Eight years ago, Jennifer Arrington was planning her unborn son’s funeral and her own at the same time.
Diagnosed with a rare pediatric cancer while 16 weeks pregnant with her second boy at age 28, Arrington has endured 87 rounds of radiation, eight surgeries including a major neck surgery and nearly four straight years of chemotherapy treatment. As a young adult dealing with an aggressive cancer while most of her peers were in the prime of their lives, Arrington struggled to find resources appropriate for someone her age.
The isolation was compounded by the rarity of her cancer — rhabdomyosarcoma — which affects only about 400 people per year in the United States.
“In support groups, I would be the youngest one,” said Arrington, who lives in DeLand and was treated at UF Health in Gainesville. “People can’t even pronounce the type of cancer I have. I didn’t qualify for housing resources because of my age. I felt like I was on a hamster wheel, isolated from the world.”
Now, with a nearly half-million-dollar grant from the nonprofit Teen Cancer America, the UF Health Adolescent and Young Adult Cancer program — one of four in the state — will add three positions to expand clinical care and support services tailored to the age-specific needs of patients like Arrington.
“This funding is tremendously meaningful because it will help us fill the gap for patients who otherwise fall into a gray area without specialized care,” said Leighton Elliott, M.D., an assistant professor of medicine and pediatrics who became director of the program this summer. “The funding opens doors to worldwide collaborations that we may otherwise not experience.”
Each year, nearly 90,000 adolescent and young adult patients — those between 15 and 39 years old — are diagnosed with cancer. Although overall cancer survival rates are increasing among this age group, there is still a long way to go to understand why these patients get more aggressive cancers, such as breast and colon, and to address issues of health equity and quality of life, Elliott said. Gaps in research remain in part because these patients are sometimes grouped with older adults or children.
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