So, where are we?
First, a few updates. Zoe had a good day on Friday for her VP-16 dose. No adverse reactions this time, they gave her Benadryl at the start and did a 3hour drip instead of 2 or 4, and it worked out just fine.
Michelle was able to meet with Dr. W and the good new news is that Zoe’s immune system has made a sufficient recovery to put her out of immediate danger of infection from normal day-to-day life.
We are allowed outside. We are allowed to eat in (uncrowded) restaurants. It’s like Life 2.0.
The pertinent number, the one that gave us this new freedom, is her SEG Neutrophil count. Hers is 2.1, where 1.0-9.0 is considered normal. Great, great news.
- WBC: 6.2 (way up)
- RBC: 2.73
- Hemo: 8.3
- Platelets: 447k
Where does that leave us?
Well, right in the middle I would say. We’re now mostly clear of the danger from the onset of the disease, and with continuing treatment we should stay clear for a little while. The fevers are gone, the organ enlargement is gone, the histiocytes in her spinal fluid are gone, and her platelets are well clear of the danger of internal bleeding now.
Once we have confirmation about the genetic testing, we will know more about the Stem Cell Tranplant, but we’re working on the assumption that she will need one to be cured. We have a huge decision ahead, depending on test results, as I’ve mentioned previously. It’s a little scary, but we feel considerably better than we did a few weeks ago. We know more now, and we’ve had more conversations with our doctors to answer questions we didn’t even know we had back when Zoe was sicker.
Our next step is to meet with the doctors at Duke, ask our long list of questions, and try to come to a firm decision about the transplant. That should happen late next week, and we hope to get news on the remaining genetic tests “soon”.
In the meantime we’ll be keeping up with Zoe’s meds, checking in twice weekly with the hospital, and hoping for continued improvement.
And I’m (not so) secretly hoping the chipmunk cheeks take a hike too.