Tonight we left for Stanford because of an appointment with the EB clinic tomorrow at 8:30am and it’s a nearly 3-hour drive without traffic, about 6 hours with traffic. Another doctors appointment, another missed birthday dinner, another drive and more coordinating care for the other 2 kids, but we made it! The trip brings back so many memories of our Stanford trip from last December. We were so new to dealing with EB and the trip was filled with anxiety and hope. We left there with new knowledge of hand wrapping and what to expect down the road from EB, but also in tears, feeling our only hope would be a bone marrow transplant, despite their misgivings about it. Stanford has its own trial, and its eventual application should significantly benefit chronic wounds, but EB affects every body system in some way. A skin graft for Kiira’s hand wouldn’t fix her almost inevitable esophageal strictures, or inability to absorb nutrients, or keep her teeth from falling out. It’s not a systemic treatment, but EB is a systemic condition. The only hope at this point is a bone marrow transplant. I remember thinking how scary and drastic that seemed– to put my otherwise healthy child through chemo and radiation? To wipe out her immune system? To move to Minnesota for a minimum of 4 months? — now we face this Stanford visit being on the other side of all that scariness of the unknown and all the planning. No, Kiira’s EB is not gone, but I feel a peace knowing we did all we could for her up to this point and she is happy and thriving. I hope it can slow the progression enough that someone can find a cure. I don’t care whether it’s Stanford, Minnesota, Cincinnati, or whoever, as long as someone is working on it. As long as someone cares. Last weekend David Spade hosted Rock4EB, a concert by Ed Sheeran with a ton of celebrities and EB families in attendance. I don’t usually get caught up in celebrity life, but they pull some weight and funding that the average person can’t and I love that EB has caught their eye.
Last year we also spoke to the retiring professor of dermatology and pediatrics at Stanford, Alfred Lane, who spent the past 20 years trying to find a cure. He came to see the “famous Kiira” because her local news story aired that day and had circled around the world and Yahoo! News called him for an interview about it. That news story changed our life and I’m so grateful for the love, support, donations and prayers we were (and still are) shown because of it.
Meanwhile, we are still waiting to hear about our Minnesota trip and whether or not Kiira will get a boost of donor cells. I’m still not even sure a boost will help increase her CD15. The process over the past year sure has tested (and hopefully grown) my patience and I know we will always be waiting for the next visit, the next blood test results, the next day to see how much EB will affect Kiira’s life going forward. I have to keep reminding myself to have faith as we wait patiently.
To end on a note of thanksgiving, we were able to stop by my aunt and uncle’s house on the way here to see my cousins, their kids and the newest addition to our family. I am so thankful for my amazing family!
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