Fever is Gone, Neurotoxicity Setting in Now


Thanks to the TociAvery’s fever broke!

She has been fever free for almost 18 hours now.


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.

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