Silas’ 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 had emergency surgery the next day at Kings Hospital, London where 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).
Our Supporter Group
“We have set up a supporter fund with The Brain Tumour Charity as we are keen to fund research into the treatment and cure of childhood brain tumours so that other families facing this journey have more hope. Silas inspired many people during his illness and hopefully his legacy will encourage others to continue to raise funds in his name.”
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 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 Number One 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 nine 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, while on chemo. He was still playing up until a month before he died.
For Silas
Since his death, many wonderful friends have supported us in raising funds to help change the outcome for these children over the last few years. They have run marathons, cycled the length of the country, swum, held balls and sleepovers, recorded Song for Silas and more.
Most people have no idea that brain tumours are the biggest cancer killer of young people and we want to change this. All the funds we raise go into paediatric brain tumour research to help drive new treatments and give families more hope.
We published a book A Mighty Boy in 2017, with all proceeds going to the charity – it describes our journey as a family, through Silas’s treatment and our grief. We wanted to raise awareness about brain tumours as well as help other families travelling the same path to feel less alone.
It has now been over 10 years since Silas died and we still miss him every day – his laughter, his madness, his hugs, his out of tune singing, his capers, his kisses, his hair twirling, his dancing round the kitchen – it never really gets any easier, I guess we just get slowly better at carrying our grief as time continues to tick inexorably on. Incredibly we have now raised more than £1 million under the umbrella of the Silas Pullen Fund – a truly mighty amount. There have been so many people who have helped us reach this milestone and we are grateful to everyone who has danced, laughed, sung, dug in their pockets and achieved so much in Silas’s name. A Mighty Thank you to you all. In particular, we would like to thank the family of Rory St John for helping us over the line. Nothing will ever bring back both our beautiful boys but we will continue to strive to change the outcome for other children in their names and I’d like to imagine that our boys are somewhere, just out of reach, sharing a joke or two and maybe a silly jig.
More information about The Silas Pullen Fund can be found on our website www.themightyboy,com
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