THE GOOD NEWS:
She has been fever free for almost 18 hours now.
THE BAD NEWS:
We’re seeing the neurotoxicity setting in now.
It’s been explained to us this way:
The fever presented as the newly reprogrammed T-cells went in and attacked the cancer cells.
The neurotoxicity is because the T-cells are now exploring the body (and brain) looking for other cells to attack. Doing the job they’ve been programmed to do.
For Avery, this means she is drowsy, sensitive to loud sounds and bright lights, and just feeling crummy overall.
They paused her morphine for a while to see if it helped her not be so groggy, but it didn’t make much of a difference.
With the possibility of headaches, as well as the fever coming back, they’re still doing scheduled Tylenol and morphine pushes, as needed.
Her CAR T doctor said everything they’re seeing right now is within the realms of what is “normal.”
We should expect her to sleep it off for a couple more days.
They’ll watch for any signs showing progression and the need for another dose of Toci, or, as a last resort, steroids.
Again, it’s fully expected, but no fun to watch her go through.
The flip side is this: we know the therapy is working.
Now we’re just continuing to pray the neurotoxicity resolves soon without any further adverse effects.
There’s no timeline. Nothing we can do for now but wait and see.
Follow Avery’s journey with Leukemia here
How can you help from home?
First, prayer. We need to continue to storm the gates of heaven for Avery.
Their biggest tangible needs are food and money. Even with insurance, the costs are undoubtedly going to continue to add up.
For starters, we set up a GoFundMe with a tentative amount that will most likely go up as we continue: https://www.gofundme.com/f/help-baby-avery-beat-leukemia
To help them stay fed while at the hospital, we’ve found DoorDash gift cards are best: https://doordash.launchgiftcards.com/
Email for digital gift cards here: [email protected]
Want to send cash straight to Chey through Cashapp? $CheyenneShipwash
Or you can send it straight to Nic through Venmo: @NKiernan
Want to send tangible gifts? We’ve set up an Amazon Wish List.
Purchase a shirt here: Happily Ever Avery products
Facebook page for updates: Happily Ever Avery
Instagram handle: @ourhappilyeveravery
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