Care Guide: Home Care Recommendations

Our staff has created recommendations for home care of children with pediatric cancer.

Activity & Rest

• Energy levels may increase or decrease due to treatment
• Encourage daily routines, such as keeping the same bedtime
• Normal routines help with coping

School

• It is important for children who attend school to have the opportunity to develop like other kids
• Inform school workers and classmates of the school-aged child’s needs
• Information and education can be given to school personnel before the child returns to school
• The transition back to school is easier when school personnel have received accurate information before the child’s return
• Talk to your outpatient nurse or social worker if you need assistance in transitioning back to school

Chicken Pox (Varicella) Exposure

Chicken Pox is contagious. It can be caught by spending one hour or more in the same room with someone who either has chicken pox or who develops chicken pox during the next 24 to 48 hours.

• Chicken pox is contagious 24 to 48 hours before the first spot appears and it remains contagious until all the sores have scabs on them (or even longer in some cases)
• Chicken pox rash usually develops 7 to 21 days after exposure
• The rash is blistered, and red itchy bumps appear
• Ask the school to notify you and your health care team immediately if anyone around the patient has chicken pox or develops chicken pox within 24 to 48 hours of being with the patient
• Notify the health care team of all exposures as soon as possible, even if it has been more than 48 hours since the exposure and even if the patient has had a chicken pox (varicella) vaccine

Please call the outpatient nurse before bringing the patient to the hospital to prevent exposure to others.

Taking a Temperature

• Fever is an important sign of infection
• Take the patient’s temperature if you notice they are tired, restless, warm to touch, chilled, shaking or is just not themselves
• Only take temperature orally (under the tongue with mouth closed) for 3 to 5 minutes or axillary (under the arm) for 5 to 7 minutes
• Use the axillary method for infants, toddlers and children under four years of age if they have a hard time with oral temperatures
• Never take the patient’s temperature rectally (in the bottom), because this increases the risk of infection and bleeding
• An accurate thermometer can be obtained at any drug store
• Keep thermometer clean with soap and water and store in a dry place
• If you cannot obtain a thermometer, tell your nurse

Anytime during cancer treatment, contact the treatment team immediately if the patient has a temperature greater than or equal to 101°F once, or greater than or equal to 100.5°F twice (taken at least one hour apart) in 24 hours. Often, the team will have you see a doctor for blood tests and possible admission to the hospital for intravenous (IV) antibiotics.

Immunizations

• In general, immunizations (vaccines) are not given to cancer patients
• Discuss the need for immunizations with your nurse or doctor
• Chemotherapy lowers the ability of the immune system to respond to immunizations
• Some vaccines can cause disease in immunocompromised patients
• Call your oncologist if you have questions

Exposure to Sun

• Radiation and chemotherapy make the skin sensitive and more prone to burning
• Wear sunscreen (SPF 30 or greater) that is UVA/UVB, PABA-free and hypo-allergenic
• Reapply sunscreen every two hours and when getting out of the water
• Limit exposure to the sun during therapy
• Wear protective clothing, such as hats and scarves

Diet & Nutrition

• Adequate nutrition is important during treatment
• Certain cancer treatments may cause decreased appetite
• Maintain a well-balanced diet if possible
• Eating any food is better than eating no food, so you may need to cater to the patient’s tastes
• Eating a normal diet may be hard when getting cancer therapy
• Chemotherapy and radiation can cause temporary effects like mouth sores, changes in taste, decreased appetite, nausea and vomiting
• Weight and height are measured with each visit
• If patients need help with nutrition, a nutritionist will see them
• If the patient is undernourished, oral supplements, IV nutrition or nasogastric tube feedings may be used
• If recommended by a doctor, a nasogastric tube (NG tube) may be placed to feed the patient in the short-term

Giving Medications

• It is important to give medications as directed by your health care team
• Your nurses and doctors will notify you of food or drug interactions with the patient’s oral medications
• Giving medications by mouth may be difficult because some medications have a bad taste and can cause nausea
• If the patient throws up less than 30 minutes after taking medicines, most of them will need to be repeated but do not repeat a chemotherapy medicine without first talking to your health care team
• Do not give any over-the-counter medicines (those that can be purchased without a prescription) without first asking your health care team
• Do not give aspirin or ibuprofen unless directed by your healthcare team, as these may cause bruising and bleeding (aspirin/acetylsalicylic acid and ibuprofen are packaged under different names and are found in several over-the-counter medications)
• Aspirin-free medicines such as Tylenol® (also called acetaminophen) may be used for pain, fever or discomfort only if the doctor approves its use

Children Who Cannot Swallow Pills

• Liquid medicines or crushed pills can be added to small amounts of food, juice, chocolate syrup, ice cream or whipped cream to improve flavor
• Do not add medicines to entire bottles of juice, milk or large amounts of food because the patient may not finish the entire amount and they will not get all the medicine
• Try not to use the patient’s favorite food for mixing with medications because they may start to refuse that food
• The hospital's pharmacy and certain outside pharmacies are now starting to flavor liquid oral medicines to make them taste better
• Establish medication routines and set limits

Family Relationships

• The diagnosis of cancer will cause changes in your family
• The entire family needs time to adjust
• Caregivers may feel anxiety when a child with cancer goes to school or bed
• Children and adolescents with cancer may regress and act younger than they are as a response to the stress of the illness
• Children and adolescents with cancer may also test limits or rules or become insecure and difficult to care for
• Children and adolescents with cancer need to follow the same rules and responsibilities, within reason, as they did before diagnosis
• Resist the temptation to overprotect or overindulge the patient
• Siblings and other family members need to be included in the care of the patient with cancer
• Remain open with siblings and explain to them what is happening
• Talk with siblings’ teachers to have them watch for any changes or problems that may result; schoolwork and relationships with peers may be affected
• When you are ready, allow friends, neighbors and families to help

Resources & Support

Nurses, chaplains, child life specialists, social workers and art therapists are available to help, listen and explain things to siblings, as well as to the patient and family.