story by Carol Lauvray photos by Susan DeLoach
Kyleigh Tokar has faced and overcome greater challenges than most people encounter during a lifetime—and she is just 16 years old.
The Beaufort High School junior beat all odds at the beginning of her life, surviving a massive stroke while in utero and subsequently being born without brain activity, reflexes, vision, hearing or muscular ability. Defying her doctors’ early prognosis, Kyleigh has grown into an active, happy teenager who excels in school and who loves sports like golf and bowling, as well as camping and board games. Her parents, Alana and Joseph Tokar, credit God for Kyleigh’s miraculous recovery as an infant.
Last June, Joe Tokar started writing a blog about his daughter Kyleigh. His first post on the blog reads: “What can I say about her? She loves the Lord and is amazing, wonderful, happy, vibrant and incredibly caring. She is an incredible young woman that has changed not only my life, but the lives of so many people she has come in contact with. She is quite literally a gift from God…”
Facing Another Challenge
Joe created the blog to document the latest challenge that Kyleigh is facing—a diagnosis of Ewing sarcoma (a rare type of cancer that occurs in bones or in the soft tissue around bone), a cancer that most often afflicts teens and young adults. The survival rate for localized cases of Ewing sarcoma is about 70 percent; if it spreads to other sites in the body, the survival rate drops to 30 percent.
Last year, in May, while she was driving, Kyleigh was hit by another car, an event that her dad Joe believes was a gift from God to help the family discover her cancer. As a result of the accident, Kyleigh suffered a minor back injury so she visited a chiropractor. Two weeks later, her back still hurt so her mom Alana asked the chiropractor to look at a bulge on Kyleigh’s rib. The chiropractor advised them to have a doctor see Kyleigh immediately. So began a flurry of doctor appointments, tests (x-rays, a CT scan and an ultrasound), and a biopsy on the mass on Kyleigh’s rib. On June 14, 2017, the family received the dreaded call from the Medical University of South Carolina (MUSC) in Charleston with the diagnosis of cancer.
Kyleigh’s doctor at MUSC wanted to begin her chemotherapy as soon as possible, during the last week of June. On June 26, 2017 Joe posted in the blog saying that Kyleigh had a different plan, “…my wonderful daughter, so confident in Christ, says she wants to go to camp for a week before she starts treatment.” As a result, Monday, July 10, 2017 was rescheduled to be Kyleigh’s first chemotherapy treatment. The week before her treatment began, Kyleigh decided to have her long, flowing tresses cut into a short style so she could donate her hair to Locks of Love.
Kyleigh’s treatment plan is rigorous: Week 1 she spent two days in the hospital; Week 2 she was an outpatient; Week 3 she stayed in the hospital for 6 days; Week 4 she was at home; then the pattern repeated through Week 14. After a period of time off chemotherapy, on October 20, 2017, Kyleigh had an operation to remove the tumor and all or part of three ribs, but through it all her spirit and determination never waivered. Just the day before her surgery, she played 18 holes of golf in Conway, SC as a member of the Beaufort High School Eagles girls golf team in the Class 4A Lower State championship meet, and the team qualified to go to the State playoffs. After Kyleigh’s operation and four weeks of healing, she resumed her chemotherapy regimen the week before Thanksgiving, beginning another 22 weeks of treatment. Kyleigh’s goal is to complete her treatment before the end of May 2018, so she and her family can take their annual Memorial Day camping trip to Clarks Hill Lake.
Everyone who has experienced cancer firsthand as a patient or as a caregiver understands the toll that the disease takes, in terms of enduring treatments and side effects, pain, angst and the loss of freedom. Since the time that Kyleigh began her treatment in July 2017, she has experienced side effects including fatigue, nausea, vomiting, diarrhea, fevers, pain and swelling in her hands and feet, mouth sores, difficultly walking and focusing her attention, and damage to her heart. An avid golfer and excellent student, Kyleigh has missed participating regularly in sports, attending school, and spending time with friends and family members, to limit her exposure to germs because of her compromised immune system.
In September, after 2 ½ months of Kyleigh’s treatments, her mom Alana posted on the blog, “…I mourn for the joy my daughter used to have when she was driving with her friends to go to the beach, to school to see her favorite teachers, to run to the grocery store to get something for her mom. I mourn for my daughter when I see her in so much pain because the chemo is causing her hands and feet to swell and blister. I mourn for the loss of my relationship with my husband, friends, co-workers and family members because Kyleigh’s counts are too low to visit with them…” Also in September, her dad Joe posted, “Through all of this Kyleigh doesn’t complain, doesn’t whine, just faces it with strength and the conviction of her faith. At the same time that I want to protect her, and hold her, and make all of this go away, I admire her for her spirit and her character.”
After nearly seven months in treatment, at the end of January Kyleigh posted on the blog herself announcing great news: “I am CANCER FREE! Just going through consolidation to make sure all the teeny tiny microscopic cells have all been found and KILLED. When first diagnosed with cancer my world broke for just a few seconds and that’s when God gave me the Bible verse that you see on my dad’s blogs, Philippians 4:13: ‘I can do all things through Christ who gives me strength.’ ” After her treatment concludes this May, Kyleigh will continue to make regular visits to MUSC for checkups for the next five years. If the cancer does not return by the time she reaches the age of 30, she’ll be considered cured.
Looking Forward to Life
Now Kyleigh and her family are focused on completing her treatment by the end of May in time for their Memorial Day camping trip. Kyleigh is also making longer-range plans for her future. She is on schedule to graduate from Beaufort High School in June 2019 and afterward, she would like to attend Southern Wesleyan University in Central, SC to earn her degree in business. She’s already started her own business from home selling LuLaRoe clothing.
A few minutes after Kyleigh, Joe and Alana Tokar were interviewed for this article on a sunny, warm Beaufort afternoon in late February, Kyleigh and her dad stood on the first hole at Sanctuary Golf Club on Cat Island, teeing off to play a few holes of golf. Kyleigh Tokar embodies spirit, fortitude and optimism in the face of life-threatening challenges, and she does this with unusual grace. Kyleigh truly believes that her grace to face these challenges is a gift from God.