Surviving childhood cancer is a family affair

As kids increasingly survive childhood cancer, families often need help adjusting in many aspects of life during and after cancer.

Childhood cancer survival rates have dramatically improved in the past 40 years. Fortunately, now almost 85% of children survive to adulthood, many with very positive outcomes. Childhood cancer treatment has evolved to focus on treatment of the whole child, including their physical, social and emotional needs. At Norton Children’s Cancer Institute, affiliated with the UofL School of Medicine, Sunnye Mayes, Ph.D., ABPP, is leading the charge with the program’s new Hematology/Oncology Physical, Emotional, and Social (HOPES) Program.

Dr. Mayes comes to Norton Children’s Cancer Institute from the University of Oklahoma Health Sciences Center in Oklahoma City, where she was an associate professor of pediatrics. Dr. Mayes has received specialized training in psychological services for children and adolescents with childhood cancer and blood disorders. She is the only provider in Kentucky or Southern Indiana who is board certified by the American Board of Professional Psychology in clinical child and adolescent psychology.

HOPES Program brings hope to families experiencing childhood cancer and blood disorders

Cancer is scary enough for a kid. Add to that treatments that can include surgery, chemotherapy, radiation treatment, stem cell transplants and CAR-T cell therapy, and it becomes a lot for a child and family to handle. The HOPES Program takes care of childhood hematology/oncology patients physically, emotionally and socially. The services include child life therapy, art therapy, music therapy and psychosocial services.

“With cancer and blood disorders, there can be a lot of additional stress, and even families that have really good coping mechanisms may struggle going through this process,” Dr. Mayes said.

As the director of psychosocial services for pediatric hematology/oncology, she oversees the new program, working with children and families from diagnosis, throughout treatment, and beyond.

“We’re there for the family. We work with the patient, the parents and sometimes the siblings. The whole family is in this situation together, each family member with different perspectives, and it’s our job to work with them and help them get through the process successfully,” Dr. Mayes said.

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Using research to help children and families have the best outcomes

According to Dr. Mayes, it’s important to work with families in an evidence-based manner, whether it’s specific interventions for sleep or pain, or other issues faced by a child or their family.

“I really like the process of taking what we know from the relevant research and applying that to the child’s needs, the family’s needs,” she said. “One of the things I like about my job is how resilient children are, and helping to bring out that resilience.”

Dr. Mayes works closely with parents to determine how well children, teens, and young adults are coping.

“If they see their child doing something they don’t normally do, or if they show a lack of interest in things they normally enjoy, that might be a sign they’re not doing well,” Dr. Mayes said.

“Sometimes, it’s tricky to figure out. What looks like depression may just be a sick kid. I’m here to help families figure that out and to help them feel more supported in that process.”

Dr. Mayes is also participating in a state-funded project initiated to implement the Psychosocial Standards of Care for Pediatric Oncology within Norton Children’s Cancer Institute. The Psychosocial Standards of Care is an outline for enhanced services needed for families of children and teens receiving treatment for cancer, both during and beyond their treatment.

“We’re intervening early with issues as they happen to help prevent them from continuing to expand as a child gets older,” she said.