A Story Many Years in the Making

Rae, as I will call her, came into my life before I was an oncology nurse navigator and after she had already been on her health journey for most of her life.

Rae’s journey began when she was 3 years old and the first of many desmoid tumors in her brain was diagnosed. Several tumors were surgically removed from her skull. At the age of 10, her oncologist recommended testing for familial adenomatous polyposis because of its known relationship with desmoid tumors.

When Rae first came to our pediatric gastrointestinal clinic, I was the nurse who worked with her gastroenterologist. Genetic testing confirmed a diagnosis of…