Welcome to Eleanor’s website…
This is where we’ll tell you all about Eleanor, her family, her friends, how she’s getting on and show you lots of pictures. Eleanor’s website is constantly growing -like her- so try to come back regularly to see what’s new and how Eleanor is getting on!
At the beginning of January 2015 and because of Eleanor’s rapidly declining eyesight, we took her to get her eyes tested. This unfortunately resulted in Eleanor being diagnosed with a Low Grade Hypothalamic Glioma (brain tumour) otherwise known as a Pilocytic Astrocytoma of which she is now undergoing a long journey of chemotherapy and other treatments for, possibly well in to her teenage years. The type of tumour Eleanor has is inoperable and will never go away unless a cure is found. Some people like to refer to this more broadly as brain cancer or simply a brain tumour, perhaps for greater effect or gravity, but we feel it is important each and every case is explained in detail, for clarity, otherwise the lines between diagnosis and prognosis can become very blurred between each individual case.
We want to raise more awareness around these conditions because early diagnosis is key to other children having more of a positive outcome -if diagnosed- from their inevitable treatments. Amongst many websites, one of them that comes close to helping parents with early diagnosis is: HeadSmart UK – www.headsmart.org.uk
The trouble is they do not list poor vision as being one of the possible signs/symptoms in the under 5’s, so some more work is needed in this area to change things for the better and raise awareness for parents, opticians, doctors & other professionals dealing with young children.
Addendum – after almost 2 years of campaigning and with your combined strength (our social media following), Headsmart UK finally buckled and changed their symptom guide to include ‘suspected’ vision loss in the under 5 age category & vision loss in the 5-11 age category. It is still not as easy to find as we’d like it to be (not apparent on the front of their website, but shows on the distributed symptom card – perhaps this is to appease us), so we will keep campaigning and trying to raise awareness – ourselves!!
If the chemotherapy and other treatments work well for Eleanor we are hoping she comes out of this with nothing more than being severely sight impaired (blind), because that is what this nasty tumour has done to her, most of all we wouldn’t want anyone else to have to wait around to get the right help.
Medical science being what it is Eleanor might even get some of her eye sight back one day, we’ll be keeping everything crossed for that one!
Looking forward to hearing from you all very soon!
Love, Tim, Kelly & Eleanor x