7/14/18 Day +73 TMA?

There are many complications that can arise from a bone marrow transplant. Reese was so blessed to engraft quickly, on her own, and stay safe from viruses or other infections during this tender time. But then, shortly after, she fought her battle against VOD, a dangerous situation that had her transferred to the PICU, and she came out on top and recovered really well. A few days before our early June discharge she was diagnosed with gvhd, and this battle has proven to be a marathon. We are making strides in the right direction, but we have a road ahead of us, still. The third complication I hate that I have to mention is TMA. Thrombotic Microangiopathy. This is damage that can occur in the smallest blood vessels inside many of the body’s vital organs, usually the kidneys. Over the past few days the doctors have been discussing the possibility that this third beast is attacking little Reese. At this point it is “mild” and the doctors are watching it and making little adjustments here and there to prep for the possibility of a war. Everything is very complicated and a balancing act. I will give you a snapshot: Reese has a CMV reactivation, that is not hurting her, but needs to be controlled by the drug Ganciclovir, because Reese’s own immune system is being suppressed by the steroids, which are being used to fight the gvhd, so it can’t knock out the CMV. Well, Ganciclovir is suppressing Reese’s new marrow, causing her counts to drop. She can’t be switched back to the more-friendly-to-marrow Foscarnate because Foscarnate is hard on the kidneys, and this is where the TMA would wage it’s war. Meanwhile, the tacro that is suppressing her t-cells to aid in the gvhd battle, is the most likely cause of her TMA. But when they weaned the tacro slightly to take the edge off the TMA, her gvhd flared. Does it sound confusing? Are you thinking, poor Reese (and I’m glad I’m not a BMT doctor?) Yes, this is so hard. She needs to CATCH A BREAK!!

One of Reese’s little friends is coming to visit. During her bath, her and I were chatting about it, and I wanted to get her feelings on a visit.
So I asked her, “When should Maddie come here?”
Her first response was after her nap. 🙂
Then she thought about it and said, “Mommy, I am having a bad day. I don’t feel good.”
I said, “Yes, we should wait until you are having a good day for friends to visit.”
She thought about it for awhile, and then in her innocent little voice, she replied in a whisper, “But Mommy, I don’t have good days?”
My little warrior. It has been so long since she has felt well, in her tiny little world, I fear she can’t remember. My sweet girl needs things to go her way, starting now!

I go to bed praying for her breakthrough, and the end of the BMT complications. At the same time, I am thanking God and her doctors for the second bone marrow chimerism that came back 100% donor cells yesterday and asking for a perfect 0.0 in her mutation report, due back in two more weeks. This is where it’s at- we just need to get her past this bone marrow transplant and into the sunshine, on her own two legs!

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