Do you know a child with a brain tumour?

Information for relatives and friends

Around 500 children are diagnosed with a brain tumour each year, and countless families live with the disease. Understandably, when you hear that a child you know is suffering with this illness, it is a huge shock.

What can you do?

Listen

Parents are overwhelmed with the amount of information they receive. The best thing you can do is listen to them. Be someone they can open up freely to and share their worries and concerns with. Become a good listener.

Research

All brain tumours are unique, but if you know the diagnosis, read up on it. You will find it easier to listen to and support parents if you have an idea of what they may be going through. Our website has a list of tumour types and treatment options. You may also find our patient guides useful to read, as they give a detailed overview of a patient’s treatment pathway. Be wary of oversharing information that you have retrieved with parents, because they will have received a lot of resources from the hospital. You can always signpost them.

Reach out to family and friends

Parents usually have close family or friends providing additional support to the family. Parents will be very busy with their poorly child, so you could also reach out to close family and see if they need help. Let parents know that you are there for them, and offer your assistance to families, but respect their privacy, as parents are also coming to terms with the diagnosis.

If you have any events such as birthday parties or dinners, invite the family to come so that they still feel involved even though they may not come. Treatments for brain tumours can extend to a year or more, so be realistic about how much support you can offer, and be prepared for the long term.

If you have young children

You may have young children who are at an understanding age and know the poorly child. It is important to talk to them. Children have the wildest imaginations; their own ideas may be worse than what is happening. Some children may worry that they will also get cancer. Reassure children, and tell them it is not contagious. We understand explaining a brain tumour diagnosis to children may be difficult. Therefore, we have developed an illustrated book called The Snaggle Tooth Splat, which may help young children understand what a brain tumour is. For a free copy of the book, please send a request to hello@brainstrust.org.uk.