Pajama day at preschool. That’s the day the Mattingly family points to as the one that forever divided their lives into “before” Noah’s cancer diagnosis and “after.” 

It started with Noah’s preschool teacher telling his mom, Megin, that her then-4-year-old son’s belly seemed to be protruding a bit in his pajamas. And it continued with Noah’s pediatrician, who advised Megin to take Noah to Cincinnati Children’s to make sure the lump in his abdomen wasn’t caused by a blockage in his colon.

The day ended in a way Megin and her husband, Michael, never could have predicted: with an X-ray and ultrasound showing a tumor on Noah’s kidney. “We were shocked,” Megin said. “Cancer is way more than a colon blockage. We were told the tumor looked like a Wilms tumor. I’d never known anyone with a Wilms tumor. I’d never even heard of it before.”

A Different Journey for Noah

Wilms tumor is a rare form of kidney cancer that develops primarily in children. It’s the most common kind of kidney cancer in children—accounting for about 7% of all pediatric cancers and affecting around 500 children in the United States each year.

“We know that most kids [with Wilms tumor] have excellent outcomes when we combine surgery to remove the primary tumor with systemic chemotherapy, or chemotherapy that’s delivered to the entire body,” said Kate Somers, MD, an oncologist in the Cancer and Blood Diseases Institute (CBDI). “There are also some kids who, depending on risk factors, need radiation therapy to complete their total treatment course.”

Noah’s journey with Wilms tumor, however, has been “a bit different,” Dr. Somers said. 

Although surgery to remove Noah’s kidney was “very successful,” according to Dr. Somers, his cancer was stage four and came back—not once or twice, but four times over four years. Each time Noah’s cancer returned (called a recurrence), it’s been in his lungs, which is the most common place for cancer cells from Wilms tumor to spread. 

“The second time the cancer came back, talking to Noah about it was probably the hardest conversation of our lives because we knew he didn’t want to do [treatment] again,” Michael said. “He ran to his room and started crying. And after that, it just seemed like, unfortunately, he expected it to come back.”

Experience That’s Made All the Difference

Since Noah’s first cancer recurrence—discovered just as he was beginning first grade—he’s been through multiple surgeries, undergone several courses of chemotherapy and radiation therapy, and participated in two clinical trials.

Every time Megin and Michael learned Noah had another recurrence, “I wanted to vomit,” Megin said. “I’d have panic attacks. I’d feel super anxious, but I never wanted Noah to feel my anxiety.”

“It’s been hard to hear, but it’s also wonderful that they haven’t quit on him,” Michael adds, referring to Noah’s care team at Cincinnati Children’s. “They’ve all put their heads together—from initial treatment to the relapse treatment to [the point where] there’s really no playbook.”

Cincinnati Children’s is lucky to have experts in every division, Dr. Somers said. “We come together every week at a multidisciplinary tumor board where patients with challenging cases are discussed in a large group format,” she continued. “When we all sit down together, everyone can lend their area of specific expertise to develop the best treatment plan possible.”

That’s made all the difference for Megin and Michael—and, of course, for Noah.

“Having the doctors we’ve had and knowing the experience they have and the research they’ve done, especially with Wilms tumor, made me trust them,” Megin said. “I didn’t feel like I needed to get a second opinion. Nobody wants to have their kid in the hospital, but if you have to have your kid in the hospital, Cincinnati Children’s is the place to be.”

Living in the “After”

For the past 15 months, Noah—now 11 years old and in the sixth grade—has been considered in remission from cancer, with no evidence of disease on follow-up scans.

Still, Megin and Michael know they’re living in the “after.”

“We know he’s a five-time survivor and this is the longest he’s ever been out of treatment. But at the same time, we know he’s not out of the woods yet,” Michael said. “We hope Noah continues to have clear scans, but whatever happens, [the team at Cincinnati Children’s] has given us many extra years with him that maybe other kids didn’t get the chance to have."

As a pediatric oncologist, Dr. Somers notes that the highs and lows of her work are always extreme.

“It’s really the experience with the patients that keeps me coming back,” she said. “I know for kids like Noah, who have had really hard cases with very stubborn disease that keeps coming back, we can figure out how to treat it, and we have to. We have to figure out a way that cures these kids and allows them to live long, happy, healthy lives because that’s what they deserve.”

(Published October 2024)