Post BMT Day +92
Post BMT +92
Clinic day today. Tate knocked out PT like a champ. She’s starting to walk more and better, pushing the wheelchair in front of her until she is tired. She’s having quite a lot of foot and ankle pain just from using them more. The lack of muscles in weakened feet cause your arches to collapse. So…she got some orthotics for her shoes until her feet are stronger. Her ankles are also very stiff (an issue that started pre transplant) so we added some supports for that as well. They’re pretty uncomfortable, so she’ll work up to using them all the time. Eventually, she’ll be able to ditch them.
Tate received her monthly pentamidine infusion today. This prevents a rare but very serious pneumonia. She used to get an inhaled version of this, but struggled with a bit of a reaction so now it’s an hour IV infusion…tastes much better!
Labs were not improved from Tuesday. Her liver enzymes are about 20 times higher than they should be. Gut inflammation markers about 70 times higher than they should be. Platelets are dropping, lymphocytes climbing…..this all points to Graft Vs. Host Disease again. This time of her liver. The steroid wean was stopped and a new med was started to see if there’s any improvement in labs over the weekend. If not, they’ll tag on a liver biopsy with her bone marrow biopsy next Thursday. The results would guide her team to the best treatment. Either more immune suppressants or more steroids, or both. Neither are great, but the steroids are so tough. We’re really praying we can get her off those and not need to increase. There was discussion that she is showing steroid refractory as she developed both the skin and now liver gvh while on steroids. Next week should answer more questions.
Tate is still feeling decent. The only symptoms that typically accompany gvhd of the liver are fatigue, itching and jaundice. Tate is exhausted. But she also isn’t sleeping well due to the steroids. Her skin is super ornery but I’m hoping it’s related to the skin gvhd. Her team thinks otherwise. They obviously know more, I’m just really praying this isn’t more gvhd. Adding in more organ systems to her gvhd picture is concerning. Tatum was still testing positive for cmv last week. It IS possible this is cmv in the liver. Again….waiting on more tests.
Despite the new hurdles, we see Tate making progress in other areas. She is getting so much stronger! She has eaten bits of food everyday. She is drinking more. Her nausea and vomiting are finally controlled with meds. She has minimal stomach pain so we think the ulcers are healed. Her gut is showing signs that it’s starting to wake up a bit. All things to give thanks for.
Tomorrow….we see pain. My prayer there is that migraine meds will fit in with the big med/body system picture. The migraines have become a daily challenge that we could use some help with.
Thank you for continuing on this journey with us. We continue to feel carried by your prayers and love.