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Desmoplastic Infantile Ganglioglioma Brain Tumor: Marcel’s Story

Desmoplastic Infantile Ganglioglioma Brain Tumor: Marcel’s Story

It takes about four hours to fly from the Dominican Republic to Philadelphia, but the trip little Marcel took from Santiago to Children’s Hospital of Philadelphia in 2021 changed the rest of his life.

Marcel began having seizures soon after he was born in the Dominican Republic. They grew progressively more intense and frequent. “Eventually the seizures were so frequent they were almost nonstop, and he had to be admitted to the ICU in the DR,” says his father, Carlos. Radiology studies showed a large tumor in the right side of his brain.

Considering how delicate Marcel’s case was, Carlos and Maria, Marcel’s mother, decided to reach out to CHOP’s Global Patient Services (GPS) team, which arranged for a medical flight to Philadelphia. Patti Larkin, BSN, RN, Transport Coordinator for GPS, led the flight crew that brought Marcel to Philadelphia on the Fourth of July 2021, 10 days before Marcel turned 6 months old.

Nine-hour brain surgery

Marcel's StoryFour days later Marcel was in the CHOP operating room, where neurosurgeon Benjamin Kennedy, MD, operated for nine hours. The fast-growing tumor had taken up most of his frontal and right temporal lobes and was wrapped around the middle cerebral artery (MCA) and its branches, the major source of blood supply to the brain.

Dr. Kennedy used micro scissors to meticulously snip the 7 cm (about 2.75 inches) tumor away without damaging the MCA, a complicated task because the tumor was multi-cystic, meaning both hard tumor tissue and fluid-filled cysts were involved. Together, the mass was the size of an orange.

“It was one of the more difficult tumors I’ve ever taken out,” Dr. Kennedy says.

Serial MRIs post surgery demonstrated that the tumor had been completely resected.

Neuropathology key to treatment decisions

Neuropathologist Mariarita Santi, MD, PhD, later determined the tumor was a desmoplastic infantile ganglioglioma (DIG). About 1.25% of brain tumors are DIGs, but they are sometimes misdiagnosed at less experienced hospitals because they appear to be high-grade tumors (requiring more intensive treatment) when they are in fact low-grade tumors with an excellent prognosis after they are removed.

Jessica Foster, MD, Marcel’s oncologist, says, “DIGs don’t respond well to chemotherapy, which is another reason getting the pathology right is so important. Marcel didn’t need any additional treatment. We’re following him with imaging — first every three months and now every six months — to make sure it is not regrowing.”

As they grew, the tumor and cysts had pushed Marcel’s brain aside. He has experienced after affects from that trauma and the surgery, mostly with weakness of his left side. Rehabilitation at CHOP and ongoing physical therapy at home are helping him recover.

‘A strong one’

“He’s gained control of his left arm, and he’s making progress with his left hand,” Carlos says. “He’s progressing slowly, but he’s getting better.”

Maria says, “He’s a strong one. He’s a little behind in his speech and is in speech therapy for that. He’s doing great. He’s in a regular preschool, he plays, he’s happy.”

Most importantly, Marcel, now 22 months old, hasn’t had a seizure since the tumor was removed.

Marcel’s neurologist, Sara Molisani, MD, anticipates that Marcel will soon be weaned from the antiseizure medication he is on as a precaution.

Older son also part of the CHOP family

The family was familiar with CHOP and its world-class level of care because Carlos and Maria had brought their older son, Guillermo, now 4, to Philadelphia to be evaluated by CHOP’s Autism Integrated Care Program before Marcel was even born.

“The autism team created a treatment plan that has been invaluable with getting him on the right track and receiving the right services at home,” Maria says. “He has physical therapy, occupational therapy, speech therapy and some behavioral therapy. Guillermo is doing great, thanks to therapists at home and CHOP’s guidance. The CHOP doctors encouraged us to have Guillermo’s therapies at home, and it was a great recommendation.”

Carlos concludes, “CHOP has the experts our sons needed. Our family is so grateful for the amazing care we have received.”


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