Families who lost loved ones plan Jacksonville Beach walk for brain cancer research

Fred Fenton II and Dianne Fenton Waters were married 16 years, three months and 24 days.

“We knew from the first time we met we were meant to be,” Dianne Waters said.

But the last year of their marriage was full of pain and frustration, doctor’s appointments and hospitalizations, ending in November 2016 when Fred Fenton lost his battle with brain cancer.

“The entire year he was sick, I felt so helpless. Nothing I could do would help or save him,” said Waters, who has since remarried. “I do not like that feeling at all.”

She founded the Waves of Gray-5K Brain Cancer/Tumor Awareness Walk to bring together people in Jacksonville who are fighting brain cancer, to increase public awareness of the disease and raise funds for brain cancer and tumor research. The 2022 walk will be May 14 — during Brain Cancer Awareness Month — in Jacksonville Beach.

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“This disease cannot keep taking the lives of our loved ones,” Waters said. “This is my way of giving back while still fighting 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 started having severe headaches.

He had a history of mild headaches, likely because of earlier back surgery that cut short his work as a bio-med tech at UF Health Jacksonville. But this was different, Waters said.

“Everything started going downhill,” she said. “He started to have worsening headaches as well as episodes of confusion and disorientation. He was having trouble staying awake and had bouts of nausea. This started to get worse with each episode.”

In December 2015 an MRI found a large mass on Fenton’s brain. A portion of the tumor was removed, which led to a diagnosis of glioblastoma, an aggressive, usually lethal cancer that can occur in the brain or spinal cord.

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He was 49.

“At this point he was almost completely unaware of what was going on with and around him,” Waters said. “My husband was in for a year of hell to try and beat what he called ‘the purple monster.'” She has no idea why he called it that.

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After a monthlong hospitalization, he was discharged and underwent several weeks of radiation and chemotherapy. Many family members helped out so Waters could maintain her office administrator job that provided health insurance.

“We had to now figure out what our ‘new normal’ would be,” she said. “Much of that year I felt like I was living outside my body and watching my world be just completely destroyed. The entire year was heart-wrenching.”

Fenton was unable to do anything on his own. His wife was fighting 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 with something positive to ‘help’ in any way I could,” she said.

In May 2017 she and family members took part in a Brain Cancer Awareness Walk in Gulfport, Miss. She raised a few thousand dollars through sponsor support and on the way home decided to start a Jacksonville event.

Her sister-in-law, Andrea Bonacci of Middleburg, was also on that trip.

“When we got home, Dianne literally sprang into action,” she said.

Patients diagnosed with glioblastoma, Bonacci said, have “very little chance, very little hope. This needs to change.”

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“The entire family … fought right there with him,” she said. “I watched his wife, our parents, my sister go through this horrific cancer. We had no hope to save him. Everyone deserves at least that.”

The inaugural 5K in 2018 had 412 participants and raised about $36,000, and the 2019 event had 615 participants and raised about $73,000. Because of the COVID-19 pandemic, a live event was not planned in 2020, but supporters still collected $23,000.

In 2021, 416 people took part and raised about $61,000.

Proceeds go to the Waves of Gray Neuro-Oncology Endowment at Baptist/MD Anderson Cancer Center in Jack
sonville, where Fenton was treated. The endowment was created specifically for research.

‘Quality of life’ diminished almost immediately

Rebecca Rhodes Kozlosky of Fleming Island has been part of Waves of Gray since the first event as a participant and now as a planning committee member. She had gone through the same losing battle as Waters.

Eight years ago she became a widow with a small child when her first husband, Dustin Rhodes, 29, died of brain cancer. He was a marathon runner — “the healthiest person you’d 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 began experiencing headaches, nausea and numbness in his left side. Doctors discovered four masses in his brain and he received the same diagnosis given to Fenton. Rhodes was told he had six to 12 months to live even with surgery, chemotherapy and radiation.

He was gone in eight months.

“We were completely blindsided,” Kozlosky said. “All cancers are horrible, but brain cancer is one of the worst. There is virtually no screening that can be done to try to catch it early. Brain cancer affects men and women, infants and children of all ages regardless of health status, race or gender.

“It’s incredibly scary and unpredictable and often diminishes 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 dear to my heart,” she said. “It’s a way for us to keep his memory alive, honor him and support others who are affected by brain cancer. Watching my husband’s agonizing battle with brain cancer and losing him to this horrible disease changed my life forever.

So she said she is determined to assist in any way she can in spreading the word about the disease.

Caregivers endure too

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, even though the first took place 30 days after his tumor was removed.

“It was a challenge that I wanted to take on … to see if I could do it and push me toward my love for running,” he said. Also, he wanted to advocate for himself and everyone else impacted by brain disease.

“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 impact people in similar ways.”

Waves of Gray also boosts awareness of what caregivers endure, his mother, Melissa Cake, said.

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“What caregivers need during this time is support and help navigating through uncharted territory,” she said. “More awareness would bring more people together that may be going through similar circumstances.”

Kozlosky and Waters have also become advocates for caregivers.

“It was all-out exhausting and an often very lonely and isolating position to be in,” Kozlosky said. “Any support caregivers can get from family, friends, the hospital systems, etc. during treatment for brain cancer is crucial. I assure you they are burnt out and often feeling helpless and hopeless.”

Waters agreed.

“Caregivers need lots of help and support,” she said. “The complete devastation a brain cancer diagnosis … brings to one’s life is unbearable. You never really recover from watching your loved one becom
e a shell of nothingness. Supporting the cause in any way possible helps us take steps to come up with better treatment options, better outlooks for recovery possibilities and hopefully one day a cure.”

[email protected], (904) 359-4101

WAVES OF GRAY-5K BRAIN CANCER/TUMOR AWARENESS WALK

The walk is 8 a.m. to noon May 14 at the Jacksonville Beach Pier, 503 First St N. The fee is $30; online registration ends noon May 12. Day-of registration is $35. Ages 2 and younger are free. The walk will take place on the beach rain or shine. To register, donate, volunteer or get more information, go to runsignup.com/Race/FL/JacksonvilleBeach/WavesOfGray5K.

This article originally appeared on Florida Times-Union: Jacksonville Beach walk to raise money for brain cancer research