Day +34

Still in the hospital, it’s looking more and more like we’ll be here ’til next week.

Zoe continues to have some discomfort, her cell growth has been through the roof on any days that we get growth factor. She went up to 23.8 WBC today, with lots of bands this time. She drifts down about 4 per day in her count it seems typically, 11 to 7 to 3 for example, then she gets growth factor and shoots back up. Those days are difficult, but getting better. 23 is our highest yet though, her ANC yesterday was 21,182.

We’ve been getting day passes, but she came back in with a sniffle yesterday and the doctors recommended we skip it today, so we are playing it safe. Her weight has also been up a little, but she’s also been nursing a little, so we’re not sure if that’s the reason for the gain.

Regardless, we’ll be keeping her in for a few more days until everyone feels like the risk of fluid retention is gone, and she no longer needs any pain medication beyond Tylenol.

Generally things are looking up. We’re roughly on schedule here, she’s engrafted, and with a good chimera result we’re just trying to work through the last remnants of mucositis and the pain of cell growth.

Michelle and I are truly exhausted, I think we’ve been running on adrenaline for quite some time now. With the most recent test results there is a bit of tension release going on, and with it fatigue as things catch up with us. Whenever we do get discharged, here’s hoping we can find a way to just sleep for a few days.

Still, the likelihood that we’ll all be back together is growing each day, so we’ll just keep focused on that sunny tomorrow until we’re out of here.

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!