Fred Fenton II and Dianne Fenton Waters were married 16 years, 3 months and 24 days.
“We knew from the first time we met that we were meant to be,” said Dianne Waters.
But the final year of their marriage was filled with pain and frustration, doctor appointments and hospital stays, ending in November 2016 when Fred Fenton lost his battle with brain cancer.
“The whole year he was sick I felt so helpless. Nothing I could do would help him or save him,” said Waters, who has since remarried. “I don’t like that feeling at all.”
She founded the Waves of Grey-5K Brain Cancer/Tumor Awareness Walk to bring together people in Jacksonville battling brain cancer to raise public awareness of the disease and raise funds for brain cancer and tumor research. The 2022 walk will take place on May 14 – during Brain Cancer Awareness Month – in Jacksonville Beach.
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“This disease cannot continue to take the lives of our loved ones,” Waters said. “It’s my way of giving back while still battling this disease.”
“The Purple Monster”
The Fentons’ journey with brain cancer began in October 2015 when they were on a 10-day cruise to celebrate their 15th wedding anniversary. Fred Fenton got a bad headache.
He had a history of mild headaches, likely due to previous back surgery that interrupted his work as a biomedical engineer at UF Health Jacksonville. But that was different, Waters said.
“Everything started to go downhill,” she said. “He began to have progressively worse headaches, along with episodes of confusion and disorientation. He had trouble staying awake and had bouts of nausea. It got worse with every episode.”
In December 2015, an MRI found a large mass in Fenton’s brain. Part of the tumor was removed, leading to the diagnosis of glioblastoma, an aggressive, usually fatal, cancer that can occur in the brain or spinal cord.
He was 49.
“At that point he was almost totally unaware of what was going on with and around him,” Waters said. “My husband went to hell for a year trying to defeat what he called ‘the purple monster.'” She has no idea why he called it that.
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After a month’s hospital stay, he was discharged and underwent several weeks of radiation and chemotherapy. Many family members helped Waters keep her office clerk job, which provided health insurance.
“We now had to figure out what our ‘new normal’ would be,” she said. “For most of this year I felt like I was living out of my body and watching my world just get completely destroyed. The whole year has been heartbreaking.”
Fenton was unable to do anything on his own. His wife fought for him, but she said the more she learned about the disease, the more she felt she was in a “losing battle.”
Inspired to start something here
In 2016 and 2017, she looked for a local event to raise money for brain cancer research, but found nothing. She wanted “to be involved in something positive, to ‘help’ in any way she could,” she said.
In May 2017, she and family members participated in a Brain Cancer Awareness Walk in Gulfport, Mississippi. She raised a few thousand dollars through sponsorship and on the way home decided to start an event in Jacksonville.
Her sister-in-law Andrea Bonacci from Middleburg was also on this trip.
“When we got home, Dianne literally jumped into action,” she said.
Bonacci says patients who are diagnosed with glioblastoma have “very little chance, very little hope. That needs to change.”
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“The whole family … fought with him right there,” she said. “I watched his wife, our parents and my sister go through this terrible cancer. We had no hope of saving him. Everyone deserves at least that.”
The first 5K in 2018 had 412 participants and raised approximately $36,000, and the 2019 event had 615 participants and raised approximately $73,000. No live event was planned for 2020 due to the COVID-19 pandemic, but supporters still raised $23,000.
In 2021, 416 people participated and raised approximately $61,000.
Proceeds will go to the Waves of Gray Neuro-Oncology Endowment at the Baptist/MD Anderson Cancer Center in Jacksonville, where Fenton was treated. The foundation was created specifically for research.
The “quality of life” declined almost immediately
Fleming Island’s Rebecca Rhodes Kozlosky has been a part of Waves of Gray since the first event as an attendee and now as a member of the Planning Committee. She had gone through the same losing battle as Waters.
She was widowed eight years ago with a young child when her first husband, Dustin Rhodes, 29, died of brain cancer. He was a marathon runner — “the healthiest person you would ever meet,” she said, and just received a law degree from the University of Florida.
“He was in the prime of his life and we were just beginning our lives as a family of three,” she said.
But a week after Thanksgiving 2012, he developed a headache, nausea and numbness in his left side. Doctors found four masses in his brain and he received the same diagnosis as Fenton. Rhodes was told that even with surgery, chemotherapy and radiation, he had six to 12 months to live.
He was gone in eight months.
“We were completely blind,” said Kozlosky. “All cancers are terrible, but brain tumors are one of the worst. There are practically no screening tests that can be carried out. Brain tumors affect men and women, infants and children of all ages, regardless of health status and race or gender.
“It’s incredibly scary and unpredictable, and it often reduces your quality of life almost immediately,” she said.
She has since remarried and had two more children. The whole family participates in the 5K fundraiser.
“Supporting Waves of Gray is very important to me,” she said. “It’s a way for us to keep his memory alive, to honor him and to support others affected by brain cancer. Watching my husband’s agonizing battle with brain cancer and losing him to this terrible disease changed my life forever.
She said she was determined to help spread the disease in any way she could.
Caregivers also persevere
Logan Cake, 15, of Jacksonville, was diagnosed with a brain tumor in 2017. As a survivor, he has participated in each of the Waves of Gray Walks, although the first occurred 30 days after his tumor was removed.
“It was a challenge I wanted to take on … to see if I could do it and push myself to my love of running,” he said. He also wanted to stand up for himself and everyone else affected by brain diseases.
“It’s not as well known or talked about as breast cancer or other cancers in general,” he said. “It’s just as serious and can affect people in similar ways.”
Waves of Gray also raises awareness of what caregivers must endure, said his mother, Melissa Cake.
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“What caregivers need at this time is support and help navigating uncharted territory,” she said. “More awareness would bring together more people who may be going through similar circumstances.”
Kozlosky and Waters have also become advocates for caregivers.
“It was totally exhausting and an often very lonely and isolating position,” Kozlosky said. “Any support that caregivers can get from family, friends, hospital systems, etc. during brain tumor management is critical. I assure you they are burned out and often feel helpless and hopeless.”
Waters agreed.
“Carers need a lot of help and support,” she said. “The utter devastation that a brain tumor diagnosis … brings to someone’s life is unbearable. You never really recover from watching your loved one become a shell of nothing. Supporting the cause in any way you can helps us take steps to develop better treatment options. better prospects for recovery and hopefully a cure one day.”
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WAVES OF GRAY 5K BRAIN CANCER/TUMOR AWARENESS
The walk will take place on May 14 from 8:00 a.m. to 12:00 p.m. at the Jacksonville Beach Pier, 503 First St N. The fee is $30; Online registration ends at noon on May 12th. Registration day costs $35. Children up to 2 years are free. The walk takes place on the beach, rain or shine. To sign up, donate, volunteer, or for more information, go to runsignup.com/Race/FL/JacksonvilleBeach/WavesOfGray5K.