Hi Deb,
I’m new to this list but not new to the experience of transplant. My daughter had a MUD BMT 20 years ago this November. She is 40 and enjoying life on the other side of the experience. Back then the internet was still pretty new and we had a list serve email system for supporting each other. As for mouth sores, I would give her Bio-K probiotic. Even on the days she didn’t want to eat, she would swish it in her mouth. She never had a problem with mouth sores— only one the entire treatment. The nurses at City of Hope would come in just to look at her mouth. She had only one day of TPN and maintained her weight. Interesting that ice chips is the go to suggestion now. Of course our shared information was not studied enough to be evidence based and since no drug company can capitalize on it, there was no funding to study whether the replenishment of good bacteria is what made the difference for her. Yes, she have Gvhd but she was off of steroids within the first year and has made a beautiful life for herself.
All the suggestions bring back memories. I will be following her with a stem cell transplant for myeloma in about 4 months. Mine came on just as I was retiring and starting the adventures and freedom of making it to 65. So grateful for the continued progress in treating these diseases. Life goes on and soon this will be a footnote to a full life! Sending you healing and comfort as you approach this time.
Oh, and audiobooks really helped pass the time. Back then they were CDs 🙂