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 think that much anger can be avoided by giving choices and letting kids have some control. Parents need to clearly explain that there are some things that simply have to be done (spinal taps) but that the child or teen is in control of positions, people present, music, even timing. For example, if your teen gets bad headaches after spinals, help him negotiate the date and time when the spinal will be done so that sports or social life will not be impacted.

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.

If you talk to Ezra (age 13), he’d tell you he’s angry that everything is so hard now. Because of the medulloblastoma and because of treatment, his life is hard every day. Even eating and drinking are work for him.

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 out of control. 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.”

The day for our family band gig started out badly. Ez (age 13) was downhearted, green, looked very small, felt nauseated, and hadn’t eaten much breakfast. He just sorta sat and stared for an hour as Hannah and I bustled around practicing, writing up the set list and deciding on introductions, and putting gear in the car. I kept asking him did he want to play trumpet a bit with us and he said no. We got to the site, it was a glorious day, the band before us was wonderful, everybody was smiling, but Ez sat hunched on a bench. I was in despair. I also was, practically, fearing he might throw up on stage. So we got up there and this is what happened: he played badly, but he was a good presence. He introduced some of the songs and was so funny the audience howled. He was relaxed and smiling even as at one point he dropped the bomb, saying through the microphone: “I just want you to know I used to play trumpet better than this before I had cancer.” He rallied for the last couple songs, and nailed the ending of the last piece wonderfully. The most amazing thing, though, was that he was instantly in a wonderful smiley proud mood as we got off stage and had a huge appetite after.

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. After EMLA® (local anesthetic) became available, and she was less terrified of being hurt, 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.

When Ayla (32 months) finally came home from the hospital after treatment for medulloblastoma, I decided to sleep with her. We were crammed into a small bed but I got to spend more time with her (you never know what the future may hold) and she knew that if she needed love all she had to do was open her eyes and see me there. Love has healing qualities. I think that the physical closeness somehow transfers the love. As we sleep and our bodies let down their defenses, the love can flow back and forth much easier. So despite what our American culture believes, I think that if your child wants you to sleep right beside her, you should.

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.”

My son is a teenager and has to face some difficult issues with death. Just as my son finished treatment for medulloblastoma, another boy a year ahead of my son in our school was diagnosed with a glioblastoma multiforme brain tumor and died within 9 months. It was very hard for my son and one of his teachers even said to him after the death, “I guess this puts things into perspective for you.” Like he needed to be reminded. Also, three of his roommates from cancer camp have died in the past year and they were all brain tumor kids. It is like they are being put face-to-face with their own mortality. These kids are extremely intuitive, they know the score. All you can do is be there for them, to listen, to support them, to hold and love them.

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.”

I’ll be finishing my last round of radiation today. I have an oligodendroglioma tumor on my right temporal lobe. I’ve been having some crazy feeling aura seizures. I do feel like I’m losing it at times. I definitely feel it’s okay to worry. Believe me, I have my times for sure! I like to get together with as many friends as I can and go to the beach and check out the waves and smell the air. Definitely have to be listening to music. Talk to as many people as I can surround myself with and of course be alone to hit up the computer and sleep. The telephone seems to be a good friend too. I feel that I have too many lives to touch before I’m all said and done.

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.”