Tyler, Ron and I met with one of the transplant doctors this evening. Feeling a bit overwhelmed right now, but we will try to summarize.
They have completed Tyler’s typing and have searched the bone marrow registry. They have 4 matches, all adults from Europe. Tyler is 3/4 German and 1/4 Irish, and since ethnicity matters with matches, the European connection makes sense. Three of the four are older adults (in their 40’s) and one is younger. A younger match is always better. The matches are about 90%.
The transplant team now begins contacting these individuals; at this point they have no idea if the donors are still willing, available and healthy enough to donate. If the donor is willing, they must run extensive tests, which will take many weeks.
There were also two cord blood matches, which are not as closely matched as the 4 live donors. We learned that there are pros and cons to cord blood donations – two concerns are that cord donations take longer to graft to the host, meaning a longer period of being immuno-compromised, and it’s a one shot deal – if Tyler needs another transplant down the road, the cord blood is no longer available. No word yet on the results of the half-match testing they did on Ron, Michelle, and me. But hopefully it won’t come to a half-match anyway.
Getting from now to the point of the donated bone marrow being transfused into Tyler will take 3-4 months, so we’re looking at a January or February time table.
We heard a lot of scary stuff about graft-versus-host-disease (GVHD), which transplant patients come down with as the donated immune system doesn’t recognize Tyler’s healthy cells and goes on the attack. GVHD can range all the way from mild to fatal. That wasn’t fun to hear.
Further overwhelming news for post-transplant is that the first 100 days after the transplant, our family will have to live within 10 minutes of JHH. Tyler’s social worker is already working on housing for us. We will have to be very vigilant for signs of infection, and once one appears, we have less than 30 minutes to get him medical attention during this period.
After the 100 days, Tyler should be able to go home, but won’t be able to resume a “normal” life for 6 to 12 months post transplant. This means no school, no church, minimal forays into large crowds.
Wow.
Our hearts are breaking for Tyler. He will not be able to be left alone during this period; again, due to having to be vigilant for signs of infection.
On a slightly different note, we did discover that at the end of this month, when Tyler’s blood counts recover enough, he may be able to come home for a few days before getting readmitted for cycle two of chemo. That’s very exciting! He won’t be able to go anywhere other than home, but at least he won’t be in the hospital.
So, the name of the game right now is…wait. We’re waiting for the donor, waiting to see how he has responded to his first course of chemo, waiting to see how he responds to his next course of chemo, waiting to see how he does post transplant, etc.
Thank you for your continued prayers, which we will need for a long, long time. And thank you for your patience with updates as sometimes we will have nothing new to report during the long waiting periods.