T

he Lillys measure out their lives in MRIs.

"Families learn to live from scan to scan," Packer said. "Probably the worst time for them is the 24 hours before any scan."

Every month since her surgery last November, Becca has returned to Children's for a neurological checkup by Packer and another MRI. He puts her through the ritual: "How many fingers? . . . Okay. . . . Now look at my nose, biggest thing in the room. . . . Cover one eye. . . . How many now? . . . Watch my hand. . . . Good. . . . Over here. . . . Close your eyes. . . . Hands out, palms up. . . . Count to five slowly. . . . Fine. . . . Touch your finger to the tip of your nose. . . . Now here. . . . And back. . . . Okay, hop down. . . . Turn around. . . . Feet together, walk. . . .

Becca reads a get-well card from classmates.
James A. Parcell--The Washington Post

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Was it normal post-surgery inflammation, or the tumor growing back?

---

"Fine. Let's get you scanned."

An MRI is a big computerized, doughnut-shaped magnet. It surrounds the patient and uses radio signals to make detailed cross-sectional pictures of soft tissues, like the brain, that on a conventional X-ray would be obscured by bone. It's also a rackety machine the size of a bread truck.

Becca is an old hand at MRI scans. She's had dozens. "I just lie there and think of things I'm going to do," she said. "Sometimes I even fall asleep."

S

he knows the drill. No metal allowed. Earrings come off, earplugs go in ("so I still can't get my ears pierced, which is driving me bonkers"). She lies down under a blanket on the bedtable. The machine goes chug-chug-chug like an old-fashioned washing machine. She slides headfirst backward out of sight into the machine. A rearview mirror allows her to see the technicians monitoring her from the next room. A percussive sound like a bongo drum begins above the chugging, then one like a pneumatic drill breaking up pavement. The time ticks away on the green digital readout above the opening where her feet stick out. Midway, a nurse injects a contrast dye into Becca's bloodstream to highlight any inflammation or bleeding in her brain on the second set of scans.

Inflammation shows up on the black-and-white MRI scan as a dye-enhanced bright spot -- or "enhancement." What the doctors are hoping to see is not a shrinking tumor -- surgery cut out the visible part of the tumor last November -- but an absence of new tumor growth. Inflammation could indicate another relapse.

Becca's December MRI, her first since leaving the hospital after gene therapy, showed some inflammation around the tumor cavity, where the gene-carrying virus had been injected. Was it normal post-surgery inflammation, or the tumor growing back?

T

he January scan looked better. There was no sign of new cancer, and the inflammation around the gene therapy injections had died down, Packer said. Since then, it has neither disappeared nor grown. Her most recent scan, 10 days ago, showed no change from the month before -- and no visible tumor.

A clean MRI scan is temporarily reassuring, but by no means perfect. The smallest tumor an MRI can detect is about the size of the letter "o" in this sentence. It can't pick up microscopic growth, and cancer cells are microscopic.

The Lillys keep copies of all Becca's MRI scans. Each month, Joe Lilly holds the shiny negatives up to the light, trying to compare the latest one with the one before. But the copies are never exactly comparable -- never the identical size or angle. "It drives him crazy," Maureen Lilly said.

"She lives in the present. Everything in the present."

"This tumor is amazing," Joe Lilly mused one day while Becca was inside the MRI machine. An invisible, thoughtless thing -- this cellular terrorist -- had held his daughter and his family hostage for more than four years. It wasn't like on the football field, or in the courtroom.

"It's not as if you can sit down with a tumor and negotiate and say, `Look, you leave Becca alone and we'll leave you alone,'" her father said.

The toughest thing is living in the shadow of a terrible prognosis, said Becca's sister, Anne Marie, who's studying to be a nurse. "You check the MRI and say: So far, so good. You just kind of go along.

"But you're always waiting for something to happen, and hoping it won't."

B

ecca herself doesn't seem to dwell on it. Sometimes she'll mention the unfairness -- her word -- of a relapse. Her parents can tell when she is scared. Her eyes dart back and forth, and she gets even quieter.

On her second day back at school last January, Becca came down with what turned out to be flu. When a child has cancer, any symptom packs extra throw-weight. Maureen Lilly could tell Becca was scared. She was scared herself. "You're always suspicious for cancer," she said.

When doctors inserted the infusion catheter into her arm, they saw it as fairly routine, especially compared with nine-hour brain surgery. Not to Becca. It meant more needle sticks. To a child with small veins, every white-coated person in the hospital is a potential needle coming at her.

But usually, Becca's attitude is "just truck on through," her sister said. When she gets an MRI, she leaves it to her parents to discuss the results with the doctor. "It's her defense mechanism," said Anne Marie.

"You're not sure what's going to happen," Becca said. "You just go on with your life until it happens and try to have a good life. You don't know how long you're going to live. I could, like, die tomorrow, and I'd be in the worst mood. What good would that do?"

S

he thinks it's "pretty funky" that her birthday is in July, making Cancer her astrological sign. At 15, her parents say, she has little sense of the big picture, the long term. Yet what's bigger than living with brain cancer?

"She lives in the present," her dad said. "Everything in the present."

Hair is a big deal with Becca -- she's a teenager. It was also the most obvious sign of her illness -- falling out after radiation or getting shaved for surgery. In 1991, after her first radiation, Becca picked out a long, expensive wig that was too blond, impossible to brush and sweltering in midsummer. She can joke about it now.

School isn't easy for Becca. She has dyslexia. Her IQ dropped more than 20 points between 1991 and last year, an effect of the radiation treatments. She suffers occasional memory lapses. Sometimes she has to fish mentally for a common everyday name, or mixes up related words, switching yesterday and tomorrow, or days of the week.

The first thing Rebecca did when she arrived
home was crash on the sofa. Her mom
is seated beside her.
James A. Parcell--The Washington Post

Most weeks, she misses at least a day of school. Spells of wooziness often come over her early in the morning. "Sometimes I feel like I'm going to fall over when I walk," she said.

Y

et she's not restricted much by doctor's orders. She went sledding after the Blizzard of '96. She went skiing in West Virginia with a group of cancer patients and -- wearing her shiny white helmet -- "fell a ton of times."

She also played CYO basketball, for St. Bernadette's in the Senior Girls league. At the first practice in January, she was too tired to do more than watch. A month later, she was in the middle of the action. "I put my hair up in a ponytail, and you could see my scar, but I didn't really care," Becca said after her first game.

"She's very independent," coach Mike McGinn said. "She hasn't asked for anything special, and I've never heard her complain."

This summer Becca plans to revisit Camp Fantastic in Front Royal, Va., a week-long camp for kids with cancer run by a group called Special Love -- her fourth season. "Her buddies from there," Anne Marie said, "are her buddies for life."

Could it work?

"I've been doing this too long to call victory early," neurologist Packer said. If Becca's tumor is going to come back, he said last November, the chances are that it will happen within 18 months. The likelihood of a recurrence would decline more sharply after that. Another 18 months -- three years in all -- and Packer would be "very optimistic it will never grow back."

V

e quickly added, "That's a lot of scans from now."

Two weeks after Becca's surgery, a panel of 14 scientists reported to the National Institutes of Health their appraisal of the state of gene therapy. Despite its extraordinary potential, the panel said, gene therapy faces major obstacles and unknowns. Its current usefulness to patients has been oversold by scientists and the news media, they concluded. "While the expectations and promise of gene therapy are great, clinical efficacy has not been definitely established at this time in any gene therapy protocol."

Packer knows as well as anyone that gene therapy is experimental and unproven. "We are in uncharted waters and we have to move carefully," he said. He knows that the first try at treating brain tumors with gene therapy is unlikely to work spectacularly and may not work at all.

"No matter what I tell them, I think they're hoping their child will be the first to be cured by this treatment."

He also knows that he has patients dying of brain tumors that he has no treatment for.

It's easy to be "objective" about experimental cancer treatments "when you don't have to sit across the table from parents and tell them you have nothing to offer their child," Packer said.

In broaching the possibility of gene therapy with parents, he must admit how much remains unknown. "I can't tell them gene therapy is a cure," Packer said. "I can tell them it is relatively safe and reasonable and has a chance of working. No matter what I tell them, I think they're hoping their child will be the first to be cured by this treatment."

All their natural questions -- Will it work? How will my child fare? -- can only be addressed with hopeful uncertainty and candor. "At this level of testing," Packer said, "you never know the answers to those questions."

B

ecca has a book called "An Alphabet About Kids With Cancer," by a group called The Children's Legacy in Denver. It's filled with photographs of patients, doctors and famous people who had cancer, like Babe Ruth. Each letter gets a page of pictures and a page of thoughts: A is for Aches, B is for Body, C is for Cancer, etc. In the back are 26 blank pages for kids to turn into their own cancer alphabet. Last year, Becca started filling in those blank pages, A through Z.

In Becca's version, A is for Anger -- "when you have a relapse, when your doctor tells you cancer has come back, when you don't know what's going on, when you are mad because you have to have another operation."

M is for MRIs.

R is for Relapse.

W is for Worrys and Wishes. She knows each worry is the flip side of a wish. She worries that "when I get married and have children I won't be able to read to them" -- because of her dyslexia. She wishes her cancer would "go away for good" and "not come back a 3rd time (but it did)."

Y is for Yo-yo. Below the word she has drawn a yellow yo-yo on a string. It's labeled "my life."