We know it may be stressful when caring for your child at home. Your health-care team will provide many helpful resources to guide and support you. As necessary, home health nurses may become involved. The following information provides helpful tips and hints.
Bacteria can cause serious infections in children who have low white blood cell counts. Bacteria normally live on the skin and in the body. A healthy immune system and white blood cell count prevent the bacteria from causing a serious infection. However, when the white blood cell count is low, the chance of getting an infection goes up. Children who have central lines also have a higher risk of getting a bacterial infection in the blood.
If your child gets a fever, it is important to call your doctor right away. Your child may need to come to the hospital or clinic to get antibiotics to treat the infection. Before antibiotics are started, blood cultures may be taken to see if bacteria are in your child's blood. Blood culture results may take up to 72 hours. Until the blood culture results are known, the doctor will order antibiotics that are most likely to kill the most common types of bacteria in children with cancer. If bacteria are present, the culture will help your doctor know whether to change to another antibiotic.
"Opportunistic" infections happen only when the immune system is not working well. When that happens, germs that don't usually cause problems have an opportunity to cause infection. These infections include fungus (thrush or yeast) and a type of pneumonia call pneumocystis. Your doctor may give your child a medicine called Bactrim or Septra (trimethoprim-sulfamethoxazole) to help prevent pneumocystis. If your child cannot take this medicine by mouth, other medicines may be given.
Children who receive cancer treatment can get common viral illnesses such as colds and diarrhea. In most cases the body's defense system can handle these infections. Some viral illnesses such as chicken pox and shingles can be more serious in children with cancer. Both infections are caused by the varicella virus.
- Chicken pox
In healthy children, chicken pox is a common, usually mild childhood illness. Chicken pox is caused by the varicella virus. It is spread through the air. The infection usually starts with flu-like symptoms, such as fever and feeling tired. After a day or two, an itchy rash appears. Small red spots with a clear, fluid-filled center appear on the face, head or chest. The spots spread down over the arms and legs. New spots can continue to appear for three to five days. After a few days, the spots or “blisters” will dry up and form crusts.
For children who are receiving cancer treatment, chicken pox may be more serious because the immune system is not working well. If your child has been exposed to chicken pox or anyone in your family gets chicken pox, call your doctor right away. Exposure to chicken pox means that your child has been around a person who has chicken pox or who broke out with the spots one or two days after playing with your child. Chicken pox is spread through the air. To be exposed, your child must breathe the same air as someone who has the illness. If other children in your family are exposed to chicken pox, they do not have to leave your home. Wait and see if they do get chicken pox.
Child has not had chicken pox
If your child has not had chicken pox or the vaccine and is exposed, your child will need to get a shot of varicella immune globulin. This shot has antibodies that help to prevent or decrease the severity of chicken pox. For the shot to work, your child must get it within 72 hours of the exposure.
Child has had chicken pox or chicken pox vaccine
If your child has had chicken pox in the past or has received the chicken pox vaccine, he or she may have antibodies to fight the virus and does not need to get the varicella immune globulin shot. As your doctor if your child is at risk for getting chicken pox.
If your child gets chicken pox
If your child has symptoms of chicken pox, call your doctor right away. Do not bring your child or siblings to the clinic if they've been exposed to or have chicken pox. The doctor may order a medicine called acyclovir to be taken by mouth or through an IV to help control the infection. Your child may need to be admitted to the hospital for observation and treatment.
Shingles is another type of infection that is caused by the varicella virus. The virus stays in the body long after the infection goes away. If the immune system is not working well, the virus may become active again.
Shingles usually occur as a patch of red blisters along a line on the skin on the back, chest or other part of the body. Shingles can be painful, causing a deep, burning feeling. Your child may need to be admitted to the hospital for observation and treatment.
Whether at school, home, or in your community, your child will be exposed to germs. We all have germs on our skin and in our mouth and gut. Germs can also be found in the environment and in people with infections. Some suggestions for preventing infections in your child with cancer are described below.
Encourage your child to wash his or her hands often to prevent the spread of germs from one person to another. Handwashing is the most important way to prevent infection. Encourage your child not to share cups, eating utensils or toothbrushes. Also see GREAT information fact sheet: Clean hands
Screen visitors and playmates for infections
Your child should play and visit with other children. However, ask ahead if the playmate or visitor has been exposed to or has an infection. Find out if the person has a runny nose, cough, diarrhea or rash. Anyone with these symptoms should not visit or play with your child. Do not allow your child to visit with someone who has been exposed to chicken pox. Chicken pox can be spread through the air for one to two days before the spots appear and until all the spots are crusted.
- Dental care
Keep your child's teeth, mouth and gums clean. Brush the teeth after each meal and before bed with toothpaste and a soft toothbrush. Run warm water over the toothbrush to make it softer. Before going to a dentist, check with your doctor or nurse. Checking your child's blood counts before any dental work is important. Your doctor may want to prescribe antibiotics before dental work. If your child has a low white blood cell count or platelet count, the dental work may not be done or your child may need to receive an antibiotic before and after any dental work or cleaning. Also see GREAT information fact sheet: Mouth care
- Skin care
Keep your child's skin clean by washing it with mild soap and water. To prevent sunburn, your child should wear protective clothing such as a hat, long pants and long sleeves. Put sunscreen on exposed skin 30 minutes before going outdoors. Put sunscreen on again according to the package instructions or every two hours and after playing in the water. Remember that sun exposure happens all year, not just during the summer. Keep in mind that limiting the time spent in the sun is the best way to prevent skin damage.
Chemotherapy and radiation can affect the skin. Some treatments (methotrexate, busulfan, thiotepa, and Bactrim) and radiation make the skin more sensitive to sunlight. Any skin that receives radiation will always be sensitive to sunlight. Sunburn can lead to blisters, which can get infected. Skin damage from the sun can lead to skin cancer as well. Also see GREAT information fact sheet: Caring for your skin during radiation therapy
Caring for pets
Many children with cancer have pets. Your child should not clean animal cages (bird cage, turtle or fish aquarium) or empty cat litter boxes. Stool and urine from animals can carry germs that can be spread to your child.
Your child should not receive any live vaccines, such as oral polio or the mumps, measles, rubella vaccine (MMR) while on treatment. Live vaccines can cause illness in children who are at increased risk of infection. Talk to your cancer specialist before your child receives any vaccines.
To be safe, if you have other children who are due for a polio vaccine, those children should receive the inactive (dead) polio vaccine, which is given by shot.
Your child may need to take chemotherapy and other medicines by mouth. Always check to make sure your child is taking the right medicine in the right amount. Ask your doctor or pharmacist if different doses of the medicine have different colors or sizes. Some pills may not be crushed. Check with your doctor or pharmacist before crushing any pills. Here are some tips on helping your child to take medicine by mouth.
- Some medicines can be crushed and put in a small amount of food (applesauce, ice cream, juice or flavored syrup). Make sure to use a small amount of food so your child can swallow all of it.
- Do not hide medicines in your child's favorite foods. Your child may not want to eat these foods in the future.
- Some medicines can be crushed and put in a gel cap for older children who can swallow a capsule.
In general, medicine should be taken one hour before meals or two hours after meals to help the medicine be better absorbed. Steroids (decadron or prednisone) should be taken with food. Steroids can irritate the stomach and cause bleeding if taken on an empty stomach. Ask your doctor or pharmacist for the best time to take each medicine. If your child vomits in less than 30 minutes after taking a medicine, call your doctor.
You may choose to give your child herbal or natural products (vitamins, homeopathic remedies). While some of these products may be safe, some natural products may interfere with how well chemotherapy works. Cancer treatment often temporarily reduces a child's immune system. If supplements contain bacteria or fungi, infection may occur.
Listed below are some reasons why some natural products may not be safe for your child:
- Some of these products may interact with your child's treatment. For example, if your child is taking methotrexate, vitamin C can cause the body to hold onto methotrexate longer, causing more side effects. St. John's Wort taken at the same time as etoposide (VP-16) may reduce the effectiveness of etoposide.
- Lack of studies to show that the product is safe (free of side effects) or effective.
- No dosing guidelines for young children.
- Each product may have different amounts of ingredients.
- Side effects may occur and interfere with treatment.
Talk with your child's doctor or nurse before using any vitamins, home remedies or other natural products.
A healthy diet is an important part of helping your child's body to grow, heal and work well. The body needs protein, carbohydrates, fats, vitamins and minerals. As your child progresses through treatment, his or her appetite will change. Cancer treatment can cause changes in taste. For example, some food, usually proteins, may have a metallic taste. These foods should be avoided until the metal taste goes away.
Steroids may cause your child to overeat and cause a temporary increase in weight. In some cases your health- care team may want to limit further weight gain. You can talk with your doctor or nutritionist if you are worried about your child's weight gain. Together, you can make a plan to help your child get enough to eat but with less fat and fewer calories.
You may notice changes in your child's appetite. Your child may not like a past favorite food. New foods may taste good. Avoid forcing any food on your child. Your child may associate the food with a bad event, even after the cause is gone. The appetite usually returns to normal after a specific phase of treatment is over.
If your child cannot eat enough by mouth to keep the body working well, a special nutrient formula may be given through a tube. The tube may be placed in the nose and go into the stomach (NG tube or nose tube). A tube can also be surgically placed right into the stomach (G-tube or PEG). The formula will give your child fluid, calories, protein, vitamins and minerals. You will be taught how to use the tube at home.
If your child cannot tolerate tube feedings or there is another medical reason to prevent the use of a tube, a different nutrient formula can be given through the IV. This special formula is called total parenteral nutrition (TPN or hyperal). TPN is made of two liquids. One is a yellow liquid that contains protein, carbohydrate, minerals, vitamins and electrolytes. The other is a white liquid that contains fats. TPN can be given at home. However, formula that goes into the stomach is healthier for the body than TPN. In general, TPN will only be used if your child has nausea, vomiting, diarrhea, or another medical problem that prevents the use of a feeding tube.
Also see these GREAT information fact sheets:
- Helping your child/teen cope with body changes
- Nasogastric tube (NG tube)
- TPN (Total Parenteral Nutrition)
- TPN at home
- Tube feeding
A central venous line (CVL or access device) is a soft tube that is inserted into a large vein that leads to the heart. The line can be used to give chemotherapy, blood products, nutrition, fluids, antibiotics and other medicines. The line can also be used to take blood samples for lab work.
There are two types of central venous lines: external and internal.
- An external line is one in which the tube comes outside on the chest. Examples of external lines include a CVL, Broviac or Hickman. Another type of external central line is called a PICC (peripherally inserted central line). This is a central line that is put in through a vein in the arm and then threaded up to a large vein that leads to the heart.
- An internal line is one that stays under the skin. Examples of internal lines include the Port-a-cath, port, Medcomp and Mediport.
With both types of lines, infection can be a problem. If you see any redness, swelling, pus, shaking or chills after flushing, or if your child complains of pain, call your doctor right away. Always wash your hands before touching the line or dressing.
If your child has an external line, never use scissors near the line or the dressing. If you see a break or leak in the line, clamp the line right away. Use a shoelace, rubber band, paper clip or clamp to tie off the line between the break and your child. You must take your child to the hospital right away to have the line fixed.
If you are flushing the line and you feel resistance (fluid is hard to push in), do not force it. Check to make sure the line is not twisted or clamped and try again. If you still feel resistance, call your nurse or doctor.
UC DAVIS MEDICAL CENTER INSTRUCTIONS FOR
Your child needs to continue to learn, grow and interact with friends. Going to school is an important part of your child returning to a normal routine. School also helps children to feel good about themselves and hopeful for the future. Our doctor will talk with you when your child is ready to go back to school. Your child's nurse or child life specialist may be able to go to your child's school to talk with classmates and explain what cancer is and how it is treated. Let your child's teacher know to call you if any child in the class gets a contagious illness like chicken pox.
Many children find it hard to go back to school, especially if they have changes in their body. Hair loss and weight loss or gain are common concerns. Tell your doctor or nurse if your child is worried about going back to school. Your child life specialist, social worker or nurse may be able to help. If your child is having problems doing schoolwork, ask for extra help. Two laws in the United States allow for children with cancer to get a special education plan, which may include extra help. These laws are called the IDEA (Individuals with Disability Act) and Section 504 of the Rehabilitation Act. Talk with someone from your health-care team to see how these laws may apply to your child.
If your child is not able to go to school, talk with your child's teacher. Your doctor can write a letter to the school to explain your child's diagnosis and treatment. Your child's teacher can send schoolwork home and find ways to keep your child in touch with the other children in the class. Your school must also provide home instruction, if needed. A tutor may come to your home to help your child with school work.
Information adapted from the "Family Handbook for Children with Cancer."
CureSearch/Children's Oncology Group. Last updated 5/2007.