Ups and downs today. Tyler was fatigued and wasn’t able to handle all his visitors without falling asleep.
There was some big excitement in the morning though when his friends from Connections Church surprised him with a visit from Chrystina Fincher. Chrystina is one of the lead singers for the Bigstuf Band. Bigstuf is a week-long Christian Youth Conference held in Florida each summer, and Ty has attended the past 3 years. So seeing Chrystina in his hospital room was kind of a big deal! Right after that visit he got video messages from Steve Fee and Casey Darnell, two of his favorite Christian singers, wishing him well.
After that he slept through his next visitors, but later on perked up again for the next round. As always, we are overwhelmed by how loved Tyler is!
I spoke with Dr. Donald Small this morning about Tyler. Dr. Small is the director of pediatric oncology at Johns Hopkins Kimmel Cancer Center and happens to be a leading expert in the specific type of gene mutation that is attacking Tyler. In fact, Dr. Small was able to clone the mutated gene so that it can be studied further. We are so thankful that Tyler is in such good medical hands here.
I’m learning a bit more about the whole bone marrow transplant process. It will actually likely take about 3-4 months to find a donor. They first need to identify Tyler’s type as intricately as possible. They will draw blood from family members to study our types and gain information about how Tyler’s type will react. It’s possible that during the family testing a donor will be identified, but not likely.
Once the type is nailed down, they begin looking for a donor. This takes a while because apparently, many people who register may no longer want to be a donor, so they have to make many calls. We will be meeting with the transplant team soon to get much more information about the next steps.
I came home tonight to sleep, only to discover that my two sisters-in-law had spent 11 hours at our house cleaning it from top to bottom. What a labor of love! I don’t think my house has ever been this clean. I think I’ll sleep well tonight.