Just hours after receiving an initial diagnosis of mumps, three and a half year-old Sullivan “Sully” Brooks and his parents found themselves speeding to the emergency room after blood tests revealed something much worse. The final diagnosis: acute lymphoblastic leukemia. Sully’s “normal” childhood was suddenly gone. Now, Nationwide Children’s is helping to bring it back.
It was a warm May afternoon when the Brooks family was driving home from a visit to grandma’s house. Megan peered in the back seat to check on her daughter, 7 month-old Harper and son, three and half year-old Sully. Beneath the mop of blond hair, the little boy’s face was pale, and his big blue eyes, usually snapping with mischief were dull. Sensing something was wrong, Megan and her husband Zach drove straight to the doctor’s office.
There, the physician drew blood to confirm an initial diagnosis of mumps, and the family went home so Sully could sleep it off. The pediatrician called late that evening and said Sully had to be taken immediately to the emergency room at Nationwide Children’s Hospital – Sully’s blood tests revealed that he had leukemia. Within just 36 hours, Sully was receiving his first of what would be several rounds of chemotherapy.
“Everything really stopped on that day. I think the shocking part is when all your plans, your ‘normal’ is suddenly taken away,” recalls Zach. “It’s abrupt and you realize it’s going to change everything for years.”
Sully was diagnosed with acute lymphoblastic leukemia (ALL), one of the most common of all childhood cancers. The disease disrupts the production of normal white blood cells, and the treatment renders children susceptible to even the mildest infection. ALL can progress rapidly and is fatal without treatment. Sully’s case was particularly dire because tests revealed that the cancer had spread to his spinal fluid.
As a national clearinghouse for storing and studying millions of childhood cancer cells, Nationwide Children’s provided Sully with a customized treatment regimen based on his cancer type. The therapy – which will occur over three and a half years - includes a combination of oral chemotherapy, IV chemotherapy, chemotherapy shots, chemotherapy into the spinal fluid and radiation.
“Sully doesn’t even know he has cancer. That will be a part of his story someday, but right now he doesn’t understand it. He knows he’s sick. He knows the injections give his tumor ‘a drink.’ He knows he’s loved,” says Megan.
With remarkable resilience, his parents have insisted on keeping the mood positive during the treatments where Sully must stay in the hospital for days. Hospital policy dictates that visitors must know a secret password before they can call on patients. The Brooks have decided to use passwords that have the kind of gross-out funny factor that only a four year old – and a staff who is used to working with four year olds - can truly appreciate.
“Nationwide Children’s lives up to its reputation. All of the nurses are fantastic, every single one of them. They’re the most amazing team of doctors who you know will absolutely not let anything happen to Sully on their watch,” says Zach.
Sully has responded well to initial treatment, and today his leukemia is in remission. He loves to read out loud to anyone who will listen – including reciting books while going to the bathroom, and a never ending dialogue that may include tattling on himself, or his baby sister. It’s hard for Sully’s parents to believe he still has two more years of chemotherapy to endure – and that there are thousands more children just like him.
“I had no idea how many children were getting cancer – and how terribly underfunded pediatric cancer research is. I know it’s a small number of kids who get cancer compared to adults. Some of these kids getting cancer are just two. Sully hasn’t even gotten to ride a bike,” says Megan.
Inspired to help raise awareness for pediatric cancer and tell Sully’s story, Megan started a blog and active social media outreach around #teamsully, sharing her family’s experiences with Sully’s diagnosis and treatment. She and Zach are training for a half marathon to raise money for childhood cancer research – something the couple says they couldn’t have imagined either of them doing a year ago.
“When your child has cancer, it makes you able do things you would never have thought possible before,” says Zach. “These kids need attention. They need arts, crafts, items to distract them from the medical events that they experience. Donations for these items are valued and can be dropped off at Nationwide Children’s Hospital. This is a heck of a place to start.”
The frustration in their voices describing the funding situation with pediatric cancers is tangible. So is the joy and optimism when they talk about how Sully, who they describe as both a sweetheart and a ‘crazy pants’ will finish chemotherapy when he is six and a half – and hopefully, never have to worry about cancer again. But Sully, busy basking in the happiness of being home with his family, isn’t thinking about being sick.
“I am not a sweetheart,” he insists. “But, yeah. I am a crazy pants.”