Stories of progress, inspiration, and information in overcoming osteosarcoma.

Turning Odds Into Opportunity: Josie’s Osteosarcoma Story

When 9-year-old Josie was diagnosed with osteosarcoma, her family faced tough choices and a long recovery. Now they’re focused on helping her regain movement and strength after a rare surgery.

When 9-year-old Josie began complaining of intermittent nighttime arm pain in January 2024, her parents assumed it was growing pains. When arm pain started cropping up during the day, they figured it stemmed from their active daughter falling when she was skating or riding a scooter.

On May 5, the pain was bad enough that Josie’s father took her to urgent care, where she was diagnosed with an “old” humerus fracture.

Then a flip into the pool in June left Josie inconsolable, and her shoulder was swollen and felt warm. Her parents thought her shoulder might be dislocated, so they went to the emergency room. Instead, X-rays showed possible signs of cancer.

“Nothing made sense, and I was in denial of it being anything other than a healing fracture,” says Josie’s mom, Kathy Jo Carstarphen, MD.

An MRI showed that it was likely cancer, and a biopsy confirmed the diagnosis.

“We were devastated, and as a physician, I was utterly ashamed that I had missed all the warning signs of this deadly and aggressive cancer growing on my child for five months,” Kathy Jo says.

Chemotherapy Begins Right Away

Josie started chemotherapy a week after her diagnosis. The first chemo treatment took a lot out of her, and she lost 20 pounds.

Josie was able to have the remaining five chemo treatments in an outpatient infusion center, with IV fluids at home and daily labs in the clinic. “Being home for her treatments was such a blessing,” Kathy Jo says. “Doing the chemo in the home helped her to gain some weight back, get better sleep, and be comforted by her pets.”

Aggressive Surgery to Remove the Cancer

Josie’s family explored their options with four orthopedic oncology surgeons and decided on a total humerus replacement limb salvage surgery, the most aggressive option. Experts told Josie and her family that she would have little to no use of her arm, and that she was lucky to even have an arm after having a rare cancer, in a rare location, treated by a rare surgery.

Around this time, Kathy Jo connected with The Osteosarcoma Institute Director Lee Helman, MD, through OSI Connect, a free resource that pairs osteosarcoma patients, families, and caregivers with leading experts who can offer insight on treatment options and next steps. The meeting renewed Kathy Jo’s confidence in the family’s treatment plan.

“Meeting with Dr. Helman was so validating and encouraging. I felt so lost prior to meeting with him, but hearing his input on our journey ... made me feel infinitely better.” —Kathy Jo, Josie's mom

“Meeting with Dr. Helman was so validating and encouraging,” she says. “I felt so lost prior to meeting with him, but hearing his input on our journey and the validation about the work we put into finding the right surgeon made me feel infinitely better.”

That encouragement helped Kathy Jo turn her focus toward what came next: finding the right rehabilitation plan to help Josie regain as much movement as possible.

Later, a connection made at an MIB FACTOR conference led Kathy Jo to find an occupational therapist, whose comprehensive rehab plan could help Josie.

Josie’s rehab includes occupational therapy, massage therapy, acupuncture, swimming, and sleeping in a splint. She also runs for cardio exercise and goes to play therapy for mental health.

“I pick her up from school, we drive straight home where there is a therapist waiting for us and someone coming right behind that one. Then we do homework, she gets screen time, and it is bedtime. That is what it is going to be for the next year. And it is almost all cash. My retirement fund is going into rehabbing Josie’s arm,” Kathy Jo says.

Solid Gains Through Rehab

After only a few months, Josie has made tremendous progress. Her arm hangs naturally rather than staying bent at 90 degrees, and she can lift a rod and catch a ball with both hands.

“She has to have her body back, because living a life with a contracted arm means contracted other muscles and inability to work or be independent. I do not want that for her,” Kathy Jo says. “We do not know what this cancer is going to do in the next decade, but I do not want her to lose her life to trauma and chronic pain.”

Despite the uncertainty, Kathy Jo focuses on what Josie can achieve today. Each week brings a little more motion, a little more strength, and a little more confidence in what’s possible.

“Josie’s arm is going to be what she and we as a family put into it,” she says. “We are not giving up on her journey of living the fullest life she can.”