When 11‑month‑old Jonny Terrell developed repeated infections and a rapidly swollen abdomen in August 2024, his mother, Emily Robichau, took him to Massachusetts General Hospital where scans and a biopsy revealed a malignant rhabdoid tumor in his liver; after a tailored course of chemotherapy, surgery and radiation, Jonny is now in remission and under close surveillance.
Key Takeaways
- Malignant rhabdoid tumor is a rare, aggressive cancer most often seen in infants and toddlers.
- Boston Children’s Hospital estimates about 20–25 new pediatric cases a year in the U.S.
- Pediatric oncologists say overall cure rates are low—roughly one in ten—making localized, early detection critical.
- Jonny’s tumor was about the size of a grapefruit and had not metastasized when diagnosed in August 2024.
- His care combined six chemotherapy agents, surgical resection and follow‑up radiation.
- The family lived near the hospital during intensive treatment and faced significant emotional and financial strain.
- Jonny is currently in remission, will receive monthly IV antibiotics for a period, and will undergo frequent scans during the highest relapse risk window.
Verified Facts
Jonny, who was previously healthy, began having persistent ear infections, vomiting, rashes and diarrhea in the weeks before his first birthday. The day after he turned 1, his abdomen expanded rapidly; at a one‑year pediatric visit clinicians ordered CT and MRI imaging that revealed a large liver mass. A biopsy confirmed malignant rhabdoid tumor, an uncommon and highly aggressive pediatric cancer.
Pediatric specialists at Massachusetts General Hospital assembled an individualized treatment plan. Dr. Lauren Boal and pediatric surgeon Dr. Danielle Cameron led a regimen that started with multi‑agent chemotherapy—six drugs were used—to reduce the tumor size. Jonny needed a feeding tube at times and experienced expected chemotherapy side effects, but the tumor shrank to roughly half its initial volume.
After the tumor responded to chemotherapy, surgeons removed the mass and the child subsequently received radiation therapy. Because the cancer had not spread beyond the liver at diagnosis, clinicians describe Jonny’s case as a more favorable presentation of an otherwise poor‑prognosis disease. He is now just over 2 years old and in remission, but remains under close follow‑up.
Context & Impact
Malignant rhabdoid tumors can arise in soft tissues throughout the body but are most commonly found in the brain and kidney. Experts, including Dr. Michael Ortiz of Memorial Sloan Kettering Cancer Center, emphasize the tumor’s high risk of metastasis and generally low cure rates: historically only about 10% of affected children achieve long‑term cure.
The period immediately after completing therapy is critical. Oncologists note the highest risk of relapse is typically within the first one to two years post‑chemotherapy, which is why Jonny will undergo frequent imaging and clinic visits. Survivors may also face long‑term effects, including an elevated risk of subsequent malignancies and other late complications from intensive treatment.
The diagnosis and treatment imposed heavy psychosocial and financial burdens on the family. Robichau and her partner lived near the hospital during care, separated from their other children at times, and described the experience as isolating and overwhelming.
- Clinical follow‑up priorities: regular scans, infection prevention, and monitoring for long‑term treatment effects.
- Support needs: housing near treatment centers, mental health services, and financial assistance for families during prolonged care.
“We are watching him very closely, but very hopeful that he will not have a recurrence,”
Dr. Lauren Boal, Massachusetts General Hospital
Unconfirmed
- No public report in the family’s account specifies whether genetic testing (for example, SMARCB1 or related mutations) was performed or what the results were.
- Longer‑term outcomes for Jonny beyond current remission have not been reported and remain uncertain.
Bottom Line
Jonny’s case illustrates both the severity of malignant rhabdoid tumor and the difference early, localized diagnosis can make: aggressive, tailored treatment placed him in remission. Families facing similar diagnoses typically need sustained medical surveillance and support for potential long‑term effects.
Clinicians urge caregivers to seek prompt attention for unusual or persistent symptoms in infants and toddlers; specialized centers and multidisciplinary teams play a key role in managing these rare tumors.