Rebecca Lilly hugs her younger sister, Sarah, last year.
James A. Parcell--The Washington Post

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"I know what people mean when they talk about physically missing someone," Maureen Lilly said. "This hurts."

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Teen Dies of Cancer

Rebecca Erin Lilly, the Takoma Park teenager whose battle against brain cancer has been chronicled in The Washington Post's Health section, died peacefully at home early yesterday. She was less than four weeks from her 17th birthday.

Becca Lilly died with her family at the bedside: her parents, Joe and Maureen Lilly, and siblings Anne Marie, 20, and Joe Jr., 14. Her 5-year-old sister, Sarah, was asleep. The family woke her and later brought her into the room to say goodbye.

After Becca's fitful breathing stopped about 2:30 a.m., the Lillys stayed with her awhile and held her hands and quietly cried. Then Joe Jr. went to find candles, and the priest was called.

Becca's six-year fight against a malignant brain tumor exemplifies the promise and limits of state-of-the-art medicine.

Rebecca's family gathered around her bed to say the rosary. Left to right: younger brother, Joe; mother, Maureen; Becca in bed; older sister, Anne Marie; and father, Joe. Kneeling on the floor is her younger sister, Sarah.
James A. Parcell--The Washington Post

She underwent 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 to undergo gene therapy for a brain tumor.

All the medical firepower doctors could bring against Becca's tumor was not enough to save her life. Early this month, when her symptoms overwhelmed her and a brain scan showed the tumor growing out of control, Becca's family decided to forgo further medical treatment and concentrate all effort on keeping her at home and free of pain.

Tuesday evening, hospice nurse Sue Eynon Lark spoke to the Lillys in a little room off the kitchen and told them Becca probably would not make it until morning. Her blood pressure was falling, and her heart was racing in an effort to compensate. Her pulse was between 190 and 200 beats a minute, almost too fast to c ount. Her right lung had filled with fluid, and her breathing became more rapid and more shallow.

Becca was wearing her pink Cape May whale watch T-shirt, slit down the back like a hospital gown. A toy moose and a box of tissues lay on the pillow. The walls of the room were crowded with balloons.

Becca appeared "very comfortable," the nurse said, but she raised the morphine level another notch to try to keep the lungs and heart from fighting quite so hard.

It was difficult to tell anymore how conscious Becca was. Her eyes were half-open and unfocused, and she no longer moved except to breathe.

"What Rebecca showed us is that you can't measure our lives in terms of the number of years we live," said pediatrician Martin Lustick.

Earlier in the day, Joe and Maureen Lilly had bent close over her, one on each side of the bed. Joe Lilly spoke slow and loud to her, almost directly into her right ear.

"Becca, if you can see Mom, blink your eyes."

Nothing.

"Becca, do you want people to come see you? If you do, blink."

She blinked.

"Good girl, Bec," said her mom.

"I know it's scary when you can't see things," Joe Lilly continued, "but we'll talk to you and tell you who's here. Okay, kiddo? You'll be okay. Just relax.

"When you get to Heaven, all that changes."

Around midnight, with Becca still holding on, the rest of the family tried to sleep: Joe and Maureen Lilly on a futon next to Becca's bed, Joe Jr. in a sleeping bag on the living room floor, Anne Marie and Sarah upstairs. Meanwhile, Becca's aunt Bonnie Logan and a friend kept watch over Becca, under orders to wake everyone if the gaps in her breathing widened.

Coming Home
"What Rebecca showed us is that you can't measure our lives in terms of the number of years we live," said Martin Lustick, a pediatrician with Kaiser Permanente, the Lillys' health plan. "To see a 16-year-old confront the ultimate with such amazing grace makes you realize that it's completely unrelated to how long people live."

"You gain from just being around someone like Rebecca," said neurologist Roger J. Packer, who directs the brain tumor program at Children's Hospital and treated her for more than five years. "She and her family help you understand how important life is and what true quality of life means."

Packer praised the Lilly family's courage in trying new treatments as long as they offered hope—and in ultimately pulling back from all-out medical treatment "to avoid needlessly hurting her."

Less than four weeks ago, Becca was at Walt Disney World in Florida, where she toured the Magic Kingdom and rode such attractions as the Splash Mountain spillway. But by the time the Lillys returned from Florida, she was falling sick with severe headaches, nausea, double vision and weakness on her right side. Her doctors said the tumor had progressed beyond their ability to treat it.

After a brief hospitalization, Becca went home. She spent her last days in a hospital bed in her sister's old room on the ground floor of the Lillys' home, surrounded by balloons, flowers and her vast collection of stuffed animals. Her family handled most of her care, with help from the home hospice program of the Jewish Social Service Agency of Metropolitan Washington.

Father's Day afternoon, Joe Lilly lifted his daughter out of bed and carried her into the living room, where she sat leaning back on the sofa for a couple of hours, as family and friends looked at snapshots of the recent Disney World trip. But in the last week, she did not leave her room.

Two nights before Becca died, hospice social worker Barbara Psotka asked 5-year-old Sarah what she would tell other children going through a similar experience.

"If somebody's sick," Sarah replied, "you should let your mom and dad be by theirselves so they can work with the kid who is sick, like my sister, Becca, who has cancer. She is probably going to die. If your sister is sick, you should leave them alone; they might be tired. Also, if someone is sick you should tell them you love them because it makes them happy and feel better. And if they die, you might never see them again. Kids can kiss their sister and try to make them smile. When Becca's sick lots of people come to see her because they want to say hello and they want to say goodbye."

Joe Lilly holds his daughter's hand as he sits by her bedside.
James A. Parcell--The Washington Post

Although Becca drifted in and out of wakefulness during the last week, she occasionally surprised visitors, letting them know she was listening by a nod, a smile, a wave of her left hand or a characteristic wince at one of her father's jokes. When she could no longer swallow pills, a battery-powered pump dripped painkilling morphine continuously into her bloodstream through a catheter. The dose could be momentarily boosted by the press of a button if she seemed distressed.

Gradually, she became less alert and her breathing more labored. She didn't eat or drink. She began to go into heart failure. Still, she hung on for a few more days. Over the weekend, she dozed but would not sleep.

"We don't know," Maureen Lilly said. "Maybe the tumor. Maybe drugs. Maybe she just doesn't want to close her eyes."

'A Quiet Strength'
Becca's tumor, a malignant glioblastoma, was diagnosed six years ago this month, when she was finishing fifth grade. In both children and adults, glioblastomas are the most aggressive of brain tumors. Of children diagnosed with a glioblastoma, only one in five is alive three years later.

Despite her disease and its dire prognosis, Becca kept up a teenager's pace.

"Becca never let her illness -- or our treatments -- slow her down," said Peter C. Adamson, a pediatric oncologist at the National Cancer Institute. "She could be very sick one moment and a couple of days later be back getting on with her life. I don't know many adults -- I'll include myself -- who could do that."