As you know Tristan was diagnosed with CML & ALL 7/30/22 and spent 8 weeks in hospital for treatment . He underwent his stemcell transplant 11/10/22. Unfortunately he has had a long haul having been in/out of ICU. His pain was difficult to manage which led to severe anxiety. Apparently when the new stem cells "engraft" into the bones (especially long bones) it is very painful. Next he developed a rash all over his body. He has been having persistent nausea l. ,vomiting & diarrhea. At one point he was in 12 IV drips including TPN. Mucositis formed which wss very painful and he hsd been unable to eat. Due to the persistentance of his symptoms his medical team thinks it is Graft Vs Host Disease GVHD.
GVHD is A condition that occurs when donated stem cells see the healthy tissues in the patient’s body as foreign and attack them. GVHD can cause damage to the host’s tissues and organs, especially the skin, liver, intestines, eyes, mouth, hair, nails, joints, muscles, lungs, kidneys, and genitals. The symptoms vary from minor to life threatening. We are still waiting on results from Tristan’s tests from Friday (endoscopy, colonoscopy & bone marrow biopsy). He is being treated with steroids & cyclosporine for likely GVHD. Poor baby has a rash all over his body, itchy,pain, no appetite & GI issues. He has been very emotional lately. He is seeking solace from his squids & us.
He is a damn strong kid & we will get him through this 🙏
He is now day 32 post transplant abd we are working hard to get him strong enough to get home. We are hoping to get him home before Christmas. He will have a picc line & iv fluids so will have a pump requiring VNA.
He is making small progress eveey day. A huge thanks for your support! If he continues to progress we aim to get him home by possibly end of the week week! It will be do good for his and our mental health!
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