Born on 24th March 2011 (Aries) at 04.38 (4 days early), weighing a healthy 7lb 3oz
We call Eleanor our ‘little miracle’ because Tim was very ill a while ago and did not know if he could conceive naturally! Well guess what… he could, and Eleanor is here now to prove it! Up to the age of 3 and a half, Eleanor was a perfectly healthy little girl with absolutely no sign of illness.
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 targeted treatments for. These treatments are likely to continue well in to her teenage years/early twenties. 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 for each individual case can become very blurred.
This website primarily goes in to what happened after her diagnosis, and strives to raise awareness in to not only her specific condition, but also the fact that parents are often not listened to when they visit health or medical professionals. You simply have to push hard if you believe something is wrong, and do not rest until you are satisfied.
Eleanor is officially registered as ‘Severely Sight Impaired (Blind)’; because of this she qualifies for a blue disabled badge. A lot of people wonder what’s going on with Eleanor’s eye sight, so we thought we’d put up a section all about it.
In simple terms; the cables that connect her lovely eyes to the part of her brain that processes what she sees, are damaged beyond repair. Prescription glasses will not fix her eye sight as it is not her eyes that are at fault. Eleanor has a very complex vision problem.
It is very difficult to explain what Eleanor can see; she sees light and dark, she sees huge objects but no detail, she sees changes in floor coverings if they go from light to dark or visa versa. Eleanor can’t truly interpret colour. Eleanor can’t really follow objects. Some days Eleanor seems to see better than others, but what she might see is so limited it is of no real use to her in day to day life. What vision she does have is dramatically different to how you may perceive the world around you, but to Eleanor, this is her normal. Eleanor cannot really make out faces to recognise one from another, she might see things like a pair of glasses or a moustache or beard, if you have your mouth open or closed, but no detail. She cannot remember what her close family look like, let alone anyone else. She has on the other hand, impeccable hearing!
Eleanor’s RIGHT eye…
The messages from her right eye are worse than what gets through from her left eye. Sometimes she sees flashes of light in her right eye but it is not her eye, it is the damaged nerves playing havoc with her brain, it’s like an untuned TV channel – she doesn’t actually see anything that you would see. This eye is effectively partially disconnected from the part of her brain that processes what it sends.
Eleanor’s LEFT eye…
Eleanor sees very very little through her left eye, what she does see is possibly only through a minuscule, blurred, colourless, extremely short sighted, peripherally limited pinhole. Eleanor is getting used to it and getting on with the life she does have.
Eleanor bumps in to things, she can’t see things she drops, she can’t see her food, she can’t see her plate, she cannot see our faces (many things we all take for granted) BUT she’s coping very well adapting to having literally no vision and we are totally committed to helping her through every step of the way. Eleanor is NOT totally in the dark and we hope she never will be.
Eleanor’s Brain Tumour is pressing on and has invaded her optical nerves in the Hypothalamus area of her brain, just over the Optic Chiasm. There are literally millions of nerve fibres that connect your eyes to your brain’s visual message centre, towards the back of your brain.
With currently known medicines and treatments, it is not possible to repair damaged optical nerves.
The Doctors only give Eleanor a 30% chance of any improvement from where she is now with her eye sight, so it looks like she is stuck this way until the medical profession make advances that might repair her optical nerves, but this is a very complex issue and may take many years before it becomes a reality. Eleanor does however have age on her side, so she might one day be able to see a lot better again, there’s always hope!
With all of the above in mind, it is still not the main problem at play here. Eleanor still has some potentially stubborn brain tumour/s that need to be kept under control and managed, so they do not do any further damage to other delicate parts of her brain. This will take many years of gruelling chemotherapy and when she is a bit older, possibly (but hopefully not) some form of radiotherapy.
Eleanor is quite the character; she loves music, loves listening to books and is keen to learn new languages, as well as perfecting her own. The future will hopefully still hold many opportunities for Eleanor even if she does not have the gift of sight anymore.