Knox News Sports Awards: West's Sierra Shuck-Sparer is Courage Award recipient

Sierra Shuck-Sparer wakes up some mornings hoping the last eight months were all just a nightmare. That way she wouldn’t have to go through another chemotherapy session.

But then she will feel that her hair is missing. She will feel tired. And then she’ll have another session of chemotherapy for high-risk medulloblastoma — a cancerous tumor in the brain that starts at the base of the skull.

“It still sometimes just feels unreal,” she said. “Like it’s still not happening.”

Shuck-Sparer is the recipient of the Courage Award, which was presented to her at the third annual Knox News Sports Awards presented by Farm Bureau Health Plans on Wednesday at the Tennessee Theatre.

SEE ALL THE KNOX NEWS SPORTS AWARDS WINNERS HERE!

Instead of swimming for West, like she did last year as a freshman, or rock climbing with her friends, or ice skating at the Ice Chalet, or doing anything else 15-year-olds do, she has been in Memphis most of her sophomore year. First there was brain surgery, then proton radiation therapy and finally chemotherapy, which is scheduled to run through August.

After having an MRI last month, she was informed there was no evidence of disease. But she will still be monitored by St. Jude Children's Research Hospital, where she has received treatments, especially because the survival rate for medulloblastoma that has spread to the spinal cord is 60 percent, according to stjude.org. 

"There are many cases of medulloblastoma patients who have gone on to lead healthy, productive lives and our clinical care team does everything in their power to ensure that is a possibility for every patient," said Dr. Amar Gajjar, the Department of Pediatric Medicine Chair at St. Jude.

Most days, chemotherapy leaves her so tired that she lays down and watches marathons of “Love it or List it” on HGTV or does origami.

“When she feels horrible, she just feels horrible, but she doesn’t take it out on us," her father, Tim Sparer, said. "And I told her you have every right to be ... angry. And she said, ‘Yeah, but that’s not who I am.’”

A concussion that never got better

The first sign something was wrong was after she sustained a concussion in August. She and her parents followed all the appropriate steps to treat it, but after a few weeks, she still suffered from vertigo and dizziness, along with nausea and headaches.

School had started and she was cleared to do mild activities, but at one swim practice, she tried a flip turn and became really dizzy.

“It just kept getting worse and worse and worse,” said her mom, Cathy Shuck.

An MRI in October showed why: Shuck-Sparer had a tumor at the base her skull.

“That’s when they saw Gertrude,” she said. It's the name she gave the tumor because that was the ugliest, most awkward name she thought of.

Another scan in November showed the tumor had metastasized to her spinal cord.  

Said Shuck, “The tumor was so big, I thought it was part of the brain.”

When Shuck-Sparer told her friends she needed brain surgery, she said she would be able to dress up like Eleven from “Stranger Things” because she needed to have her head shaved. In the end, she had just a small portion of the back of her head shaved. 

She invited her friends over, and they hung out in the living room, as her two guinea pigs, Lulu and Bubbles, and her cat, Tiger, roamed around.

“We were just trying not to focus on it,” said Sloane Heagerty, 16, one of her friends. “We just kind of talked about how our days went and nothing too serious.”

She left a few days later for surgery at Le Bonheur Children's Hospital in Memphis.

'I looked in the mirror and just started crying'

When she first woke up after surgery, her head throbbed. Her neck was stiff and she was afraid to move her head. Everything was too bright. Everything was too loud.

At one point, she wanted to listen to the movie "Tangled," so her mom downloaded it to her iPhone and played the movie at the lowest volume while she closed her eyes.

The one part she dreaded was when she would lose her hair from the radiation.

"It's going to fall out anyway, so let's just dye it," she told her friends during one of her visits to Knoxville in November.

So she and nine of her friends ended up crammed in her bathroom. She dyed her hair teal.  

She got a pixie cut a few weeks later when small clumps of hair started coming off.  

The inevitable happened one weekend in December.

"It was like, 'OK, I'm ready for the next phase,'" her dad said.

Her parents alternate every week or two — one is in Memphis with Shuck-Sparer, the other stays home with their youngest son, Aidan — and that weekend they switched.

"I felt really bad," Shuck said. "As a mother, I'm not going to be there to support this."

But now, looking back, Shuck thinks it was better that Sparer was there because he has his own clippers and wears his hair really short. He shaved his daughter's head in the bathroom. She saw herself in the mirror when he was done and started crying. She didn't recognize herself.

"I was a lot more affected by it than I thought I would be," she said in a text message. "I looked in the mirror and just started crying."  

More than five months after that day, she said she's "mostly" embraced not having hair.

Cranes for Cures

In April, she launched an Instagram page titled “Cranes For Cures,” where she makes origami earrings and sells them.

Sierra learned origami in fourth grade, when her teacher’s aide from Japan visited her class.

Throughout chemotherapy, which started in February, there are many days when she feels tired and doesn’t have much to do. She started making a paper crane and thought, “What if I revamped my earring business?”

She started an origami earning business in middle school, selling little origami cranes to friends, teachers and parents. So she decided to start that up again, but, this time, with a twist: All the profits will go to St. Jude.

“They’ve helped me through treatment, they support us, they do everything,” she said of St. Jude. “It’s really something I enjoy doing.”

She’s made over $500 so far and recently received an order for over 50 pairs.

Now she can’t wait for the day in the fall when she wakes up and her hair isn’t missing. Her body isn’t tired.

She will wake and the nightmare will be over. 

Cranes for Cures:The Cranes for Cures Instagram page