For a few months people have been asking how Fiona is doing. We have been talking about starting a blog to keep everyone updated, and to help explain what this means.
Fiona has a combined immune deficiency. Her B cells and her T cells are defective. Her defective B cells cause her immunoglobulins to be low. Her immunoglobulin G (igg) is very low. The fix for low igg is replacement via IV(IVIG) or subcutaneous(sub-q ig). Over the past two months she's had three IVIG treatments. Next week she will start sub-q ig. The fix for her T cells isn't as simple. The only fix is a bone marrow transplant. Her numbers aren't low enough to justify the risk, so they are monitoring them for a few months to see what happens.
At her appointment in Cincinnati yesterday she had IVIG. They doubled her dose because her igg was dropping too low between treatments. They didn't give us much new information. We did find out that her low T cell count is not a result of viral suppression. That sounds like good news, but it's not. It means that the problem with her T cells won't go away on its own.
At our next appointment here she will have her first sub-q ig. After that we will do sub-q at home once a week. The advantage of sub-q is that her igg levels will be more consistent.
We've had a few people ask what they can do to help. Fiona's treatment is derived from plasma donations. If you have time, please go donate plasma.