Chapter 1, Diagnosis, lists many of the feelings parents may have after their child’s diagnosis of leukemia. It is helpful to remember that children, both the ill child and siblings, are also overwhelmed by strong feelings, and most often have fewer coping skills than 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 ways 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 cancer is affecting behavior and family functioning, and how family members can work with each other, and with professionals, to maintain 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

Children can face almost anything if they know their parents will be at their side. For your ill child and other children 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.

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?

Listening

Just trying to get through each day consumes most of a parent’s time, attention, and energy. Thus, one of the greatest gifts parents can give their children is time—time when they are fully present in the moment and really focus on what their children are saying and the feelings that generate the words. This can be difficult when you are physically and emotionally exhausted. But children notice when you aren’t really paying attention and are distracted by other thoughts and worries.

After my relapse at age 13, the chemotherapy was much more difficult to tolerate. My appearance changed dramatically due to hair loss and rapid weight gain from prednisone. The L-asparaginase made my legs stiff and sore, so that it was difficult to walk. After a 2-month absence, when I returned to school, the treatment I received from the other students was unbearable. I finally refused to go to school. I felt so strongly about not going to school that once, on the way there, I jumped out of the car at an intersection. This helped mom and dad listen to me and make the decision to send me to a private school. The kids and staff at the new school knew my situation and were very compassionate. The decision to change schools was one of the best things my parents ever did for me.

Talking

If you are not in the habit of sharing your feelings with your children, it is hard to start doing so during a crisis. But now, more than ever, it is 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 cancer because it is making your life so tough, but I am also happy that the medicine is working.”

Telling your healthy children what you are 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 a chance 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.