On 21st April 2024 I will be running the TCS London Marathon to raise money for Brain Tumour Research UK.   

Many who know us will know that our world fell apart on 31st October 2018 when our beautiful 3 year old son Edward was diagnosed with an aggressive, malignant medulloblastoma brain tumour and obstructive hydrochephalus.  

Edward underwent an emergency 9 hour operation to remove a tumour the size of an orange from the posterior fossa region of his brain, followed by many rounds of intense chemotherapy in rapid succession in an attempt to save his life.   

Edwards chemotherapy treatment protocol, almost all of it unchanged for decades, was brutal on his tiny body and there were many occassions when Edward very nearly didnt make it despite the incredible efforts by the amazing Oncology and Neurosurgery teams at Alder Hey Childrens Hospital.   Infections on top of infections, complications, shunt failures, organ damage and quite simply the impact of the toxic combination of drugs - the list really was endless. 

During his final high dose round of chemotherapy and stem cell transplant he had to be kept in isolation with only his dad or I at his bedside for 6 weeks.  On one of the days while he was in isolation I sat and watched the 2019 London Marathon at his bedside and I promised myself I would one day run the Marathon and give something back to the amazing teams who dedicate their lives to finding a cure to one of the most devastating of cancers.

May 2024 will mark 5 years since Edward finished treatment, mercifully for now (and we pray forever) his is tumour free and there is no evidence of disease.  It feels fitting to honour this incredible milestone we are so privileged to get to by taking on one of the biggest challenges of my life and Brain Tumour Research have entrusted me with a precious place on their marathon team.

If you know me, then you will know I am NOT a runner! To be capable of running the London Marathon needs a complete lifestyle change on my part so work is underway to get fit.  Think Couch to 26.2miles (I'm not even kidding)!!!  I certainly wont be breaking any records but I WILL do it.

Life after treatment is difficult for Edward.  EVERYTHING has had to be re-learnt and there are still so many daily challenges that he battles and although he is doing so so well some days are just incredibly tough for him.  

I cannot convey how proud we are of him and his siblings who carry us through the dark days and how they embrace and manage this 'new normal'.   We are under no illusion about how lucky we are to be in this position and to have Edward here with us, we are literally grateful for every single day we have been gifted.  It is a privilege denied to so many and there are so many families we have met along our journey for whom the outcome is devastating.  It is truly an outrage that so little funding is available to tackle brain tumours.

WE DESPERATELY NEED MORE RESEARCH, KINDER TREATMENTS, BETTER OUTCOMES and MORE SURVIVORS. 

According to the All Party Parliamentary Group on Brain Tumours* following a published report  (Pathway to a Cure - Breaking Down the Barriers) and a speech made by Dame Tessa Jowell in 2018 the UK government committed a total of £40 million of funding for brain tumour research. (Cancer Research UK also pledged £25 million)

However, 5 years later there are still no new treatments and the 5 year survival rate for patients is still a horrifying 12%.  In January of this year, of the £40 million committed by UK Gov just £15m had been awarded with £6 million of that not easily identifiable as relevent to brain tumours.

Brain Tumours kill more children and adults under the age of 40 than any other cancers yet remains grossly underfunded.

BRAIN TUMOURS ARE NOT RARE ! ! 

*  https://www.braintum