Saturday, September 6, 2014

making a plan

This weekend Christian and I are fasting and praying. I'm tired of our no diagnosis limbo. Everything I read says that transplanting early is better than waiting. So far she doesn't have any major illness, but how long will it be before she does. I don't want to risk her going into a transplant with a virus. On Monday I'm going to call Cincinnati to set up an appointment to present our plan. I'm going to ask for a thymus biopsy so we can see if that is where the problem is. If her thymus looks normal I'm going to push for a transplant. According to the Immune Deficiency Foundation, "Fortunately, the success rate of stem cell transplantation, particularly for patients without an HLA-matched sibling donor, has improved substantially over the past few years so that the risk of this treatment has become much more acceptable for less severely affected individuals." Fiona has an HLA matched sibling, so the risk is even lower.

Yesterday the middle school sent home a letter saying that they have had a case of Shigella at the school. Shigella is a bacteria that causes a fever and diarrhea. It's not really serious, but it is resistant to the antibiotic that Fiona takes.

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