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A battle with a pilomyxoid astrocytoma

Riley Danbusky endured seven surgeries to remove a recurring pilomyxoid astrocytoma — an aggressive type of brain tumor. She now dreams of becoming a professional soccer player.

A 10-year-old fifth grader, Riley has no trouble running around a soccer field or playing dance video games with her sister for hours. But the Roslyn girl's movement and balance were a challenge eight years ago, when her journey with a pilomyxoid astrocytoma began.

"We'd just had our second daughter when we noticed Riley wanted to be picked up and carried a lot more," said Daniel Danbusky, Riley's father. "She was 2 years old and didn't want to walk. We thought she was behaving that way because we had a new baby in the house. One day, another parent at a playground commented that Riley's gait seemed different and she looked unsteady. That was a red flag for us."

Identifying Riley's pilomyxoid astrocytoma

The Danbuskys' pediatrician ruled out an inner ear infection, yet her balance problems kept getting worse. In June 2009, Riley saw a pediatric neurologist, who ordered a magnetic resonance imaging (MRI) study. When the scan revealed a mass in Riley's brain, she was referred to Mark Mittler, MD, codirector of pediatric neurosurgery at Cohen Children's Medical Center. Riley needed surgery.

"The tumor was located in her cerebellum, at the back of her brain, and was about the size of a golf ball," Dr. Mittler said. "It was compressing the pathway that cerebrospinal fluid typically takes to leave the brain, causing hydrocephalus - an accumulation of fluid within the brain."

Dr. Mittler removed Riley's tumor a few days later and ordered extensive testing of the mass. "It became clear that we were dealing with an unusual growth known as a pilomyxoid astrocytoma," Dr. Mittler recalled. "This type of tumor tends to be insidious in its growth, and I knew achieving a cure could be challenging."

Free of brain tumors

Over the next 18 months, Riley needed five more surgeries when the tumor recurred and again obstructed the flow of her cerebrospinal fluid. The tumor recurred in the same area each time and was safe to remove surgically without the need for chemotherapy or radiation therapy. Through it all, Riley remained positive and comical.

"Riley was very strong," said her mom, Pamela Danbusky. "Stronger than she knew."

In late 2011, after more than a year of clear MRIs, Dr. Mittler noticed a single, small, slow-growing nodule in Riley's brain.

At first, the care team monitored her situation to make sure no more growths would develop. After a few months of otherwise tumor-free MRIs, Dr. Mittler removed the nodule.

"We hoped that this surgery would be the final blow to the tumor," he said.

It worked. Since then, Riley's yearly MRIs have shown no sign of tumor recurrence.

quotation mark I carried Riley on my shoulders for the entire survivors’ lap. That was the first time I’d heard someone call her a survivor. Riley and the team at Cohen Children’s had carried Pamela and me for four years, so I wanted to carry her.
Daniel Danbusky

Relay for Life

Riley reached five years being tumor-free last spring, so she celebrated by creating a poster and sending it to Dr. Mittler. Cohen Children's continues to be part of her life.

"Since I was 5, I've asked kids to bring toys to my birthday parties so that we can donate them to Cohen Children's," Riley said.

For her parents, Riley's experience was a reminder to cherish every day and make as many memories with their daughters as possible.

One particular memory that Mr. Danbusky cherishes is from a Relay for Life event that he and Riley attended in 2013, a year after her final surgery.

"I carried Riley on my shoulders for the entire survivors' lap," Mr. Danbusky said. "That was the first time I'd heard someone call her a survivor. Riley and the team at Cohen Children's had carried Pamela and me for four years, so I wanted to carry her."

Pilomyxoid astrocytoma vs. pilocytic astrocytoma

Less than two decades ago, pilomyxoid astrocytomas weren't commonly recognized by doctors, according to Dr. Mittler.

Many pilomyxoid astrocytomas were misdiagnosed as pilocytic astrocytomas, which account for almost one-fifth of pediatric brain tumors, according to the American Cancer Society. The two types of astrocytoma are similar, but have a key difference.

"Pilocytic astrocytomas generally don't come back after we remove them," Dr. Mittler said. "Pilomyxoid astrocytomas, on the other hand, are rather difficult to get rid of because they tend to come back. They are unusual because their pathology looks fairly harmless but they behave aggressively, like a cross between a benign tumor and a malignant one."

Brain tumors are among the most common solid tumors that occur in childhood. Their symptoms are often related to specific locations in the brain and may include headache, nausea, visual disturbances, vomiting, weakness, difficulty walking or unusual behaviors.

See how the Cohen Children’s Childhood Brain and Spinal Cord Tumor Center helps kids and their families:
<i>U.S. News & World Report</i> has named Cohen Children’s one of the best children’s hospitals for neurology and neurosurgery for the past eight years. See why:
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