Jonny Terrell was a healthy and happy baby, but everything changed just a month before his first birthday when he fell ill with an infection. Shortly after, he began experiencing severe symptoms, including vomiting. Over the following weeks, his mother, Emily Robichau, took him to the doctor multiple times for various ailments such as ear infections, stomachaches, rashes, and diarrhea. Robichau recalls, “The list was so long I couldn't remember it all.” Having three older children, she was familiar with childhood illnesses but had never encountered such a relentless stream of issues affecting her 11-month-old son.
On the day after Jonny's first birthday in August 2024, his stomach began to swell, resembling a balloon inflating, Robichau shared. The following day was scheduled for his one-year checkup, where Jonny's pediatrician quickly recognized the severity of his condition and referred them to Massachusetts General Hospital for Children. Upon arrival, Jonny underwent CT and MRI scans that revealed a mass in his liver, approximately the size of a grapefruit. A subsequent biopsy confirmed the devastating diagnosis: Jonny had a rare and aggressive form of cancer known as malignant rhabdoid tumor.
Malignant rhabdoid tumor is a rare type of tumor predominantly found in infants and toddlers, explained Dr. Michael Ortiz, a pediatric oncologist at Memorial Sloan Kettering Cancer Center. According to Boston Children's Hospital, only 20 to 25 cases are diagnosed each year. These tumors can appear in any soft tissue of the body but especially target the brain and kidneys. "Malignant rhabdoid tumors are among the most challenging prognostic tumors in pediatrics," Ortiz noted, stating that approximately only one in ten children diagnosed with this condition can be cured.
Fortunately for Jonny, his specific case showed no signs of metastasis. Dr. Lauren Boal, a pediatric oncologist and hematologist at Massachusetts General, along with Dr. Danielle Cameron, a pediatric surgeon specializing in tumors, crafted an intricate treatment plan tailored to Jonny's needs. “This disease doesn’t have a standardized regimen; you must create an individualized plan,” Boal stated. Jonny's treatment involved a regimen of six chemotherapy agents. While he responded positively, he faced challenging side effects from the powerful medications, necessitating a feeding tube for nutrition.
During this taxing time, Robichau and Jonny lived in housing close to the hospital. “It was stressful to be apart from the rest of the family,” she recalled, “but Jonny's strict treatment plan made it essential to stay nearby.” The family experienced trauma in different ways, with Robichau feeling overwhelmed and anxious. Once chemotherapy reduced the tumor to about half its original size, Dr. Cameron successfully performed surgery to remove the mass, followed by radiation treatment. Despite the difficulties, Jonny remained a resilient patient, often seen joyfully navigating the unit in his little red wagon.
Now just over two years old, Jonny is in remission but continues to receive diligent surveillance, as emphasized by Dr. Boal. Frequent scans will monitor his condition, especially since the risk of relapse is highest within the first year or two post-chemotherapy. “We are watching him closely, but we are hopeful he will not have a recurrence,” Boal said. Ortiz mentioned that survivors of malignant rhabdoid tumor may face long-term side effects, including a heightened risk of developing a second cancer. In addition, Jonny will receive monthly IV antibiotics for the next few months to help protect his compromised immune system resulting from chemotherapy.
Robichau shares her concerns for Jonny’s future, yet she is committed to cherishing each moment. With Jonny's chemotherapy port recently removed, the family has started to declutter the medical supplies accumulated during his treatment. “We live minute by minute, day by day, soaking up every moment,” she said, reflecting on how their experience has changed their perspective on life.
The end of August marked an emotional time for Robichau and her fiancé, Michael Terrell. Less than a year after being told to prepare for the worst, the family celebrated Jonny's second birthday alongside the twins' birthday, transforming a traumatic date into a joyous occasion. “We wanted to change that narrative,” Robichau explained. A week after the party, Jonny returned to Mass General Hospital for follow-up scans, which confirmed he remains cancer-free. With laughter in the background, Terrell noted, “He’s running around like nothing ever happened.” Robichau concluded, “It’s becoming more and more real. It’s been a long, long year, and we’re transitioning to our new normal.”
