There you stand, either in the pediatrician’s office or the emergency room, receiving the most horrific news imaginable that being the news that your child has a life threatening disease.
As most doctors do they tell you they are going to give you and your family a moment to digest what you have just been told. As you then look upon your child, who is looking up at you, confused and scared, you are hit with a barrage of questions. Why, how, and what next?
After the doctors have concluded the seemingly endless barrage of tests on your child, he/she and the rest of the medical staff give you the infamous “road map.” This road map is supposed to tell you how your child will be treated depending on their disease and the severity of said disease. Often this road map leaves you with more questions than answers.
Then your child is finally released from the hospital and sent home to await your next visit to the surgical room, infusion center, and clinic for labs or wherever your chemotherapy and/or radiation treatments are conducted. It is this down time that a familiar question comes floating back into your mind…. What next?
What next? Information gathering, entrust your child to the doctor, pray to God? It is imperative to learn as much about your child’s illness as possible. Learn the affects, side effects, pros and cons of each drug used. Do not be afraid to question everything the medical staff is doing. If it doesn’t make sense, ask for explanations, clarification and reconfirm with other medical staff. Do not overlook your parental instincts after all, you know your child the best and do not allow someone else to tell you otherwise. At first they may try to back you down or appease you and may even try to confuse you with medical jargon, but soon they will realize that you are not the kind of parent that sits on the sidelines and gives the doctors carte blanche in the faith and trust department. It is only through this vigilance that your child will receive the best treatment possible. You must be your child’s patient advocate.