Hope in Midst of Tragedy for a Little Girl with a Rare Cancer

June 25, 2019

When Fionah Raymond was just 3-months-old, her ear began to bleed without stopping. This was initially thought to be related to an ear infection, but when the symptoms progressed despite treatment, it was later discovered to be a rare and more concerning condition. An MRI revealed Fionah had a large mass growing near her ear and extending deep into the facial muscles and bone of the cranial base. A biopsy revealed the mass to be a form of salivary gland cancer called Myoepithelial Carcinoma.

Myoepithelial carcinoma is an extremely rare disease in the pediatric population, with only a few children being diagnosed each year according to Fionah’s oncologist, Amy Walz, MD, Hematology/Oncology and Assistant Professor of Pediatrics, Northwestern University Feinberg School of Medicine.

From California, Boston, Tennessee to Puerto Rico, Fionah’s family had searched for hospitals all over the country to help their daughter, but each time they were given the same response, “We’ve never seen this in a child” or “We do not know the best treatment, and she may not survive this tumor.”

In January 2018, desperate for answers, Fionah and her family were evaluated and elected to have treatment at Lurie Children’s.

“Given the rarity of this disease, her treatment required a collaborative effort between Otolaryngology – Head and Neck Surgery (Ear, Nose and Throat), Neurosurgery, Radiation Oncology and Oncology to develop a comprehensive and individualized treatment plan for Fionah,” said Dr. Walz.

“After our very first appointment with Dr. Walz, we left with hope which is something that no other hospital had given us, and that’s when we knew we made the right choice,” said Katherine, Fionah’s mom.

Fionah’s journey has not been easy; she experienced seven cycles of an individually developed chemotherapy treatment plan and 40 doses of radiation. Lurie Children’s Otolarygology – head and neck surgery expert Jeff Rastatter, MD, and Fionah’s lead surgeon, explained her tumor was challenging because it behaved aggressively and involved a substantial amount of the side of her face and cranial base.

In July 2018, Dr. Rastatter led the surgical team that removed part of her jaw, cranial base and the muscles on the right side of her face. Ultimately, this several hour surgery resulted in complete removal of the tumor. Other key members of the surgical team included pediatric neurosurgeon Tord Alden, MD and Urjeet Patel, MD, Northwestern University Otolaryngology – Head and Neck Surgery.

“Fionah’s positive outcome was due to the multidisciplinary, collaborative efforts, which are a core part of the Lurie Children’s Head Neck and Skull Base Program,” said Dr. Rastatter, a leader of this unique treatment program. “We take referrals regionally, nationally and internationally for complicated tumors such as this.”

“When this all started, we were told Fionah most likely wouldn’t survive. Today, she is cancer-free, and we’re planning her second birthday party. My family and I wholeheartedly believe we have the doctors and staff at Lurie Children’s to thank for it,” expressed Katherine.

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