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Teen will share story at Dragonslayer Walk for Sarcoma event

Photo Credit: TIMES PHOTO: JAIME VALDEZ - Nathalie Traller, a Sunset High School sophomore, will share her experience battling Alveolar soft part sarcoma.Nathalie Traller's dark brown hair falls a few inches below her shoulders and is slicked back with a blue and white polkadot headband. When she gets lost in what she's saying, she runs her fingers gently through its wavy ends and looks to the side. A sequined phrase swoops across the front of her shirt, and her denim shorts are loose on her thin frame. The bright blue Nikes on her feet are laced with bright green laces and are perfectly clean.

For all intents and purposes, Nathalie is the quintessential 15-year-old American girl.

Everything, it seems, is in place. Everything except an electric brace just below the Beaverton teen's left knee — it stimulates the nerves in her leg, preventing her foot from drooping too much when she walks.

When Nathalie was diagnosed with Alveolar soft part sarcoma, commonly known as ASPS, two years ago, it seemingly came out of nowhere. Intense headaches were what led her to the doctor, where X-rays revealed tumors that had taken up residence in various parts of her body. Since then, it's been a constant battle with the rare disease that receives little attention, research or funds. Nathalie is determined to flip this reality, which is why she's speaking at the Sept. 13 Dragonslayer Walk for Sarcoma at Cook Park in Tigard.

“Just because you have a rare cancer, it doesn't mean you shouldn't get good treatments. You should have access to good stuff, as well,” Nathalie said. “I just want to let people know the challenges of having something that is more rare and there aren't many treatments for. I want (my speech) to be more uplifting and hopeful. Even though it's tough, there are still things we can do.”

Also helping to raise awareness and promote increased research is Tammy Wilhoite, executive director of the Northwest Sarcoma Foundation. In the six years that Dragonslayer Portland has joined the ranks of its slightly larger Dragonslayer Seattle counterpart, Wilhoite has continued working to help those like Nathalie to have better options for care.

“Protocols are so old you could be treated with 30-year-old protocols. Is there any other illness where they say, 'What did we do 30 years ago? We're going to do that now.' I mean, that just doesn't happen,” she said. “There's so much against anybody who gets a cancer diagnosis. But then when you get a diagnosis of a rare cancer that can't be treated everywhere, that can be really dangerous, you need everybody to pitch in and help.”

Sarcoma comes in more than 70 forms, and Wilhoite has had it described to her as “the only tumor you can get at any age at any part in your body.” This is part of why sarcoma makes up 15 percent of pediatric cancer cases.Photo Credit: TIMES PHOTO: JAIME VALDEZ - Nathalie Traller, 15, middle, stands next to her 13-year-old sister Kelley and her mother Vicki, who are members of her support group for the sixth annual Dragonslayer PDX Walk for Sarcoma at Cook Park in Tigard. Nathalie suffers from a rare form of cancer called Alveolar soft part sarcoma or ASPS.

In Oregon, the largest sarcoma treatment facility is at Oregon Health and Science University, and it's where Nathalie is treated. Sarcoma patients in other parts of the country and world often have to travel hours to find specialized care, to the point that it often means they can't get proper treatment, said Wilhoite. Part of Northwest Sarcoma's mission is to help patients in such situations, and to ease the monetary burden for patients who qualify. One facet of Dragonslayer is to fundraise for such programs and research, but another is simply to pull the sarcoma community together.

“You do kind of feel isolated sometimes,” said Vicki Traller, Nathalie's mother. “It's hard enough having cancer; it's hard to have something rare. I think Dragonslayer is an excellent event bringing families and the community together for something important.”

Having been a participant in the walk for two years, Nathalie is ready to take her involvement to the next level through her speech. Though she isn't sure yet what to say, her father, Nathan, has promised to help her brainstorm. But, based on the writings she's published on her blog, words appear to be easily strung into beautiful sentences by the Sunset High School sophomore. Created with the purpose of letting others know what it's like to have cancer in high school, Nathalie lets readers have a glimpse into what life is like, on both the good days and the bad.

“It’s frustrating. Discouraging. Unfair. There’s been a lot of stress, tears and pain. We’re tired, but we’re not giving up. I have hope for pediatric cancer research, and I have hope for myself,” she wrote when explaining the extreme lack of attention paid to pediatric cancer. “I’m stubborn, determined and have grown stronger through all of this. I don’t throw in the towel easily. Right now, though, it seems like we’re one tiny fish in a gigantic ocean, one small voice in a crowd of millions. I will continue to fight with the hope of making a difference. After all, change begins with a whisper.”

Currently unable to walk for long stretches of time because of her weakening legs, Nathalie will travel much of the three-mile Dragonslayer loop by wheelchair. However, determined as she is in everything, she's planning to walk as much as she possibly can. And for a girl who's had nine surgeries in two years, determination is everything. Determination and a grit that allows her to view the world through a beautiful lens.

“I don’t despise the hospital,” she wrote on her blog. “I see the cracks in between that are bursting with love.”Photo Credit: TIMES PHOTO: JAIME VALDEZ - Nathalie Traller wears an electric brace, which stimulates the nerves in her leg.

Join the sixth annual Dragonslayer PDX Walk For Sarcoma

When: Saturday, Sept. 13, registration at 9 a.m., walk at 10 a.m.

Where: Cook Park, 17005 S.W. 92nd Ave., Tigard

To pre-register, learn more about Northwest Sarcoma Foundation or for more details about Dragonslayer, visit nwsarcoma.org.

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