Gainesville Daily Register

October 7, 2012

Valley View Elementary student doesn't let amputation alter her life

By DELANIA TRIGG, Register Staff Writer
Gainesville Daily Register

Valley View — Cydney Wolfenbarger is no ordinary girl.

But don’t tell her that.

The ten-year-old Valley View Elementary student can do everything any other child can do including completing the obstacle course at “M-o-o-ving Thru’ The Mud With Landon” — a fundraiser held at Circle N Family Dairy last May to raise money for the medical foundation Hope for HH.

The brown-eyed petite girl who loves swimming, performs in children’s theater and is a fan of the Junie B. Jones book series looks no different from her classmates until she rolls up her pant leg to reveal a prosthetic limb personalized with watermelon-patterned fabric.

The decision to have her lower left leg amputated was Cydney’s, her mother Eva Wolfenbarger said. But the surgery wasn’t something anyone took lightly.

The procedure came nearly a decade after Cydney’s diagnosis with neurofibromatosis — a genetic disorder in which tumors grow in the central nervous system.

Maybe it was a mother’s intuition, but when Wolfenbarger found a lump on her then-six-month-old daughter’s calf she knew the spot was something serious — something life changing.

“I called Cydney’s doctor’s office and her regular doctor wasn’t available,” Eva said. “I talked to (her doctor’s colleague) and that doctor basically blew me off. He said, ‘If you can get her here tomorrow before eight, I’ll see her before my other patients and you’ll see this is nothing serious.’”

That initial examination marked the beginning of a change in Cydney’s life.

“When he felt the lump in Cydney’s leg, you could literally feel all the happiness being sucked out of the room,” Wolfenbarger said. “He said, ‘This wasn’t caused by trauma.’”

The doctor ordered x-rays and Eva, waiting nervously beside her daughter, asked the radiology technician what he saw in the stark, almost ghostly black and white films.

“He looked at me and said, ‘I don’t know what it is,’” Wolfenbarger recalled. “I was devastated.”

Cydney was scheduled for more diagnostic procedures at Cook Children’s Medical Center in Dallas.

Her worst fear, Wolfenbarger said, was that her daughter had some type of cancer.

Wolfenbarger remembers Cydney’s diagnosis was an overwhelming relief to her and her husband, Olin Wolfenbarger.

Neurofibromatisis is something Eva Wolfenbarger knew a lot about. Members of her family including her mother and sister have battled the condition. She knew the tumors can eventually become malignant but she also knew Cydney’s chances for a full and productive life were excellent.

“The doctor was telling me Cydney has neurofibromatosis, and I was so happy,” she said. “She was beginning to think I didn’t understand how serious the condition is, and she told me she was concerned about my reaction. I told her, ‘You’ve just told me my daughter will live. She doesn’t have to have surgery today. She’ll be okay.’”

Cydney’s treatment would be a combination of preventative measures and observation.

The tumor on Cydney’s calf couldn’t be removed, and the doctor told Wolfenbarger her daughter’s leg would eventually break at the site of the lesion and the fracture would require complex surgery.

“It wasn’t a matter of if her leg broke. It was a matter of when,” Wolfenbarger said.

Cydney received treatment at Cook Children’s and at Scottish Rite Hospital. To further complicate matters, the little girl was also diagnosed with pseudoarthrosis — a medical condition in which bone fractures do not heal properly.

Still, Cydney was far from preoccupied with her health. She lived an ordinary life with her mother, father and siblings.

A fall years after her  initial diagnosis caused Cydney’s leg to break. She was reaching for something in her closet, getting ready for church on a quiet Sunday.

Her injury didn’t seem severe.

Wolfenbarger said, at first, she wasn’t certain her daughter’s leg was broken.

Cydney could still walk, her leg supported by a brace she wore daily.

“But she was in pain,” Wolfenbarger said. “She cried all through church.”

It wasn’t until doctors took a look at Cydney’s leg that Eva realized how severe the break was. Cydney’s doctor grasped the little girl’s foot and tugged it gently.

“The foot went this way and her leg went this way,” Eva said, making a twisting motion with her hands.

Surgeons inserted steel rods into Cydney’s leg to try to coax the bones back together.

Cydney began to joke about the hardware in her calf.

“She would say, ‘My screw is loose, get it? It means I’m crazy.”

But the rods wouldn’t stay put, and Cydney required additional surgeries to replace and reset the rods.

After yet another failed medical procedure Wolfenbarger said her daughter had had enough.

“She said, ‘I don’t think I want to have another surgery,” Wolfenbarger said. “We were at school— I work at Valley View school — and she said, ‘My leg hurts. The rod is poking out again!’ I was crestfallen. She had told me she didn’t like her leg sometimes....It hurt. And she was uncomfortable a lot.”

Cydney had already begun thinking about amputation. She knew the surgery would bring an irreversible loss but she weighed the loss of a limb against the pain and the disappointment as surgery after surgery failed to mend her leg.

Having the limb removed seemed like a viable option.

Cydney and her parents didn’t make the decision without thought and prayer.

Wolfenbarger said Cydney asked what she would do if she were in Cydney’s place.

“I told her I would make the decision and ask Heavenly Father if it was a good one,” Wolfenbarger said.

Cydney took her mother’s advice. She prayed.

“Jesus, Heavenly Father, told me it was good to get my leg amputated,” Cydney said.

The couple did what they could to prepare Cydney for the surgery and its aftermath.

Cydney spoke with a child psychologist. She talked to her doctors and she became friends with another amputee — Valley View resident and emergency medical technician Marnie Smith.

“Marnie’s been great,” Eva Wolfenbarger said. “When she talked to Cydney about amputation, I asked her to tell the truth. She didn’t sugar coat it. And once the decision had been made, Marnie went up to the school in her firefighter gear and talked to the kids. She said, ‘Cydney will look different but she’ll be the same person she was before.’”

“And she showed us her prosthetic leg,” Cydney’s brother Evan Wolfenbarger said. “People were like, ‘Wow!’”

Smith’s kindness didn’t stop with the school visit.

“On Cydney’s first day back at school, Marnie rolled in with Cydney. They were both in their wheelchairs,” Evan said.

Cydney’s surgery went well but the healing process played tricks on her brain.

“She had phantom pain. Her toes were cramping,” Eva Wolfenbarger said. “After her leg healed enough to touch, we would rub it. You have to teach the brain that the leg is not there.”

Cydney also had to learn to deal with strangers’ reactions to her amputation.

Friends and family were a small army of supporters — fiercely protective of Cydney — but trips to places such as the movie theater or a store were challenging.

“Little kids get scared. They ask their mother what happened to Cydney’s leg,” Wolfenbarger said. “And the mother will shush the child and try to look away.”

She said she sometimes explains to children that Cydney’s had a surgery called an amputation and that the surgery made Cydney feel better.

“The little kids just accept it but the parents usually want to apologize,” she said.

Good intentions aside, pity is the last thing Cydney and her family want.

“She’s a typical ten-year-old girl,” Wolfenbarger said. “She’s like everyone else.”

Cydney’s situation has changed but she isn’t broken and except for occasional adjustments, life goes on as usual for the Wolfenbargers.

Like Cydney, her family has learned to laugh at a lot of things they might once have feared including finding a prosthetic limb in an unexpected spot.

“Oh my gosh, it hurts when you trip over her leg in the floor at night,” Evan said.

“I have to remind Cydney to put her leg in a place where she can find it every day,” Eva Wolfenbarger added. “I’ll say, ‘You can’t leave your leg lying around just anywhere.’”

On a summer swimming trip, Cydney’s prosthetic limb became buoyant.

“My leg was floating to the top of the water and I was going under the water,” Cydney said, laughing.

Cydney’s prosthetic limb is a replica of her own calf and foot.

“She can even paint the toenails,” Evan said, pointing out the green glittery polish on Cydney’s prosthetic toes.

Doctors adjust the limb as Cydney grows but the apparatus will have to be replaced several times before she reaches her adult height.

The cheerful fabric cover was Cydney’s choice.

Far from limiting her mobility, her prosthetic limb allows Cydney to do things she’s always loved including swimming.

She’s been through a lot and continues to thrive but Cydney said she doesn’t think of herself as a hero or role model.

She said she can’t imagine why her amputation is a big deal to anyone.

“I think of myself as a normal person,” Cydney said. “I’m nothing special....Now I just don’t get hurt on my left leg.”

Her brother agrees.

“It’s just so normal,” he said. “She’s just Cydney.”