Medical terminology can be hard for laypeople to understand. We can help you learn the language so you can communicate clearly with your child’s medical care team.
No parent is prepared to hear that their child has a brain or spinal cord tumor. It’s important to recognize that nothing you did as a parent led to your child’s diagnosis.
The specter of a brain tumor diagnosis can be overwhelming. All at once the triumphs and trials of everyday existence hold little importance. Learning more about your child’s tumor can empower you to move forward and take an active part in selecting which approaches will result in the best care for your child.
Talking with your doctors and nurses will help them handle your concerns about your child’s health. One of the best ways to communicate with medical care team is to ask questions. Because time is often rushed during medical appointments, it’s helpful to prepare in advance questions you might want to ask about the diagnosis, treatment plan, hospital and more.
Facing a Diagnosis
If your family is facing a new diagnosis of a childhood brain or spinal cord tumor, the PBTF provides a toolkit designed to help you partner with your child’s healthcare team and organize medical information. The Starfolio is a binder filled with basic information on childhood brain tumors and templates and tools to track treatment and care. Call our Family Support team at 800-253-6530, x306 or email to order your free Starfolio.
When your child is diagnosed with a brain tumor, you’ll probably hear a lot of unfamiliar medical terminology. There’s much to learn about the situation, including treatment options and the effects of those treatments. Get answers to frequently asked questions here. >>
Questions to Ask
It’s important that you comprehend your child’s disease and treatment options so that you can be an effective advocate. Knowing what questions to ask will lead to increased understanding. Find a list of key questions to ask your child’s medical team here. >>
Knowing what to expect on a variety of fronts, including palliative care and how siblings cope, will help you take charge and best support your child and family. Explore the next steps of your child’s journey here. >>
In our Family Support Learning Series videos, leading brain tumor experts discuss topics such as clinical trials, genetic susceptibility and molecular testing. The series includes more than two dozen brief videos with user-friendly, relevant information for families and friends of young brain tumor patients. Videos from two of the PBTF’s recent conferences for parents and survivors are also available. Watch and learn. >>