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.
Children’s and teens’ emotional responses to diagnosis are discussed in Chapter 17, 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. This allows parents to examine information in smaller, less-threatening pieces. Pediatric neurosurgeons and oncologists understand this phenomenon and are usually quite willing to repeat information as often as necessary. Many centers have nurse practitioners, physician assistants, and nurses who translate medical information into understandable language and answer questions. 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 tape recorder or smartphone, or ask a friend or family member to help keep track of all the new and complex information.
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 cannot acknowledge what is happening to their child. Psychologically, they are unable to accept it. 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 begin to make the necessary adjustments to treatment. Life has dramatically changed. When parents accept what has happened, understand their fears, and begin to hope, they will be better able to advocate for their child and their family.
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 after they completed medical school). He told me that Matthew had a tumor 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 a tumor. Tumors only grow in the elderly. Kids don’t get tumors!
Guilt is a common and normal reaction to a diagnosis of a brain or spinal cord tumor. 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? We knew radiation was a possible contributor; where had we taken Erin that she might have been exposed? 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 brain and spinal cord tumors or what can be done to prevent them.
Fear and helplessness are two faces of the same coin. Nearly everything about this new situation is unknown, and the only thing parents really 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 my boss fire me 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.
I stood at the elevator bank in the basement of Children’s Hospital waiting for the elevator, saying to all those around me: “I can’t even say those words out loud! Come on everybody say it with me: My daughter has a brain tumor! A brain tumor! A b-r-a-i-n t-u-m-o-r! Now that we know how to spell it, let’s say it over and over … braintumorbraintumorbraintumorbraintumorbraintumor!” Needless to say, I’m sure all the docs, nurses, and patients who were standing there with me just chalked it up to my temporary insanity, shock, denial, and complete flip-out that I was going through.
A child’s diagnosis instantaneously 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, IV teams, nurses, and social workers); a new language (medical terminology); and seemingly endless hospitalizations, procedures, and drugs. This transition is especially hard on parents 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.
Until adjustment begins, parents sometimes feel utterly helpless. Physicians they have never met are presenting treatment options for their child. Even if parents are comfortable in a hospital environment, feelings of helplessness may develop 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. The sense of helplessness often diminishes as parents gain a better understanding of the new environment and accept it as their new reality.
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.
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 happening 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.
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 further information, see Chapter 7, 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 brain and spinal cord 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, but yet the sun still comes up each morning. To be angry because your child has a brain tumor 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.
Anger at healthcare team:
- Try to improve communication with the doctors
- Discuss your feelings with one of the nurses or nurse practitioners
- Discuss your feelings with social workers
- Ask to meet with members of the various medical teams who are caring for your child to address or clarify communication issues
- 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 tape-record your feelings
- Cry in the shower or pound a pillow
- Listen to music
- Read other people’s stories about brain or spinal cord tumors
- Talk with friends
- Talk with parents of other ill children
- Join or start a support group
- Improve communication within the family
- 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
- Re-examine your faith
- Know that anger at God is normal
- 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 might die. 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 also grieve the loss of the child they knew. Children who achieve remission or cure from a brain or spinal cord tumor often have permanent late effects from treatment. The loss of the child as he once was can be very difficult for all members of the family.
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 begin to become more manageable 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 the strength to endure each trial. Hope is not a way around, it is a way through. There is reason for hope.
Thirty-five years ago, very few children with brain or spinal cord tumors were cured. Technological advances, including computer-assisted surgical planning, advanced imaging techniques, newer chemotherapy drugs, and focused radiation therapies, have changed that. Additional research continues to develop new treatments using gene therapy and individual tumor targeted therapies. Over the last 4 decades, because of these advances, as well as research and participation in clinical trials (see Chapter 5, Choosing a Treatment), many children are now long-term survivors.
Families often 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 consider each day with their child as a precious gift.
When we were given the diagnosis of glioblastoma multiforme (GBM), it took time and layers of understanding before we could come to grips with everything. This whole concept of brain disease is so frightening and so surreal; it can’t possibly be grasped in a few weeks. 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.
A Japanese proverb says: “Daylight will peep through a very small hole.”
Table of ContentsAll Guides
- 1. Diagnosis
- 2. The Brain and Spinal Cord
- 3. Types of Tumors
- 4. Telling Your Child and Others
- 5. Choosing a Treatment
- 6. Coping with Procedures
- 7. Forming a Partnership with the Treatment Team
- 8. Hospitalization
- 9. Venous Catheters
- 10. Surgery
- 11. Chemotherapy
- 12. Common Side Effects of Chemotherapy
- 13. Radiation Therapy
- 14. Peripheral Blood Stem Cell Transplantation
- 15. Siblings
- 16. Family and Friends
- 17. Communication and Behavior
- 18. School
- 19. Sources of Support
- 20. Nutrition
- 21. Medical and Financial Record-keeping
- 22. End of Treatment and Beyond
- 23. Recurrence
- 24. Death and Bereavement
- 25. Looking Forward
- Appendix A. Blood Tests and What They Mean
- Appendix C. Books and Websites