Life Goes On

Update: We have had a minor setback on the site, there was a virus problem with the software used here, which forced us to wipe out the website and restore everything to sure that it was fixed. Some pictures and other features are currently broken but will be updated when possible. Apologies to anyone affected.

Where have we been? Well thankfully, we’ve had little bad news to report, and for some reason remembering to report the good falls by the way at times.

Zoe has been doing great. She continues to progress toward weaning her remaining meds, which at this point are her tacrolimus (.6ml) and hydrocortisone (1.0ml) twice daily. She has very dry skin and rashes some days, other days is perfectly normal, but the worst of it for us remains the rashiness. Could be far, far worse, and we’re grateful for where we are and how far we’ve come.

Our only scare since the last update was a high fever incident, attributed to an unknown virus “going around”. Zoe had a bad night one night as kids do when they’ve caught something, but this time we were able to get a 104° temp at home. At that point we felt it was safest to head into the hospital.

Zoe spent about 24 hours in-patient to be monitored, but her fever broke fairly quickly the next day, and we were sent home. Scary, but we’re taking it as another sign that she is doing well to fend something like that off.

Beyond that, in the recent months Zoe has remained in preschool steadily two days a week, only missing occasional classes to fend off a cold. She’s fought off several mysterious cold-like events on her own. She also turned two and had a birthday with her first real party with her preschool classmates and her sister’s friends, which was a blast.

Our only other HLH related news to report is that we were contacted recently by CCH regarding the particular genetic variation that they believe was the cause of Zoe’s HLH. We are still waiting to hear more about the request, and I may have more to share later, but the gist is that they believe they’ve made progress toward being able to more confidently diagnose kids with this variation. This could help those coming along to have more surety in knowing if a transplant is needed, so we’re hopeful it represents progress in some way. More on that when we have it.

In other news, as a Christmas gift to Michelle (and the girls), I commissioned a painting by Michelle’s favorite local artist, Stephen White. It was intended to be a commemoration for Zoe (and all of us) having survived this horrible disease, and a reminder of how close it has brought us.

We continue to hear from and about other children who are struggling to survivie HLH, and our hearts go out to them. It is our hope that Zoe’s story can be one of many survivial stories going forward, and that in some small way she offers hope to those now embarking on this journey.




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.