I’M RUNNING LONDON MARATHON!!
Everyone who knows me knows, if I have got in on ballot, I would be raising funds for Blue Skye Thinking. But the powers that be have given me a wonderful opportunity to run for CCLG (Children’s Cancer & Leukaemia Group) and raise awareness for them too.
On the day I accepted my place to run for CCLG, Andrew & Sally were in Leicester meeting Angela at CCLG. Angela has been appointed as a new Project Manager to work towards the collection of data for every child who is treated for a brain tumour.
This role has been funded by Blue Skye Thinking.
In 40 years, the survival rates for childhood brain tumours has not improved. There is so little research into the condition and even more shocking, until now, there has been no facility to record and share data.
Skye Hall died at the age of 5 years old from the treatment he was given for his brain tumour. It killed his brain. The treatment protocol he was given had been withdrawn in other countries, because the professionals had already bared witness to other children experiencing the same ending as Skye. This data had not been shared with the teams treating Skye – until after it was too late..
Angela will hopefully help put a stop to this.
This is a tiny part of the vital work of CCLG. Over the last 40 years, CCLG has played a key role in major improvements in the survival rates and standards of care for children with cancer. As you have read above, there are some childhood cancers where the child has a poor outlook. Further research is vital. The money raised will fund research, clinical trials, biological studies and systematic reviews. All of which are needed if more children are to survive and have a decent quality of life.
I am writing this on the day I have read a Facebook post from the parents of Ollie Gardener; A 10-year-old boy who lives around 15 miles from my home. He is currently waiting for his body to give out, while his family watch him slip away. He miraculously survived his first brain tumour; however, it returned. The treatment for a returning brain tumour is completely experimental. There is no protocol. Ollie has been travelling to Germany to receive his treatment. Unfortunately, it hasn’t saved his life. It is heart breaking.
With your help, in 40 years time childhood cancer could be as treatable as a common cold. Let’s hope so hey?
Thank you xx
3rd November 2017
P.S 40 years has been mentioned a few times – it bears no relation to the fact might be celebrating the big 4 0 in 2018!