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Most recently updated on April 10, 2013
Your child’s doctor probably explained the exact facts related to your child’s tumor, but you may still be in shock and what he said may not make sense. The Web site addresses the most common questions about brain tumors in the young, including medical information and practical suggestions. The diagnosis also has an emotional impact on the entire family. There is information here to help you and your family cope with the stress of a chronic disease that may involve intensive treatments, frequent visits to the doctor and hospital, interruptions in school and social activities, physical change, and—perhaps most frightening of all—uncertainty about the future.
It’s important to remember that you are your child’s best advocate. It’s up to you to make sure that your child receives the best care our medical system has to offer. It’s difficult to handle this responsibility alone, so you may want to enlist the help of a relative or friend who will encourage and support you.
Part of your role will be ensuring that everything necessary will be done for your child. Learn to ask questions—and to listen carefully to the answers. Bring paper and pen or a tape recorder to help you remember all that is said. If you don’t understand a word or medical term, ask your child’s doctor or nurse for a better or simpler explanation. Find out what literature is available and read about your child’s condition. If you’re well informed, you’ll feel more comfortable making decisions, asking questions of health care professionals, and you’ll have less fear of the unknown. It often helps to have a family member or friend review the information with you or join you for the discussions with your child’s doctors.
Many parents have found that keeping a medical journal can be helpful. By always carrying a notepad and pencil, you will be able to write down the names, contact information and specialties of the many medical professionals you will meet. You can take notes on what the healthcare team is telling you and keep a list of questions you would like to ask. Many parents find that keeping a journal of your child’s day-to-day care, in which you take notes, record your child’s progress, and note any concerns, can be an effective way to have all important available facts at a glance. Another section in your journal can list all medications and their dosages, so you can easily monitor what treatment has been given and when. By keeping an account of your child’s treatment, you can also notice any possible side effects that occur. Knowing your child's medical history is important now and in the future.
Try to collect copies of your child’s scans (computed tomograph [CT] scans, magnetic resonance imaging [MRI] scans, and so on) and medical records. Extra copies can easily be made for you at the time the films are taken. You can also ask physicians to provide you with copies of all reports and to have them sent to your child’s pediatrician. You and your child may need to see specialists in several locations, and sometimes files can get misplaced in busy medical centers. It is helpful to keep them together if you need to seek another opinion or if your child requires urgent care elsewhere.
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