Fatigue and weakness

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Fatigue, a feeling of weariness, is an almost universal side effect of treatment for cancer. General weakness, while different from fatigue, is caused by many of the same things, and is treated the same way. Fatigue and weakness may be constant throughout therapy or intermittent. They can be minor annoyances or totally debilitating.

Many parents worry that if fatigue is present, so is the cancer, but this is not the case.

Fatigue and weakness can be caused by one, or a combination, of the following things:

Your childs body working overtime to heal tissues damaged by treatment and to rid itself of dead and dying cancer cells

• Medications to treat nausea or pain

• Mineral imbalances caused by chemotherapy, diarrhea, or vomiting

• Emotional factors such as anxiety, fear, sadness, depression, or frustration

• Malnutrition caused by nausea, vomiting, loss of appetite, or taste aversions

• Cranial radiation

• Disruption of normal sleep patterns (common when hospitalized or when taking some drugs such as prednisone)

My son is almost 19 and is just beginning his third year of maintenance for ALL. He is a quiet and studious young man, has never dated, and does not go about partying and the like. The last three months, he appears to be all right, but he is, in his own words, always "exhausted." In college and living in the dorm, he can get up in the morning at six, but if he has two classes in a row, he is quite likely to fall asleep during the second class. He's too tired to concentrate on homework for more than an hour at a time. Before diagnosis, a 50-mile bike ride was nothing to him. Even six months ago, he could ride

30 miles, although he did feel some fatigue. Now, his beloved bike rests gathering dust. It breaks my heart that my son cannot feel the exuberance of young adulthood that I experienced at his age, but I am so very thankful that the treatment for leukemia has saved his life. I hope that when he is off treatment he will finally feel good again.

The following are suggestions from parents:

• Make sure that your child gets plenty of rest. Naps or quiet times spaced throughout the day help.

Erica took a two-and-a-half-hour nap every afternoon throughout therapy. She's 4 now and off treatment, but her endurance is low and she still tires easily.

• Limit visitors if your child is weak or fatigued.

While in the hospital, my daughter was very weak. She had too many visitors, yet didn't want to hurt anyone's feelings. We worked out a signal that solved the problem. When she was too tired to continue a visit, she would place a damp washcloth on her forehead. I would then politely end the visit.

• Serve your child well-balanced meals and snacks, but don't get upset if he doesn't eat them (see next point).

• Parents and children should try to avoid physical or emotional stress.

• Encourage your child to pursue hobbies or interests if able. For example, if your child is too weak to play on his athletic team, let him go to cheer the team on.

My eighth-grade daughter was a fabulous athlete prior to her cancer diagnosis. When she went back to school after missing a year, she wasn't very competitive, but she managed the softball team and dressed for basketball. So she was still part of the social scene and was able to do things with the teams.

• Help your child make a prioritized list of activities. If he feels strongly that he wants to attend a certain function, and you think he may run out of energy, throw a wheelchair or stroller into the car and go.

• Encourage your child to attend a kid or teen support group, and go to the parent group yourself. Seeing that others have the same problems and talking about how you are feeling can lighten the load.

Many children go through through the low- or average-risk protocols for leukemia without fatigue or weakness, while other children are not so lucky. The following are two typical stories.

Before Brent was diagnosed at age 6, he was exceptionally well coordinated and a very fast runner. During treatment, he slowed down to about average. He played soccer and T-ball throughout, and was very competitive.

Jeremy has had some major, persistent problems with weakness and loss of coordination. When he was 9 years old, a year off therapy, he still could not catch a ball. When he ran, he was like a robot, and the trunk of his body stayed straight. Some kids made fun of him, and he got very frustrated with himself. He had lots of physical therapy, and now, three years off chemotherapy, his skills have improved, but he still has to work harder than the other kids. We put him into martial arts in hopes of further increasing his motor skills and his confidence.

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