I received a letter and spoke with a doctor from Seattle concerning Granton's bcell test. It turns out that his b cells are not responding to the T cells--as we guessed. He will either stay on IVIG the rest of his life or get another transplant. Daniel and I have talked about waiting until Granton is old enough to have some input of his own before we decide to get another transplant. In fact, we learned of a family in Florida with a very similar case to ours. They even had a second baby with SCID. Anyway, the doctor said that when their first son turned 7 or 8 he agreed to be transplanted again. Actually, his graft was starting to fade, as well, due to the lower conditioning (chemotherapy) he received like Granton. I asked the doctor if she expected the second graft to fade over time, too. She didn't know. I'm guessing that the amount of conditioning for the transplant has a lot to do with it's lifespan.
Also, when I asked about Granton's b cells coming back on their own she said that it is not likely, especially this late in the game. That is actually a relief for me to know since I've been thinking that they possibly could. The bacteria phage is confirmation of this. And, she said that hospitals are starting to screen more babies for SCID...pretty soon every state will legally have to. In California 1 in 50,000 babies are diagnosed with SCID and the disease is not as rare as it used to be.
So, we definitely got some good answers and will keep doing what we've been doing...trusting in God and in the great doctors he's provided for our family.
Jenni
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Thank you so much for the update. I continue to pray for your family and am glad to see that things are going well for you all. Will continue to pray for good progress. Please let Paxten's family know I am keeping them in my prayers also. God bless you all and keep you well.
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