Childhood Cancer

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Childhood Brain and Spinal Cord Tumors

Communication

Chapter 1, Diagnosis, lists many of the feelings parents may experience after their child’s diagnosis of a brain or spinal cord tumor. It is helpful to remember that children, both the ill child and siblings, are also overwhelmed by strong feelings, and they generally have fewer coping skills than do adults. At different times and to varying degrees, children and teens may feel fearful, angry, resentful, powerless, violated, lonely, weird, inferior, incompetent, or betrayed. Children have to learn strategies to deal with these strong feelings to prevent “acting out” behaviors (aggression, risk taking) or “acting in” behaviors (depression, withdrawal).

Good communication is the first step toward helping your family identify how behavior and family functioning are being impacted and how family members can work with each other, and with professionals, to restore order and a nurturing climate. Clear and loving communication with your children or teens is the foundation for trust. Children need to know from the very beginning that you will answer questions truthfully and take the time to talk about feelings.

Honesty

Above all else, children need to be able to trust their parents. They can face almost anything, as long as they know their parents will be at their side. Trust requires honesty. For your ill child and her siblings to feel secure, they must always know that they can depend on you to tell them the truth, be it good news or bad. This trust you build with your children reduces feelings of isolation and disconnection within the family.

Listening

We were always very honest. We felt that if she couldn’t trust us to tell her the truth, how scary that would be. I’ve seen a few incidents in the clinic of people with totally different styles who don’t tell their kids the truth. I ran into the bathroom at the clinic crying after overhearing a mother who had deceived her child into coming to the clinic. Then he found out he needed a back poke and completely lost it. It makes me cringe. Children just have to be prepared. If they can’t trust their parents, who can they trust?

Just trying to get through each day consumes most of a parent’s time, attention, and energy. Consequently, one of the greatest gifts parents can give their children is time— when they really focus on what children are saying and pay attention to the feelings that generate the words.

Talking

When my daughter was 7 years old (3 years after her treatment ended), I realized how important it was to keep listening. She was complaining about a hangnail and I told her that I would cut it for her. She started to yell that I would hurt her. I asked her, “When have I ever hurt you?” and she said, “In the hospital.” I sat down with her in my arms, rocked her, and explained what had happened in the hospital during her treatment, why we had to bring her, and how we felt about it. I told her how I felt when she was hurt by procedures. I asked her to tell me about her memories and feelings about being in the hospital. We cleared the air that day, and I expect we will need to talk about it many more times in the future. Then she held out her hand so I could cut off her hangnail.

If you are not in the habit of sharing your feelings with your children, it is hard to start doing so in a crisis. But now, more than ever, it’s important to try. Parents can create an opening for discussion by simply stating how they are feeling, for example, “I have lots of different feelings at the same time. Sometimes I really get mad at the tumor because it is making your life so tough, but I am also happy that the medicine is working.” Telling your healthy children what you’re feeling can strengthen your connection and reassure them of your love: “I really miss you when I have to take your sister to the hospital. I’ll call you every night just so I can hear your voice,” or “I wish the family didn’t have to be separated so much, and I feel sad that you have to go through this.” Such statements reassure children of your continued love for them and distress about being separated from them; they also create an opportunity for children to share with you how they feel about what is happening to the family.

My daughter, diagnosed at 1 year old and now entering fifth grade, has three older siblings, so we have been through many developmental stages as far as communication goes. I try to answer their questions honestly, but I only tell them what I think they can understand without overwhelming them with information. I remember one of my boys, soon after my daughter’s diagnosis, asked me if she was going to die, and I said “no” emphatically. I regretted it immediately, and realized that I would have to deal with my fears about the possibility of her dying, then go back and tell him the truth. So, later, I told him that I hadn’t given an accurate answer because I was scared and that we didn’t know if she was going to die. We hoped not, but we would have to wait and see. I have found that as their understanding deepens, they come back with more questions, needing more detailed answers. So, my motto is, be honest, but don’t scare them. If you say everything is okay, but you are crying, they know something is wrong, and that they can’t trust you for the truth.

It is also helpful to tell your sick child how the illness is affecting her siblings, for example, “It is very hard for Jim to stay at home with a babysitter when I bring you to the hospital. Let’s try to think of something nice to do for him.”

Chapter 17: Communication and BehaviorCommon behavioral changes in children

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