Day +104 - Battling Graft Versus Host Disease (GVHD). It started last week at clinic as a simple spot on Phoenixs knuckle then grew to an all over dry itchy rash. Initially, the doctor thought it might just be something viral causing her skin to be irritated. GVHD this late was unlikely in his opinion since she had a perfect match donor and had no issues thus far, but a combination of things proved to complicate things. Normally, a patient is still on some immunosuppression but Phoenix stopped a month ago to fight the EBV infection (Mono). Her counts were down last week which led to the suspicion of yet another virus but no fever transpired and she appeared fine. Every day since last weeks visit her skin has slowly morphed into patches of discoloration and dryness with blisters growing then popping and healing. Much of the rash resembles eczema and her body is red like a mild sunburn. Thankfully, the doctor is calling it mild and while GVHD can be life threatening it has been caught early and shes going back on immunosuppression meds and steroid creams to knock it out. Ad disappointing as this news was, there is a silver lining...HLH patients are commonly at risk for losing their graft and need 2nd transplants (docs words) but a little GVHD is a good indicator that her graft is holding. Mild GVHD is much better than the alternative. I was shocked that the doctor finally came out and said that kids with HLH often need more than one tranplant. This is something that seems common in the HLH community but never did I think the doctors recognized it and if they did Im wondering why they dont share those risks in the beginning? I suppose to avoid unnecessary hysteria from moms like me. (Im working on my anxiety and stress levels). Im pretty sure thats why they spoon feed me information. At any rate, just another small bump in the road. We are still headed in the right direction. Physical therapy is coming to the house now and is helping Phoenix get caught up with her motor skills and strength. She will be 9 months old Friday. WOW! I feel like the world stopped 7 months ago...maybe it was just my world. Feeding is still slow going. Shes learning to taste foods and enjoys salty items, like Spanish Olives which is Mariahs favorite. She wont bite or chew but she will lick and thats a good first step. She cut her 3rd tooth this past week on the bottom and I see the top 2 trying to come in. Shes really such a pleasant baby, although if you ask the dog she is quite sneaky. Every time Foxy gets close Phoenix reaches out and tries to grab her tail which sends Foxy dodging and running. When shes not plotting to capture the dog she is sucking her thumb which is bad but so adorable. Thanks for all your prayers and support. The good far outweighs the bad. I read an Anne Frank quote this week...something she wrote during the Holocaust Think of all the beauty still left around you and be happy. Pretty powerful! If Anne Frank could find beauty and happiness in those conditions I can certainly find them in mine.
Posted on: Wed, 29 Oct 2014 14:32:28 +0000
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