 A Bold Gamble  A Setback  Confusing Choices  Chemical Warfare  Still Dancing  In God's Hands
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In the past, if she couldn't remember how to write a word, she would simply ask someone to spell it for her. Now she sometimes forgets how to make the letters. If someone tells her "t," she might write a "j."
"That's not dyslexia," Maureen Lilly said. "That's the tumor."
Sometimes, while talking, she'll take several tries to get to a common word. At dinner recently, asking for the salad dressing, she first called it "salt," then "bread," then the "salad covering." It's as if she were recovering from a mild stroke.
She has learned that "sorta" is a canny all-purpose answer to confusing questions. "Time out -- I'm lost," she'll say if a conversation moves too fast for her.
But she also can be as engaged, mischievous and "with it" as any typical teenager.
"Dad? I love you, man!" she croons with a big smile and her best imitation of the Bud Light ad. "Can I have two dollars?"
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Good Counsel is familiar territory; it's her third year. "She thrives here," said Gail Donahue, a resource teacher. "She's very much part of the group, and she has lots of friends."
Donahue is Becca's on-campus guardian. If Becca gets confused or frustrated or needs help with a lesson, she finds Donahue and they work it out.
The biggest change from last year is Becca's loss of auditory memory: She remembers what she sees, but not always what she hears. Last year, Donahue could get a lesson across by putting it on tape and letting Becca play it back. Now she and Becca's other teachers rely increasingly on the visual: pictures, diagrams, maps.
"There's definitely a marked difference this year," said Paul Ravenscroft, Becca's guidance counselor. "She just doesn't retain things. But you throw all that out when it comes to her attitude."
The remarkable thing, he said, is the way other students accept Becca as a peer.
"Becca wants to be like everybody else," said her classmate and close friend Karen Gangloff. "She's trying to be as normal as possible, even with all she has to go through."
"Becca has a hard time coming to terms with the fact that she is in any way different." |
"She's one of the bravest people I've met. Even when she's feeling sick, I have to like force her to go see the nurse. She's kind of stubborn that way."
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"Becca has a hard time coming to terms with the fact that she is in any way different -- because of her dyslexia or because of her tumor," her father said. "She just can't accept that."
If only she would tell her parents what she wanted most to do -- revisit Disney World or go on an airplane ride or whatever -- they'd make it happen.
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Perhaps it's because what she wants more than anything else is to be a normal kid.
The Lillys try to get her to set goals -- and limits -- for herself. Don't bring all your books home, they advised. Don't plan on more than one hour of homework a night.
"But how am I going to pass?" was Becca's reaction.
"Not to be like everybody else is very difficult for her," said neuropsychologist Pam Walters, who interviewed Becca at NIH in September and tested her speech, memory, intellect and emotional adjustment.
Becca's frustration was not a sign of depression, Walters said. It was entirely appropriate for a teenager in her situation. Indeed, her trademark was her spunk. The day she finished her first round of chemo, for example, she managed to stay cheerful despite fighting off nausea.
"She looked so good," Walters said. "It was like, I'm done with this and now I can go home and be a kid again."
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It was unrealistic to think that chemotherapy would cure Becca's tumor, said Peter Adamson, a pediatric cancer specialist and researcher at NCI. The hope was that it might help slow the tumor down and fend off symptoms for a while.
"Whenever something new is being tried, we get hopeful," Adamson said. "We have to temper that hope with the reality of knowing how aggressive and difficult to treat this disease is."
If the Lillys didn't try chemotherapy, "they would always look back and wonder what might have happened if they had," said Becca's older sister, Anne Marie, who's studying to be a nurse. "I think they gave her the option of not doing anything. I think Becca understood that."
The week before Becca started chemo, Adamson talked with her about more day-to-day concerns. He encouraged her to keep up her energy by eating whatever appealed. A short hairstyle might make it easier to cope with falling-out hair. They talked about hats, bandannas, wigs.
Anne Marie Lilly, in a sisterly show of support, pledged to shave her own head if Becca's hair fell out.
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The morning her chemo started, Becca sat on the bed in her green sweats and "In The Zone" T-shirt, playing Sorry with her family. Two pint-sized plastic bags lay at her feet, one containing carboplatin and the other RMP-7. Both connected to a blue Walkman-sized pump and then to the tube leading to her chest.
An anti-nausea drug dripped in first, for 15 minutes. Then, guided by the computerized pump, the carboplatin flowed into a vein near her heart for 60 minutes. After 55 minutes, with the chemo at its peak in her bloodstream, the RMP-7 kicked in for 10 minutes.
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"I think I might throw up," she said.
They moved the Sorry board out of the way. Her sister handed her a pink bedpan shaped like an enormous kidney bean.
"Just relax," Joe Lilly said. He rubbed her shoulder as she spat up into the bedpan. She wiped her mouth with a tissue and lay back against the pillow, a washcloth across her eyes.
One morning last summer, Becca's mother was reading aloud a newspaper article to Becca and her 5-year-old sister, Sarah, when Sarah interrupted and said: "Mom, is Becca gonna die?"
Maureen Lilly caught her breath and replied, "We're all going to die sooner or later." She expanded on that thought, mentioning God and explaining that Becca had a very serious disease and that they were doing everything they could to make her well.
Then she turned to Becca: "How would you answer Sarah's question, Becca?"
"What question?" Becca said.
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Becca's favorite class in high school is an elective that doesn't even meet at Good Counsel.
It was Gail Donahue's idea. She was searching for a "life skills" project to take the place of academic subjects Becca can't handle, such as chemistry. She knew Becca was crazy about young children.
Which is why, three mornings a week, Becca joins Mrs. Cihlar's preschool class at St. Andrew's Apostle School, not far from Good Counsel.
"The children adore her," said Jean Cihlar.
"Becca! Becca! Becca! Over here!" As soon as she walked in one morning this month, 18 squirmy 4-year-olds started competing for her attention. "Give her some room!" Cihlar pleaded as they crowded around.
For an hour and a half, she helped them crayon, cut out finger puppets, play house, build highways and castles, sing.
"She plays with us and stuff," Sammie Mooney explained.
"She's our friend," added Arianne Smith.
Christine Bowman made her a pizza out of greenish-blue gunk. "No thanks, I'm stuffed," Becca said. "You don't really eat it," Christine assured her. "It's Play-Doh."
"Becca, can you do this part?" Tino Marigliano asked, handing her a rose-colored pig to cut out. She showed him how stay inside the lines. "You can do this," she told him, handing the paper back. "Look, Becca, I did it!" shouted Tino a moment later. They slapped high-fives.
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Each session with the 4-year-olds puts Becca on an emotional high, Donahue said. The first thing Becca told her after her initial visit to St. Andrew's was, "They really like me."
The week before Halloween, Becca pulled a trick on neurologist Packer. She had borrowed key accessories from her doctors and nurses at NIH. When she saw Packer coming down the hall for her appointment, she hid around the corner and ambushed him.
She was wearing a physician's white coat over her sweat shirt and jeans, an old pair of her father's wire rims on her nose, a stethoscope around her neck and a knee hammer in her hand.
"Come on, into my office," Becca said, leading a startled but obedient Packer to an examining room. She ordered him to sit on the table, and put him through the neurological motions he normally demands of her.
"Say: How much wood would a woodchuck chuck if a woodchuck could chuck wood?"
"No ifs ands or buts," he replied, stealing his own line.
The cruel part was that she was feeling well. |
Then she hammered his right knee -- vigorously, with the hammer backward -- before he finally restored order and went back to being her doctor.
The most obvious side effects of chemotherapy may be nausea and hair loss, but the most dangerous one is its toxic impact on the bone marrow, the body's blood factory. By temporarily wiping out production of blood cells, it can drive the blood counts down, leaving a patient vulnerable to bleeding and infections.
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After Becca's first round of chemo, her platelet count plummeted to 7,000 from a normal range of 150,000 to 450,000. She needed transfusions of platelets and red blood cells. Even more worrisome, her white cell count tumbled. Ordinary infections that her immune system would normally fend off with ease became a major threat.
Her October brain scan was reassuring: no change. The tumor seemed to have stabilized. The doctors scheduled a second round of carboplatin/RMP-7, but going ahead became a frustrating numbers game. Becca felt fine, yet her subpar counts kept delaying the very treatment that might be her only hope of stymieing the cancer. At times, she seemed hostage not only to the tumor but also to the fine print of the protocol, the rules governing her treatment.
"God himself can't get it moving if it's not in the protocol," Maureen Lilly said.
Finally, Becca's blood counts bottomed out and returned to normal, and she got another two-day dose. All in all, she weathered the chemo surprisingly well: a few days of feeling blah with an unruly stomach, then a couple of blood transfusions as the blood counts fell. The second round was a bit rougher, causing more fatigue, more stomach cramps, a few nosebleeds and some crying spells.
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And she still had her hair.
"Despite our best efforts," Adamson joked to her. "You'll have to tell me your secret."
Last week, Becca had another brain scan at NIH. She had suffered a couple of dizzy spells in the previous two weeks, one at school and one at home. The doctors feared they might be small seizures triggered by the tumor.
Becca was in the clinic waiting room when oncologist Adamson sat down next to her and put his hand on her shoulder.
"It's grown a little," he said. "Not lots, but a little."
Becca nodded without saying a word.
They had to cancel the third round of carboplatin/RMP-7, set for today. The combination didn't seem to be helping her. It was too soon to know what they would try instead, but there were several possibilities, he assured her.
The cruel part was that she was feeling well.
"We'll come up with something," Adamson told Becca. She gave him a hug.
The doctors and the Lillys walked down the hall to a room where they could display the scans on a light screen and compare August with November, side by side. The change since August was unmistakable: more spots and swirls of white. The tumor was growing upward from the rim of the cavity left by her surgery last May, infiltrating tissue the surgeons had not dared cut out.
There were still reasonable treatments to try as long as she felt okay, Adamson said. "If she's fed up, that's another thing." He said it as a question, giving the Lillys a chance to say yes, she is fed up.
"No," Maureen Lilly said without one flicker of hesitation.