After a full assessment at Packard Children’s, Katie was diagnosed with a rare and rapidly growing tumor, called undifferentiated sarcoma, in a bone in her lower left leg called the tibia. The tumor made her tibia bone frail and at risk of fracture. A team led by Packard Children’s oncologist Neyssa Marina, MD, prepared Katie and her family to begin treatment in mid-October. Katie’s preoperative chemotherapy would be followed by surgery, followed by more chemotherapy after her recovery.
“I was kind of scared,” recalls Katie. “I never really knew anyone with cancer. I knew it was bad, but I wasn’t really sure what to expect. I didn’t know any of the terms or what would happen.”
Katie’s health care team helped explain everything and shared books that would help her understand her diagnosis and treatment. “I really liked my doctors and nurses. And I met other kids in the hospital who were my age and going through the same thing. That helped a lot.”
Each round of chemotherapy would last three weeks. There was a possibility that the initial round of chemotherapy would clarify the boundaries of the tumor, in which case Katie would have some surgical options.
Dr. Lawrence Rinsky, Chief of Orthopedic Surgery at Packard Children’s, specializes in these options and spoke with Katie at length about what each option meant, what would happen and what it would hold for her future. Her options ranged from one of several “limb-sparing” procedures to amputation. Katie was interested in a “rotation-plasty” which would reconstruct her lower leg and knee using her own bone, muscle and tissue.
But Katie’s tumor proved undaunted by chemotherapy and was too close to the nerve to risk a rotation-plasty procedure. Though it seems counter-intuitive, keeping her own limb wouldn’t allow Katie the freedom of movement that she really wanted to get back out and play. Limb-sparing results are delicate, restrict patients to the most limited functionality, and require several follow-up surgeries. Patients who undergo amputation, however, rarely need additional surgeries, and with sophisticated advances in prosthetics, can walk well and play most sports. Best of all, amputation would restrict the cancer from spreading. “I didn’t like the idea of having to have more than one surgery,” said Katie, “and I wanted to stay as active as possible. Amputation was really the best choice.”
“She did an incredible job of accepting her situation and making the best of the outcome,” said Dr. Marina. “As a doctor, you have to figure out who your patient is and help them cope in their own manner. That is the art of medicine. There isn’t one outcome that’s best for everyone. A doctor’s role is to support a patient’s preferred outcome.”
Katie and her mom, Aecha
Katie’s parents, Aecha and Donald, gave her strong support. “We were so blessed that we had never needed a hospital before,” said Aecha. “But when we did need care for Katie, we were so grateful to be at Packard Children’s.”
Understandably, Katie’s cancer and treatment changed her life. “The whole experience has brought me more than it has taken away,” says Katie, who is now cancer-free. “I’ve gained lifelong friendships, have incredible opportunities, and know what I want to be because of this: an oncology nurse.”
But with several years between Katie and nursing college, she’s focusing on high school, socializing, and the active life she enjoys. “This is my first year ever playing golf,” says Katie. “And I love it. The girls are super-nice and we just go out and have fun.” Katie still plays tennis, and loves running and dancing.
“I’m grateful for our wonderful experience at the hospital,” says Aecha, “and grateful that my daughter can hold her head so high. We wouldn’t have wanted to be treated anywhere else.”