How a Routine Eye Exam Revealed This Boy’s Brain Tumor

When her then six-year-old son, Walker, was diagnosed with a brain tumor during a routine eye exam, New York City mom Tara Lipton hit the ground running and won't stop until childhood brain cancer gets the attention that it needs.

Tara Lipton will remember what should have been an ordinary summer afternoon for the rest of her life.

The New York City mother of four had taken her youngest son Walker, then 6, for a routine eye exam and the doctor told her that her son needed an MRI.

“I asked ‘when?’ and she said ‘now,'” Lipton recalls. An MRI of his brain quickly confirmed what the doctor suspected. Walker had a medulloblastoma, the most common type of childhood brain tumor. During a routine exam, eye doctors can detect changes in the field of vision or swelling of the optic nerve that may indicate brain cancer. Brain cancer is one of the shocking diseases that eye doctors find first.

Pediatric brain tumors

Brain and spinal cord tumors are the second most common cancers diagnosed in children, accounting for about one in four childhood cancers. More than 4,000 brain and spinal cord tumors are diagnosed each year in children and teens, according to the American Cancer Society.

Brain cancer can have symptoms—including these eight silent signs—but Walker’s diagnosis came out of nowhere. “Like any kid, he just loved having fun, being with his brother and sisters, going to school—there was absolutely no reason to imagine he had cancer,” says Lipton.

Lipton was able to assemble a team of oncologists and surgeons to help save her son’s life: She is a board member at the Children’s Cancer and Blood Foundation and had just served as co-chair for the group’s big fundraising benefit, so she literally had some of New York City’s top cancer experts on speed dial, although she never expected to use these numbers for such a personal reason.

“The surgeons were able to surgically remove 100 percent of the tumor,” she says. “We are very lucky.” After the surgery, Walker began a rigorous regimen of radiation and chemotherapy to kill any errant cancer cells. With their three older children away at summer camp, Lipton and her husband focused entirely on Walker and his recovery. Their summer was punctuated with visits to the emergency room whenever Walker got a fever to make sure his chemotherapy port wasn’t infected, among other scares.

Raising awareness for pediatric brain tumors

Now, it’s been two years since Walker finished cancer treatment. He still goes for regular MRIs to make sure the tumor hasn’t returned and so far, so good.

The turn of events has changed his family forever. “We know how fragile life can be,” his mom says. Lipton has channeled her energy into raising money and awareness for earlier detection and better, more tolerable treatment of children’s brain cancer. She is working with the Children’s Brain Tumor Project and helped raise $450,000 for rare and inoperable childhood brain tumors during their most recent benefit. “Pediatric cancer is not sexy and it has not gotten the attention that it needs. This has become my life’s mission,” she says.

Tara and Walker Liptoncourtesy Heidi Green Photography

Lipton doesn’t want other children to go through what Walker did. Many life-saving cancer therapies can cause collateral damage and the dosing and regimens have been the same for more than 50 years. Walker now sees an endocrinologist because the radiation affected his thyroid and the chemotherapy caused reflux which still affects his appetite.

Chemotherapy and radiation provide a cure, but this often comes at a cost, says one of Walker’s surgeons, Mark M. Souweidane, MD, vice chairman, Department of Neurological Surgery and Director, Pediatric Neurosurgery Weill Cornell Medicine/New York-Presbyterian.”Kids survive but they can have stunted growth, cognitive delays, academic decline, and secondary cancers,” he says. But “if we have genetic and molecular profiles that give us a good sense of the tumor’s behavior, we can know if a cancer has a better prognosis and can reel back therapy and look at deescalating radiation and lowering chemotherapy doses to reduce toxicity while maintaining survival.”

A changing approach

The way doctors look at and approach cancer has changed dramatically in recent years. “We want to understand the molecular and genomic basis for cellular behavior,” he says. “We are increasingly able to sequence brain cancers for their genomic make-up and are working to find new, less invasive ways to deliver drugs to tumor sites.”

The goal and real hope is to find a drug that attacks the specific genetic signatures of a given tumor, he says. This has become a reality in many cancers including the potentially fatal form of skin cancer melanoma as well as breast, lung, and kidney cancer. This is among the 21 reassuring things scientists wish you knew about cancer.

“I would like to see an imaging system where we can identify brain tumors at the DNA or molecular level, much better avenues of drug delivery so we have tools to get more drug where we want it and less where we don’t,” says Dr. Souweidane. His pediatric neurosurgery research lab is part of the Children’s Brain Tumor Project and is focused on the promise of local delivery in treating brain tumors in children. Such local delivery would allow the drug to get passed the blood-brain barrier, which is tasked with protecting the brain from anything toxic in the blood.

It’s parents like Lipton and the advocacy work and fundraising they do that is helping to move the needle. Read on to meet more parents fighting to end childhood cancer.

Sources

Denise Mann, MS
Denise Mann is a freelance health writer whose articles regularly appear in WebMD, HealthDay, and other consumer health portals. She has received numerous awards, including the Arthritis Foundation's Northeast Region Prize for Online Journalism; the Excellence in Women's Health Research Journalism Award; the Journalistic Achievement Award from the American Society for Aesthetic Plastic Surgery; National Newsmaker of the Year by the Community Anti-Drug Coalitions of America; the Gold Award for Best Service Journalism from the Magazine Association of the Southeast; a Bronze Award from The American Society of Healthcare Publication Editors (for a cover story she wrote in Plastic Surgery Practice magazine); and an honorable mention in the International Osteoporosis Foundation Journalism Awards. She was part of the writing team awarded a 2008 Sigma Delta Chi award for her part in a WebMD series on autism. Her first foray into health reporting was with the Medical Tribune News Service, where her articles appeared regularly in such newspapers as the Detroit Free Press, Chicago Sun-Times, Dallas Morning News, and Los Angeles Daily News. Mann received a graduate degree from the Medill School of Journalism at Northwestern University in Evanston, Ill., and her undergraduate degree from Lehigh University in Bethlehem, Pa. She lives in New York with her husband David; sons Teddy and Evan; and their miniature schnauzer, Perri Winkle Blu.