Just keep swimming
Pixar’s 2003 film “Finding Nemo” about a fish with one small, weak fin who faces a series of hardships, but perseveres while repeating his mantra, “just keep swimming” has inspired a generation.
#AftonStrong is the story of Afton Wallace, a Vicksburg girl who was diagnosed with stage IV cancer last year, and the community that has rallied in support behind her.
“I kind of feel like Nemo because I have a bad leg,” said Afton, who has been swimming with the Vicksburg Swim Association since she was in fourth grade. “Luckily I don’t swim in circles.”
Afton’s mother Sheri Wallace said the family has said “just keep swimming” for years since “Finding Nemo” was released but recently the phrase has taken on a new meaning in the Wallace household.
Afton will graduate from Warren Central High School May 22, which is also the one-year anniversary of her diagnosis of stage IV Ewing’s sarcoma, a very rare, aggressive, childhood bone cancer.
“It’s a date that will live in infamy in our house,” Afton said.
The diagnosis came after months of trying to determine the cause of Afton’s lower back and leg pain, which began in late January or early February of 2014. The cause of the pain was determined to be the tumors on her pelvic bone, spine, liver, kidneys and perhaps other places.
By this time Afton’s condition was fading, she was immobile, her leg was becoming paralyzed and she was feeling pain in her face. Later doctors would find tumors in her head pushing on the nerves controlling her face and esophagus to be the cause of the facial pain.
Sheri said Afton’s competitive drive has helped her fight this battle.
“Just like with swimming — if she didn’t get her time she would swim it again, then she’d swim it again until she got her time,” she said. “When she first went to the hospital and was paralyzed, she immediately got up on the walker and was doing dips and whatever she could do.”
The tumors on Afton’s spine should have left her paralyzed, but she has fought through the pain, gotten up, and walked, Sheri said.
“I tell people as a parent you never want to see your child dig deep, and this year we’ve had to watch Afton dig deeper than I think most humans even find it possible,” she said. “Then something else is thrown at her and she finds the courage to dig deep and come up again.”
On the roller-coaster ride that has been Afton’s battle with cancer, things began looking up again in January this year when doctors declared she was in remission.
The soft tissue tumors were gone from the scans and the bony tumors on her pelvic bone and spine were not indicative of disease.
But as quickly as the cart reached the top of the tracks, it was on its way back down again. Afton found out on Feb. 11 that she had relapsed. The headaches and fainting she began experiencing were due to a significant tumor on her brain.
After reaching the bottom, the cart didn’t stop — March 24 scans showed the chemotherapy treatments were not working and Afton had numerous tumors growing throughout her body.
By March 31, Afton was experiencing excruciating pain in her upper back and a loss of function of her arms and hands, and doctors ordered emergency radiation the next day, not a very good April Fool’s Day joke, Afton’s dad Robert Wallace added.
Afton was admitted again April 3 for emergency radiation on her spine, and she began another round of chemotherapy, because the radiation ruled out participating in clinical trials any time soon. To participate in research Afton must have a break of 42 days between radiation treatment and 21 days between chemotherapy treatments.
Since Afton was diagnosed, she has spent 120 days in the hospital, undergone 45 radiation treatments and received 70 doses of chemotherapy.
Sheri said chemo has left Afton sensitive to smells, which is an issue at dinnertime at one of the hospitals.
“On every review I leave, I ask, ‘stop serving steamed cabbage,’” she said. “It’s bad enough they have cancer, then they’re served steamed cabbage.”
Sheri said she couldn’t imagine any cancer patient wanting steamed cabbage.
Regardless, Afton has stayed positive, something the family has talked about with the nurses who they said must be used to seeing that kind of fighting spirit in cancer patients, but the nurses said, “We do, but there’s only one Afton.”
“Which of course I think, but it’s another thing to hear others say it,” she said. “They said they talk about her in every board meeting and they’ve had her speak to other cancer patients to encourage them.”
Sheri said when Afton, who started band in sixth grade, tries to play music now it’s both therapeutic and frustrating.
Afton recalled a time she went down to the chapel in the hospital to play the piano.
“There’s this one song I have memorized and I will always be able to play it, and I tried to play it and it was just a mess up,” she said. “It’s just so frustrating because it’s just something that I knew so well, and it came so easily then I would mess up. With occupational therapy they want you doing things you did before, but it’s frustrating because you’re not as quick or you don’t remember as well.”
Afton said she has also been crocheting infinity scarves and donating them to a clinic for abused women in California as part of her occupational therapy.
Afton said she knows she has to keep fighting because her battle with cancer has become so much bigger than just her, as evidenced by her Facebook page (Afton Wallace #mymissionisremission), which now has more than 5,000, likes.
“When you have a video and it’s been viewed 5,000 times or it’s reached over 20,000 people, it’s kind of, … it’s very impactful,” she said. “It’s like wow, something that is happening in my life is — well people comment and say how much it impacts them and how much it inspires them, and it’s really cool for me.”
Afton said the feedback she’s gotten from social media reminds her to stay positive.
“It helps me a lot to be like ok, I need to put a smile on my face because this isn’t just about me,” she said. “I’m helping other people with my trials and my willingness to stay positive about this.”
Afton said part of it, too, is that no one wants to be sad all of the time.
“If you go around moping about how much my life sucks, ‘oh I have stage IV cancer, and everyone gets to go have a normal senior year’ you’re going to be miserable,” she said. “You have to take the happiness when you can. It’s easiest if you put a smile on your face. Even if it isn’t always genuine, it turns into something genuine.”
It could always be worse, Afton said
“There’s so many things I could be dealing with, and I’m not,” she said. “It helps you count your blessings a lot. You count your blessings a lot more if you’re in a good mood.”
Afton said the idea behind starting the Facebook page was to help keep her expansive family — which includes 58 cousins — up to date on everything going on.
The effort, combined with word of mouth, has led to keeping much more than just Afton’s family in the loop.
Robert said when Afton was at Vanderbilt, as many as 50 community members came up to see her, and when she was at St. Dominic’s there were around 150 visitors for Afton in just three days.
The list of community members who have stepped up to help out the family is exhaustive, including the Junior Auxiliary who has prepared a multi-course meal for the family and funded a trip to see the NCAA men’s basketball tournament, anonymous donors who have provided transportation in their private planes and an online platform that has been set up to schedule bringing meals to the family, which is already booked through June.
“This is the thing that’s really crazy, we have not asked for any of this,” Robert said. “All of this has been just given. We are very grateful; this is just astonishing. The community has been so open and warm-hearted about all of this.”
The community has also made sure Afton’s siblings, Kaylynne, 16, Abigail, 13, Scott, 12, and Katie, 9, have been well taken care of.
Afton turns 18 this month, and the “floodgates will be open” as far as the clinical trials she will be able to participate in, Robert said.
Sheri said even though Afton is battling a childhood cancer, turning 18 will be a huge benefit.
“It’ll actually change the types of research she can participate in,” she said. “We’re actually at the point where she may be going into clinical studies where that will be her only resource left of what could save her life.”
Other than the stage IV cancer, Afton is a lot like other high school girls. She still had to pass her classes, take her ACT and apply to college.
Afton’s classes, AP literature, AP government and AP calculus, were completed with much assistance from a robot.
“It was basically like iPad on top of a Segway, and I could call it from my iPad,” she said. “If I were at the hospital or if I were at home I could call in and move around and there were controls and everything and I could be a part of class.”
With an ACT score of 33, which falls in the 99th percentile in the nation, Afton has been named Warren Central’s Star Student.
Sheri said Afton took her ACT when she was in the middle of chemotherapy treatment.
“She had to do chemo every 14 days,” she said. “The first time she’d be in the hospital for seven days, then she’d be home for five to six days, then she’d go back in for two-three days, and it was during that time that she took the ACT. We were pretty proud of her.”
Sheri said they later found out Afton should have been given an untimed test and they thought she could have made a higher score, but Afton was not interested in taking the four-hour test again.
With that ACT score and her GPA, Afton could have gone to any school in the country, but still she was excited when she found out she was accepted and granted a full tuition scholarship to her dream school: Brigham Young University.
“I’m true blue, through and through,” she said. “I knew the fight song, that was like the second song I ever learned. It’s the real deal.”
Sheri and Robert both got bachelor’s and master’s degrees from BYU, and Robert’s father taught there and his grandfather was an administrator. On the other side of the family, Sheri’s father is a vice president at the university.
“All of my cousins have gone to BYU or BYU-Idaho,” Afton said of the 14 cousins who have attended the universities before her.
Sheri said despite the family links, Afton’s admittance was by her own merit.
“The one thing about BYU that most people don’t understand is that it doesn’t matter if you have connections or if you donate money. You could donate millions of dollars, but if you don’t academically qualify to get into BYU, you’re not going,” she said. “That’s why we’re always really happy when we have an adequate sports team. They have a panel, that is truly a blind panel, and you’re not going to get in unless you qualify.”
Robert added the university is ranked number two only behind Harvard in the number of admitted students who attend, and the family is currently making arrangements for Afton to begin attending school in the fall.
But for now, Afton is still a teenage girl in Vicksburg who has teenage girl things to worry about,f like her hair or lack thereof.
“When I first shaved, we did the whole #BaldIsBeautiful kind of thing, and I kind of took it on because there are so many insecure girls out there that are bald, and they feel so self conscious about having to be bald,” she said. “I can be a person for someone who doesn’t feel comfortable being bald, then I became comfortable being bald.”
Afton said she doesn’t wear make-up and it’s never really been her thing to spend a lot of time getting ready, which sort of parlayed into not wearing a wig.
“I thought it would be cool to get one for prom since I was getting dressed up anyway,” she said. “We got it, then I felt like a cabbage patch doll. It wasn’t really my original color, and it didn’t feel natural, and I had just spent 10 months being bald.”
Sheri said for Afton, losing her hair was much more painful than she expected it to be.
“She was a teenage girl with long, beautiful, dark, almost-black hair and she loved and identified with her hair,” she said. “After it happened she said, ‘I’m sorry that you would identify with something like that. It’s so superficial. My hair isn’t who I am. I need to decide who I am without this.’”
When Afton was getting ready for senior pictures for the yearbook all of her friends were texting about having bad hair days asking how they should style their hair, Sheri said.
“It’s their life, and they don’t understand the significance of it,” she said. “Those are moments where it’s like I have to decide, I can either be really offended by this or I can just take it as what it’s intended to be.”
Sheri said they’ve had to realize you can only experience what you’ve experienced.
“I’m more petty than she is, but I think she finds a way to be sympathetic in those situations, when I’m like, hmm, wow, ok,” she said. “She realizes that they can’t understand and they don’t know.”
Afton said it’s a hard situation to be in.
“I don’t want to be that friend that’s like ‘oh there you go complaining again,’ but I also still want to be their friend that they can still confide in me rather than ‘oh let’s not talk about it with Afton because she has cancer and she has it so much worse,’” she said. “It’s so hard because you have that ‘seriously?’ at the same time in the back of your mind. You have to put things in perspective, and that’s a lesson we’ve had to learn.”