A “Button” of Bravery


Children's Cancer Research Fund Stories

Two-year-old Joey arrived at the coffee shop fast asleep and nestled against his mom, Ames, when we first met them. Tiny hearing aids poked through tufts of his blonde hair, and plastic leg braces wrapped around his legs under his Ninja Turtle sweatpants. His sister, Nancy, whom he called “Joey’s baby,” sat in her stroller, wide-eyed and content.

Between speech therapy, CT scans, clinic visits, physical therapy and chemotherapy that week, Joey was wiped out. Thankfully, the results from his recent scans to detect hepatoblastoma, a liver cancer, looked good—a relief for his family, who’d been through over a year of treatment.

In June 2016, 18-month-old Joey had been very tired and constipated. “He’d cry whenever he had a bowel movement,” said Ames. Eventually, he didn’t want to play, and Ames was sure that something was off with her son.

An ultrasound and a few tests later, an emergency room technician told them that they’d detected an 11-centimeter mass in Joey’s stomach, which doctors later confirmed was hepatoblastoma.

“It started with a random mutation in the womb,” said Ames. “It was just really bad luck, but as a mom, it doesn’t matter. You always blame yourself.”

When doctors first told Ames, she remembers throwing up in the bathroom and then asking her husband what they would do next. They both had been in the Marine Corps, and Ames said, “Finding out your child has cancer is a similar feeling to when you’re on a deployment and in a combat zone.”

Initially, Children’s Minnesota treated Joey with an aggressive chemotherapy regimen for five months to shrink the tumor before getting it removed. One of the treatments caused Joey to lose his hearing, making it hard for him to learn how to speak.

Unfortunately, doctors in Minneapolis couldn’t take out his tumor because it was too close to a main artery carrying blood to his heart. “It was beyond their capabilities and we needed a specialist,” said Ames. “Our team looked everywhere for a surgeon.” They finally found an expert in Chicago, and the family packed up Joey, set up home at the Ronald McDonald House and prepared for the biggest surgery of Joey’s life.

When surgery day finally arrived, Ames said, “I remember it being very surreal. … I almost don’t remember anything. I carried Joey back to surgery, but I didn’t take any pictures. When he came back out after surgery, it finally hit me because I saw little droplets of my baby’s blood on the surgeon’s scrubs.”

The operation was successful, and today Joey eats almost everything, including one of his medications that Ames said tastes like lighter fluid. He also takes medication for neuropathy, a condition caused by chemotherapy that left his legs weak and numb.

Joey also shows incredible bravery when he has his port accessed in his chest. He calls it his “button,” and he gets two stickers every time it’s accessed. “He even helps clean it with wipes … and he wipes down his car, too,” said Ames. Throughout treatment, and everywhere in between, Joey held tightly held onto his beloved toy red car, never leaving it behind.

Throughout this experience, Ames said, her entire perspective on life—from parenting to daily routine—has changed. “I used to be very laid back with parenting. … Now, I’m really protective … I’m a lot more of a ‘helicopter mom,’” she said. “I realized that the one I love most in the entire world could be gone in a moment … your kids are part of your soul, and there’s fear when you realize that you aren’t as in control as you thought. Cancer took the false sense of certainty that I would see my child grow up.”

Joey hopes to finish treatment this winter, and Ames is determined to spread awareness about childhood cancer to support research so kids like him can thrive.

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