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Shaye Marie: “Hope gives you the strength to move on”
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Shaye Marie: “Hope gives you the strength to move on”

Shaye Marie: “Hope gives you the strength to move on”
Photo Credit: Shaye Marie Sauers Kilby/Courtesy to WSB Radio

Shaye Marie: “Hope gives you the strength to move on”

Shaye Marie Sauers Kilby has a butterfly tattooed on her hip. 

"I had it done after my scoliosis surgery," she says, "And my mom was like, 'You want a tattoo after all you've been through? That's weird.'” 

"It's a good memory," smiles Shaye Marie. 

Shaye Marie Sauers Kilby/Courtesy to WSB Radio
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Shaye Marie Sauers Kilby

Photo Credit: Shaye Marie Sauers Kilby/Courtesy to WSB Radio

She's looking at a photo of herself as a toddler, cropped from a larger picture showing her being held by former Atlanta Falcons quarterback Steve Bartkowski. 

Shaye Marie Sauers Kilby/Courtesy to WSB Radio
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Shaye Marie Sauers Kilby

Photo Credit: Shaye Marie Sauers Kilby/Courtesy to WSB Radio

The butterfly on the flyer, which was the model for the one on her hip, is the logo of the Brain Tumor Foundation for Children, founded by Shaye's parents, Sheila and Rick Sauers, in 1983.

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Shaye Marie: “Hope gives you the strength to move on”

Their daughter had been diagnosed at Egleston with medullablastoma, a malignant brain tumor on the cerebellum, in 1980 when she was just five months old.

Shaye Marie Sauers Kilby/Courtesy to WSB Radio
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Shaye Marie Sauers Kilby

Photo Credit: Shaye Marie Sauers Kilby/Courtesy to WSB Radio

The prognosis was grim: Shaye was given just a 2% chance of living another six months. The Sauerses dug into medical books and sought out advice and support, but there wasn't a lot of it at that time--so the BTFC was born. It was a place where parents going through the same thing with their children could find support, information, and advice. The BTFC grew into a source that provided financial assistance for those families in the southeast. Bartkowski spent time as a spokesperson for the foundation.

In the meantime, Shaye was surviving. Photos show her blonde-eyed and smiling, whether posing in a studio or beaming from a hospital bed. She doesn't have much memory at all of her cancer fight, seemingly having purposely blocked it out, and is learning a lot of her own story now, as a 39-year-old adult. 

Shaye Marie Sauers Kilby/Courtesy to WSB Radio
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Shaye Marie Sauers Kilby

Photo Credit: Shaye Marie Sauers Kilby/Courtesy to WSB Radio

"I wanted to find out how it feels to be about to hit the big four-oh, knowing that as a baby, your parents were told, 'This little girl is not going to make it,'" asks WSB's Veronica Waters. 

"I would say pretty freaking awesome," Shaye Marie says. 

Shaye says her sense of humor helps define her, and says her father taught her to laugh, even as a baby. As a child, she idolized comedienne and actress Gilda Radner, who fought cancer herself, and rehearsed Radner's routines to amuse herself and emulate Gilda's positivity. 

She's a two-time cancer survivor. 

"The cancer came back again when I was [9] as bone cancer, from the radiation," she says. "The radiation that I was given at the time they don't even give a child today. It was cobalt radiation, which was the highest dose they could ever give a child."

Shaye Marie Sauers Kilby/Courtesy to WSB Radio
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Shaye Marie Sauers Kilby

Photo Credit: Shaye Marie Sauers Kilby/Courtesy to WSB Radio

She says she's actually just now learning her history--having blocked most of it out as a child, not wanting to hear her mom talk about it as a teen, not wanting to feel different than the other kids her age, wanting to fit in with everybody else. In the past year, she's started combing through two big binders that document her medical history. 

She remembers only snippets which she says are like scenes from a silent movie: “terrifying” spinal taps; a stay in the ICU; nicknaming the staffers who sometimes drew her blood as "vampires;" the MRIs that she said "sounded like a bad rock & roll concert," in which her mom Sheila would sometimes get fussed at for grabbing Shaye's hand and tracing the phrase, "Love you more" with her fingertip in her daughter's hand, wiggling her in the machine. 

That's Shaye Marie's second tattoo, inked inside a bracelet on her left wrist. She loves that one, and says it shows "pure determination. It shows somebody that can beat the odds of anything. I consider this not part of a bracelet, but like a lifeline." She doesn't cover that one up any longer, the way she did at her 2015 wedding. 

Shaye Marie says she's learning who she is now, and is no longer blocking it out; she's proud of what she came through. 

She tells WSB that the idea for the BTFC was broached in the very same room at Emory where she would meet her future husband, Darren Kilby, decades later in a brain injury group meeting. 

"Did you know when you met Darren that he was the one, right then?" Veronica asks. 

"Pretty much when I asked him out, yes!" Shaye Marie laughs.

 

Shaye Marie Sauers Kilby/Courtesy to WSB Radio
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Shaye Marie Sauers Kilby

Photo Credit: Shaye Marie Sauers Kilby/Courtesy to WSB Radio

She estimates they dated perhaps six months before getting engaged, both all too aware of the importance of seizing the moment. Darren had suffered a brain injury from a head-on collision, but Shaye says they were seeing a lot of people pass on. 

"We just knew that time goes by so fast, and we were losing every survivor that was around my time zone, especially...with the Brain Tumor Foundation there were a lot of my friends that were dying. He and I were both like, we need to do something," says Shaye. 

Shaye Marie Sauers Kilby/Courtesy to WSB Radio
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Shaye Marie Sauers Kilby

Photo Credit: Shaye Marie Sauers Kilby/Courtesy to WSB Radio

The night they were carting cupcakes in to celebrate the news of their engagement with their support group, Shaye Marie's sense of humor was on full display. She giggles as she recalls saying, "I don't remember if I told our brain injury group we're engaged or not. Well, it doesn't really matter because we're all brain-injured and none of us are going to remember if we say it again!" 

Shaye had several surgeries and hospitalizations, including two bouts of spinal meningitis. One snippet of memory involves her parents saying that one of her shunts had infiltrated her heart. She says a doctor doing an exploratory surgery used a hanger to get it out. 

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Shaye Marie: “Hope gives you the strength to move on”

"My mom and dad both remember the doctor coming out with the coat hanger with my shunt on it," she demonstrates, holding up her arm. "It was like a fishing rod. He was so excited." 

She had a scoliosis surgery at 15, in which she had two rods implanted in her back. 

"I'm a lot of fun to take through the metal detector," she jokes. 

She also deals with the autoimmune disease lupus and has endured some balance and coordination problems as a result of what she calls her harsh, but lifesaving medical treatment as a child. Her adult life includes regular doctor's visits and check-ins for one thing or another. But she doesn't let any of it faze her. In fact, she makes clear that hope is in her blood. 

"I actually have the blood type of B positive," she smiles. 

Shaye Marie now volunteers multiple days a week at the hospital which helped save her life, saying it was God's calling that brought her to donate her time at Children's Healthcare of Atlanta. 

Shaye Marie Sauers Kilby/Courtesy to WSB Radio
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Shaye Marie Sauers Kilby

Photo Credit: Shaye Marie Sauers Kilby/Courtesy to WSB Radio

"Hope gives you the strength to move on. Hope gives you the ability to go through everyday life. You always hope things will get better. You always hope that if you you're ill, you'll get better. It's a very powerful word, and without it, you'd be lost," says Shaye Marie. 

"Children's Healthcare of Atlanta is a wonderful place to be. They saved my life almost 40 years ago. Parents, I know are scared; I've seen parents that are unbelievably scared when they come through the emergency room when they walk as fast as they can I know that they are wondering what's wrong with their child. I think kids are in the best place they can be. This place is absolutely wonderful. I've had the best number of doctors and people that have helped me along the way. I just think it's a wonderful place to give people hope that there is hope.”

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