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Sullivan Butler

  • Medulloblastoma

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Sullivan was a 10 year old who loved Legos, triathlons, playing with his brothers and working the talented and gifted program at his school. He’s a sweet kid with an impressive inner strength and drive whose life was interrupted by a medulloblastoma diagnosis.

Leading up to diagnosis, Sullivan had been complaining of back pain. When it only got worse, his parents, Dan and Jen, took him to the emergency room finally and the doctor there was more concerned than anyone they saw before. Things got bad in a hurry, as Sullivan started having severe headaches in the ER and his father pushed for a CAT scan from the doctors. Afterwards, they pulled Dan aside and told him about the cancer diagnosis.

He couldn’t believe it, but the doctors acted quickly and sent them to Texas Children’s Hospital before doing a surgery that night to remove the tumor that had spread to his spine. Those six hours were the longest night of Dan’s life, but thankfully Sullivan awoke able to move his fingers and toes before talking with his parents. Sullivan developed posterior fossa syndrome, which affected the part of his brain that controls balance and coordination, causing him to be unable to walk.

After three weeks in the hospital, they went home for just one day before they had to return to the hospital when Sullivan lost feeling in his legs. They had to start radiation early, before his brain had fully healed, and that lasted for a month. Finally, they were able to schedule out chemotherapy and underwent inpatient treatments for a week at a time for five months.

It was an incredibly difficult time for Sullivan’s entire family, but his dad will never forget when he stood up for the first time in December 2016. That was the start of Sullivan’s improvement, as he continues to make physical improvements despite the challenges he faced during treatment. He finished treatment in May 2017 and his family is hoping for good news with all subsequent scans as he continues his return to health.

His family lives in Houston, so it was a quick trip for them to travel for treatment at MD Anderson Children’s Hospital and Texas Children’s Hospital. It was hard to find much light in their journey, but the most important part for their family has been the increased awareness of the tribulations involved with facing childhood cancer.

They want other families to make sure they know the reality of these disease. The treatments are hard and difficult on everyone involved, but there are gains being made. Research is well past where it was 20 years ago and it will only continue to improve with support of places like Alex’s Lemonade Stand Foundation.

Their family have gotten involved with advancing that research too, supporting the Foundation through events like The Lemon Climb Houston.

Information provided by Dan Butler, Sullivan’s dad

Updated January 2018

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