Can you ring the bell signaling that your cancer is in remission while still wishing you could spend another night at Novant Health Hemby Children’s Hospital in Charlotte?

If you’re Chase Maddex, you can. And not just one night. As he shared during his celebration on a winter afternoon at the St. Jude Affiliate Clinic at Hemby Children’s Hospital, he’d actually prefer “five nights.”

That pronouncement inspired laughter and admiration for Chase, an 18-year-old with Down syndrome whose cancer journey has included Thanksgiving dinner in a Hemby playroom, walking the parking garage stairs for exercise, and waking up from a procedure with a request: “Snacks, please.”

“Oh gosh, he’s hilarious,” nurse Meghan Ashley said at the bell-ringing, drawing nods of agreement from her colleagues.

“I’ve never seen anyone embrace the hospital like Chase,” his oncologist, Dr. Christine Bolen, told Chase’s family, friends and Novant Health teammates after everyone had plastered Chase in paper confetti.

“This isn’t ‘Ring the Bell Day.’ This is ‘Chase Day,’” Bolen proclaimed.

Chase’s mom, Laurie Maddex, let her tears do her talking.

Chase’s dad, Bryan Maddex, thanked everyone who helped make the day possible. Then he gave the Novant Health team fair warning: “If you don’t hire him soon…”

‘We were in a good place’

Bryan and Laurie Maddex live in the Union County town of Waxhaw with their four boys. There’s Chase, 21-year-old Ian, 16-year-old Gavin and Zeke, 18, who was four when the Maddexes adopted him from an orphanage in Ukraine in 2011.

Step into their home, where the walls are adorned with photographs of the boys at all ages, and you can feel the love. You can also feel the chaos, as Gavin puts it with a smile, drawing nods of agreement from the rest of the family.

From the moment he held his newborn, Bryan knew that Chase, or “Chasey” as they call him, would bring joy and challenges. Chase is a happy soul who loves movies, mac and cheese, family game night (including Monopoly) and cruises, including one courtesy of Make-A-Wish. At Cuthbertson High School in Waxhaw, he played percussion in the marching band.

When his parents took him to the doctor in 2023, they thought his busy schedule might be responsible for his lethargy. Laurie remembers seeing a photo of Chase in his band uniform and thinking that he looked like a ghost.

On Oct. 2, 2023, they got the diagnosis: acute lymphoblastic leukemia, a fast-growing blood cancer that originates in the bone marrow and can spread. It’s the most common form of pediatric cancer. Symptoms can include fatigue, pale skin, easy bleeding and bruising and frequent infections.

Chase’s stays at the hospital ranged from five to 35 days. His treatment included chemotherapy and medication to protect him from infection. During the journey, Chase lost his hair. He developed mouth sores. His joints hurt.

Children with Down syndrome, Dr. Bolen says, are more sensitive to chemotherapy and have an increased risk of infection. Some 70% of children with Down syndrome who have acute lymphoblastic leukemia are cured after chemotherapy, Dr. Bolen said, compared to 85% who do not have Down syndrome.

In what became a routine, Bryan and Laurie Maddex ferried between home and Hemby. Whoever’s night it was to stay slept on an air mattress in his room. They set up a coffee maker and brought their own TV so Chase could watch movies on Amazon. The nonprofit Claire’s Army, which supports families of kids with cancer, made pizza night possible.

As tough as cancer is, Chase found the perks to being a “guest” at Hemby. He enjoyed ordering food from the menu. He listened to Britney Spears songs on his headphones to his heart’s content. None of his brothers were there to plead “Hurry up!” while he took his sweet time singing in the bathroom.

As nurse Ashley and her colleagues at the bell-ringing agreed, Chase lived up to his dad’s description of him as “cute demanding.” And he stole their hearts.

Nurses brought Chase gummy worms and gummy bears to blunt the metallic taste of the chemo. They got down on the floor (his preferred location) to take his temperature. At the bell-ringing, Chase’s dad apologized for any knee issues.

When Chase woke up from a procedure and asked for juice — in a glass, not a paper cup — they smiled. And then they went and found a glass.

At some point on the cancer journey, Bryan realized how lucky Chase was to be loved and cared for like this.

“We were in a good place,” he said. “My prayers turned to prayers of thankfulness.”

‘He brings us joy’

Before cancer, Chase was never an easy patient. In his younger days, he had to be held down in the dentist chair. You’d never have known it watching him walk the red carpet in the St. Jude Affiliate Clinic lobby, yellow pompom in hand, sounding forth the sweetest sound imaginable — the ringing of a bell by a cancer survivor.

Chase is back at Cuthbertson High after missing eight months of school. While cancer has robbed him of the stamina to stay in the marching band, now he enjoys art and cooking classes. He has reclaimed his spot on the floor of the living room at home, devouring snacks while listening to his headphones.

Completing therapy does not mean saying goodbye to his treatment team. In this first year after treatment, he’ll return monthly for tests to screen for a relapse and to monitor for possible long-term effects of chemo. In year two, he’ll be seen every two months, year three every three months, and so on.

Bolen said Chase will stay on antibiotics and require antibody infusions until he demonstrates adequate immune recovery.

Ultimately, Chase’s visits will be annual until he is off therapy for 10 years.

On the afternoon the bell sounded, there was little talk of cancer. The day instead belonged to the guest of honor, a healthy, happy young man who went home with parting gifts that included gummy bears and a purple Hemby Children’s Hospital T-shirt. Nice gifts — but as his care team would say, not nearly as nice as the gifts that Chase has given them.

Said his father, Brian: “He doesn’t know what chemo is, what cancer is. He’s a here-and-now kid. I wish I could be more like him.”

Said his oncologist, Dr. Bolen: “I’ve never seen him get down. He finds the positive moment and he stays there. He brings us joy.”