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Allison Winn survived a malignant brain tumor and is now helping others

Allison Winn

Allison Winn is 13. For some parents, the age alone signals trouble. But Allison — a slight girl with cool glasses and sleek dark hair — is bright, reserved, disarmingly honest and super polite.

Accompanied by her mother Dianna Litvak, Allison walks down the IJN hallway with wary confidence. Would she like her mother be present during the interview? “Yes,” she says emphatically. Asked and answered.

Her Bat Mitzvah announcement, which appeared in the Aug. 9, 2013 IJN, contained a small, startling paragraph: “Allison was diagnosed with a malignant brain tumor just before her seventh birthday.”

That’s one of the reasons she’s here today — but not the only one.

She formed the Stink Bug Project in 2009. Since its inception, she has raised $80,000 to help children with life-threatening illnesses by selling dog biscuits to canines in the Prison Trained K-9 Companion Program.

These dogs become loyal friends to kids in need of constant love and licks. Sadly, some of them outlive their human charges.

The Bat Mitzvah went swimmingly, Allison says. “My parsha was Shoftim. The Israelites are almost out of Israel, and Moses appoints judges.

“I said in my speech that this would make Moses and Joshua very happy because the Israelites were like little children on a long car ride: ‘I’m hungry! I’m thirsty! Are we there yet?’”

A rare waterfall of words spills from Allison’s mouth. Though she can be extremely reticent, the subject determines her response.

In April, 2007, Allison was watching television with her younger sister Emily at the family’s condo in Steamboat Springs when she realized she could see two TVs.

Allison told her father, Dr. Brian Winn, and he immediately phoned a colleague who said she was experiencing “ghost vision.”

“That night we drove to Children’s Hospital in Denver,” Allison continues, “and I had an MRI. We were driving back to Steamboat and my mom’s phone rang.”

Dianna, who relives every moment, is quiet.

“Mom turned around, looked at me, and said I had cancer.”

Just like that?

“Just like that.”

Allison was diagnosed with medulla blastoma, a malignant brain tumor in her cerebellum.

“I am a cancer survivor,” she says.

“I spent a month in the hospital after surgery, had chemotherapy for 14 months and an additional six weeks of radiation.”

Allison, who had no idea what cancer was at the time, admits that she’s “blurred out” a handful of details.

“You gave all the doctors dirty looks,” Dianna coaxes. “Remember?”

“Nope.”

Sometimes adult children serve as repositories for their aging parents’ memories. In a chronological twist, Dianna is the guardian of Allison’s clouded experiences — but she’s also the one person who can share a mother’s perspective.

The moment she heard “brain tumor,” the bottom fell out of Dianna’s world. “You instantly assume that brain tumors are fatal,” she says. “My husband Brian, who understood the medical side, knew that this particular tumor was very bad.

“Fortunately, children have a better chance. But Brian’s hair turned gray in a matter of weeks. I think it’s harder when you understand the full scope of what’s going on. Don’t you think it was really hard on Daddy?”

“Yep,” nods Allison, who is entering her monosyllabic phase.

“All mothers have their worst fears,” Dianna says. “But in our case, our worst fear came true. That’s not easy to survive. We were lucky. We found the cancer early.

“The surgery was very successful — but due to the nature of the tumor, she had to endure chemotherapy and radiation,”she says.

“I knew a lot of families were receiving much worse diagnoses. We regained our footing and focused on getting her through the treatments.

“When it was over, and Allison was not only healthy but wanted to help others, we really counted our blessings.”

Dianna sits opposite her daughter, but it’s as if her heart holds her hand.

“I know there are parents we’ve met during this process who have lost their children; kids we donated dogs to have died,” Dianna says.

“Until you’re faced with the world of childhood cancer, you don’t think about it — unless someone sends you a Facebook post or you receive a text for financial donations.

“But when you have to live with it, you feel . . . Allison, what would you call it?”

The petite girl scrunches her face thoughtfully.

“Traumatizing?” she offers.

While Dianna dismisses the adjective in search of a better fit, it’s apparent that Allison is speaking for herself.

The IJN puts several questions to Allison.

Were you afraid of dying?

“Nope.”

Did you comprehend the significance of death?

“Nope.”

Does your early experience with cancer set you apart from other kids?

“Nope.”

Do you understand something about life that other kids your age are unable to grasp?

“Yes, I do. But I can’t explain it.”

Do you feel lucky?

“Yes, I feel very lucky.”

Allison’s cancer was officially declared in remission in June of 2013.

“No cancer,” she smiles.

“No cancer,” Dianna sighs.

During treatment, Allison had good days and bad days. Regardless of her physical status, however, her will remained intact. She wanted a dog. Period. Her parents acquiesced and brought Coco into their daughter’s life.

Coco is Allison’s beloved friend, constant companion and inspiration for the Stink Bug Project. (Stink Bug jump-starts her verbal contributions.)

“My parents got me Coco after I finished treatment in 2008,” she says.

“She is my friend. She knew when I wasn’t feeling so great and when I was feeling good.

“We all went up Steamboat. I drew a stink bug: cancer stinks, and so does chemo.” It also symbolized chemo and cancer flying away. Underneath her drawing she wrote, “Bye, bye stink bug.”

Allison had attended a camp offered by the Denver Dumb Friends League and was instructed in animal care and making dog biscuits. “I put the two ideas of helping kids and selling dog biscuits together.”

The successful project is labor-intensive. Volunteers bake biscuits once or twice a month in a rented commercial kitchen. The ingredients are donated.

Although Stink Bug originally concentrated on finding dogs for cancer-stricken children, it has expanded to include all life-threatening illnesses.

Rocky Mountain Children’s Health Foundation is now a partner.

“Most of the children have cancer,” Dianna says of the recipients. “Some have kidney disease. Others have cerebral palsy and are in wheelchairs.”

While these canines are not service dogs, they have been trained to adapt to wheelchairs.

Allison, with a big assist from her mom and a cadre of volunteers, is responsible for obtaining dogs for 35 families with seriously ill children.

“Dogs really can help a sick child,” Allison says. “I should know.”

Dianna praises her daughter’s ingenuity and commitment. “As you can tell, the real inspiration and heart of Stink Bug is Allison, because she wants to continue helping other children.

“I have always been grateful to have Allison here with us. She is always so optimistic. We were in a very yucky situation but Allison made something positive out of it. We are helping her fulfill her dream.”

Allison is an eighth-grader at the Girls Athletic Leadership School (GALS). With the exception of annual scans that keep her parents awake all night, she’s a normal 13-year-old cancer survivor — paradoxical, and extraordinary.

More questions land on her upturned face.

Do you have a boyfriend?

“Nope.”

Do you want a boyfriend?

“Nope.”

Were you afraid of the surgery?

“No.”

Are people kind to each other?

“Usually. But sometimes not enough.”

What do you want to be when you grow up?

“A teacher, or perhaps a small business owner. That would be fun. I thought about running a non-profit but I’m not sure right now.”

Do you visit ill children in the hospital?

“I don’t like hospitals. I don’t like seeing all the MRIs and IVs.”

If you could choose to get sick when you did or at age 25 or 50, which would you prefer?

“When I did,”she says. “I’m over it and I never have to go through it again.”

Dianna returns to the Bat Mitzvah, that glorious day she feared her daughter might never live to see. “It was such an amazing experience,” she says, restraining her emotions. “I had been dreaming about her Bat Mitzvah for years. Her dad and I were so excited and proud.”

Asked how her father reacted to the ceremony, Allison laughs.

“He bawled the entire time.”

In her speech to her parents, Allison said, “Now that I’m a Bat Mitzvah, G-d is going to judge me personally for my actions, and not my parents.”

So this means you’re an adult — and still a kid?

Exactly.”

You must love your parents very much.

Dianna holds her breath ever so slightly.

“Sometimes,” Allison says. “Yes, I do.”

Do you ever get angry?

“Sort of, like when my mom is really mad at me for some weird reason or for no reason at all.”

Her smile is like a rainbow peeking through the rain.

“Spoken like a true 13-year-old,” Dianna says.

“Yep.”

For information on Stink Bug, access www.stinkbugproject.org.

Copyright © 2013 by the Intermountain Jewish News



Andrea Jacobs

IJN Senior Writer | andrea@ijn.com


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