Roman's Story – Embryonal Rhabdomyosarcoma

Meet Roman. Roman’s smile begins in a small corner of his mouth, but quickly opens up to a full-on, wide-open grin when he gets excited. And he’s got a lot of reasons to be excited.

Roman’s a 5 year old boy who has a very rare cancer: embryonal rhabdomyosarcoma. And today, a year and a half since meeting Dr. Rawal, he is cancer-free.

In 2019, Roman got a cold during Labor Day weekend that never really went away. He was tried on multiple medications, including allergy medications and antibiotics. Nothing really helped. Then he saw Dr. Rawal. After looking at the back of his nose, obtaining an MRI and a CT scan, and doing a biopsy in the operating room, Dr. Rawal had a diagnosis: parameningeal, nasopharyngeal embryonal rhabdomyosarcoma. In other words, Roman had cancer in the back of his nose and his throat, at the base of his skull.

Embryonal rhabdomyosarcoma is very rare cancer: it only accounts for 5% of pediatric cancers, and only a third of them show up in the head and neck. In total, there’s less than 150 cases of pediatric head and neck rhabdomyosarcoma in the entire United States per year.

“Dr. Rawal saw him everyday in the hospital. Even though we were meeting all of these new doctors, he was the constant all throughout the process,” says Kellie, Roman’s Mom.”

Roman underwent surgery to remove the tumor from the back of the nose. Dr. Rawal and his team were able to get 95% of his cancer out from the base of his skull, going both through the nose and through the mouth, without making a single incision on his face. He was able to do this with advanced 3-D mapping image-guided technology.

Embryonal rhabdomyosarcoma is very rare cancer: it only accounts for 5% of pediatric cancers, and only a third of them show up in the head and neck. In total, there’s less than 150 cases of pediatric head and neck rhabdomyosarcoma in the entire United States per year.

“Dr. Rawal saw him everyday in the hospital. Even though we were meeting all of these new doctors, he was the constant all throughout the process,” says Kellie, Roman’s Mom.”

Roman underwent surgery to remove the tumor from the back of the nose. Dr. Rawal and his team were able to get 95% of his cancer out from the base of his skull, going both through the nose and through the mouth, without making a single incision on his face. He was able to do this with advanced 3-D mapping image-guided technology.

Before surgery, Roman was having such a difficult time breathing that he needed a machine to help breathe at night. After surgery, he was able to breathe on his own, without struggling, for the first time in weeks.

“Roman was really attached to Dr. Rawal. He was four years old at the time and was asking to see pictures of his cancer. He calls it his tonsil monster, even though we know it had nothing to do with his tonsils,” Kellie admits.

“It was a long surgery. They told me he may not want to eat too much. But the very first words he said when he woke up were: Can I have a cookie?”

After surgery, Roman needed additional therapy to get the small amount of cancer that was left. He started with chemotherapy at Yale, and then had radiation therapy in February and March of 2020 in New York City. They came home from New York right before the world shut down because of CoVID-19. He continued chemotherapy until August of 2020.

“The nice thing about being at Connecticut Pediatric Otolaryngology is that I have the opportunity to work with the best providers in New England without being tethered to a single institution. In Roman’s case, he received excellent chemotherapy and care through the Pediatric Medical Oncology Team at Yale. He then had had his proton beam therapy at MSK [Memorial Sloan Kettering] in New York City.” Dr. Rawal pauses. “We’re really able to work with the best providers, regardless of location, for the best care of our patients, and I’m grateful for that opportunity.”

Roman is now six months from his last chemotherapy day. He still sees Dr. Rawal for continued surveillance of his cancer and his sinuses to make sure everything is healing well from his surgery. Right now he’s the same as any other five year old. Roman likes to play board games like Candyland with this twin, Lucy, and loves his music class at school.

“The nice thing about being at Connecticut Pediatric Otolaryngology is that I have the opportunity to work with the best providers in New England without being tethered to a single institution. In Roman’s case, he received excellent chemotherapy and care through the Pediatric Medical Oncology Team at Yale. He then had had his proton beam therapy at MSK [Memorial Sloan Kettering] in New York City.” Dr. Rawal pauses. “We’re really able to work with the best providers, regardless of location, for the best care of our patients, and I’m grateful for that opportunity.”

Roman is now six months from his last chemotherapy day. He still sees Dr. Rawal for continued surveillance of his cancer and his sinuses to make sure everything is healing well from his surgery. Right now he’s the same as any other five year old. Roman likes to play board games like Candyland with this twin, Lucy, and loves his music class at school.

“Dr. Rawal is my hero, ” says Kellie. “I found him online and made an appointment 2 days later. To other parents: you know your child. If you feel like something’s off, you have to be their advocate, even if it makes you look or sound crazy, to find the person you need.”