Ashley Foundation Seeks to Meet the
Special Needs of Teens Coping with Cancer
By Karen Gardner
Assistant Family Editor
Frederick News-Post
Reprinted with Permission

Ashley Tamburri died at 16, before she got a chance to get her driver's license, before she could attend her senior prom.

Ashley was diagnosed with a brain tumor nine months before she died. She died last June 24. During this time, her mother, Darlene Armacost, attempted to help Ashley locate some fellow teens who could discuss their experiences as a teen with cancer.

Ms. Armacost, a hospice care coordinator, was unable to do so despite her professional connections. Instead, she started the Ashley Foundation, a non-profit organization that will help teen-agers, their friends and families deal with cancer.

"The principal focus is going to be on teen-agers," Ms. Armacost said. "Not on young children, not on adults. We were not only trying to help Ashley but help her friends, and help their families."

Ms. Armacost looked into support groups for her daughter, and found that most were for older adults, with people in their 40s to their 60s. "Ashley was so acutely aware of the differences she would have," she said. "She was worried about getting her driver's license and going to the prom, and other people were worried about their jobs and their kids.

Ashley Tamburri’s mother, Darlene Armacost (left), and other members of the Ashley Foundation board of directors, display the quilt that was presented to Ashley on the first "A Day for Ashley" fund-raiser in June of last year. Ashley, who died nine months after being diagnosed with a brain tumor, worked to organize the non-profit foundation to help other teens coping with cancer.

(Photo by Grace Beahm, Frederick News-Post)

"Adolescence is challenging enough under normal circumstances. When you're faced with cancer and you're that age, your emotions span the entire gamut. She was still concerned about her school schedule up until a few days before she died. She was still looking ahead."

She also wanted to leave something behind, her mother said. "If her life had to be cut short, she wanted to help other people," Ms. Armacost said. Ashley's life will be celebrated on the first anniversary of her death. On June 24, A Day for Ashley will mark her life and raise money for the Ashley Foundation. The drug-free, alcohol-free celebration will feature 12 local bands, and will be at Lynfield, on Hansonville Road, north of Frederick, from noon to 8 p.m.

"It's almost like she matured from a 16-year-old to a 46-year-old," Ms. Armacost said.

The Foundation will serve teens in Frederick, Howard, Montgomery and Washington counties. One of the goals of the Ashley Foundation is to distribute a video for teens and parents that contains footage of Ashley speaking with Dr. Terry Martin, a local psychologist who specializes in death and dying issues.

"We'll offer it to schools, individuals, churches, anyone who would benefit," Ms. Armacost said.

"There are only a handful of communities across the country with such programs," Dr. Martin said. "We could locate only two or three in the U.S. and Canada specifically for adolescents with cancer."

The teen years are an unusual time of life for anyone, he said. Adolescents are dealing with an array of growth issues. "They truly are at life's threshold," he said. "Yet they're dealing with the loss of a future and disfigurement. Those are difficult for anyone, but they seem to be very difficult for adolescents."

"Ashley was very shy," said Laura Rudy, a guidance counselor at Linganore High School and a member of the board of directors of the Ashley Foundation. "She wasn't someone who wanted to be the center of attention. It was amazing to watch her mature to someone who had a sense of purpose."

The foundation also hopes to put together a series of educational brochures about teens with cancer for the teens, their parents, their siblings and other family members, their teachers, their friends and the parents of their friends.

Another goal of the foundation is to organize a library of reference materials relevant to teens with cancer.

"It would be a catalyst for people to work through their own issues," Ms. Armacost said. "Ashley wanted to find other teen-agers who had cancer. They need to be able to network."

Ashley's goal was to be a pyschologist, to help people. "Because of what she shared with us, her life goal will materialize," Ms. Armacost said.

Ashley wanted to establish the foundation before she died, although the non-profit status necessary for a foundation that expects to survive on donations did not come until after her death.

The foundation is sponsoring a scholarship in Ashley's memory for a teen who has cancer or has survived cancer. There is also a grant program to subsidize the cost of counseling for the family as well as the teen.

"We're hoping to minimize the financial burden," Ms. Armacost said. "The Patty Pollatos (Memorial) Fund paid for a private duty nurse from Helping Hands, which allowed me to work some, and gave me an extra set of hands around the house when Ashley became very ill." Patty Pollatos, a Brunswick woman, died of breast and ovarian cancer in 1992, and each year, local singer Debbie Williams has had a fund-raiser in her memory to help others in the area with cancer. The fund now has about $250,000

The Ashley Foundation also plans to sponsor an annual retreat for teens with cancer. Instead of a support group, it will allow these teens to establish connections, to make friends and to discuss common issues and problems.

Siblings of teens with cancer can benefit from the experience of Ashley and her younger sister, Dana, now 14. "I watched (Dana) go through all the normal things, shock, anger," Ms. Armacost said. "There was the usual sibling rivalry, and there would be moments when they would connect.

"You can't sugarcoat death," she said. "You can't deny people an opportunity to say good-bye when the result is death. It's another loss." Dana had been looking forward to going to high school with Ashley to guide her way.

Ashley also reached out to her friends in her final months, asking them for support. "I would like to believe we helped those kids," Ms. Armacost said. "If we didn't reach out to the kids, she would have been isolated." Many of these teens were apprehensive when they visited, not knowing what they would see or what they should say. They learned through Ashley that these visits were nothing to fear.

Kelli Fink, who met Ashley through their mutual love for live music, said she learned Ashley was sick when she asked why Ashley was no longer coming to hear the bands play. "Her friends were amazed with her," she said. Ms. Fink is now on the Ashley Foundation's Board of Directors.

"She didn't take herself too seriously," said Ms. Rudy. "She wanted people to feel free to ask her whatever they wanted."

Anita Ebinger, a family friend who once worked with Ms. Armacost at Hospice, said, "Ashley's insight brings a perspective we never would have had."

Ms. Armacost, who is now assistant administrator for Heartland Hospice Services in Baltimore, said her profession didn't diminish the pain of losing her own child. "Nothing prepares you for that," she said.

What did help, however, was the support of others. Ashley's friends made her a quilt, and presented it to her at the first A Day for Ashley celebration, last June just days before she died. At that celebration, Ashley's favorite bands played, and $9,500 was raised as seed money for the foundation.

On the quilt, made by Ashley's friend Jennifer Luecke, are signatures from friends, written much like yearbook signatures. These read, "Ashley, this was a great day," "God bless you," "You'll always be in our thoughts," and "You are a sweet girl and I love you." The quilt also contains drawings of dragonflies, which Ashley loved.

The Board of Directors of the Ashley Foundation are: Ms. Armacost, Ms. Rudy, Ms. Fink, Ms. Ebinger, Dr. Martin, Brian Armacost, Lorraine Prete, Mark Rosenberg and Mark Schmidt.

In November, the board will sponsor another fund-raiser for the Ashley Foundation, this one geared for adults. It will be at the Silo Factory in Frederick, and will feature the band Junior Cline and the Recliners.

Ashley was grateful for the life she had, her mother said. "She'd look at some little kids with cancer and say, 'At least I had 16 years,'" Ms. Armacost said. "It's hard to understand that, but that's how she felt."