When Nadia was first diagnosed with bone marrow failure, there were many possible causes. Some more unlikely than others. Early on in the process the geneticists were considering Fanconi Anemia. It was a long shot because, besides bone marrow failure, Nadia did not have any of the other symptoms that are common with this disease. At the time Nadia did not have a definite diagnosis, so they decided to explore this possibility. It took a long time to get the results, and in early January we were told that Nadia does not have Fanconi Anemia. The first good news of 2014 – keep it coming!
Nadia has been determined to be high risk for RSV, because her weakened immune system makes her more susceptible to catching this virus and also makes it harder for her to fight it off if she does catch it. So Nadia is eligible to get periodic (about every 4 weeks) shots to help prevent catching this virus. Today she had her second round of shots. It did not go great.
She gets one shot in each leg at the same time. Today one of the nurses did not restrain her leg well enough and she moved the leg quite a bit during the shot. Tonight she had a lot of trouble walking on that leg and the area where the needle went in felt kind of hard. We were worried that there might be some internal bleeding from the needle damage in combination with her low platelets, and that we might be heading back to the hospital. With a bit of urging from Mom and Dad, and a few hours, her leg seemed to loosen up and she was walking OK before bed.
Tomorrow 3 of Nadia’s cousins will give blood samples to see if any of them are a better match than the partial matched cord blood we have on hold. In general, Nadia’s health is holding steady and we are still planning for transplant in February.
Judging from the picture below, it looks like Children’s will have a new specialist soon!
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