Rebecca Lilly
James A. Parcell—The Washington Post

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The tumor had grown much bigger and "sort of burst through."

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Rebecca Lilly 'In God's Hands'

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s soon as she saw the doctor's face, Rebecca Lilly knew he had bad news about her brain scan.

"He was, like, puzzled," Becca said afterward, wrinkling her nose and frowning. She was sitting with her mother, Maureen Lilly, in the cafeteria at Children's National Medical Center in mid-April. They picked a table by the window.

They had just met with neurologist Roger Packer, who directs the brain tumor program at Children's, to go over Becca's latest brain scan.

The tumor had grown much bigger and "sort of burst through," Packer told Becca and her parents. It filled the cavity left by her previous surgeries, its sheer bulk beginning to press against the brain and shove it out of position.

On the brain scan lit up on the wall the tumor appeared as a white blob above her left ear.

Because most of the growth still seemed confined to one spot, Packer broached the possibility of another surgery to "debulk" the tumor and relieve pressure on the brain. Surgeons couldn't get it all -- the tumor's "fingers" reaching into her brain were impossible to remove -- but cutting out the major mass might allow one more chance at treating the rest with chemotherapy.

Perched on the examining table, Becca started to sniffle. "Will I have to lose my hair again?"

That would be up to the surgeon, Packer said, handing her a tissue. Maureen Lilly moved next to Becca and put an arm around her. Becca held the tissue between her hands in her lap and quietly sobbed.

"There is also the option, which we've talked about before, to say enough is enough," Packer told the Lillys. But with Becca still free of brain cancer's worst symptoms, he believed he owed her one more shot at prolonging her life.

In the cafeteria, Becca didn't say much. She sipped a Pepsi and nibbled an oatmeal-raisin cookie. Her mom tried to cheer her up by mentioning the new summer haircut they planned.

"I won't be able to play softball," Becca said after a long pause.

"I don't know," Maureen Lilly answered.

"That sucks," Becca said.

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or 16-year-old Becca Lilly and her family, this spring has been a season of transition and harrowing medical decisions.

In her six-year battle against a brain tumor, Becca has undergone every major form of cancer treatment -- five brain surgeries, two kinds of radiation and four combinations of chemotherapy. In November 1995, during a nine-hour operation at Children's Hospital, she became the first child with a brain tumor ever treated with gene therapy.

Maureen talks to Dr. Revici about Becca. James A. Parcell—The Washington Post

Those treatments held the cancer in check for a time, but could not keep it from coming back. Becca's doctors always warned that when a malignant brain tumor grows back, it can do so with terrifying speed.

The Lilly family has witnessed firsthand what they meant.

Three weeks ago today, Becca was in the Magic Kingdom at Walt Disney World in Florida, having breakfast with Minnie Mouse, Pluto, Alice in Wonderland and Snow White. Now she spends most of the day in a hospital bed in her sister's old room on the ground floor of their Takoma Park home.

Becca's family decided this month to forgo further medical treatment against her rampant tumor and to concentrate every effort on keeping her at home and free of pain in the time that remains. She has entered the home hospice program of the Jewish Social Service Agency of Metropolitan Washington.

Caring for someone with relapsing brain cancer is "a series of transitions, and this is the worst one," said neurologist Packer.

She uses no intravenous lines, no catheters, no feeding tube. What little she eats and drinks, she takes by mouth. To dull the pain, she takes 12-hour morphine pills, supplemented as needed by a squirt of liquid morphine under her tongue.

A shelf above the foot of her bed holds a throng of stuffed animals. Stuck in the mirror is a snapshot of Becca kicking a soccer ball in fifth grade, the year her tumor was diagnosed.

Becca's father, Joe Lilly, sleeps on the floor beside her bed, in case she needs help in the night and because it comforts her to hold his hand while she is falling asleep.

"Joe's the night person, I'm the day person," said Maureen Lilly.

"It's very rough," said neurologist Packer, who has treated Becca for more than five years. Caring for someone with relapsing brain cancer is "a series of transitions, and this is the worst one."

Becca's memory plays more tricks than ever on her. She is rapidly losing strength on her right side -- what her dad calls "having to tell her right arm and leg what to do." Even sitting up to take a pill tuckers her out. Her peripheral vision on the right is gone.

But she still has her hair, and her trademark spunk.

Early this month, she attended her sister Sarah's graduation from kindergarten at St. Bernadette School in Silver Spring, sitting down front in her wheelchair. She made it to the eighth-grade graduation party for her brother, Joe. She watched Game 4 of the National Basketball Association finals, cheering the Utah Jazz's come-from-behind victory over the Chicago Bulls from her wheelchair in the living room. A week ago last Friday, she struggled to meet friends and classmates at Good Counsel High School in Wheaton for a few minutes in the cafeteria on the final day of class.

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ven before the mid-April scan confirmed it, there were signs of trouble. The previous week, Becca missed school each day. She required at least two naps a day, and had headaches and nausea when she was awake. Riding with her father one evening to get ice cream, she had a brief seizure in the front seat of the car.

Word-finding became more difficult. She could remember song lyrics and come up with the right word if the doctor pointed to a ring or a watch or a dime. But she had trouble completing her own thoughts.

"If, like, I'm trying to say something," she explained, "I, um, can't."

The day after the bad-news brain scan, Philip Cogen, chairman of pediatric neurosurgery at Children's, advised the Lillys that if they chose surgery, it could not wait. The tumor had doubled in size in the past month. He scheduled an operation the following morning.

"Tomorrow?" Becca looked stunned.

Becca plays cards with her sister Ann Marie, before going in for her last surgery. James A. Parcell—The Washington Post

"What about my kids?" She meant the class of 4-year-olds at St. Andrew's School in Wheaton she visited three mornings a week when she was feeling up to it. "And my friends, like Megan."

She sat back in her chair, left hand at her mouth, eyes down.

"We'll figure something out, Becca," her mother said.

Cogen went over the details of the surgery and -- picking up on his patient's concern -- assured Becca he would brush as much hair as possible out of the way before he shaved her head for the operation.

Minutes later, Becca was at a hallway pay phone. With her mother's help, she made three calls. First, she left a message on her older sister Anne Marie's answering machine: "Hi, Anne. I'm having surgery tomorrow. See ya. Bye." Megan McArdle was at softball practice, but another Good Counsel classmate, Karen Gangloff, was home, and they quickly came up with a plan. "You're a saint. Bye," Becca signed off.

Her whole spirit lifted. She and Megan and Karen were going out to dinner by themselves at Copeland's -- their own booth -- at 7 p.m.

Surgery this time took about four hours. Neurosurgeon Cogen removed what he could -- chunks of mooshy white growth.

"We ordered seafood, the biggest plates I've ever seen," Megan said later. "She was really talkative. You couldn't tell anything. She was laughing, joking and making fun of people."

Megan asked if Becca wanted her to tell their classmates. No, Becca said adamantly -- she'd tell them when she got back.

Close as they are, Megan recalled, Becca has never let on how scared she is. She always puts up a positive front.

"It's not fair," Megan said. "She should be playing soccer with me like she used to. She should be driving! Her biggest problem should be homework! "It makes me so mad."

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urgery this time took about four hours. Neurosurgeon Cogen removed what he could -- chunks of mooshy white growth. "Like oatmeal," he said. In all, what came out was the size of an egg.

Becca sleeps after her last operation, her sister Anne Marie at her side. James A. Parcell—The Washington Post

The pathology report confirmed that the tumor, a glioblastoma, had turned even more malignant. Some of the tumor cells themselves were deadóa paradoxically bad sign. The cancer was growing so fast that it had outstripped its own blood supply.

It was no surprise that the tumor grew more aggressive, Cogen said. "Every time you hit her with [a new treatment], it kills the most vulnerable cells, and you end up with the most resistant cells." Surgery can never remove them all, without sacrificing the normal brain.

"Malignant brain tumors," he said with disgust, "always grow back."

In the intensive care unit after surgery, Becca woke up groggy amid a tangle of tubes, under an oxygen mask and a helmet of bandage. Her eyes half-opened when her parents spoke her name.

"They left most of your hair, kiddo," Joe Lilly said.

"Becca, your hair looks beautiful," said Maureen Lilly, stroking her right hand. "It's in a ponytail."

The next day she was out of the ICU, but still confused, speechless and weak. Becca is normally a champion pill-taker; any size, any shape, any hour; but her tongue was swollen and numb, which made swallowing difficult. That annoyed her.

"What's wrong, Becca?" whispered Anne Marie Lilly, who is training to be a nurse. "Is it the tongue thing, with the pills?"

Becca didn't move or speak, but looked upset.

"It's okay, Becca. It's because you just had surgery. It'll be better tomorrow. Not a problem, okay? Just temporary. Just rest, okay? Rest."

Without a word, Becca closed her eyes and slowly reached up and back with her left hand to the top of the pillow and felt around. Her hair was still there.