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Sawyer’s Story: Little Girl, Big Heart

She’s The Little Girl with a Big Heart!

Sawyer Perkins breezes into the Chick-fil-A on Brook Road with the energy of any vibrant 7-year-old. The silver bursts on her black velveteen dress and the black sequined cat-eared headband framing her pixie hairdo sparkle as the sun hits them.

Looking at Sawyer, you would never know she has an aggressive form of brain cancer (stage III anaplastic ependymoma), something she’s been fighting for the last two years. The only give-away is a small spot on her head where the hair hasn’t grown in from chemo and a slight limp, a side effect of her second surgery.

A bit timid about the interview, Sawyer scoots into a booth next to her mom, Jamie, and nods when her mom suggests some ice cream to ease the moment. The ice cream would be better with an order of French fries, Sawyer hints. Ice cream is one of her favorite sweets, along with cupcakes and Fun Dip (yes, that candy powder).

When the ice cream and fries arrive, she politely offers up a fry and then grabs one for herself. She scoops into the bowl of ice cream, and warming up to me quickly now, explains in a soft-but-playful voice that she met her boyfriend, 8-year-old Alex, at St. Jude Children’s Research Hospital in Memphis when she was receiving treatment.

Alex had beaten cancer a while back and was at the hospital visiting his brother, who was fighting cancer. Sawyer and Alex hit it off. “I asked him if he wanted to be my boyfriend and he said yes,” she says, her large baby-doll eyes beaming with pride.

Sawyer Perkins visits Candice Smith at the NBC12 studio in Midlothian. The two petite dynamos were fast friends.

Candice Smith, traffic reporter for NBC12, knows how sweet and spunky Sawyer is. “She hasn’t let the cancer affect her,” she says. Smith heard about Sawyer and her fight last year when she was reporting on a healthcare fundraising event to support the Hanover family. After meeting last spring, the two became fast friends. “I was drawn to her. There was just something about her that pulled on my heartstrings,” Smith says.

Since then, Smith has attended a few fundraising events for Sawyer as well as the youngster’s birthday party. She went to Sawyer’s house when local firefighters built her a playhouse, and the two played together. When Sawyer comes to the television station, “we play hide-and-seek from Sawyer’s mom,” Smith says. “Sawyer got to try doing the weather and traffic with the green screen, and she was a natural.”

While at St. Jude Children’s Research Hospital, Sawyer starred alongside celebrity supporter Jennifer Aniston in a PSA to promote the St. Jude Thanks and Giving campaign.

Smith and Sawyer are kindred spirits, both bursting with energy and enthusiasm. “When we meet, we run up to each other and hug. It’s an instant connection,” Smith says.

Cancer affects people of all ages, but it’s difficult for Smith to see such a lively little girl going through this. “I wanted to help her in any way that I could. And she helps me in a way she doesn’t really know,” Smith says, fighting back tears. “I’m going to continue to do as much as I can for her. It just sucks that this has to happen to her. Cancer sucks.”

Life changes in five seconds

Up until Saturday, April 23, 2016, Sawyer was a healthy 5-year-old. Earlier that week, she had vomited a few times. After noticing that Sawyer’s eyes were crossed inexplicably, Jamie bundled up her daughter and took her to the emergency room at Bon Secours St. Mary’s Hospital where doctors performed a CT scan that showed two brain tumors.

Jamie Perkins with Sawyer with all the kids: Ace, Dylan, Jamie in the middle, Madison, and Sawyer. “My family has been in two different cities for the past two years. I’m 720 miles away from the rest of my children,” says Jamie. “It’s heart-wrenching.”

“I felt in my gut that something was wrong when I took her to the ER,” Jamie says. “It was so quick. They asked us to step out of the room.”

Minutes later, the ER doctor came into the room accompanied by an oncologist and chaplain. They walked Jamie down the hall. “I knew it was going to be bad when I saw the oncologist and chaplain, but I didn’t realize it would be as bad as it was,” she says. “Those five seconds seemed like a lifetime. And our entire world changed.”

They rushed Sawyer and her mom in an ambulance to University of Virginia Medical Center where an MRI was performed. They operated the next day. Surgery lasted nine hours and doctors removed both tumors – one of which was very large. About a week later, the pathology showed anaplastic ependymoma, an aggressive form of brain cancer.

“It’s a day and a moment that is forever ingrained in your brain,” Jamie says. “I think about it every night.” The situation is surreal, she adds. “It’s often hard for me to fathom that this is my life and my daughter’s life.”

Specialists at UVA referred Jamie to different clinical trials. St. Jude was conducting one of the trials they suggested, and within a few weeks, Sawyer was accepted into a clinical trial at St. Jude.

Sawyer and Jamie spent all summer at St. Jude where Sawyer received thirty-three rounds of proton radiation. She did not receive chemotherapy at that time. “The hardest part was the fact that Sawyer had to be sedated every time,” Jamie says.

Sawyer was able to come home at the end of the summer on a wait-and-watch basis. She returned to St. Jude every three months throughout the winter for scans, and still travels there every six weeks for scans. Last month, she was filmed in a St. Jude public service announcement with Jennifer Aniston and did a photo shoot with the popular star.

During Jamie and Sawyer’s stay at St. Jude in March 2017, doctors discovered a tumor had already grown in the same spot that had been radiated. Sawyer had to undergo another brain surgery the next day to remove the tumor.

Sawyer bounced back after the first surgery in 2016 very quickly. “Her eyes went back to normal and she was walking in two days,” Jamie says. “We were home in a week and a half.” This follow-up surgery, however, was more difficult for her, as surgeons had to operate along the middle of her brain. “She had a couple of seizures after the second surgery,” Jamie says. “She also has trouble walking. It took her longer to get back to her regular energy level.”

Two of the hardest aspects for Jamie to deal with are not being able to work – she had to give up her job as an algebra teacher at The Academy at Virginia Randolph to care for Sawyer – and raising her family in two different cities. St. Jude takes care of housing and transportation for her and Sawyer, as well as for providing food vouchers when they are in Memphis. “Anytime I have to bring my other kids along to St. Jude, we have to pay for that,” she says.

She is also trying to get Sawyer accepted into different clinical trials that are not covered by insurance.

During the second surgery, doctors noticed three other spots, but couldn’t tell if they were tumors or scarring from the first surgery. “They did four rounds of chemo at St. Jude this past summer,” Jamie says, adding that Sawyer received those treatments from March through August.

Over the holidays, Sawyer hosted a collection box-wrapping event for Mason’s Toy Box, an organization Kelly Kassay (left) founded to help Central Virginia families with kids who will spend the holidays in the hospital.

Doctors have been straightforward with the family throughout the process. “In March, when she relapsed, the doctor didn’t think she would make it through the year,” Jamie says, adding that Sawyer’s prognosis is a 17 percent chance of survival five years post-diagnosis. “Last time, the doctor was shocked when she was still stable. Maybe she will be our miracle girl. We never give up hope.”

This summer, Sawyer suffered eight seizures. “They didn’t think she would make it through the night,” Jamie recalls. “She spent two weeks at VCU. They didn’t know what caused the seizures, but she is now on medication for them.”

After talking with doctors, the family chose not to do more radiation because it had been less than a year from Sawyer’s original round of radiation. “If she had more radiation at that point, it could have affected her quality of life – her IQ and her liver functions,” Jamie says.

Making the decision to forego radiation treatment was difficult for Sawyer’s family. “We obviously didn’t want tumors to grow, but we didn’t want to affect her quality of life and not have her be able to be the same little girl we have known,” Jamie says. “St. Jude is very supportive of our decision.”

All the while, Jamie continues to question whether there were any red flags that would have alerted her to Sawyer’s condition sooner – before the vomiting and eye-crossing that landed Sawyer in the ER. She reads extensively about brain tumors to try to find the answer. And, she has found something that may be a correlation. “Sawyer was a happy baby, but when she was about three and a half, she started becoming more emotional, more temperamental. She would freak out with too many questions. I can see where her personality changed,” she says. “Once the tumor was removed, she was calmer again.”

Support from friends and family

Spending time away from the family – Sawyer has a 12-year-old sister, Madison, and two brothers, Dylan, nineteen and Ace, ten – has been difficult for both Sawyer and Jamie, a single mom who co-parents her children with her ex-husband. “My family has been in two different cities for the past two years. I’m 720 miles away from the rest of my children,” she says. “It’s heart-wrenching. It’s been a long, hard two years.”

Between and during tests and treatments, Sawyer has fun with her “cancer warrior” friends and plays on her tablet.

Her older children knew something was wrong after their sister went to the ER. The night before her first surgery at UVA, they came to the hospital. “As softly as we could, we told them they had to say goodbye just in case. We didn’t know if Sawyer would make it through the surgery,” Jamie says.

Now that Sawyer has been doing better, the kids are “back to fighting like regular siblings do,” jokes Jamie, noting that despite Sawyer’s health challenges, the family is a lot like other families.

Sawyer has captured the heart of Beth Cully, her first grade teacher at Pearson’s Corner Elementary in Hanover County. “She has become part of our family,” Beth says.

Kindhearted and caring, Sawyer always thinks about other children in her class. “She doesn’t think about herself,” Beth says. “She is just so compassionate with others.”

Beth remembers asking her what she wanted for Christmas, and Sawyer replied, “I would like to spend a couple of days with you. She doesn’t even think of things she wants,” Beth says. “She thinks of quality time with people. She has stolen my heart.”

A real girly-girl, Sawyer loves to play dress-up, and Beth has hundreds of costumes at home because her daughter is a dancer. Sawyer would dress up as the snow fairy, and Beth and her daughter would be fairies as well. “She also likes to play mermaids,” Beth says.

Sawyer and her mom Jamie travel to St. Jude Children’s Research Hospital in Memphis every six weeks for brain scans and treatment for stage III anaplastic ependymoma.

Sawyer has never used her cancer as a crutch in Beth’s class. If she didn’t feel well, she didn’t let it show. “She’s not a child who wants any attention brought to her for that reason,” Beth says, adding that Sawyer has been open and honest with other students about her cancer.

Sawyer’s positive attitude has had a real effect on Beth. “She has totally changed my life. Her positive attitude goes a long way. It will help her overcome this,” she says.

One day at a time

Three words that describe Sawyer? Sassy, feisty, and funky. “She likes to make everybody laugh. She’s playful,” Jamie says. “I know why God gave her that spirit, with everything she has had to go through.”

Always positive, Sawyer likes to reminds her mom that tomorrow is another day, telling her mom: “We can get through this!”

Sawyer and her mom fully understand what families go through when a child is sick, and they both want to give back. Over the holidays, Sawyer hosted a box-wrapping event for Mason’s Toy Box, an organization that collects new, unwrapped toys from businesses and delivers them, along with Santa, to children in hospitals in Central Virginia.

“Sawyer and community volunteers helped wrap one hundred donation collection boxes to put in businesses that night,” says Kelly Kassay who founded the organization to help with her own grief after her son passed away from a rare childhood cancer. “She wasn’t feeling well that night, but she still helped. She is quite a little miracle.”

Sawyer has finished her ice cream and fries, and has scooted over to the play area. She crouches and maneuvers through the twists and turns of the colorful equipment. At each turn, she looks at her mom, bursts into a smile and gives her a thumbs-up.

Sawyer has lost a couple of her friends at St. Jude to cancer. “It’s been really hard,” Jamie says, waving back at Sawyer. “She talks about playing with them in heaven. She talks about heaven a lot. Spiritually, she is okay.”

Jamie acknowledges that to make this journey with her youngest child, she has had to draw a lot of her strength from Sawyer. She looks at her daughter, smiles warmly, and says, “I follow her lead.”

photos:  Loren Rosado, friends and family

An award-winning writer based in Richmond, Joan Tupponce is a parent, grandparent, and self-admitted Disney freak. She writes about anything and everything and enjoys meeting inspiring people and telling their stories. Joan’s work has appeared in RFM since the magazine’s first issue in October 2009. Look for original and exclusive online articles about Richmond-area people, places, and ideas at Just Joan: RVA Storyteller.
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