Six stories chronicle Rebecca's battle.
Discussion
How do you react to Becca's tale -- or the premature death of any child?
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One of the most difficult things for families facing a life-threatening illness, Adamson said, is to understand that doctors don't have all the answers. He lauded the Lillys for accepting as well as parents could "what we do and what we don't know" about brain tumors, even as they pursued every possible means of prolonging their daughter's life.
Adamson visited Becca at home last week and spoke with her -- as he had about six weeks ago -- about the seriousness of her condition and the lack of any medical treatment to stop the tumor. He asked her once again if she had any questions about what was happening, and she said she had none.
"I really got the sense that she was at peace, as best one can be," he said Friday.
About 10 days ago, worried that they might somehow be misinterpreting Becca's outward calm, Maureen Lilly asked her directly, "Are you afraid?" Becca said no.
Becca received Holy Communion daily. Because she had trouble swallowing, she could not take the wafer, but Joe Lilly squirted a sip of wine -- diluted with holy water -- into her mouth through a plastic syringe. Each evening, the Lilly family gathered around Becca's bed and held hands quietly or said the rosary and other prayers. Sometimes Becca's lips moved with the words.
Hail Mary, full of grace, the Lord is with thee . . .
After a fierce thunderstorm knocked out electrical power one evening last week, the Lillys read scriptural passages to Becca by flashlight.
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In response to a series of articles on Becca over the last 15 months, hundreds of Post readers sent her cards, letters, poems and prayers. Preschoolers colored for her. A Bethesda man gave her the Bronze Star he had been awarded during World War II. Former first lady Nancy Reagan mailed a jar of jelly beans.
"I am a 28-year veteran of the FBI and I want you to know that you are my hero," Ed Burwitz, of Stafford, Va., wrote Becca last week. "You are the most courageous person that I have ever known."
Becca seemed unfazed by such attention or by her harrowing treatments. Through it all, what she wished for most was to be an ordinary teenager. She rarely talked about her cancer, even to her closest friends and family.
She was a kid who loved hats, bears, dancing, a dog named Lady, angels, London broil, fried shrimp and basketball. She was turned off by loudmouths, people who are full of themselves, a purple dinosaur named Barney, bad basketball referees and bad hair.
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A competitive athlete in an athletic family, Becca played soccer, softball and, especially, basketball. Even this past winter, when her tumor was robbing her of stamina and peripheral vision, she played on a Catholic Youth Organization basketball team.
Five summers in a row, she attended Camp Fantastic, a camp for youngsters with cancer near Front Royal, Va.
Gene Therapy Pioneer
Most of Becca's medical treatment was at Children's Hospital, Georgetown University Hospital and the Clinical Center at the National Institutes of Health. After her tumor was diagnosed in 1991, she was treated with surgery and radiation -- standard therapy for glioblastomas -- in 1991 and again in 1994, when the tumor recurred. In the fall of 1995, when the tumor grew back again, standard medicine had nothing more to offer her, and she became the first child treated with gene therapy for brain cancer.
In Becca's case, that meant trying to trick the tumor into committing cellular suicide. After removing as much tumor as possible, surgeons injected into her brain a harmless virus carrying a gene designed to make the tumor more sensitive to a follow-up drug. If it worked, the virus would act as a kind of "taxicab" for the gene, transporting it inside the tumor cells, which would then become vulnerable to the drug.
Becca's tumor grew back six months after her gene therapy. What effect, if any, the gene therapy had on her tumor is unclear and will remain so until more patients can be studied and compared. At the least, Becca's case helped show that the initial dose was safe and nontoxic -- allowing doctors to boost the level for other patients. For Becca, a six-month lull in tumor growth was significant, neurologist Packer said, even though gene therapy couldn't cure her disease.
"It didn't work for Rebecca, but that doesn't mean it can't work for other children, if we get smarter," Packer said. "The only thing we can do is to continue to battle and find more things to battle [cancer] with."
Becca was also among the first children treated with several promising combinations of anti-cancer drugs in the earliest stages of testing in humans.
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The quality of Becca's life was the Lillys' touchstone as they made such decisions. Becca participated in their discussions, and she signed the medical consent forms before her pioneering gene therapy operation and subsequent surgeries.
The afternoon before Becca died, her close friend and Good Counsel classmate Megan McArdle sat by her bed for a while. Megan read aloud a letter she had written to Becca.
"I told her I loved her, and she squeezed my hand," Megan said. "It was like she didn't have to say anything because I knew exactly what she meant."
Besides her parents and siblings, survivors include her maternal grandmother, Adele W. Traber, of Riverdale, and her paternal grandmother, Nancy M. Lilly, of Washington.
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