 A Bold Gamble  A Setback  Confusing Choices  Chemical Warfare  Still Dancing  In God's Hands
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ith the tumor still growing, Packer could not recommend continuing the initial chemotherapy combination that Becca began last fall. Instead, he suggested a new drug, temozolomide, that had been tried in about 50 American children, with promising but preliminary results in some of them. Unfortunately, Phase 1 testing of the drug (to prove safety) had finished, but Phase 2 (to measure effectiveness) had not begun.
Packer obtained special permission for Becca to take the drug immediately under a "compassionate use" exception to Food and Drug Administration rules. In effect, Becca started her own individual clinical trial, under Packer's direction. The exception is designed for patients who face extraordinarily hard-to-treat illnesses and are ineligible for an existing clinical trial of a still-unproven drug.
Normally, Packer doesn't like to go outside of official clinical trials, but in this case the formal test was not yet underway, and Becca had no time to wait. The drug's maker, Schering-Plough, agreed to pay for the medicine.
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he drug, a pill, is taken once a day for five days. Becca has gone through four rounds of temozolomide, one each month since December. The most recent round ended two days ago.
"Your hair is fantastic," Packer told her last month. "I keep looking at it and thinking: Are you really taking those pills?"
Each time Becca undergoes a brain scan, the Lillys steel themselves against the worst. When the news is ambiguous, they're relieved it's not awful. They have learned that reading a brain scan is as much art as science. Packer always cautions that tumors can fool even the most sophisticated MRI machines and that, for example, inflammation mimics cancerous growth on a scan. His calm, deliberate appraisal of Becca's February scan -- "not a great deal different from where we were a couple of months ago" -- brought the Lillys relief at first but seemed a little downbeat as they played it over and over in their minds.
"Clear as mud," Joe Lilly said.
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ecca was holding her own against the tumor, Packer had told them, "but we haven't seen what we really want, which is shrinkage." With no better alternative available, he recommended two more rounds of chemo, but he reiterated his earlier imponderable question:
"Is there a point when talking about cure is not really reasonable, and what we need to talk about is quality of life. We're in a long shot. You've known that before."
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The Lillys try not to leave Becca home alone anymore. On her left wrist, she wears a bracelet noting that she has a malignant brain tumor, a risk of seizures and an allergy to sulfa drugs, and listing an emergency phone number to call collect for her medical history. Even little Sarah knows how to speed-dial from home: 1 for Mom at work, 2 for Dad at work, 3 for sister Anne Marie's college dorm.
Her parents are no longer fazed when Becca forgets the name of a movie she has just watched or calls up from school to ask about car pool arrangements that they went over five times that morning.
"What's interesting is how it just became normal for her to forget stuff," Anne Marie Lilly said. "Now it's just part of her life."
Since her surgery last May, Becca's peripheral vision has been less than 100 percent on the right side. But it worsened markedly in the past few months. "It's not a blur, it's a void," Maureen Lilly said.
Becca got a new bicycle for Christmas but has not ridden it yet, which is actually a relief to her parents. And at a time when all her friends are getting their driver's licenses, Becca hasn't broached the subject.
"That makes me think she has some sense of her limitations," her mother said.
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till, when Becca's CYO basketball coach, Mike McGinn, offered her a chance to be a sort of nonplaying assistant coach this year, she nixed that idea. She wanted to play.
She has had to adjust to the reality of being a second-stringer, riding the bench during close games. She tires faster than last year, and her reflexes and reactions are slower, McGinn said. A lack of depth perception makes shooting difficult and leads to occasional air balls.
"I was, like, way off," she told Packer disgustedly the day after a bad practice. "The basket was here and the ball was over here." She held her arms wide apart.
At a practice scrimmage one night, Becca ran down the court on the right, looking to her left to catch a pass. With her head turned, her right-side blind spot was directly in front of her -- which is why she saw the ball but not the defender who cut in front of her to snatch it right out of her hands. Flustered, she uncharacteristically brooded over it for the rest of practice. She knew she had been in exactly the right position. It wasn't fair. Becca and her mother had a talk about it in the girls' bathroom.
But she's usually unflappable.
"There's very little anger in her," her grandmother Traber said. "She takes the knocks well."
"She's very laid back about [the tumor]," Joe Lilly said. "In some ways, she's not as aggressive as we would like. But that's her personality."
"It has to be bothering her, but she's a good cover-up-er," her grandmother said. "She never complains."
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henever neurologist Packer examines Becca, he asks her if she has any questions and tries to sense whether anything in particular is troubling her. She tends to respond in a teenager's shrugs and clipped answers: "yeah" or "sorta" or "I dunno." Rarely does she offer Packer much in the way of feedback, and she gladly leaves the medical talk to her parents.
After a recent MRI, she held up the glossy black-and-white scans of her brain and tried in vain to make out the traces of tumor -- what she called "this white thing around the other part." But she gave up "because I can't understand it at all. That's for doctors -- and really smart parents."
She nodded.
"You're welcome to stay. You're 16 now. Up to you -- your call."
"I'll go outside," Becca said.
Packer was worried, and not just about her loss of peripheral vision on the right. "I just don't think she's doing well," he said. The chronic fatigue and trouble with language suggested that the chemo was not having much effect.
If so, he said, "we obviously have to look for something else. And that something else becomes harder and harder to find." All the other possibilities were even bigger unknowns, in the earliest stage of testing in patients.
"How's her spirits?" Packer asked.
"Pretty good," Joe Lilly said. He mentioned basketball and dancing.
"You think she understands?"
"I think she understands, sort of," Joe Lilly said.
"I mean, does she realize where we are in this?"
"I think she's living in denial," her father said. "We don't get much more specific information out of her than you do," he added. "We don't fathom Becca very well."
They talked about her attitude and the risks of messing with it.
"The way she responds is her personal choice," Packer said. "I think the way she's coping is . . . phenomenally well." Her upbeat stoicism was fine with him as long as her parents agreed.
"I don't want to browbeat her into being depressed," Packer said.
At the annual Special Love Christmas party, Becca hung out with her friends from Camp Fantastic, a summer camp for children with cancer. But Kelley Bula wasn't there this year. She was at home, dying.