What is Cancer
Childhood Cancer

Life During and After Childhood Cancer

Day to day life for a child with cancer can be very difficult both for the child and those caring for them. Parents and the patient can face many challenges and changes. At times parents may feel overwhelmed and unsure about what the future holds. Knowing what to expect and who to get support from can help the family cope throughout treatment.
The physical and emotional side effects of having cancer and its treatment can cause several changes to a child’s ability and desire to eat. Physical side effects that can alter a child’s eating patterns may include:
  • Loss of appetite
  • Feeling or being sick (nausea and vomiting)
  • Bowel changes (diarrhoea or constipation)
  • Weight gain
  • Sore mouth
  • Altered sense of taste
  • Feeling tired all the time and not having the energy to eat
How cancer and its treatment affect a child emotionally may also affect their eating habits. Some children who are upset, frightened or anxious will not want to, or feel able to eat.
 
The medical team, including the dietitian, will work closely with the child and family to ensure maintenance of a good level of nutrition during their treatment.
 
For more information regarding eating well, please refer to:
The information leaflets on the PICS website.
Tips for eating well on Australia’s Cancer Council Victoria website.
Fatigue is one of the most common side effects of cancer treatment. It can be acute (short lasting) or chronic (long lasting).
 
It can be difficult to understand how tired someone having cancer treatment sometimes feels. Whilst a child may not seem to be doing much to make them tired, their body is working hard to fight the cancer and manage the effects of the treatment. Children can become exhausted and have no energy. Fatigue can sometimes carry on long after treatment has finished. Plan appropriate rest periods during the low energy times.
 
Children having radiotherapy to the brain usually want to sleep a lot. Doctors call this somnolence.
 
The following may help to manage fatigue and sleepiness:
  • Minimise the number of visitors at any one time (visitors are great but too many can be exhausting too!).
  • Offer food and drink regularly to keep up energy levels.
  • Allow periods of rest.
  • Encourage low energy activities such as reading, watching TV.
  • Help with activities of daily living (bathing, dressing, and eating) during very low energy times.
  • Avoid outings that require walking long distances/crowds and busy places.
  • Create a calm, comfortable and reassuring environment both at home and in hospital.
Children with cancer usually need to have regular blood tests. This is to check their blood counts (red blood cells, white blood cells and platelets) are staying within normal limits during their treatment. There are three main types of blood cells:
  • Red blood cells - These carry oxygen around the body. If they become too low, known as anaemia, a child can become breathless, very tired and generally unwell.
  • White blood cells - These cells help fight infection in the body. If they become too low, known as neutropaenia, a child will be more susceptible to getting infections. This can be very dangerous when a child is having cancer treatment.
  • Platelets - These cells are important for blood clotting. If they get too low it can cause serious problems with bleeding.
Chemotherapy and radiotherapy can cause changes to all these blood cells which may lead to infections, bleeding and tiredness. Understanding blood counts, and how to prevent complications if they become low, is an important part of caring for a child. 
 
The United States’ Paediatric Integrated Cancer Service (PICS) has developed two very helpful videos for families.
  • Blood counts 
    This information video discusses blood tests; what they are, what they look for, their importance and tips about procedures.
  • Neutropaenia 
    This information video discusses neutropaenia including ‘when to call the hospital’.
Nearly all children diagnosed with cancer lose their hair at some stage from treatment. The amount of hair loss will depend on the type of treatment. Hair loss generally begins two to three weeks after chemotherapy starts. The hair may all come out overnight, or take several weeks. It can range from severe thinning to complete baldness and can include body hair, eyebrows and eyelashes. Hair will always grow back but it may look different.
 
It can be distressing and upsetting to lose hair. Using hair wraps, bandanas and hats can help a child until their hair grows back.
Some chemotherapy drugs can cause mouth sores such as ulcers or infections. Radiotherapy to the head and neck area can also cause mouth problems. The child’s doctor should be notified of changes in the mouth or throat such as:
  • sores
  • ulcers or changes in saliva or problems with eating and swallowing
  • red or white patches in the mouth
  • coated white tongue or
  • bleeding gums
Dental problems should be discussed with a child’s doctor before seeing the dentist. If a child needs any dental work, the dentist needs to be notified that the child is having cancer treatment. 
It is important for both the patient and parents to maintain contact with the child’s school, teachers and school friends whilst having cancer treatment. Continuing to engage a child during treatment in learning may be challenging at times, but it is also an important part of recovery.  Writing a letter or meeting with the Principal or key teachers at the school early on in a child’s illness helps open the lines of communication.  Visiting programs may be available to help educate and inform the child’s school friends and teachers.
 
Stay in close contact with the child’s teachers, use the teachers within the hospital setting and ask the child’s friends to visit and do school work with them. All of this can help keep the child active in their education. Providing regular updates about a child’s progress and possible return to school will be an advantage for everyone.
 
Depending on the child’s age there maybe difficulties upon returning to school.  Issues such as hair loss, weight loss, weight gain, speech problems, changes in appearance due to surgery, loss of concentration and the ability to learn as well as they could before may all be experienced. Fatigue can be an ongoing issue for many cancer patients long after their treatment finishes.
 
For more information regarding how schools and parents can support children receiving treatment for cancer please:
Children may not feel like playing, exercising or being active during cancer treatment. This is normal and usually for a good reason. Having cancer and its treatment is exhausting for most people, including children. They may be feeling sick, have a fever or low blood cell count.
 
Whilst it is important to allow children to rest where possible, it is also important to know when to encourage exercise. Prolonged inactivity can lead to feeling more tired and can lead to other problems such as muscle weakness and low mood.
 
Where possible, and when appropriate, encourage activity. Involvement in the daily routines of family activity such as cutting up vegetables for dinner, folding washing and playing games can help. Walking, bike rides and light exercise can have a positive effect during their treatment. Avoid strenuous exercise and always check with the child’s doctor before doing any new exercise program.  There may be days when all a child wants to do is sleep, other days they will be happy to be quite active.
Children undergoing treatment may have some pain because of the treatment or the cancer itself.
 
Why does cancer cause pain?
Pain happens when nerves detect damage to the body and send a message to the brain, causing the sensation of pain to occur. Pain is useful when it helps you avoid doing something risky, like putting your hand in very hot water. With cancer and other illnesses, it can alert you to the fact that there is a problem, like a tumour growing. Pain can also be experienced due to the effects of treatment. Pain in cancer can happen for different reasons:
  • a tumour can press on a nerve or affect the way an organ works
  • chemotherapy, surgery and radiotherapy can cause pain
  • nerves can ‘carry' pain around the body, so pain can sometimes be felt in a place well away from the thing that is causing it. This is called ‘referred' pain.
How does a child know how to describe how their pain feels?
For very small children watching their facial expressions, movements and the way they cry can indicate levels of pain. Older children will usually be able to tell you about their pain. It is important to find out where the pain is, the type of pain (burning, shooting, cramping, throbbing, stabbing, dull, sharp, constant, aching.) and what makes it worse (movement, eating, breathing) or better (changing position, resting, pain killing medications). Changes in behaviour, such as isolation, mood changes and loss of appetite can indicate a child is in pain.
 
For older children, asking them to rate their pain on a scale of 1 to 10 can be helpful. If their pain is mild - similar to a minor headache that you know will go away soon - they might rate it 1 or 2. The other end of the scale, 9 or 10, is very severe pain – and could be the worst thing they could experience. Always tell the child’s doctor if pain changes suddenly or becomes more severe.
 
Small children may benefit from using drawings with facial expressions to communicate their level of pain. Some children may be afraid to talk about their pain or not know what words to use. Speak at an age-appropriate level to the child to find out about their pain. For example, ‘is it just a little ouch like when you knock your hand on the table or is it a big ouch like when you fall down and cut your knee or much worse than that?”. Children will find it easier to tell you about their pain if you give examples.
 
Baker FACES Pain Rating Scale, which can be used with children as young as 3 years old is also used with some children. It works in a similar way to using a number scale for the older child to rate their pain. Each face has an expression on it and a number associated with that expression. The faces are numbered 0 to 5 with 0 meaning no pain at all and 5 being the worst pain of all. 
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.