'You shouldn't give up.' Boy with brain cancer a special guest at St. Baldrick's event

Jaysen Cook-Bey is known as "Hollywood" around the proton therapy center in Warrenville.

The Glen Ellyn boy's cancer treatment sessions left him frail and fatigued, but they didn't steal his sense of style.

He liked to wear a cool pair of sunglasses and especially his superhero Onesies when he arrived at the Northwestern Medicine Chicago Proton Center. For his final session, Jaysen dressed in a suit and tie.

"It was a show every single time he walked in," his mom, Sonia Gutierrez, said. "That's him. He always prides himself on how he looks."

For the past seven months, since doctors found a tumor in his brain, Jaysen has shown his family and everyone involved in his care his resilience and independence. He's also shown empathy for other kids with cancer.

Which is why it isn't so remarkable that the 9-year-old called it an "honor" to serve as a special guest at a recent fundraiser for pediatric cancer research at the proton center.

"Sometimes, I'm like, how did I get such an amazing kid," his mom said.

Proton center staff members knew Jaysen, an outgoing old soul, would stay true to his "Hollywood" style and step into the spotlight as the honorary barber at the head-shaving event. But Jaysen also assumed a responsibility with the role, hoping to inspire other kids who have lost their hair and a normal childhood to cancer.

"You shouldn't give up," he said. "You should keep trying and trying."

His parents say Jaysen has embodied that message since his ordeal began in August. After he had been complaining of severe headaches, his doctors ordered a CT scan that revealed a mass in his brain. Surgeons removed the tumor and confirmed he had medulloblastoma, an aggressive form of brain cancer.

"He's definitely my hero, bar none, the strongest person I ever knew," his dad, Sherron Cook-Bey, said.

At the Warrenville center, Jaysen completed proton therapy, a treatment designed to target cancer cells more precisely than standard X-ray radiation while sparing healthy tissue.

"Explaining to him the whole process, he was always very involved," Gutierrez said. "He was very involved with his brain surgery. He's been very involved with the treatment here. He asked 20 million questions."

Jaysen is still a curious, thoughtful kid as he prepares Tuesday to start his fourth of nine chemotherapy cycles at Lurie Children's Hospital in Chicago.

"When we go to Lurie's, we have to stay overnight for his treatment, and then he sees the other younger kids, and he's like, 'Mommy, I'm lucky to have had cancer at 9 and not at 2, 3 years old or even a baby,'" Gutierrez said. "'I understand what's happening in my body and my cells and these kids don't.'"

His family finally got some good news from an MRI scan last week that showed no signs of a tumor in his brain. On the day they celebrated those results, Jaysen returned to the proton center to help shave the heads of Northwestern employees who raised nearly $12,000 for the St. Baldrick's Foundation and donated eight bags of long hair or more than 8 inches to Children With Hair Loss, a Michigan charity.

Though she was losing her locks, Victoria Casablanca, a radiation therapist, greeted Jaysen and his clippers with a smile, knowing she was standing in solidarity with cancer patients.

"Now he's coming full circle," Casablanca said of the honorary barber.

She started his treatment and helped him adjust to a protective face shield and body mold he laid in while receiving proton therapy.

"He was not only patient with us, but just so understanding of what we were trying to do to help him," she said.

Jaysen is looking forward to the end of his chemotherapy regimen in October and eventually to going to junior high. The sharp dresser dreams of becoming a Secret Service agent because he wants to "protect the president one day," his mom said.

"I just want to go back to normal," she said. "He wants to get back to normal."