Those Difficult Thursdays

Thursdays are our clinic days, and in recent weeks Michelle has been going in by herself, feeling that there is no point having two of us out of commission for the day. She’s right of course, but I’ve come to feel that I’m not as in touch with what’s going on, so I’m in with her today. I’d be here alone and give her a break, except that she has to be here to feed Zoe pretty regularly.

Being in the hospital again, even for a day, brings back all the recent memories of Zoe’s worst days. Michelle has remained accustomed to it, but I’m feeling pretty stressed being here, having had a couple weeks away from it. Hopefully, we will be done with this phase soon. Our day is spent waiting and worrying about infection in the lobby, getting labs drawn and vitals, and then sitting in a curtained and claustrophobic observation room for hours while Zoe gets her VP-16.

Compared to her days as an inpatient, it’s not bad, but a sad reminder of what Zoe is going through. At home things seem almost normal many days.

We met with Dr. M first thing this morning to discuss a few things and check in. I’d sent an email to Dr. M and Dr. W on Friday to ask a few questions, foremost among them what contact they’ve had with the team at Cincinnati Children’s Hospital, the U.S. experts on HLH. It’s a touchy issue — I don’t want them to think we are unhappy with our care, we aren’t at all, but I do want to be sure we have the most current information for Zoe before we close the book on her pre-transplant care. It is a rare disease and I feel sure that new information can appear that could help her, given how poorly researched it is relative to other conditions.

We should hear back from Dr. Filipovich soon.

Vitals today:

  • WBC: 12.4
  • RBC: 2.82
  • Hemo: 8.8
  • Platelets: 781k
  • SEG Neutrophil: 8.6
  • Ferritin: 700

Great results overall. Her Ferritin is back down from it’s brief spike, and it is being attributed to the skipped etoposide week (to let her immune levels recover). This means we can continue to taper her steroids, and I have in hand the next few days’ doses, after which she will be done with it, hopefully forever. It will take time to burn off the extra weight she has put on and for her cheeks to go down.

This means we will put a plan in place to move ahead with the transplant fairly soon. If there is a bed at Duke PBMT, we could begin her “work-up” in the next week or two, putting us in the hospital for conditioning somewhere in early June. It’s where we want to be. Doing it during the summer lessens the impact on our work and lessens the impact on Maya’s preschool attendance.

By fall we hope to be having our best year ever as Zoe returns to health. In the meantime, it looks like our mean old Thursday visits will be coming to an end soon.

4 thoughts on “Those Difficult Thursdays

  1. Again, I can so relate. I don’t like going to the hospital for Julian’s visits. It reminds me of how bad it got and the uncertainty of life. Even reading your journal and seeing Zoe’s chubby cheeks reminds me of Julian’s trials. However, I keep reading because I want to know that Zoe is doing well and I makes me feel good that she is fighting, just as Julian has. I look forward to this being behind us.

  2. This blog is a gift, Evan. As you are planning ahead for your time at Duke, please factor me in as gopher, shopper, moral support-er or whatever you need. I’m only thirty minutes away and it is an easy drive. Zoe’s resilience and rebounding ability are substantial, and it bodes well for how she’ll manage the SCT. Love to all, Mara

  3. I appreciate your journal of your experiences of caring for Zoe. I admire your strength and the support you and Evan can give each other. I think about you often.
    Love, Brian

  4. Evan There are three of us here, all retired, that are waiting to help in any way we can. Please let us know how we can help. Transportation, grocery runs, cooking, Maya sitting, etc. We are here for you all. Love to all, John, Grandmom

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