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.
When I left the doctor’s office, I was a mass of hysteria. I couldn’t breathe and felt as if I was suffocating. Tears were flowing nonstop. I had lost total control of myself and had no idea of how to stop my world from turning upside down.
For a brief moment I stared at the doctor’s face and felt totally confused by what he was explaining to me. In an instant that internal chaos was joined with a scream of terror that came from some place inside me that, up until that point, I never knew existed.
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.
I walked into the empty hospital playroom and saw my wife clutching Matthew’s teddy bear. Her eyes were red and swollen from crying. I had no idea what had happened. A minute later the doctor came into the room with several residents [doctors who are receiving specialized training]. He told me that Matthew had cancer and that he was very sick. I remember thinking that there had to have been a mistake. Maybe he was reading the wrong chart? My initial reaction was that it was physically impossible for one of my children to have cancer. Cancer is a disease of the elderly. Kids don’t get cancer!
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:
Almost as soon as Erin’s illness was diagnosed, our self-recrimination began. What had we done to cause this illness? Was I careful enough during pregnancy? … I wondered about the toxic glue used in my advertising work or the silk screen ink used in my artwork. Bob questioned the fumes from some wood preservatives used in a project. We analyzed everything—food, fumes, and TV. Fortunately, most of the guilt feelings were relieved by knowledge and by meeting other parents whose children had been exposed to an entirely different environment.
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.
Sometimes I would feel incredible waves of absolute terror wash over me. The kind of fear that causes your breathing to become difficult and your heart to beat faster. While I would be consciously aware of what was happening, there was nothing I could do to stop it. It’s happened sometimes very late at night, when I’m lying in bed, staring off into the darkness. It’s so intense that for a brief moment, I try to comfort myself by thinking that it can’t be real, because it’s just too horrible. During those moments, these thoughts only offer a second or two of comfort. Then I become aware of just how wide my eyes are opened in the darkness.
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.
My husband had a difficult time after our son was diagnosed. We have a traditional marriage, and he was used to his role as provider and protector for the family. It was hard for him to deal with the fact that he couldn’t fix everything.
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.
It’s not a nice way to have to live. What’s waiting around the next corner? That’s a scary question. One of my biggest fears is the uncertainty of the future. All that we can do is the best we can and hope that it’s enough.
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 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.
Life isn’t fair, yet the sun still comes up each morning. To be angry because your child has a cancer is normal. The question is where to direct that anger. Sometimes I feel as if I’m angry at the entire world. In my heart, though, my outrage is directed solely at each and every tumor cell feeding on my child.
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.
• 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.
My husband went to the gym and lifted weights during and after treatment to get his anger and worry out. I saw a therapist for a period of time, and I got on medications. I didn’t want to go on meds, I didn’t want to need that, but it leveled me out.
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.
I have an overwhelming sadness and, unfortunately for me, that means feelings of helplessness. I wish I could muster up a fighting spirit, but I just can’t right now.
While I have moments of deep sadness and despair, I try not to let them turn into hours and certainly not days. I am too aware of the fact that I may have the rest of my life to grieve.
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.
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.
When we were given the diagnosis, it took time and layers of understanding before we could come to grips with everything. We realized that the adjustment wouldn’t be made in a single step, but that we’d reach plateaus of “new normal” along the way. In other words, don’t be surprised if you feel like you have a pretty good grip on things and then suddenly lose it one day. As with life as usual, some days will be better than others. If you feel deeply sad or completely overwhelmed one day, remind yourself that it’s a mood like all the others in your repertoire, and there is an excellent reason for it, but in time you will feel better able to cope.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. Bone Sarcomas
- 3. Liver Cancers
- 4. Neuroblastoma
- 5. Retinoblastoma
- 6. Soft Tissue Sarcomas
- 7. Kidney Tumors
- 8. Telling Your Child and Others
- 9. Choosing a Treatment
- 10. Coping with Procedures
- 11. Forming a Partnership with the Medical Team
- 12. Hospitalization
- 13. Venous Catheters
- 14. Surgery
- 15. Chemotherapy
- 16. Common Side Effects of Treatment
- 17. Radiation Therapy
- 18. Stem Cell Transplantation
- 19. Siblings
- 20. Family and Friends
- 21. Communication and Behavior
- 22. School
- 23. Sources of Support
- 24. Nutrition
- 25. Medical and Financial Record-keeping
- 26. End of Treatment and Beyond
- 27. Recurrence
- 28. Death and Bereavement
- Appendix A. Blood Tests and What They Mean
- Appendix B. Resource Organizations
- Appendix C. Books, Websites, and Support Groups