ST. GEORGE – “When you get the word cancer, it’s like being hit between the eyes with a two-by-four,” Brett Barrett said of the day his family learned his 15-year-old son, Fox Barrett, could have cancer.
The call from doctors came Feb. 6, reaching Brett Barrett at his office while he was talking to a co-worker.
There was hope the doctors examining X-ray and ultrasound images taken of Fox’s right leg would say he had a bad bone infection and not some potential form of cancer, but the latter news – the unwanted news – carried the day.
Sharing the news with family didn’t take long after Fox and his father had been to the clinic. His father, mother and sister all work in the same office building and it was quickly filled with cries of emotion. Life as the Barrett family knew it changed.
A trip to Intermountain Primary Children’s Hospital in Salt Lake City the following week would confirm the growth on Fox’s leg was a cancerous tumor.
In the months since the fateful call, the Barretts have learned to live day-to-day and plan around what Fox is and is not able to do in between trips to Salt Lake City for chemotherapy and testing. There is fear and uncertainty but Fox said his family has drawn closer.
“I’ve gained a greater appreciation for life,” Fox said. “I’ve gained a greater understanding for today.”
The diagnosis: fibrosarcoma
It may have been a December 2016 spider bite on Fox’s right calf that led, at least in part, to the discovery of the tumor. His leg had been painful, swollen and treated and life went on. Yet the swelling didn’t go down.
Fox left school due to renewed pain in his leg Feb. 1.
“It swelled more. It became dark and purple,” Fox said, “this really nasty-looking thing.”
A doctor checked out Fox’s leg and ordered the Feb. 3 X-ray and ultrasound. A short time later the clinic called Brett Barrett and told him to take Fox to the emergency room at Dixie Regional Medical Center in St. George because the growth appeared to be cancerous.
Fox was ultimately diagnosed with fibrosarcoma, a form of osteosarcoma, or bone cancer, in which a tumor develops in fibrous connective tissue and bone material.
Each year in the United States, about 400 children and teens younger than age 20 are diagnosed with fibrosarcoma, according to St. Jude’s Childrens’ Research Hospital. The disease strikes children, teens and adults, ages 10-30.
Osteosarcoma can occur on the long bones of the arms and legs, flat bones that protect vital organs and on the skull and pelvis.
In 15-20 percent of cases, by the time osteosarcoma is diagnosed, it has already spread to other bones or the lungs. Shortly after his own diagnosis, doctors at Primary Children’s Hospital found spots on Fox’s lungs they believe to be connected to the sarcoma.
According to the American Cancer Society, osteosarcomas make up an estimated 2 percent of childhood cancers, with a much smaller percentage for adult cancers.
Treatment for fibrosarcoma involves chemotherapy and surgery.
“Before the cancer I knew where I was going,” Fox said.
He was an active member of the Pine View Middle School Student Council. He has plans to run for city council and U.S. Senate when he is older. After that, Fox said, he may even try to run for the presidency.
However cancer doesn’t exactly make long-term plans – as feasible as those once seemed.
“It changes your outlook on life,” Brett Barrett said. “It becomes minute by minute, hour by hour. You’re not able to plan things like you used to. As a cancer family you live and die by the numbers from the lab results.”
Every Monday and Thursday Fox’s immunity levels are tested. When the numbers are good, he is able to be among large groups of people; go to school, attend church, simply be out in the community. When the numbers are bad, Fox stays home.
At times, the 15-year-old needs to wear a mask over his mouth and nose when he goes out. While it has drawn a few odd looks, it’s not something that bothers Fox.
“There are occasionally are glares when I go out without a hat and with a mask and me bald, because they’re curious,” he said, “and you can’t blame them for curiosity.”
Family, friends, finances and faith
Family. The Barrett family has drawn closer since his diagnosis, Fox said, and they, along with his friends and his faith, have been a great support.
“I wouldn’t be able to get through this if it was not for my family, friends and faith,” he said. “Those three things together are what help me get out of bed every day.”
Friends and finances. Fox said some of his friends didn’t know how to react to him once they heard of his cancer. Interactions were awkward at first.
“It took a little while, but now it’s something that I have, not something that defines me,” he said.
In matters of material support, one of Fox’s friends, a classmate, held a secret fundraiser for the Barrett family and donated $400.
Others have donated to a GoFundMe.com account while others do what they can here and there through providing food and other acts of service for the family.
“Little things matter,” Brett Barrett said “There is no amount of help that is too small. There is no generosity that is meaningless, trivial or unappreciated.”
In the case of the family’s means, Brett Barrett makes too much for his family to qualify for Medicaid and said medical insurance would also eat up 60-70 percent of his income. This has landed the Barretts in a Catch-22 situation that has left them relying on the support of others.
“We’re learning to be dependent upon the kindness of others because by ourselves there’s no way we can pay for this.”
Brett Barrett estimated Fox’s treatment will run around $250,000.
“That’s like buying another house,” he said.
Neither Brett Barrett nor his wife have a vehicle and rely on their daughter’s vehicle for transportation around the St. George area. For the 600-mile trips to and from Salt Lake City for Fox’s chemotherapy, the Barretts are currently able to borrow a car.
Faith. The Barretts are members of The Church of Jesus Christ of Latter-day Saints. They spoke freely of their faith and the prayers they feel have been uttered to Heaven on their behalf.
“(This) has given me greater faith, because it’s hard to live with the fear that you are going to die at 15,” Fox said. “It’s hard to face that fear, but it’s that faith I hold onto that gets me through the thick and thin.”
When one is faced with the prospect of imminent mortality, Brett Barrett said, questions of “Who am I?” “Why am I here?” and “Is there really a God?” become more relevant.
“We’ve had so many people tell us, ‘We’re praying for you,’” Brett said. “Until you are in a situation like this, you really can’t feel the tangibility of prayer. We’re feeling it in our lives. We can feel the difference not only that our faith makes but the faith of others.”
- Persons who wish to donate to Fox Barrett’s fight against fibrosarcoma can do so at his GoFundMe page here.
- Blog: Fox Barrett & his fight against Fibrosarcoma
Ed. note: Fox’s mother is an employee of St. George News.
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