Life After a Brain Tumor Diagnosis

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When a child finishes treatment for a brain tumor, the journey has only begun. It’s important for parents, caregivers, and survivors to plan for the months and years ahead.


Returning to School

Treatment for a brain tumor may require your child to miss school for weeks or longer. There are steps you can take to make your child's return easier.

Start Planning Early

When your child is diagnosed with a brain tumor, it is important to talk with your child’s healthcare team as soon as possible about the plan to return to school. Questions to ask include:

  • When should my child go back to school?
  • How should I talk to the school about my child’s brain tumor diagnosis and treatment?
  • What are the steps for getting my child back into school?

Some healthcare teams have a staff member called an education coordinator or a school reintegration specialist. This staff member can act as an advocate for your child with the school. 

Key Steps to Take

  • Ask your child what they think about going back to school. When do they feel ready to go back? What your child thinks about going back to school is important in deciding when they should return.
  • While your child is in treatment, ask the school if learning in your home or the classroom is best for your child.
  • Before your child goes back to school, work with the school to create a plan of action for what they want to do when your child first returns and a plan for what they want to do in the future to help your child.
  • Talk to the school about creating a plan that includes actions the school must take to help your child succeed. Two plans created by federal law are called a Section 504 Plan and an Individualized Education Plan (IEP). The school will help you decide which plan is best for your child.
  • After your child returns, school staff should check in with your child to see how well they are doing in school and make changes to the plans as needed.
  • Work with the school to pick a time to talk to the staff and classmates before your child goes back. This can help the other children understand why your child was absent, any changes to the way your child looks, and why your child might need extra help at school.
  • Ask your child’s school to assign a person (a “liaison”) to help share information between your family, the school, and your child’s medical team to make sure the best decisions are made about your child going back to school.
  • Remember that you are the best person to ask questions and ensure all of your child’s needs are met at school.

Talking to Your Child About Going Back to School

Many children have questions or are nervous about going back to school after treatment. Age-appropriate videos can help you talk to your child about their feelings and fears. In the following video from the Pediatric Brain Tumor Foundation’s Imaginary Friend Society, Shelly the Turtle shows kids what the first day back may look like.

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