HOW TO DONATE
ONLINE: The Cure Starts Now Foundation Kyleigh Wright Heroes Page: thecurestartsnow.org/heroes
EVENT: Moose Benjamin Golf Outing with proceeds benefitting The Cure Starts Now Foundation
When: Sept. 26
Where: The Mill Course, 1515 W. Sharon Road, Cincinnati
To play or donate: Email Jason Ott at Jason.Ott@schawk.com
When Hamilton resident Karen Wright first heard the story of Lauren Hill, the Mount St. Joseph freshman who lived her dream of playing college basketball despite battling brain cancer, she and thousands of other parents asked themselves the same question:
What would I do if it was my daughter?
Tragically, a few weeks later she found out.
Leaving her grandmother’s house on Thanksgiving Day, 13-year-old Kyleigh Wright collapsed in seizure. For the next two weeks the Garfield Middle School eighth-grader endured a CAT scan, a spinal tap, an EEG and multiple blood tests, all of which were inconclusive.
Finally on Dec. 9, a biopsy delivered the devastating answer. Kyleigh had Glioblastoma, a cancerous brain tumor. It was Grade 4, the most advanced kind.
“At first it was like, ‘OK, what do we need to do to fix this,” Karen said.
The tumor was too large to operate on, so the doctors started Kyleigh on chemotherapy and radiation. But after she absorbed the maximum doses medically allowed of each treatment, it was clear nothing was working. And on Feb. 11, doctors told Karen the tumor was incurable.
Hearing the news was only half as hard as having to tell her husband, Roger, later that night.
“He took it really bad,” Karen said. “He has a lot of anger because we weren’t told right away. I feel like they gave us false hope in the beginning, and even going through treatment. It had no chance of curing her, only extending her life.
“Had we known,” Karen continued, then paused.
“Had we known, we could have done things different,” she said. “Her life span would have been shorter, but she would have been Kyleigh.”
Seeing the change has been one of the hardest parts for Karen and Roger.
Knowing their 14-year-old little girl will never drive or graduate high school or get married is difficult enough, but watching the treatments and medicines transform their happy, spunky, social teenager into a quiet, hurting soul who is incapable of comprehending jokes or sarcasm has been heartbreaking.
“It has sucked the spirit out of her,” Karen said.
The worst part of all is watching Kyleigh suffer, which is why Karen is telling her story.
“I want people to know what cancer really does to families, and what children and their families really go through,” she said. “Sometimes it’s not discussed because people want to protect what their child’s going through and not let everyone know the nastiness it does to them. It’s just not really talked about, but I want to get the awareness out there in hopes of raising more funding.”
Unable to walk, or even stand, Kyleigh has been in a wheelchair for the last few months. The steroids used to keep her brain from swelling and causing seizures have ravaged her body with stretch marks and led to her becoming diabetic. They also cause heartburn and acid reflux, continuing a cycle of taking medicines to offset other medicines — more than 40 in all — to treat all of the issues.
Support with shears
Not a night goes by where Kyleigh doesn’t wake up crying from pain, or sadness, or fear, or loneliness.
“She cries a lot,” Karen said. “We all do.”
There were a lot of tears the day Karen shaved off all of Kyleigh’s hair, an experience that would traumatize any teenage girl. With both Karen and Kyleigh crying harder with each pass of the razor, Kyleigh’s older brother, Quentin, walked in to see what was going on. He walked right back out and left the house.
Quentin came back about an hour later with his head shaved, which made Kyleigh cry again. And laugh.
“That meant so much to me,” she said. “But he looked like an alien.”
Roger, like any loving father, said he wishes he could do more than just show support with shears.
“I wish I could take the cancer from her and give it to me,” he said. “I’d do it in a second.”
That causes Kyleigh to cry again.
“What’s wrong, baby?” Roger asked her.
“That’s just so nice of you,” she said.
Karen said Kyleigh apologizes almost as often as she cries, saying she’s sorry her parents have to take care of her and be home all the time.
“I just tell her ‘I’m here because I love you. I take care of you because I love you,’” Karen said. “That’s what parents do.”
Lauren Hill’s mom knows the misery of illness
The difference in age and rapid acceleration of the tumor may make Kyleigh’s struggle sound different from the one Lauren Hill faced. But Lisa Hill, Lauren’s mom, said that’s not the case.
“People saw Lauren’s tenacity and her courage and her motivation and all that kind of stuff as she continued to live and do the things she loved, but they never saw the misery,” Lisa said. “These kids are miserable. It’s mentally and physically and emotionally devastating for them to go through this, not to mention how difficult it is just knowing they can’t be normal teenagers.
“It emotionally drains them,” Lisa added. “And you’re left to pick up the pieces and be there for the emotional breakdowns. It sucked.”
Hill, Wright families connect
Through a mutual friend of the Wrights and Hill’s MSJ coach Bear Benjamin, Lauren came to know Kyleigh and followed her story while proudly wearing one Kyleigh’s KBrave bracelets.
The two never met in person before Lauren passed away in April, but Benjamin stayed close with the Wrights and a couple of weeks ago arranged for Kyleigh and her family to visit the Cincinnati Zoo with special access into a couple of enclosures where Kyleigh could feed the elephants and her favorite animals, the giraffes.
When Bear mentioned the trip to Lisa, she asked if she could come along and meet the family.
“It was a wonderful surprise,” Karen said. “We connected over our daughters, and it was a beautiful day. Our hearts will always be intertwined.”
The zoo trip was one of a few memorable experiences people have given the Wrights since Kyleigh’s diagnosis. The Make-A-Wish Foundation sent them to Hawaii. The Newport Aquarium provided a private tour with behind-the-scenes access. They’ve been to the Pilot House for a Reds game. And last week Kyleigh not only got to see her idol, Taylor Swift, in concert. She got to visit with her before the show in a private room where Swift gave Kyleigh an autographed guitar.
An aspiring singer before the diagnosis, Kyleigh has been a huge Swift fan for years. She said she loves all of her songs, but one has separated itself as her favorite through her ordeal, “The Best Day.”
Asked what’s been her best day, Kyleigh said, “Any day I get to spend with my mom.”
Since the diagnosis, that’s been every day. Karen quit her job to become Kyleigh’s full-time caregiver, and she can count the hours she’s been away from her in the last seven months on one hand.
“Sitting there and watching Karen be so patient with Kyleigh while she was in pain at the zoo, I wondered if that’s the way I looked to everybody else,” Lisa said. “It was a really hard day just knowing the possibilities of what might be ahead for them. Watching her family go through that is really tough. But I was glad I went and spent time with them. It’s a small network of people who have walked in those shoes.”
Research funds for pediatric, brain cancers low
At the end of the afternoon, Karen and Lisa shared an emotional hug, and they remain connected in their mission to raise awareness about pediatric cancer and remarkably low amount of funding it receives.
Only 4 percent of donations given to national causes such as the American Cancer Society go to pediatric cancer research, and most of that goes to the more populated types such as leukemia. Glioblastoma, which is what Kyleigh has, and DIPG, the kind Lauren had, receive minuscule amounts.
That’s why Lauren got involved with The Cure Starts Now, raising more than $2 million for a foundation where all of the funds go toward pediatric brain cancer research.
“When you get down to the nooks and crannies, it’s hard to know all these kids are just sitting ducks unless we rally around them,” Lisa said. “Fundraising is the biggest thing we can do.”
Kyleigh has her own page on The Cure Starts Now "Our Heroes" website, where people can donate to the cause in her name.
Karen said she has come to accept that no amount of money is going give Kyleigh any more time than the short amount she has left, but her hope, like Lauren’s was, is to publicize the need for specific funding to find a cure as soon as possible.
“I needed to keep this private for a while because we needed some time to absorb this, and still are,” Karen said. “There are days that cut me like a razor. There are some things you can’t pray away, and an incurable brain tumor is one of them. There is a difference between giving up and knowing when enough is enough.”
“I love my daughter with all my being, and I wish there was something, anything that could be done,” she continued. “I pray no one else has to go through this.”
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