Communications Officer, Stephanie Layton, explores the progress of some of the exciting research Dr Darren Hargrave is currently working on.
The woman sat opposite me carefully hands me a photo of her little boy grinning on the beach, taken during their family holiday to Devon.
She describes the sound of his laughter as he chases seagulls across the sand, the chocolate ice cream proudly worn around his mouth and the sheer joy on his face as he goes crabbing with his big brother for the first time.
Then she tells me how just days later, he died from a brain tumour, aged 23 months.
She describes how it felt to put her baby in his pyjamas in hospital, read him one last bedtime story and place his tiny arms around her as she sang Twinkle Twinkle Little Star to him until he fell asleep.
The injustice and heartbreak of her story is brutal and incredibly cruel.
And yet, sadly, it is not uncommon.
Brain tumours are the biggest cancer killer of children and adults under 40 in the UK, and while survival has doubled across all cancers, this is not the case from brain tumours. In fact some children are being put on the same drugs people were offered 40 years ago.
It is astonishing, saddening and frankly enraging.
It is why The Brain Tumour Charity invests in the pioneering projects, prestigious scientists and the world-class scientific and clinical research that we do.
It's not that we simply want to achieve better outcomes for these families – we need to, and quickly.
No parent or family should have to go through what that mum did, and every day we aspire to achieve a world where they won't, which is why, when I am given the opportunity to discuss some of our research and the progress we are making in this field with esteemed expert, Dr Darren Hargrave, I am both eager and thrilled.
To say this is a privilege is an understatement. Dr Darren Hargrave is a consultant paediatric neuro-oncologist at Great Ormond Street Hospital and the Chief Investigator of several completed, on-going and planned clinical trials in paediatric cancer. He is involved with some of the most pioneering and patient-focused research in the world, including projects such as INSTINCT, BIOMEDE and LOGGIC, and has dedicated his life to improving quality of life, care and survival rates amongst children with brain tumours.
Hard-working and exceptionally committed, how he finds even a few minutes to spare in his day astonishes me.
Darren explains what motivates him to work all the hours that he does and as hard as he does.
He says: “Children with brain tumours do not have the outcomes that children with other types of cancer have and they desperately need better and kinder treatments. I want my research to improve survival rates for these children but also I want it to improve their quality of life. Irrespective of how tough things are for these children, they bravely just get on with life and I really want to reduce their burden. That's why being involved in some of the most cutting-edge research programmes and trials is so important to me."
He explains that it will test three drugs in children with DIPG over a five-year period and is particularly innovative because it has been specifically designed to be adaptive, which means that if one drug is not working it can be dropped in favour of new emerging drugs.
He says: “The current standard of treatment for DIPG is not acceptable, which is why this research is so vital. Up until now there have been no significant advances in the treatment of DIPG and I am determined to see the survival rates increase." And, thanks to Darren and the team's dedication, they are already making excellent progress.
Darren says: “Since the trial opened earlier this year, we have already opened six centres and recruited 10 patients which is a phenomenal output in a short time.
“This is the largest DIPG study ever carried out. Every patient involved will have a biopsy and their tumour analysed and this means that for the first time ever, we'll not only be able to see which medications patients respond to best, but also why. This information could be truly transformative in ensuring that every child is receiving the right treatment and the best possible care for them."
As Darren talks, he speaks so fervently, that it is impossible to not absorb his passion and enthusiasm. I can't just hear his excitement about the breakthroughs on the horizon, I can feel it, and that combined with his renowned expertise on the topic, leaves me captivated and filled with confidence. Next we discuss INSTINCT.
INSTINCT is a ground-breaking research programme, co-funded by grants from The Brain Tumour Charity, Great Ormond Street Hospital Children's Charity and Children with Cancer UK, bringing together research teams from the University College London Institute of Child Health (ICH), Newcastle University and the Institute of Cancer Research (ICR) to explore new ways to treat some of the deadliest brain tumours affecting children. The teams aim to save lives by developing tailored and targeted treatments.
Darren explains: “We are now two and a half years into this study and are currently in the process of developing new models and cell lines, and starting pre-clinical research and drug screenings. The aim of this research programme is to greatly enhance our understanding of these aggressive tumours so that this new understanding can be rapidly translated into new and effective treatments. So far the research is looking really promising and we are exactly where we'd hoped we'd be with it."
Finally we talk about LOGGIC. LOGGIC is the clinical trial associated with The Everest Centre, investigating targeted treatments for children with low grade gliomas. A key innovation of this trial is that it is not only looking at how long a child survives the treatment, but how well.
Darren explains: “Children diagnosed with a low grade glioma can go through multiple rounds of treatment – including surgery, chemotherapy and radiotherapy – for many years of their young lives, that often has profound long-term health effects.
“We plan, as part of this trial, to compare new targeted treatments, with potentially less severe side-effects, against current chemotherapy. The results of this could mean that for the first time ever in paediatric oncology, targeted treatments can be used in daily practice, creating a significant step change and transformation in the treatment of these brain tumours."
As our call comes to an end, I ask Darren for his opinion on how long he thinks it will be before we witness such transformations.
He explains that over the past few years there has been an explosion in the understanding of what leads to paediatric brain tumours.
“In fact," he says. “I passionately believe that the research being carried out now, is just about to translate into better outcomes for these children."
And the confidence and conviction in his tone, as well as his experience and expertise, make me trust him implicitly. Change is not only on the horizon – it is imminent.
As I hang up the phone, I feel inspired, excited and incredibly hopeful.
Our mission to defeat brain tumours might be ambitious, but for thousands of families, change could just be around the corner.
No parent should ever have to read their child one last bedtime story or give them one last kiss, and I wonder if soon I might be able to tell that mother, that another family won't ever have to go through what she has.
Improving treatments and survival rates amongst children with brain tumours is not just something we need to do, but must.
After speaking to Darren Hargrave, I believe that we are closer to achieving this than we think.
With great thanks to Dr Darren Hargrave for his time and continued support with The Charity's pioneering research.