Side Effects & Concerns

There may be some limits on your child's activities because of their illness. However, it is okay to encourage them to exercise and be active. There are many things your child can do such as walk, hike, throw a Frisbee™ or play miniature golf.

If your child's platelet count is low, avoid activities that may result in bleeding such as roller-blading, skateboarding, etc. and always encourage your child to wear protective equipment. If your child's white blood cell count is low, you may  need to keep your child away from places that are crowded or poorly ventilated. This will decrease the risk of your child getting an infection. If you have questions about how much activity your child should do, please talk with your doctor.

Children being treated for cancer are at an increased risk of developing serious complications if they get chicken pox. Chicken pox is highly contagious and children being treated for cancer, who have not had it, should avoid contact with people who may be infected with the disease. Ask your child's school, neighbors, and family members to tell you about any child who develops chicken pox who may have had direct contact with your child.

Call your care team if:

• Your child develops chicken pox
• Your child has never had chicken pox, has not received the vaccine, and has been exposed to a child with chicken pox.

• Let's Talk About Chicken Pox

Normal bowel movements should be mostly soft and easy to pass. If your child is not having regular bowel movements or has hard, uncomfortable bowel movements they have constipation. Constipation may be caused by lowered activity levels, a change in eating habits, less fluid intake and stress, which are all possible effects of cancer therapy. Medications, including pain relievers and some chemotherapy, can also contribute to constitpation. Children who have some constipation episodes before treatment begins may have more trouble once therapy is started.

Difficult bowel movements may cause small tears in the tissue of the rectum. This can cause discomfort to your child and may be a source of infection or bleeding.

What You Can Do

• Lubricants allow stool to pass more easily through the intestines. An example of a lubricant is mineral oil. Mineral oil is taken by mouth and can be placed easily in small amounts of food.
• Stool softeners help keep moisture in stool. Examples include Docusate or Lactulose. Both are available without prescriptions. Stool softeners are not absorbed by the body but stay in the bowel to help the stool be softer as it is formed. These medicines come in capsule and liquid forms.
• Laxatives stimulate the intestines, causing their contents to move. Examples include Dulcolax and Senokot which are available without prescription. Laxatives are best used for a short period of time.
• Osmotics help bring fluid into the intestine from other body tissues so stool can be passed more easily. Examples include Milk of Magnesia and citrate of magnesium. Bulk-forming osmotics pull in water from the stomach to make the stool softer. Examples include Miralax® and Metamucil®.
• An enema is the flushing out of the bowels using fluids instilled into the rectum. During an enema, the tissue of the rectum may become injured and an infection may happen. Enemas should be avoided during your child's cancer treatment.  Contact your care team before using an enema.

Call your care team if:

• Your child has constipation and you have questions about how to manage it.
• Your child has a bowel movement with blood in it.
• Your child has discomfort during or after bowel movements.
• Constipation continues once medicines your doctor prescribed have been used for 48 hours.

•  Let's Talk About Constipation

Diarrhea is an increase in the number of bowel movements as well as an increase in the water content of the stool. Common causes of diarrhea include:

• Infection by viruses, bacteria, or parasites
• Certain medicines: antibiotics such as amoxicillin or erythromycin and some chemotherapy
• Emotional upset
• Poisoning from drinking contaminated water or eating spoiled food
• Overuse of stool softeners or laxatives
• Food allergy

Often, the exact cause of the diarrhea is unknown. You may be asked to collect a stool sample. This sample can be tested in the lab to see if there is an infection. If the diarrhea is caused by an infection, you will need to be sure the infection is not spread to anyone else, encouraging your family to wash their hands and keeping the bathroom clean, may help. Remember to wash your hands after changing diapers as well. Your physician may prescribe medicine to help fight the infection.

While there are many over-the-counter medicines that can be used for the treatment of diarrhea, it is important to talk with your care team before using any medicine for diarrhea. Anti-diarrhea medicines may not be helpful, especially if the reason for the diarrhea is infection. In fact, anti-diarrhea medicines may make the condition last longer. If your child develops diarrhea, it is best to wait a minimum of 12 hours before giving anything to lessen the diarrhea. Many times, the diarrhea will lessen on its own.

Infants with diarrhea develop diaper rash quickly. Change diapers frequently to lessen the time the skin is exposed to the diarrhea. Avoid baby wipes that contain alcohol to clean the diaper area when there is a rash or sores instead use water in a spray bottle or squeeze bottle to clean the diaper area and then pat dry with a clean towel. Replace the water in the spray bottle daily and clean the diaper changing area after each diaper change. Older children may also get a sore bottom when they have diarrhea. Have your child wipe with a clean, moist cloth after each bowel movement to keep the skin clean and decrease the chance of sores.

Diarrhea affects the entire bowel and even the stomach. Since contents are passing quickly through the stomach and bowel, the body may not be able to absorb needed nutrients and fluids.This may result in dehydration, especially in infants and small children.

Signs of dehydration:

• A small amount of urine and/or dark yellow urine. A baby less than one year old should have 6-8 wet diapers in a 24-hour period. An older child will usually urinate every 6-8 hours.
• Unusually sleepy or tired
• Sunken or dry eyes
• No tears
• Sunken soft spot on top of a baby's head
• Dry mouth (no spit)
• Dry or wrinkled skin
• No urine for 12 hours or more

The most important thing is to make your child comfortable and assist them to drink fluids to avoid getting dehydrated. Call your care team if:

• Your child has diarrhea that lasts longer than 12 hours
• Your child has signs of dehydration

Radiation therapy to the head may lessen the amount of saliva and cause dry mouth. Less saliva may make food difficult to chew or swallow. There are a number of products available to help with dry mouth. Most of these products cause more saliva to flow. Chewing gum seems to be kids' favorite. Other products include a synthetic saliva and special toothpaste. Talk to your health care provider for suggestions.

What you can expect:

• Your child's sense of taste may change.
• Your child may have difficulty chewing and swallowing.
• Your child will have an increased risk of plaque build-up and dental decay.

Things you can do to lessen dry mouth:

• Encourage your child to drink plenty of fluids.
• Have your child try sucking on hard candy or chewing gum, both of which make more saliva. (Not recommended for toddlers or preschoolers)
• Serve foods with sauces, extra butter, dressings, or gravies.
• Ask about special products available to lessen dry mouth.
• Schedule a routine dental exam within six months of diagnosis.
• Schedule routine dental exams every six months while undergoing treatment.

One of the most important signs you should watch for during your child's treatment is fever. Fever is the most common sign of an infection. An infection can be an emergency for children with a low white blood cell count (neutropenia), as a side effect of chemotherapy. A normal temperature measured by mouth is 98.6°F (37°C) and can be between 97°F to 99°F (36.1°C to 37.2°C). It is normal for your child to have a slightly higher temperature at night than they did in the morning. You can check your child's temperature by mouth (oral temperature), in the ear canal (tympanic), or under the arm (axillary). Do not take your child's temperature rectally during treatment.

Safety Alert!

A rectal temperature should NEVER be checked now that your child has been diagnosed with cancer. The skin of the rectum can become easily torn and then there is a risk for serious infection. Also, if your child's platelet count is low, there is a risk of bleeding.

Thermometers

It is important to own a thermometer and know how to use it correctly. There are two types of thermometers that would work for you. A digital thermometer is relatively inexpensive, they are sturdy and most types beep when they are ready to be read. Ear thermometers (tympanic) are very convenient and work the fastest, but are more expensive. You should not use an old glass and mercury thermometer.

Checking a Temperature under the Tongue

Children who are old enough to hold the thermometer under their tongue without biting the thermometer can have their temperature checked by mouth.

• Wait 30 minutes after your child has eaten hot or cold food before checking her temperature.
• Place the tip of the thermometer under the tongue at the back inner corner of the last tooth.
• Ask your child to keep her mouth closed snugly without biting the thermometer.
• Wait until the digital thermometer beeps.

Checking a Temperature under the Arm

Younger children who can't hold the thermometer in their mouth or older children with mouth sores could have their temperature measured under their arm.

• Dry the child's underarm area.
• Place the tip of the thermometer under the arm and hold the arm snug against the body.
• Wait until the digital thermometer beeps.

Checking a Temperature in the Ear

Many people find it easy to use an ear thermometer. Read the directions that come with your thermometer. Buildup of earwax, an ear infection, or improper positioning can cause the reading to be incorrect. If in doubt, check the temperature in the other ear to see if it is the same.

• Take the temperature in the ear that the child is not lying on.
• Insert the thermometer directly into the ear, pointing toward the ear drum. 
• You may need to pull back gently on the top of the ear to allow for the thermometer to be placed in the ear canal.
• Push the button and wait until the thermometer beeps.

What Does a Fever Mean?

Fever in a child with cancer can be serious. Don't try to treat a fever yourself or decide to wait until morning to contact your care team! When your child's white blood cell count is low, a fever may be the only sign of an infection. White blood cells are what cause the other signs of infection—pus, redness, pain and swelling. Your child may not show these signs when the white blood cells are low. The infection may be caused by a virus such as a common cold, or bacteria. Infections can be life-threatening when the immune system is suppressed.

Call the clinic or the oncologist on call if your child has a fever.

• One time temperature of 101 F (38.3 C) or more; or
• A temperature of 100.4 F (38.0C) or more, lasting more than an hour.

What happens if  my child has a fever?

Call the doctor to report that your child has a fever. The doctor will ask you about your child's most recent blood counts and when your child received chemotherapy last. If your child's blood counts haven't been checked recently, the doctor will often recommend that your child get a complete blood count (CBC) drawn. If your child is at a point in treatment when low counts are expected, you will be asked to come to the clinic or go to your local emergency department.

If you live outside the Salt Lake area, still call the clinic or oncologist on call and they will advise you what to do. The physician may ask you the name of your local doctor and have that doctor meet you at your local emergency department. If your providers have questions once they examine your child, they will call the oncologist for advice about your child's care.

A physical exam is performed on your child either in the clinic, at your doctor's office, or at a hospital. During this exam, the doctor looks for potential sources of an infection such as breaks in the skin and irritation at the central line site.

A blood culture is taken from your child's central line. The blood culture will give information about what kind of infection, if any, your child has. If your child's blood counts are low (ANC less than 500), they may be checked into the hospital for IV antibiotics. Your child most likely will be in the hospital for at least 48 hours. He/She must stay because the doctor wants to know the results of the blood culture and see the fever go away. Before your child can go home from the hospital, they should be free of fever for 24 hours and have negative blood cultures or have cultures show that there is not an infection.

• If your child's blood counts do not go up, but there is no fever and the blood cultures are negative, your child may be able to go home on IV antibiotics if their ANC is higher than 500.
• If bacteria are discovered in your child's blood, he/she will have blood cultures taken each day. Once the cultures are negative for bacteria, they may be able to go home if he/she has had no fever for 24 hours and blood counts are getting higher. When home, he/she may continue antibiotics.
• We are always very concerned about the source of a fever. Children who keep having fevers stay in the hospital.

If your child has a fever:

Do:

• Call the clinic immediately after you find your child has a fever.
• Call the on-call physician at night, on weekends or on holidays.
• Dress your child in thin pajamas and sheets rather than heavy bedclothes.
• Give your child plenty of fluids. 
• Keep your child in a well-ventilated room.

Don't:

• Don't wait to call the clinic
• Don't leave a message to report a fever to the clinic. Do ask the hospital operator to contact the on-call oncologist, or go to the emergency room.
• Don't second-guess the cause of the fever.
• Don't give aspirin.
• Don't give your child alcohol baths or cold water baths.

Chemotherapy affects all fast-growing cells. The roots of hair, called hair follicles, grow rapidly and are affected by many types of chemotherapy, causing the hair to fall out. Children usually begin to lose their hair 14 to 21 days after a course of chemotherapy. Hair loss is most noticeable several weeks later. The type and amount of hair loss varies from one person to another and with the type of chemotherapy used. Healthy, normal hair will grow back. There is no relationship between the amount of hair loss and how well the medicine is working.

Hair loss can be very upsetting, especially for teenagers. Most kids don't like looking different from other kids their age. Hair loss can also be upsetting for parents, as it is a clear sign that your child is being treated for cancer. Children may choose to use wigs, scarves, and other head covers to help them feel more comfortable. Hairpieces, as a result of medical treatments, are tax-deductible and may be partially covered by your health insurance. Check with your insurance company. Before investing a great deal of money in a wig, please talk to your social worker, who can suggest options and organizations to help with hairpieces.

Do:

• Talk about hair loss before it happens.
• Ask your child if they would like to cut hair into a short, manageable style.
• Help your child decide what head cover they will be most comfortable with i.e., hats, turbans, scarves, wigs, hairpieces, or nothing at all.
• If your child decides to wear a head cover, it may be helpful to choose and become accustomed to the covering before your child loses her hair.
• Use mild shampoos during treatment.
• Use soft hair brushes and low heat when drying your child's hair.
• sleeping on a satin pillowcase may lessen the amount of hair tangling.
• Apply sun protection (hat and sunscreen with SPF 15+) on bald heads.

Regular childhood immunizations will not be given while your child is receiving treatment. The influenza immunization (flu shot) is the one exception. Chemotherapy and radiation therapy lower your child's immune system. As a result, your child may not develop the needed protection from immunizations. Immunizations will be resumed after your child has been done with treatment for 6 to 12 months. Your child will not need to repeat immunizations that were given before the start of treatment. Ask your physician when your child may receive immunizations.

Influenza (flu): The influenza immunization (flu shot) is recommended for your child and your family members while your child is receiving treatment. Your child should not receive the nasal spray form because it contains a live virus. Giving the flu shot to all household members will lower the chance of other children bringing the flu home to the child being treated for cancer.

Siblings and other household members should be able to receive most routine childhood immunizations. Be sure to check with your child's doctor if you have any questions. The following guidelines for immunizations are recommended:

• Polio: Siblings and other household members should receive the inactivated polio virus (IPV) immunization and not the oral polio vaccine (OPV). The IPV immunization is what is routinely given to protect against polio. 
• Varicella (chicken pox): Siblings and other household members should receive this immunization if they have not had chicken pox. This will lower the chance of bringing chicken pox home to the child being treated for cancer.

When your child is treated for cancer, he/she is at greater risk for developing serious infections. Chemotherapy and/or the disease causes his/her body to produce less infection-fighting cells (white blood cells). Infections in your child, whether caused by bacteria, virus, or another germ, may require immediate medical attention.

The skin acts as the first barrier to infection. A break in the skin, such as a cut or scrape, opens the skin and makes it easy for bacteria to grow. Mouth sores and the site where your child's central catheter enters the skin are considered breaks in the skin. These are places where infection can occur easily. Bacteria are normally present on the skin, in the mouth and nose, and throughout the digestive tract. Good hygiene can lower the risk of getting a serious bacterial infection. Daily baths reduce the number of normal bacteria on the skin. Careful mouth and dental care reduce the number of normal bacteria in the mouth.

Constipation and diarrhea can cause serious infections. If your child becomes constipated (hard, difficult bowel movements), the delicate tissue lining in the rectum and anus can become broken, irritated, and inflamed. Most of the bowel movement is made up of bacteria and waste products. If the tissue is broken, bacteria from the bowel can easily enter the bloodstream. Diarrhea may contribute to skin breakdown or diaper rash.

Children with cancer are at greater risk to develop a specific type of pneumonia called pneumocystis pneumonia (PCP) which is a very dangerous form of pneumonia. An antibiotic (Septra®, Bactrim™), given twice a day, two times a week, can greatly lessen the chances of getting this life-threatening pneumonia. Your child will need to take this medication until he/she is off treatment for six months. If your child is allergic to this medication a different medication will be prescribed.

Viral infections are difficult to prevent. Frequent hand washing by all members of the family will lessen the chance of viral infections. Also, try to avoid having your child around large groups of people in small, poorly ventilated areas when their ANC is less than 500.

Adolescents who are sexually active should avoid sex during periods of low blood counts. Sexual intercourse may increase chances of getting an infection. Condoms should always be used to keep bacteria from entering the bloodstream and to guard against infection with sexually-transmitted diseases.

The best way to prevent an infection is to have everyone wash their hands.  In addition have your child:

• Take daily baths or showers.
• Perform good dental hygiene.
• Use good toilet habits.
• Wear shoes or slippers to prevent cuts.
• Wash any cuts or scrapes with antibacterial soap and cover with a clean bandaid. Change the band-aid at least every day.
• Have routine dental exams every six months.
• Stay away from large crowds in small spaces when your child's ANC is less than 500.
• Have other children in the family immunized for chicken pox if they have not had the disease.
• Have family members immunized against the flu every year.

Don't:

• Don't allow friends/family visit if they have a cough or active illness.
• Don't allow your child to eat raw meat, raw fish, or raw eggs, unpasteurized milk, unpasteurized cheese, or unpasteurized juices.
• Don't allow your child to swim in ponds or rivers.
• Don't submerge your child's external catheter in water (bath tub, pool, hot tub or stream). 
• Don't share toothbrushes, drinks, food, or thermometers with other children.
• Don't have your child clean up after pets (dogs, cats, birds, horses, etc.).
• Don't perform rectal temperatures or use suppositories, enemas, tampons, or douches.

Call your care team if:

• Your child develops shaking chills with or without a fever.
• Your child develops a fever:
  • One time temperature of 101 F (38.3 C) or more;
  • or a temperature of 100.4 F (38.0C) or more, lasting more than an hour.

• Let's Talk About Visitors in the Home (Friends and Family)
• Let's Talk About C-Difficile
• Let's Talk About MDRO

Nausea is the feeling of being sick to your stomach. Vomiting is when you throw up what is in your stomach. Most children who receive chemotherapy have some nausea and vomiting as a result of cancer treatments. Severe nausea and vomiting can be dangerous for your child's fluid balance, nutrition, and general feeling of wellness.

Medicines for nausea have greatly improved over the past few years, so we are able to better control this side effect of cancer treatment. When your child receives a type of chemotherapy that normally causes nausea and vomiting, your doctor will prescribe a medicine to lessen nausea and vomiting. This medicine is given before the chemotherapy dose and then on a regular schedule afterward. The number of doses will vary. The most common anti-nausea medicine (anti-emetic) prescribed is Zofran®. Other medications may also be used. These medicines work best if given to your child before nausea happens and then are continued for the correct time period whether your child is nauseated or not.

Your child may have nausea and vomiting despite using these anti-nausea medications. Other medicines are often prescribed for "break-through" nausea. The most common medicines for break-through nausea are Phenergen®, Benadryl® and Ativan®.  If your child continues vomiting for more than two days after chemotherapy, the type of anti-nausea medicine may need to be changed to a different anti-nausea medicine. Please let the clinic or physician know. Your child may also have less of an appetite for a few days after chemotherapy.

As your child goes through treatments, you may be asked which anti-nausea medicines work best for your child. Parents frequently know what has worked best for their child in the past. Whenever possible, the team will follow this plan.

Many people complain that the smell of the hospital makes them feel nauseated. If your child has that problem, you may bring an air freshener from home. If the smell of food makes your child nauseated, you may post a sign on the door stating that you would like the food tray left outside the room. Some children want the food but don't like the smell of the warm plastic tray. You may take the food off the tray and bring in just the food on the plates. You may want to try alternative methods of nausea control such as visual imagery, distraction, sleep, massage, etc. These methods can be very effective. Ask the health care team if you need assistance with finding ways to lessen your child's nausea and vomiting.

When you go home after  a chemotherapy treatment, watch your child for nausea and vomiting. You may continue to give medications for nausea at home. If your child is not taking in enough fluids they may become dehydrated.  Fluids can be given at home through an IV catheter if your child is having difficulty drinking enough on her own. Your child may need to come to the hospital if she continues to have problems with nausea and vomiting that cannot be controlled at home. 

If your child is sick to her stomach Do:

• Watch for dehydration
• Have your child drink clear fluids often and in small amounts.
• Encourage your child to drink the recommended amount each day:
  • 1-3 years old: 4-6 cups/day
  • 4-6 years old: 6-8 cups/day
  • 7-12 years old: 7-11 cups/day
  • +12 years old: 8-12 cups/day
• Raise the head of your child's bed after eating or have her sit up next to the bed.
• Have your child eat bland foods, clear broth soups, toast, and potatoes.

Don't:

• Don't serve sweet, fried, or spicy food.
• Don't wear strong perfumes.
• Don't serve foods with strong odors (fish).

Call your care team if:

• Your child is unable to keep fluids down at home.
• You think your child may be dehydrated (urinates less frequently or urine is dark yellow).
• Your child continues to vomit more than 2 days after chemotherapy.
• Your child is unable to eat solids 3 or more days after chemotherapy.

Nosebleeds come from the breaking of small blood vessels inside the nostrils on the cartilage dividing the nostrils. Bleeding can happen because of very dry air, nose picking, sneezing, strong nose-blowing, or a low platelet count. A nosebleed that is difficult to stop may be caused by low platelet counts. Your child may vomit after a nosebleed because swallowed blood can upset the stomach. Your child may have dark, thick bowel movements or diarrhea if they swallow blood during a nosebleed.

Stop a nose bleed by:

• Tilting your child's head slightly forward so the blood does not run down your child's throat. This way, you can also see when the bleeding has stopped.
• Apply firm, constant pressure by pressing the sides of the nose together. It may take 10 minutes or more to stop the bleeding.
• Try placing an ice pack over the bridge of the nose. This makes the blood vessels tighten.

Do:

• Use a room humidifier in your child's bedroom.
• Change the water daily.
• Apply a water-soluble jelly (K-Y Jelly®) with a cotton swab into the nasal canal to keep the tissue from being dry.
• Keep your child's fingernails cut short.

Don't:

• Don't allow your child to pick her nose or blow her nose hard.

Call your care team if:

• The nosebleed lasts longer than 10 minutes or is severe.
• The nosebleed does not stop using pressure and ice.
• The nosebleed is caused by a head or face injury.

Good mouth care is important for everyone. It is especially important during chemotherapy treatments because it can prevent infections. The mouth normally has bacteria and yeast in it, which help break down food even before it is swallowed. Any break in the skin or in the mouth may be a place for bacteria or yeast to enter the bloodstream and cause a serious infection.

Regular visits to the dentist are important. Most dentists recommend that your child have the first dental check up by age two. If your child has not been to a dentist in the year before being diagnosed with cancer, ask your physician when to schedule a dental exam. Routine dental cleanings should be done every 6 months.

Your child's blood counts must be within a safe range before any dental procedure. This includes work on braces, routine cleaning, or other dental procedures such as having a tooth pulled or capped. If your child has a central venous catheter, notify your oncologist if your child is going to have dental work and to let the dentist, hygienist, or orthodontist know your child is being treated for cancer. Children who have a central venous catheter need antibiotics before dental work. The antibiotics keep bacteria from infecting the bloodstream. Bacteria are attracted to the catheter. Let your doctor know if your child will be having dental work.

Mouth Care

Children with cancer are encouraged to brush their teeth after meals (or twice a day) with a soft bristle toothbrush. This will lessen the number of bacterial in the mouth. Dental floss and mouthwash may also be used  if your child is not bleeding from their gums. Making sure that your child gets enough to drink each day also will help keep the skin in the mouth healthy. A bland mouth rinse can also help keep your child's mouth clean. Bland rinses include normal saline or ½ teaspoon of baking soda mixed in a cup of water. Alcohol-based mouthwashes can sting and cause more sores in your child's mouth. Check your child's mouth daily for white patches or sores.

Baby Teeth

Baby teeth, also called primary teeth, are important because they are the foundation for permanent teeth. Primary teeth should be cared for just as carefully as permanent teeth to prevent cavities and infections. Baby teeth begin to fall out around the age of six. Since they provide the correct spacing for permanent teeth, allow the teeth to fall out naturally. Discourage your child from playing with a loose tooth. Wiggling a tooth that is not ready to come out may damage the gums and cause bleeding. The bleeding may be excessive if your child's blood counts are low and there is an increased risk of infection.

If your child's dentist or orthodontist recommends pulling a baby tooth, let him or her know that your child is being treated for cancer. Your dentist can then talk with the clinic to determine if the procedure is safe or if the tooth should be allowed to fall out naturally.

Mucositis (Mouth Sores) and Esophagitis

You might hear mouth sores called mucositis. Several chemotherapy drugs may cause mouth sores, although these drugs might cause mouth sores, they may be the best drug for treating your child's cancer. Infections, like yeast, can also cause mouth sores.  A virus called herpes can also cause mouth or lip sores. People call these sores "cold sores." Most children are exposed to oral herpes as newborns. They can develop severe mouth sores, even though they have a normal immune system when they first get the virus. The virus stays inactive in the body. When the body is stressed or the immune system is low, the virus may become active and cause mouth or lip sores.

It is difficult to tell just by looking at the sores whether they are caused by a virus or the chemotherapy. Your local doctor or the staff in the oncology clinic can get a small sample of a sore by brushing a cotton swab over it. The swab is then sent to the laboratory where tests are run to tell if the sore is caused by a virus. If your child's immune system is low, she may need medicines to help fight the virus.

Esophagitis is sores in the lining of the esophagus. The soft, pink lining of the mouth also lines the throat, esophagus, and intestinal tract (gut). The same process that causes mouth sores may cause esophagitis. The esophagus goes from the mouth to the stomach and is where the food goes down when we swallow.

Mouth sores and sores in the esophagus can be painful but there are some steps you can take to lessen the discomfort and encourage eating. Many children report that drinking cold liquids often helps the mouth feel better. A numbing mouthwash is available by prescription. This mouthwash can be swished and spit out before meals or every two hours. Another numbing alternative is to apply "Numzit®," the over-the-counter medicine used for infants who are teething. You can put the Numzit® directly on the site of discomfort with a cotton swab. Neither the mouthwash nor the Numzit® should be swallowed. Synthaloids®(or Cepacol®) are non-prescription lozenges. They can be sucked on to soothe a sore throat.

What to expect:

• Your child may have a sore mouth, visible sores, a sore throat, difficulty swallowing, thick secretions, or a throat-clearing cough about 3 to 7 days after chemotherapy. 
• Mouth sores heal as your child's blood counts improve.
• If your child is unable to drink enough, she may need IV fluid at home.
• More effective pain medicine may be needed if cold liquids, numbing medicines, prescription mouthwash, and acetaminophen (Tylenol®) are not enough to help your child be comfortable.
• Your child may need to be admitted to the hospital if she develops a fever, is dehydrated, or is in too much pain.

Learning how to help your child with discomfort is important, whether the discomfort is from something as normal as a skinned knee or whether there is discomfort from medical procedures related to cancer treatment. Your child will have times when she will have discomfort and even pain. An educational booklet called "Managing Your Child's Pain" has been written to provide you with more information on this important topic. Please take time to read it.

• Managing Your Child's Pain

Managing Discomfort with Medicines

Medical procedures can cause discomfort and be very stressful. It will be important to explore options and find a way to increase your child's comfort during procedures. You and your child may choose to use medicines to help during these times. Medicines can be used to increase comfort, relax your child, or help your child sleep (sedate your child) during uncomfortable procedures. The ideal medicine for discomfort is one that is easy to give to a child, works exactly how you think it will, provides pain relief, but only lasts a short time and has few side effects.

Local anesthesia (applied to the skin)

There are two types of local anesthetics that are frequently used on ICS and in the clinic. Local anesthesia lessens the ability to feel pain in the area where they are used, are easy to use, work well for short procedures, and have few side effects.

EMLA® (pronounced "em-la"). is a cream put on the skin one to two hours before an uncomfortable procedures. Your child only needs a thin, clear bandage to keep the cream in place. EMLA® works on just the area needed and the effects last for about an hour after the cream is taken off. EMLA® is frequently used for accessing Port-a-caths but can also be used for lumbar punctures, bone marrow aspirates, I.M. injections, etc.

Ethylchloride, is a "freeze spray". It is sprayed onto the already cleaned site for 5-10 seconds, producing a very cold sensation to decrease the sensation of pain. It wears off a few minutes after it's applied. Ethylchloride is most frequently used, on ICS and in clinic, for accessing Port-a-caths.

Managing Discomfort without Medicines

Your child's age, personality, and temperament all play a role in determining which methods may work best to increase comfort for your child. Consider talking with a child life specialist for assistance with learning the techniques listed below.

Distraction

Distraction is used to help your child focus on something other than discomfort. There are many ways you can distract a child. You must keep in mind the age of your child and what will work for your child. Read a book, listen to music, stare at an object or photo, recite a familiar nursery rhyme, count, practice the alphabet, gently blow bubbles, gentle touch, and soothing conversation. Practice these techniques at home in a comfortable environment.

Positions of Comfort

During a procedure (for example, changing a central line dressing, accessing a port or giving a shot),  it may be important for your child to maintain a certain position for the procedure to be successful. This can make your child feel scared or uncomfortable. When possible, your child can be in a position that feels familiar, safe, and more comfortable. These positions are called positions of comfort. Ask a child life specialist for more information.

• Helping Your Child Cope with Medical Procedures

Deep Breathing

Encourage your child to breathe gently through the nose and blow out through the mouth. Breathe gently with your child. Have him/her focus on the breaths. Once his/her breaths are slower and deeper he/she will relax more. Use images your child will understand when explaining the breathing; for example: "breathe in like you are smelling a beautiful flower; blow out slowly, like you're blowing bubbles."

Positive Self-talk

Positive self-talk is used before an uncomfortable procedure and should continue during the procedure. Encourage your child to replace negative thoughts with positive ones. Positive self talk can be a "self-fulfilling prophecy." Help your child replace thoughts such as "I can't do this," or "this is going to be really hard" with comments such as "I may feel this, but it will feel better soon," "what it feels like to me is…" or "I can do this."

Imagery

Help your child see a picture in his/her mind of something he/she likes. Some things children like to visualize are recent vacations, amusement parks, movies, nature, or animals. You may also tell your child a story in a soothing voice and ask for pieces of the story. Encourage your child to describe the details of the story (what he/she hears, feels, tastes, smells, or sees). Practice this technique with your child at home in a non-threatening environment.

A number of studies have shown that pets can improve a patient's well-being during illnesses. Pets that are already in the household may stay. The exceptions are snakes, turtles, and iguanas. They may carry harmful bacteria that could infect your child now that her immune system is not as strong. These pets should not stay in the home.

Decisions to add a pet to the family can be discussed with the oncologist. The biggest decisions regarding adding a new pet into the family have to do with added responsibility, pet dander, age of the children in the home, and the presence of family members who have lowered immune systems. You may want to avoid getting puppies or kittens. They tend to bite and scratch more often, which is a problem because bites and scratches may cause infection.

Age is important because the normal activity and curiosity of a toddler or young child may also cause animals to bite. Dog or cat bites may result in a bacterial infection. If your child is bitten, clean the wound and call your doctor. Diseases that may be transmitted by animals may be even more serious for people undergoing treatment for cancer. Your child should not be responsible for changing the cat litter, cleaning up after the dog or horse, cleaning out birdcages or fish bowls. The bowel movements of many animals, humans included, contain bacteria. The person cleaning up after the animals should wash her hands thoroughly afterwards.

Your children may share bedrooms during cancer treatment, especially if this has been the arrangement prior to your child being treated for cancer. It would be hard to add another change to your child's life. However, the entire family should practice good hand washing techniques and stay away from your child when they are ill.

If a sibling is ill, he should have less contact with the child receiving chemotherapy until the illness resolves. An ill child should not sleep in the same room with your child who is being treated for cancer.

Some chemotherapy drugs may make your child's skin more sensitive to the sunlight. This can happen in the summer, winter, or even when sitting in a sunny window. Use a sunscreen with a SPF15 or greater, even on overcast days. Skin care is important throughout treatment. Skin provides protection from the environment and it is your child's first line of defense from infection.

Short hair or no hair will expose sensitive areas on the back of the neck, tops of the ears, or scalp. Higher elevations expose us to more harmful ultraviolet (UV) radiation from the sun. At 5,000 feet above sea level, as in Salt Lake, the intensity of sunlight is 20 percent greater than at sea level. Other factors such as fresh snow, concrete, and sand reflect the sun and can cause sunburn. Even a thin cloud cover lets in 60 to 80 percent of the damaging ultraviolet rays. The best advice is to use a sunscreen with an SPF of 15 or greater on all your children when they are in the sun. Clothing provides an SPF of about 40. Have your child wear a tight-knit long sleeve shirt and a hat when outside. Remember that all sunscreens need to be put on again after your child swims or sweats.

Keeping your child's skin clean and moisturized is the first step in protection. Children should bathe every day in a warm (not hot) bath or shower. They do not need to use special soaps, but it is best to avoid skin products that are harsh or dry out skin. Instead use fragrance-free moisturizers and soaps.

Do:

• Have your child take a bath or shower every day.
• Apply sunscreen with a SPF15 or greater before going outside and after swimming or sweating.
• Add 2-3 capfuls of baby oil or Keri® oil to your child's bath.
• Apply moisturizing lotions to the skin immediately after a bath. This is when they are best absorbed.
• Use moisturizing soaps without strong fragrances.
• Have your child wear sunglasses to protect the eyes and hats that cover the ears and the back of the neck.

Don't:

• Don't use harsh detergents or deodorant soaps.
• Don't use bubble baths, because they may dry out skin.
• Don't use skin care products with fragrance.
• Don't allow direct contact between your child's skin and strong cleaning agents, paint, or thinners.
• Avoid skin products containing alcohol.

Call your care team if:

• Your child develops a sunburn.
• Your child's skin is red, scaly, or tender.
• Your child has itching that interferes with sleep or comfort.
• Your child develops new open areas or sores on the skin.

Shingles is a skin infection that is caused by the same virus that causes chicken pox. The chicken pox virus actually never leaves a person's body once they have had the infection. The virus hides out in the skin along the endings of the nerves. If the body later becomes stressed or the immune system is suppressed, the virus may wake up and start another infection. The first sign of shingles is a tingling feeling on the skin in one area of the body. Within a day or two blisters appear on the skin where the tingling occurred. Interestingly, the infection only occurs on one side of the body or in just one area of the body. The rash is itchy and uncomfortable. If the blisters are opened up, there is a risk of a skin infection occurring.

If your child develops shingles, an anti-viral medicine will be started at once. The purpose of the anti-viral medicine is to prevent more pox. Your child may also need to be given pain medicines to increase comfort.

If your child develops shingles Do:

• Call the clinic or the on-call oncologist immediately!
• Encourage your child to drink plenty of fluids.
• Give acetaminophen (Tylenol®) for fever—do not give aspirin.
• Have your child dress in loose, comfortable clothing.
• Give medicine to control itching and discomfort.
• Trim your child's nails short to lessen the problems that come with scratching.
• Try an oatmeal bath to lessen the skin irritation.

Talk to your oncologist before you make travel plans. Travel may be more appropriate during certain phases of treatment than others. Keep in mind that travel plans may need to be changed at the last minute if your child becomes ill or treatment is rescheduled.

Before traveling, be sure to know the name and phone number of a children's hospital near your destination where you may seek emergency care if your child becomes ill. You should have information about your child's diagnosis, treatment phase, current medicine, allergies, and recent complications with you.