Hoping for More of Her Rockstar Status

When Avery’s CAR-T doctor came in today to talk about what we can expect over the next few weeks/months, he mentioned that Avery has always been a rockstar with her treatments.

*paraphrasing here*

But, it’s pretty much the point… and we agreed.

Avery has continued to do well through her treatments and we fully expect/hope she does well with CAR-T.

Mom and Dad have to monitor her this week for any fever or other changes in her demeanor, appetite, etc.

She did gain almost 2 lbs since she left the hospital! She’s loving solid foods at home.

Oh, and speaking of food, a fun(?) side effect from her infusion today: she smells like cream corn!

They said it’s the preservatives used to keep her T-cells. And it’s not just a “walk up and smell her head” type of thing. It’s a walk into their home and smell it kind of thing!

Truly kind of crazy!

She’ll be back in clinic on Friday for lab work, and then twice a week through the end of the month.

Her bone marrow biopsy will (tentatively) be on 8/3 and we’re praying she’ll be in remission by that time.

So, again we wait.

And, as I mentioned this morning, there’s still a possibility of a bone marrow transplant.

To register to be a donor, click this link https://join.bethematch.org/everAvery or simply text everavery to 61474


We truly couldn’t get through it without your kindness, prayers and encouragement.

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