We know that once diagnosed with a brain tumour, children feel scared, and their carers isolated. We also know, that the diagnosis can have a greater impact on the carerís life. You donít have to go through this alone.
Little things can help ease you through. Below are some resources that you might find helpful. All are free to brain tumour patients and their loved ones.
The brainstrust brain box - the ‘must have’ support toolkit for people with a new brain tumour diagnosis and their carers. We appreciate how difficult things can be once a little person you love is diagnosed with a brain tumour; the ‘4am moments', the travelling to and from appointments, the stream of questions that pop into your head, trying to remember the jobs of all the people that you'll meet on your journey, and knowing who to turn to and when. Juggling acts that you don’t need when you just want to focus your energy on making them feel better, and return to some normality. So to assist you, we’ve launched this unique invaluable aid to keeping on top of things.
The brainstrust tool-box shaped ‘brain box’ contains a number of essential things to support and provide information for brain tumour patients and their carers, including:
brainstrust stress brain - to release stress by squeezing , or throwing at things!
Sunny highlighter - to help with learning
Pack of brainstrust Christmas cards
Tea bags – absorb all the contents of your brain box with a well deserved cuppa
‘The Snaggle Tooth Splat’, written to help parent carers or patients broach a brain
tumour diagnosis with their children. It is a beautifully illustrated book and was featured in the BMA newsletter and Oncology News magazine.
brainstrust’s mascot, Ellie - a crocheted red elephant . You can also buy Ellie the elephant from our shop - click here.
The above is the standard, but contents may sometimes change. Other literature and useful bits and pieces are often included as well. Please note that everything in the brain box can also be obtained separately if you like. Just let us know.
If you are a brain tumour patient, or if you are looking after someone who has a brain tumour, the box won’t cost you a penny. We just need to know a little bit more information about you before we send you your box. Please complete to the short form below to request your brain box
Meet Ups for children and their families
We know you have a really difficult job. Looking after a child with a brain tumour is like nothing else. We know how isolating it can feel, and tiresome it gets holding everything together for the family. These Meet Ups provide a fun opportunity for you to meet other children, parents and carers whose lives have been similarly touched by a brain tumour. You can offer mutual support, share experiences and ideas, in a relaxed, non-clinical environment.
“Thank you so much for a lovely afternoon. It's very rare to sit amongst other families who can relate to the challenges that we are facing with our children. We found it really beneficial … It helped him [eldest son] to feel included and involved which is sometimes very difficult when his brother has had and continues to have a lot of attention.” (Meet Up for families, 2013, London)
facebook support group – Whether you have a specific question or want help to create a long term programme of care, you'll quickly get expert advice. Not just from us, but from those in the know - and that's you! The page is confidential ďI found this page and am so glad I did. No one understands like you all doĒ (facebook support group member, 2013)
Little brainstrust facebook support group
– Specifically for those caring for children with a brain tumour, the little brainstrust facebook support group offers more tailored support where topics such as paediatric treatment, schools and transition can be discussed.
Created for brain tumour patients and carers, the brain tumour hub is an authoritative, easy to navigate database of brain tumour support resources and UK based brain tumour clinical trials.
It is intuitive, easy to use, developed with clinicians, patients and carers, and constantly evolving with regular updates. New sections will include signposting to financial support for children with a brain tumour and their families, and respite care.
To find out what support is available, you can use the financial support area of brainstrust’s brain tumour hub, here.
To help with the added costs you're facing, we are sometimes able to offer small grants to families.
We know how alone and isolated you can feel when you have a brain tumour, or a loved one is diagnosed with one. Sometimes you just really want to talk to someone who truly understands. Someone who has experienced what you’re facing. Whether that’s a similar treatment, similar tumour or prognosis, experience of the same hospital; we can put you in touch so you can offer mutual support to one another.
Following on from the first ever day for brain tumour carers in early 2013, future carer days will include paediatric focused workshops. “Fantastic day! Excellently organized, relevant and informed subjects and discussions. I have taken a lot away from today – thank you!” (Carer, Carer Day, February 2013)
Resources to reduce anxiety and to inform
Dr Dave and his Amazing Radiotherapy Machine
Two doctors from Peter Mac in Australia came up with special ways of communicating what radiation therapy is about to children. To further enhance the information offered to children having radiation therapy, a new comic book style information book has been developed. Acclaimed children’s author and illustrator team Danny Katz and Mitch Vane have produced “Dr. Dave and his Amazing Radiotherapy Machine”. The book is aimed at primary school aged children. An online version is available here
Snaggle Tooth Splat
A beautifully illustrated book to help parent and guardian carers or patients broach a brain tumour diagnosis with children. It was featured in the BMA newsletter and Oncology News magazine, and is suitable for young children, approximately 4-8 years of age.
What’s Up with Rachel?
Medikidz use their expert knowledge and special brand of education and entertainment to explain to Rachel the roles of neurons, glial cells, and to see exactly how brain tumours are caused when these cells start behaving badly. The comic covers MRI and CT scans to help with diagnosis and how the various brain tumour treatments like chemotherapy and radiotherapy can work to help her get better. The target age range is 8-15 year olds.
Open 24 hours a day, 7 days a week, the brainstrust support line offers brain tumour patients and carers support, information and pragmatic advice over the phone and by email.
experience based brain tumour support - talk to patients and carers
qualified coaches on hand
Need help now? To use this resource, email or call 01983 292405
Coaching for children and coaching workshops for parents and carers
“When we are no longer to able to change a situation we are challenged to change ourselves”
Elemental to our work is high performance coaching. This sets us apart. Our coaching relationship with you will enable you to face challenges, so that you learn how to develop resilience and utilise resources to their full potential in your battle against your or your loved one’s brain tumour.
We help children through coaching, and offer coaching workshops for their parents and carers. The workshops will to help you face your own challenges, and enable you to look after your little person better. For more information, email
We promise that your experience with us will be:
Proactive, not reactive
About growing as a person
Truthful – you’ll have real conversations
Personal, face to face
Shared – at brainstrust we have direct experience of living with a brain tumour and cancer
Focused on living
Collaborative so that everyone benefits.
Date published: 17-05-2009 Last edited: 6-12-2012 Due for review 31-01-2014
Read the stories of some families we've worked with, and find out about the uphill battles they faced and how brainstrust helped. Read patient stories
Your donation to brainstrust will help us support more children battling a brain tumour and their families.