Status update from 10/14/2020
PLEASE HELP US AND SHARE THIS POST!!!
Peyton’s health insurance is denying her the treatment recomended by all of the top oncologist at St Judes. They are saying there haven’t been enough studies done on it specifically for ACC. I talked to the father of the 16yr old boy that had this treatment and he said his insurance wouldn’t cover it either. His son had ACC surgery, did EDP-M chemo and had a reoccurrence a year out of treatment. He ended up with 14 tumors in his lungs… This is almost exactly what Peyton has been through.
We reached out to the hospital where his son had this treatment, but there are no open studies for it at the moment. That is the only way we could possibly have the hospital cover the medication costs. The father of the boy told us the treatments cost around $75k each and she would need 3, most likely.
She is on Arizona Complete Health complete care plan. If anyone knows anyone that can help or has any ideas please let us know. Time is so important as the tumors she had in her brain grew from nothing to a substantial size in just a few weeks. We are a week out from her last MRI, and have no idea what’s grown since then. The tumors in her right lung, spine and hip bone haven’t been scanned in 4 weeks as well. If we do nothing things may progress very fast 💔