How to talk with your child about a brain tumor

You don’t have to have all the answers when your child is the patient, but it can be helpful to have conversations. Most medical teams have a social worker or child life specialist who can help explain the diagnosis, tests, and treatments in a way your child or teen will understand. Accurate information presented in a non-threatening, age-appropriate way help them better cope with tests and treatments.

Create an atmosphere where your child will want to ask questions or return to the topic whenever new questions or concerns arise. Some children will want lots of details, others will not. Follow your child’s lead.

Discussing the diagnosis, tests, and treatments is also an important opportunity to reassure your child or teen. Children and teens often have surprising misconceptions:

• “It’s my fault.” – This illness is not the result of something you did or did not do. It is not related to your behavior or your thoughts. It is not a punishment.
• “It’s contagious.” – A tumor is not contagious. You cannot “get it” or “give it” to anyone.
• “It has changed me.” – You are still you. Having a tumor in your brain does not change who you are. It also does not change our love for you.

Be prepared for difficult questions, including “Am I going to die?” Be honest and direct. Tell your child that everyone is different and reacts differently to the illness and the treatment. The medical team is doing everything they can to make the illness go away.

How to talk to siblings of a brain tumor patient

When a child has a tumor, the impact of the situation quickly extends to the entire family. Routines are disrupted. Priorities are shuffled. Parents are pulled away from other day-to-day activities to attend to the needs of the child. Necessity can require brothers and sisters to be left in the care of other family or friends.

Siblings can feel confused, neglected, and guilty. In the rush of medical needs, it can be easy to short-change conversations with brothers and sisters. But even at an early age, children sense when there is something wrong. They may even think that they created the problem. Keeping them informed helps them feel connected to their sibling. Your goal is to provide honest, age-sensitive information.

Tips for communicating with siblings of a child diagnosed with a brain tumor:

1. Address their fears and concerns: Common misconceptions arise among siblings, too. “Can I catch it?” “Did I cause it?” “Will I get it?” The social worker or child life specialist on your healthcare team can help you communicate effectively with your other children.
2. Engage them: The treatment process can be lengthy. Siblings can feel as if all the attention and energy is spent on just one child in the family. Once the immediate crisis passes, find ways to reconnect. Share a meal, a goodnight book, or a conversation while driving. Focus on quality, not quantity. Even if you have just a little time to spare, devoting your undivided attention to others in the family will make a difference.
3. Involve them: Oftentimes, brothers and sisters want to help. They want to visit the hospital, send cards, or organize a bake sale to raise money for research. Encourage their impulse to help whenever you can. It will give them a concrete way to process their own emotions and to demonstrate some small measure of control over what is happening in their lives.

Managing stress in family relationships

Difficult times can bring out the best in relationships, but that is not always the case. A crisis and its aftermath can strain healthy relationships and expose cracks in struggling relationships.

Whether you are married or divorced, maintaining a relationship with a co-parent can be difficult while caring for a child with a brain tumor. Issues you have struggled with in the past can return. Guilt, anxiety, exhaustion, and stress can complicate relationships even further.

Try to maintain communication and honor the experience of others going through the situation. Be open and honest with your healthcare team regarding relevant family history, custody and other emotional concerns that may spill over into the care environment.

Be aware that problems can also emerge in other family relationships, including those with extended family members, in-laws, and step-families. Each person has a legitimate interest in the child and the child’s treatment, but it can be frustrating and time-consuming to communicate with each of them. Consider designating a close friend or other family member to serve as a “spokesperson,” keeping everyone informed and updated.

Get support from someone on a similar journey

Sometimes the best support comes from someone who can relate to what you’re going through. The ABTA can help connect you with other parents who are in a similar situation through our online support community or our mentorship program. It is comforting to talk to other parents about the challenges they have overcome and to share practical advice, insight, and friendship.

Take care of yourself

If you are the primary caregiver, you have a lot to juggle. It is critically important that you care for yourself so that you have the energy to care for your child and handle the changes coming your way.

Learn more about caring for the caregiver in our Caregiver Resource Center.

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