Marathon Swim

Thank you to all the boys of Park House at Tonbridge School who raised a whopping £4000 for us this weekend with a 24-hour swimathon.

There were at least two boys in the pool at any one time and a total of 3684 lengths were swum by the 60 odd boys involved (some working harder than others) – this equates to a mammoth 92km swum. A great achievement from everyone involved but especially Rufus Pullen and Mr Sampson, neither of whom got much sleep I imagine!

Making A Difference

This week I was a keynote speaker at the AMRC/ABPI Patients First: Pioneering Partnerships Conference. Courtesy of my husband telling me to always say YES to everything!

The conference aimed to highlight the many benefits in establishing, managing and growing partnerships that aim to benefit patients sooner. Partnerships that range between medical charities and industry as well as patients themselves. I spoke about the importance of working together and the unique knowledge that patients and their carers have about the realities of living with their disease. I highlighted how The Brain Tumour Charity calls people like me an “expert by experience” and how they believe they can learn from us, as well as the importance of using data and the willingness of patients to share their data to bring benefits to other patients sooner. It was strange to be standing up on the stage in front of an auditorium of people talking about Silas and wanting to make a difference to families in the future but the response was incredibly positive and I hope that I left people with a clear reminder of why they do what they do – so that there will be fewer stories like mine. It is only by being bold and having our voices heard that patients/carers can begin to make a difference for other patients and advances in technology can only help speed this up.

I heard some inspiring people speak and it is clear that changes are happening – small steps but steps in the right direction – not so much as a trojan horse but several “trojan mice” – to quote one of the speakers – slowly infiltrating the healthcare system.

The video link for my speech is here


Silas’s story

Silas was a happy, sporty, bright 10 year old when he was diagnosed with a high grade glioma in August 2012. He had two days of headaches before he suddenly struggled to speak and was rushed to hospital in Kent. An emergency MRI showed a tumour the size of a tennis ball in his left parietal hemisphere. He underwent emergency surgery the next day at Kings Hospital, London where the surgeons removed 80% of the tumour.

They left the rest as they were worried its removal would paralyse his right hand side. When we found out the diagnosis a few days later and realised how aggressive the tumour was (we were told he had 12-18 months to live) we knew we needed to find a surgeon prepared to risk removing the rest of the tumour. We went to AlderHey Hospital in Liverpool for a second surgery a few weeks later and the surgeon – Connor Malucci – successfully removed the rest of the tumour (which had grown massively in the intervening weeks and had damaged a lot of the feeling in Silas’s right hand).

Silas then underwent a gruelling course of radiotherapy and chemotherapy (although to our disbelief and disappointment the tumour had started to grow back from the first operation before the radiotherapy started). This was followed by a rush to get him accepted onto a new immunotherapy trial at Great Ormond Street Hospital – which used the patients’ own dendritic cells and tumour to prime their immune system into recognising the tumour cells and attacking them – Silas was patient No.1 on the trial. Six months of immunotherapy and more of chemotherapy followed. Silas’s MRIs showed the remaining small bit of tumour was shrinking which was great but our hope was shattered when a scan in the middle of September 2013 showed the tumour was re-growing and had spread into his right hemisphere. We tried a different chemo regime but nothing stopped the tumour and Silas lost his battle just after Christmas 2013. His final few weeks were spent at home with his family thanks to the fantastic Outreach and Community Nursing teams. He was 11 years and 9 months old.

Silas fought his battle with inspirational courage and humour and never complained. He continued to smile and make people happy and shower them with his unconditional love right to the end. He also continued to play sport which he loved, particularly cricket (despite his right hand not working so well and having to relearn his bowling technique) and we will never forget him scoring his first half century in the summer of 2013, whilst on chemo. He was still playing up until a month before he died.

Couldn’t do it without you

Over the last few years, so many people have helped to raise money in Silas’s name. They have swum round islands and across channels, run through deserts and cycled the length of the country. They have danced and sung and run so many, many miles and smiled every step of the way.

Thank you all – every last one of you. For none of this would be possible without any of you and together we will help give other children the future that Silas should have had.

Bless you all. Keep Smiling…Imagining…Loving…Achieving and Singing.