December 14, 2005

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Palo Alto Online

Hunting the silent killer

by Sue Dremann

Brain cancer can be a silent killer, stalking the mind cell by cell. By the time most of its victims discover it's there, it is too late.

Cancer established itself with devastating efficiency in Brian Vickery's brain. By the time he was diagnosed with primary malignant central-nervous-system lymphoma, the vice president at Roche Bioscience -- an internationally known scientist -- was given only three weeks to live.

"In 48 hours, we locked the doors to the house, took our daughter, Elizabet, out of seventh grade and left with two cats and a suitcase. We flew to Sloan-Kettering Cancer Center in New York City and hoped for the best," Meredith Warshaw, Vickery's widow, said.

But the cancer transformed Vickery into a different person.

"It's hard to picture it. The vacant stare, not remembering the person's name; not knowing if you want one kind of cheese or another," Elizabet Warshaw-Vickery, 15, said. Brain cancer changes all aspects of the person and the personality in general. "You lose your sense of self, your whole aspect of being changes, things such as tolerance, or even what type of music you like changes."

Depending on where the tumors are situated, patients can lose the ability to speak, walk, brush their teeth, feed themselves or maintain their balance, she said.

Three years after Vickery's death in 2002, brain cancer has taken mother and daughter on another kind of journey. The pair have turned their personal tragedy into the Future Brain Cancer Institute, a Palo Alto nonprofit organization dedicated to finding cures for brain cancer and offering support to patients and their families. The institute has a research partnership with UCSF to better understand the mechanisms of how brain tumors work.

It's a natural fit for Warshaw, a neurophysiologist and researcher by trade.

Unlike many other types of cancer, there are 126 different kinds of brain tumors currently known, said Warshaw, the institute's CEO and scientific director. The statistics are formidable. Brain cancer is the leading cause of cancer deaths in children, she said. It is the second highest cause of death in males ages 20 to 29, according to the National Cancer Institute.

"Many treatments are a shot in the dark. Chemotherapeutic drugs used are often used for other cancers. They are not formulated for brain tumors; the mechanism of action is not known," Warshaw said.

One goal of the Future Brain Cancer Institute is to find drugs and treatments that will target cancers that attach to specific receptors in the brain. The trick is for specific enzymes on the brain's receptors to be able to metabolize the drug.

The Future Brain Cancer Institute differs from other organizations in that its monies will fund a research program it directs, as opposed to giving out grants piece-meal for individual university researchers' pet projects, Warshaw said.

Brain-cancer research is largely under-funded, she added. Even though last year, brain tumors affected 190,000 people -- nearly the same number as those diagnosed with breast cancer -- government funding is less than one-fifth that given for breast cancer.

Besides research, the institute offers information and support to 60 local people with brain tumors, helping them navigate the medical, emotional and social channels.

The support is crucial. Brain cancer is stigmatizing for its sufferers and their families.

"People don't want to be associated with it because it's so powerful and scary," Warshaw-Vickery said.

"We felt very isolated, there was very little friendship or family support," her mother added.

Public education regarding the roles of stress, diet and environmental factors in brain tumor development are also part of the institute's work. For example, diets high in sugar are linked to brain cancers in children, Warshaw said.

Mother and daughter are betting everything on the institute, even refinancing their home. The idea for the institute sprung to mind soon after Vickery's death.

On the return flight from New York, Warshaw read a magazine article about a wealthy man who put $75 million of his own money into three research projects: cloning his dog, anti-aging research and finding a fuel source from marsh weeds in Africa. Some of the projects proved successful.

"I thought, 'If all it takes is private funding to get things going...'" she said.

Two years ago, mother and daughter were brainstorming while walking from the Saturday morning farmers' market past the Laning Chateau, the opulent building where Warshaw and Vickery once lived on the fourth floor. At 325 Forest Ave., they saw a "For Lease" sign for the former Palo Alto Chamber of Commerce offices. Warshaw-Vickery told her mother this was the place and time to start the institute.

"I said, 'There is no way I could take this risk,'" Warshaw said. But with her daughter's coaxing, she signed a three-year lease. The only piece of furniture they had was a $40 folding table from Costco.

Now the offices are filled with furniture donated by people who believe in their cause.

Sitting in their office, the two women discussed the sacrifices they make. Outside, a chilling wind was biting through double layers of clothing, but in their unheated office, mother and daughter were laughing.

"We haven't turned the heat on in our house," Warshaw-Vickery said. "We're wearing five layers of clothes. I'm still wearing the coat I bought in New York."

"We don't entertain; we don't go out to eat," Warshaw said.

When Warshaw-Vickery, a Palo Alto High school senior, leaves for college next year, her Social Security survivor's benefits will stop. But mother and daughter remain dedicated.

Warshaw works full time on the institute, offering support services for tumor victims and their families. Warshaw-Vickery spends 20 to 25 hours each week on the Web site and on public relations. Her Cranes for Cancer project organized Jordan Middle School students to make hundreds of origami cranes. A fund drive and crane sale by students raised $6,000. Her Run for the Future, a run/walk fundraiser at the Palo Alto Baylands, attracted 600 runners and raised $35,000.

Registration is currently open for a third run on April 30, 2006.

The Future Brain Cancer Institute has attracted 200 volunteers, but Warshaw said the organization needs immediate funding to hire three or four key people: a grant writer/development coordinator, a social worker for support services, a research associate and someone to take Warshaw-Vickery's place when she leaves for college.

She is awaiting word of a hopeful acceptance to Yale University. She wants to study neurobiology and find cures for the disease that changed her father -- and their lives -- so dramatically. For more information on the Future Brain Cancer Institute, contact Elizabet Warshaw-Vickery at (650) 328-7900 or e-mail hobbitinthesky@yahoo.com, or visit www.saveyourbrain.org.

Staff Writer Sue Dremann can be reached at sdremann@paweekly.com.

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