The shock of diagnosis results in an overwhelming number of intense emotions. Cultural background, individual coping styles, basic temperament, and family dynamics all affect a parent’s emotional response to stress. There are no stages of response, and parents frequently find themselves swinging from one emotional extreme to another. Many of these emotions reappear at different times during treatment. All of the emotions described below are normal responses when your child is diagnosed. The emotional responses of children and teens are discussed in Chapter 19, Communication and Behavior.

For weeks after diagnosis, I had trouble sleeping. When I did sleep, I’d wake up abruptly thinking “Lauren might die.” Then my next thought was that it was a bad dream. But, it wasn’t. It took weeks for that first waking thought to disappear.

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 from parents and children.

Don’t be embarrassed to say you do not understand or that you forgot something you were told. It happens to all parents of kids with cancer. 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.

The doctor ordered a CBC from the lab. All the while I’m still convinced my son’s bleeding gums were caused by his 6-year molars. The rest happened so fast it’s hard to recount. We ended up at the hospital getting a bone marrow test. My husband and I tried to tell the doctor that we would go home and let Stephen rest and that when we came back in the morning they could do another CBC. We were positive that his cell counts would go up in the morning. He said that we didn’t have until morning. He said Stephen was very, very sick. After the bone marrow test, the doctor called us in a room and said that Stephen had leukemia. After that word I couldn’t hear a thing. My ears were ringing, and my body was numb. There were tears in my eyes. It was actually a physical reaction. I asked him to stop explaining because I couldn’t hear him. I went back to the hospital room to cry.

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For the longest time (in fact still, three years later) I can hear the doctor’s voice on the phone telling me that Brent had leukemia. I remember every tiny detail of that whole day, until we got to the hospital, and then the days blur.

• • • • •

I felt like I was standing on a rug that was suddenly yanked out from under me. I found myself sitting there on the floor, and I just didn’t know how to get up.

Denial

Denial is when parents simply cannot believe 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.

After our daughter’s diagnosis, we had to drive two hours to the hospital. My husband and I talked about leukemia the entire trip and, I felt, started to come to grips with the illness. However, after the IV, the x-rays, and the blood transfusions, he became extremely upset that they were going to admit her. He thought that we could just go home and it would be finished. I had to say, “This will be our life for years.”

• • • • •

My husband and I sat and waited in silence until the doctor came back with the test results. The next thing I knew we were in his office with a primary nurse, a social worker, and a resident listening to the sickening news that our son had leukemia. I couldn’t stop crying, and just wanted to grab my 2-year-old son and run far, far away.

Guilt

Guilt is a common and normal reaction to a diagnosis of childhood leukemia. Parents sometimes feel that they have failed to protect their child, and they may blame themselves. It is especially difficult because the cause of their child’s cancer 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 blood work? Why didn’t we live in a safer place? 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 leukemic 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 leukemia or how to prevent it.

Fear and helplessness

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 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 hard to explain how tired and terrified and empty you feel in the weeks after diagnosis. My husband and I went to Target to get our daughter some favorite foods because she had stopped eating. I needed some reading glasses and saw a display. The sign said to put your toes on the line while trying on the glasses. I was such a mess I thought it said to bend over and touch your toes. I couldn’t figure out why I needed to touch my toes. Of course, I had already bent down and touched my toes. Then, we read the instructions again and burst out laughing and couldn’t stop. We were laughing like hyenas! It was the first time we’d laughed since diagnosis.

Many parents explain that helplessness begins to disappear when a sense of reality returns. They begin to learn about the disease, study their options, make decisions, meet other parents of children with cancer, and grow 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 10, Forming a Partnership with the Medical Team). However, don’t 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 cancer. Because parents cannot direct their anger at the cancer, they may target doctors, nurses, spouses, siblings, or even their ill child. Anger directed at other people can be very destructive, so it is necessary to devise ways to express and manage the anger.

We were sent to the emergency room after my son’s diagnosis with leukemia. After the inevitable delays, an IV was started and chest x-rays taken. I struggled to remain calm to help my son, but inside I was screaming NO NO NO. A resident patted me on the shoulder and said, “We’ll check him out to make sure that everything is okay.” I started to sob. She looked surprised and asked what was the matter. I yelled, “He’s not okay, and he won’t be okay for a long time. He has cancer.” I realized later that she was trying to comfort me, but I was both angry and terrified. Surprisingly, by the end of my son’s hospitalization, we trusted and felt very close to that resident.

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

Anger at healthcare team:

• Discuss your feelings with one of the nurses or nurse practitioners
• Share your feelings with the social worker, chaplain, or psychologist
• 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 of your feelings
• Cry in the shower or pound a pillow
• Listen to music
• Talk with friends
• Join or start a support group
• 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 members of your church, synagogue, or mosque
• 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.

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Here’s a bit of advice: The best place to cry is in a hot shower. I would go in and cry, cry, cry, cry then come out all refreshed, clean, and warm. That really helped me.

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 that they may 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.

Even though my daughter’s prognosis was good, I would find myself daydreaming about her funeral. Certain songs especially triggered this feeling. I invariably burst into tears because I was ashamed to be thinking/planning a funeral when I just could not imagine my life without her. When these feelings washed over me, I could actually feel a physical sensation of my heart ripping.

• • • • •

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.

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.

Hope

After being overwhelmed by illness, fear, sadness, grief, guilt, and anger, most parents welcome the growth of hope. Hope is the belief in a better tomorrow. Hope sustains the will to live and gives one the strength to endure difficult times. Hope is not a way around; it is a way through. Most children survive childhood leukemia 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 consider each day with their child as a precious gift.

Some people don’t get it when I say that there were many good things about our journey through leukemia. I wouldn’t wish it on anyone, but my daughter and I both learned that we have strengths we did not suspect; we found love and support and compassion in places we never expected it; we were honored to know people who dedicate their lives to helping children survive this disease; I found joy in the tiniest of pleasures; and I discovered that the world is unbelievably beautiful when we look at it through grateful eyes.

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