Every day, a family somewhere in the UK will receive the terrifying news that their child has a brain tumour.
“Our lives just stopped” says Llian, whose son Blake was diagnosed with medulloblastoma in September 2013 when he was just three years old. We were told Blake only had a few weeks to live.”
Diagnosis can be difficult
It took some time for Blake to be diagnosed, with numerous visits to the GP before his parents did some research and demanded the MRI scan that was to confirm their worst fears. This is a common story. Most GPs will never before have come across a child with a brain tumour and the symptoms can be similar to many more common childhood illnesses.
To help combat this, the HeadSmart campaign was launched to reduce the time it takes to diagnose children and young people with brain tumours in the UK. The campaign has achieved success in reducing the time to diagnosis by educating healthcare professionals and the public about the symptoms of brain tumours in children and young people. This is important because a prolonged time to diagnosis can be associated with worse outcomes for young patients.
Read more: HeadSmart
Treatment is almost unbearable
A brain tumour diagnosis marks the beginning of a long and difficult journey for young patients and their families.
Blake immediately underwent emergency surgical de-bulking of his tumour, which left him paralysed from the chest down. His family then had to consent to high dose chemotherapy just 72 hours after the surgery, “We were told this had never been done before and that it may kill him,” said Llian. “We consented.”
Blake fought back, enduring further chemotherapy and months in intensive care. The family were warned that there was a high chance that Blake would not make it through the radiotherapy that was part of the treatment protocol but again he battled through. “He survived and it didn’t even faze him,” says Llian.
And the outcomes are not good enough
Blake has been through so much in his short life – brain surgery, high dose chemotherapy, radiotherapy. He has spent months in intensive care on breathing machines and has had to cope with enormous changes, including being in a wheelchair. Although his disease is currently stable, his particular type of tumour (a group 3 medulloblastoma) does not have a good outlook and his oncologists expect the tumour to return aggressively.
Whilst Llian is optimistic, the fact remains that brain tumours kill more children than any other cancer, claiming around 100 young lives every year in the UK. Some tumours are considered incurable from the outset and families will face the loss of their child within months.
For those who are ‘cured’, life after treatment can be very different. Up to two thirds of survivors are left moderately to severely disabled as a result of the tumour and the aggressive treatments used. Those caring for the child must strike a fine balance between saving a life and preserving the quality of that life.
But we are working towards a brighter future
Despite the devastating impact of childhood brain tumours, research has not been well-funded.
Brain tumours account for a quarter of all childhood cancers and a third of childhood cancer deaths. Yet they receive only around 6% of childhood cancer research funding.
We’re working hard to increase momentum in childhood brain tumour research. We currently have funds of £3.9 million invested in brain tumour research projects, more than a quarter of our total research funds. Each of these projects has been through our competitive application process, including rigorous peer review, to make sure that they represent the very best hope of progress.
Just last month we hosted a research workshop focused on the very specific problem of delivery of drugs to the brain. Overcoming the protective blood-brain barrier is one of the greatest obstacles to progress in the effective treatment of brain tumours in both children and adults. In the first workshop of its kind worldwide, we brought together many of the world’s leading experts to share experience and develop new collaborations. It was exciting to hear first-hand that important progress is being made. We will be making a further round of grants later this year to further progress research in this field.
We’re determined to improve the outlook for children like Blake. With your support, we can give them a better chance.
Read more: Blake’s story | Our brain tumour workshop (blog) | Our brain tumour initiative | £3 million for Brain tumour research
Research Development Manager