Right at the very beginning, very soon after Eleanor was diagnosed Tim and I decided to set up a social media profile to document her journey. Initially it was a way to update the countless friends and family who wanted to know how she was in one hit, but swiftly became an excellent way to raise awareness of childhood brain tumours. Social media is so incredibly powerful and can reach places nothing in the past has been capable of.
Eleanor’s route to diagnosis, thankfully for us, was a relatively smooth process but I put that purely down to Tim’s tenacity. Had he not pushed for her to be seen when he did and waited for that GP referral we could have been in a very different place now. We caught her tumour before it potentially caused even more damage. Others are not so lucky. I have read of parents visiting GP’s and even A&E on numerous occasions and just being passed from pillar to post with no one taking their concerns seriously, before it is too late.
Eleanor presented with symptoms no one would have considered dangerous! Poor eyesight runs in my family, I wore glasses from a really early age and I had never known my Mum without her spectacles. Naturally, I assumed Eleanor only needed glasses when she started to struggle to see things; things she could before. Tim was, thankfully, more concerned. Now I look back, with the insightful accuracy of hindsight, the changes were more rapid than could ever be ‘normal’.
A frustration persisted since her diagnosis. There was a period between her initial loss of vision and our horrific trip to Moorfields, when even if we had considered something as sinister as a brain tumour, the primary, national brain tumour charity’s awareness campaign did not list, ‘rapid or sudden loss of vision’ as a symptom. Not in their under 5 category.
We made it an aim to help raise awareness with #Eleanorsvoice, and find a way to get this symptom added to the Brain Tumour Charity’s ‘Headsmart‘ campaign. Speaking with other parents and to medical practitioners, we found out that initial detection via optical related issues was reasonably common. Not the most common but who decides the threshold?
If it were added, maybe, when presented with this sign, a parent or a health professional would ask the right question of the right person sooner; lead to the proper referral earlier; perhaps catch it a day, a week, a month, or a year before another symptom shows.
We passionately believed the list needed to be changed.
It took over 2 years of hard work but eventually in 2017 the Brain Tumour Charity added ‘Suspected loss of vision and loss of vision’ to all three of their age categories!
8 months in and due to a celebrity ball we were invited to by a children’s cancer charity, Eleanor’s social media profile rocketed and more and more people were following her journey. Because of this Eleanor has had some incredible experiences, met some wonderful people and our awareness campaign has spread far and wide. More and more people now know that children get brain tumours and what the symptoms may be. We have had many messages of support, people thanking us for putting our story out there to potentially help others.
We have never actively asked for people to raise money for Eleanor or our family, in circumstances like our own people do feel compelled to help, and as they don’t have the miracle cure for cancer, they run marathons, or throw themselves out of a planes for sponsorship money which they organise themselves and we may promote to help them reach their goals. Of course we are never going to turn down these generous gifts, anything that will help enrich Eleanor’s life we will grab with both hands but our main aim always has and always will be to raise awareness of the symptoms of paediatric brain tumours.