Childhood Cancer Facts:

Childhood cancer affects 15,000 new children every year in the United States. This is about 1 in every 285 children in the US that will be diagnosed with cancer before their 20th birthday. Some childhood cancers have had advances and have high survival rates with lifelong side effects of treatment. Many childhood cancers have no had advances in treatments in decades. For this reason, children are suffering whether they live or die.

Owen's Story

Owen Obey was diagnosed with osteosarcoma, a type of bone cancer, when he was just 6 years old. Osteosarcoma is typically a disease of teenagers. His tumor was in his left femur. He had a few weeks of chemotherapy, and then had a surgery called a rotationplasty where doctors used his ankle as his new "knee." This allowed him to be a below-the-knee amputee instead of an above-the-knee amputee. It is much harder to walk and do every day activities for above-the-knee amputees. We decided to do this option over a limb salvage surgery, where they reconstruct his knee with an artificial knee, so that Owen could grow up and not have to have multiple surgeries as he grew.

Unfortunately, Owen's cancer came back at the end of his treatment, just a week before he was scheduled to finish chemotherapy. He had 2 new tumors in his arm and collarbone. The surgery to schedule this next tumor removal was delayed 4 weeks from his last chemotherapy, and in those 4 weeks his tumors grew considerably. Owen died just 9 months after this surgery. He had many rounds of chemotherapy and radiation. He had 5 surgeries. Despite all of this, Owen wanted to live. There was never a time when he felt that dying and leaving his family was better than his life, even if it involved a lot of appointments and things he didn't enjoy doing.

Owen didn't qualify for clinical trials due to his age and other factors. Childhood cancers are rare, and trials can be hard to qualify for. Other hospitals like St. Jude, MSK, Mayo, and MD Anderson didn't have anything to offer him. Owen didn't get to try immunotherapy or anything novel. He died with the same treatments that kids with osteosarcoma have been offered for the last 40 years.