Rebecca enjoys tutoring 4-year-olds.
James A. Parcell--The Washington Post

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Drugs generally don't work well against brain tumors, but Rebecca Lilly tries one in her struggle against a stubborn cancer.

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Rebecca Tries Chemotherapy

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n the five years since her brain tumor was diagnosed, Rebecca Lilly had tried every major cancer treatment except one. Four open-brain surgeries, two types of radiation and a pioneering gene therapy.

Chemotherapy was the exception. Becca dreaded "chemo" and cringed when she heard the word. She knew little about how chemo attacked a cancer, but plenty about its toxic side effects -- the nausea and mouth sores and falling-out hair. Even brain surgery was less scary to her: Been there, done that. She vowed never to have chemo.

Late last summer, the tumor in her brain gave her no choice but to change her mind.

H

er brain scan was at noon, the Thursday before Labor Day. She lay still for an hour inside a giant computerized magnet at the National Institutes of Health Clinical Center as it took hundreds of cross-sectional pictures of the inside of her head.

The results would take a while, so Joe and Maureen Lilly took their daughter to lunch at Hamburger Hamlet. Then, on their way to meet with the doctors on the 13th floor of the Clinical Center, they picked up the large manila envelope of scans.

Joe Lilly could not wait for the doctors. In the elevator, he pulled out the glossy black-and-white scans and held them up to the ceiling light. By the time the elevator reached 13, he could tell the news was not good.

In the waiting room, Becca walked over to the picture window, then took a turn at the pinball machine in the corner. Joe Lilly sat down and continued searching the images of Becca's brain for telltale white spots.

"This is new," he said to Maureen, pointing out a gust of white. "It reaches farther back. We've never seen this much." He was hoping against hope that it would turn out to be scar tissue from her surgery.

Becca hugs her dog, Lady.
James A. Parcell--The Washington Post

T

he scene took a bizarre turn when Joe Lilly realized that the envelope mistakenly included, among the pictures of Becca's brain, two scans of another patient's knee. He showed them to Becca in an effort to break the tension.

"Uh, wrong problem!" she said.

Two doctors and a nurse invited Becca's parents into a small private room off the waiting area. Becca stayed behind. They closed the door and sat down at a round wooden table with a box of tissues on it.

Pediatric cancer specialist Frank Balis began by summarizing the brain scan. Joe Lilly's hunch was correct. The tumor was growing in several spots; it appeared at least 25 percent bigger than the month before. Her latest stopgap treatment with phenylacetate, a natural compound, clearly was not working.

Balis went over the options, the first of which was to forgo further treatment. "It would be a perfectly reasonable decision at this point to elect not to do any more treatment, at least for a while," he said.

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hemotherapy was the other possibility. Several experimental drug combinations -- promising but unproven -- were available from the National Cancer Institute. One factor in Becca's favor was that her tumor had never seen chemo and might therefore be more sensitive to it.

"The chance of anything we give her working at this point is diminishing," he cautioned. Probably nothing could make the tumor go away. The focus should be on symptoms, which sometimes could be controlled even when the scan showed tumor growth.

The Lillys had braced themselves for this, but nothing compared to hearing the words.

They faced a fearsome choice, riddled with uncertainty. "One of those forks in the road," Balis called it. There was "no real rational way" to decide, he admitted. "It gets down to a personal decision."

Would Becca ask about the brain scan? he wondered. "Probably not," Maureen Lilly said. "We think she just tunes out on that kind of discussion."

The Lillys had braced themselves for this, but nothing compared to hearing the words.

The meeting wound down. The Lillys asked for some time by themselves, and the others quietly left the room.

F

ive minutes later, Joe and Maureen Lilly emerged red-eyed and found Becca playing cards in the waiting room. They had decided not to go into detail about the latest setback until they could discuss their next move. They were determined to put up a brave front before her.

Becca looked up and said, "Mom, why were you crying?"

Maureen Lilly hedged with a comment about the need to get going, and they walked toward the elevator. But she also knew her 16-year-old daughter deserved an answer, so she did the best she could.

She reminded Becca they had hoped she could continue treatment with phenylacetate. But the brain scan showed the cancer growing, so her therapy had to be stopped. They didn't know yet what to try instead.

Becca didn't ask any more questions on the way home.

Becca Lilly helps out with a class of 4-year-olds at St. Andrew Apostle Preschool.
James A. Parcell--The Washington Post

T

"I got no reaction," Maureen Lilly said. "I couldn't tell what part of the conversation she picked up on, or even whether she picked up on any of it."

One year ago this week, Becca Lilly of Takoma Park became the first child with a brain tumor to undergo gene therapy. It didn't work a miracle.

Becca has a high-grade malignant glioma, one of the most aggressive cancers. Of children diagnosed with that type of tumor, only one in five is alive three years after diagnosis. She has already beaten those long odds, but no treatment has kept her tumor from growing back.

H

er symptoms have remained fairly manageable -- chronic headaches and fatigue, punctuated by occasional brief spells of dizziness and double vision. But with the tumor growing and with further surgery and radiation no longer possible, her doctors this fall turned to experimental chemotherapy.

Chemo is not standard treatment for most brain tumors, mainly because of the difficulty of getting drugs into the brain. The tiny blood vessels that line the brain are much more tightly "woven" than others, forming a barrier that prevents toxic substances from leaking into the exquisitely sensitive tissue.

The chemotherapy Becca's doctors had in mind combined a proven anti-cancer drug called carboplatin with an experimental substance called RMP-7 designed to briefly open a "window" in the blood-brain barrier. If it worked, the carboplatin would pass through that window and attack the tumor.

"She wants to continue fighting, and so do I."

The carboplatin/RMP-7 combination is in the earliest stage of testing at NIH; Becca was only the third child to receive it. She had two rounds, the first in mid-September and the second late last month.

Ten days after her first round of chemo, Becca attended the homecoming dinner dance at Good Counsel High School with her date, Nick Lee. She wore a black velvet dress with a high cut and a neck scarf to hide the catheter in her chest. She didn't miss a single dance.

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ll fall, she has kept up a teenager's stop-and-go pace, even while learning to live with the disease that, in writer Susan Sontag's words, "doesn't knock before it enters."

The Lillys worked hard to ease Becca past her mental block against chemotherapy. But it was neurologist Roger Packer, the doctor she knew best and trusted most, who finally turned her around.

One of the hardest things for a cancer patient, Packer told Becca, was to consider another tough treatment when she was feeling good. The phenylacetate she had been taking was relatively nontoxic but did not attack the tumor directly, as chemotherapy would. Now they needed to try something else.

What he suggested was a kind of chemotherapy. He said the word carefully, knowing it was a verbal hand grenade.

"I will lose my hair, won't I?"Becca said.

Probably, Packer admitted.

"Like all of it?"

"It might just get thin," he said. "But even if you lose it, it'll grow back when you stop the [chemo]."

H

e explained how the intravenous pump would work and told her the biggest danger would come about two weeks after the two-day dose of chemo. Her blood counts would fall, leaving her vulnerable to infections. She might have to go into the hospital and take strong antibiotics.

"I think this is the best way to go," Packer said.

Becca nodded and hopped down from the examining table.

"She's awful strong," Packer told her parents. "She wants to continue on fighting, and so do I, unless you have a different feeling about that."

They didn't.

Becca had taken the news about chemo so calmly that her parents worried she had somehow tuned out and missed it. The next morning, Maureen Lilly asked Becca what she thought Packer had said.

"The tumor is growing, and I'm going to get chemo," Becca said.

That same week, Becca started her junior year at Good Counsel High in Wheaton. "Very confusing" was her summary of Day One.