For five years — nearly half her life — Kayla fought a rare brain cancer called ependymoma. She endured four brain surgeries, weeks of radiation and years of chemotherapy. The cancer took away the sight in her left eye, the hearing in her left ear, and her ability to walk and smile.
Kayla died March 8. She was a sixth-grader at Pyle Middle School in Bethesda, and was just weeks away from her bat mitzvah.
Few who knew Kayla believed that her disease, even with its daunting prognosis, would be stronger than she was. “We never lived like that,” her mother said. But maybe, her father, Eric, wondered, “maybe some part of her knew that she had to live a little bit in fast forward.”
Several years ago, Kayla’s teacher asked her students to describe themselves in a single word. By that time, Kayla was in a wheelchair and needed help to go about much of daily living. The word she chose: independent.
She took pride in her highly developed sense of style. Her favorite color: pink, all shades. Preferred motifs: butterflies, unicorns and rose petals. Jewelry: Less was not more. Hats: Yes. On school days, Kayla’s father would pull clothes from her burgeoning closet and hold up an ensemble for her approval. “I was always wrong,” Eric said.
In fourth grade, Kayla learned to play the violin, even though she struggled to manage the instrument on her own. Isabella Lorence, her friend since kindergarten, sometimes helped her hold it. “She just really wanted to have fun like everyone did,” said Isabella, 13.
Kayla insisted on going tubing and zip-lining and skiing. At home, she crawled up the stairs so she could remain in her second-floor bedroom, which she planned to make over as a beauty spa. Nail polish stains still dot the white carpet.
Despite her poor motor skills, Kayla made beaded jewelry with another longtime friend, Chloe Sitrin, 12, and sometimes tried to sell it for charity. Her other business ventures included Kayla’s Scrapbooks, priced at $3 per page with a five-page minimum, according to her business card.
Kayla set aside a portion of her money for the lavish gifts she gave to her friends; her parents; her brother, Sam, 14; and sister, Madeleine, 10. For his birthday this year, she gave her father a bottle of cologne. It was so expensive, Eric said, that he asked her to exchange it for a more modest item.
“Sometimes you should just say, ‘Thank you,’ ” she told him.
And so he did. He wears the cologne every day.
By the weekend before she died, Kayla’s health had started a rapid decline, and she was in increasing pain. “We knew things had taken a turn,” Laurie said, “but we didn’t have a timeline. ... I still look back and still think, ‘Thank goodness we said yes and still did things.’ ”
On Friday, March 2, Kayla insisted that she go on a long-planned outing to see Big Time Rush, a Nickelodeon-based boy band, in concert. Her friends picked her up in a limousine.
On Saturday, Laurie took Kayla to tea at the Ritz with some family members and girlfriends. That night, the American University women’s basketball team, which had adopted Kayla through a nonprofit that supports children with brain tumors, came to the house to paint her nails.
On Sunday, Kayla and her relatives posed for family photographs. At the last minute, she decided to dress up in what would have been her bat mitzvah outfit: a pink dress with a pink scarf and pink shoes.
Afterward, a magician put on a show for Kayla and her friends, a performance arranged because she had mentioned earlier in the week that magic intrigued her. “I didn’t want to leave,” said Hannah Seley, 12, one of the guests.
That night, Eric and Laurie decided to take Kayla to Children’s National Medical Center because they could no longer control her pain.
While she was in the hospital, an artist went forward with the mural Kayla had requested for her bedroom makeover. Kayla never got to see the artwork: a castle with a unicorn and roses, the petals painted as if they are fluttering out her window. She died on Thursday.
Kayla’s family has raised more than $230,000 for the Race for Hope, a fundraiser for brain tumor research, they said. The AU women’s basketball team — which never lost when Kayla was on the sidelines — has started a kids’ club in her honor. Dozens of people performed acts of kindness in Kayla’s memory, as the Wengers had requested.
Her fifth-grade teacher at Burning Tree Elementary, Judy Shapiro, keeps a copy of a picture book written by Kayla and illustrated by her aide, Margaret Finch. “A Bluebird in Paris” tells the story of three children who take in an injured baby bluebird, nurse it back to health and release it near the Eiffel Tower.
“The little bluebird sang a sweet song to them and flew up in the air,” Kayla wrote, “happy and strong.”
Emily Langer is a staff writer in The Post’s obituary section.