Victor Girl Undergoes Major Craniofacial Surgery to Save Her Sight

May 26, 2009

Tea will be at the Telethon Sunday, May 31, to share her story and celebrate her 13th birthday.

Today Tea Papke is a sixth grader at Victor Intermediate with three years of experience in all-star cheerleading under her belt and a heart of gold. However, if her father hadn’t happened to bend down as Tea stood up six years ago, Tea’s life could have taken a completely different turn: she could have gone blind.

When Tea was 5 she banged into her father’s glasses and he noticed an unusual bump and grew concerned. The Papkes took Tea to a dermatologist, who opted to leave the bump alone, since it wasn’t hurting Tea. A year later, she complained of an aching pain around her eyes during a first-grade eye test.

The Papkes went back to the dermatologist, who recommended Tea’s pediatrician, Kevin Klossner, M.D., of the Penn-Fair Pediatric Group perform a CAT scan, which combines special x-ray equipment with sophisticated computers to get clearer images of internal parts of the body. A few days later, Klossner called Amy and revealed Tea’s diagnoses: fibrous dysplasia.

Fibrous dysplasia is a genetic disease in which bone is progressively replaced with a softer expansible bone. This condition is extremely rare and there is no known cure. The tumor-like growth is generally benign, but locally aggressive, which means it would grow significantly if not removed. Klossner recommended the Papkes go to John Girotto, M.D., a pediatric plastic surgeon who specializes in craniofacial anomalies and Howard Silberstein, M.D., a pediatric neurosurgeon, both at Golisano Children’s Hospital at the University of Rochester Medical Center.

“We figured we’d have to go out of town for a plastic surgeon and a neurosurgeon,” said Amy. “Most people don’t think of Golisano Children’s Hospital until their child has been there.”

Girotto found Tea’s tumor was growing inward, toward her optic nerve. Because Tea’s monostotic fibrous dysplasia was only in one bone, if the surgeons removed enough around the area of the tumor, Tea would be in the clear. If it wasn’t removed, however, the tumor would compress Tea’s optic nerve and blind her. Girotto explained that the tumor would also continue to grow as a deformity that eventually covered Tea’s entire face and that it could potentially cause brain damage. Leaving the tumor alone was no longer an option –  it had to be removed.

Girotto was joined by Silberstein. The doctors told the Papkes about the procedure and what to expect. Tea and her family are “delightful folks,” said Girotto, but he also sympathized with what they were going through. Girotto expressed that naturally, any parents would be upset if a neurosurgeon and a plastic surgeon said their little girl had to undergo massive reconstructive surgery to remove a tumor moving toward her brain. Tea’s parents did not want to worry Tea with scary details about the operation, but the first-grader was insistent. “Going through a situation like this made her grow up faster,” said Amy.

On April 8, 2004, the day of Tea’s operation, Tea, her parents and her brother were joined by Tea’s grandparents and other local family members. Tea’s aunt from South Carolina also made the trip up to offer her support. Tea was given a sedative and Amy carried her daughter into the operating room. As Tea sat on the operating table with a mask over her nose, she held her mother’s hand until she fell into a deep sleep.

Tea underwent the day-long procedure and Girotto and Silberstein proceeded with the huge coordinated team effort while the Papkes anxiously waited with other families for their children, who were all undergoing equally nerve-racking operations. “We all comforted one another,” Amy explained.

Silberstein was careful to get the brain and skull out of the way while Girotto removed the tumor and reconstructed the eye socket and part of the forehead. Once the operation was over, Tea was taken to the pediatric intensive care unit, where she rested for about a week. She recovered at home for a week and then returned to school a few hours a week until she was ready to go back to full days of school.

Now fully recovered, Tea has grown into a compassionate young lady. “We gave her some money for Christmas. She figured out how much money she had to give and decided to donate all of it. I explained, ‘Well, you really don’t have to give away all of your money,” Amy chuckled. Tea has also donated her hair to “Locks of Love” twice and assists with a special needs cheerleading team at Premier Cheer, where she is a cheerleader.

Tea still visits Girotto about once a year for a CAT scan to make sure there is no leftover soft tissue that could grow into a larger problem. “It’s been five years and I haven’t seen anything yet, so I guess we did a pretty good job,” Girotto said.

Amy finds a lot of comfort in having a hospital with such highly-qualified health care professionals so close to home. She explained that the Papkes often run into Silberstein at their local ice cream store in Victor and see Girotto out as well. Amy finds it amazing that with so many patients, both doctors still remember Tea by name. Tea is doing great and the Papkes have found solace in knowing that such a rich resource lies right at their door steps.

Join Tea and her family for Miracle Weekend

The 13th annual Stroll for Strong Kids and 5K Run will take place 9 a.m. to 1 p.m. Saturday, May 30, on the Wilson Quad at the University of Rochester. This year’s event is sponsored by M&T Bank. For more information or to sign up for the Stroll or the new 5K this year, please visit www.gchas.org.

The Papkes, along with four other special Miracle Kids and their families, will share their remarkable stories at the annual telethon on 10NBC, live from the Strong Memorial Hospital lobby, 10 a.m. to 1 p.m., and 7 to 11 p.m., Sunday, May 31. Tea will also be celebrating her 13th birthday at the event. The telethon is sponsored by Perkins Restaurants. To make a pledge during the event, please dial (585) 241-KIDS or log on to www.gchas.org.

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