The good news today?
Avery’s new Midnight Rainbow Romper and blanket from Kyte BABY came in, so Mom & Dad had a fun photo shoot with her this morning.
Bamboo clothing works well for her because it’s super light (for helping maintain a constant body temperature) and soft (on her already sensitive, chemo-infused skin).
Also, her ANC is over 300 today.
Plus, she’s had a really great day overall. PT went well, she’s been eating a lot, good naps, and just being her normal happy self.
I wish I could say the same for the rest of us.
Sometimes it’s truly a blessing that Avery doesn’t understand what’s happening.
The FISH results from last week’s biopsy show 15% ALL (Acute Lymphoblastic Leukemia) cells in her bone marrow. They need to be under 5% for CAR-T.
They can still not conclusively say if the Myeloids present are cancerous or not. If yes, that would be AML (Acute Myeloid Leukemia). A new, different line of cancer.
Either way, they’re still doing the biopsy again tomorrow to get a better look at both, but are also going to start another, much harder, round of chemo on Wednesday regardless.
This round is only 6 days, but doubles up on some of the toughest meds. The Doctor said she expects Avery to feel pretty bad throughout the process. Fevers and other side effects are expected.
Her ANC will then take around 40 days to come back.
This is the hardest part right now. Mom & Dad were so ready to come “home” (at least to RMDH) and be with BOTH girls.
They’re now looking at another 6 to 8 weeks or more in the hospital.
After the chemo, if it remains only ALL, they go to CAR-T.
If there’s any AML, they need her to go into remission and then they’ll go straight to bone marrow transplant.
We won’t know which direction until we find out the results of tomorrow’s biopsy.
Our biggest concern at this time is the possibility AML. It’s obviously easier to fight one cancer rather than two.
Big Sis goes in tomorrow to get tested to see if she is a bone marrow match.
They should know within a few days if she’s a match, otherwise they’ll go straight to the Be The Match registry to find a donor.
Therefore, here’s your reminder (especially those 18-44) to join the registry to be included in the search for a donor for Avery!
A FREE kit will be sent to you. Just mail it back ASAP.
You can easily click this link https://join.bethematch.org/everAvery or simply text everavery to 61474
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