A 'Button' of Bravery
Two-year-old Joey arrived at the coffee shop, fast asleep and nestled against his mom, Ames, when we met with them. Tiny hearing aids poke through tufts of his blonde hair and plastic leg braces wrap around his legs under his Ninja Turtle sweatpants. His sister Nancy, whom he calls "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.
"[The cancer] 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 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, doctors 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 to learn how to speak.
Unfortunately, doctors in Minneapolis couldn't take out his tumor because it was too close to the 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, packed up, set up home at the Ronald McDonald House and prepared for the biggest surgery in 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 will eat almost everything, including one of his medications that Ames said tastes like lighter fluid. He also takes medication for neuropathy, a condition caused by a chemotherapy that left his legs weak, numb and in pain.
He 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 is accessed. "He even helps clean it with wipes...and he wipes down his car, too," said Ames. Throughout treatment and everywhere in between, Joey tightly held onto his beloved toy red car, never leaving it behind.
Throughout this experience, Ames said her entire perspective on life has changed—from parenting to daily routine. "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's family 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.
Hepatoblastoma is one of the fastest rising childhood cancers, but survival has held steady at just 65 percent. Researchers are working to change that and have focused on understanding the genetics of the rare cancer in order to more effectively treat it.
Logan Spector, PhD, Co-Chief Medical Advisor for CCRF, is looking at the biological processes involved as hepatoblastoma develops. His lab is collecting and analyzing DNA samples from around the world in a first-of-its-kind study, which was made possible by CCRF donors.
You can help kids like Joey thrive by supporting important research. To learn more, contact Amy Polski Larson at 952-224-8486 or firstname.lastname@example.org.