‘We’re a strong family’ Decades of surgery await Livermore girl


LIVERMORE – Seven-year-old Camryn Berry doesn’t like surgery but knows she’ll have to endure many more before she stops growing well into her 20s.

The petite second-grader has already been through two surgeries since being diagnosed with facial fibrous dysplasia, a progressive disease that causes bony tumors to take over normal bone.

On July 30, 2005, Camryn was sitting on a swing with her head in her mother Tammy’s lap while the two talked. When Camryn opened her mouth, her mother saw a huge mass on her daughter’s left palate.

Tammy, a registered nurse, and her husband, Andrew, co-owner of Mt. Blue Agway in Wilton, took their daughter to a pediatrician who ordered a CAT scan. From there she was referred to a Portland hospital and then Massachusetts General Hospital in Boston to be treated by Dr. Leonard B. Kaban.

“He’s the greatest fibrous dysplasia doctor in the world,” Camryn said, holding a white stuffed bear named Stuffy, as she sat at the family’s kitchen table with her mother. She also went and got Allie, her favorite bear, who goes with her to every surgery.

Initially, the tumor grew to the size of a baseball and was thought to be cancerous, but was not. She had no sinus cavity on the left side of her face, instead it was all tumor.

Camryn’s black eye is fading from her second surgery Jan. 9 and her left cheek looks slightly swollen.

Prior to that surgery, the tumor was pushing up on her eye and out on her cheek. You could see a lump on the left side of her nose and the lump protruded down into her mouth, Tammy said.

Doctors in Boston operated, doing what Tammy referred to as debulking, where they drilled to the center of the tumor inside her mouth to take out some bulk and shave off the top, so it wouldn’t show from the outside.

They also reconstructed her palate, putting in a plate and some screws, which were removed Jan. 12.

“They can’t remove the whole tumor because it would leave a gaping hole,” she said.

“They drilled a new airway and then I had a little tube to hold it in place,” Camryn said. It was called a nasal trumpet. Camryn laughed about waking up and discovering the trumpet had slid out a ways, and her mother had to get it back in.

Between each of her teeth she still has a stitch. One showed slightly near her front tooth.

They had to remove three of her adult teeth during the surgery, and she may lose more.

Everybody is always asking, “what are you going to do about her teeth?” Tammy said.

“That is 50th on the list” of concerns, she said. “The tumor will continue to grow until she stops growing in her late 20s.”

Camryn faces two decades of surgeries to keep the tumor at bay.

“She is very tough and very brave,” Tammy said.

“I don’t like surgery at all. I don’t like it at all,” Camryn said. “I don’t like having stitches and tubes and the splint – I wanted that off so bad.”

She wore a splint on her nose for nine days so it didn’t swell and stay swollen.

As Camryn looked at photos of herself after the operation, she laughed.

“I looked like I got into a fight with my brother,” she said.

Her brother Caleb, 10, came out to talk about a series of books the two are reading about Freddy, the hamster.

“Right now, we’re reading ‘Freddy to the Rescue,'” Camryn said.

She is writing her own book, “I, William” about the cat in Freddy’s stories. She has handwritten 27 pages in pencil, complete with illustrations.

“It’s stunningly good,” her mother said.

“‘It’s phenomenal,’ you said,” Camryn countered.

Camryn goes back to Boston on Feb. 14 to have more CAT scans and X-rays and to see her doctors, including an oncologist-hematologist, Tammy said.

“Even though the tumor is not cancerous now, it could become cancerous at some point,” Tammy said.

“It could?” Camryn asked. “I didn’t know that.”

“If we make it two years without another surgery, we (Tammy and Andrew) can consider this a success We’re a strong family,” Tammy said. “I wish it was me instead of her.”

“You say that every single time after surgery. It’s crazy,” Camryn said.

Her daughter is restricted on several measures, including diet for several more weeks.

Initially, she lost 5 pounds because she didn’t want blended food.

“So doctors said we could give her soft foods or she would waste away to nothing,” Tammy said.

She has gained 1 pound and now weighs 52 pounds and stands 52 inches tall.

Her mother is considering sending her half-days to school next week, if health permits.

“She is doing so well,” Tammy said. “We really want her to stay healthy for the next six weeks.”