A mom knew her toddler’s frequent infections weren’t normal. The rare diagnosis was devastating.

Jonny Terrell was a healthy, happy baby — but a month before his first birthday, he came down with an infection. Days later, he was vomiting. Over the next few weeks, mom Emily Robichau took him to the doctor for ear infections, stomachaches, rashes, vomiting, diarrhea and more. 

“The list was so long I couldn’t remember it all,” Robichau recalled. She had three older children and knew that kids got sick. But she had never seen anything like the constant stream of ailments her 11-month-old was experiencing. 

The day after Jonny’s first birthday, in August 2024, his stomach swelled, “like watching a balloon fully inflate,” Robichau said. The next day was his one-year checkup. Jonny’s pediatrician took one look at him and sent them to Massachusetts General Hospital for Children. When Robichau and Jonny arrived, the toddler underwent CT and MRI scans that found a mass “about the size of a grapefruit” in his liver. A biopsy of the mass found that he had a rare and aggressive cancer called malignant rhabdoid tumor. 

Robichau said she and her fiancé, Michael Terrell, began “looking at urns” as they learned more about the condition.   

“Doctors were telling me the statistics and how bad they were, and to hope for the best, but kind of prepare for the worst,” Robichau recalled. 

What is malignant rhabdoid tumor? 

Malignant rhabdoid tumor is a rare tumor, most often seen in infants and toddlers, said Dr. Michael Ortiz, a pediatric oncologist at Memorial Sloan Kettering Cancer Center and the clinical director of the rare tumors program at MSK Kids, the center’s pediatric arm. Ortiz was not involved in Jonny’s care. Just 20 to 25 patients are diagnosed with the illness each year, according to Boston Children’s Hospital.

The tumors can “show up anywhere” in the body’s soft tissues, but “have a predilection for the brain and kidney,” Ortiz said. The tumors also have a “high propensity to metastasize,” or spread, throughout the body. 

Malignant rhabdoid tumors are “one of the worst prognostic tumors we have in pediatrics,” Ortiz said. Only about one in 10 children with the diagnosis will be cured, he said. 

Treating malignant rhabdoid tumor

Luckily for Jonny, his case was a rare example where the tumor had not spread, said Dr. Lauren Boal, a pediatric oncologist and hematologist at Massachusetts General. She and Dr. Danielle Cameron, a pediatric surgeon with a focus on tumors like this, developed a complex treatment plan for Jonny. 

“This disease really doesn’t have an absolute regimen. You have to carve out an individualized plan,” Boal said. For Jonny, that meant a course of six chemotherapy agents. He responded well, though he suffered unpleasant side effects from the powerful medications, Boal said, and needed a feeding tube to eat. 

During that period, Robichau and Jonny lived in housing across the street from the hospital. It was stressful to live apart from the rest of the family, but Jonny’s rigid treatment plan and its side effects made it necessary to stay close. 

“We all experienced the same trauma in different ways,” Robichau said. “I feel like I just went on autopilot. It was lonely, it was quiet. It just had us overwhelmed, anxious, scared, financially struggling, big time.” 

Once chemotherapy shrank the tumor to about half its original size, Cameron surgically removed the mass. The operation was followed by radiation treatment. Despite the difficult circumstances, Jonny was an “amazing” patient, Cameron said. 

“I have vivid memories of him just going around the unit in his little red wagon and playing, constantly laughing,” Cameron said. 

“We don’t really take anything for granted”

Now just over 2 years old, Jonny is “in remission but undergoing careful surveillance,” Cameron said. He will undergo frequent scans to ensure the tumor does not return, Boal said. 

“Often the higher and highest risk time to have a relapse of this very difficult disease is in the first year or two after you complete your chemotherapy,” Boal said. “We are watching him very closely, but very hopeful that he will not have a recurrence of this.” 

Ortiz said that children who survive malignant rhabdoid tumor often see later-in-life side effects, including an increased risk for developing a second form of cancer. Jonny will also recieve IV antibiotics monthly for the next few months to keep infections from taking advantage of his compromised immune system, caused by the chemotherapy. 

Robichau said she worries for Jonny’s future, but is just trying to enjoy the current moment. He had his chemotherapy port removed, and the family recently began getting rid of the medical supplies they had acquired during Jonny’s treatment. 

“We still live minute by minute, day by day, week by week, as much as we can soak up every moment,” she said. “After that kind of experience, we don’t really take anything for granted anymore.” 

An emotional birthday

For Robichau and Terrell, the end of August was an emotional time time. Less than a year ago, she had been told to expect the worst. But this summer, the family was able to focus on planning Jonny’s second birthday party. The event overlapped with the couple’s twins’ birthday, and meant they could turn what had been a traumatic day into a celebratory one. 

“It all happened around this time,” Robichau said. “We had the party on the twins’ birthday, because that was the day he left (for the hospital). So we want to change that a little bit.” 

A week after the party, Jonny saw Boal at Mass General Hospital to ensure the cancer was still in remission. His scans were clear, Boal said. 

When CBS News spoke to Robichau, Jonny could be heard chattering in the background. Terrell said he was “running around like nothing happened.” 

“It’s becoming more and more real,” Robichau said. “It’s been a long, long year. We’re just transitioning to our new normal.”