Thursday, October 22nd
Avery was more restless last night than she has been. She got up 3 or 4 times throughout the night. We capped her feeds at 30mL/hr as they are still causing some minor cramping. We switched from the time and a half feed formulation to her normal feeds until we can get her comfortably at her goal rate.
She didn't require any transfusions today. Her platelets were in the 60s. Her ANC was 1080. We will continue with the daily Neupogen for at least a few more days to get her ANC up higher.
We met with Dr. Friedman to review her MRI images. There was significant reduction in multiple areas of her brain and spine. He said that this was a best case scenario situation, and they were surprised at how well her disease had responded to the chemo. We will begin 6 weeks of radiation next week. She will receive Vincristine(chemo) weekly throughout her radiation unless it causes too many unmanageable side effects. If her counts drop into the neutropenic zone, we will give intermittent doses of Neupogen to bring them back up. After radiation, she will receive her final stem cell boost to help with recovery. She will get a 3-4 week break and then have another MRI. After the MRI she will begin a maintenance chemo regimen for an undetermined amount of time(possibly a year or longer).
Although our hopes and prayers will always be focused towards a permanent cure, the odds are not stacked in our favor. We hope that the radiation, if not completely curative, will give us 6-12 months(possibly longer) before we are faced with another relapse. We discussed the importance of finding balance... giving Avery the best quality of life while keeping her protected(flu, COVID, germs, etc) now that we are done with all of the hard-hitting chemos. We were reminded once again that we are being taken care of in the best place and by the best team that we could have ever hoped for.
After Avery's afternoon nap, she asked me what her ANC was. Since it we over a thousand, she made a plea for us to leave the floor and walk down to Children's Harbor. She won a toy at the claw machine and beat me in air hockey. Then she participated in the "Glow" party that was broadcast on the TV complete with glow in the dark slime, glow sticks, and flashing glasses and wands. She's currently building Legos before we settle in for the night.
Please continue to pray for:
- Continued count recovery
- Tolerance of feeds and sodium
- Avery's anxiety during radiation
- Complete healing
I am happy to see that sweet smile! She enjoyed the outing with Mommy, and I love that little toy she won. I pray for all you asked for, and for many, many, continued days for to have "good days!" This has to be so scary for you all; but remember, God is in charge and only he knows tomorrow because He is already there.
Prayers for Avery to be anxiety free during radiation, that she will be able to tolerate the feeds and sodium required, continued count recovery, and complete healing for Sweet Avery. We pray this prayer and all others in Jesus name, Amen!!!!!
Praying for continued count recovery and complete healing!