Knoxville swimmer survived brain cancer. After rough first few weeks at home, she's enjoying 'the now more'

Sometimes Sierra Shuck-Sparer wakes up in the middle of the night. She tosses and turns and usually can't fall back asleep. She picks up her iPhone, opens the notes section and starts writing on what the last year has been like. 

“I know that people say that things happen for a reason but there seemed to be no reason for the suffering I was going through." 

It's been two months since she moved back to Knoxville after spending nine months in Memphis at St. Jude Children's Research Hospital undergoing treatment for high-risk medulloblastoma — a cancerous tumor in the brain that starts at the base of the skull. 

The tumor was discovered in October 2018, followed by brain surgery, proton radiation therapy and chemotherapy, which ended Sept. 5.

But now Shuck-Sparer, 16, is back living in Knoxville in her two-story house, sitting by the giant window in the dining room as she does homework for her European history class. She goes to West High School four days a week and is home-schooled on Wednesdays. A member of West's swim team as a freshman, she's started going to practices once a week during her junior year.

But some days she wants to talk about having survived medulloblastoma, the most common malignant brain tumor in childhood, according to stjude.org. She wants people to know about the weight loss and weight gain, the hair loss, the nausea, the vomiting, the wondering of why at 15 years old she had to be in Memphis for treatment, away from her friends, her guinea pigs, Bubbles and Lulu, her cat, Tiger, and her 11-year-old brother Aidan. 

‘It’s kind of like watching your daughter evaporate’

Her friends and neighbors held a surprise party when she came home Sept. 5. She was tired from the six-hour drive from Memphis and wanted to go to sleep early. She ended up going to bed around midnight, as one her of friends stayed over. 

She thought the suffering and the illness were over now that she was back home. That part of her life would stay in Memphis, and she could get back to hiking, swimming for the West swim team, ice skating at the Ice Chalet, getting her learner’s permit and driver’s license. 

But that didn’t happen. The first couple of weeks, she couldn’t get out of bed without feeling nauseous. She couldn’t eat without vomiting.  She dropped down to 93 pounds, the lowest weight she's been at since middle school. 

“It’s kind of like watching your daughter evaporate,” said her father, Tim Sparer. 

Her clothes hung loose from her 5-foot, 3-inch frame. St. Jude had prescribed an appetite stimulant, but it wouldn’t make her hungry, only loopy, so she stopped taking it. 

“I thought once treatment was over, once I was home I would feel better because home is the place you feel better,” Shuck-Sparer said. “But I felt like I was getting worse.”

The cancer treatment had already affected her hearing, and she wears hearing aids now. If she doesn’t wear them, the world around her sounds muffled. When she went to East Tennessee Children’s Hospital and told them what was happening, she was prescribed a different appetite stimulant and had her start retaking her anti-nausea medication. 

Both helped her get back her appetite and weight, so much so that her parents lowered the dosage on the appetite stimulant because they felt she was too hungry at times, eating seconds and snacking in between meals, something she never did. 

She weighs 114 pounds now, which was what she weighed before she had cancer.

Trying to get back to normal

Her first few weeks back, her ankles were so weak she couldn’t lift her feet when she walked, instead dragging them across the ground. She wore leg braces that helped her supports her weight. 

She first started going to West for half-a-day, five days a week, while also balancing physical therapy and multiple doctors appointments. Even though she was in Memphis during her sophomore year, she completed the coursework needed to be a junior. 

“We tried to get you to pace yourself because we wanted you to have enough energy to go to school,” her mother, Cathy Shuck, said to her as she flipped through a notebook where she detailed the last year. 

She has started attending swim practice once a week and trying to get back to the shape she was in before. Her form is still good, she said. But she gets tired after swimming 100 yards. She used to swim 500 without much of a problem and was usually among the fastest swimmers on the team. 

“It’s kind of frustrating not being able to keep up with everybody else because I know that I used to be able to,” Shuck-Sparer said. 

But she loves the feeling of being in the water and pushing herself. She enjoys waking up sore the very next morning because that means she’s getting stronger.

And she has started doing other activities that resemble life before cancer: hanging out with friends, hiking with her family, going to the book store with her mom, discussing what she read in the book she finished for her English class with her father. 

All of them still worry if cancer will return. The survival rate for medulloblastoma that spread to the spinal cord is 60 percent, according to stjude.org. 

“That’s kind of scary but it makes me want to enjoy the now more,” she said. “If I have to go through it again, I’ll go through it again.”