12/14/2021 0 Comments April 30, 2019Hope this update finds you well. Josephine has done well with two procedures she had; the first one was a conversion of g-tube to a j-tube. The first feeding tube wasn’t reaching the intestines and her stomach absorption was poor due to the inactivity. She is doing well with the feedings now.
The second procedure was done today. A tracheotomy was done to replace the breathing tube. She was intubated for almost six weeks. She was fighting infections and the doctors didn’t want to do these procedures last week. The first few weeks the doctors didn’t want to do anything but treat the seizures. Unfortunately the seizures didn’t go away but she is stable. Josephine will be transferred to the Children’s specialized hospital in New Jersey. She was there last year after the biopsy for acute rehab and she liked the place. Circumstances have changed since last year but the hospital is willing to help in every way, allowing ONC201 to be administered, and providing transportation for seizures treatments and/or second opinions. Josephine did some of her drawings at the Children's Specialized Hospital where she seemed to have gained faith and strength. She always remembered this place with warmth and gratitude. I am hoping they will help us find relief for those seizures and improve her quality of life. She is strong and has surprised the doctors here. She is fighting a monster in a very unfair battle but this is what we want. We want to fight back. She is only thirteen and death is not welcomed. Thank you for your continued support and prayers. We really appreciate your company.
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