This East Islip High School freshman, 15, has already experienced a lifetime of medical care and hospital visits to treat her Langerhans cell histiocytosis (LCH, see "Primer" below).
LCH usually responds well to treatment, but Taylor’s case is different. In 2010, she and her family learned that the disease was affecting her central nervous system.
“I asked, ‘LCH is better than leukemia, right?’ ” said Taylor’s mother, Teresa Ryan. “What I soon realized was that there is a clear road map for treating leukemia, but not for LCH of the central nervous system. The unknown was terrifying.”
Taylor’s LCH of the central nervous system causes severe headaches, hand tremors and visual disturbances. It also produces unpredictable seizures that trigger numbness and blindness on her right side, plus weakness and dizziness.
“Taylor can go weeks or months without flare-ups and then have an extended period with multiple episodes,” said her pediatric hematologist/oncologist, Carolyn Fein Levy, MD. Dr. Fein Levy leads the Pediatric Oncology Rare Tumor and Sarcoma Program at Cohen Children’s Medical Center. “This disease is rare, but LCH of the central nervous system, like Taylor’s, is rarer still. Treating it is very challenging.”
A wide-ranging search
Since 2010, Taylor’s care team at Cohen Children’s has collaborated with an international LCH specialist at Texas Children’s Hospital.
“I could never thank the physicians at Cohen Children’s enough for seeking out the highest level of expertise for Taylor,” Ms. Ryan said. “They don’t stop until they come up with the best plan for her.”
So far, an effective long-term treatment remains elusive. Taylor is one of seven patients around the country being treated with this experimental regimen. Her initial response looked promising. However, she began having more episodes, so the medical team modified her dosing and is exploring other treatment options.
“While we work to control her symptoms and put Taylor’s LCH of the central nervous system into remission, she has a tremendously positive attitude that serves her well,” Dr. Fein Levy said.
Missing school and sports is hard for Taylor. Despite feeling drained after a five-day course of chemotherapy, she still went to a soccer game two days later to cheer on her teammates.
“Taylor thought she would be finished with LCH by the end of elementary school, and then by the end of middle school, and now she’s in high school,” Ms. Ryan said. “Her positivity has pushed her this far. She always hopes.”
Taylor may not see light at the end of the tunnel right now, but optimism and trust in her care team illuminate the way.