The Fight of His Life

Kristina
Rolfes
August 1, 2014
After a brain tumor blindsided Kokayi and left him without the ability to walk, talk, or even swallow, he fought to get his life back.

Kokayi Thomas with his motherFifteen-year-old Kokayi Thomas had always been healthy and athletic, until last November when he started complaining of weakness in his right arm and leg. After a visit to the pediatrician, a battery of tests, and an MRI, Kokayi and his parents were shocked to hear the diagnosis: Kokayi had a brain tumor. Although considered low-grade, the tumor—pilocytic astrocytoma—was located on his brain stem. “In that one moment, with those few words, our world turned upside down,” recalls Kokayi’s mother, Debra Jeter-Thomas.

Kokayi underwent a suboccipital craniotomy to remove the tumor. The surgery was successful, but because the cerebellum was affected, Kokayi experienced a lack of muscle coordination and could not walk. He had increased weakness on his right side, and tremors. On top of that, he lost the ability to swallow effectively, had difficulty speaking, and experienced blurry vision.

The View from the Top

Kokayi Thomas undergoing physical therapy

At Kennedy Krieger’s inpatient rehabilitation unit, Kokayi underwent intense therapy, including physical, occupational, and speech, and steadily made progress. Soon, he was stable enough to be transferred to the Specialized Transition Program, the Institute’s day hospital program.

When physical therapist Katlyn Recchia first began working with Kokayi, he couldn’t walk without assistance or navigate his wheelchair, but he was determined to recover. Recchia told Kokayi that eventually, he would be able to walk to the top of the stairs at Kennedy Krieger and see the harbor. Two weeks later, they tried two flights of stairs, but Kokayi surprised her by saying, “We’re doing all four. I’m going to look at that water.”

“Kokayi has a great attitude, which is half the battle,” says Recchia. “He’ll say, ‘I don’t necessarily want to do this today, but I know I have to. I want to get better.’ You can’t ask for more out of a patient.”

Each day, Kokayi worked with the therapists on his short-term goals, and when he met those, they set new ones.

Buoyed by Aquatic Therapy

A key part of his regimen was intense therapy in the Institute’s state-of-the-art aquatic therapy pools, equipped with underwater treadmills, video systems, temperature controls, and hydraulic lifts that allow the floors to be raised and lowered for easy access by patients in wheelchairs.

Perhaps what’s best about aquatic therapy is the independence and freedom that comes from escaping the limitations of gravity, allowing patients to do more in the pool than is possible on land and achieve their therapeutic goals more quickly.

“With the underwater treadmill, Kokayi gets thirty minutes of cardiovascular activity using the natural resistance and buoyancy of water,” says Recchia. The pool’s multiple jets can increase this resistance, helping build muscle strength and coordination. And a video screen shows patients a view of their leg and foot placement from the underwater cameras as they walk, helping retrain a proper gait pattern while maintaining good posture alignment. “When you combine all that, it’s a very efficient therapy session,” explains Recchia.

The Art of Rehabilitation

Kokayi Thomas undergoing aquatic therapy

These days, Kokayi is able to walk short distances and climb stairs, and is much more independent with his wheelchair. His parents attribute his success to Kennedy Krieger’s ability to bring together the science of rehabilitation technology with therapists who know how to motivate patients. As Kokayi’s father explains, “It’s sheer art plus science.”

Kokayi’s parents credit the staff for helping him stay motivated. “Kokayi had a very talented and skilled group of inpatient and outpatient therapists who worked with him,” says his father, Dr. Duane Thomas. “The staff made Kennedy Krieger a home away from home. I can’t even put into words all the things they did on his behalf. Without their encouragement and dedication, he could not have made the progress he made.”

Kokayi Thomas with his father Duane Thomas

With the assistance of educational specialists at the Institute, Kokayi returned to school in the fall with all the needed services in place.

“I’m just so proud of him,” says his mom, Debra Jeter-Thomas. “I don’t know too many people who can go through a trauma like this and maintain that motivation. He never gave up.”

Kokayi still has goals he would like to achieve and will continue to work hard in outpatient therapy to achieve his potential. “He’s fought his way back, and he’s still fighting,” says his father. For Kokayi, the challenges he has faced from his brain tumor are mere stepping stones.