Checking In

After last week’s lower immune counts we had skipped the VP-16 dose for the week, so today Michelle is in the clinic “catching up” a bit.

Zoe’s vitals are back up nicely for the most part, with the exception of her sodium and ferritin. Her sodium has been hovering at a lower than expected count, 127 (where 133-142 is normal), and the doctors are not sure why. Michelle’s sodium intake is quite low, so we’re going to take their advice and up her Gatorade (and junk food?) intakes. More bouillon cubes please!

The ferritin count is trending back upward, a worrisome sign. Ferritin if you recall is one of the markers for disease activity, so we want to see that trending down or remaining static, particularly as we look to move ahead on the SCT soon. We do not want to see disease activity right on the verge of starting her transplant process. Hopefully we’ll know more next week, they’re doing another count today and she’s getting the VP-16, which should have an impact.

There is some concern that we might be seeing the beginning of drug resistance in that ferritin reading, and the feeling is that we will need to move forward soon on the SCT if that is the case.

Feeling a bit tenuous here. Low sodium can mean hospitalization, high ferritin could be a warning sign of a return of the active disease. Better immune counts are our silver lining at the moment. I really want to see her go into her transplant with all systems in top shape.

Vitals for the week:

  • WBC: 9.1 (5-19.5 normal, this is way up thankfully)
  • SEG Neutraphil: 1.456 (also way up, a positive sign)
  • Sodium 127 (133-142 normal)


2 thoughts on “Checking In

  1. Thank you so much for your updates………Zoe is in my thoughts and prayers…….and even though you must have a 1001 things to do……
    please know that your journal and videos are a wonderful way to educate and inform us as to what is happening………
    Michelle, I saw Harold yesterday and he told me to send you his love……
    Love and hugs,

  2. I know that everyone wants to see Zoe in top shape for the transplant, too, and we all know that you and Michelle and the docs are doing everything you can to get her there. MIchelle, check out chicken broth – I think some brands are loaded with salt and then you won’t have to eat Fritos [ unless you want to].

    IT’s wonderful to see her so engaged with her toys and doing all the usual three month old things. What a tough start she is having in her young life and equally, what an impact she and her family are having on all of us in terms of courage, love, vigilance, resilience and more. Keep remembering that you have a strong support group surrounding you, even when we’re often virtual rather than visible:).

    Love, Mara

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