 A Bold Gamble  A Setback  Confusing Choices  Chemical Warfare  Still Dancing  In God's Hands
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ecca and Kelley, of Derwood, had met through Special Love two years before, and the families had grown close. Kelley had a brain tumor too, a different type. The last time Becca saw Kelley was in October, in the waiting room on the 13th floor of the Clinical Center of the National Institutes of Health in Bethesda. Kelley was in a wheelchair, puffed up from the steroid drugs and no longer able to walk or hear or see very well. What struck Becca most was the way the steroids made her look fat.
After Kelley died in January, Becca told a teacher at Good Counsel that "it was better, because she was so swollen."
They went to the wake and the standing room-only Mass at St. Mary's Catholic Church in Rockville. Becca cried through the Mass. On the way home, Sarah was full of questions. "Do you still have cancer?" she asked Becca.
"Yes," Becca said.
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he Lillys were trying to learn to pace themselves.
Early last month, on Becca's first day back at school after exams, a teacher found her standing in the hallway, lost and wobbly. Her parents took the incident as a warning that Becca's teenager schedule and gung-ho attitude had a price. She might sail through a jam-packed day -- only to crash from fatigue the next morning.
"We can't do that anymore," Maureen Lilly said. "She doesn't call a halt, so we keep going and going -- and don't realize until too late that it's taking a toll on her."
"It's getting a lot harder for her," said her Good Counsel classmate Karen Gangloff, who's in Becca's math class. "In class, if the teacher is talking fast, she can't understand. She gets frustrated because she wants to catch up, but it's just too much."
"We all -- patients, parents and physicians -- go through phases in these cases," neurologist Packer said. "These diseases are marathons."
For many cancer patients, five years is a magic number: If they live five years beyond their diagnosis, it may mean the cancer is under control or even gone.
When Becca's tumor was diagnosed in mid-1991, the Lillys were told that three to five years was a realistic hope, with treatment. Now it has been more than five years, but five years of continual treatment. The five-year landmark -- last June -- held little magic for Becca; she was groggily recovering from her fourth brain surgery.
"Yeah, we got the five years," Maureen Lilly said, "but by no stretch of the imagination are we home free."
There were two especially scary times this winter.
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n the morning she was scheduled to start the temozolomide chemo, Becca came downstairs and said she felt "really strange." She was resting on the living room couch when she went into a seizure that lasted four minutes. Her eyes rolled and her body alternately shook and went rigid. Maureen Lilly dialed 911, and when the dispatcher came on, relayed his instructions to Joe, who was trying to help Becca until the ambulance came.
To the Lillys, it was eerily like the seizure Becca had nearly six years ago, before they even knew about the tumor.
Becca's little sister, Sarah, saw the whole thing. She dashed back and forth between her mom on the phone and her dad comforting Becca on the couch until they posted her by the window as a lookout for the ambulance.
It turned out that Becca had forgotten to take her anti-seizure medicine the night before. That was a something of a relief, to know that she might be able to prevent such seizures by taking the Tegretol pills. If she could remember.
The other scary spell came six days before Christmas. It started with double vision and a headache, then worsened into what Becca calls "that `whoa' feeling like at the top of a roller coaster." Becca called from the nurse's office at Good Counsel, and Joe Lilly raced from work and drove her to Children's Hospital.
Seated in the waiting room, she looked terrified, her eyes teary and unfocused. The world would not hold still for her. Her father stood directly in front of her and asked, "What do you see?"
"Two of you," she whimpered.
Packer ordered an electroencephalogram (EEG), a chart of her brain's electrical activity. On the way to the EEG room, Becca clutched onto her father and walked as if she were afraid of where to put each foot down.
In the EEG room she sat down and suddenly had to vomit. She grabbed a Foot Locker shopping bag and threw up into it. Then she tied her hair back with a rubber band and lay down on the examining table.
"Dad, give me your hand," she said. She gripped his right in her right, and closed her eyes.
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echnician Shirley Jacobs began attaching electrodes to Becca's head. Soon there was a tangle of 21 colored wires leading from her forehead, temples, chin and neck to a panel behind her, where Jacobs watched the computer printouts of squiggly brain waves.
The headache was subsiding, but she still saw double. Nausea came over her in waves.
"Just relax," her father said, holding her shoulders. "I got you. You're okay."
Packer came into the room. "Are you still dizzy?" he asked her.
The brain-wave printouts showed that whatever was happening in Becca's brain, it was not a seizure. It was probably the equivalent of a very bad migraine, triggered directly or indirectly by the tumor. Packer decided to keep Becca in the hospital overnight.
She protested with a scrunched-up scowly face.
The doctor pointed out that she wasn't eating, wasn't drinking and could barely walk. If they didn't replenish her fluids intravenously, she might become dehydrated. Plus, they had to make sure the spell didn't recur. He promised to kick her out of the hospital in the morning if she felt better.
"I just want to go to sleep," Becca said.
She was home by noon the next day.
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ecca had yet another MRI last week -- her eighth in the past year -- and once again the Lillys cringed. This time, the news was somewhat better. The tumor appeared to have stabilized. On some of the brain scans it even appeared slightly smaller than in January -- and about the same size as last November.
Packer was still worried by her symptoms: the fatigue, forgetfulness and trouble with language. "But we're dealing with a malignant tumor," he reminded the Lillys. "It's good news that we haven't lost control of it." Brain tumors that recur after treatment, as Becca's did, sometimes start to grow like wildfire.
For the time being, he recommended that she stick with the temozolomide chemo-by-pill.
"Better than we thought," Maureen Lilly said as they left Packer's office. "I was afraid he would say something else."
"Me too," Becca piped up.
"Really?" her mother said. "What did you think Dr. Packer was going to say?"
"That I'd have to try something new," Becca said, stuffing her geometry homework into her backpack.
"How do you feel about what he did say?" Maureen Lilly asked.
"Fine with me," Becca said. She had a busy weekend planned.
