Making a difference by being different
Making a difference by being different. USA Paralympics sitting volleyball player Jillian Williams strives to live by that principle every day, and it’s a motto she will carry with her in Tokyo at the 2020 Summer Paralympic Games that begin Aug. 24.
Williams is a patient of Aaron Sugalski, DO, a pediatric oncologist with the Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center, and of Valerae O. Lewis, MD, an orthopaedic oncologist with The University of Texas MD Anderson Cancer Center. Four and a half years since her surgery and last chemotherapy treatment, she remains free of cancer on follow-up scans and is nearly at the all-important five-year survival milestone.
The bubbly Williams maintained her optimism as she coped with more than two dozen rounds of therapy infused at University Hospital in San Antonio. University Hospital is part of University Health, the Mays Cancer Center’s pediatric cancer clinical partner.
“Because most of my treatment was inpatient, I got to know a lot of the physicians who were on call over the weekends, which was nice,” she said.
Williams is from Odem, a small town near Corpus Christi. At 5 foot, 10 inches, she was “decently tall” for playing the net in volleyball. “I had a really high vertical jump, which was nice, and I was middle hitter on the front row,” she said.
After high school, she enrolled at Texas Lutheran University in Seguin and joined the volleyball team. Life was going well, but she began having severe pain in her left femur. Perhaps it was just a tear in the kneecap, she thought. The pain worsened, and tests yielded an unsettling diagnosis: Ewing sarcoma, a bone and soft tissue cancer that primarily affects children and adolescents.
It was February 2016.
“We found Dr. Sugalski when I was diagnosed, and it was the best thing we could have ever done,” Williams said. “He is amazing, and the whole team is, with the work that they do.”
First, a complex surgery
In planning her treatment, Dr. Sugalski contacted Dr. Lewis at MD Anderson in Houston, given her multidisciplinary team’s unique expertise in rotationplasty, a surgical procedure to remove the cancer, preserve mobility and offer patients improved quality of life.
The knee and adjacent parts of the leg are removed to decrease any chance of cancer recurrence. Next, the remaining lower leg is rotated 180 degrees and attached to the upper leg. The foot, also rotated, is positioned exactly where the knee used to be, with the toes pointing backward. The ankle functions as the knee joint, and the foot fits into a leg prosthesis.
Shortly after the surgery, Williams returned to the care of Dr. Sugalski in San Antonio and began 11 months of chemotherapy.
“I would go into the hospital for three days and then be out for a week, and then go one day in and be out for a week, and then go in for six days and be out for a week, and then start over,” she said.
Following all of her chemotherapy appointments in San Antonio and regular follow-ups at MD Anderson, she rang a ceremonial bell to signal the end of treatment in January 2017. After returning to Texas Lutheran for a semester, she was invited to begin training with the U.S. national team in sitting volleyball.
A second life on the court
In treatment, there is time to think, to meditate. Williams read an article in Sports Illustrated about the 2016 Paralympics in Rio de Janeiro, Brazil, and one of the women on the USA sitting volleyball team had rotationplasty, too. “I was amazed, because I had thought I would never play volleyball again,” Williams said.
She messaged the player, who was competing in Rio, and learned who to contact about team selection and training. A new dream took shape.
“I remember lying in the hospital bed having chemo, and I would tell my nurses, ‘I’m going to play in the Paralympics one day,’ Williams said.
She went to a camp in May 2017 and was assigned to the USA Volleyball A2 program, which is the feeder program to the national team. “I was in that program for about three months and then was asked to move up to the national team,” Williams said. “One of the recommendations was moving to Oklahoma to train with them.”
Williams did so, completing college at the University of Central Oklahoma in Edmond. She has competed in every major event since then, including the Parapan American Games and the recent Golden Nations League tournament in Assen, Netherlands. The team is undefeated this year and top-ranked in the world.
“Now I’m headed to Tokyo,” she said.
Thankful and appreciative
Williams, 24, looks back on the people who have helped her get to this point. “I think more than anything, I’m just so grateful,” she said. “I refer patients to Dr. Sugalski, and I refer people to MD Anderson for surgery. Dr. Sugalski and Dr. Lewis, and their teams, saved my life. They supported me and made sure I was healthy enough to be able to continue to compete and do anything I’ve ever wanted to do.”
These days, in addition to traveling and playing with the U.S. sitting volleyball national team, Williams is a representative and clinical specialist with Stryker Corp. She inputs data into robots that help surgeons correctly align replacement knees and hips.
On Nov. 14, 2020, she was married to Kyle Coffee, a firefighter with the Harris County Hazmat Team. They live in Houston. Amid the pandemic, the wedding was held outdoors at her family’s ranch in Oakville between San Antonio and Corpus Christi. “I always said I wanted to get married there, so we did,” she said.
Now, Tokyo is calling.
“I’ve watched athletes standing on the Olympic platforms, gold, silver and bronze,” Williams said. “I am going to envision us winning gold because we have so much potential to be able to do that. I get emotional hearing the Star-Spangled Banner played at small tournaments, and I can only imagine what it will be like on the Paralympic podium. Knowing my family is at home getting to watch that is just really cool.”
Not many people are diagnosed with Ewing sarcoma, a cancer under study at UT Health San Antonio’s Greehey Children’s Cancer Research Institute. Not many choose to have rotationplasty, either.
“I had a blog when I was sick, and it was called Jillian’s Leap Through Cancer, and one of my quotes that I said in the very beginning was, ‘I want to make a difference by being different,’” she said.
“I think making a difference by being different is the biggest thing I try to live by every day.”
Everyone at the Mays Cancer Center, University Hospital and MD Anderson extends best wishes to you, Jillian Williams, at the Tokyo Paralympics!