What a great weekend we had with Avery!
We’re so grateful we didn’t have to wait until today to get her REMISSION result! Last week took a lot out of us physically and emotionally.
But, we did get some good news today…
Remember how we mentioned some “concerning results“ last week?
Well, today we got back the second set of results, the far more accurate set, and it shows NO B-CELLS!
There appears to have been a data error (Avery’s CAR-T was very apologetic for the error even though he had no part in it) so this was such a relief to hear!
This means that the T-cells did exactly as they were trained to do and didn’t have to completely exhaust themselves to do it.
Now, this next part… they need to be sure about Avery’s MRD: minimal residual disease. I explain more in the graphics.
Basically, the MRD will tell us what sort of chance she has for relapse AFTER bone marrow transplant.
Our job before BMT will get her MRD as low as possible. She will undergo bridging chemo as well as pre-transplant conditioning chemo.
The hope is both help bring her MRD way down in order to give her a greater chance at NOT having a relapse down the road.
So, that’s where we are now. We have another appointment on Thursday with her Oncologist. Her entire care team will meet tomorrow and we should know more about our next steps soon.
REMINDER: Join the national registry at Be The Match by clicking this link https://join.bethematch.org/everAvery or simply text everavery to 61474
A FREE kit will be sent to you. Just mail it back ASAP.
Help us bring awareness by sharing with others.🗣
Finally, I know I keep asking, but if you’re not following Avery on IG you’re missing out! One of her latest Reels is about to hit 500K views! If you’re on IG look us up there: @ourhappilyeveravery
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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