By Justin Jarrett | LowcoSports@gmail.com
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.
— Joe Tokar | June 22, 2017
These are the first words Joe Tokar wrote on his blog, posted on one of the two most difficult days of his life.
She is Kyleigh Tokar. She wasn’t supposed to be here. She refuses to surrender.
Kyleigh suffered a massive stroke in utero and was born with no brain activity, no reflexes, no vision, no hearing, and no muscular ability. In the words of her doctors, she was a complete vegetable.
Now she is a junior at Beaufort High School and a key member of the school’s girls golf team. She will play for the Eagles in the Class 4A Lower State championship meet Monday in Conway, even as she once again fights for her life.
“God just put his hand on her and healed her,” Joe says of her miraculous recovery as an infant, “and I know that’s what he’s going to do with this.”
***
I’ve faced people pointing guns at me, dogs chasing me with bared teeth with death in their eyes, been surrounded by literal mobs of people that wanted to kill or beat me, had molotov cocktails thrown at me, been in many bar brawls and been in more than one knife fight. With all of that behind me, I have never been as afraid as I have been for the last few weeks.
— Joe Tokar | June 26, 2017
In early May, Kyleigh was in a car accident and had a minor back injury. After two weeks of visits to a chiropractor, the back pain was still lingering and the family was concerned about a bulge they suspected might be a dislocated rib. The chiropractor assured them it was not and referred Kyleigh to a doctor, starting a whirlwind of doctor visits, X-rays, and CT scans — and a biopsy.
On June 14, the dreaded call came. It was Ewing’s Sarcoma, a rare bone and soft tissue cancer found primarily in teenagers. The survival rate is about 70 percent and drops to 30 percent if it has spread anywhere else.
Kyleigh would start chemotherapy on July 10.
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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.
— Joe Tokar | Sept. 15, 2017
Perhaps the most devastating aspect of cancer is the fact that the most effective treatment involves pumping the weakened patient full of poison.
The Tokars have blazed a path between Beaufort and Charleston as Kyleigh undergoes chemotherapy, which has claimed her once flowing hair and caused severe swelling and pain in her hands and feet, but never dampened her spirit.
Even after a week with no chemo, though, when she usually feels at her best, Kyleigh recently was not feeling herself – tired, unable to focus, having trouble with her balance. Joe likened it to Capt. Jack Sparrow’s perpetually drunken stagger.
At her checkup at MUSC, the doctors searched for an explanation. Alana Tokar called her husband around 10 a.m. with an update.
“So they think she might have something wrong with her brain.”
And then she had to go.
It was 2 1/2 hours before she had a chance to call back, and the update did little to put Joe’s mind at ease. They had ruled out dehydration and ordered a CT scan of Kyleigh’s brain.
An hour later, another update. Kyleigh was being overdosed on neurotin, the drug she was prescribed to help with the burning sensations on her hands and feet. The doctors said they would work to find the right dosage to ease Kyleigh’s pain without causing her brain to shut down.
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Many say, ‘What can I do for you?’ I do not know. I know that cancer sucks. It’s an evil that should not be. Someday it will not be, but until then you can pray for my daughter, for Joe and for me.
– Alana Tokar | Sept. 24, 2017
The cancer and the chemo have weakened Kyleigh. She is rarely able to see her friends and can’t shake hands or accept hugs for fear of catching a bug her weakened immune system couldn’t fight.
Her swollen, blistered feet cause her great pain while simply walking, let alone playing golf, but she continues to give her best for her team.
But the chemo also has done a number on the tumor. Once measuring 57 cubic centimeters, it has shrunken to 15. Surgery to remove the mass was scheduled for Monday, but it was pushed back to Friday so she can play at Lower State.
Her surgeon will remove her seventh rib and parts of her sixth and eighth ribs in order to leave a half-inch clearance of non-tumorous cells. After surgery, she will have 22 more weeks of chemotherapy in hopes of eradicating the cancer for good.
The long-term prognosis, once grim, seems better by the day, buoyed by the Tokars’ faith and Kayleigh’s relentless optimism.
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Every morning when we wake up, we have the opportunity to choose what kind of day we are going to have. We can choose to be miserable, we can choose to be “tired,” we can choose to be in a bad mood. Or we can choose to smile, we can choose to be excellent in our endeavors, we can choose to be kind.
— Joe Tokar | Sept. 27, 2017
Kyleigh takes the biggest swing she can muster on the first tee at Sanctuary Golf Club, but she gets under it, sending a short pop-up into the fairway.
“Wheeeeee!,” she squeals.
Her golf game is not what it once was — she shoots 123 on this day in the Region 8-4A championship, helping the Eagles finish second – but she is ecstatic to be on the course. It’s a rare opportunity to interact with her peers and spend time with Joe, who is the team’s head coach.
Kyleigh enjoyed softball and loved cheerleading, but when she started playing golf in ninth grade, she knew she had found her sport.
“It’s laid-back, and I love coming out and playing with my dad,” she says. “I can’t really do that with cheer. I mean, if I begged him and came up with a sob story he probably would, but …”
She finishes the sentence with a glimmering smile that reveals so much about her character. Through it all, she’s still smiling.
“I was a positive kid before all this,” Kyleigh says, “but the glory of God is what keeps me going.”