No one is ever prepared to hear that their child has a life-threatening illness. At first, parents may be afraid their child is going to suffer and perhaps die. At the very least, they know their family will go through major changes and upheaval. Some have described feeling numb or as if they have been hit over the head.
Parents also report feeling confused or being unable to hear, remember, or think clearly when the doctor explains their child’s diagnosis or treatment plan. This numbness is normal. It helps them slowly get used to the painful feelings. It gives parents time to absorb and face strong emotions and hard decisions.
- Knowing that this reaction is normal.
- Seeking comfort from one another or from other family members or friends.
- Talking with the team social worker or nurse about their feelings.
- Asking a family member or friend to go with them to doctor visits and take notes.
- Recording (with permission) or taking notes at important meetings, then going back over them with others.
- Reviewing information given to them by the treatment team.
- Asking staff to repeat information.
- Remembering that feelings of shock will pass with time.
Disbelief and denial
When parents are first told their child has cancer, it might seem unbelievable. Their child may not seem sick enough, or look sick enough, to have such a serious disease. They may question whether the lab could have made a mistake or if the test results really belong to another child. They might want to check on the reputation of the staff or medical center. They may wonder if the medical staff knows as much as they should, and may decide to get a second opinion (which is always a good idea).
The disbelief or denial that strikes at first can help buffer and delay painful feelings. It’s also a way for parents to gain time to adjust to the reality of their child’s diagnosis and do what it takes to be sure their child will get the best treatment. Some denial is normal and not a problem unless it keeps a child from getting timely treatment.
What can help parents get through the disbelief stage?
- Asking and getting answers to all your questions.
- Calling the American Cancer Society or other reliable sources for more information about diagnosis and treatment.
- Checking on the reputation of the medical center and qualifications of the treatment team.
- Asking for help in getting a second opinion.
Fear and anxiety
It’s normal to feel anxious and fearful when facing unfamiliar events and outcomes that can’t be controlled. And nearly everyone has a fear of cancer. A family’s only encounter with cancer may have been with an older family member (when it might have seemed a little easier to accept or understand). Or they might have heard stories about the problems other family members or friends had with certain treatments, or that having cancer is a death sentence.
Doctors cannot guarantee exactly how each person will respond to cancer treatment, and the fear of death is real. Trusting the knowledge and skill of others to protect the life of someone you love is frightening. Protecting a child is the normally a parent’s job. Now parents must trust others to take care of their child. That can be very hard to do.
Major changes in daily life are upsetting, too, and parents worry that they might not be up to all that will be asked of them. They could also be worried about their child getting through treatment and how it will affect their child’s body and self-esteem. Fear of intensive treatment, of an uncertain future, and of the unknown are all normal.
What can help parents cope with fear?
- Getting accurate information.
- Developing trust in treatment team members.
- Openly discussing fear and anxiety with cancer treatment team members.
- Using or learning strategies to reduce anxiety or tension.
- Listening to how other patients and parents have coped.
- Taking as much control as possible of everyday events and decisions.
- Accepting that some things cannot be controlled.
- Finding strength in religious beliefs or spiritual practices.
Feelings of guilt often come up soon after parents accept that their child has cancer. Parents have the major task of protecting their child from danger. They may question what they might have done that caused their child to have this life-threatening disease. Could this be “payback” for past mistakes? The result of drug or alcohol abuse? Has their smoking caused the cancer? Mothers sometimes wonder if something they did or failed to do during pregnancy might have made a difference.
Those with a family history of cancer might think that one parent or the other has “bad” genes. They may question the safety of where they live, their water supply, or wonder about toxins in the environment or in their home. They may wonder whether something related to their jobs might have caused the cancer.
Parents also voice guilt about not paying enough attention to their child’s symptoms. They worry that they didn’t get to the doctor quickly enough, or that they didn’t demand to have a specialist see their child when the symptoms didn’t go away. It’s normal to try to understand the causes of a problem, but the fact is that right now no one knows exactly what causes most cancers.
Parents are not at fault for their child’s cancer. If parents feel guilty, they need to talk to someone on the cancer treatment team about their concerns. It’s important that they do not let guilty feelings distract them from the many tasks they must face when their child has cancer.
What can help parents deal with guilt?
- Talking with their child’s cancer treatment team about feelings of guilt.
- Getting answers to their questions about the causes of cancer.
- Making changes to create a healthier home environment if this is a concern.
- Talking with other parents of children with cancer.
- Accepting that they may never know what caused their child’s cancer.
- Realizing that finding a reason for something isn’t going to change the fact that it has happened.
Sadness and depression
Of course parents feel sad when their child is diagnosed with cancer. Every parent has hopes and dreams that their children’s lives will be healthy, happy, and carefree. Cancer and its treatment change that dream. Parents will grieve for the loss of some of those hopes. In grieving, they may feel hopeless about their child’s recovery.
They’re also sad when they think about the hard days of treatment that lie ahead. The intensity of their feelings often matches their child’s outlook for recovery, but it also reflects their own temperament and personality. One parent may be more naturally optimistic, while another may react to any life problem with more fear of bad outcomes.
Parents may find it hard to eat or sleep at first. They may not have the energy they need for routine daily tasks or for facing all they need to do. Parents often report feeling overwhelmed. Unfortunately, parents cannot be spared these painful and unpleasant feelings and will have them again and again throughout their child’s illness.
But parents and families usually find a way to adjust to the changes in their lives. They usually find ways to maintain some quality of life for themselves, the rest of their family, and their sick child during this time.
What can help parents deal with sadness, depression, and grief?
- Finding ways to express their feelings, such as talking, writing, and/or letting themselves cry.
- Asking for support from each other, family, or friends.
- Using support from social workers, counselors, nurses, psychologists, and doctors.
- Seeking spiritual support, getting guidance from pastors, rabbis, or other clergy; using prayer, meditation, or other spiritual practices.
- Taking care of themselves: eating right, getting rest, and caring about how they look.
- Attending to their own needs, whether those needs are for medicines or other help with physical and/or mental health.
The fact that cancer is threatening the life of an innocent child often makes parents angry at the cruel and random injustice of life. When someone we love is attacked, even by illness, it’s easy to want to blame someone, or ask “Why me?” or “Why us?”
This anger is sometimes directed at the doctors who found the cancer or who explained the treatment plan. Others rage at and question a world in which children become ill and suffer and die. Parents also feel upset, knowing the things their child will face, like tests and painful procedures.
The daily frustrations of dealing with a large and complex health care system, strange places, and many different care providers can also trigger anger. Parents may resent one another over past or current issues that now affect their child’s treatment. Anger also may be directed at family or friends who make thoughtless remarks or who are too busy to provide support. Allowing this stress to build up and explode into an angry outburst is not helpful for others or the child.
Parents are sometimes surprised and guilt-ridden to notice that they are angry with the sick child whose illness is causing so many problems or who’s not cooperating with the doctors and nurses. Some parents hide their anger or even deny that they feel that way, believing that such feelings are “not nice.”
Others express their anger in explosive and hostile ways, taking it out on other people. Sometimes other children in the family become convenient targets for that anger. Since parents and the care providers must work together to help the child or teen deal with cancer and its treatment, it’s important to find healthy ways to express anger. It’s also important to find healthy ways to resolve valid complaints.
What can help parents deal with anger?
- Accepting that anger is a normal part of this process.
- Understanding the root of the anger in each situation.
- Expressing anger in a healthy way.
- Finding solutions when anger is justified.
- Discussing angry feelings with support staff or mental health care providers.
- Seeking physical release of tension (such as walking, exercising, or sports).
- Finding private space to vent feelings by shouting, screaming, or crying.
- Expressing feelings by keeping a journal.
- Talking with other parents who have dealt with feelings like this.
- Letting anger go, accepting that there may be no one to blame, and finding ways to use the energy to help themselves, their child, and their family.