Rebecca's parents visit her in the intensive care unit immediately after her five-hour surgery.
James A. Parcell--The Washington Post

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Becca's safety net is sturdy and vast. It begins with her parents and her three siblings: Anne Marie, 19; Joe Jr., 13; and Sarah, 4.

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I

t was two days before she ate anything but ice chips. By then she could walk, with assistance, to the bathroom. But she was still groggy and had trouble concentrating or having a conversation.

In the early going, something seemed disconnected. When they went over the menu, she didn't remember what macaroni and cheese was. She had difficulty following all but the simplest sentences. She fished for common words and couldn't always come up with her sister's name.

"You'd give her a cup in one hand and a pill in the other, and she'd try to drink the pill," Maureen Lilly said.

If anyone knew what Becca was going through, it was Colleen McGowan. She and Becca became friends four years ago through Camp Fantastic, a summer camp in Front Royal, Va., for kids with cancer. Colleen, 16, of Falls Church, was diagnosed with a brain tumor 10 years ago. She has been through two surgeries, radiation, chemotherapy -- and two relapses.

C

olleen was the first person outside Becca's family to visit her in the ICU. "I was talking to her, but she wasn't really talking to me," Colleen said. "She was real groggy and pale. Her freckles really stood out."

Becca and Colleen talk to each other about things they don't tell other people, their parents say.

"Becca's my buddy," Colleen said. "She helped me so much. She was always the strong one of us. She helped me up the hill and down the hill when I had trouble walking." Colleen had lost some peripheral vision and strength on her left side and had to walk with a cane when Becca first knew her.

The weekend before Becca's recent surgery, Colleen and Becca had hung out together at Pentagon City Mall. They talked about Becca's surgery and what it might do to her.

"I told her, `Whatever it takes, I'll be there for you,' " Colleen said. "That's what Becca was for me. She's always just right there."

Becca's safety net is sturdy and vast. It begins with her parents and her three siblings: Anne Marie, 19; Joe Jr., 13; and Sarah, 4. But how many kids have 54 cousins? Not to mention a bazillion stuffed bears -- plus schoolmates, teammates, neighbors, her parish. The morning of her surgery, friends organized a special 8 a.m. Mass at St. Bernadette's; nearly 200 people came.

The walls in Becca's hospital room turned into bulletin boards of well-wishing. She was adopted by, among others, the fourth grade at St. Bernadette's, where Joe goes to school. Kids find words for what adults have trouble saying:

Rebecca and her 4-year-old sister, Sarah.
James A. Parcell--The Washington Post

"Dear Rebeka," wrote fourth-grader Michael Spiegelberg on his handmade card. "I am very worried about you, Rebeka. Please get well. . . . I would hate to loose you. I pray very hard for you every night, it is hard but I still do it, even if it is very late. I went to church on Monday only for you not for everybody else because I'm very worried. I really hope you feel beter. Keep cool, get well, and be very careful!!!"

"Becca, are you okay?" whispered her older sister, Anne Marie, bent down over her, their faces inches apart. It was the second day after her surgery. "Is something bothering you? Becca, what's bothering you?"

Becca looked puzzled, scared. Her eyelids were fluttering, and her lips quavered as if she knew what to say but couldn't shape the words.

"You thirsty?" Anne Marie asked.

Becca nodded under her helmet of gauze, eyes closed.

"Ice chips or water?"

Becca's mouth soundlessly shaped the word "chips."

Anne Marie fed her a chip of ice from the plastic cup.

"Good job."

A

nne Marie, who's studying to be a nurse, often stayed in the hospital with Becca during the day, sparing her parents, who took turns staying overnight. She was there during some of the roughest times. Once, she had to hold down the screaming Becca while they added four stitches to repair a leak in her incision. Hospital staffers quipped that they might as well just give her an honorary nursing degree.

The scariest crisis came later that afternoon. Becca seemed more cut off than ever. She started drooling, her eyes and mouth twitching, tongue askew. Anne Marie summoned help, and Becca's room became a flurry of urgency. Maureen Lilly rushed to the hospital from work, and Joe Lilly gathered the other children. She seemed to be losing ground.

It turned out that Becca was having seizures, electrical storms in her brain, probably triggered by inflammation from the surgery. She couldn't speak up to tell anyone. Neurologist Joan Conry boosted her dose of intravenous Dilantin, and by late afternoon, Becca looked more like Becca, her face less puffy and more expressive. Even to see her wince and complain when they took the brain wave electrodes off her surgical scar was a relief to her family: the real Becca responding.

They worked out a signal for her to use if she felt a seizure coming on but couldn't get the words out. She would brush her fingers back and forth across her attendant's hand.

In the next few days, with the seizures under control, Becca began to express herself more. "She has answers now," Maureen Lilly said. "They're just not always the right answers."

Packer would show her a quarter, and she'd say "penny." She forgot the word "thumb." He asked her to say, "no ifs ands or buts." It came out garbled.

She still had no stamina. "As soon as she does anything at all," her mom said, "she's pooped. And there were times when her usual "truck on through" spirit flagged. "I don't feel good," she said one afternoon. She was sitting up in bed, clutching a green stuffed frog.

"What doesn't feel good, Becca?" Maureen Lilly asked.

"My self," she said.

B

y last Monday, Becca was well enough for Packer and her parents to raise an enormous question. In a deserted playroom down the hall, the three of them sat in shin-high chairs around a knee-high table between the Barney Baby Bop poster and the fish tank.

Packer began by saying he expected Becca to go home soon. "A bigger issue," he said, "is what are we gonna do from here on in."

There were options but not many, he said. The main one was chemotherapy. Becca had never had conventional chemo, because its results in tumors like hers were not good -- either because brain tumors aren't sensitive to such drugs or because the drugs could not get across the blood-brain barrier, the remarkable ability of blood vessels to keep toxic chemicals from leaking out of the bloodstream into the brain.

"We're getting to a different level now, where no matter what I do, I'm going to kill some normal cells along the way."

But some still-experimental drugs that had shown promise in adults were about to be tried on children like Becca who had run out of proven choices. These were long shots. But if chemo helped shrink her tumor, that might buy more time and allow for the possibility of higher-dose chemo later.

Or they could forgo aggressive treatment for the time being -- something that Packer said he didn't believe "either you or I would recommend now."

The new chemo combination that looked most promising to him combined a proven anti-cancer drug, carboplatin, with a newer agent, called RMP-7, that boosts its ability to get across the blood-brain barrier into the tumor.

"It's still very preliminary," he told them. But in more than 400 adults, it had shown some ability to shrink tumors, with relatively few serious side effects. In his view it was "a very reasonable thing to try for Rebecca" and "our best option."

I

f the Lillys agreed, Becca could start in two or three weeks. She would get an intravenous dose of RMP-7 first, followed minutes later by the carboplatin. After four weeks, another series. Then they'd see if it was having any good effect.

If it worked superbly -- Packer cautioned that this was a huge "if" -- they might consider the possibility of an eventual bone marrow transplant. Such a transplant might enable doctors to give Becca an extraordinarily high dose of chemotherapy, a dose that otherwise would devastate her immune system. That would make sense only if they could shrink her tumor down to microscopic size -- and prove that her tumor would respond to high-dose chemo. "So I've got two hurdles," he said.

It was time for the Lillys to ask questions. They had done their homework. Maureen Lilly had spent hours logged on to a World Wide Web site on brain tumors, in touch with hundreds of researchers, patients and parents around the world. Joe Lilly seemingly had seen every media report of experimental brain cancer treatments, even those in animals -- though as he once noted wrily, "Rats don't have to sign consent forms."

Did the gene therapy do any good? the Lillys wanted to know.

Almost overnight, she seemed connected again -- eating better, talking better, feeling better.

"Except that she got six good months out of it, I don't know," Packer said. Would she have gotten those six good months from surgery alone, without gene therapy? He doesn't think so. "I think there was something there. But we can't say for sure."

What they all do know is that it didn't work well enough to keep Becca's tumor from coming back.

B

ecca's latest surgery, Packer said, had bought some time. But they couldn't wait long to start the next step. When brain tumors grow back, they tend to get more and more malignant and sometimes grow terrifyingly fast. "What I'm worried about," he said, "is that we could be getting to a point where it takes off and we have less time to [plan] than before."

In her five years of treatment, Becca has bounced back fairly quickly from every treatment: surgery, radiation, gene therapy. "We're getting to a different level now," Packer said, "where no matter what I do, I'm going to kill some normal cells along the way."

Joe Lilly, ever his daughter's advocate, asked the final question: "This is a lose-your-hair one?"

Yes, Packer said. But a decision about chemo could come later. They stood up and walked back to Becca's room, where she was sound asleep.

Becca came home last Thursday.

The night before, the whole family gathered at the hospital. The mood in Room 4116 Green had lifted again. The seizures and short-circuits in her brain had abated. Almost overnight, she seemed connected again -- eating better, talking better, feeling better. They could look ahead once more. Becca was cutting up. She was going home.

Becca strolled down the corridor with her sister Anne Marie, weaving a bit, as her parents watched from behind. They saw her lean to the left and brush the wall, then veer back to her right and bump Anne Marie. How much was loss of peripheral vision and how much was just getting her sea legs back they couldn't tell. After a harrowing eight days, it was a relief to see her walking at all.

"You gotta remember," Joe Lilly said to Maureen, "that it's sort of like she's learning everything all over again."