We traveled to NIH on Tues and checked into the hospital that night. Elise got a private room because she'd tested positive for enterobacter bacteria during the last visit and this meant she was on "contact isolation" until they could retest and she comes up negative. They do routine periodic screening of all inpatients for a variety of things that pose a hazard for immunocompromised patients. Both Elise and her roommate during the last visit tested positive for something. Apparently it's not uncommon. It's kind of a pain, but like I told Elise, we'll be very happy they take these precautions when she's going through the transplant this summer.
After several hours of Animal Planet TV shows, they let us sleep until the 6 am wake up call for GCSF injections, blood tests, and then the never ending rounds of all the various medical and support personnel. I'm very impressed with the staff at NIH: they are all very caring and don't mind all the questions I ask (at least they never seem bothered). But thank god they have a Au Bon Pain in the lobby outside the wing Elise was in - a latte was what I needed to start the morning.
Based on the results of the blood tests Wednesday morning at NIH, the Dr's knew it probably wasn't going to work out. Elise's white blood cell (WBC) count was up but not as high as they'd anticipated and so the likelihood of collecting enough cells with the CD34+ surface marker (i.e. the subset of WBCs that include stem cells) was low. By the early afternoon they'd gotten the CD34+ cell count back and decided it wasn't worth putting Elise through the apheresis.
So we packed our bags, changed our flights, and came home late Wednesday night. Out to the east coast and back in less than 48 hours. Not a record for me, but pretty close.
Not all is lost though. They've updated the study protocol to allow Elise and others like her (i.e. those who can't produce a "rescue" backup set of stem cells for some reason) to participate in the study, so she'll be able to go forward with the stem cell transplant. As they've said multiple times, they've never needed the backup because the study uses a non-myeoblative protocol, so her own cells should be able to recover if the donor cells don't engraft. Still it would be nice to have a backup.
As usual there were at least a few positive things mixed in with the negative: 1) they've decided to forgo anakinra injections and stick with prednisone to address her colitis until the transplant; and 2) coming home early means that Elise can go to the "Touch of Class" Dance tonight. Both are good news to Elise. The anakinra injections were painful and she really disliked them (so did Becky and I). The dance is the last one this year and she was bummed that she'd have to miss it. When she first heard that the apheresis was off, Elise was pretty upset (she hates missing school). But then these two positives became apparent and her mood turned rosier.
We also heard that they've down selected to a single donor and are trying to synchronize donation schedules. Once this is complete we'll have a more firm idea of the transplant dates.
As of now we have no more trips to NIH scheduled until we leave for the transplant in May. Between now and then there's lots to do and prepare.
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