TAMPA — Josalyn Kaldenberg will get back to playing the piano soon.
But for now, the 8-year-old is focusing on simpler tasks — such as relearning how to lift her arm and squeeze a ball.
It has been one week since a Tampa surgeon removed the bone of her upper right arm because of the cancerous tumor that had taken it over. Other doctors had declared she'd have to lose her entire arm.
But at Shriners Hospital for Children in Tampa, the Iowa girl's humerus bone, along with her shoulder and elbow joints, were replaced with a prosthesis that will be expanded as Josalyn grows. It's the first full replacement of a humerus bone with an expandable prosthesis in the United States, her surgeon said.
"Our goal is to have her back to playing the piano again," said Dr. G. Douglas Letson, who performed the surgery.
Josalyn was diagnosed with osteosarcoma in December, after she developed pain so severe, she would scream if anyone touched her arm, said her father, Norm Kaldenberg.
It is rare for someone Josalyn's age to develop osteosarcoma, which is more commonly found in teenagers, or in adults in their 60s and 70s.
Since the 1990s, doctors have been able to treat most bone tumors by replacing part or all of the affected bone with a prosthesis.
But Josalyn's case presented some unique challenges. For one, she was just 8, with lots of growing left to do. And, unlike most cases where the tumor is isolated to part of the bone, Josalyn's tumor was spread throughout the bone and into the surrounding muscles.
Norm and Heidi Kaldenberg said doctors at Blank Children's Hospital in Des Moines, Iowa, told them that Josalyn's right arm would have to be amputated. Doctors at the Mayo Clinic in Minnesota said the same thing, her parents said.
"We kept searching for alternatives because we needed to know we did everything we could," Heidi Kaldenberg said.
Internet research eventually led them to Letson, who heads Moffitt Cancer Center's sarcoma program. They learned he had performed limb-salvaging surgeries using prostheses that could be expanded as children grew — though never one involving the entire humerus.
Four days before Josalyn's scheduled March 8 amputation, the Kaldenbergs told their doctor in Iowa about their research. From there, things moved quickly.
Their doctor contacted Letson, who agreed to do the procedure for free. Letson contacted Stanmore Implants, a British medical device maker, about building an expandable prosthesis for Josalyn. The doctors worked with Iowa Medicaid and Shriners Hospital about paying for the prosthesis and hospital costs, which Letson estimated at $50,000 to $60,000.
Numerous fundraisers in their hometown of Woodward, Iowa, have helped pay for the Kaldenbergs' other expenses, including airfare and their hotel stay in Tampa.
The Kaldenbergs — along with Josalyn's 11-week-old sister — arrived here on Easter Sunday. Letson met with them the next day.
A day later, he performed the eight-hour surgery. He made a long incision from Josalyn's right shoulder down to her elbow. He removed her humerus and shoulder and elbow joints, detaching the muscles and installed the prosthesis.
Letson said the surgery was a success, and Josalyn's prognosis to beat the cancer and regain most of the strength in her arm is excellent.
He said he hopes that such procedures become the standard of care for children with bone tumors, the way they have become for adults. Moffitt is one of only a few facilities in the country that do limb-salvaging procedures using expandable prosthesis, he said. (Josalyn's surgery was done at Shriner's because Moffitt is an adult hospital.)
When the family returns to Iowa next week, Josalyn will continue her chemotherapy treatments that began in late December. When she regains her strength, she'll begin physical therapy.
As she grows, Josalyn will need to return to Tampa every year or two so Letson can lengthen her prosthesis. He will make a tiny incision in her arm, right where the implant is adjusted, insert an Allen key and turn it clockwise.
"It doesn't hurt anymore,'' Josalyn said at a news conference Tuesday, her right arm in a black sling. She sat on her father's lap, occasionally reaching out to play with baby sister Layna, who sat quietly on her mother's lap.
Her two brothers and her other sister, ages 18 months to 6 years, are being cared for by grandparents in Iowa.
Heidi Kaldenberg, 31, homeschools her children and teaches them piano. Norm Kaldenberg, 32, is head of maintenance at a local high school. He and Josalyn's 6-year-old brother shaved their heads in solidarity when Josalyn lost her hair to chemotherapy.
Josalyn eagerly showed off how she already can open and close her right hand and move her wrist. She talked shyly about getting back to doing what she loves —- riding her bike, hanging out with her best friend and playing the piano.
Richard Martin can be reached at firstname.lastname@example.org or (727) 893-8330