Some children unfortunately do not respond to treatment, or their cancer returns soon after stopping treatment. This means that there may come a time when you are told the devastating news that your child isn’t going to get better and that a cure is no longer possible.

Losing a child is one of the hardest things anyone will ever have to deal with. It is impossible to say how you will react, and there is no right or wrong way. The emotions will be powerful and all-consuming and you may have lots of questions and anxieties as you try to adjust to the news. Don’t be afraid to ask these questions of the team caring for your child – everyone involved in your child’s care will talk with you honestly and with respect for your fears, wishes and feelings.

At this point, the focus of your child’s care will be to manage their symptoms to ensure they are as comfortable as possible. If they haven’t already, your child’s doctor is now likely to talk to you about a referral to a palliative care team, often through the local children’s hospice. In addition to controlling symptoms, the palliative care team can help you with spiritual or psychological concerns, or decisions about end of life care.

The hospice may also be able to accommodate family stays to allow quality time for the family as the end of life draws closer. For some families, this is what they want. For others, they are more comfortable at home or in the hospital. What is right for one family and child may be different for another.

You don’t need to cope with this alone. If you need support, or if you just need to talk, speak to someone in the team caring for your child. Please read about more support available to you in our Support section.

For more information about facing the death of a child from cancer, read the article from the Children’s Cancer and Leukaemia Group.

Words in bold are explained in a glossary.


Prognosis and long-term outlook


Advances in chordoma research