Wednesday, December 11, 2013

Days +103 to +110: Good News!

Today brought fantastic news: Ezra's T cells are 99% donor!!! And all other cell lines are 100%! We are beyond relieved and so thrilled! The news comes after we had a stressful discussion yesterday with Ezra's doctor where he was preparing us for the possibility that his T cells will be mixed chimerism. With T cell depletion transplants, it is apparently not unusual for the T cells to grow back mixed initially, and then the donor cells take over as time passes. This would have been a difficult scenario for us to handle given what happened with Ezra's first transplant. We knew that mixed chimerism was a possibility from the beginning and that his cruddy T cells are not so easy to knock out, but we were praying that we would never have to see those defective T cells again. Based on these results, it looks like Ezra's CD40 Ligand deficient T cells have hit the road. Adios T cells - you will not be missed!

We are hoping that Ezra's incredible-needle-in-a-haystack-miracle donor feels our joy and gratitude wherever she may be. This is all because of her. We welcome all of her cells and love them and her fiercely.

Ezra, by the way, does not know about any of this. We learned our lesson the hard way with the first failed transplant that we should not tell him much about his new cells until there is more certainty. Until the GVHD stays away and until he has the necessary amount of functioning T cells, we will not give him details. All we tell him is that his counts are good, he is doing great, and that we are so very proud of him. We patiently look forward to the day when we can tell him he has a new, strong immune system and he can go conquer the world. For now, we keep our victory dances for when he is sleeping.

The next steroid wean started last night. He will be on the steroids for about another month at the current rate. The rash has not returned. With these lower doses of steroids, it is more likely that the GVHD may flare up, so we are watching his skin very closely. The amount of T cells will likely be checked again at the end of the week. We are not expecting much T cell growth, if any, due to the steroids.

Thank you to everyone for sharing Ezra's YouTube rocket video! He has over 2,200 views and he is thrilled! He loved hearing all of the awesome comments! Thank you for giving him something to look forward to and to enjoy!