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Diffuse Intrinsic Pontine Glioma (DIPG)
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Kayne was a kind, compassionate, funny, witty and mature high school senior who loved animals, especially dogs. He was active in competitive swimming since he was about 5 years old. He played volleyball and ultimate Frisbee and loved to boogie board and surf. In his spare time, he volunteered with Habitat for Humanity, Special Olympics and Launch Federal Credit Union and enjoys video games on Xbox and Minecraft. He was outgoing and can talk to anyone of any age without hesitation or reserve. Kayne was a joy to be around with an easygoing nature.
Late October 2016, Kayne reported his left eye not fully closing when he was in the ocean. Additional symptoms also started such as being more tired than usual, missing shots when playing volleyball, mild hearing loss and inability to move the left side of his face. Thinking it was Bell's Palsy but wanting to be sure, the doctor ordered a full brain MRI and the Ear, Nose and Throat specialist informed his family that there was a mass lesion near his brain stem. The true weight of the diffuse intrinsic pontine glioma (DIPG) diagnosis came when they met with the pediatric neurosurgeon the following week and Kayne was hospitalized due to dehydration and vomiting. He was inpatient for four days to get him stabilized.
Once in the hospital, he met with the entire pediatric neuro-oncology and radiology oncology teams to develop a plan of action which included six weeks of targeted radiation immediately followed by a targeted therapy clinical trial. Kayne responded well to radiation with little nausea as time went on. Many of his symptoms were significantly reduced.
He also enrolled in the Ribociclib clinical trial led by ALSF Quality of Life and Care Grantee Mariko DeWire-Schottmiller at Cincinnati Children’s Hospital Medical Center.
Three months into treatment, Kayne established Cannonballs for Kayne, a DIPG research foundation, committed to families, education and funding research for a cure. Kayne established the foundation while a student in the Academy of Finance program at his high school.
Kayne’s dream was to become a doctor of veterinary medicine (DVM). He attended Louisiana State University as a freshman in fall 2017, majoring in the College of Agriculture, Animal Sciences. He was the assistant swimming manager for the university’s team. Kayne passed away in November 2017.
Before his death, Kayne signed a directive, ensuring that his tumor could be donated for scientific research. He also Kayne left behind this hope: that someday, a cure for DIPG would be found.
“I hope that with all the people that know my name and my diagnosis [DIPG brain cancer], I can be a beacon of inspiration worldwide. Please educate yourself and others about DIPG and help us fight for and develop a cure. Every single person makes a difference,” said Kayne.
Kayne’s mother, Kirsten, remembers Kayne as smart and outgoing, super friendly, a thinker and someone who truly enjoyed people.
It pained his family that Kayne had to battle brain cancer at such a young age; but they found inspiration in Kayne’s strength. In the first eight weeks after his diagnosis and through his entire battle, Kayne rallied and inspired hundreds of people, thousands in fact, across the globe to stay positive through the toughest challenges. Kayne looked to God for his future and knew that only He knows what Kayne's plan is. Kayne displayed humility, kindness and a genuine light that filled a room when he was in it. He didn’t ask for anything. He used to say: “Just PRAY. I don't have anything that I want because I can do that when I'm better. I just want to get better.”
Kayne said he was slightly ignorant about the DIPG diagnosis at first and chalks it up to being sick and in the hospital. Once he was stable, feeling better and the full reality of the situation set in, he began to truly open his eyes and find happiness in what he has each day. He wanted others, who may have recently received a cancer diagnosis, to know that your perception of life changes drastically and he believes there is purpose in all of it. Kayne said, “Stay positive and don't let the cancer win by beating you down. Find the good in each day and although things are going fast, at the same time each moment is to be cherished.”
Kayne’s family hopes that by participating in ALSF they can spread awareness about pediatric cancer and more importantly raise funds for proper, proven research on brain cancer and specifically DIPG cures for future children.
Hero Quote: “It's not about what you've done, it's about what you do and continue to do from here on out.” – Kayne Finley
Information provided by Kirsten Finley, Kayne’s mother
Updated July 2018
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