Wayne 6-year-old dies from brain cancer; girl's parents turn grief into gift for research

By KARA YORIO STAFF WRITER | The Record

Lily LaRue Anderson loved animals, roller coasters, music, dancing, Disney and unicorns. Her biggest smile was not all teeth but all tonsils — an open-mouthed grin of pure joy and amazement.

The Wayne first-grader died Monday at age 6 from an inoperable brain tumor.

“She was more than just a child that went to this school,” said Susan Wardell, the principal at Ryerson Elementary School. “We really are a little family here. Lily had a light and energy and happiness.”

Lily was found to have diffuse intrinsic pontine glioma (DIPG) last May. Since then, Lily’s parents Barbara and Brian Anderson not only fought for the best care for Lily, they learned about the lack of progress in fighting the cancer. They were introduced to other DIPG families, and often grieved with them when their children lost the battle. Now, the Andersons want to help those who face this diagnosis in the future. They have donated Lily’s tumor to Stanford University.

“I didn’t want to feel that Lily’s suffering over the last 11 months was for nothing,” Brian Anderson said Tuesday. “If her tumor can help any kid with DIPG in the future, can help find a cure. … Nothing’s worth losing your child, but obviously it would mean something if her tumor led to a cure.”

Dr. Michelle Monje’s research team was the recipient of the glioma.

“I’m astounded by a family like Lily’s family who are thinking about future families at this unthinkable moment in their lives,” said Monje, an assistant professor of neurology and pediatrics at Stanford. “It’s so generous.”

It’s also “invaluable” toward understanding Lily’s kind of tumor, finding better treatments and eventually a cure, Monje said. Because of the diffuse nature of the tumor in the brain tissue and a lack of research facilities attempting to make the cultures, samples of these gliomas are rare. Monje’s team will use Lily’s tumor tissue to produce cultures that can be studied to test new therapy and to “learn about what makes the tumor tick,” Monje said.

Donating the tumor was something Brian Anderson had thought about since Lily’s diagnosis. The family chose Monje because she shares her cultures and findings with other research teams around the world.

“She’s all about curing DIPG,” Anderson said.

With no prior relationship, the Andersons reached out to her.

“That’s really remarkable,” Monje said.

Lily leaves behind the legions of members of what became known as TeamLilyLarue, her and her family’s support system and wish-granters since last May.

In addition to the staff and students at Ryerson — Lily’s mother and her aunts attended the school, and her twin brother is a first-grader — that team includes the Wayne Hills High School girls soccer team, the men’s and women’s lacrosse teams at Stevens Institute of Technology, the congregation at Our Lady of the Valley Church, friends at Davey’s Irish Pub and Restaurant in Montvale, and people of Better Homes and Gardens Rand Realty in Ridgefield. Friends, family and strangers became part of the Andersons’ personal mission. They followed her fight on the Facebook page her family created and frequently updated with her progress and adventures.

“Her family is grateful beyond words for the love bestowed upon Lily through all of your letters, gifts, notes, art, efforts, prayers, donations and random acts of kindness,” Lily’s page on the Vander May Funeral Home website said. “Everyone on #TeamLilyLaRue has been absolutely beautiful.”

During Lily’s illness, the school tried to help the Andersons by conducting fundraisers and sending messages, cards and artwork to Lily when she wasn’t well enough to attend school.

“We always felt we were supporting them,” Wardell said, “but in the end, they wound up supporting us through our difficulty and grief. They helped us. They made us better people.”

After her diagnosis, Lily graduated from kindergarten, was a flower girl, went to the circus, went on a cruise and took a trip to Hawaii with her family. She met and loved every therapy animal that came her way, from guinea pigs to dogs. In the last few months, Lily milked a cow, went to the American Girl store, was a model at a fashion show, flew in a New Jersey State Police helicopter and got slimed by Nickelodeon. She asked for — and got — a rainbow mohawk before embarking on a new treatment. She received her first Holy Communion and was confirmed.

Her mother, Barbara, occasionally wrote a blog chronicling the family’s battle, her latest entry coming on April 1.

“March was absolutely filled with stellar and amazing *amazing* firsts and dreams,” she wrote. “The gifts and outpouring of love have been life altering and beautiful. The kind of beauty that stuns one silent; in reverence.”

Her family’s stories describe a girl who loved to dance, sing, eat french fries, drink milkshakes and cause a little trouble with her twin brother every now and again. But she was also beyond her years in many ways. She would cry over the beauty of a love song, new baby or the perfect gift that arrived just as she had imagined it, according to her mother.

Lily is survived by her parents, Barbara and Brian Anderson, her twin brother Brady, older sister Jasmine and older brother Daniel; her grandparents Sophia and Eugeniusz Zak of Boca Raton, Fla., and Garry and Sue Anderson of Paramus; great-grandfather Paul Anderson; four aunts, Alicia Mustain and her husband, Blake, of Boca Raton, Gena Zak of Washington, D.C., Alexandra Zak of Washington, D.C., Christina Zak of Wayne; and one uncle, Eric Anderson, and his wife, Marlaina, of Paramus and Barnegat; and three cousins, Madison Mustain of Boca Raton, and Brandon and Hailey Anderson of Barnegat.

Friends may visit with the family at the Vander May Wayne Colonial Funeral Home, 567 Ratzer Road, Wayne, from 3 to 8 p.m. Thursday. A funeral Mass will be said at 10:30 a.m. Friday at Our Lady of the Valley Roman Catholic Church, Wayne.

The family asks that donations in Lily’s memory be made to the Lily LaRue Foundation, 908 13th Street SE, Washington, DC 20003. The foundation’s mission is to help families fighting DIPG and to donate toward research.