This year marks the 25th anniversary of my daughter Katie’s passing. In 1999, Katie was twelve—a gifted student, athlete, and violinist. Unbeknownst to us, she was fighting osteosarcoma, a rare bone cancer. Our days blurred with doctor visits and treatments, leading to surgery. I kept asking myself—why Katie? In June, she turned thirteen, and by July she underwent an amputation of her left leg. Despite aggressive therapies, the tumor above her knee remained. When told about the amputation, Katie raised her arms and cheered, “YES!” Her optimism surprised us, but it was rooted in hope—she’d read about a Notre Dame basketball player with a prosthetic leg. Katie’s positivity lifted everyone around her. She encouraged others not to give up, believing we should keep one foot in reality and the other in hope.
Facing the Challenge
Over Labor Day weekend, at her first post-surgery oncologist visit, Katie learned there was no cure—the cancer had spread to her spine. The day after, she told her medical team, “I get it, everyone dies. I want to be a pioneer in the quest for a cure!” Her attitude motivated us. Thanks to our doctors, we found two orthopedic surgeons at the Mayo Clinic willing to operate on Katie. Surgery seemed our only hope. We made a pact: in recovery, I’d squeeze her hand to signal the tumor was gone. When I did, a single tear rolled down her cheek. For a moment, we believed we’d overcome the worst.
The Battle Continues
Treatment options in the early 2000s were limited. Katie entered a clinical trial at Mayo Clinic but could not complete it. We returned home, and in 2001, doctors found a tumor in her neck. It multiplied rapidly—nineteen tumors crushed her bones throughout her body. With no curative options left, Katie focused on two goals: turning fifteen and receiving an honorary law degree. Surrounded by loved ones, she celebrated her birthday, telling me, “Mom, I’m not going to die.” She passed away at 7:00 AM the next morning. Her presence was felt in the auditorium as I accepted her honorary degree. I told graduates they had a special angel whispering—Never give up! After Katie’s death, I became an advocate for childhood cancer research, visiting legislators and fundraising to elevate awareness about this disease.
Osteosarcoma Research and Progress
In the years after Katie’s death, I closely followed osteosarcoma research. For a long time, progress was slow. Osteosarcoma still presents more questions than answers—not what any parent wants to hear. Osteosarcoma is a rare cancer, affecting about three people per million annually in the United States. It primarily strikes children, teens, and young adults, especially during growth spurts. Despite its rarity, it is the most common primary bone cancer in young people.
According to the Osteosarcoma Institute, there have been no new treatment options approved for osteosarcoma in close to 40 years.
Recently, scientific progress has been made. Surgical techniques have improved, and targeted therapies for genetic mutations are emerging. Immunotherapy is being explored, offering hope for personalized treatments. While advances have been made, many challenges remain, and ongoing research is essential for improving outcomes for young people diagnosed with osteosarcoma. It takes more than hope to eradicate childhood cancers, the reality lies in the science!
A Call for Action
Twenty-five years after Katie’s passing, a colleague faced similar obstacles with her son’s osteosarcoma. His recent death left me saddened and frustrated. More than two decades later, his mom confronted the same challenges I did. We must keep pushing forward—research is crucial for young people living with rare cancers. Katie once said in a video, “If children really are the future, people should put their money where it will do the most good.”
In the weeks before her death, Katie confided, “I am not afraid to die. I’m afraid people will wake up the next day and say, ‘Katie, who.’” She never gave up—only her body did.
Supporting Childhood Cancer Research
As we observe National Childhood Cancer Awareness Month, let’s unite and support accelerated research so every child diagnosed with cancer has the chance for a better outcome. The journey is long, but hope and science together can lead to real progress. We owe it to Katie and every child to keep striving for better treatments, more answers, and ultimately, cures.
Beth Westbrook, Katie’s mom
