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 will be turning 11 on the day after she starts radiation, has been battling these tumors since they were found when she was 3. She has gone through round after round of Chemo therapy to no avail. The tumor on her optic nerve has taken her vision (while she can still see, she is considered legally blind) and the tumor on her hypothalamus has 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 has been an ongoing issue for her and she has since taken many more life flights and emergency trips from Billings to Denver. She has spent holidays, birthdays, and many other occasions that every little girl should be able to enjoy, in the hospital. Thankfully, the spirt this girl has is amazing. She lets nothing get her down and is always more worried about others than she ever is herself. She makes friends with every person that crosses her path and never misses an opportunity to throw out a compliment or crack a joke that has the whole room laughing. She truly is one of a kind!
This past March, 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, last week a 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 has always been the last option and we have now come to that point. She will start Radiation on August 20th and continue it for 6 weeks, all while staying in Denver. We are hoping and praying that this is the answer.
As you can imagine, the hospital bills add up very quickly and the vacation time disappears just as fast when you are making so many emergency trips to Denver and spending so much time in the hospital trying to get your daughter healthy. Adding to that, the fact that this has been going on for years and eating away at all their savings just makes it that much harder. We wanted to set this up with hopes that it could give Mark a bit more time to spend in Denver without having to worry about getting back to work and getting bills paid. His focus right now should be on Peytyn and we want to help him with that in any way we can.
This got much longer than I expected so thank you so much for taking the time to read it. We so appreciate the thoughts and prayers coming from friends, family, and people that have never even met Peytyn. The army that they have behind them has been truly amazing to see ❤️
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 ;)
This is a link to a story her local news station did on her a few years ago.
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