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.
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
THANK Y’ALL FOR ALL OF YOUR LOVE & SUPPORT!
We truly couldn’t get through it without your kindness, prayers and encouragement.
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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