Each child and young person is unique and not everything you read here will be relevant to your situation. When a child or young person is diagnosed with cancer, they may face intense emotion and fear from the people and community that surrounds them. Children and young people are often far less fragile than we think and open and honest communication is very important.
It is a very natural reaction for adults to want to spare children any pain. This can lead to the belief that hiding information and just letting things take their course is the best motto! But it is usually best to be open and honest with them. Telling them about their cancer and its treatment in a way that is appropriate to their age can be very helpful. If you don’t they will usually pick up that things are not quite right anyway. This can make them more anxious than they need to be. Uncertainty is usually very difficult for anyone to deal with, no matter how old they are.
Although many childhood cancers are now curable, the diagnosis can still be devastating for all concerned. Treatment can last for many months meaning the child/young person is in hospital for long periods of time away from their familiar environments of home and school. During their time in hospital they are often surrounded by strangers and separated from the people who mean the most to them (immediate family and close friends).
Most children’s cancer wards will have teachers to help keep the children up to date with their school work. However, the side effects from the cancer and its treatment often leave children feeling very tired. Other common side effects include feeling and being sick, fatigue, depression, weakness and reduced concentration. They may also have learning difficulties or decreased cognitive skills as a result of their cancer or treatment. Weight changes, hair loss, tattoo marks for radiotherapy treatment and problems with coordination are other side effects that can also affect some children. Although most of these side effects are temporary they can still have a big effect on the child and their ability to carry out day to day activities. They may not feel like doing anything a lot of the time except sleep or be close to their Mum and Dad.
Any of these physical changes can result in fears of (or actual) teasing and rejection by peers and can create a reluctance to resume friendships or to return to school. The child or young person may also become concerned about missing school. They might also worry how friends are going to treat them and how they will catch up on all their schoolwork. It can become overwhelming. Without the right care and guidance it may be very damaging to a child’s self esteem long term.
Young people with cancer also must face many stressful emotional challenges. It is only natural that most children will worry about their cancer coming back (relapse) and what this may mean as far as more time in hospital and further treatment. Emotional energy usually spent mastering basic developmental skills are now used to cope with illness. (For example, teenagers have difficulty attaining the independence so important to their development when the disease forces them to be dependent on parents and caregivers.) In addition, children and young people with cancer must learn to deal with others who treat them differently because of their disease; they may subsequently seem to withdraw, regress or become aggressive.
It is important to try and keep the child’s life as normal as possible. Going to school, or staying at grandparents maybe part of a child/young person’s routine. If possible, it is important to maintain this routine for both you and your child.
The health professionals involved in the child/young persons care, as well as the school will have access to a range of good resources to assist the patient and those around them cope with the diagnosis and treatment of cancer. Making sure support is available where necessary is a key part of the child’s recovery.
Effects on those close to the child / young person
Parents
If parents are angry, sad, hostile or overly anxious, it is important to understand that these feelings are not necessarily directed at you. For most parents being told that their child has cancer is one of the most devastating events that will ever happen to them. They not only have to deal with their own sadness but they may also have to face many other emotional problems. Siblings can become very jealous of the attention lavished upon an ill child. It is not uncommon for the parent’s relationship to suffer due to the strains associated with the child’s illness. . The parents are placed under tremendous stress and are often in turmoil. It is important that they are given the support, time and space to deal with their emotions.
Continued sharing of information between parents and the school is extremely important. Most parents are willing to supply information when they realise the teacher shares their concerns.
Siblings
Being the brother/sister of someone with cancer can be really hard. When children are diagnosed with cancer, the siblings may need to stay with friends or relatives as their mother and/or father may be living with the sick child in hospital. The siblings are often kept out of the information pathway so as not to worry them unduly. However siblings will worry enormously about their brother/sister. They may feel guilty and wonder if they did something or said something to cause their brother/sister to get cancer. They may feel sad for quite a long time but this period of sadness usually goes away when the hospital stay is over and everything at home is back to normal.
Siblings may also become jealous and feel left out. Being in hospital, missing school, and spending lots of time with Mum and/or Dad can look like a pretty good deal! They can even think that people don’t love them as much as the child with cancer. Other feelings could include anger – “how come bad things happen to my family?”; worry and fear about what is going on in the hospital; worrying that they or other family members might also get cancer; missing your parents and wanting their comfort. Reassurance, accurate information and comfort from trusted adults at this time are essential.
Grandparents
A grandparent may be involved with taking care of things on the home front. This can mean that they are only receiving medical information about the sick child second hand. They often worry about the effect of the grandchild’s illness on their son or daughter. They may feel that life is very unfair putting such a burden on their child and young family. The grandparents often put their own lives on hold so they can assist in this time of crisis. They may be tearful and angry about what is happening. It is important that their needs are not forgotten. Where possible, providing them with accurate information and including them in on the child’s care, can help to alleviate some of their worries.
“In their shoes” – stories from children / young people with the condition
When I was told that I had cancer, I didn’t know what it meant. It’s not too bad but I don’t like the treatments. The best thing about it is getting to tease the nurses and doctors. Breanna, 6 yrs old
When I was told I had cancer I was very scared because I heard from TV that cancer was a serious disease. But there was nothing I could do about it but wait to get it over with. Jack, 9 years old
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