I know many people follow Peytyn but I’m not sure we have ever written out her entire journey. I thought I would give the whole backstory here for anyone that doesn’t know. It’s been a long road but I will try to keep it short.
Peytyn was born with a genetic disorder called NF1. Some people have little to no symptoms while others have many. Peytyn’s was found when she was 3 after taking a tumble down some stairs. Worried about a concussion, her parents took her to the ER where a Cat-scan found a tumor growing on her optic nerve. Eventually there were others that developed, one being on her hypothalamus. She was initially sent to Salt Lake City where they started a treatment plan. Eventually, things were moved to Denver Children’s Hospital and she has since been followed by her team of doctors there.
Peytyn, who turn 11 on the day after she began radiation, had been battling these tumors since they were found when she was 3. She had gone through round after round of Chemo therapy to no avail. The tumor on her optic nerve had taken her vision (while she can still see, she is considered legally blind) and the tumor on her hypothalamus had caused several other complications.
The biggest set back came in 2016 when the tumor on her optic nerve started to bleed due to the new Chemo she had just started on. The bleed in her brain then caused her to have multiple strokes and a heart attack. Peytyn was life flighted that night to Denver. She was placed on a ventilator and sedated for several days. Things were very touch and go for a while. After weeks in the PICU, multiple surgeries to place drains & shunts to get rid of the fluid on her brain, and more weeks spent working hard to re learn things that were taken by the strokes, she was finally released to go home. She was home for only a month before being life flighted back to Denver because her shunt was not functioning properly. This had been an ongoing issue for her and she has since taken many more life flights and emergency trips from Billings to Denver. She had s spent holidays, birthdays, and many other occasions that every little girl should be able to enjoy, in the hospital. Thankfully, the spirt this girl had was amazing. She let anything get her down and always more worried about others than she ever is herself. She mademade friends with every person that crosses her path and never misse an opportunity to throw out a compliment or crack a joke that has the whole room laughing. She truly one of a kind!
This March 2018, Peytyn’s doctors decided that her body just could not take any more Chemo. She was very under weight, very sick, and had hundreds of ulcers in her stomach. The best plan of action was to let her take a break from Chemo and hope and pray that the tumor would have no change. After being off Chemo for 6 weeks, her first scan came back and there had been no change in size. It was a huge relief and the best news we had heard in a long time. Unfortunately, later after routine Cat-scan to check the tumor turned everything upside down again. Her shunt was no longer functioning because the tumor had started to aggressively grow again and was pushing on her shunt. The bad news continued when they were told there was a second tumor starting to grown very close to the optic nerve. Radiation ha always been the last option. She started Radiation on August 20, 2019 and continue it for 6 weeks, all while staying in Denver.
Sadly, in Feburary 2019 after many years of fighting Peytyn went home to be with Jesus. Her brain and tumor were donated for research. The American cancer society is dear to our hearts because research is what let Peytyn be with us as long as she was and will help another child live a full life.
You can follow Peytyn and her updates on her Facebook page
Here is some basic info about NF1 tumors in the brain. Of course in true Peytyn style, unlike “most” of the children they talk about here, she’s not average and has pushed the NF1 boundaries a bit ;)