Minnesota Nursing magazine

Sam Mayland

Kids being kids during chemotherapy

Research discovers what helps children thrive after cancer treatment
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Barb Schlaefer

When parents first learn their child has cancer, shock and fear can overwhelm them, says Associate Professor Casey Hooke, PhD, APRN, PCNS-BC, CPON, who has worked as an advanced practice oncology nurse for more than 30 years.

“The focus is on survival, naturally,” said Hooke. “Parents only want to protect their child.”

With the vast majority of young cancer patients now surviving the disease, Hooke says more research is needed to understand what helps these children thrive developmentally, emotionally and cognitively during and after cancer treatment.

“I want to discover and share evidence on how to give kids with cancer the energy to be kids, whether it’s playing outside or being social or going to school,” she said.

This has been Hooke’s passion since completing her PhD dissertation on fatigue in childhood cancer patients in 2007. Her earliest research pointed to the importance of children remaining physically active during treatment, which she demonstrated helped to reduce fatigue.

One of the early discoveries was that it was often the most active families who volunteered for her studies about physical activity. In contrast, in her current study she works directly with advanced practice nurses to remove this self-selection bias.

When and how to coach families

Her most recent pilot study delivered education and resources to pediatric oncology nurse practitioners to help them effectively coach patients and families on physical activity. The study, which was funded by the Alex's Lemonade Stand Foundation, included a class for pediatric nurse practitioners and tracked when physical activity was discussed at their patient appointments. Nurse practitioners coached patients as part of their usual care. Patients then took part in a study that measured physical activity and fatigue levels and used activity monitors to determine whether their activity levels decreased, increased or stayed the same.

“Sammy loves to ride his bike, swim, play games and run around with his brother. We are working with his nurse practitioner to make sure he does not miss important events, like the first week of kindergarten.” – Amanda Mayland, Sam’s mother

“Casey’s class was excellent,” said Alexis Maciej, MS, APRN, CNP, a nurse practitioner who cares for patients at the Masonic Children’s Hospital’s oncology clinic in Minneapolis. “It provided a framework for assessing activity level in patients and implementing an individualized plan. I felt very energized about integrating this into the care for all my pediatric oncology patients.”

Amanda Mayland’s son Sam was diagnosed with leukemia in April 2017. She says that the initial shock of the diagnosis gave her a sense of helplessness. “But knowing we can encourage him to be active through his treatment is a good feeling,” she said. “Sammy loves to ride his bike, swim, play games and run around with his brother. We are working with his nurse practitioner to make sure he does not miss important events, like the first week of kindergarten.”

Maciej and Hooke
Alexis Maciej, MS, APRN, CNP, left, discusses a treatment plan with Casey Hooke, PhD, APRN, PCNS-BC, CPON.

Hooke is not prescribing exercise programs for kids. Rather, she believes the evidence indicates that kids do better simply being kids. “I’m not encouraging a regimen of workouts on treadmills or stationary bikes,” she said. “The work of staying engaged in the activities of childhood, to the extent kids feel well enough, is what is important.”

Taking it national

Hooke is also a co-investigator for a multi-site national study of children with leukemia that is exploring relationships between the chemotherapy side effects experienced during the first nine months of treatment and patients’ biologic markers and genetic characteristics. The goal of this National Institutes of Health-funded study, led by Marilyn Hockenberry, PhD, RN, PNP, FAAN, at Duke University, and Michael Scheurer, PhD, MPH, at Baylor College of Medicine, is to understand whether some children have certain biological characteristics that put them at a higher risk for symptoms such as fatigue, sleep disruptions or cognitive changes during chemotherapy treatment.

“I want to discover and share evidence on how to give kids with cancer the energy to be kids, whether it’s playing outside or being social or going to school.” – Associate Professor Casey Hooke

Hooke is leading a companion study, following 50 of the original participants, as they finish their treatment for leukemia. By tracking children after their second and third years of maintenance chemotherapy, she and her team will be able to determine the longer-range effects of physical activity in reducing symptoms. Using an NIH software application, the team is assessing children’s cognitive skills using iPads as they complete their leukemia treatment.

“If your child is sick with the flu for two or three days, you might put them on the couch with the remote control to watch their favorite shows,” Hooke said. “But kids with cancer are going through treatment for up to three years during a very important time in their development. We need to understand how to ensure they have the energy to meet important developmental milestones during that time.”

At the end of her companion study, Hooke and her team will determine whether symptoms of fatigue, sleep disturbance and cognitive function at the beginning of chemotherapy predict the level of these symptoms at the end of maintenance chemotherapy. This study is funded through the School of Nursing Foundation with a gift from the Arthur W. Olofson Trust and Neil Lapidus.

Today, the survival rate for all types of childhood cancers combined is 83 percent. Hooke credits the advances in survival rates largely to the work of a national consortium for pediatric cancer research called the Children’s Oncology Group, which coordinates large clinical trials nationwide. “I love this particular field because the evidence is always growing and changing,” she said. “It’s a joy to be part of it.”

Mayland brothers

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Sam Mayland
Sam Mayland, 5, was diagnosed with leukemia this spring.