Beachlily - our friend's son with ALD (update)
And anyone else interested:
I was reading through Anele's thread and saw where Beachlilly had asked me to update on our friend's son.
Blake had his bone marrow transplant and did very well. Too well, in fact. 20+ days after the transplant they discovered engraftment had not taken place. They did not make him sick enough and his own system killed off the new cells. Blake has enjoyed a few weeks of recovery, gained a little weight, and moved into the Ronald McDonald House (they are at Mayo) with his parents. Monday he was admitted back to the children's hospital there as an inpatient and he started chemo yesterday. He'll have 5 days of chemo, one day of full body radiation and then a second bone marrow transplant. This transplant is from a living donor with a full 8 out of 8 point match. The first transplant was from umbilical cord donation. Mayo apparently has a huge umbilical cord bank. We are hoping that this time it works. He's on a different chemo and he will probably get much "sicker" and feel much worst this time around, but they need to "kill" his own immune system as much as possible. If you are so inclined, please pray or send your good thoughts for Blake that this works. He has ALD which is similar to ALS. He does not have alot of symptoms yet, but it is terminal unless stopped. He would probably not live past his 20's. If successful, the transplant does not repair any (nerve) damage already done, but stops the disease. Blake is 14 years old with so much ahead of him. He is also an only child, so you can imagine how his parents are feeling. This is an excellent program and they are having very good results, so we are very, very hopeful for Blake.
Thanks Beachlily for asking about him!!