In April 2015, when Ben was 7 years old, his parents, Meg and Leslie, noticed his balance was off. At first, they were concerned about concussion, since he had hit his head more than once after falling and had complained of headaches. But when his symptoms worsened and he began vomiting, Meg and Leslie feared something just wasn’t right.
They took him to get an MRI, and that’s when they discovered Ben had a brain tumor. Ben immediately underwent surgery to remove the tumor, which was located on his cerebellum. Although the surgery was a success, Ben experienced motor and visual impairments, including double vision.
When the neurosurgeon recommended Kennedy Krieger’s inpatient rehabilitation program, Meg and Leslie agreed without hesitation, having already heard of Kennedy Krieger’s reputation as the best place for brain injury rehabilitation.
Like all patients in the inpatient rehabilitation program, Ben received therapy from many different disciplines—occupational, physical, speech, recreation, and psychology. This team approach ensures that all of a child’s needs are met, including emotional needs, a critical aspect of care especially after cancer diagnosis and treatment.
“Telling Ben he had cancer was the hardest day of our lives,” recalls Leslie. “The look on his face…I’ll never forget it…He was very, very scared.” The team at Kennedy Krieger helped the family get through this emotional time. His child life therapist knew how much Ben loved Harry Potter, so she created a Harry Potter-themed book to help him understand the situation. “I will never forget that moment and how she knew just what to do,” says Leslie.
Ben received a comprehensive neuropsychological assessment at Kennedy Krieger. Neuropsychologist Cynthia Salorio, PhD, determined that although Ben’s fine motor skills and vision were impaired, “from a cognitive standpoint he looked amazingly good.” In fact, his IQ was one of the highest she’d ever seen after a brain surgery.
Still, he was weak and needed to build strength and endurance. He underwent several hours of therapy each day. Despite the hard work, it was fun because the therapists knew how to tailor therapy to Ben’s interests.
After a second surgery, Ben transitioned to the Institute’s Specialized Transition Program, where he continued his intensive therapy along with classroom instruction so he wouldn’t fall behind in school.
Today, Ben is finishing up second grade and, although he is still recovering, appears unfazed by everything he has been through. “I just like being at Kennedy Krieger—it’s a pretty fun alternative to school,” says Ben, without a hint of irony.
It’s been a long and difficult journey, but Leslie and Meg feel reassured knowing that Kennedy Krieger will continue to monitor Ben for any concerns as he grows. They know their son is in the best of hands.
“The team of doctors and therapists [at Kennedy Krieger] are unlike anything I’ve ever seen anywhere,” says Meg. “They’re just so caring and they created such a safe and wonderful and supportive environment for Ben. It’s just an amazing place.”