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.

While it is often a relief to get to the end of treatment, you may find that you feel more anxious and worried now that you and your child are not attending the hospital so regularly. This is perfectly normal – all of a sudden you don’t have the reassurance of seeing the doctors and other staff. Also once treatment ends you may be worried that symptoms will return.

Remember the hospital staff are still there, and they will understand your concerns. It is important to contact them if you have any worries about your child’s health.

The CCLG has two booklets about the end of treatment, one for parents and one for teenagers.  

If the cancer comes back

In spite of all the improvements in the treatment of cancer, sometimes treatment doesn’t work. In this case 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 trial trying out a new drug. This may or may not help your child, but could benefit 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 they can spend their last days or weeks 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 medicines so that death, when it does happen, is usually following 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.

Our cancer support service or the CCLG can send you information about preparing for, and coping with, the death of a child, with details of all the support available.