Talking to Children, Teens About Brain Tumors

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When a Parent has a Brain Tumor: Helping Children and Teens Cope

How do I tell the kids? What do I say?

A brain tumor diagnosis has a profound effect on the family, and it can be particularly difficult to know the right way to help children and teens cope. The rapid onset of the disease, followed by treatments, potential periods of stability, and the possibilities of deterioration and death are difficult for adults, let alone children, to comprehend.

Sometimes caregivers think the best strategy is to shield children from knowing about the disease, but this can cause emotional problems in a child that can emerge as seemingly unrelated behaviors. Whether you tell them or not, children will know something is going on, and rather than making them feel safe, this can lead to them feeling alone and excluded while their imaginations run wild with worst-case scenarios.i

Overall, the best strategies include:

You know your child best

A child's age and emotional development make a difference in how he or she perceives information about illness. Young children will need less information than older children.

However, you and their other caregivers know your child better than anyone. Although this is likely the toughest issue they've had to deal with, think about how they react in other situations. Do they cry? Get angry? Act out? Withdraw? What helps calm and soothe them? Recall other crises in the family and how they were handled. Did the child get forgotten? Did he or she have their needs met? How would you handle things differently now?

Take time to listen

Ask them what they already know about brain tumors and dispel any myths they have heard.

When you tell your children about the brain tumor, ask them what they already know. Maybe another family member has recently gone through cancer and treatment. Perhaps the child has a friend whose parent has gotten sick, or they've seen something on TV. Kids will go back to those memories for reference, so listen carefully to what they say. It's a good opportunity to dispel any myths that they may have about cancer, brain tumors, treatment, and illnesses in general.

Reactions may be difficult to understand

Children and teenagers may have many different reactions during different stages of the disease. They may seem uninterested, afraid, guilty or angry. A preschooler may return to bedwetting, act exceptionally clingy or experience nightmares. A school-age child may react with stomachaches and an unwillingness to go to school. A teenager may become uncharacteristically withdrawn or anxious. Whatever their reactions, it helps when you acknowledge and validate that what they are experiencing is normal. Tell children that you also have a wide range of feelings.

Above all, reassure your children that they are loved and will always be taken care of.

Words to say during the different stages of a brain tumor

Diagnosis
  • For young children
    • A brain tumor is a lump in the brain that doesn’t belong there. The doctor is going to operate and take it out. The operation will help get rid of [the patient’s] symptoms.
    • With the tumor in there, the computer center of the brain doesn’t work the way it’s supposed to. That’s why [the patient] gets headaches and seizures.
    • No one knows what causes a brain tumor. They just happen. But we do know that nothing you did, or thought, or said, caused the tumor. Nothing you ever wished made this happen. Nothing your brother or sister or friends said made this happen.
    • We also know that you don’t “catch” brain tumors from other people. They just happen. You won’t catch a brain tumor from [the patient].
  • For older children
    • A brain tumor is a collection of abnormal cells in the brain which are growing out of control. These cells were originally normal brain cells. For no good reason, they started to divide and make more of themselves. This growing collection of cells is called a tumor.
    • As the cells continue to make more of themselves, the tumor gets bigger and bigger, like a balloon inflating. Since there isn’t a lot of extra room in the brain, the tumor may start to squish areas of the brain, causing them not to work properly.
    • The doctor does not have a prognosis yet – that’s a prediction of what will happen to the [patient] because of the brain tumor.
  • For teens, use your best judgment. Most teens will want and appreciate detailed, accurate information. You will want to explain:
    • A brain tumor is an abnormal mass of tissue or cells growing in the brain.
    • The tumor is benign, meaning it’s not cancer, but it’s still pressing on the brain or the tumor is malignant, which means that it is cancer.
    • The pressure on the brain from the tumor can cause [the patient] to lose important brain functions. They’ve done an MRI and the general location of the tumor is [show teen brain anatomy and point out where the tumor may be]. The doctors aren’t sure yet what changes that will cause.
    • [The patient] is going to need brain surgery by a neurosurgeon to remove the tumor.
    • We don’t know the prognosis yet. After surgery we will know more.
Tests, treatment and side effects
  • For young children
    • The doctor wants to do some tests to find out why [the patient] is having headaches.
    • A neurosurgeon is a doctor who knows a lot about the brain.
    • During surgery, the neurosurgeon will open [the patient’s] head and try to remove the tumor. It won’t hurt [the patient], but [he/she] will need to stay in the hospital for a while.
    • An MRI scan takes pictures of your brain, but it can’t see what you are thinking.
    • Chemotherapy is also called “chemo.” [The patient] will go to the hospital [every day, every week] to get medicine that will try to kill the bad cells in the brain tumor. The chemo might make [the patient] tired, or feel like throwing up, or both. It also may cause [the patient] to lose [his/her] hair, but it will grow back.
    • Radiation therapy is another way to kill the bad cells in the brain tumor. [The patient] will go to a machine that uses energy rays to try and kill the bad cells. The machine won’t hurt [the patient] but [the patient’s] hair might fall out near where the tumor is. (You can modify this statement if the patient is taking chemo via pills at home.) [He/she] might also not feel like eating, or feel tired.
    • [The patient] will have some side effects from treatment. Side effects are problems caused by the medicine and treatments. Our doctor told us that [the patient] might feel [describe what the doctor has told you].
    • Help your child learn how to handle a seizure

      [The patient] may have a seizure. A seizure is when a person’s body begins to shake all over, and it seems like they don’t have control of their body. It happens all of a sudden, and can look scary, but it’s not dangerous.
    • Because these treatments are all connected to [the patient’s] brain, it might cause some changes in [the patient]. You know how you use your brain to walk and talk and think? The tumor or the medicines might cause changes in [the patient’s] brain. [He/she] may start to have trouble moving or talking. [His/her] personality may change, and [he/she] might not remember things as well. [Describe what the doctor has told you].
  • For older children and teens
    • [The patient] will need surgery to remove the brain tumor. [The patient] will be in the hospital for a while afterwards to recover. It may be a tough recovery. [Describe what the doctor has told you]. After the surgery, we’ll talk with the doctors to see if [the patient] needs further treatment to reduce the tumor.
    • Chemotherapy is also called “chemo.” It’s a treatment that uses drugs to kill cancer tissue. (You can discuss here whether and how often the patient will need to go to the hospital for chemotherapy treatment, or if the patient will be taking the chemo in pill form at home). Chemotherapy causes some side effects that might be hard for [the patient]. [He/she] might lose hair, which will grow back, experience nausea and vomiting, get mouth sores, feel tired (fatigue), and could have a greater chance of getting infections. The doctor told me that [the patient] might experience [describe what the doctor has told you].
    • Radiation therapy is a treatment that uses high-energy rays to kill cancer cells. This treatment is given by a machine or by materials put in or near the tumor. [The patient] might lose hair where [he/she] is being treated, and might have trouble eating. [He/she] might also feel tired.
    • [The patient] is going to participate in a clinical trial. That means [he/she] will be part of a research study that uses volunteers to compare new treatments with the standard or usual treatments.
    • [The patient] may start to feel and act much differently than usual. The tumor and the treatment both affect the brain, so they may affect the parts that affect [his/her] physical movement and thinking. That means [he/she] could have trouble walking, talking, and [his/her] personality may change. It could also affect memory. [Describe what the doctor has told you].
End of life and bereavement

Talking about the potential death of a parent or loved one is incredibly difficult. With brain tumors, loved ones often go through the stages of grief before the patient has died, called anticipatory grief, especially if the patient has lost significant cognitive function.

Read more about the process of loss and grieving.

The American Cancer Society has a comprehensive guide communicating to children when a parent is dying. The materials answer questions such as how to explain death to young children, and how much to involve children in the actual event of death. They also cover how to communicate to children at different ages.

Involving children in caregiving

As the disease progresses, the demands on your time, emotional energy and reserves will increase. While you should involve your children in helping to care for the patient, it is also important to help maintain your own routines as well as routines for children. That may mean having to hire outside care so you are able to care for yourself.

Changing roles

In some families, especially those with traditional gender-defined roles, children may take on parental roles. If the father is ill, the oldest son may feel the need to take on some traditional “fatherly” roles, or even drop out of school to take on a job. Or, the oldest daughter may take on the responsibilities of an ill mother, without other family members examining how they can help.ii

Other families may feel the need to “protect” children by not allowing them to help the sick parent, while still others may feel that the children, especially teenagers, aren’t doing enough.

What work, and how much, should children do?

Instead of allowing children to “fall” into specific roles, take a proactive approach. Discuss how your family can share in the care of the patient. Some tips:

  • Establish time-limited boundaries for caregiving, so children don’t feel trapped into the role i.e. "We will need you to watch your siblings every Monday for the next six weeks while your father receives radiation."
  • Include grandparents, friends or other family members when possible. (Read more about how to ask for help in the section Getting the Help You Need)
  • Children, even those as young as five, should be familiar with how to deal with an emergency.

  • Children, even those as young as five, should be familiar with how to deal with an emergency. This will include how to handle a fall or a seizure. While caregivers may be concerned that making an emergency plan will scare children, it often has the opposite effect of helping the child feel more in control.iii This emergency plan for a seizure can be helpful for child or adult caregivers.
  • As much as possible, try to balance helping the patient with allowing children to spend time with their friends. If you reach a point where you need help, consider getting help from the outside.

 

i Rolland J. Families, Illness and Disability: An Integrative Treatment Model. New York, NY: Basic Books;1994:222
ii Rolland J. Families, Illness and Disability: An Integrative Treatment Model. New York, NY: Basic Books;1994:224
iii Rolland J. Families, Illness and Disability: An Integrative Treatment Model. New York, NY: Basic Books;1994:225

Related Resources

Downloadable resources about youth and caregiving

Downloadable resources about youth and caregiving

A list of free, downloadable resources about youth and caregiving from the American Association of Caregiving Youth

Helping children when a family member has cancer

Helping children when a family member has cancer

The American Cancer Society’s guide to helping children when a family member has cancer

When Your Parent Has Cancer

When Your Parent Has Cancer

A guide for teens: When Your Parent Has Cancer

Kids Konnected

Kids Konnected

Cancer support and materials for children, teens and parents from Kids Konnected.