Who and what to tell?
One of the first worries you may have when you hear that your child has cancer is what to
say to friends and relatives. Every family is different, but many parents find it most
helpful to be open and frank about the situation, perhaps also giving some of the
information in this booklet. If people close to you and your child know what is going on,
it is easier for them to understand any changes in behaviour and to offer suitable help
and support. Is better treatment available elsewhere?
Children's cancers are rare and the doctors working in the specialist centres that treat
them know what is going on in other centres. That way if any better treatment becomes
available, everyone can change. There is also close contact with workers in America and
Europe so that we keep each other up-to-date with progress.
Are there wonder cures?
From time to time you may see in the newspapers or on television claims for some new
'wonder cure', often from abroad. Occasionally the reports are about genuine advances in
cancer treatment by reputable people, and as a rule cancer centres will know something
about them. More often reports can be misleading, and give false claims for success. If
you have questions about the value of these 'cures', do discuss them with your child's
doctor. Never feel they will be offended by your questions. They will take your questions
seriously and give you honest advice.
If treatment fails?
In spite of all the improvements in the treatment of cancer, some 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 plenty of warning when this is happening so that careful plans
can be made. Sometimes another well-established treatment is available. If this is not the
case, 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 chemotherapy. Often children and their families prefer it if death can happen
at home rather than in hospital. In this case, the child's doctor and the hospital will be
in close communication. Any pain can be controlled by drugs so that death, when it does
occur, is usually a gentle lapse into a coma. Family doctors, community nurses and social
workers will give advice and help with any arrangements that have to be made.
What about scientific research?
Many blood samples and bone marrow or tumour biopsies are needed to find out what is wrong
with your child. Most of these are needed to make the right diagnosis. Spare samples may
be used anonymously for research into childhood cancer. Some samples may be frozen and
stored for future use, when new research techniques become available.
The research may be carried out at the centre where your child is treated. This
type of research takes a long time, so you are unlikely to hear the results. The samples
will, however, be used to increase our knowledge about the causes of childhood cancer and
its treatment. This research will, hopefully, improve the outlook for future patients.
If samples from your child are likely to be used in research, your doctor will
discuss it with you. It will not be done without your agreement.