Coping and support

Here are some suggestions to help guide your family through your child's brain tumor treatment.

At the hospital

When your child has medical appointments or stays in the hospital:

• Bring a favorite toy or book to office or clinic visits, to keep your child occupied while waiting.
• Stay with your child during a test or treatment, if possible. Use words that he or she will understand to describe what will happen.
• Include playtime in your child's schedule. Major hospitals usually have a playroom for children undergoing treatment. Often playroom staff members are part of the treatment team, with training in child development, recreation, psychology or social work. If your child must remain in his or her room, a child life specialist or recreational therapist may be available to make a bedside visit.
• Ask for support from clinic or hospital staff members. Seek out organizations for parents of children with cancer. Parents who have already been through this can provide encouragement and hope, as well as practical advice. Ask your child's doctor about local support groups.

At home

After leaving the hospital:

• Monitor your child's energy level outside of the hospital. If he or she feels well enough, gently encourage participation in regular activities. At times your child will seem tired or listless, particularly after chemotherapy or radiation, so make time for enough rest, too.
• Keep a daily record of your child's condition at home — body temperature, energy level and sleeping patterns, as well as drugs administered and any side effects. Share this information with your child's doctor.
• Plan a normal diet unless your child's doctor suggests otherwise. Prepare favorite foods when possible. If your child is undergoing chemotherapy, his or her appetite may decrease. Make sure fluid intake increases to counter the reduction in solid food intake, and get the advice of a registered dietitian to be sure your child gets sufficient nutrients and calories.
• Check with the doctor before any vaccinations, because cancer treatment affects the immune system.
• Be prepared to talk with your other children about the brain tumor. Tell them about changes they might see in their sibling, such as hair loss and flagging energy, and listen to their concerns.