Wednesday, January 8, 2014


As usual we are exhausted and overwhelmed by today's appointment in Cincinnati. Fiona doesn't have pancreatitis. Her labs from December didn't show any cause for her low lymphocyte (t-cells and b cells) levels. The labs that have come back so far from today show that her her lymphocytes are lower than last month. Unless something shows up on her genetic tests we don't know what is causing her immune deficiency. If nothing shows up on her genetic tests she will be having a bone marrow transplant. If something shows up on her genetic tests she will be having a bone marrow transplant.

I asked the doctor what was left as far as diagnosis. If her genetic tests show something that will be her diagnosis. If nothing shows up her diagnosis is unknown combined immune deficiency. When I asked what our course of action was he asked how we felt about a bone marrow transplant. This was the first transplant discussion that they didn't say, "we're not there yet."

We talked about how I think it is better for her to go into the transplant healthy. Because Fiona has full siblings who match her type of bone marrow completely there is virtually no risk to her. The chemo that they will use to kill her bone marrow is less harsh than what they use for cancer. I also told them that I would like for her to have a healthy, normal immune system by the time she's five.

Our only alternative to a transplant at this point is to wait. We wait to see if she gets sick and risk her going into the transplant sick. We wait to see if she has an autoimmune reaction and risk organ damage. We wait to see if her numbers get worse and risk opportunistic infections. Waiting is not in her best interest.

Her next appointment will be in February. We are taking Abbie and James (her sibling matches) to that appointment to be tested for the transplant. That is huge. That is the first step. This is becoming too real. I thought when we got "here" that I would be relieved. I'm not sure what I feel now. Dread? Maybe things will be better tomorrow after I sleep. At least the kids will be home tomorrow as a distraction.

The good news is that she looks almost normal, not so grey, not so pale, the dark circles under her eyes are getting better. She has more energy. I think it's a combination of a higher dose of Hizentra and starting amoxicillin.

I feel like we need a plan. Right now there are too many details to make a plan. We've talked about renting an apartment in Cincinnati. They told us today to expect to be in Cincinnati for 6 months.

Fiona's fundraiser

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