Alexis: Brain Tumor (Juvenile Pilocytic Astrocytoma)

“I knew she would be very sick after each treatment. Amazingly, although Alexis missed nearly a half year of school, she still managed to keep up with her classmates.”

- Nina, Mom

“Mommy, I see two!” These words marked the beginning of a very long journey for Alexis and her family. Not only was the 3-year-old girl seeing double, but she complained of headaches and often covered one eye to see clearly. Her mother, Nina, took Alexis to an ophthalmologist for an eye exam, but the doctor didn’t see anything to explain the symptoms.

Within days, Alexis woke up with a terrible headache and vomiting. Her worried parents took her to the hospital for an MRI. The news was not good. Alexis had a benign brain tumor called a juvenile pilocytic astrocytoma pressing on her optic nerve. The tumor was causing increased pressure inside her skull.

In a 10-hour operation at Shands Children’s Hospital at the University of Florida, most of the six-centimeter tumor was removed — the remainder was in a location dangerously close to a critical center of Alexis’ brain. There had also been a serious complication. Her carotid artery had been nicked during surgery, causing a stroke and weakness on Alexis’ left side. Alexis says, “I was a little scared. But my brother Nicolas (age 10) really cheered me up. He was the first person to make me laugh after the surgery.”

“Alexis had no use of her left side,” remembers her father Samer. “After three weeks in the hospital, she had to be admitted to a pediatric rehabilitation center in Gainesville for intensive physical and occupational therapy in order to regain function. It was an incredibly difficult time for all of us.”

Although Nina, an internist, and Samer, an interventional cardiologist, are both physicians, it didn’t make dealing with their daughter’s condition any easier. “This was unknown territory for us,” comments Samer. “We quickly became just parents with a very sick little girl. I made a conscious effort not to get in the way of any medical decisions that were being made by her doctors.”

After giving Alexis a chance to rest and recover after almost two months in the hospital and the rehabilitation center, Nina and Samer took their daughter to Nemours Children's Health, Jacksonville, where she was seen by oncologist Paul Pitel, MD. Alexis underwent 20 months of chemotherapy.

“It was agonizing to watch her go through chemo,” says Nina. “I knew she would be very sick after each treatment. Amazingly, although Alexis missed nearly a half year of school, she still managed to keep up with her classmates.”

At age eight, Alexis shows little sign of her long ordeal. She wears glasses because of a visual problem caused by the tumor and is still undergoing therapy to regain full function on her left side, but has resumed swimming, horseback riding and her usual activities. Alexis was also treated by the clinic’s Department of Endocrinology for a growth hormone deficiency resulting from the tumor.

Recently, Alexis competed in the Beaches Fine Arts Series Triathlon for Kids in Jacksonville. “I trained by biking around the neighborhood, swimming at the YMCA, and running on a treadmill at home.”

Her entire family, who relied on their strong faith and a supportive family to get through their daughter’s illness, considers themselves blessed to have had great doctors who helped Alexis get back to being the smiling, active girl she had been before her illness.