Day +300: I’m not sure there is a point of still counting how many days post transplant we are since we might as well consider Kiira back to pre-BMT status, but 300 days… At this time last year we put our house up for sale to prepare for a move to Minnesota. We left everything we knew to give Kiira the best chance available at this time. Now we face the same decision–do we put her through another bone marrow transplant in Minnesota? The option is available to her and we have a call scheduled next week with Dr. Tolar to answer our long list of heavy questions. It doesn’t help that we can’t find any families who paved the way for us, so this time we have no one else to ask about their experience with a second BMT.
Despite the very difficult decisions we face, we celebrate that Kiira finished her immunosuppressants last Friday. Although we are supposed to be careful about being outside or around too many people for another 6 weeks, she got to play with her sisters in a wagon and she LOVED it. It was so fun to see her being out and doing things they do.
Kiira is still pretty happy but started throwing frequent fits, especially at meal time. We’ve already had 10 months of feeding therapy, and come so far, but this is just the next challenge of childhood. She also fights us popping blisters and yells “don’t touch!” Kiira has been injuring herself a lot lately, but behind her smile and strength to try her best to be a normal kid, these wounds are always hiding. EB is a brutal life sentence.
We ask for prayers to help us make the best decision for Kiira and our family and for Kiira’s skin to get stronger. Thank you!
