Happily Ever Avery // Chemo is Imminent But Uncertainty on the Type

“Embrace uncertainty. Some of the most beautiful chapters in our lives won’t have a title until much later.”

— Bob Goff

So… last time we updated we mentioned that Avery’s next clinic appointment was moved to Monday. And chemo would be starting on that day.

Yesterday, we saw up update in her MyChart telling us that appointment was changed.

When we talked to her Oncologist, we were able to get a bit more information about why the change was needed.

Here are the updates as we understand them:

  • Doctors are still waiting on the last NGS results (we need these to be negative for MRD)
  • She’ll have another bone marrow biopsy + lumbar puncture for updated results
  • Once we have all of the newest, most up-to-date results we’ll decide how to move forward

There are 2 scenarios currently on the table:

  1. If NGS comes back positive (or any of the new results come back positive), we’ll being the Bridging Chemo discussed in the 8/12 update
  2. If NGS comes back negative (and other results still show no cancer cells), we’ll go straight to Conditioning Chemo for Bone Marrow Transplant!

In summary, we won’t get all the test results back until the end of next week, and then we should be ready to get started on chemo the following week.

The BIG questions at the moment are (1) are there any new cancer cells in the 2 weeks since her last biopsy OR (2) is she MRD negative across all of the tests?

Either way we’re looking at starting chemo (either Bridging or Conditioning) the week of August 30th.

Keep praying for negative MRD across the board!

Oh, and one final note, our girl turned 10 MONTHS OLD yesterday!

Follow Avery’s journey with Leukemia here.

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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]il.com

Join the National Bone Marrow Registry at Be The Match if you would like to be included in the search! Just click this link https://join.bethematch.org/everAvery or simply text everavery to 61474

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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