Parents suggest the following ways to keep the family on a more even keel.
• Make sure that the family rules are clearly understood by all of the children. Stressed children feel safe in homes that are very structured with regular, predictable routines.
After yet another rage by my daughter with leukemia, 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 baby-sitters 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.
My bald, angry, 4-year-old daughter asked me for some scissors one day. I asked what she was going to do, and she said cut off all her Barbies' hair. I told her those were her dolls and she could cut off their hair if she chose. I asked her to consider leaving one or two with hair, because when she had long hair again, she might want dolls that looked like her then, too. But I said it was up to her She cut most completely off, and left some intact. It really seemed to make her feel better.
Take control of the incoming gifts. Too many gifts make the ill child worry excessively ("If I'm getting all of these great presents, things must be really bad") and makes the siblings jealous. Be specific if you want people not to bring gifts, or if you want gifts for each child, not just the sick one.
Recognize that some problems are caused solely by the drugs. (See the prednisone section of Chapter 10, Chemotherapy.) It helps to remember that these children are not naturally defiant or destructive. They are feeling sick, powerless, and altered by massive doses of toxic drugs, and parents need to try to help by sympathizing, yet setting limits. Remember, when they get off the drugs, 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 and tell her that I wouldn't let her hurt anybody. I would continue to hold her until she changed from angry to sad. When she was on the dexamethasone, she would either be hugging me or pinching, biting, or sucking my neck. It drove me crazy. Now, on maintenance, 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.
• Even though some oncologists tell parents that during the maintenance phase of treatment life will return to normal, it usually does not. It is better than the intensive parts of treatment, but often, emotional and behavioral difficulties arise when the child regains his strength during maintenance. Be glad if your childs difficulties subside during maintenance, but don't expect them to.
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!
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.
• If your child likes to draw, paint, knit, do collages, or other artwork, encourage this. Art is both soothing and therapeutic, and it allows the child a positive outlet for feelings and creativity. Making something beautiful really helps raise children's spirits.
When Jody was in the laminar airflow (isolation) room for weeks after his bone marrow transplant, he passed the time by doing many collages. I kept him well supplied with all sorts of materials, and he created beautiful things.
• If your child does artwork or writing, 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 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 the week before or after a painful procedure, she would dictate frightening stories (and this from a kid who wasn't allowed to watch TV). 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."
• Allow your child to be totally in charge of his art. Do not make suggestions or criticize (e.g., "stay inside the lines" or "skies need to be blue not orange"). Rather, encourage them and praise their efforts. Display the artwork in your home. Listen carefully if your child offers an explanation of the art, but do not pry if it is private. Above all, do not interpret it yourself or disagree with your child on what the art represents. 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."
• Come up with acceptable ways for your child to release anger physically. 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 furious when you do that" or "I am so mad I feel like hitting you." Releasing anger physically and expressing anger verbally are both valuable life skills to master.
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.
• Treat the ill child as normally as possible.
When Justin was in the hospital, I could never stand to see him in those little hospital gowns. I asked if we could dress him in his own outfits, and they said yes. So even when he was in the ICU with all the tubes coming out of his body, we dressed him every day in something cute. It just felt better to see him in his clothes. Several months later my mother said that she had really admired us for doing that because we were sending the message to Justin that everything was going to be okay. That even though he couldn't breathe on his own, he was still going to get up every day and get dressed. Now I think it probably did communicate to him that things were going to be normal again.
• Get professional help whenever you are concerned or run out of ideas on how to handle emotional problems. Mental health care professionals (see Chapter 9, Sources of Support) have spent years learning how to help resolve these kinds of problems, so let them help you.
My daughter and I both went to a wonderful therapist throughout most of her treatment for ALL. My daughter was a very sensitive, easily overwhelmed child, who withdrew more and more into a world of fantasy as cancer treatment progressed. The therapist was skilled at drawing out her feelings through art work and play. She also helped me with very specific suggestions on parenting. For instance, when I told the therapist that my daughter thought that treatment would never end (a reasonable assumption for a preschooler), she suggested that I put two jars on my daughter's desk. One was labeled "ALL DONE," and the other was labeled "TO DO." We put a rock for every procedure and treatment already completed in the ALL DONE jar, and one rock for every one yet to do in the TO DO jar. (Only recommended if the child is more than halfway through treatment.) Then, each time we came home, my daughter would move a rock into the ALL DONE jar It gave her a concrete way to visualize the approach of the end of treatment. She could see the dwindling number of pebbles left. On the last day of treatment, when she moved the last pebble over and the TO DO jar was empty, I cried, but she danced.
• Most emotional problems that children develop as a result of treatment for cancer can be resolved by professional counseling. However, some children may 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 antianxiety medications, and the social worker came out to the house twice a month.
• Teach children relaxation or visualization skills to help them cope better with strong feelings. (See Appendix D, Books and Online Sites, for books on such skills.)
• Have reasonable expectations. If you are expecting a sick 4-year-old to act like a healthy 6-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 your feelings toward your child are very negative, here is an exercise that can 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, 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.
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