How we're thinking differently about treating children's brain tumours

Since the Children’s Brain Tumour Research Centre (CBTRC) opened at the University of Nottingham in 1997, generous supporters like you have raised over £6m and, combined with more than £10m in research grant income, it is helping improve the understanding, treatment and outcomes of children and young adults who develop brain tumours.

Thanks to the support of donors like you the 40 core staff, including both University and NHS researchers, dedicate their work to helping children across the country who are diagnosed with brain tumours. One such case is the remarkable story of Poppy McGill from Nottingham.


Poppy McGill

Poppy's story

It might sound strange following 15 months of traumatic, potentially life-threatening treatment but Steve McGill is quite looking forward to his five year-old daughter Poppy being out from under his feet.

“She’s just like any other pain in the backside five year-old! But we’ve not really been able to get out of the house for over a year so to have a sense of normality is a strange feeling but a great feeling.”

If you are unfamiliar with Poppy’s story her participation in a clinical trial to help treat a brain tumour captured the hearts of the country in the BBC’s ‘Hospital’ documentary last year.

Clinical trials are giving children like Poppy the chance of a better life, and she was the first child in Nottingham given the opportunity to be enrolled on the “PNET5” trial through the CBTRC - a Europe-wide trial aimed at improving the outcomes of Medulloblastoma.


The clinical trial which transformed Poppy's future

Explaining the processes involved in treating brain tumours can be a little complicated, but in Steve’s words this trial helped Poppy by her “having a dose of chemotherapy at a specific time prior to radiotherapy."

“The delivery of the chemo would prompt cells to spring into life at just the moment the radiotherapy would come along to kill them. And so it produces a stronger effect.”

Because the trial featured more intensive chemotherapy it then increases Poppy’s chances of making a full recovery, which so far appears to be on track. 

The trial itself involved a number of cycles of chemotherapy and radiotherapy over several months which ended last summer, followed by less intensive chemotherapy to ensure the cancer does not return.

An unwanted Christmas present

It was in late 2017 when her parents had first noticed her balance was amiss, then following a Christmas trip to Lapland her symptoms worsened before her parents brought her into hospital on their return. Poppy was diagnosed with a Medulloblastoma - a malignant tumour in the floor of the skull – the size of a golf ball, in January 2018. 

“You just get tunnel vision and the only thing I can remember is sitting with the nurse as she told us the news. She went into surgery the same night to drain spinal fluid, reducing the pressure on her skull and she became much better.

“The doctor told us straight away it would be a long journey for Poppy, but it was doable. Within seven days of being admitted to hospital she underwent surgery to remove the tumour and then the trial followed.”

The emotional toll

The entire process proved to be a huge challenge for the family, but it’s one, thanks to the support of friends, extended family and the tireless efforts of hospital staff that is now likely to have a happy ending.

“Emotionally there's no way you can describe the situation really. In the early days you're all a mess but you focus on whatever the doctors tell you to do and make decisions as best you can. It felt like we had seven million medicines to administer at home and we became quite anal about recording the detail of the treatment really. 

“It's been a life experience, it's a bit bizarre to say, but there were times I think we thrived on the challenge of overcoming the adversity. You see some people having nothing but difficulties so we know we're lucky there's not been many bumps in the road.”

Poppy's ordeal also inspired Steve and other members of the McGill family to fundraise for the CBTRC over the course of the last 12 months. Just last Sunday Poppy's uncle Martin Drury completed the London Marathon, raising over £3,000 alone.

"We are eternally and immensely grateful for the hard work and dedication put in by all the surgeons, doctors, nurses and staff across the entire NHS.

"Without them we'd be in a different place entirely. Central to our situation as been the opportunity to take part in a clinical trial, organised in part by the CBTRC. Not without its own factors of fear, it was important to us that the work like this gives the other children, future Poppy's if you will, a chance at better and more successful treatment.

"If alongside the CBTRC we've been a tiny stepping stone towards something better then it can only be wonderful thing for all concerned."

Steve McGill

How the CBTRC is striving to find the next breakthrough

Richard Grundy is Professor of Paediatric Neuro-oncology and Cancer Biology, based at the CBTRC and led the clinical trial which Poppy underwent.

"In her case the aim was to accentuate the efficacy of the radiotherapy by giving her a complimentary drug. Poppy was the very first child to undertake the trial. It was novel and intricate, taking a lot of organisation and logistics, of which the family were tremendously supportive."

Looking ahead the centre is now leading a European consortium which is attempting to replicate the trial with another type of brain tumour known as an Ependymoma.

"We're now curing maybe 70% of children with Medulloblastoma, but still at a cost, which we want to reduce. With Ependymoma, we're probably curing half of the children with the disease at best and we really need to improve that." 

Professor Richard Grundy

Thanks to the continued support of donors the centre will lead the way in this vital research and help more children fighting brain tumours recover to live as full a life as possible.

More than a third of children with brain tumours die despite modern treatment. The Children's Brain Tumour Research Centre is developing new and better methods of treating childhood brain cancer, and improving the quality of life of children who are cured. Your donations make all the difference.