Laini Hawkins arrived early for her volleyball clinic at Spectrum Sports Academy last week. While she waited, she watched the adult teams in the Roanoke Valley Volleyball Association in action, and when they took a break, one of the players asked 15-year-old Laini if she wanted to play.
Clad in her red Lord Botetourt High School T-shirt, black volleyball shorts and knee pads that couldn’t cover a hard-to-see 7-inch scar on her upper left leg, Laini took the court. Bouncing on white Nikes, she served two straight aces against the adults.
A few minutes later, she smashed a return over the net that dropped just inside the line. One of her new grown-up teammates gave her a high five. The kid was good.
The same time a year ago, Laini was in physical therapy three times a week as she recovered from surgery that removed a cancerous tumor — a myxoid liposarcoma, to be precise — from her leg. The operation in the summer of 2018 and follow-up treatments kept her from playing volleyball last season. At a time when she should’ve been preparing for her first year of high school, she was instead traveling between medical appointments in Roanoke and at Johns Hopkins Pediatric Oncology in Baltimore.
Now, Laini is cancer-free, excelling in her classes in the STEM program and other advanced classes, and she was back on the court for Lord Botetourt High School’s junior varsity volleyball team this fall. She has added one more task to her (and especially her mother’s) busy schedule: She wants to raise awareness and money for pediatric cancers.
The Hawkins family is sponsoring the Spike Sarcoma volleyball tournament on Nov. 23 at Spectrum, just off Thirlane Road. The tournament is open to any team that wants to register, with proceeds going to Carilion Pediatric Oncology and Johns Hopkins.
Initially, Laini hoped to raise $10,000 for pediatric sarcoma research. She has already passed that goal, thanks in part to a $10,000 donation from Amazon as part of the online giant’s Amazon Goes Gold program. The Amazon money will go to Carilion Pediatric Oncology, where Laini first received her diagnosis. Now, she wants to raise $20,000.
Laini said that she isn’t trying to make people aware that she had cancer. She wants to focus on other children, who are often misunderstood because their illness might not be obvious to others. She wants people to know what sick children are going through.
Having cancer “opened my eyes not only to my struggles, but to other people’s struggles,” she said. “You never know what’s going on with people’s lives behind closed doors.”
Something was wrong
During a volleyball camp in the summer of 2018, Laini noticed an odd lump on her upper left leg, just behind the knee. The lump didn’t hurt, so she didn’t let it keep her from playing.
“I thought it was just swelling,” she said. “I shrugged it off.”
A few days later, on June 25, 2018, Nickie Hawkins noticed the lump as her daughter played volleyball in the family driveway in Daleville. She knew something was wrong.
Carilion pediatric orthopedic surgeon Julie Zielinski removed part of the lump on July 2. Her mother; father, Kyle; and big sister, Ellie, 17, were there when she woke up from the surgery. After two lab tests on the tumor, the family told Laini the awful news. The tumor was malignant. She had cancer.
“I cried in my mom’s lap for a minute,” Laini said.
Liposarcoma affects connective tissues, often in the leg or thigh, as was Laini’s case. Although rare in the general population, and especially so in teenagers, liposarcomas are relatively treatable, and survival rates are high.
Laini didn’t know much about her type of cancer, except that it sounded like osteosarcoma, which she remembered from the John Green teen weeper “The Fault in Our Stars,” a best-selling young adult novel and hit movie.
Laini was seen by pediatric oncologist Violet Borowicz, and then was “kitchen-sinked,” as her mother called the procedures — chest scan, blood tests, bone scan and more. The tests were all negative, and in this case, “negative” is a good thing.
The Hawkins family opted to take Laini to Johns Hopkins, which has a sarcoma center that specializes in the rare cancer. In Baltimore, Laini saw more doctors and ended up having a second surgery to remove the remaining few centimeters of the tumor. That operation was July 31, 2018, just when she should have been in the middle of volleyball tryouts.
Her prognosis was good, so the family decided to forego radiation treatments and instead have Laini examined every three months to determine whether all the cancer had been removed. (Because of Laini’s progress, those tests are now every four months.)
“Her prognosis is quite good at this point, but there are reasons why we keep looking for years to come,” said Adam Levin, an orthopedic surgeon at Johns Hopkins who specializes in removal of rare tumors. He removed the remainder of Laini’s tumor during the second operation. “We like the opportunity to keep finding nothing.”
Laini started her freshman year at Lord Botetourt, walking with crutches and attending only half-days. An already stressful situation, her first week of high school, was made considerably worse by her physical condition. Her emotional shape might have been even worse.
“I had no time to process what had happened,” Laini said.
Even her friends and classmates weren’t sure what Laini was going through. Because she had no radiation or chemotherapy treatments, she betrayed no outer signs of being sick. In other words, she didn’t look like she had cancer.
“People were like, ‘Oh my gosh, why didn’t you lose your hair?’ ” she said. “One girl told me she heard I had died of cancer.”
Kids just didn’t understand.
To make things worse, she was unable to play her first season of high school volleyball, her favorite sport. She missed more than 60 days of school due to surgical recovery and trips to doctors. She played on a travel volleyball team last winter, even though she was advised against it.
“My doctor said ‘you shouldn’t go from zero to 100,’ ” Laini said. “That’s exactly what I did. It probably wasn’t the best decision, but I’m glad I did it.”
Awareness, support, compassion
Tenth grade has gone better than her freshman year.
“I feel great,” she said. “It’s been a long journey. Lately, I have been really, really happy.”
She played on the JV team and is starting the winter season with the Spectrum travel team. She has even come to appreciate the 7-inch scar, the only visible sign of what she has endured.
“I was insecure about it at first, but now I love it,” she said.
She still has years of tests to endure. If she remains cancer-free for five years, she will be considered cured of the disease.
She and her mother decided to host the benefit volleyball tournament, although now even the teenager admits that her mother is doing all the heavy lifting.
“She’s been a rock star,” Laini said, as she held her mother’s hand during an interview at a Daleville coffee shop.
Levin, the orthopedic surgeon who removed part of the tumor, called Laini “a remarkable kid,” and said that starting a fundraiser is evidence of her family support and her humility.
“She has an amazing personality and a determination not just for how she responded to the cancer diagnosis, but how she’s built something positive out of it,” he said.
In addition to the Amazon award, the family has raised another $5,000 from team entries and sponsors. Those dollars mean as much as the large Amazon award, said Nickie.
“As I worked my way through the fundraising process over the past three months I have been met with incredible compassion and support,” she said. “I’ve had the opportunity to connect on a very personal level with many area business owners who patiently waited while I dried my tears and handed out sponsor letters. A donation of $100 means as much to me as a donation of $10,000 because they were able to recognize that this tournament is about a survivor of childhood cancer taking action to bring awareness and funding for sarcomas to her community.”
Serving for a win
Last week, before she was invited to play with grown-ups on the Spectrum volleyball court, Laini approached a few players with slips of paper in her hand.
“I am sponsoring a volleyball tournament to raise awareness about childhood cancer,” she said, as she handed out the small slips with information about her tournament. She had survived cancer, too, she told the players.
Her mother stood courtside and let Laini do the talking.
“I tell other parents that she lost innocence, but she’s gained wisdom,” Nickie said.
Laini played a few minutes for one of the adult teams, showing youthful athleticism and skill. After a couple of slick returns and tips while playing in front of the net, Laini found herself as the server, just when her team needed one more point to win the set. She bounced the ball. Once, then again. She tossed it into the air, leaped. Boom.
She aced it.