Elizabeth Petitfrere speaks so softly her voice is barely heard even through a microphone, but the Brentwood girl is fortunate to even have a voice following the large, rare tumor that consumed her windpipe and nearly snuffed out her life.
The 13-year-old and her parents returned to Cohen Children's Medical Center in New Hyde Park Wednesday to thank the doctors who saved Elizabeth in a delicate nine-hour surgery in January.
The operation restored the girl's ability to breathe, talk and enjoy her favorite foods.
"It was very scary," the eighth-grader said of her experience last winter, when the tumor, which had slowly grown for months, became so obstructive, the child called 911 for emergency help.
"I couldn't breathe," she said in a clear voice that shyness, not illness, keeps barely above a whisper.
Her mother, Marie Petitfrere, afraid her daughter would die before an ambulance arrived, put Elizabeth in her car and sped to Cohen.
"I felt I could drive better than an ambulance," she said.
Dr. Lee Smith and his Cohen colleagues diagnosed a large mass known as a granular cell tumor, an abnormality so unusual only 50 cases have been reported worldwide.
"Granular cell tumor is very rare," Smith said Wednesday in a news conference at the medical center. "It is a benign tumor of the voice box."
But Smith underscored that even though the tumor is benign it is also very aggressive and grows exponentially, a factor evident to Elizabeth, who said her diet winnowed down to nothing more than soup within the final several weeks she lived with the growth. Solid food was too large to pass the bulky tumor.
The growth, doctors discovered, extended inside and outside the voice box and trachea, or wind pipe. Doctors are uncertain why the growths occur.
When he met Elizabeth, Smith said the mass had barely left an opening for oxygen to reach her lungs. He said it blocked 95 percent of her airway.
Elizabeth's parents said they had sought help elsewhere before the tumor developed into a crisis but those doctors misdiagnosed it as asthma.
Fortuitously, Smith recognized a granular cell tumor, a factor that led to emergency surgery for Elizabeth and a long stay in the hospital.
"I spent a total of 17 days here," Marie Petitfrere said. "I never went home."
Elizabeth received a special surprise Wednesday -- and a treat -- from the medical center's chef, who brought her linguine Alfredo, a favorite dish, and something she would have been unable to swallow not to long ago.