Advocating for student cancer survivors

At age 7, Sophie was treated for a brain tumor at Dana-Farber/Children’s Hospital Cancer Center. As a result of her treatment, she struggled with ongoing fatigue, weakness on her right side, and chronic headaches.

Sophie began her freshman year as one of 2,000 students at a large public high school. Despite support from special education teachers, she struggled with the academic demands of her classes and the overwhelming size of the school. An extremely dedicated student, she spent hours each evening on homework, but she tired easily, which made the headaches worse, and she struggled to get through each school day.

More children than ever are surviving cancer. But some will pay a price in long-term effects. Radiation and chemotherapy for cancers involving the central nervous system (including brain tumors and leukemia) can impair problem-solving, multi-tasking, attention, and memory, putting students at risk for learning difficulties.

Sophie and her family turned to Dana-Farber/Children’s Hospital Cancer Center’s School Liaison Program, designed to help children get the school-based services they need for academic success. It’s the only program of its kind in the region.

“Often these students go unnoticed or only come to our attention when they’re no longer making progress,” says Marybeth Morris, EdM, the School Liaison Program’s school psychologist. “We help educate parents and school teams so that supports can be put into place proactively.”

The School Liaison program follows children as long as they are in school. Clinicians participate in Special Education meetings and coordinate support services.

Still, they say, school administrations may be reluctant to provide additional services when they don’t fully understand the nature of the difficulties at hand.

For Sophie, the School Liaison Program found a smaller high school in her town, where dedicated staff made it easier to create a tailored program. A School Liaison clinician worked with the school to help them address Sophie’s challenges in the classroom, and also coordinated with Sophie’s therapist and her Dana-Farber medical team. Sophie excelled; in her senior year, she was accepted to college

“These children and their families have been through incredibly difficult circumstances and have had to navigate a myriad of systems to receive the care that they need,” said Lisa Northman, PhD, a staff psychologist for the program. “Our goal is to continue the support that these families have received through Dana-Farber as they segue into survivorship and navigate the new challenges they may face in the educational domain.”

Learn more about the School Liaison Program seminar series for patients and caregivers.