Day +142: today we our visit to the Stanford EB clinic. The visits with the doctors were fairly brief, as they thought Kiira looked great. To show off for PT she even decided to start cruising today (walking while holding on to things) and wants to do it all the time now. They had some questions about the BMT, wondering if it has helped her, and though we don’t have the answer to that, we can say it hasn’t really hurt her, as far as know. The outcome of the visit: we will need start occupational and physical therapy every week and see a dentist at UCSF when she gets more teeth. The mouth is so sensitive due to EB and somehow it affects the enamel, causing rapid tooth decay so UCSF specializes in EB dentistry and hopefully we an try to save Kiira’s teeth. Going forward, we will visit the Stanford EB clinic once a year, since we will also be going to Minnesota once a year. However, we might get to do Scioderm Phase III trial at Stanford early next year so then we have to come every month for evaluation. Scioderm created, Zorblisa, a topical cream to help with healing and itching. We are excited to be a part of research and another opportunity to get Kiira some help, if she can get in the trial.
On another note, we heard from Dr. Tolar today that Kiira will get a boost of donor cells in January but he is trying to decide on the pretreatment regiment, meaning either more chemo or increased immunosuppressants. Her BMT is a part of a trial and so few people have had a BMT for EB that there isn’t a set protocol for boosts. I have so many questions but will wait to hear from them as I know it truly is trial and error to see what works best. We don’t want her to lose her transplant, so we pray that Dr. Tolar can make the best decision for Kiira to give her the best outcome possible.
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