Josalyn Kaldenberg sits at her piano tapping the keys to her favorite song, “I Like Rainbows.” Months ago, the 8-year-old from Woodward, Iowa, thought she would lose her entire right arm to bone cancer.
But today, thanks to a groundbreaking procedure done at Shriners Hospital for Children, she plays on.
Josalyn is the recipient of a Stanmore expandable endoprosthesis. Her cancer- stricken humerus bone was replaced with a metal prosthesis that can be adjusted to grow as she grows.
When Josalyn’s arm began to hurt last November, doctors gave her an MRI and multiple biopsies before diagnosing her with osteosarcoma. This case is typically treated with chemotherapy and a limb salvage surgery to remove the tumor without having to amputate.
But a week before Josalyn’s surgery, doctors informed her parents that because of the atypical nature of Josalyn’s cancer, they would have to amputate from the shoulder down. The cancer had spread to her growth plates. Even if doctors salvaged the limb, the arm would not be functional – her bone would not grow with the rest of her arm.
After a second opinion confirmed the prognosis, the Kaldenbergs were burdened with the difficult task of telling Josalyn that she would lose her right arm. Still, they were determined to do all they could to prevent it.
“I was doing some research and came across an article about an expandable rod that you could replace the bone with,” said Heidi Kaldenberg, who works as a stay-at-home mom watching after Josalyn and her four younger siblings. “The article I found just happened to have one little line about Moffitt being one of only two places in the United States to use these implants.”
Heidi and her husband Norm brought that little line of hope to their oncologist, who contaced Dr. Douglas Letson, chair of the Sarcoma Department at Moffitt Cancer Center. Letson said he had performed this kind of procedure about 50 times, but only on leg bones before Josalyn.
“It’s never been done for the entire humerus before – at least in the United States,” Letson said. “I talked with (Heidi) a few days before amputation and said that we probably could save her daughter’s arm, but we would have to see if we could get these custom-made implants.”
The implants, made in Stanmore, England, are made of titanium and cobalt chrome and can be adjusted with a screwdriver to change in length.
After the implants were brought from overseas, the Kaldenbergs flew to Tampa, where Josalyn received care from Shriners Hospital for Children on campus. On May 3, Letson and USF orthopaedic surgery chief resident Dr. Eric Henderson successfully removed Josalyn’s malignant bone and replaced it with the expandable implant.
“We had to be able to take that bone out, get all the cancer out and be able to save enough function to have a functional arm,” Letson said. “It was a pretty big risk.”
The procedure lasted eight hours and included a partial shoulder replacement and a complete elbow replacement. Josalyn will have to undergo another six to eight months of chemotherapy and in one year will come back to visit Letson for her first arm lengthening.
“While she’s on chemo, her bones don’t grow too much,” Letson said. “We’ll lengthen her probably once or twice a year (after that), usually about 2 millimeters to 6 or 8 millimeters at a time.”
Josalyn’s parents said she is doing well and is on the road to recovery, showing an enduring strength while dealing with such harsh realities at a young age. Despite the risks, they felt they had no other choice but to try and save her arm, they said.
“To give our daughter the best chance that we could possibly give her was to go down that road,” said Norm, who works as head of maintenance for a local high school in Iowa.
Norm said it took an extreme leap of faith to trust Letson, whom they met for the first time the day before the procedure.
“We didn’t know who this guy was. We just trusted our doctors, who had been in contact with him, had a good feeling about it,” he said. “And it turned out for the best.”
With innovations like this, Letson said he hopes to spread the word that amputation is not the only answer for children with bone cancer.
“We hope in the future that the gold standard will not be amputation, but will be limb salvage with expandable prosthesis,” he said. “The gold standard for somebody who is an adult, it is to have a limb salvage with prosthesis, but if you are a growing child, the recommendation is an amputation, and we’re trying to change that.”