Tuesday, March 31, 2015
We haven't learned a lot, but we are still here at MDA. Going to be leaving in a few minutes. We requested that Eli's most recent scans be mailed to all three places (louisville, houston, ny) 11 days ago. None of them have them, said internal mail takes many days - would have been nice to know that 11 days ago from somebody. So, we have not learned anything, except that we signed the consent for the NOAH protocol which is necessary to get anything started should he be accepted. We did bloodwork and they checked his port to make sure they could use it. He meets preliminary requirements, but they need his scans to accept him for enrollment. A review board meets Thursday which is what gives the yay or nay, so we need his scans here now. We are going to drive as far as we can toward Memphis tonight, get the scans from St jude ourselves, and overnight from memphis back to Houston for thursday, hoping to get eli in on that board meeting (will meet again on monday, but in cancer growing days, that is forever). We should know by thursday afternoon, or friday if he is a candidate. I am still not clear on where the "only 3 kids" came from, and that the protocol was closed. That was from a fb post on another page, so my caveat to anyone else is to find things out for yourself. We almost canceled our trip when i read that another parent said it was closed. It is certainly very limited (the lab will only grow cells for two kids a month which is pretty exclusive to kid 3 and 4 that have to wait a month, which continues to a total enrollment of 24. Time and paperwork.) But we were very impressed with everyone we met, and are prayerful for this option. We hope to get a more productive conversation going in New York. We also have Nashville lads to leaders on our schedule at the end of the week. We hope we still get to make that since the kids have been working towards it.