Children who have been in hospital are often understandably difficult and demanding when they go home. Younger children may behave in a more childish way (regress) whereas older children may be aggressive or jealous of their brothers and sisters. Maintaining discipline and having their friends over to visit can help children get back into normal life.

If treatment fails

In spite of all the improvements in the treatment of cancer, sometimes treatment doesn't work. In this situation another well-established treatment may be available. However sometimes children still die from the disease. Occasionally this is the result of a severe infection caught during treatment, but usually it is because the disease comes back and no longer responds to treatment. There is usually some warning when this is happening so that careful plans can be made. There is a lot of support available for you in this situation.

You may be asked if you would like your child to be part of a study trying out a new drug. This may or may not help your child, but could be of benefit to future children. This is entirely your choice, and you may feel that the right decision for your child is to stop all treatment.

Often children and their families prefer it if death can happen at home or in a hospice rather than in hospital. In this case, the child’s doctor and the hospital staff will be in close communication. Any pain or other symptoms can usually be controlled by drugs so that death, when it does occur, is usually a gentle lapse into a coma.

The death of a child is one of the most devastating experiences anyone ever has to face. Family doctors, community nurses and social workers will give advice and help with any arrangements that have to be made.

Cancerbackup or the UKCCSG can send you information about preparing for, and coping with, the death of a child, with details of all the support available.