Ayden Newman: Thriving After High-Risk Neuroblastoma, Thanks to Research

When 6-year-old Ayden Newman bounds through his 1st-grade classroom in Munster, Indiana, it’s hard to imagine the journey he and his family have already endured. Bright, curious, and full of energy, Ayden loves science, video games, and playing soccer. To his parents, Ashley and Nate, every ordinary day now feels extraordinary.

In the fall of 2023, life suddenly changed. While out trick-or-treating, then 4-year-old Ayden—normally the most energetic child in the group—grew tired and wanted to go home early, complaining of stomach, leg, and arm pain. After making a trip to the emergency department of a community hospital in Lafayette, where tests didn’t identify a cause, his parents were told that Ayden was probably just experiencing “growing pains.” Ashley recalled, “We gave him Tylenol at home to just try to ease the pain. It never got better. It just honestly got worse.”

A week after Halloween, while the family was visiting relatives in northwestern Indiana, Ayden became disoriented and collapsed. “He’s literally just not talking. He’s not moving,” Ashley said. “He was drooling. So at this point we think it’s a seizure.” Nate snatched him up and they went to the local hospital.

From there, Ayden was sent to the University of Chicago Medicine Comer Children’s Hospital, where a battery of tests revealed the cause of this event: a tumor pressing on his kidney. On November 16, 2023, a biopsy confirmed high-risk neuroblastoma, an aggressive cancer that most often affects children under 5. After receiving Ayden’s cancer diagnosis, Nate remembers being devastated. “It’s going to break any parent,” he said. “It shook the whole household.”

Ayden’s doctors moved quickly. He began four rounds of high-dose chemotherapy, each requiring a week-long hospital stay. Surgery followed, removing about 70 percent of the tumor. Then came combination chemoimmunotherapy, two stem cell transplants, and radiation, each requiring up to a full month in the hospital. During much of this time, Ashley was also caring for their newborn, and the family relied on support from Ayden’s grandmother, aunts, and other family members. In addition, the family received financial, lodging, and other essential assistance through grants from Comer Children’s and philanthropic organizations, like the Ronald McDonald House, to stay afloat as Ashley left her job to care for Ayden during his treatment. “It takes a village,” Nate said. “Everybody pitched in where it was needed.”

Throughout treatment, Ayden faced enormous challenges—hearing loss, nausea, fatigue, and the temporary inability to eat or walk. “We had to learn how to care for him at home with a feeding tube,” Ashley said. A major turning point came when Ayden’s oncologist recommended adding immunotherapy to his chemotherapy regimen. “His Curie score went from a 22 to a 2. Ayden responded very well to the immunotherapy. Almost wiped it completely out,” Ashley said.

After nearly 2 years of intensive therapy, Ayden completed treatment in early 2025 and now takes difluoromethylornithine (Iwilfin), a maintenance medication designed to reduce the risk of relapse. His energy has returned, and he’s back in school, playing sports, and spending time with his brothers. The family recently celebrated with a “cancer-free” party—complete with a bouncy house, swimming, and much more. It was a joyous day and the first time Ayden could just be a kid again.

The family also took a Make-A-Wish trip to Disney World, a long-awaited milestone after 18 months of hospital stays. “Ayden’s exact words: ‘a magical trip,’” Ashley and Nate said with a smile. “Just seeing him be able to play like that … we literally prayed for those days.”

Ashley and Nate are deeply grateful to Ayden’s care team and to the researchers developing new therapies. “Without research, our son wouldn’t be here,” Nate said.

“They really saved my child’s life,” Ashley added. “Funding for cancer research means giving families and their children a fighting chance, not just for survival though, for living a full and healthy life.”