Day 213 Natalie, Day 186 Alice
It has been a discouraging day for us. Due to Alice's scope looking healthy and good we were hopeful that pathology would say that she does not have GVHD. When Dr. Boyer came in to see Alice on rounds, he was optimistic that she would be clear of GVHD. A couple hours later he came in to deliver the news we were hoping not to hear. She has a pathology grade 2/3 graft vs. host, which is considered advanced, however, in a clinical setting she shows less severe signs than the results pathology indicated. Basically it means that her body is managing the GVHD better than what her labs indicate.
They feel the reason she has GVHD is because of the rapid tapper of the anti-rejection medication. It has been very tricky with Alice, the doctors felt they didn't have a choice regarding her tapper because she was threatening to loose the graft. Her total body chimerism is down in the 40 percentile currently. It's difficult to understand what her body is doing. Normally you don't see GVHD until the chimerism is almost all donor. Alice is not following the rule book and it's puzzling the doctors. The treatment for GVHD is adding immune suppressants, such as steroids and increasing her anti-rejection medication called cyclosporine. This is one giant step backward in her recovery (almost two months worth) and adding a complicated twist. Her graft will become even more fragile with the added immune suppressants.
Tyler and I are having a hard time sorting out our feelings, yet we feel hope that she will pull through...if the graft is lost, the thought of repeating transplant is overwhelming...especially in her fragile condition. Alice is a strong girl and will never give up easily...nor will we.
It's interesting how we naturally as human beings find something hopeful to hang on to when disheartening news comes our way. Quickly, we begin looking at all the advantages we have in our court. Her situation could be much worse, although we are concerned we feel that she has many good things going for her.
If anything, sometimes all you have to hang on to is hope, faith, and prayers.
When I tucked Natalie into her bed tonight she willingly and so easily put on her nasal cannula, and peacefully went to sleep....just one more thing to be thankful for. What a sweet thing that was for me.