My family was in the midst of a busy 1985 summer with baseball, sleepovers, camping and friends in and out of the house. My husband and I felt blessed as our three sons were growing into model teens. Life was busy, but uncomplicated. Our eldest son, Philip, required an appointment with an endocrinologist one July morning. I was horrified when the doctor diagnosed a possible brain tumor. I called my husband, and told him to meet us at the hospital. I called my business partner and told him I would be unavailable. I called a friend and asked her to pray. That day was full of doctors, tests, anxiety and confusion. I quickly found myself in an alien world and all I could do was watch and cooperate. I didn’t know my life would change forever that day as I assumed the role of patient advocate.
Having worked in several healthcare settings, I was totally unprepared for the task of becoming Philip’s advocate. Through a process of trial and error, desperation and creativity, I learned how to navigate and manage the healthcare system so that my son received the best care possible throughout his twenty-five year long illness. I learned how to research medical diagnoses and procedures. I learned how to research relevant clinical trials. I learned how to research prescribed drugs to understand the benefits, risks, complications and drug-interactions. I learned how a hospital operates and how to make it work to my advantage. I learned about alternative treatment modalities. I learned the questions to ask at a doctor’s appointment, before a test or procedure. I learned how to navigate through insurance companies to get approval for the services my son needed. I asked questions and confirmed information so that I always had a clear understanding of what was happening and why. I learned to remain calm and polite so that I could become a positive influence in working with Philip’s healthcare team.
Philip’s journey was a difficult one, but having me as his constant patient advocate gave him tremendous peace of mind. He knew that my advocacy gave him a huge advantage over other patients. Philip initiated our first end of life conversation before he turned sixteen. He wanted us to be open and honest with him. He didn’t want to live in a vegetative state. After dozens of hospitalizations, radiation therapy, three strokes, and eventually, liver failure after the medication that kept him alive destroyed his liver, he lost his twenty-five year battle in 2011. Our family misses him terribly everyday, however, we are all at peace knowing that as his constant patient advocate, I was able to get him the best care possible.