L

ast fall, the tumor was back again -- a relapse or "recurrence."

"At what point do you become a survivor?" Maureen Lilly wondered aloud. "I guess you're a survivor if you're here the next day."

Finally, the pathologist returned to the operating room with her report on the first frozen specimen: malignant tumor. Schiff, with mini-binoculars poking out from his glasses, resumed work. He cleaned out the visible cancer, then cut six tiny specimens from the surrounding tissue, the tumor's margins. Each sample was placed in a yellow-topped plastic cup, tagged and numbered, and rushed to the lab. He'd continue to cut until the margins were found free of cancer.

Becca's parents and older sister visit her immediately after her nine-hour surgery.
James A. Parcell--The Washington Post

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In less than five minutes, the climactic gene therapy part of the operation was over.

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Another lull, more delays. Fortunately, the second batch of cells had arrived from Gaithersburg, good till 5:15. The original batch was long past its four-hour life span.

An irony of brain surgery: After four-and-a-half hours, they had barely touched Becca's brain. "We don't want to do much to her brain," Schiff said. The point was to disrupt the brain as little as possible. Stretching across the surgical cavity was a quivering thin red vein. The hardest part of the operation had been the effort to leave that crucial vein alone. Most of what they had taken out was tumor, and tumor, he noted, doesn't think.

Becca is left-handed. Luckily, her capacity to speak and make sense of language -- "the thing that makes us human," Schiff said -- lies in the right brain, away from the tumor.

W

hen the pathology report on the six marginal specimens came back, four were negative -- no evidence of tumor-and two positive. Schiff removed more tissue and sent away two more specimens.

It was time for the gene therapy. The cells were ready, in a test tube. They looked like lemonade.

Schiff sketched a map of Becca's brain incision on the back of a package of rubber gloves. He poured the cells into a cup, called for a syringe and made nine injections, spaced evenly around the well of the surgical cavity. Two teaspoons in all, or about a billion cells. After each injection, he called out the location and the amount so they could be recorded and marked on the makeshift map.

In less than five minutes, the climactic gene therapy part of the operation was over. The surgical team turned to closing up the wound -- stitching up the incisions with a combination of absorbable, nylon and black silk thread -- and bringing Becca back to consciousness. She had been in the operating room for more than eight hours.

The Lillys were in the waiting room when Schiff arrived, still in surgical scrubs. "Things went very well," he told them. In another hour, they could visit her in the intensive care unit.

Under a helmet of gauze, Becca was groggily blinking herself awake, sucking on an ice cube. Her eyes itched and her hands were hot. What she wanted was water.

H

er family is her rock. On the mantelpiece in the living room is a Valentine's Day card from Becca to her mom and dad. "Thank you for everything you've done," she wrote, "like when my cancer came back you were there for me 24 hours a day."

"We live in flexibility," Maureen Lilly said.

Joe Lilly's way of coping is to delve right in and be doing something. He's a lawyer in solo practice, an ex-football coach. An All-Met lineman at Gonzaga High in 1961 and second-team All-American at Holy Cross four years later, he even tried out for the Redskins under Coach Vince Lombardi. Outwardly, he stays calm, even when he has to hold his screaming daughter down while doctors try to find a vein.

"We would never lie to a child."

Maureen Lilly, who runs a small trade association, is less stoic, more communicative, no less involved. Becca's latest operation hit her mom even harder emotionally than earlier ones, said Becca's 18-year-old sister, Anne Marie. "I saw a lot more tears."

It was Joe Lilly who, last November, told Becca that the cancer had come back. He was driving her to Georgetown Hospital on a Tuesday morning. Before he got the words out, she could tell it was bad.

He also mentioned the new gene therapy experiment at Children's. He told her nobody knew whether it would work. She didn't have to do it; she could say no. They would talk about it later. The alternative was a kind of chemotherapy that was also experimental -- or nothing.

"I told him I didn't want to let the tumor grow," Becca recalled. "I want to get rid of it."

W

hen the Lillys discussed the pros and cons of the experimental gene therapy for her brain tumor, Becca was usually in the room. She's 15, after all, and her life is at stake. She signed the daunting 10-page consent form that warned, among other things, that the treatment could have "unknown and possibly disabling effects or death."

"We would never lie to a child," neurologist Packer said. "They're not stupid. They know. Most of the time, children don't ask many questions. They may ask, `Could I die from this?' The answer is: Yes, to be honest, you could die from this, but we're going to do everything we can to try not to let that happen." It's also important for children to know that they are in no immediate danger, he said. "It won't happen overnight."

The day after her nine-hour brain surgery, Becca was out of the ICU, alert, walking to the bathroom on her own. She even ate part of a hamburger and some chocolate milkshake smuggled in from McDonald's.

But that night turned hellish. About 3 a.m., her mother, sleeping on the sofa bed in Becca's room, awoke to a crash. It was Becca's head hitting the floor. Apparently in the midst of either a nightmare or a seizure, Becca had moved to the foot of her bed, gone over the railing and fallen on her face, splitting her upper lip and chipping a tooth.

Dr. Roger Packer checks in on Rebecca the morning she is to go home.
James A. Parcell--The Washington Post

Packer can't say for sure what triggered it. The most likely explanation is a seizure, an electrical short-circuit in the brain. But a seizure could have many causes: inflammation from the surgery, the tumor itself, a bad reaction to medication or the gene therapy injections.

T

he next two days were miserable: a blur of blood draws and brain tests. The doctors had to unwrap the bandages on her head and attach brain sensors to the tender skin. She had three stitches in her lip. They kept adjusting her medications. Sometimes she became disoriented or sick to her stomach, or both. She saw double. She was exhausted, cranky, scared. She wanted out.

Miraculously, her nosedive seemed not to have damaged her incision. After a day of mostly sleep, she began to feel better. She asked for potato chips, a good sign. A test showed that earlier worries about bleeding in her brain were unfounded. "Thank God, a victory," said a war-weary Maureen Lilly.

"It's hard to think long-term," she said. Each day was a succession of crises. The doctors always seemed to call for another scan, another needle stick, and who could argue with their medical logic? She found herself nodding yes to test after test, when what she really wanted to say was: Why can't they just leave her alone?

She herself had brought all sorts of time-passers to the hospital: embroidery, a batch of photos to sort, a novel. Useless. She gave up on her novel after finding she had read the same page six times.

Two days later, in a stunning turnaround, they were going home. The doctors knew it was time. For one thing, the tests were coming back normal. For another, Becca was having her hair done. "If they're worrying about how they look," Packer said, "it's usually time to send them home."

H

er mom and Anne Marie had the delicate job of combing out the five-day tangles and aiming the blow-dryer so it wouldn't hit the raw question mark of stitches above her left ear.

Packing up took longer: 13 balloons, a wallful of get-well posters, candy baskets, flowers, a menagerie of stuffed animals and leftover stashes of cookies, Twizzlers, Gummi Bears, peppermint patties, hot chocolate mix.

Becca was upbeat. Clean hair. No double vision as she watched "Mighty Ducks II" on video. She aced all of Packer's neurological tests. When neurosurgeon Schiff came by, Becca gave him a teenage patient's highest accolade: The surgical haircut was a 10.

By noon they were driving up North Capitol in the family van, Becca riding shotgun, her tan velvet hat covering the scar.

"You feel okay?" her mom asked.

"Just tired."

Minutes later, Becca walked into the living room of their Takoma Park home, flopped down on the sofa, closed her eyes and conked out. Her hat was still on. She didn't wake up for three hours.

B

y itself, the gene that had been injected into Becca's brain was powerless against her tumor. But doctors hoped a drug would complete the gene therapy experiment's one-two punch.

Two weeks after her surgery, Becca began intravenous doses of an anti-herpes drug called ganciclovir. She was given the drug not for herpes, but because the gene they had injected into her brain, the thymidine kinase or TK gene, is hypersensitive to it.

A gene is a segment of DNA within a cell. Each gene contains a code instructing the cell to make proteins or other vital substances. The TK gene, for example, tells a cell to make TK, a protein that happens to become highly toxic when it reacts with ganciclovir.

"I felt like I was going in a circle, upside down."

If the gene therapy was working, the virus had infiltrated the remaining tumor cells in Becca's brain, smuggling in its payload of TK genes. By now, they should have sabotaged the tumor cells into producing plenty of TK. It was time to send in the ganciclovir to kill them off.

The first intravenous infusion of ganciclovir took place at Children's. Then, after a training session at home, the twice-a-day treatments became the home team's job.

Joe Lilly took charge of the home infusion routine. He liked setting up the equipment, measuring out the exact doses, keeping track of it all -- the T connector and the K lock, the saline wash and heparin flush. "Medicine is his second calling," Maureen Lilly said. "I'm not a blood person."

E

very morning and evening for two weeks, Becca settled into a rocking chair in the living room, next to a seven-foot IV pole on wheels, with a clear plastic bag of fluid and tubing curling down. Her father worked the air bubbles out of the tube and connected it to the blue plastic clamp on Becca's arm.

The slow-drip infusion began, two drops a second into a special catheter inserted the week before, a spaghetti-thin tube that entered Becca's arm at the bicep and threaded through a vein to just outside her heart. It took less than an hour, and she felt only a slight coolness in the vein.

The infusions seemed almost anticlimactic. They didn't hurt, but neither did they make any difference in how she felt. Was it working? There was no quick way to tell.

One of the many frustrations of treating a child with a brain tumor, Packer said, is that "there's nothing we can check right away. Wait and watch: The longer we go without any problems, the happier we are."

There have been two especially scary moments for Becca since her gene therapy. The first came in late December. Christmas had been wonderfully nonmedical, everyone at home and Becca feeling better than she had in some time. Then the roller coaster dipped again. During a funeral mass for Joe Kozik, the legendary coach and athletic director at Gonzaga, Becca had another spell. "Something went across her brain," her father said. She went wobbly, seeing double, and by the time they got her to the car, she was ghostly pale and spitting up. He drove her straight to the emergency room.

"I felt like I was going in a circle, upside down," Becca said.

B

y evening, she was fine. The scan of her brain was normal. What had happened? Another seizure? Did her anti-seizure medicine get out of whack? A reaction to the gene therapy? Packer was uncertain. "As long as she's feeling better," he said, "that's all we really care about."

It happened again the last Friday in February. In history class, her head started to ache and words on the blackboard swam. Becca wobbled to the nurse's office, and her mom rushed over from work. Becca climbed into the van, and Maureen Lilly started to back out of the parking lot. As soon as the vehicle moved, Becca freaked. Nothing inside or outside would hold still for her, and she was throwing up. She yelled at her mother to stop and wouldn't let her drive an inch.

"Everything is spinning, just like December," Becca screamed. She was terrified.

Maureen Lilly called Joe, and eventually the two of them drove Becca to the clinic. Her temperature was abnormally low, her feet cold, blood pressure unsteady. Doctors put an IV in, to replenish her fluids. Becca fell asleep, and three hours later she was okay.