HELP FOR YOU

Pain relief, nutrition, treatment for infections, immunizations, bleeding, transfusions, and dental/mouth care are all part of supportive care. The goal of supportive care is to prevent or lessen the side effects of the treatment and the disease. With this care, your child can receive the needed therapy with greater safety and comfort. You may want to talk with your child's doctor or other members of the treatment team to see how the information provided below might help your child.

Your child may have pain for a variety of reasons. Pain may be caused by the cancer itself, or it could be from the treatment, such as surgery to remove a tumor or side effects of chemotherapy. Sometimes, cancer patients have pain that has nothing to do with the cancer, such as a toothache or a headache.

The best way to relieve pain is to treat its cause. If a tumor is causing pain, the doctor may try to remove the tumor or decrease its size using surgery, radiation therapy, and/or chemotherapy. Other ways to relieve or control pain include use of:

Preventing pain from starting or getting worse is the best way to control it. Some people call this "staying on top of the pain." It may also mean that your child will need a lower dose of a pain reliever than if you wait until the pain gets bad. Different pain medicines take different lengths of time to work, from a few minutes to several hours. If your child waits too long to take pain medicine, the pain may get worse before the medicine helps.

To treat your child's pain, the doctor may start with medicines such as acetaminophen. If the pain increases, stronger drugs that require a prescription may be needed. Sometimes, opioids are prescribed. Narcotics are the strongest pain relievers available. Studies show that taking narcotics to relieve cancer pain will not make your child addicted to drugs. When your child is taking opioids, talk to the doctor, nurse, or pharmacist before giving him or her any other medications.

Work closely with the treatment team in sharing information about your child. For example, if you know that your child is afraid of needles, ask the doctor if your child can be given oral medicine. In older children and adolescents, the doctor may order a self-controlled drug "pump." This method uses a portable computerized pump containing pain medicine attached to a needle that is placed in a vein or attached to the central vein catheter. When pain relief is needed, the child presses a hand-held button, and the pump injects a preset dose of medicine into the vein. Pumps are programmed to give preset doses only at preset intervals, so even if the child presses button more than once during the preset interval, he or she will not get any more pain medication than is programmed.

Treating pain in children requires a special understanding of the child and of the child's age. In some cases, you may need to speak for your child, especially if your child is younger than 4 years old. For infants and very young children, you can be of great help by closely watching the expressions on your child's face and carefully listening to the way your child cries. Take note of changes in behavior, such as sadness or isolation or decreased activity. The changes may mean that your child is in pain.

From Wong, D.L., Hockenberry-Eaton, M., Wilson, D., Winkelstein, M.L., Ahmann, E., DiVito-Thomas, P.A.: Whaley and Wong's Nursing Care of Infants and Children, ed. 6, St. Louis, 1999, p. 2040. Copyrighted by Mosby, Inc. Reprinted by permission.

Sometimes, children have pain, but they may not be able to tell you about it. They may be afraid to. It is important to ask if your child has pain. Talk with your child about where and how much pain there is. Use words that your child knows, such as "boo-boo" or "ouch." A good way to determine the amount of pain your child has is to use a pain scale. A frequently used pain scale is the Wong- Baker FACES Pain Rating Scale, which can be used with children as young as 3 years old. On this scale, each face demonstrates a level of pain, from a person who feels happy because there is no pain (hurt) or sad because there is some or a lot of pain. Face 0 is very happy because there is no hurt. Face 1 hurts just a little bit. Face 2 hurts a little more. Face 3 hurts even more. Face 4 hurts a whole lot, but Face 5 hurts as much as you can imagine, although you do not have to be crying to feel this bad. Ask your child to choose the face that best describes the pain. Report the number under the chosen face to your child's nurse and doctor.

Cancer pain almost always can be greatly lessened or relieved, but no doctor can know everything about all medical problems. If your child's doctor is unable to control your child's pain, ask to see a pain specialist. Pain specialists may be oncologists, anesthesiologists, neurosurgeons, other doctors, nurses, or pharmacists. A pain control team may also include psychologists and social workers.

For more information about pain control, you and your child's treatment team may find these NCI booklets helpful:

· Understanding Cancer Pain. You can receive copies from the CIS by calling 1-800-4-CANCER (1-800-422-6237) or TTY at 1-800-332-8615.

Many side effects from cancer treatment may make it hard for your child to eat. Some physical side effects include loss of appetite, sore mouth, changed sense of taste, nausea, vomiting, diarrhea, constipation, and weight gain. The emotional side of cancer treatment may also affect your child's eating habits. When children are upset, worried, or afraid, they may have eating problems. Losing his or her appetite and feeling nauseated can be normal when your child is nervous or afraid. The treatment team, including the nutritionist/dietitian at the hospital where your child receives treatment, can help you plan the food to serve at home. Let the team know if you notice that your child is losing or gaining weight. Ask what has worked for other children. The good news is that even children who have trouble eating have days when eating is a pleasure. The following suggestions may help your child feel more like eating:

· Build meals around your child's favorite foods, but do not force favorite foods during nausea attacks. Forcing may cause a lasting dislike of the food.

· Try always to give high-calorie foods (for example, macaroni and cheese with real butter and cheese, or milkshakes made with ice cream). Add instant breakfast powders to all milk and milk products.

· Let your child eat whenever he or she is hungry or offer food often during the day. Have high-calorie, high-protein snacks handy. Taking just a few bites of the right foods or sips of the right liquids every hour or so can help increase your child's intake of proteins and calories. You can freeze portions of a favorite dish and serve them when your child wants them.

· Oral medicines may affect your child's appetite. Some are best given in the morning, some at midday, and some on a full stomach. Ask the doctor when and how medicines should be given. Tell the doctor if your child has no appetite or has any other side effects.

· Try changing the time, place, and surroundings of meals. A picnic, even if it is in the house, can make mealtime more fun. Watching a favorite TV show or inviting a special friend to join your child at meal or snack time also can help your child feel more like eating.

· Praise good eating. Try using small rewards, such as a favorite dessert or a new toy, to encourage good eating. Siblings should be considered when setting up a reward system. It is important that siblings are not left out, but be careful not to encourage healthy siblings to overeat.

· Avoid arguing, nagging, or punishing. Forcing a child to eat may make things worse.

If your child's eating becomes a serious problem, ask your child's doctor about medicines that can improve appetite.

Sometimes children gain extra weight during treatment because of the buildup of excess water in the body. Do not put your child on a diet. Instead, call the doctor. If the weight gain is due to extra water, the doctor may recommend using less salt, because salt causes the body to hold onto water. The doctor may also order medicines called diuretics to get rid of the excess water.

Children who have cancer need diets high in both calories and protein. High-calorie foods help prevent weight loss, and protein foods help the body stay strong and repair itself. To get your child to eat more protein and calories, try these tips.

· Offer liquids during the day, but not at mealtimes. Liquids are filling and take away an appetite for solid foods. Give your child a straw to make drinking easier.

· Some types of chemotherapy may change your child's sense of taste for a while. Well-seasoned foods, such as spaghetti, tacos, and pizza, may seem good at such times. Sometimes, adding extra salt or sugar, or using less, may make foods taste better.

· Avoid empty-calorie foods, such as soft drinks, chips, and candy, that can make your child's appetite worse without providing good nutrition. Milkshakes, yogurt, fruit, juices, or "instant breakfasts" provide extra calories and protein.

You will also find many helpful suggestions in NCI's booklet Eating Hints for Cancer Patients, available from the CIS at 1-800- 4-CANCER (1-800-422-6237) or TTY at 1-800-332-8615. It is also available online.

Infections are common in children who have cancer, especially in children who are receiving chemotherapy. Chemotherapy lowers the white blood cell count, which increases the chances of infection. You should report any sign of infection, such as a fever, to your child's doctor right away.

Infections are usually caused by bacteria or viruses. To find the cause of your child's infection, the doctor may take samples (cultures) of the throat, blood, urine, or stool. If the infection is from bacteria, your child will receive antibiotics. Antibiotics will not work against viruses. Unless a virus has been identified, however, most children are treated with antibiotics until their blood counts improve, even if bacterial infection cultures are negative. Your child may receive other medicines to help ease the symptoms. If the infection is serious, or the white blood cell count is very low, your child may need to be treated at the hospital. Your child's doctor may also stop the cancer treatment for a short time until the infection is gone.

Some viral infections, such as chickenpox, can cause major problems for a child receiving chemotherapy. Call the doctor right away if your child is exposed to chickenpox or to anyone who has recently received the chickenpox vaccine. And ask your child's teachers to let you know if a schoolmate develops chickenpox. Some families ask teachers to ask schoolmates' families to call them at once if chickenpox develops in their families.

Once children have had chickenpox, they usually do not get it again, but some children on chemotherapy who have already had chickenpox may develop shingles. Shingles is a blister-like skin rash that looks like chickenpox. Instead of appearing all over the body, however, shingles is in just one area. Call the doctor right away if you think that your child may have shingles.

Regular or red measles (also known as rubeola or 9-day measles) may also be more serious for a child on chemotherapy. If your child comes into contact with this type of measles, you should call the doctor. The doctor may give your child medicine to prevent or control the infection.

Most vaccines, and especially live virus vaccines (regular measles, German measles or rubella, mumps, polio, and chickenpox), should not be given to a child receiving cancer treatment, although some doctors do recommend varicella (chickenpox) vaccines for children with cancer and for their siblings. Some immunizations may be dangerous because chemotherapy cancer treatment lowers the body's ability to protect itself when given these vaccines. In addition, brothers or sisters should not receive the live polio vaccines while their sibling is having cancer treatment. You should discuss these matters in detail with both your child's oncologist and your children's primary care provider (for example, pediatrician, clinic, or family physician).

Vaccines that are not live may be safe to give during cancer treatment, including diphtheria, whooping cough, and tetanus immunizations (DPT, DT, or IPV shots). Flu shots are okay, but you should ask your child's doctor before any immunizations are given.

Platelets are blood cells that help the blood to clot. A low platelet count may cause your child to bleed more easily than usual. If your child's platelet count is low, he or she will need to avoid contact activities such as football, soccer, or skateboarding. If bleeding occurs, you may try the following:

· Apply pressure until the bleeding stops - a clean towel, handkerchief, or cloth firmly pressed to the wound will slow or stop the bleeding.

· For nosebleeds, have your child sit up; do not let your child lie down. Pinch the bridge of the nose over the bone for 5 minutes. The pressure must be tight on both sides to stop the bleeding.

Children who have cancer may need to receive whole blood or blood components (such as red blood cells). This procedure is called a transfusion. Packed red cells are often given to control anemia - a condition in which the blood becomes low in red blood cells or in hemoglobin. A platelet transfusion is given if the platelet count is low. White cell transfusions are not routinely given when white blood cell count is low. The doctor may, however, consider white cell transfusions when a child with a very low white cell count has a very serious infection that is not responding to antibiotics.

Each person has a certain type of blood. Each person can only receive the blood of the same type or from the universal donor type "O."

If possible, your child should have a complete oral exam and any needed dental work before cancer treatment begins. Dental care is important during treatment, but even checkups should be avoided when blood counts are low. Always check with the doctor before starting any dental work, and let the dentist know your child is receiving cancer treatment. Your child may need to take an antibiotic before any dental work is done to prevent possible infections. In general, a low dose of amoxicillin is given before even a routine cleaning to patients who have a central venous catheter.

Keeping the child's teeth, mouth, and gums clean to protect against decay is especially important. Make sure your child's teeth are brushed after each meal, using a soft toothbrush. After each use, rinse the brush well with cold water, shake it well, and allow it to dry. Give your child paper cups to rinse his or her mouth. Dental floss may be used if care is taken not to cut or irritate the gums.

During radiation to the head and neck, less saliva is produced, so the mouth becomes dry. This dryness can lead to tooth decay. The doctor or dentist may recommend using a fluoride mouth rinse or order a fluoride gel. Check with your doctor before buying a mouthwash - many can cause burning pain in a child with a sore mouth. All children receiving radiation should rinse their mouths often during the day. One suggested mouth rinse is a mixture of salt and baking soda (1/2 teaspoon of each in a cup of water). To care for infants and toddlers, wrap a soft cloth around your finger and gently wipe the teeth and gums with the mouth rinse. Soft "toothettes" can also be used to apply the rinse to the child's mouth.

When your child's blood counts are low, mouth care needs to be especially gentle; your child can get an infection or start bleeding more easily. Use very soft bristle toothbrushes, cotton or glycerin swabs, or toothettes, and avoid using water jet devices or dental floss. Call the doctor if you see any red or white patches, mouth sores, or irritated areas in the mouth.

When mouth sores, bleeding areas, or irritated areas occur, use only the mouth rinse described above or one the doctor recommends. Your child should rinse the mouth out well after every meal and before bedtime. Cotton or glycerin swabs or toothettes (available in drug stores) can help remove pieces of food from the mouth. If mouth sores become painful, a local anesthetic may help. The doctor can order an anesthetic and will tell you how often to use it. To make eating easier, put the anesthetic on the sore gums before meals. For dry lips, try a lanolin lip ointment to prevent them from cracking and becoming sore.