n HOW CAN I WORK WITH THE HEALTHCARE TEAM? Your child’s care requires a team approach. As a parent, you are a very important part of the team. Other members of the team may include doctors, nurse practitioners, nurses, social workers, child life specialists, therapists, and others. Because you know your child better than anyone else, the healthcare team will need your help to give your child the very best comprehensive treatment. It is important to communicate openly with your child’s healthcare team. Be sure to ask your child’s doctor or nurse questions whenever you are unsure about anything. It helps to write
down your questions when you think of them. Here are some examples of questions to ask: • What is Langerhans cell histiocytosis? • Is it cancer?
• What parts of my child’s body are involved? • What group (or stage) is my child’s disease? • What treatment choices are available? • What treatment do you recommend, and why? • What risks or side effects does the recommended treatment have? • What should I do to prepare for the treatment? • What is my child’s chance for survival? • What are the chances that the disease will come back? • What long-term effects might occur as a result of treatment? Use this space to write down some other questions you may have:
n ARE MY FEELINGS NORMAL, AND WHAT CAN I DO ABOUT THEM? Hearing that your child has a serious illness can be shocking and overwhelming. At first you may not believe it, or you may hope that the diagnosis is wrong. These are normal feelings to have after the diagnosis is made. Many family members feel that they are responsible somehow for the child’s disease, or they feel guilty that they were not able to detect it sooner. It is important to remember that you could not have predicted that your child would get this disease and that you could not have prevented it from happening. This disease was not caused by anything you or your child did.
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