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Medulloblastoma (Brain Tumor): Jacqueline's Story

Medulloblastoma (Brain Tumor): Jacqueline's Story

Medulloblastoma (Brain Tumor): Jacqueline's Story

It was the first half of freshman year and Jacqueline had a heavy course load. She was 15 years old, taking all honors classes, and working very hard. At first, her headaches seemed to be related to stress.

“The last thing you think with a teenager is brain tumor,” said her mother, Sharon, of Conshohocken, PA.

The Monday before Christmas her pediatrician found Jacqueline had an ear infection and prescribed antibiotics. About a week later, she was dizzy and was taken to the emergency room at Abington Memorial Hospital. A CT scan found something behind Jacqueline’s right ear.

That night she was brought to the Cancer Center at The Children’s Hospital of Philadelphia and New Year’s Eve morning, Jacqueline had a golf ball-size pediatric brain tumor removed by neurosurgeon Phillip B. Storm, MD. More than 20 people, relatives and neighbors, visited Jacqueline's family in the waiting room while the operation took place.

The brain tumor was completely removed but it was a malignant cancer, medulloblastoma, which can spread to other areas of the central nervous system, especially around the spinal cord. A combination of surgery, radiation, and chemotherapy is usually needed to control these tumors.

Surgery, then radiation and chemo

Jacqueline was in the Hospital for a week, and then spent six weeks at home recovering from the surgery. She was about to start a year of treatment to stop the cancer from spreading and to cure it.

“We tried to think of it as the beginning of being cancer free,” Sharon said.

In fact, Jacqueline says she was cancer free from the day of the surgery. A spinal tap found no tumor cells in the spinal fluid. MRIs after the surgery also came back clean of cancer.

The follow-up treatment was described as an “insurance policy,” Sharon said. “They know if they don’t do it, it comes back. They know if they do do it, it often doesn’t come back.”

Ups and downs of treatment

The insurance policy required 31 radiation treatments and 48 weeks of chemotherapy. The treatments came in six-week cycles and the last cycle ended this April.

The routine was to check in at registration, go to triage, have her weight, blood pressure and temperature checked, then blood work. Her oncologist, Peter C. Phillips, MD, or a nurse practitioner would speak to Jacqueline and her parents, and answer any questions. Nurses would administer intravenous fluids and medicines. Sharon praised the entire team at CHOP for the courteous and caring relationship with each patient.

Treatments can be hard on the patient. Jacqueline lost weight and her hair. Some days she had trouble with nausea and weakness. Other days she would feel fine. Dr. Phillips told Jacqueline, “Biological systems do not work in a straight line.”

Some days will be good and some bad, and that is to be expected.

A return to dancing and school

As she neared the end of treatments, Jacqueline returned to dancing. She had spent years gaining the strength to go en pointe in ballet and lost the ability soon after cancer treatments. Dancing is hard, but she is doing it, her mother said.

She also returned to high school full time this year after missing much of her freshman year. Through hard work at home and with the school, Jacqueline completed her freshman year on time despite the time out of school.

When Jacqueline started the last course of treatment in February 2010, Sharon wrote in her online journal that they approached the end of treatments at CHOP with hope. She said, “Jacqueline and I both agree that this year has been the fastest year ever and full of blessings throughout the journey.”


Originally posted: July 2011

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