Day +236: So what does a loss of a bone marrow transplant mean for Kiira? It means we are back at square one. It’s as though we just learned she has severe RDEB (based on genetics and biopsy–if anyone out there has no collagen VII production and doing well, please let me know, because I can’t find that in research!) and there’s nothing we can do for it but maintain good nutrition to aid her body in healing the constant wounds on her body and keeping up with bandage changes and wound care to avoid injuries and infection.
The loss of a transplant does NOT mean Kiira is in bone marrow failure, which definitively requires a second transplant and is very serious. Kiira’s own bone marrow seems to be functioning fine, as are her other systems, despite low doses of chemo and radiation prior to her bone marrow transplant. We don’t know if a second transplant is an option for her. First, she only had one complete match. So any other match would be inferior and maybe less likely to work. Second, a second transplant means putting her through that much more chemo and radiation. My guess is that it would be even more dangerous the second time, but it has been done many times in the history of BMTs and 3 times in EB patients. Third, despite her diagnosis, she is doing quite well–her wounds are not life threatening at this time.
The BMT is the only systemic approach at this time to help stop the progression of EB. We still believe it’s a good choice for severe EB cases. Patients have been told for over 20 years that a cure is on the horizon. While they’re closer than ever, the research on animals and then human trials take years to complete. So while you wait, to stop the progression as early as possible, is a good thing. It really sucks that the BMT didn’t work for Kiira, but that’s not a reflection of all BMTs, EB or the BMTs ability to help other patients. I get that it’s not for everyone, but the research and theory behind the BMT to help with numerous genetic conditions like SCID, EB, and Osteogenesis, to name a few, is valid and we do not regret our decision to do the ONLY thing available to help Kiira.
Now, all we can do is wait while this horrendous condition takes over our beautiful baby girl. RDEB is progressive. It doesn’t go away. It doesn’t get better with age. So we pray that she doesn’t suffer too much pain, debilitation, or the many other things to come. And pray for a cure.
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