For 12-year-old Gus Smith, soccer is life.
Playing all summer and into the winter, Gus surrounds himself with the sport. He has jerseys and photos and tournament towels adorned with pins from around the world—and he’s already picked up season tickets for 2017 when the Minnesota United join Major League Soccer.
On May 5, Gus was diagnosed with stage IV Hodgkin lymphoma. His doctors at University of Minnesota Masonic Children’s Hospital started him on a 12-week course of chemotherapy almost immediately.
A cancer diagnosis is devastating for any family, but for Gus it also meant something else: No more soccer.
“That was the big, heartbreaking part of this,” said mom Jackie Smith. “Last summer he played soccer six hours every day. We knew this summer probably wouldn’t look like that.”
Gus’s cancer hasn’t stopped him—in fact it’s barely slowed him down. He has continued to play soccer, encouraged by his healthcare team.
That’s because the nurse practitioners at University of Minnesota Masonic Children’s Hospital have received training to implement an individualized exercise program for pediatric cancer patients. The study will assess whether this coaching increases physical activity levels and subsequently has a positive effect on fatigue and mood.
And so far, it seems to be working.
“Anecdotally, we’ve seen less fatigue in our patients. Many patients tend to lose endurance and strength during therapy, but this program aims to preserve greater physical function. We’ve also seen an overall enhancement in mood,” said Pediatric Nurse Practitioner Lexi Maciej, MS, RN, CNP. “I haven’t seen any negative effects from kids trying to be more physically active.”
For Gus, that means he is able to be a “normal kid” again. This summer, he played with his regular soccer club, Joy of the People, an organization that prioritizes personal growth over glory. Gus even scored a goal in a tournament this summer in sweltering 100-degree heat.
“It isn’t just the physical activity,” Jackie said. “For Gus, soccer means being with your friends, playing again and having the support of your team.”
Not all pediatric cancer patients are able to retain high levels of activity. Often, patients are limited by their specific illness or treatment regimen. If patients have a bone cancer in their arm or leg, for example, they might be limited in how they can move. A brain tumor can affect stability and balance. And for patients like Gus whose treatment can result in lowered blood counts, there’s an increased risk of bleeding.
“We try to direct patients toward activities that are safe and appropriate for their treatment plan,” Maciej said. “For some people it’s yoga, for other kids it’s going to the park and playing on the playground for 30 minutes. For those who have been sedentary, it may mean making a goal to walk around the block three times a week.”
Because Gus is enrolled in a medical study examining the effects of exercise on patients, he also uses a FitBit Flex Tracker to measure how active he is. Study coordinators then use the data to measure the patient’s progress. University of Minnesota School of Nursing Assistant Professor Casey Hooke, PhD, APRN, has partnered with clinical staff at the hospital to help coordinate the study.
Maciej hopes that one day all of her pediatric patients will be able to use trackers, but said the study is necessary to first understand whether using them is a worthwhile and effective approach.
Although Gus wasn’t able to play on his school team this fall because of treatment, he recently finished up his second round of chemotherapy and is now looking forward to a winter season of futsal—a modified indoor soccer game played with a smaller, denser soccer ball.
While his energy might be limited at times on the field, Gus said he just remembers the key advice his nurse practitioners gave him at the hospital: Be yourself.