healthy life.  However, if the donor is unwilling or unavailable, the DLI is not an option.  And if the donor cells drop below 5%, the DLI is not an option.  There are a few cases here and there of T-cells coming up over the course of a few months, even if they drop to zero, so a few of the doctors are hopeful (but not quite optimistic) that the counts eventually go up.  If Idan’s T-cells do go up, the DLI may not be necessary, but only time will tell.

For now, we have chosen to try the DLI should it be both available and necessary in two weeks.  If we wait and see, we risk losing all of the T-cells, and the transplant would be a failure since those are the cells we need to replace in order to cure Idan.  We are still scratching our heads how, of all the cell lines to come back with such fervor, it is Idan’s defective T-cells that are most stubborn.  But no one said this would be easy.  We repeat the chimerism test on December 16th, and go from there.

So, after an emotional night and a new plan of action, Akiva and I are preparing ourselves for battle again.  We’re sorting our way through the terror, and forging forward.  Fear is the mind killer.  So, instead, we dare to hope.  We hope that, with the strength of an army and with the love of his parents and family, Idan will be cured.