Nathaniel “Kayne” Finley
Kayne was a kind, compassionate, funny, witty and mature high school senior that loved animals, especially dogs. He was an active swimmer since he was about 3-years-old and as he got older swam year-round for club and during high school seasons. 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 enjoyed video games on Xbox and Minecraft. He was outgoing and could talk to anyone of any age without hesitation or reserve. Kayne was a joy to be around with an easy-going nature. He put “family first” and was a good friend.
THE SHOCK OF DIPG
In October 2016, just after turning 17, while a senior at Spruce Creek High School in Port Orange, Florida, Kayne reported his left eye not fully closing when he was in the ocean. Additional symptoms began such as being more tired than usual, missing hits 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 he and our family that it was a mass lesion near the brainstem. The true weight of the diffuse intrinsic pontine glioma (DIPG) diagnosis came when they met with the pediatric neuro-surgeon the following week and Kayne was hospitalized due to dehydration and vomiting. He was inpatient at University of Florida Shands Children’s Hospital 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 6 weeks of targeted radiation during Christmas and New Year’s, immediately followed by a targeted protein inhibitor therapy clinical trial at Cincinnati Children’s Hospital Medical Center. The trial was a Phase I/II of the LEE study also called Ribociclib chemotherapy drug. Kayne had responded well to radiation with little nausea as time went on. Many of his symptoms had significantly reduced, although he did not regain his hearing on the left side nor did he regain his full taste buds back.
Just before high school graduation, Kayne was invited by Kentucky Governor Matt Bevin to be the featured speaker at the State Capitol for a special event declaring May as Brain Tumor Awareness Month and proclaiming May 17 as DIPG Awareness Day. In addition to this, he spoke at several area schools and businesses about DIPG to raise awareness. Kayne was an Ambassador for Alex’s Lemonade Stand for his 3rd grade alma mater, Erpenbeck Elementary and they won the 1st place national title for their work together.
After three months of traveling back and forth from Daytona Beach to Cincinnati, Kayne was dismissed from the clinical trial due to progression in the ventricles and frontal horns sections of his brain. This prompted another 6-week round of radiation at University of Cincinnati Health of which he successfully completed 5 weeks before learning the DIPG tumor at the brainstem had progressed. Kayne chose to stay in the Cincinnati area that summer for treatment, so he could go camping at the lake and hang out with his friends and family living there.He wished to be able to drive again and do all the things he was able to do before. He wanted to continue competing in swimming and playing sports as he graduated high school and prepared for college.
BEING A LSU TIGER
Experiencing, nausea and worsening symptoms, Kayne decided it was time to “just live” his life the way he wanted. Kayne’s aspiration in life was to become a Doctor of Veterinary Medicine (DVM). In August of 2017, he attendedthe Louisiana State University STRIPES leadership program before enrolling full-time as a freshman in the fall of 2017, majoring in the College of Agriculture, Animal Sciences.
While at LSU Kayne physically attended classes every day on a borrowed medical scooter, because he could no longer walk independently, and with his English Mastiff service dog, Dementor_the_Moose (Instagram) on Mondays, Wednesdays and Fridays. On Tuesdays and Thursdays, he scheduled his physical and speech therapy sessions and his compassion use chemotherapy to minimize symptoms of neuropathy, blurred vision and other effects resulting from the tumor growth. He was monitored and treated at Our Lady of the Lake Children’s Hospital, St. Jude - Baton Rouge Affiliate.
Kayne enjoyed attending LSU football games in Tiger Stadium, meeting Head Coach Ed Orgeron and many other famous players past and present, including Mike VII. Kayne was named LSU Assistant Swimming Manager and applied, interviewed and was accepted into the LSU Ambassador Program, receiving the sought after yellow polo shirt signifying completion of the training. We whole-heartedly believe he knew more about LSU than some of the Ambassadors teaching the training, though he never boasted about it.
During his last week at LSU before going home to Florida, Kayne was thrown a “See Ya Later” party and many of his LSU friends and local dignitaries came out to wish him well. He was inducted in the LSU Alumni Association and his final engagement before flying home was advocating for increased attention and funding for childhood cancers, especially orphaned diseases like DIPG with Louisiana Governor John Bel Edwards.
Kayne is our hero because he was smart and outgoing, super friendly, a thinker and enjoyed people. It pains our family that had to experience brain cancer treatments and a terminal diagnosis at such a young age when he had so much to offer the world. Kayne went to his heavenly home on November 24, 2017, just 360 days of knowingly living with DIPG.
THE CANNONBALLS MOVEMENT
In just 8 short weeks, he was rallying and inspiring hundreds of people, thousands in fact, across the globe to stay positive through the toughest challenges. Kayne looked to God and his faith for his future and knew that only The Lord knows the map of our lives. Kayne displayed humility, kindness and a genuine light that filled any room he was in. Early on when first diagnosed with DIPG, he did not ask for anything specific. He said in his first video-documentary with Chris Ulmer of Special Books by Special Kids, “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 admitted being slightly ignorant about the DIPG diagnosis at first and chalked 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 joy” and happiness in what he had each day. He pushed through each day with a positive attitude and left those who came in contact with him in awe!
He wanted others, who may receive a cancer diagnosis, to know that your perception of life changes drastically and he believed there is purpose in all of it. He found his purpose in building the Cannonballs for Kayne Foundation. 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 hoped he could spread awareness about pediatric cancer and more importantly raise funds for proper, proven research on brain cancer and specifically DIPG cures for future children. We believe by starting his own foundation, sharing his thoughts on paper and encouraging others to get involved, our family is able to honor his dreams and desires, leaving a lasting legacy that will MAKE WAVES for DIPG!
“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.
“It's not about what you've done, it's about what you do and continue to do from here on out.” – Kayne Finley