Elise and I went to NIH this week for the apheresis procedure. The plan was to collect her stem cells and store them as a backup in case the donor cells don't implant - her own stem cells could be used to reboot her immune system. It's really a backup to a backup because the non-myeloablative conditioning regimin they plan to use is designed to leave some of her immune system intact. What remains should be able to recover if the donor cells don't engraft. So this is really a remote risk mitigation procedure, and I'm told most other transplant centers don't take this step.
In summary, the procedure was cancelled because her stem cell count didn't rise in response to the special meds they use so there was little or nothing to collect. Bummer.
At this point the team thinks the problem Elise encountered was one of two things: 1) the anakinra injections she's been on interfered with the GCSF injections even though we'd held the anakinra for 2 days before starting the GCSF; or 2) her body just doesn't respond to GCSF like most people. They don't have any experience with anakinra, but they did suspect there would be some interaction (which is why they stopped it 2 days prior).
So the plan now is to either try apheresis again in 4-6 weeks (withholding the anakinra for 2 weeks prior vs 2 days) or just skip the collection of the backup stem cells. The latter makes some sense since it's really a backup for a backup, and in fact they've never had to use it. But the overall number of situations where they might potentially need to use the backup are real low (2 cases of non-engraftment), so statistics can be computed but probably aren't relevant. Becky and I are leaning towards the former (ie redo the apheresis process) simply because Elise seems to always fall into the 1% who have problems. We call it "Bechtel Luck".
Elise was pretty upset when they decided to cancel the apheresis. She was exhausted from getting a 9pm injection of Plerixafor and then woken at 4am for the last GCSF injection, and then bloodwork at 6am with a nosebleed in between. She wanted to know why they didn't just go directly to a bone marrow harvest process (which is an option, but painful and very invasive). She just wanted it to be done and over with. The good news is it meant she had really read the consent paperwork because this approach was listed as an option, but we'd never discussed it.
We rescheduled our travel and came home a day early. As a result Elise was able to get a day of school in this week and also attend a dance on Friday evening at the teen center.
So this all sounds like a wasted trip, but I don't feel like it was. First off we had an hour conference with the transplant team. We went through the process and all the ins and outs. They answered questions we'd dreamed up over the past many weeks and in general reduced my stress level a notch (from 11 to 10 on a 10 point scale). Becky was able to dial into the conference and hear directly what I did so we can compare notes. Also, we got a few days of practice at being inpatient in the wing where Elise will be living for 6+ weeks. That gave me a good feel for what to plan for. And lastly, Elise met another 13 year old girl from New York with an immune deficiency. They became quick friends and have started texting one another.
So I wasn't as disappointed as Elise, but then I'm not the one being poked and prodded.
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