Rebecca Lilly
James A. Parcell--The Washington Post

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Rebecca Lilly and her family face the disappointing news that her pioneering gene therapy experiment failed and the cancer is returning

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Rebecca Lilly Faces More Treatment

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hen centerfielder Rebecca Lilly came up to bat on a softball-perfect evening last month, her team needed a rally-starter. Third inning, no score, no one on. Becca swung at the first pitch and thunked a slow roller to third, then flew down the first base line in time to beat the throw.

"Hey, girls!" coach Tom Mayers shouted to his team. "That's how you run."

Moments later Becca scored the go-ahead run. In all, she made three hits, scored two runs and pitched in relief as the Spandits evened their Montgomery County league record with a 10-5 victory.

"Becca's got a heart as big as this ballfield," coach Mayers said after the game. "She's gutsy, she never complains, she never gives up. She keeps us all in the game."

What Mayers didn't know is that almost exactly 24 hours earlier, his centerfielder had learned some frightening news about the five-year-old tumor in her brain.

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ifteen-year-old Becca Lilly of Takoma Park, a 10th grader at Good Counsel High School, has lived with brain cancer since she was 10. Last November, she became the first child ever treated with gene therapy for a brain tumor. In a nine-hour operation at Children's National Medical Center, surgeons removed her tumor and then injected into her brain a harmless virus carrying a gene designed to trick any remaining tumor cells into cooperating in their own demise. The experimental therapy was tried on her because standard anti-cancer treatments had not been able to keep the deadly tumor from growing back.

Becca recovered quickly from that pioneering gene therapy. After a few dizzy spells last winter, she was back in school, active and free of symptoms beyond nagging fatigue, headaches and slips of memory. Doctors kept her on anti-seizure medicine and monitored her with periodic brain scans.

Three weeks ago today, Becca had another checkup. Roger J. Packer, chairman of neurology and director of the brain tumor program at Children's, first put her through a routine of tests to check her balance, reactions and hand-to-eye coordination. She aced them all.

"You look as good as I've seen you," Packer said.

Rebecca playing softball.
James A. Parcell--The Washington Post

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he had put on five pounds and was looking forward to summer: a family wedding in Maine, camp in the Shenandoahs and -- there were family jokes about this -- getting behind the wheel to start going for her driver's license.

After the umpteenth blood draw, it was time for a magnetic resonance imaging scan, or MRI. She lay strapped-in on a bed table that slid headfirst inside the huge doughnut-shaped magnet. For nearly an hour, the rackety machine used radio signals and a computer to make detailed cross-sectional pictures of her brain.

When it was over, Becca changed back into her T-shirt and shorts and waited in an examining room. In a nearby office, Packer and radiologist Gilbert Vezina were going over the glossy scans.

Already, another patient was in the MRI room, a 12-year-old girl having her first scan after an epileptic seizure. A little boy sat outside, staring wide-eyed through glass at the huge machine into which his sister had just disappeared.

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ecca walked over to talk with the boy and reassure him it wouldn't hurt. "I remember the first time I had an MRI," she said. "I was so scared. It was so weird!"

A technician handed Becca a grape popsicle.

Then neurologist Packer walked in with her dad. She knew right away.

"The area doesn't look quite as good as last time," Packer said, referring to the part of her brain where they had injected the gene therapy cells. "There's more dye being taken up."

"What does that mean?" Becca asked.

Packer explained that a dye injected into her bloodstream "enhances" or lights up an MRI scan wherever there's extra blood flow. Enhancement on the scan is a sign of inflammation -- and possible tumor growth.

"I don't know for sure if it means there's inflammation from the gene therapy injections, or tumor growth. It could mean that the tumor is coming back," Packer said.

Whatever effect the gene therapy had had -- and it was impossible to measure at this point -- it had not worked a miracle for Becca.

It's doubtful she heard much of what he said after that.

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he tumor coming back. Six months after gene therapy, she was hearing the news any family facing cancer dreads.

Becca sat on the examining table, her legs dangling off the edge. Packer was seated in a rocking chair in front of her, leaning forward and looking up directly at her as he spoke. He said he would talk with her parents and the other doctors in the coming days and they would decide what to do next. The only way to know for sure if the bright spot on the MRI was tumor would be to take a biopsy, a tissue sample that could be tested in a lab. But that would require another operation on her brain.

Packer was on a verbal tightrope. Becca's tumor was very likely growing back. At 15, she was old enough to know what that meant. Whatever effect the gene therapy experiment had had -- and it was impossible to measure at this point -- it had not worked a miracle for Becca.

Yet he also tried to comfort her. She wasn't in any immediate danger "of anything really bad happening," Packer said. He left room for hope. "We can't tell for sure what it means. We just know that it's not good news because we wanted it to go away and it didn't."

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e asked if she had questions, and she shook her head no and didn't say a word. She was still sucking on the grape popsicle and swinging her legs off the examining table.

"I'm sorry," Packer said. He patted her on the left knee and stood up out of his chair. "You take care." She smiled at him, then hopped down and walked out with her dad.

It was Becca's idea to stop in the cafeteria before heading home. "I don't have much homework tonight," she said.

She got a chocolate pudding, and Joe Lilly got a fruit shake. They split a slice of pepperoni pizza. They picked out a table by the window and watched the evening sky turn dark and thunderous. She told her dad about the art project she had worked on that morning at school. It was a drawing of a shelf with flowers on it. "I don't know what kind they are, but they're purple, dark purple," Becca said. She scooped the whipped cream off her chocolate pudding and set it aside.

Anne Marie comforts her sister before her fourth operation.
James A. Parcell--The Washington Post

"Dr. Packer's a cool doctor," she said out of the blue. She talked about running into him the week before at a Capitol Hill reception to honor medical researchers. It was the first time she had ever seen him in a suit coat that wasn't white and the first time he had ever seen her in heels.

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ecca was still smiling, but subdued. There was no other mention of cancer, or surgery, or what she had just been told.

They left the hospital just as the downpour began, the sky jagged with lightning. As they rode home through the flooded streets and slashing rain, Becca and her father reminisced about other big storms they had been through, in New Orleans, in Kansas, in Takoma Park.

As soon as they got home, Becca went off to her room and Joe Lilly went into the kitchen to tell her mom, Maureen, the disappointing news.

Then the family sat down to supper.

"Aren't you going to tell Mom what Dr. Packer said?" Becca asked her dad.

"Why don't you tell her," he suggested. Both parents were curious how she would interpret what Packer had said.

"He said the cancer probably came back and I may have to have surgery again," was how Becca put it.

All evening, they kept checking on her, wondering how she was handling it. Was she okay? Was she alone? Had she gone to bed? Was she having trouble falling asleep? Nothing looked out of place or different with Becca that night.

"I don't think we've ever been able to tell how well she's doing by how she looks," Maureen Lilly said. "It's one of the signs, but it's never the only one."

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aving a child with cancer means periodically getting your wind knocked out. The previous times when Becca's tumor recurred, her parents got the news first and then, after discussing what might come next, broke it to her.

This time, Becca heard it directly from Packer, a couple of minutes after he and the radiologist had gone over her MRI scans. This time, she learned before anyone knew what might come next -- a biopsy, another full-scale operation, or wait-and-worry. Or what?

The aim this time was not a cure. It was damage control; it was buying time.

"This is an uncharted one," Maureen Lilly said.

Packer himself was shaken. He had delivered that kind of message to hundreds of children and their families. But Becca was nearly 16. He had been treating her for more than four years. In Packer's line of work, a doctor rarely gets to know patients for that long.

"You try to be compassionate and understand the horrible information you're conveying," he said. "And yet at the same time you have to be honest."

Now the options were even narrower. He would talk to the neurosurgeon, and they would weigh the risks and benefits of yet another operation and then talk it over with the family.

"I don't want to put her through any more than necessary," he said. "She's been through so much already."

Over the next few days, Packer and neurosurgeon Steven J. Schiff decided to recommend surgery, but they were still not sure how much tumor could be safely removed -- or what would come next. In medical terms, they had to decide how aggressive to be. To make a follow-up treatment possible, they would have to remove at least 75 percent of the tumor. Taking much more would risk serious brain damage.

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wo weeks ago, Becca went back to Children's for yet another brain operation -- her fourth. It was the day after Memorial Day and exactly five years since she had first blacked out from a seizure -- the first hint of trouble.

Her usual stoicism broke down when she heard the possibility of going blind or losing strength on her right side.

The aim this time was not a cure. It was damage control; it was buying time. If they could remove enough tumor to delay symptoms, that might give Becca a chance at one more experimental therapy.

"Last time, I tried to get every bit of tumor that I could," said neurosurgeon Schiff, standing next to Becca's brain scans lit up on the operating room wall. "Looking at these films, I think I may be able to get 80 percent, maybe 90 percent." Even that would likely damage her vision slightly. The tumor itself had begun to affect her peripheral vision. This surgery probably would make that worse.

Becca and her parents, in a meeting with Schiff, had been warned about these and other dangers. Doctors have an ethical obligation to be frank about a treatment's risks, which in brain surgery are many. But Becca tended to take even potential risks quite literally. Her usual stoicism broke down when she heard the possibility of going blind or losing strength on her right side.

She cried all through the meeting.

The operation took five hours. Schiff followed the same incisions he had made in November, starting with the question-mark-shaped line above her left ear. Still it took two hours to get at the tumor.

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tiny sample of tissue was sent to the pathology lab, where it was quick-frozen, thin-sliced and examined under a microscope. The pathologist quickly confirmed that it was cancerous: a malignant high-grade astrocytoma.

Guided by the ultrasound monitor beside him, Schiff went about removing as much tumor as possible. That took nearly two more hours of delicate work, trying to distinguish between infiltrating tumor and normal brain, making sure not to damage any key blood vessels or nerves.

"We've taken as much out as we think we ought to," Schiff said finally. "There's still tumor in there. I'd like to say I got 90 percent of it, but it's probably more like 80-some." He could have taken out more, he said, but only by causing her the same effect a stroke might have in an older person.

Recovery came slower this time. Even when awake, Becca was anxious and confused at first. In the intensive care unit, she insisted that her dad spend the first night at her side; he catnapped on a stool with his arm hooked around her bedrail and his chin on the top bar.