While loss of control extends over emotional issues, and ultimately over life itself, its emergence is most vivid in the child’s day-to-day experience of the illness, in the barrage of intrusive, uncomfortable, or painful procedures that he or she must endure. The child strives desperately to regain a measure of control, often expressed through resistant, noncompliant behavior or aggressive outbursts. Too often, the source of the anger—the loss of control—goes unrecognized by parents and caregivers. However, once its meaning is acknowledged, an explicit distinction may be drawn for the child between what he or she can or cannot dictate. In order to maximize the child’s sense of control, the environment can be structured to allow for as much choice as is feasible. Even options that appear small or inconsequential serve as an antidote to loss, and their impact is often reflected in dramatic improvements in behavior.

I always first acknowledged his feelings and whatever was the dominant feeling we went with. If he was angry, then I’d ask how he wanted to express the anger. “I want to punch something.” “Okay, you get your poke done and then let’s beat the hell out of these pillows or you can punch my hands.” Always give choices.

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 for Ewing’s sarcoma. 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.

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.

My 5-year-old’s behavior always intensified at clinic during treatment. He was hyperactive and defiant, to put it nicely. On his very last chemo day, he was hooked up to an infusion pump with a low battery, so his movement was limited to the bed. By the end of the session, he was so mad at being unable to move around, he was screaming at the top of his lungs, and throwing toys. First I tried to calm him, but then I got angry: I told him that he could just forget about the balloon we had in the car, it was gone. Of course, that just made it worse. We were both out of control, and they’ll remember us there for quite some time, I’m sure.

My daughter had frequent, violent rages that sometimes caused damage (toys thrown at the walls, books ripped up). She was small, but strong. I talked to her when she was calm about how the tantrums would be handled. Tantrums with no damage would be ignored; afterwards we would cuddle and talk about what prompted the anger and other ways for her to handle the anger. If she began to break things or hurt people, I would wrap her in a blanket and rock her until she relaxed. I would tell her, “I need to hold you because you are hurting people. This is so hard. I know. I love you.” All of the tantrums ended after she went off treatment, but dealing with her destructive anger was one of the hardest things I have ever experienced.

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.”

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.

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.

My daughter was a hair twirler. Whenever she was nervous, she would twirl a bit of her hair around her finger. As her hair fell out, she kept grabbing at her head to find a wisp to curl. I told her that she could twirl mine until hers grew back. She spent a lot of time next to me or in my lap with her hand in my hair. It was annoying for me sometimes, but it had a great calming effect on her. When hers grew back, I would gently remind her that she had her own hair to twirl. She also went back to a bottle, although we did limit the bottle use to home or hospital. Both behaviors, hair twirling and drinking from a bottle, disappeared within 6 months of the end of treatment, when she was 6 years old.

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.

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.”

Courtney’s diagnosis was very difficult for her two older brothers. Especially Jay, who at the age of 10 understood the concept of death far better than Vaughn did at age 6. Both boys had to deal with our sudden departure late at night, taking with us their baby brother, Jared (age 9 weeks) and Courtney, who was 18 months old at the time. One of the hardest things I’ve ever done in my entire life was to answer a question Jay asked me one night. He asked me if his sister was going to die. I ached to lie to him and tell him that everything would be all right. I wanted to say, “Of course she isn’t,” but I couldn’t do it. I had always been honest with the children, and felt that, difficult as it was, now more than ever he needed to know that he could trust that what I was saying was true. I told him his sister might die, but that we were going to do everything we could to make sure that didn’t happen.

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 2 hours before Preston came back. He said, “That’s what I needed; I feel much better now.”

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.

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.”