Well, we're back in CA. It was so cold when we were getting on the plane that they had to de-ice the wings... and it was sunny out. Never had that happen before. Beautiful day... on the inside!
We got back to CA this afternoon, and honestly, it felt weird, again.
It felt like we left behind Bella a second time somehow. When we visited the Ronald McDonald House, all our strollers and car seats were still in the atrium. Just seeing Bella's car seat just sitting there empty, then leaving it, again. Now, that was Friday, but it really snuck up and hit me again today. Yeah, it's nice to be back in pleasant temperatures, but that emptiness... just felt it again.
Ali starts her first day of her new pre-school tomorrow, and we again adjust to our 'new normal.' The grief is actually hardest in this house. That probably makes sense. This was Bella's stomping ground. I remember the day we came home from the NICU with her. I remember the day we came home from the PICU without her. While I know that parents all over the world have felt this same feeling, my hope is that as few of you out there ever have to experience it. This is why we are so consumed with funding the docs in MN. All I can say is, as I read your questions, I got so excited to share the answers. I'm not going to get into all of them tonight. The idea is that we create a FAQ page here so that as many people have as much information related to the study as possible. Okay, maybe I'll spill a little.
In short, the protocol is changing for the youngest patients. EB patients displayed a very different reaction to chemotherapy than any other disease population in the transplant milieu. There is something else at work; Dr. Tolar speculates that perhaps the Collagen VII gene is expressed somewhere else in the body that we haven't yet studied besides the skin. See, now that immunologists and transplanters are looking at EB, they are looking through their lens. The only lens EB has been studied through till now is essentially the dermatology lens.
I need to say that a different way.
What you see is based on the lens (or context in this case) you see through. A dermatologist won't think to ask the same questions as an immunologist and vice versa. So, having the team at the U of M thinking about solving EB, well, they ask a completely fresh set of questions about the pathology of EB. THIS is why the U of M is breaking the new ground (as usual being the pioneers that they are) in EB.
Also, YES, the treatment breakthroughs for EB will generalize out to other diseases. This is how all adult cancer treatment arose... from the treatment of childhood leukemia. The immediate areas of impact include autoimmune diseases of the skin, burns, and aging of the skin.
There are also two completely new concepts for treatment that involve using the patient's own stem cells, NOT a donors. This would dramatically change the danger / success ratio for transplant. They still want to identify the key stem cell in donor derived transplant and pursue essentially three paths to the finish line simultaneously. However, without the funds to do it, it is all just ideas on paper.
Alright. Man, it just makes me feel better just talking about the work up there. It gives me so much hope. There is more to share, but not right now. I remember finding out about the prognosis for a life of EB, and I don't want any couple to feel the feeling I felt that day. There is hope. For the countless parents and children till now who had none, I honor you by making sure this possibility we stand in front of doesn't fall to the wayside.
Thank all of you for still sticking with us in this journey to a cure. There is no turning back now, baby! NO turning back.
P.S. Anyone you know that hasn't read the blog, and you think would want to be part of a cure to a childhood disease? Invite them to come follow the blog as well! Thanks!