Sean Fredella’s battle with cancer began on Valentine’s Day of 2003 when he was just two years old. That was the first of three occurrences of acute lymphocytic leukemia for which he needed radiation, chemotherapy and, ultimately, a bone marrow transplant.
In 2011, Sean was diagnosed with a rare adult tumor called “esthesioneuroblastoma” – one that is found in only 150 patients around the world each year. He underwent a craniotomy (an operation during which part of the bone from the skull is temporarily removed to expose the brain) in 2012 and again received high dosages of chemotherapy. The same year, he had surgery to remove 22 cancerous lymph nodes from his neck.
Today, after care from three outstanding healthcare facilities, including The Alabama Center for Childhood Cancer and Blood Disorders (ACCCBD) at Children’s of Alabama, 13-year-old Sean is once again cancer-free. And even though he’s out of treatment, ACCCBD’s Hope-and-Cope Psychosocial Program is helping Sean transition back into his school and his community through its School/Social Transition and Reentry (STAR) service.
“Childhood cancer can seriously disrupt the natural course of the school experience, and some children will require educational assistance in order to be successful,” says Avi Madan-Swain, PhD and director, Hope-and-Cope. “Our goal with STAR is to empower parents and survivors to understand their educational rights and to successfully navigate the educational system.”
Neuropsychological testing completed by Hope-and-Cope from the time of Sean’s diagnosis helped pinpoint his specific strengths and weaknesses – for example, some deficits in organizational skills. This information was shared with Sean’s parents, who began working with STAR educational liaison, Caroline Davis.
“When Sean was sick, I wasn’t thinking about ‘late effects’ – I just wanted to save his life,” says Nell Fredella, Sean’s mother. “Today, he looks like a normal kid. But chemo and radiation inflict lasting damage upon these children. So for several years now, Caroline has been going with me to meet with Sean’s counselors and teachers in the Mountain Brook School System. She is able to explain very professionally how the drugs and radiation have impacted Sean.”
Appropriate accommodations have been made, including additional time to complete tests and a weekly one-hour session with a tutor. “Without his tutor and Caroline’s assistance, Sean would not have passed the 5th grade,” Nell says.
With the necessary educational support in place, Sean is succeeding both academically and socially. “Seeing childhood cancer survivors like Sean keep up with normal routines that are important to a good quality of life is truly remarkable,” Caroline says.
“It’s not just about the medicine,” adds Nell. “There are so many things that families and children need throughout hospitalization and beyond. I don’t know what we would have done without Dr. Avi and her team.”