The shock of diagnosis results in an overwhelming number of intense emotions. Cultural background, individual coping styles, basic temperament, and family dynamics all affect an individual’s emotional response to stress. There are no set stages of response, and parents frequently find themselves vacillating from one emotional extreme to another. Many of these emotions reappear at different times during the child’s treatment. All of the emotions described below are normal responses to a diagnosis of cancer in a child.

The emotional responses of children and teens are discussed in Chapter 21, Communication and Behavior.

Confusion and numbness

In their anguish, most parents remember only bits and pieces of the doctor’s early explanations of their child’s disease. This dreamlike state is an almost universal response to shock. The brain provides protective layers of numbness and confusion to prevent emotional overload. Pediatric oncologists understand this phenomenon and are usually quite willing to repeat information as often as necessary. Children’s hospitals have nurse practitioners, physician assistants, nurses, and child life specialists who translate medical information into understandable language and answer questions for both parents and children. Do not be embarrassed to say you do not understand or that you forgot something you were told. It is sometimes helpful to write down instructions and explanations, record them on a small audio recorder or smartphone, or ask a friend or family member to help keep track of all the new and complex information. These notes can be transcribed and kept with the written materials you receive from the medical providers so you can refer to them later.

Denial

Denial is when parents simply cannot believe that their child has a life-threatening illness. Denial helps parents survive the first few days after diagnosis, but gradual acceptance must occur so the family can make the necessary adjustments to accommodate cancer treatment. Life has dramatically changed. When parents accept what has happened, understand their fears, and begin to hope, they are better able to advocate for their child and their family. This process takes time.

Guilt

Guilt is a common and normal reaction to a diagnosis of childhood cancer. Parents sometimes feel they have failed to protect their child, and they blame themselves. It is especially difficult because the cause of their child’s tumor, in most instances, cannot be explained. There are questions: How could we have prevented this? What did we do wrong? How did we miss the signs? Why didn’t we bring her to the doctor sooner? Why didn’t we insist that the doctor do a scan? Did he inherit this from me? Why didn’t we live in a safer place? Was it because of the fumes from painting the house? Why? Why? Why? Nancy Roach describes some of these feelings in her booklet The Last Day of April:

It may be difficult to accept, but parents need to understand that they did nothing to cause their child’s illness. Years of research have revealed little about what causes childhood solid tumors or what can be done to prevent them.

Fear and helplessness

Fear and helplessness are two faces of the same coin. Nearly everything about this new situation is unknown, and what parents do know—that their child has a life-threatening illness—is too terrifying to contemplate. Each new revelation about the situation raises new questions and fears: Can I really flush a catheter or administer all these drugs? What if I mess something up? Will I be fired if I miss too much work? Who will take care of my other children? How do I tell my child not to be afraid when he can see I am scared to death? How will we pay for this? The demands on parents’ time, talents, energy, courage, and strength are daunting.

A child’s diagnosis strips parents of control over many aspects of their lives and can change their entire world view. All the predictable and comforting routines are gone, and the family is thrust into a new world that is populated by an ever-changing cast of characters (interns, residents, fellows, pediatric oncologists, surgeons, nurses, social workers, and technicians); a new language (medical terminology); and seemingly endless hospitalizations, procedures, and drugs. This transition can be hard on all parents, particularly those who are intimidated by doctors and medical environments, and those who are used to a measure of power and authority in their home or workplace.

Parents often feel utterly helpless. For example, physicians they have never met are presenting treatment options for their child. Parents are also faced with the fact that they cannot do anything that will take away their child’s illness or make everything better, and parents’ inability to relieve their child’s suffering can lead to feelings of great helplessness. Even if parents are comfortable in a hospital environment, they may feel helpless because there is simply not enough time in the day to care for a very sick child, deal with their own changing emotions, educate themselves about the disease, notify friends and family, make job decisions, and restructure the family schedule to deal with the crisis.

Many parents explain that helplessness begins to disappear when a sense of reality returns. They begin to make decisions, study their options, learn about the disease, and become comfortable with the hospital and staff. As their knowledge grows, so does their ability to participate constructively as members of the treatment team (for more information, see Chapter 11, Forming a Partnership with the Treatment Team). However, do not be surprised if feelings of fear, panic, and anxiety erupt unexpectedly throughout your child’s treatment.

Anger

Anger is a common response to the diagnosis of a life-threatening illness. It is nobody’s fault that children are stricken with solid tumors. Because parents cannot direct their anger at the cancer, they may target doctors, nurses, spouses, siblings, or even their ill child. Because anger directed at other people can be very destructive, it is necessary to find ways to express and manage the anger.

Expressing anger is normal and can be cathartic. Trying to suppress this powerful emotion is usually not helpful. Some suggestions from parents for managing anger follow.

Anger at the healthcare team:

•  Try to improve communication with the doctors. Scheduling time to talk away from your child’s bedside may make it easier to have a more in-depth discussion.

•  Discuss your feelings with one of the nurses or nurse practitioners.

•  Ask the hospital social workers for advice on how to productively address your concerns if you become angry or frustrated with members of the medical staff, your insurance company, or others involved in your child’s care.

•  Talk with parents of other ill children, either locally or by joining an online support group.

Anger at family:

•  Exercise a little every day

•  Do yoga or relaxation exercises

•  Keep a journal or make an audio recording your feelings

•  Cry in the shower or pound a pillow

•  Listen to music

•  Read other people’s stories about childhood cancer

•  Talk with friends

•  Talk with parents of other ill children in person or online

•  Try individual or family counseling

•  Live one moment at a time

Anger at God:

•  Share your feelings with your spouse, partner, or close friends

•  Discuss your feelings with clergy or church, synagogue, or mosque members

•  Know that anger at God is normal

•  Pray or meditate

•  Give yourself time to heal

It is important to remember that angry feelings are normal and expected. Discovering healthy ways to cope with anger is vital for all parents.

Sadness and grief

No one is prepared to cope with the news that their child has cancer. Intense feelings of sorrow, loss, and grief are common, even when the prognosis is good. Parents often describe feeling engulfed by sadness. They fear they may simply not be able to deal with the enormity of the problems facing their family. Parents grieve the loss of normalcy and realize life will never be the same. They grieve the loss of their dreams and aspirations for their child. They may feel sorry for themselves and may feel ashamed and embarrassed by these feelings.

Parents travel a tumultuous emotional path where overwhelming emotions subside, only to resurface later. All of these are normal, common responses to a catastrophic event. For many parents, these strong emotions become more managable as hope grows.

Hope

After being buffeted by illness, anger, fear, sadness, grief, and guilt, most parents welcome the growth of hope. Hope is the belief in a better tomorrow. Hope sustains the will to live and gives us the strength to endure difficult times. Hope is not a way around; it is a way through. Many children survive childhood cancer and live long and happy lives. There is reason for hope.

Many families discover a renewed sense of both the fragility and beauty of life after the diagnosis. Outpourings of love and support from family and friends provide comfort and sustenance. Many parents speak of a renewed appreciation for life and feel like each day with their child is a precious gift.

A Japanese proverb says: “Daylight will peep through a very small hole.”