It is important to defy any urge you have to shield your child from the truth, because honesty is one of the most important gifts you can give him. Your child needs to know what is happening now and what is to come. Because you are coping with a bewildering array of emotions yourself, sharing information and providing reassurance and hope may be difficult. In the past, shielding children from the painful reality of cancer was the norm. Most experts now agree that children feel less anxiety and cope with treatments better if they have a clear understanding of their illness. It is important to provide age-appropriate information soon after diagnosis and to create a supportive climate so children feel comfortable asking questions of both parents and the medical team. Sharing strengthens the family, allowing all members to face the crisis together.

When to tell your child

You should tell your child as soon as possible after diagnosis. Sick children know they are sick, and all children know when their parents are upset, frightened, and withholding information. In the absence of the truth, children imagine—and believe—scenarios far more frightening than the reality. With no warning, they have found themselves in strange surroundings; all of their normal activities stop occurring; total strangers are performing scary and painful procedures on them; their parents are upset; and everywhere they look, they see sick or disabled children. They may not be talking about their fears, often in an effort to protect their parents, but they know something is very wrong.

The most loving thing a parent can do is to tell the truth before the child is overwhelmed by the fear of what she has imagined. Staying silent has another side effect: it undermines the credibility of the parent with the child. This will be a very long and frightening journey, and your child must believe you are in this together and that she can always count on you to support her and tell her the truth.

Who should tell your child

Who tells your child about his illness is a personal decision, influenced by the age and temperament of the child, religious beliefs, and sometimes physician recommendation. Children ages 1 to 3 usually fear separation from parents, so the presence of strangers in an already unfamiliar situation may increase their anxiety. Many parents tell their small child in private, while others prefer to have a family physician, oncologist, social worker, member of the clergy, or other family members present. Many children’s hospitals have child life specialists who can help explain the diagnosis and treatment to children in an age-appropriate manner. They can help you develop a strategy to speak with your child about the diagnosis. Often, they have age-appropriate materials (books, pictures, dolls) to help with the conversation.

Children ages 4 to 12 sometimes benefit from having the treatment team (neurooncologist, nurse, social worker, child life specialist, or psychologist) present. It provides an opportunity to promote the sense that everyone is united in their efforts to help your child get well. Staff members can answer the child’s questions and provide comfort for the entire family. Children in this age group frequently feel guilty and responsible for their illness. They may harbor fears that the cancer is a punishment for something they did wrong. Parents, social workers, psychologists, child life specialists, and nurses can help explore unspoken questions and provide reassurance.

Adolescents have a powerful need for control and autonomy that should be respected. At a time when teens’ developmental tasks include becoming independent from their families, teens with cancer are suddenly totally dependent on medical personnel to save their lives and on parents to provide emotional support. Teenagers sometimes feel more comfortable discussing the diagnosis with their physician in private. In some families, a diagnosis of cancer can create an unwelcome dependence on parents and can add new stress to the already turbulent teen years. Other families report that the illness helped forge closer bonds between teenagers and their parents.

Children and teens react to the diagnosis of cancer with a wide range of emotions, as do their parents. They may lapse into denial, feel tremendous anger or rage, or be extremely optimistic. As treatment progresses, both children and parents often experience a variety of unexpected emotions.

What to tell your child

Children need to be told that they have a tumor in their head or spine and what that means, using words and concepts appropriate for their age and level of emotional development. The sooner they are comfortable with the word tumor, the less mysterious it will seem and the more powerful they will feel in dealing with the disease. Very young children might be satisfied to hear, “A tumor is growing in your head and it should not be there. We are going to the hospital so the doctors can take it out.” Older children may benefit from reading books, alone or together with a parent; surfing reliable Internet sites; or asking members of the treatment team questions to get the information that matters most to them.

Key concepts to convey to your child include:

• The disease is called a brain (or spinal cord) tumor and this is what it means (supply age-appropriate description).
• No one knows what causes brain tumors, and it is not the child’s fault she got sick.
• Some things about brain tumors are scary—for the child and the parents—and it is okay to feel afraid, confused, angry, or sad.
• It may be necessary to spend a lot of time in the hospital.
• There might be some unpleasant side effects, such as hair loss and nausea, but most of them are temporary.
• The parents, the child, and the healthcare team all have jobs to do to help the child get well, and everyone will work together to make that happen.
• Questions or worries are normal, and the child should feel free to ask a parent or someone on the healthcare team any questions she wants to ask.
• There are many things you as parents cannot control, but you will never lie to him and will always try to make sure there are no surprises.
• School-age children might not be able to go to school for a few months, but there are ways they can keep in touch with their classmates while they are out of school.
• Cancer is not contagious; friends and family cannot catch it.

Children will have many questions throughout their treatment. Parents must assure the child that this is normal and that they will always answer the child’s questions honestly. Gentle and honest communication is essential for the child to feel loved, supported, and encouraged.

When your child asks a question, take a moment to be sure you heard and understood it correctly and to formulate a thoughtful answer that your child will understand. Parents are under tremendous stress and have many things on their minds. In this distracted state, it is easy to toss off an easy answer or answer a question the child did not ask; but doing this can increase the child’s confusion and undermine their trust in the parent as a source of information. Barbara Sourkes, PhD, explains the importance of understanding the child’s question before responding: