10/09/2026
Day +31 Update!
Addy woke up early this morning to finish her tests for the end of the 9 weeks of school. She was uncomfortable the entire time, but she pushed through and got it done. Once she finished, the doctors rounded with her CT results. The good news? Her lungs look great! Unfortunately, there is quite a bit of inflammation and thickening in both her bladder and stomach.
I chatted with the doctors for a bit before I stepped out of the room to discuss Addy’s LEAST favorite thing… FEEDS.
Because of her frequent loose stools, along with the inflammation, thickening, and pain she continues to experience in her stomach, we’ve decided to stop her feeds for a few days and see if things improve. This means she’ll be going back on TPN (IV nutrition), which will definitely push back her discharge.
If her stomach doesn’t improve after stopping the feeds, the next step will be a scope sometime next week to see if something else is going on. And if the feeds are the culprit, we don’t have a clear plan for that scenario just yet. The hope is that being off feeds all weekend, combined with being on the highest dose of Periactin to stimulate her appetite, this will encourage her to start eating again. If she does start eating but still needs feeds, hopefully, we can restart them at a much lower rate.
When I came back into the room, Addy told me her tummy pain was an 8/10 and asked for her morphine. She’s now resting comfortably and taking a much-needed nap.
Today’s Numbers:
WBC: 7,770 down to 4,030
Hemoglobin: 10.8 down to 10.4
Platelets: 24 down to 15
ANC: 6,160 down to 3,080
Seeing her ANC drop by half is super discouraging. We know these numbers can fluctuate, but every drop feels heavy. She’ll also receive a unit of platelets sometime today because she just can’t seem to hold on to them. On top of that, her magnesium stayed the same despite receiving an infusion yesterday, so we’re adding another magnesium infusion to today’s menu.
Today also marks SIX WEEKS of us being here. Six weeks of hospital rooms, tests, procedures, medications, lab results, waiting, hoping, and taking things one day at a time.
In those first few weeks, Addy and I were taking everything in stride. We found our rhythm, adjusted to our new normal, and kept putting one foot in front of the other. But now, I think the weight of everything is finally catching up with both of us. The uncertainty, the setbacks, the pain, and not knowing when we’ll get to go home are exhausting in ways that are hard to explain.
We’re still fighting. We’re still hoping. And we’re still taking it one day at a time. But today, I’m allowing myself to admit that this is HARD. Really hard.
Please keep praying for Addy’s tummy to settle down, for her to be able to eat again, for those platelets to stick around, and for her body to keep healing. We’re praying for some good news, a little relief, and a light at the end of this very long tunnel. 🩷🎗️