We last wrote as we were preparing for discharge. Since then, we received the results of the chimerism testing (discussed more below), and we spent four glorious days outside the hospital. Most of those days were consumed with doctor appointments and transfusions, but we had very good company (Idan’s grandparents arrived on Friday) and we were able to enjoy all of Thursday and all of Saturday.
The results of the chimerism test were not quite what we had hoped for. Instead of coming back 100% donor, some of Idan’s cells have stubbornly grown back, including his T-cells, which are the defective ones that need to be replaced. They tested four lines of cells: the Myeloid cells, the B-cells, the NK cells, and the T-cells. The Myeloid cells came back at 100% donor, but the NK and B-cells were mixed, with 77% and 62% donor cells, respectively. The most concerning is that the T-cells back at only 16% donor cells. The doctors have assured us that this may just be a result of the conditioning protocol, and do not think that we should jump to the conclusion that he is rejecting the graft. Apparently, with a Treosulfan protocol, it is not uncommon to see mixed chimerism (donor and host cells) at this early stage, and then to see the donor cells come in stronger a few weeks or months later. They are happy with his myeloid, B-cell and NK cell engraftment, and will keep a close eye on the T-cells. It may just be too soon to see donor T-cells, and we need to just sit and wait. They are re-testing the chimerism again soon, and we should know more in a couple weeks. If the donor T-cells go up, then it means that they are just taking a little longer to engraft. If the donor cells go down, it means that he may be rejecting the graft. We hope that the engraftment of the other cells will help kickstart the donor T-cells.
At first, when we heard these results, our hearts sank to the floor. But after reading several articles and consulting a few experts on the immune system, we are more optimistic that this is just part of the process. We have always known that the donor immune system would take at least a year to grow and stabilize, and that there would be many ups and downs along the way. Hopefully, this is just a bump in the road!
Until we know for sure, we are focusing on the positive. Idan is out of the hospital, has had an incredibly good time with his grandparents, and is still smiling and feeling good. As I write, he is pushing a walker around the apartment, untethered from Johnny Five. On Tuesday, we came home from the hospital to three large boxes filled with toys, necessities, gift cards, and warm notes and cards from many of my friends and colleagues from work. A friend from home knit me a scarf, and another friend sent Idan a portable menorah and Chanukah presents. Family and friends from near and far have called, Skyped, emailed, and traveled across the country, all to make sure we are okay. The amount of kindness and support we have received is beyond anything we can fully comprehend. It brings tears to our eyes and gives us hope that Idan is going to be okay. We love you all and hope to be sharing better news next time.
Holding my breath….
Just like the rotovirus and rash turned out to be minor issues, the initial T-cell results will too. If it were all going to go perfectly smoothly, the doctors would have no reason to use the “at least one year” benchmark. So these little bumps in the road are just part of the process. Please try not to worry. Continued prayers are always being sent for you guys. Love to all.
I truly believe you are right, just another little bump in the road…I know how hard it must be to get anything, other than perfect news, but it’s only been a few short weeks, so hold on to that, and know that Team Idan is continually lifting you all up in prayer! I know i certainly am! Love & Lots of Hugs, Becky P.