Rebecca views her MRI brain scan.
James A. Parcell--The Washington Post

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For a teenager with a brain tumor, life revolves around basketball, bowling, dances and lots of doctors' appointments.

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Rebecca Keeps Hectic
Pace Despite Tumor

C

an you spell `world' for me backwards?" the doctor asked.

Sixteen-year-old Rebecca Lilly concentrated hard and answered slowly:

"H -- T -- R -- A -- E."

Neurologist Roger Packer, director of the brain tumor program at Children's National Medical Center, was taken aback. His patient's answer was a startling example of the tricks the tumor plays on her these days.

As he does every month, Packer also tested Becca's balance, eyesight and coordination. The most obvious recent change was a loss of peripheral vision on the right.

"Are you bumping into things?" he asked.

Becca smiled sheepishly and started to tell the story. "On Saturday we were at this restaurant, and I ran into someone. It was -- um -- the man --"

"The waiter," said her father, Joe Lilly, supplying the word she couldn't think of.

"Oh, cool," said Packer, rolling his eyes. "Did you knock him down?"

"No," she said. "But there were a lot of noodles."

T

hey had gone to Slade's American Grill after a basketball game. Becca headed off to the bathroom. A waiter carrying a tray approached from her right, and she never saw him. There was a crash, and then a broken plate and a mess on the floor.

No one was hurt, but Becca was in tears -- frightened and embarrassed.

"He was on my right," she explained later. "I can't see half. My eyes don't work right."

Becca Lilly, of Takoma Park, has battled a malignant brain tumor for nearly six years. She has undergone every major form of cancer treatment -- four brain surgeries, two kinds of radiation and three types of chemotherapy. In November 1995, with her doctors running out of standard treatments for her, Becca became the first child with a brain tumor ever treated with gene therapy.

Maureen Lilly applies the finishing touches to Becca's hair before her school's Winter Ball.
James A. Parcell--The Washington Post

None of those treatments was able to keep the tumor from growing back. Over the past year, Becca has coped with growing symptoms while undergoing further experimental treatments.

The tumor is in the upper left part of Becca's brain, inside her left temple. It is growing around the rim of the cavity left by her last surgery. On recent magnetic resonance imaging (MRI) scans of her brain, it has shown jagged edges reaching into the surrounding tissue.

Even before the tumor was diagnosed, Becca had dyslexia, so reading and writing have never been easy for her. But she has grown more forgetful and has more trouble following fast conversations. She has to fish for ordinary words as she talks.

"Ketchup" may come out "gravy," and "last night" may come out "tomorrow." In the hospital recently, she called the wheelchair a "cart." And when the doctor said "world," her disrupted brain heard "earth."

The tumor and the treatments for it have caused a kind of aphasia, a difficulty with language similar to what victims of a mild stroke experience.

"Sometimes I don't know what to say," she told Packer this month.

And yet, what teenager -- or family -- has had a busier winter? Welcome to March Madness, Lilly-style.

B

ecca's Catholic Youth Organization basketball team made the league playoffs. So did her 13-year-old brother Joe's team. Their older sister, Anne Marie, plays for Marymount University's nationally ranked team, which reached the "sweet 16" round of the NCAA Division III national championships. Younger sister Sarah may have attended more basketball games this season than any other 5-year-old in the Washington area.

Becca is a junior at Good Counsel High School in Wheaton, where she takes a reduced academic load. Three mornings a week, she helps out with the preschool class at nearby St. Andrew's Apostle School.

Becca may now hold the local record for duckpin bowling in a prom dress and pearls.

Last Friday, she briefly addressed a congressional briefing on Capitol Hill for the National Coalition for Cancer Research. Sunday, she helped present the four-foot-tall Rebecca Lilly trophy to the Mid-Atlantic CYO champion in girls' basketball.

The Lillys had a personal tour of the White House -- a Christmas gift for Becca arranged by her friend Colleen McGowan, of Falls Church, who also has a brain tumor. The two families met with President Clinton for about 15 minutes and -- the highlight for Sarah -- also got to pet the First Cat, Socks.

A jar of jellybeans arrived by mail from Nancy and Ronald Reagan. Capt. John L. Bender, of Bethesda, sent Becca the bronze star he had been awarded in 1943 with a simple note: "To Rebecca Lilly -- A token of my admiration for your valor."

Rebecca pins a corsage on her date, Justin Smith, before they go out to dinner.
James A. Parcell--The Washington Post

A

nd while no one keeps statistics on such matters, Becca may now hold the local record for duckpin bowling in a prom dress and pearls.

"I might be going to a dance," Becca announced on the last day of January. Without telling anyone, she had called up her classmate Justin Smith, whom she met last year in computer class, and invited him to the Winter Ball at Good Counsel.

"No fear," said her sister Anne Marie. "She just asked him. Out of the blue. It was so Becca."

Her maternal grandmother, Adele Traber, offered to buy her a new dress for the occasion.

Becca went to three stores the first night and six the second, and still she couldn't decide on a dress. Finally, she settled on a long velvet burgundy one with spaghetti straps. It was open in the back but with a high neck in front that easily covered the intravenous catheter valve near her collarbone. To go with it, she chose black open-toed heels. "A little on the clunky side but very `in,' " said her mother, Maureen Lilly.

"I want to have my hair up," Becca said. "I don't want it in my face."

"She's so excited," Grandma reported. "Her eyes are dancing. Oh, to be 16 and a girl -- what can I say?"

She told Becca: "Dance every dance."

It didn't exactly work out that way. After dinner at the Anchor Inn, Becca and Justin showed up at the dance about 8:15. They hung out there in the gym for an hour or so, dancing a couple of cuts. Then they left to go bowling.

"When do we say we've put her through enough?"

Whose idea was that? "Mine, or maybe his -- I don't know," was Becca's cryptic answer. Whatever. Among the small crowd of regulars at the Glenmont Lanes that night, there was one young man in a tuxedo and one young woman in a floor-length dress with a wristlet of baby's breath and roses.

"It's not easy to bowl in a long dress," Becca noted after rolling a gutter ball. In her only concession to the duckpin decor, she had kicked off her black heels in favor of two-tone rental bowling shoes.

They bowled two strings, then went to Roy Rogers for chocolate shakes, and then he drove her home.

"The tumor is growing," neurologist Packer warned the Lillys after an MRI just before Thanksgiving. Even though Becca was "not at the point where we've run out of things to try," he asked them to consider a huge question:

"The real issue that you have to begin to think about, and help me think about, is how far do we go with this? When do we say we've put her through enough?

"My general approach is: You go ahead with treatment if the child is happy and reasonably well, and if there's a legitimate chance it could help her. But if she's really sick, we say enough is enough. I hope we never get there."

"I think we're in agreement with you there," Joe Lilly said.

The important thing, Packer noted, was that Becca "has somehow maintained a great quality of life, whatever we've given her."

"In terms of activities, is there anything we should tell her to avoid?" her mother wanted to know.

"You think we could stop her?" Packer joked. "If she's up for it, I think she should go for it."

In the waiting room, Becca was asleep on a couch.