Hitting Cancer Out of the Park
Twelve-year-old Tyler can't wait to return to the baseball field. A ball player since he was four, Tyler started playing on his local t-ball team and worked his way up to a travel team, the Stafford River Bandits, where he has played every position and trains year-round. Since July 2010, that training has been limited to hospital corridors and his own backyard after Tyler was diagnosed with a medulloblastoma, the most common malignant brain tumor in children.
While playing catch in March 2010, Tyler's parents, Bill and Jeannette, noticed his head turning to the right a lot and were concerned he had a vision problem. After taking Tyler for a routine eye exam, they learned their son had nystagmus, an involuntary movement of the eyes that may result in some degree of vision loss. To rule out other issues, the optometrist also suggested a follow-up MRI, which was completed on July 6 at a local hospital near Tyler's home in Fredericksburg.
Jeannette, who said she "didn't think the MRI would be a big deal," recalled her shock at learning Tyler had a mass on his brain. The family immediately drove to Children's Hospital of Richmond's (CHoR) Medical College of Virginia Campus where they met with pediatric neurosurgeon Gary Tye, MD, the physician who had performed the same surgery on another local child three years earlier. On July 15, Dr. Tye removed the medulloblastoma during a five and a half hour procedure, and Tyler was admitted to CHoR's Pediatric Intensive Care Unit (PICU) for the first of five hospital stays.
The Road to Recovery
After spending 16 days in the hospital, Tyler returned home for a month to build his strength before beginning six weeks of daily radiation, making a total of 29 round trips from his home to the hospital. He also began his seventh grade year with homeschool studies provided by two local teachers.
Prior to receiving his first radiation treatment, Tyler's physicians harvested 15-16 million healthy stem cells from his bone marrow and then froze the cells and used them over the next five months for four stem cell transplants. On Nov. 18, Tyler began the first of four chemotherapy cycles, which included three days of intense medication, a day of rest and a stem cell transplant on the fifth day. After spending two or three weeks in the hospital, Tyler was discharged for a week and then returned to CHoR to begin the cycle again. By the end of his fourth cycle, Tyler and his parents had spent Thanksgiving, Christmas, New Year's and Valentine's Day in the hospital.
Although Jeannette said "being at the hospital for major holidays was hard," she emphasized the support they received from family, friends, hospital staff and even strangers who made sure "we didn't miss Christmas being there." In December, Bill and Jeannette decorated Tyler's room with a tree and holiday items from home and asked family and friends to send ornaments for the tree. The family was also adopted by a local family who provided gifts for all three of them, and on Christmas Day, Tyler was treated to one of his favorite foods, barbecue ribs, by hospital staff.
"He has quite a few lifelong friends from the Bone Marrow Transplant floor," Jeannette said. "They were very good to all of us."
The Clinical Coordinator for the Bone Marrow Transplant unit, Kevin Shimp, RN, BSN, CCRN, CNML, coordinated Tyler's care with his physicians and addressed the needs of Tyler and his parents during their four inpatient stays. Kevin, a lifelong fan of the Philadelphia Phillies and Baltimore Orioles, heard about Tyler's love of baseball and rival New York Yankees and formed an immediate bond with Tyler. During one of his inpatient stays, Kevin asked Bill to bring a wiffle ball and bat so he could practice with Tyler on the unit.
"It was a sight for sore eyes," remembered Kevin. "Tyler was connected to an IV pole with multiple lines taking a cut at my best pitches. The first day he was a little rusty, but each day his swing returned a little bit. He was smacking the ball back off my forehead before long."
On Feb. 26, Tyler was discharged following his fourth stem cell transplant. Since March, he and his parents have been making weekly trips to CHoR's Pediatric Hematology/Oncology Clinic for follow up tests and laboratory work. Kevin's wife, Jill Shimp, BSN, RN, CPON, and former Clinical Coordinator of the Pediatric Hematology/Oncology Clinic, has also worked with Tyler and his family since their first clinic visit last summer. Throughout Tyler's treatment, Jill coordinated his care with multiple hospital departments including radiation oncology, audiology, nutrition and radiology as well as home health.
"Tyler's family jumped right into the treatment and care for their son," Jill said. "They encouraged and empowered Tyler to beat this disease and never hesitated to ask clarifying questions."
Although Jill has since taken a new position at CHoR, she continues to work with Tyler's oncologist, Asadullah Khan, MD, and care for him during follow up clinic visits.
Dr. Tye, who removed Tyler's tumor last summer, has also remained part of Tyler's health care team, reviewing his head and spine MRIs and consulting with other specialists as needed. He believes CHoR's range of pediatric specialty services provides for both the medical and social needs of children and their families.
Because the radiation and chemotherapy altered Tyler's taste buds, one of his biggest struggles following treatment was eating. He worked with a nutritionist to regain the 10 pounds he lost and expand his menu choices. Now whenever Jeannette finds a food Tyler likes, she said it's not unusual for her to serve it for two weeks straight.
Since Tyler's chemotherapy also weakened his ankles, a common side effect, he has been receiving physical therapy through CHoR's Fredericksburg Therapy Center twice a week. Even though Jeannette and Bill got used to the 60-minute drive to Richmond, she said the proximity of the Fredericksburg location has "made it easy on us."
"Throughout Tyler's whole ordeal, he had a motto he often used, 'Life is Good'," said Jeannette. "Tyler used those words as his cell phone signature, wrote it on his white board in his hospital room and on the hundreds of thank you notes he wrote. At times, he had a better outlook than we did."
As Tyler gets stronger, he plans to return to the baseball field and in the fall, to school for eighth grade. This spring he was invited to a Richmond Flying Squirrels game, where he warmed up with some players and threw out the first pitch. Until he can play with his own team, Tyler said he'll keep practicing and cheering for his fellow River Bandits.