Pediatric Caregiver Resources Center
When your child is diagnosed with a brain tumor, your life is instantly turned upside down. As a parent, your natural instinct is to protect your child, but a brain tumor diagnosis is something you can’t control.
Please know that you are not alone. Our resources and community of patients, survivors, and caregivers can help with information, insight, and support.
Pediatric Brain Tumor Facts
Children are not smaller versions of adults. Their bodies and brains are still developing, they have different needs, and their tumors are different too.
A brain tumor is a clump of cells in the brain that is not supposed to be there. A child’s body makes cells when they are needed for development or repair. A tumor develops when normal or abnormal cells multiply when they are not needed.
Though rare, brain tumors are the most common form of solid tumors among children under the age of 14. Childhood tumors frequently appear in different locations and behave differently than brain tumors in adults. Most pediatric brain and spine tumors are primary tumors, meaning they originated in the brain or spine. Treatment options vary and often depend on the child’s age and the type, grade, and location of the tumor. Children with tumors may also have a much better long-term outlook (prognosis) than adults with a similar condition. For more information on brain tumor types, as well as classifying a brain tumor by grade, consult our Brain Tumor FAQs.
The most common types of brain tumors in children 0-14 are gliomas, of which the majority are pilocytic astrocytoma and other low grade gliomas. For more information on specific tumors, take a look at our detailed list of brain tumor types.
Tumors are often referred to as “benign” or “malignant.” The words “benign” and “malignant” are generally used to describe how normal or abnormal the cells are when viewed under a microscope.
Malignant
Tumors with cells that appear very different than normal cells are called “malignant.” Malignant tumors are more aggressive and cancerous.
Benign
Tumors with cells that are similar in appearance to normal cells are called “benign.” In general, benign tumors are less aggressive and noncancerous.
Non-malignant
Non-malignant means the same thing as benign. When talking about brain tumors, the word “non-malignant” is usually used instead of the word “benign” because some of these tumors can cause significant symptoms that impact quality of life.
A prognosis is a prediction about the future course of the disease and the likelihood of recovery. Prognosis is based upon many factors, including the type of tumor, its location and grade, the length of time your child has exhibited symptoms, the speed of growth, and treatment options. The age of your child and the extent to which the tumor has affected your child’s ability to function are also important factors.
Because there are so many unique factors with each case, it is important to talk with your child’s healthcare team to better understand his or her condition and prognosis.
After a Pediatric Brain Tumor Diagnosis
The process of discovering that your child has a brain tumor is overwhelming and emotional. We have detailed information on the process of diagnosing a brain tumor so that you can better understand what is happening.
Impact on the Family
When a child has a brain tumor, it affects the entire family. Emotions can be raw. Stress and anxiety levels rise. Here you will find information on family communication, managing stress, and getting support.
Returning to School
A study found that less than half of kids’ brain health evaluations were used in schools. This shows how important it is for parents to stand up for their kids.
Set up regular meetings with your child’s teachers to check on them. Ask about behavior, tiredness, frustration, and sadness.
Talk to your child often and pay attention to changes in how your child thinks, feels, and acts.
Is your child newly diagnosed? Start here.
We’ve put together a few first steps to help you navigate the brain tumor journey with your child. This free “Newly Diagnosed Toolkit” has what you need to get started, including diagnosis, treatment, tumor-specific information for some tumor types, and tips on caregiving.
Webinar: Adolescent and Young Adult Brain Tumors
Our Support Services are 100% free for patients and caregivers
CareLine
800-886-ABTA (2282) 8:30 AM-5:00 PM CST or info@abta.org
- Information on treatment and care
- Finding brain tumor treatment centers
- Financial assistance resources
- Finding clinical trials
Support Groups
From diagnosis, surgery, and treatment side effects, to recovery and for some—recurrence—you may feel anxious and isolated. Support groups can improve your emotional well-being and quality of life. Virtual and in-person options.
Patient & Caregiver Mentor Support
Our Mentor Program offers patients and caregivers the opportunity to connect with someone who has gone through a similar brain tumor diagnosis, treatment, and care.
Financial Support
Being diagnosed with a brain tumor takes a toll on the patient and their family physically, emotionally, and financially. Medical bills and related costs can quickly add up. We have a list of resources to help.
Webinars
The free educational webinar series is an excellent resource for brain tumor patients and caregivers to learn more about brain tumor types, treatments, well-being topics, and research updates from nationally recognized experts.
Educational Resources
- About Brain Tumors
- Questions to Ask Your Doctor
- Tumor-specific educational materials
- Caregiver Handbook
- Clinical Trials
and more
A Future Without Brain Tumors Relies on Your Unwavering Support
The need to accelerate groundbreaking research and expand patient care services has never been greater. Brain tumors remain incredibly difficult to treat due to the blood-brain barrier and its profound resistance to standard treatments. While progress has been made, more must be done.
