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“What’s the worst thing that ever happened in your life?” Those are the words Sullivan Butler chose to open his autobiography.
Sullivan – affectionately called Sully by his family – was a healthy, active 10-year old that did 10-year old stuff. His days were filled with Cub Scouts, triathlons, Legos, and piano lessons. He excelled in every subject at school and was in the gifted and talented program.
But now, Sully is relegated to a much different educational experience. Schoolwork doesn’t come as easily to him anymore. The cancer that invaded his brain and coated his spine and the ensuing radiation and chemotherapy treatments caused irreparable damage to his body and mind.
“Some things that were very easy for him before are hard now,” said his father, Dan. “That’s a tough thing to live with.”
Dan and his wife Jen discovered Sullivan’s issue rather quickly. In November 2016, Sully was suffering from back pain that worsened as the weeks continued, so Dan took him to the emergency room fearing it was a kidney issue. Instead, Sully’s head started throbbing while waiting in the ER. Once the doctors performed a cat scan, they discovered the mass on his brain.
They rushed him to the hospital where they discovered the tumor was growing so fast it had blocked a ventricle in his brain, the root cause of his headache. The doctors quickly scrapped their plan for a next-day surgery in favor of operating that evening.
“They said we really have to do it tonight. It was a very long six hours,” said Dan, “the worst night of my life.”
After removing a golf ball-sized tumor from his brain, Sully’s medical challenges continued. When he woke up from surgery, he had lost the ability to stand up or walk. Sully was soon diagnosed with posterior fossa syndrome, which is caused when the brain is damaged during surgery. After more surgeries to drain the excess fluid in his brain, Sullivan headed home in his new wheelchair.
Sully was only at home with his family for one day when he began to lose feeling in his legs. The tumors on his spine were growing so fast, Sully’s doctors were forced to start radiation treatments early – without allowing Sully’s brain ample time to heal from surgery. “We started emergency radiation treatment on a Sunday. The facility was closed, but Sully’s radiation team came in, unlocked the building, and marked their targets on him with a Sharpie,” said Dan.
Within a few days, Sully’s neck pain began to subside, an early indication that the radiation was working. By the end of radiation, an MRI confirmed the tumors had begun to shrink. Five more months of difficult treatment continued with inpatient chemotherapy in Houston.
“It really indicates how serious these diseases are when you would intentionally do a procedure that can damage vital organs and reduce a child’s IQ by 20 points,” said Dan.
When treatment finished in May 2017 just two days before Sully’s 11th birthday, he received the greatest gift he could’ve asked for: clear scans. Since then, his MRIs every three months have come back with no evidence of disease.
Sully is trudging along the lengthy road to recovery, but he’s already making strides his family didn’t think were possible.
“He’s gone from a walker to a cane to unaided walking, getting his balance and gait back, his recovery has just been miraculous,” said Dan. “Some of his doctors didn’t think it was possible.”
As for support systems, Sully is surrounded by friends, classmates, and extended family, including his grandma “ZZB,” a cancer survivor herself, and two younger brothers, 8-year-old Cashel and 5-year-old Finn. They’ve both adapted to their brother’s situation in their own way, but throughout it all Sully took his older brother role seriously.
“He didn’t want them to see him cry and I always thought that was something very special,” said Dan. “He thought so much of them and didn’t want to make them upset. The three of them have a special bond and it has gotten stronger.”
Meanwhile, Sully continues to adjust to his post-treatment life. He never lost hope and this struggle has made the entire family appreciate their own lives even more. While the only guarantee for cancer survivors is uncertainty, the Butlers approach each day as if the worst is behind them.
After being plunged into the childhood cancer world unexpectedly, they are helping other families facing a similar dose of harsh reality. They signed up as Ambassadors for Alex’s Lemonade Stand Foundation and are participating in The Lemon Climb Houston to raise awareness and funds.
Most importantly, they’re trying to forge a better future for children with cancer.
“Two decades ago, this was a different ballgame, but with access to the right funds and having people support organizations like ALSF, 20 years from now it will be a different ballgame as well,” said Dan. “There’s almost nobody my age running around that survived medulloblastoma as a child. There will be 20 years from now.”
The last words in Sully’s autobiography?
“I’m a cancer survivor now. It’s hard, but I’m still the same person I was before.”
Updated January 2018
Information provided by Dan Butler, Sullivan’s father
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