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Talking with your child / teen about having a brain tumor

 

Helping your child or teen understand his brain tumor can help him cope better with treatment. It is important to tell your child/teen about his tumor and answer his questions in honest, simple terms. If you do not give your child/teen the facts in words he can understand, he will be left to imagine what is going to happen. These thoughts can often be scarier than the truth.

Many different staff members will be involved in helping your child understand his disease and treatments. A certified child life specialist is one of the team members who will work closely with your family. This staff member can help the patient and siblings understand treatment and adjust to being in the hospital. Child life specialists are here to work with your child/teen and his brothers and sisters at any time during your stay.

The following ideas may help you talk with your child/teen about a brain tumor. We suggest that you use the word “tumor” openly with the patient. It will help him be more familiar with the word and more at ease when asking questions. 

Using words that your child / teen will understand

Verbal Toddler: Use words your child knows such as “boo-boo” or “owie.” Tell the child where the “booboo” is (point to your child’s head). It is OK to use the word “tumor” in front of your toddler. This will help him feel more at ease when people use the word.

Preschooler: Again, using the word tumor around your preschooler will help him feel more at ease with the word and help him to ask questions. Preschoolers should understand if you say, “Inside your head is sick,” and point to where the tumor is.

Early School-Age Child: A school-age child that has not learned about cells may understand if you say, “You have a tumor inside your brain. A tumor means something grew inside your brain that is sick and not supposed to be there.”

School-Age Child: Many children at this age have begun learning about cells. You may want to explain that a brain tumor is made up of “a group of sick cells that are all together inside the brain.”

Teens: At this age your teen may want to sit in on talks with the doctor to hear about the tumor and treatment in-depth. But, it is still important to talk about the things that are said during these discussions. As with all ages, use the correct terms for the illness and treatments.  

Keep in mind

Talking about your child/teen’s illness may bring up many questions. Talking freely with him about coming to the hospital and about his treatment can help him to cope.

At all age levels, it is important to assure your child/teen that the illness is not contagious; he cannot give it to anyone or get it from anyone else. Also, this illness is not a punishment; nothing your child/teen did or did not do could have made this illness happen.

Some brain tumors are cancerous and some are not. If your child’s tumor is cancerous, use the word “cancer” along with “tumor” so he will know the word when others say it around him. If your child has cancer, he needs to know that there are many types of cancer and each person’s cancer is different. Each cancer patient takes different kinds of medicines that work best for that person’s cancer and body type.

Questions?

The Child Life staff can work closely with your family to help your child/teen understand his brain tumor and adjust to being at St. Jude. To learn more, call the Child Life department at 901-595-3020. If you are inside the hospital, dial 3020. If you are outside the Memphis area, call toll-free 1-866-2STJUDE (1-866-278-5833), extension 3020.

This document is not intended to take the place of the care and attention of your personal physician or other professional medical services. Our aim is to promote active participation in your care and treatment by providing information and education. Questions about individual health concerns or specific treatment options should be discussed with your physician.

St. Jude complies with health care-related federal civil rights laws and does not discriminate on the basis of race, color, national origin, age, disability, or sex.

ATTENTION: If you speak another language, assistance services, free of charge, are available to you. Call 1-866-278-5833 (TTY: 1-901-595-1040).

ATENCIÓN: si habla español, tiene a su disposición servicios gratuitos de asistencia lingüística. Llame al 1-866-278-5833 (TTY: 1-901-595-1040).

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