Apheresis Round #2

Elise and I are headed back to NIH on Tuesday for another try at apheresis. This is the same process that stem cell donors go through to donate their stem cells. In Elise's case the cells will be frozen and used as an emergency backup in case the donor cells don't engraft properly. It's an unusual step and they told me that they've never had to use the backup, but it's worth any additional piece of mind we can get at this point.

This is round #2. We tried this once already in late February but Elise's stem cells didn't "mobilize" sufficiently; that is, they didn't migrate from the bone marrow into the blood so that they could be collected. The doctors think it was because she'd been taking a medication (anakinra) that they have little experience with in the transplant setting. They'd stopped the suspect medication a week before the first round of apheresis but that wasn't enough, so this time we stopped the anakinra injections a month prior to the apheresis.

So Elise has been happy because she hasn't had to endure the anakinra injections (the serum is ph acidic to it burns for 5-20 minutes after injection). And it was timely because we took a vacation to Orlando over spring break and we didn't need to fuss with daily injections. But the break is over: we start GCSF injections on Sunday until the apheresis process is complete. GCSF causes the stem cells to migrate into the blood stream for collection.

Apart from apheresis, in general things are moving along. I swapped emails with the person at NIH who does the donor matching and she indicated they should complete down selecting to a single donor (from the initial seven "10 of 10" matches) in the next week. This will lead to a more concrete transplant schedule since the donor may have other commitments during the time frame we've currently targeted for Elise's transplant. Then we can start more detailed planning (like lining up an apartment in Bethesda).

Elise, Becky and I are all becoming increasingly anxious. Elise's anxiousness has been compounded by being away from school for 2 rounds of apheresis. It's affecting her grades and this makes her even more anxious. Becky got approval to take leave from the office during the transplant (they are exempt from FMLA because they have a small office). But they need to find a "traveler" physical therapist to fill in behind her or the office won't function properly and this uncertainty isn't helping. As for me, my office agreed immediately to let me take leave. In fact they've bent over backwards to help, even offering to let me telework part time which would spare some of my leave. They have even organized a bone marrow donor drive! I have plenty of leave built up, but staying partially engaged via telework will probably help my sanity. But I'll be leaving behind the office and my primary duties there and I really don't feel good about it. So for all of us, our work ethic is creating anxiety. I guess that's a good problem to have.

So we're continuing to move forward. Today Elise and some of her Girl Scout Troop 56 members are hosting the culminating event for their Silver Service award: a "Me and My Dog 5K" to raise donations for the local animal shelter. Should be fun.