Parents suggest the following ways to keep the family more emotionally balanced.

• Make sure the family rules are clearly understood by all of the children. Stressed children feel safe in homes with regular, predictable routines.

After yet another rage by my daughter with cancer, we held a family meeting to clarify the rules and consequences for breaking them. We asked the kids (both preschoolers) to dictate a list of what they thought the rules were. The following was the result, and we posted copies of the list all over the house (which created much merriment among our friends):

1. No peeing on rug

2. No jumping on bed

3. No hitting or pinching

4. No name calling

5. No breaking things

6. No writing on walls

If they broke a rule, we would gently lead them to the list and remind them of the house rules. It really helped.

• Have all caretakers consistently enforce the family rules.

We kept the same household rules. I was determined that we needed to start with the expectation that Rachel was going to survive. I never wanted her to be treated like a “poor little sick kid,” because I was afraid she would become one. We had to be careful about babysitters, because we didn’t want anyone to feel sorry for her or treat her differently. I do feel that we avoided many long-term behavior problems by adopting this attitude early.

• Give all the kids some power by offering choices and letting them completely control some aspects of their lives, as appropriate.

For a few months we ignored Shawn’s two brothers as we struggled to get a handle on the situation. We just shuttled them around with no consideration for their feelings. When we realized how unfair we were being, we made a list of places to stay, and let them choose each time we had to go off to the hospital. We worked it out together, and things went much smoother.

• Take control of the incoming gifts. Too many gifts may cause the ill child to worry (“If I’m getting all of these great presents, things must be really bad”) and the siblings to feel jealous. Be specific if you prefer that people not bring or send gifts, or if you prefer gifts for each child, not just the sick one.

Paige has a sister, Chelsea, who was 5 at diagnosis, and a brother, Dan, who was 4 months old. Chelsea had a very difficult time. She didn’t like it that Paige was getting so many presents, and she often felt left out. When I would try to do something special for her, she would get mad—she just wanted normalcy.

• Recognize that some problems are caused solely by treatment. It helps to remember that children with cancer are not naturally defiant or destructive. They are feeling sick, powerless, and altered by surgery, radiation, and/or drugs, and parents need to try to help by sympathizing, yet setting limits. Remember, with time, their real personalities will return.

In the beginning, my 2-year-old daughter was incredibly angry. She would have massive temper tantrums, and I would just hold her until she changed from angry to sad. When she was on certain chemotherapy drugs, she would either be hugging me or pinching, biting, or sucking my neck. It drove me crazy. Now she’s not having as many fits, but she still pushes her sisters off swings or the trampoline. She has a general lack of control. Sometimes, when I can’t stand it anymore, I swat her on the bottom, and then I feel really bad.

• If your child likes to draw, paint, knit, collage, or do other artwork or crafts, encourage it. Art is both soothing and therapeutic, and it gives children a positive outlet for feelings and creativity. This is true for kids with cancer and their siblings.

Recently, when Cami was going through another “This-is-the-last-time-I’m-going-to-the-doctor” outburst, we spent the waiting time writing a list of all the horrible things we want to do to cancer (step on it; put needles in its eye; not let it have cake). I also draw cells—good and bad. We give lollipops to the good cells and scribble out the bad ones. It sounds simplistic, but it really helps.

• Allow your child to be totally in charge of her art. Listen carefully if your child offers an explanation about the art, but do not pry if he says it is private. Being supportive will allow your child to explore ways to soothe himself and clarify strong feelings.

Jody was continually making projects. We kept him supplied with a fishing box full of materials, and he glued and taped and constructed all sorts of sculptures. He did beautiful drawings full of color, and every person he drew always had hands shaped like hearts. If we asked him what he was making, he always answered, “I’ll show you when I’m done.”

• If your child does artwork or likes to write, recognize that powerful emotions may surface for both child and parents.

At my daughter’s preschool, once a week each child would tell the teacher a story, which the teacher wrote down for the child to take home. Most of my daughter’s prediagnosis stories were like this: “There was a rhinoceros. He lived in the jungle. Then he went in the pool. Then he decided to take a walk. And then he ate some strawberries. Then he visited his friend.” But during treatment, she would dictate frightening stories (and this from a kid who wasn’t allowed to watch TV and had never seen any violence). Two examples are: “Once there were some bees and they stung someone and this someone was allergic to them and then they got hurt by some monkeybars and the monkeybars had needles on them and the lightning came and hit the bees,” and, “Once upon a time there were six stars and they twinkled at night and then the sun started to come up. And then they had a serious problem. They shot their heads and they had blood dripping down.”

• Come up with acceptable ways for your child to physically release her anger. Some options are: ride a bike, run around the house, swing, play basketball or soccer, pound nails into wood, mold clay, punch pillows, yell, take a shower or bath, or draw angry pictures. In addition, teach your child to use words to express his anger, for example, “It makes me so angry when you do that,” or “I am so mad I feel like hitting you.” Releasing anger physically and expressing anger verbally in appropriate ways are both valuable life skills to master.

Our kids go along okay for a while, dealing with stuff. Then suddenly (because they’re tired, have reached a new point developmentally, or are not feeling well in a way they can’t describe), they lose it. It seems that every kid needs something different at these times, but what works best for Cami is for us to help her find words for her frustration. We talk about how unfair cancer is, how terrible treatment is, how no one else really knows what she’s going through. Sometimes she just bursts out crying with relief that someone understands!

• • • • •

Shawn was very, very angry many times. We had clear rules that it was okay to be angry, but he couldn’t hit people. We bought a punching bag, which he really pounded sometimes. Play-Doh® helped, too. We had a machine to make Play-Doh® shapes, which took a lot of effort. He would hit it, pound it, push it, roll it. Then he would press it through the machine and keep turning that handle. It seemed to really help him with his aggression.

• Get professional help whenever you are concerned or run out of ideas about how to handle emotional problems. Mental health professionals (see Chapter 21, Sources of Support) have spent years learning how to help resolve these kinds of problems, so let them help your family.

Every possible grouping of our family has been in therapy at one point or another. We have all done individual therapy, family therapy, and my husband and I did couples therapy. I feel that each of these sessions was a gift to our family. It helped us vent, cry, plan, and forge stronger bonds. We are all happy together many years after our daughter’s cure, and every single penny we spent was worth it.

• Most emotional problems resulting from cancer treatment can be resolved through professional counseling. However, some children and parents also need medications to get them through particularly rough times.

My daughter was doing really well throughout treatment until a combination of events occurred that was more than she could handle. Her grandmother died from cancer during the summer, one of her friends with cancer died on December 27, then another friend relapsed for the second time. She was fine during the day, but at night she constantly woke up stressed and upset. She had dreams about trapdoors, witches brewing potions to give to little children, and saw people coming into her room to take her away. She would wake up smelling smoke. She was awake three or four hours in the middle of the night, every night. Her doctor put her on sleeping pills and anti-anxiety medications, and the social worker came out to the house twice a month.

• Have reasonable expectations. If you are expecting a sick 4 year old to act like a healthy 4 year old, or a teenager to act like an adult, you are setting your child up to fail.

It seemed like we spent most of the years of treatment waiting to see a doctor who was running hours behind schedule. Since my child had trouble sitting still and was always hungry, I came well prepared. I always carried a large bag containing an assortment of things to eat and drink, toys to play with, coloring books and markers, books to read aloud, and Play-Doh®. He stayed occupied and we avoided many problems. I saw too many parents in the waiting room expecting their bored children to sit still and be quiet for long periods of time.

• As often as possible, try to end the day on a positive note. If your child is being disruptive, or if you are having negative feelings about your child, here is an exercise you can use to end the day in a pleasant way. At bedtime, parent and child each tell one another something they did that day that made them proud of themselves, something they like about themselves, something they like about each other, and something they are looking forward to the next day. Then a hug and a sincere “I love you” bring the day to a calm and loving close.

Our children look to us to learn how to handle adversity. They learn how to cope from us. Although it is extremely difficult to live through your child’s diagnosis and treatment, it must be done. So, we each need to reach deep into our hearts and minds to help our children have hope, endure, and grow.

I used a method with my son that I called, “Why are we here?” I used it for everything from IV pokes to taking meds. Anything we needed him to cooperate with got the “Why are we here” talk. He was 3 ½ when he was diagnosed and parenting him and guiding/coaching him through procedures is something I’m pretty proud of.

Before a blood test, for example, I would say, “Why are we here? We can’t see what is going on inside your body, but your blood tells us a story. It can tell us how you’re doing and how healthy your body is and how to help you feel better. But we need to take some blood out to be able to find all this out. How do you think we should get it?” This made my son feel empowered and he would offer suggestions and make some of the decisions. Once he has chosen to cooperate on his own terms, he could move on; we just need to give him the tools to do it. Many times, he still wouldn’t want to, but now he understands why we have to.

There can always be choices. Do you want to use freezing cream so it hurts less? Do you want the nurse to take it from your hand or arm? Which arm, right or left? Do you want mom or dad to help you? Hold you? Do you want a treat for cooperating? (The treat box didn’t work for long for us.) Do you want to watch?

Explain clearly what is expected of him. Acknowledge that it will hurt. Tell him that I’ll be right there with him so he doesn’t have to do it alone. Sometimes we would ask him how the nurse is supposed to do it to make sure she/he did things according to his preference. Kids watch everything so they know things like cleaning the arm takes 30 seconds of wiping, or you clean the port site with three cleaning sticks and let it dry before poking. Consistency with details like that can cut down on anxiety.