Maureen Lilly comforts her daughter Becca. James A. Parcell—The Washington Post

E

arly last month, a group of Joe Lilly's Gonzaga High School classmates conspired to send Becca and her family on a trip. They raised money and pooled frequent-flier miles and soon -- with logistical help from Kathleen Bula -- a week-long trip to Florida was in the works.

A limousine whisked the Lillys to Dulles Airport on Memorial Day Sunday. In Orlando, they stayed in a plush lakefront condominium with a balcony and a pool.

In between naps and bouts of headache and nausea, Becca visited Walt Disney World, Sea World and Universal Studios, and sunbathed by the pool. She rode the Big Thunder Mountain Railroad and the Splash Mountain spillway and spun in a Mad Hatter's teacup. She sat through "Earthquake" and "Terminator 2." At Sea World, she enjoyed watching from her safely distant wheelchair as her dad, down front, got soaked with water by Shamu the killer whale.

"It could get a little scary in here," warned Anne Marie as they wheeled Becca into the "Alien Encounter" in Disney's Tomorrowland.

"Are you serious?" Becca asked.

"Yes."

"Cool!" Becca said.

But the week was not all Fantasyland. Becca's symptoms were rapidly overtaking her. For the first time in her life, she spent most of the day in a wheelchair. Otherwise, she walked tentatively as if she were feeling her way in the dark. She tired easily, didn't eat much and threw up sporadically. She had trouble sleeping. Tylenol with codeine helped -- but not always. Consulting with her doctors by long distance, the Lillys boosted her steroid dose to relieve pressure in her brain, but also worried that the drug was making her restless and "nutty" at night.

"What if it isn't the drugs?" Anne Marie worried aloud. "What if it's the tumor?"

Midweek, after a long day at Universal Studios interrupted by a nap in the First Aid station, Maureen Lilly asked Becca if there was any time that day when she had felt okay. Becca said no.

The hardest part was trying to include Becca in the schedule planning, her mother said. "If you ask her what she wants to do, all she keeps saying is, 'I don't know.' And she doesn't know."

Becca's symptoms were rapidly overtaking her. For the first time in her life, she spent most of the day in a wheelchair.

Still, for a week they were a family free of the at-home rat race of school, work and doctor appointments. And they got away just in time. The Disney trip was originally scheduled to begin yesterday. Early last month, Joe Lilly, who has an instinct in such matters, insisted that they move it up three weeks.

L

ess than 24 hours after returning from Florida, a very sick Becca was on her way to Children's Hospital.

She was exhausted and queasy. Her head hurt. She saw double and could barely walk. She was confused and scared.

It took her nearly two minutes to walk about 50 feet from the waiting room to an examining room near Packer's office. She moved gingerly, in shuffling baby steps, with her father holding one arm and her sister the other, while her mother followed with a wastebasket in case Becca threw up. She plopped down in a chair, winded by the short walk, and started to sob.

Packer was shaken. He had never seen her so sick. Putting his hand on her shoulder, he asked a few questions.

"One or two?" he asked, holding up an index finger on her left -- her good side.

"Two," she whimpered.

"How old are you?"

"Sixteen."

"When's your birthday?"

"July 18." She said it slowly, as if figuring it out.

"Where are you?"

"Children's."

"What's my name?"

"Um-um-July 18." She frowned and winced, knowing it was the wrong answer, but remained too flustered to come up with the right one.

They helped her around the corner into Packer's office.

"Where's Mom?" Becca suddenly wanted to know.

Maureen Lilly had stepped into the hallway for a moment, crying. After gathering her composure, she came back in and gave Becca a hug. "I didn't feel good," she whispered to her daughter.

"I don't think it's the medication," Packer announced. "I think it's the problem we've been dealing with all the way through." He ordered an immediate brain scan and told Becca he wanted to keep her in the hospital overnight "to see if there's anything I can do to make you feel better."

"Okay," Becca nodded. She seemed a bit less bewildered, as if a spell had passed.

A

fter her brain scan, Becca was admitted to a room on 4 Green -- familiar territory to her -- and fell asleep. While she slept, Packer led her parents across the hall into a small lounge and closed the door.

"I don't think what I'm going to say will surprise you," he began. The tumor was out of control. On the newest scan it was no longer one large white blob but a series of spots throughout her brain. "Huge lumps," he called them;a dramatic change even since her previous scan 12 days earlier.

Maureen Lilly would later say that the hardest part of the day was not when she heard Packer confirm what she and Joe already had guessed, but earlier -- when she had to watch her distraught daughter struggle with pain.

There was no reason to continue chemotherapy or any other treatment for her cancer. The major goal from now on was simply to keep her as comfortable as possible.

"I can't tell you whether this will take her life in a week or two or a month or two," Packer said. "But usually this kind of spread doesn't give us months."

Joe and Maureen Lilly sat silent on the couch.

"I know you have been honest with her all the way through," he said. "I don't know if you want me to speak to her, or if you want to wait for her to ask questions."

They would have to think about that.

"I don't think she'll ask questions," Maureen Lilly said.

"She's certainly frightened," Joe Lilly said.

They talked about home care and getting hospice involved and how to balance the effects -- and side effects -- of steroids and painkillers.

"It's a terrible set of options, but I think pain is the major thing we want to address," Packer said. "I don't want to take away Rebecca, but I don't want her to be in pain."

"We agree with you there," Joe Lilly said.

Maureen Lilly would say later that the hardest part of that day was not when she heard Packer confirm what she and Joe already had guessed, but earlier -- when she had to watch her distraught daughter struggle with pain, fear and the doctor's simple commands.

A

fter two restless days and nights in the hospital, Becca came home on June 4. The hospital bed was already set up in Anne Marie's old room on the ground floor, which had been transformed into Becca's, with her knickknacks and stuffed animals and new pictures on the walls.

The first thing Becca asked about was the holes in the wall where the pictures had been hastily rearranged. She wondered what would happen when she moved back to her old room upstairs.

Did that mean she didn't know?

Joe Lilly had talked with her that morning about how the tumor had come back and her treatment wasn't working. She also had heard the discussions about pain management.

Becca in bed at her home. Her close friend and school mate, Megan McArdle, reads to her while her dog, Lady, lays at her bedside. James A. Parcell—The Washington Post

Maureen Lilly was starting to hate the phrase "pain management." It was such a medical term, such a euphemism for what no one had told Becca directly. "But how do you talk to someone about the fact that they're dying?" she said.

Her first night home, Becca asked what was going on with her right hand. She had lost feeling in it and could barely raise the arm. Would it get better?

Choosing her words carefully, Maureen Lilly said it might get a little bit better but it probably wouldn't get better -- because the tumor was growing.

It was a perfect opportunity to bring up the larger question.

"She opened the door wide enough so I could have walked through," Maureen Lilly said. "But I couldn't do it."

T

o qualify for hospice care, a patient must have a limited life expectancy, usually six months or less.

Hospice care emphasizes pain control and comfort care -- in the home or a homelike setting, if possible, rather than a hospital. Keeping the patient comfortable takes precedence over prolonging life by all-out medical treatment and machinery such as artificial ventilators.

If there's one misperception that galls those who take care of the dying, it's the one implied in phrases like "no more treatment" or "nothing more to be done." Ask any cancer doctor, any hospice nurse, any social worker, any parent of a dying child. Even when a life can be measured in days or hours, there's plenty to be done.

"We're doing lots," said Barbara Psotka, a hospice social worker with the Jewish Social Service Agency. "It's just different stuff now."

Hospice nurse Sue Eynon-Lark is on call and visits several times a week. But for the time being, Becca's family handles most of her care.

"There are no assigned roles," Maureen Lilly said, but everybody does something." They read to her, hold the cup of chocolate milkshake, change the CDs on her boombox, tell her stories, watch over her sleep. They spend time with her. They don't leave the house for long at a time.

It's a huge comfort to them all that since she began taking morphine, Becca no longer complains of pain -- even headaches.

A purposeful calm has settled over the Lilly household. Relatives and friends continually come by. Food arrives from a network of St. Bernadette's parishioners. There are balloons, and flowers, and sometimes laughter.

B

ut what to tell her? Sitting in the living room one afternoon while Becca slept, her parents talked for nearly two hours with social worker Psotka about a subject still nagging them both.

"What do you want her to know?" Psotka asked.

"I want her to know," Maureen Lilly said, "that we're not pursuing further treatment, that the cancer is spreading and that our major concern is keeping her comfortable and putting it in God's hands."

Yet she didn't want Becca to think of it as "giving up."

Back in the hospital, Joe Lilly holds Becca in his arms. James A. Parcell—The Washington Post

Psotka agreed. "You don't want ever to give her the idea that there's nothing to do," she said. There was always something to do, always something to hope for.

They searched for a gentle way to be honest about all this. If Becca asked them a direct question, Psotka said, they owed her a direct answer. Not brutal, but honest. Otherwise she might begin to worry that there was something else she wasn't being told.

The question Maureen Lilly feared most: Am I gonna die?

The question Joe Lilly feared most: How am I gonna die?

But they didn't expect Becca to ask many questions -- she never had. They were also pretty sure -- though not absolutely certain -- she knew the answer to the first one.

After all, she knew a lot already. She was nearly 17 and had been fighting a terrible disease for six years. She knew how she felt, and knew her right arm and leg were weaker by the day. She knew the tumor was spreading and there was nothing they could do about it. She had friends from Camp Fantastic who did not come back the following summer.

"I think she knows, don't you?" Psotka said.

"I do," Joe Lilly said.

But what if she was confused? Or, as children will, avoiding the subject to protect her parents? Or just plain afraid? They had to find out.

A week ago this morning, Joe and Maureen got up their courage. They walked into Becca's room, with Psotka. And for a few minutes they talked.

They told Becca why she was at home now, in her sister's old room on the ground floor. They told her about hospice care. They told her they would be there for her, always.

"Her eyes were open and she listened the whole time," Maureen Lilly said. "And then she knew what we knew."