During a two-week span last winter, a pea-sized lump on Belle Grochowski’s cheek grew so large that the toddler couldn’t breathe out of her right nostril or fully see from her right eye. Misdiagnosed at her local hospital, Belle and her alarmed parents obtained a referral to St. Jude Children’s Research Hospital. There, they hoped to find not only clarity, but also hope and quick action.
They found all three at St. Jude, where doctors correctly identified the mass as a desmoid tumor, a noncancerous but aggressive growth that can develop randomly almost anywhere on the body. Because of the rare tumor’s location on Belle’s face, however, removing it was paramount — and precarious.
The complex surgery had the potential for leaving the chatty, outgoing toddler with extensive scarring, if not worse. But the hospital’s surgeons aimed to avoid that scenario. A trio of specialists collaborated in the operating room to remove most of Belle’s tumor through her nostril and sinus cavity without making any skin incisions. To the naked eye, she looks virtually untouched.
“I was expecting the worst,” recalls her mom. “But you can’t tell anything has happened to Belle. They really preserved her quality of life.”
Experts in demand
Otolaryngology focuses on diseases and disorders of the ear, nose and throat (ENT), as well as related structures of the head and neck. At St. Jude, more than 100 children undergo ENT procedures each year, with about 700 receiving ongoing treatment at outpatient clinic visits.
“The number of children in our service is higher than people might expect,” says Tony Sheyn, MD, who led Belle’s surgical team. “I was quite surprised at the high volume when I came here, but there’s definitely an opportunity to continue building on what we already have.”
Sheyn’s arrival in 2015 coincided with a growth spurt in otolaryngology services at St. Jude — not just in size, but also in scope and complexity. The group’s eight physicians, nurse practitioners and other clinicians handle a wide array of conditions and treatments ranging from sleep apnea to thyroid and salivary gland tumors to cochlear implants.
The team approach
Working with other St. Jude departments, ENT doctors have also begun developing a voice rehabilitation program in addition to established programs in swallowing and hearing rehabilitation. Otolaryngology doctors at St. Jude partner with head and neck cancer surgeons as well as with a skull-base surgeon who performs surgery on the bony surface beneath the brain. This specialized group can tackle increasingly complex operations most other centers can’t offer.
“The team mentality at St. Jude is fantastic, and anybody who comes here feels that,” Sheyn says. “I think it’s consistent with what St. Jude is known for, because our mission includes treating children with rare tumors and cancers.”
“It’s important to have not only otolaryngology, but all of the surgical subspecialties well covered for St. Jude patients,” adds Andrew Davidoff, MD, St. Jude Surgery chair. “ENT is an important part of that.”
The secret’s out
As the ENT program has grown, so has its reputation. On Sheyn’s watch, St. Jude has developed one of the busiest thyroid programs in the country, forming a multidisciplinary thyroid team that includes specialists from oncology, endocrinology, nuclear medicine, pathology, diagnostic imaging, psychology, genetics, general pediatric surgery and ENT.
Thyroid cancer among children remains extremely uncommon, but St. Jude receives referrals from across the region because of the group’s deep expertise. Sheyn has consulted on more than 100 such patients in the last three years.
“Word has gotten around that we’re accepting these patients for treatment here and have an expert with an interest in thyroid cancer,” Davidoff says.
A referral to St. Jude can spell the difference between a good and great result for a child with an unusual ENT condition. Belle’s mom says the 2-year-old is back to greeting everyone she meets in the grocery store, with no indication of her recent medical ordeal.
“She had a very good cosmetic result, and that demonstrates the team approach to how we treat kids here,” Sheyn says. “It’s a great outcome for a small child who won’t have any external marks as a result of her surgery.”
From Promise, Autumn 2018