Day +16

Everything is going well here.

Zoe had physical therapy and she’s ready to explode we think, now that she’s starting to feel better. Once she loses a bit of weight she will likely have an easier time with the developmental steps — sitting on her own, holding her feet, rolling over.

She is sitting mostly unsupported, just with a hand at her back, working on her tripod. She can roll half way over, but her little legs drag her down, keeping her from making it all the way. She is trying, however, and at this point I think that’s what we want to see. She knows what to do but the circumstances are holding her back a little.

Zoe’s WBC was 0.3 (300) today. Down slightly, but good news overall since she is holding her count. If she remains at 0.3 or above another day or two we’ll have met another milestone on the way to engraftment.

As I mentioned yesterday, we’ll be focusing on her ANC for awhile. The first goal is 500 for 3 or more days. Today her Segs were at 48 with no Bands reported, which means our ANC calculation looks like this:

(SEG +BAND) x WBC = ANC

(.48 + 0) x 300 = 144

On on!

7 thoughts on “Day +16

  1. There’s something different in Zoe’s face in the picture today. She radiates a vital and vibrant energy; less tired, more joyful. Her inner wisdom is onto something :).

    Fabulous news. Love, Mara

  2. We wish you well. My son has HLH. We live in Atlanta. He is 23 yrs old, and no one can explain how he got this horrible disease. No EBV or genetic positive results. We are in week 16 of the HLH 2004 protocol. You are in our prayers-

  3. Stacy,

    I’m sorry to hear it, but thank you for letting us know. Please feel free to email me if you have any questions or if there is anything we can do to help.

    Thanks everyone

  4. Evan,
    I noticed a difference in Zoe’s picture today too.
    Id been busy so I missed a few days of updates, and see in a few in a roe its really notable.
    It seems like a good sign. I cant wait to hear stories when shes 9 and you are showing these pictures and she hates you, mwahahah.
    “DAD OMG NOT THOSE AGAIN!”
    Shantih

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