High-risk individuals and their families have spent the COVID-19 pandemic watching the rest of the world take a socially distanced walk in their shoes.
Mask mandates, temperature checks and stay-at-home orders have been their everyday for quite some time, not just the last six months.
“The families understand this way of living because they live it all the time,” said UF Health pediatric hematology and oncology’s Dr. Bill Slayton. “The idea that their child could be exposed to something out there that’s fatal, that’s something that they understand because they’re really living it with their kids.”
Cancer patients are among those at a high risk for developing serious illness from the virus, according to the Centers for Disease Control and Prevention. Pediatric patients are no exception.
Chemotherapy and radiation treatment break down the body’s immune system, which inhibit its ability to fight off infection. Under normal circumstances, cancer patients keep safe from a common cold. Amid a pandemic, where medical knowledge of the infectious virus is limited, it’s especially important.
About one in 285 kids are diagnosed with cancer before their 20th birthday, according to the American Childhood Cancer Organization. More than two in 100 people are diagnosed with COVID-19, according to the CDC’s most recent seven-day average rate.
“It would be best if we, as a country, could really tamp this down to the point where it wasn’t so prevalent in the population,” Slayton said. “Because right now it’s not really under control. We’ve not really crushed the curve here.”
To limit the spread of COVID-19, UF Health hospital staff wear protective gear and socially distance whenever possible, Slayton said. All conferences and almost all meetings are held via Zoom to safeguard against a staff-wide outbreak.
“We have very specialized nurses who have expertise in giving chemotherapy,” Slayton said. “An outbreak of COVID among our staff could have a big impact on our ability to safely care for our patients.”
With extra precautions taken by faculty comes limited visitation and no in-person volunteering. In pediatrics, these are especially difficult circumstances.
Payton Gaskins, a 17-year-old from Valdosta, Georgia, was diagnosed with Stage IV, high-risk sarcoma in March, 2019. He and his family drove to UF Health in Gainesville for his treatment.
Payton endured 70 weeks of chemotherapy and eight weeks of radiation. These treatments lasted sixteen and two weeks longer than he and his doctors planned on, respectively. Delays from low white blood cell counts and hospitalizing radiation burns prolonged the process.
That was a year ago. Payton has finished all of his frontline treatment and is in the maintenance phase of his treatment now. This six-month-long process has him in Gainesville three Mondays per month for treatment and taking oral chemotherapy pills at home.
Since the COVID-19 pandemic started, patients have been limited to one family member per visit. The Gaskins have been forced to adjust.
All in-person volunteering has been canceled through the end of the Fall. Student-run organizations like Footprints that usually volunteer in the pediatric hematology and oncology unit at UF Health are unable to do so in person for the foreseeable future.
We really work to collaborate with the community in order to build the best future for pediatric patients and to ultimately let kids just be kids,” said Footprints president Hannah Diasti, The volunteering limitations have been hard on her and Footprints.
“We are definitely missing being with the kids,” said Diasti, a 21-year-old UF biology and women’s studies senior.
Footprints and The Dream Team — another student-run UF volunteering organization — collaborated to launch the remote volunteering opportunity called Childlife TV, Diasti said.
It’s a YouTube channel made available to all pediatric units at UF Health. The videos are made by organization members featuring games, storybook readings, holiday and diversity inclusion events, musical sing-alongs and arts and crafts. Footprints and The Dream Team are able to send “craft kits” to patients, which coincide with the arts and crafts tutorials posted on the channel.
“We look forward to being back to a day where volunteers can come because they brighten up the lives of our kids and our kids brighten up the lives of the volunteers,” Slayton said.
Luckily for children and their families, Child Life specialists still monitor the unit. These specialists are trained in child behavior and development, Slayton said. They use “play therapy” to explain procedures to children and help them deal with the medical tasks at hand.
However, volunteers typically shoulder this responsibility. In distracting patients by playing with them or singing them a song, volunteers allow Child Life specialists to have those long, difficult conversations about treatment with parents and families.
“I think when they have an army of volunteers, they can provide service to a lot of different families at the same time,” Slayton said. “It expands their reach.”