Please keep her in your prayers as we work to stop the medicines, control the bleed, and focus on getting her well enough to go home!
Avery’s care team is working on stopping an active bleed; still from her nose. We just need the bleeding to stop.
Low platelets count are most likely the reason for all the blood. She had a sore on her nose that started bleeding again and wouldn’t stop.
We haven’t seen her ANC over 1000 since May! We also haven’t seen her this grumpy since her CRS + neurotoxicity stage after CAR-T.
“We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty.” — Maya Angelou
That’s three consecutive days of ANC above 500, so… SHE’S OFFICIALLY ENGRAFTED! This marks the start of her recovery process!
We’re hoping that by getting the fluids off her body, it will help alleviate many of the other issues. Now we watch and wait.
A lot of things have happened/changed overnight, including news that her liver was enlarged and contained lots of fluid.
I’m truly having difficulty coming up with the right words today. Last night at the hospital was rough. Her poor little face is so beat up.