Friday, October 16, 2009

A step closer.

Today we had a doc appt with both the hemtologist and the BMT doctor. His platelets have stayed at 41000 which is GREAT!! They ran a immune test on his B-cells today and will do his T-cells in 2 weeks. We should have the results to the B-cell test by then. They wanted to start him on bactrim but since Coty (my husband, Kyler's dad) is HIGHLY allergic to it they chose not to risk it with Kyler and put him on dapsone (I will fix it if that is spelled incorrectly..I dont have the script in front of me). The stem cell doc wants to do something within the next 6 months so..hopefully we can find a perfect match donor soon. So far the best we've found (given that Kyler has a rare HLA typing) is an 8/10 on a person and a 5/6 on a cord. He feels that if we dont find a better donor match we MIGHT consider the cord, but there are 3 more donors coming in next week and 1 was tested today, so he is going to wait a few more months to try to find a perfect 10/10 match on a donor. Please Pray that we find a match!! We got a ton of more info today but that covers the majority of it. He did absolutely wonderful during his blood work. He laughed at his ducky :-) and held his blanky. He weighs 18lb 9 oz and is 26 1/2 inches long. Great blood pressure and temp. Other than that he is doing GREAT. We raised his dose on Zantac which seems to be helping with the fits he was having from hurting and his tummy problems seem to be getting much better and he is now eating baby food 3 times a day and drinks a ton of formula in between feedings so he is very healthy in that aspect. We have another appt in 2 weeks but if we find something out before then I will update. usual Coty and I were each only a 5/10 not a good idea! Please Pray for Kyler and Pray we find a perfect 10/10 match! Love you guys!!


  1. Hey girl! Here's hoping for one of those donors that came in to be a match! You know, if they aren't, you might consider just waiting a bit. I know the doctor wants to do something quickly, but with Kyler's condition being so good, I'd be more scared to go with an imperfect match. Waiting a few months and searching the registry again might make a difference. And from everything I've read, it'd be best to avoid the cord, especially if the BMT team where you are is less comfortable with it. Our doctors told us that they'd done a few cord blood transplants with not great results, so now they avoid them if at all possible. Ayden's transplant was a 9/10 match and he (thank God!), as you know, hasn't really had any complications, and definitely no GVHD, which is the main concern with the "goodness" of the match. You've gotta do whatever gives Kyler the best chance of survival, and make sure the doctors are keeping that in mind too.

  2. Wondering how things are going with y'all. Did you nail down Kyler's mutation? Suspected XLT or not? How's the 'scum war going? Everyone healthy otherwise, I hope.