Parenting is challenging, even when family life is going well. But when a child has cancer, parents are stressed, siblings may be angry or worried, and the ill child is scared and upset. Parents may find themselves reaching their emotional breaking points, and children may begin behaving in negative ways, making the situation very difficult.

The first step to improving family life is to decide whether the ill child is going to be treated as if she only has a few months to live, or as if she will survive and needs to learn strategies for how to manage difficult emotions. Step two is to examine your own behavior to see whether you are modeling the conduct you expect from your children.

If your child becomes angry or destructive, step three is to develop a consistent, healthy response to the behaviors to help him learn ways to deal with his strong emotions. In the following sections, parents share how they handled their children’s range of emotions and behaviors.

Anger

Parents sometimes respond to the diagnosis of childhood cancer with anger, and so do children. Not only is the child angry at the disease, but also at the parents for bringing her in to be hurt, at having to take medicine that makes her feel terrible, at losing her hair, at losing her friends, and on and on. Children with cancer and their siblings have good reasons to be angry. The parents’ task is to help the child learn to channel the anger appropriately.

We have a case of the halo or the horns. Our son is either very defiant or an absolute angel. He argues about every single thing. I really think that it is because he has had so little control in his life. I have very clear rules, am very firm, and put my foot down. But I also try to choose my battles wisely so we can have good times, too. My husband reminds me when I get aggravated that if he weren’t this type of tough kid, he wouldn’t have made it through so many setbacks. Then I am just glad to still have him with us.

• • • • •

I was initially excited when my son finished treatment. I really expected to have a normal life again. In reality, the whole family had a hard time adjusting. He has a twin brother, and both boys had a very rough transition to junior high school. They were frequently in trouble and began failing most of their subjects. It added a lot of stress to our home life to have the principal calling us two to five times a week. Although we started counseling, we still had major blow-ups at home.

Tantrums

Healthy children have tantrums when they are overwhelmed by strong feelings, and so do children with cancer. In some cases, tantrums can be predicted by parents paying close attention to what triggers the outburst (for example, a missed nap or anxiety about an upcoming procedure). This knowledge can help parents prevent tantrums by avoiding situations that create emotional overload for their child; but sometimes there is no warning of the impending tantrum. It also helps to know that many tantrums and behavioral changes are due to medication side effects and are out of the child’s control.

We never knew what would set off 3-year-old Rachel, and to tell the truth, she didn’t know what the problem was herself. She was very verbal and aware in many ways, but she had no idea what was bothering her and causing the anger. I would just hold her with her blanket, hug her, and rock until she calmed down. Later she would say, “I was out of control,” but she still didn’t know why.

Of course, if your child is destructive, she needs help learning safer ways to vent her anger. A chapter in Larry Silver’s book The Misunderstood Child (see Appendix C, Books, Websites, and Support Groups) explains in detail how parents can initiate a behavior modification program at home. For a child who is frequently destructive, professional counseling is needed.

When my son needed to get out a good old temper tantrum just to unload, I’d let him. Then he’d fall into my reassuring arms and soak up some good ole momma lovin’ and just whimper till he slept…my hand stroking his hair, and I’m whispering things like, “I know, honey, I know. It’s just so wrong. I’m here, baby. I love you. I know. I know. Just sleep for now. I’ll be here when you wake. I’m not moving. I’m not going anywhere. I love you. There now.”

Withdrawal

Some children deal with their feelings by withdrawing rather than blowing up in anger. Like denial, withdrawal can temporarily be helpful as a way to come to grips with strong feelings. However, too much withdrawal is not good for children, and it can be a sign of depression. Parents or counselors need to find gentle ways to allow withdrawn children to express how they feel.

My daughter became very depressed and withdrawn as treatment continued. She started to talk only about a fantasy world that she created in her imagination. She seemed to be less and less in the real world. She didn’t ever talk to her therapist about her feelings, but they did lots of art work together. At the beginning, she only drew pictures of herself with her body filling the whole page. With time, she began to draw her body more normal sized. As she got better, she began to draw the family again. When she drew a beautiful sun shining on the family, I cried. She just couldn’t talk about it, but she worked so much out through her art.

The emotional impact of cancer is very strong during the teenage years, a time when appearance is particularly important. When adolescents look different from their peers, they may feel sad, angry, embarrassed, bewildered, helpless, and scared. Teens may go through a period of withdrawal and/or grieving; it is crucial that they receive support and counseling during these times.

I had cancer when I was 15. I tried so hard as a freshman in college to put it all behind me and get on with my life. It just didn’t work. Next to treatment, that was the worst year of my life. It showed me that if I didn’t deal with it consciously, I was going to deal with it subconsciously. I had nightmares every night. I’d wake up feeling that I had needles in my arms. I decided to start taking better care of myself in a different kind of way. I do something fun every day. I try to see the positive side of situations. I read more and write a lot. I unplug from the cancer community whenever I feel overwhelmed. I try to explore my feelings with my counselor rather than shove them in the back corner. It’s like garbage; if you don’t take it out, it starts to stink. Once I started dealing with these feelings, things really improved.

Comfort objects

Some parents worry when, after diagnosis, children regress to using a special comfort object. Many young children ask to return to using a bottle, or cling to a favorite toy or blanket. It is reasonable to allow your child to use whatever he can to find comfort against the difficult realities of treatment. The behaviors usually stop either when the child starts feeling better or when treatment ends.

Matthew had a special teddy bear that a friend had bought for him in Germany. Mr. Bear, as he was called, went through everything Matthew went through. When he received cranial radiation, Mr. Bear had his skull irradiated, too. If Matthew needed oxygen, they both got a mask. That little teddy bear even had surgery a few times. Each time my son was admitted to the hospital, Mr. Bear went along and got his own hospital identification bracelet. They went through a lot together. It’s amazing how much comfort he received from a stuffed toy.

Talking about death

Part of effective parenting is allowing children to talk about topics that may cause feelings of discomfort in parents and children. No parent wants to talk, or even think, about the possibility of a child’s death. In some cultures, the subject of death is taboo. But a diagnosis of cancer forces both parents and children to acknowledge that death is a very real possibility. Even children as young as age 3 may think about death and what it means. They need to be able to talk about their feelings, fears, or questions without their parents shutting down the conversation.

Eighteen months into treatment, 5-year-old Katy said, “Mommy, sometimes I think about my spirit leaving my body. I think my spirit is here (gesturing to the back of her head) and my body is here (pointing to her belly button). I just wanted you to know that I think about it sometimes.”

Trusting your child

Sometimes children will tell you what they need to do to persevere through this trial. Their coping choices may not be what the parents would choose—the decisions may even make the parents nervous. But it is the child or teen’s way to make peace with the day-to-day reality of diagnosis and treatment.

More than half of my son’s life has been hijacked by cancer (8 years) and he has had so little control. So, when he could be in control he was. He often chose not to communicate or make eye contact. Or he’d say, “I will do that but not right now.” In the beginning, I was embarrassed and talked to him about cooperation. Then I decided it was my hang-up and his right. His life has really sucked for a long, long time. So, I let him decide how he wanted to communicate and participate, and I’m glad that I did.

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Early one summer morning, 12-year-old Preston and I left the hospital after a week-long stay for chemotherapy. He had been heavily sedated and was groggy and shaky on his feet. My husband and daughter were getting ready to go on a boat trip, and I felt Preston was too sick to go. We sadly saw them off, then returned to the car. Preston said, “Mom, I really need to go fishing. I know you don’t understand, but I really need to do this.”

It made me very uncomfortable, but we went home to get his equipment. We then drove up to the mountains to a very deserted spot on the river, and Preston said that he needed to be out of my sight. So I watched him put on his waders, walk into the swift river, and disappear around a bend upstream. I went out into the river and sat on a rock. I waited for two hours before Preston came back. He said, “That’s what I needed; I feel much better now.”

There is a fine line between providing adequate protection for our children or teens and becoming overly controlling because of worry about the disease. You might ask yourself, “If she didn’t have cancer, would I let her do this?”

Coping

Some children, because of both temperament and the environments in which they have lived, are blessed with good coping abilities. They understand what is required, and they do it. Many parents express great admiration for their child’s strength and grace in the face of adversity. However, most children and parents have a hard time coping during parts of treatment, or throughout treatment. Help is available (e.g., private therapy, hospital social worker, or psychologist) if this is your situation.

My daughter, Lilly, did not have many coping skills due to preexisting mental issues and PTSD, and this was one of the biggest challenges during hospital visits. We were helped by a home therapist who came twice a week to the house and spent time teaching Lilly how to recognize emotions and healthy ways of dealing with them, as well as healthy ways to express anger, sadness, hurt, etc., rather than hurting herself or me.

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Stephan has not had any behavior problems while being treated for his initial diagnosis (age 5) or his relapse (age 7). He has never complained about going to the hospital and views the medical staff as his friends. He has never argued or fought about painful treatments. Unlike many of the parents in the support group, we’ve never had to deal with any emotional issues. We are fortunate that he has that confident personality. He just says, “We’ve got to do it, so let’s just get it done.”