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Welcome to Eleanor’s website…

Eleanor’s website is constantly growing -like her- so try to come back regularly to see what’s new and how she is getting on! You can also follow Eleanor’s progress and help us raise awareness on the following social media profiles:

To learn about Eleanor’s blossoming acting career, you can click here.

Eleanor has an inoperable brain tumour which has caused her to become severely visually impaired. We do not want to let this define her and she carries on with life as normally as is feasibly possible.

We do however 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 UKwww.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. Above 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 day!

Looking forward to hearing from you all very soon!

Love, Tim, Kelly & Eleanor x

#eleanorsvoice

Contact Us

About Eleanor…

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’s eyesight…

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.

Medical…

Lots of people have asked us about Eleanor’s chemotherapy and medical treatments, how it works and when it is. Sometimes you can get a little tired of trying to explain it, as there is just so much it’s a minefield! So, if you can spare a minute, we’ll have a go at explaining it all here – keeping this section updated as Eleanor’s journey continues, so you can see where she’s at!

MRI Scan with Gadolinium contrast
Observation period: every 3 months

In order to monitor Eleanor’s brain tumours and check how any treatment might be helping keep her disease under control, an MRI scan of her brain and spine is required every 3 months. This scan takes approximately 45 minutes and Eleanor has to lay completely still in the MRI scanner. Up until about the age of 6, Eleanor had to have these scans under general anaesthetic, nowadays she lays still throughout, so there is no need to put her to sleep for the scan anymore. This makes the whole process considerably easier.

Triptorelin IM Injection (Gonapeptyl)
Treatment period: Monthly – dosage currently at 1ml or 3.75mg

Eleanor’s main brain tumour is pressing on her pituitary gland, the gland that creates your growth hormones. If this gland is damaged it can cause all sorts of development and growth issues. In order to suppress this, Eleanor has to have quite a nasty intra muscular Triptorelin injection exactly every 28 days, until approximately the age of 11. She has these at home or whilst at school, and our community nurse usually administers them in to her thigh muscle on her right or left leg. It wasn’t easy at first but now she has become used to them.

Regimen name: SIOP LGG 2004
Carboplatin/Cyclophosphamide/Cisplatin with Vincristine
Treatment period: 18 months
Click here for a detailed breakdown of this protocol

This was the first attempt at bringing Eleanor’s brain tumour under control.

Regimen name: Phase II – Vinblastine
Treatment period: 52 weeks
Click here for a detailed breakdown of this protocol

This chemotherapy regimen was started after a second lesion was found in Eleanor’s brain, following an MRI scan.

Regimen name: Irinotecan & Bevacizumab with Vinblastine consolidation
Treatment period: 18 months
Click here for a detailed breakdown of this protocol

This chemotherapy regimen started shortly after the results of an MRI scan, which when compared to an MRI scan taken a year before, showed further growth/progression of Eleanor’s main brain tumour.

More information on where Eleanor is at with her journey following more growth & enhancement of her main tumour.

Please click here

Endoscopic transchoroid debulking (partial resection of optic pathway hypothalamic lesion) & septum pellucidotomy, with Rickham reservoir implant.

Click here for more detail

There will be more treatment, this is a placeholder.

Media

Aside from all that is going on in Eleanor’s life medically, she has taken a real interest in music & performing, and in 2019 we applied for her to attend an audition for a West End theatre production, purely for the experience! To our complete astonishment, Eleanor got the part and this has now led to many more exciting acting opportunities for her. Eleanor has an Agent and is listed on Spotlight.
For more info on this area of Eleanor’s life, please click
HERE.

See below for various media that Eleanor has appeared in so far…

February 2015
Gazet van Antwerpen

A strange twist of events on social media led to Eleanor’s story being featured in one of Belgium’s foremost newspapers.

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Autumn/Winter 2015
Local Guide #21

The first article covering Eleanor’s journey, written by us and published in a locally distributed magazine.

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September 2015
Richmond & Twickenham Times

Raising awareness in the local newspaper.

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February 2015
Gazet van Antwerpen

A strange twist of events on social media led to Eleanor’s story being featured in one of Belgium’s foremost newspapers.

view

Autumn/Winter 2015
Local Guide #21

The first article covering Eleanor’s journey, written by us and published in a locally distributed magazine.

view

September 2015
Richmond & Twickenham Times

Raising awareness in the local newspaper.

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January 2016
Richmond & Twickenham Times

A small request for raffle prizes in the local newspaper.

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Spring/Summer 2016
Local Guide #22

The second article covering Eleanor’s journey, written by us and published in a locally distributed magazine.

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March 2016
Community Nursing Team
HRCH News

Eleanor paid a visit to her local community nursing team’s HQ.

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January 2016
Richmond & Twickenham Times

A small request for raffle prizes in the local newspaper.

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Spring/Summer 2016
Local Guide #22

The second article covering Eleanor’s journey, written by us and published in a locally distributed magazine.

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March 2016
Community Nursing Team
HRCH News

Eleanor paid a visit to her local community nursing team’s HQ.

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Autumn 2016
Freemasonry Today

Eleanor very generously gets her first Braille device.

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Spring/Summer 2017
Local Guide #24

A third article covering Eleanor’s journey, written by us and published in a locally distributed magazine.

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Autumn/Winter 2017
Local Guide #25

A fourth article covering Eleanor’s journey, written by us and published in a locally distributed magazine.

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Autumn 2016
Freemasonry Today

Eleanor very generously gets her first Braille device.

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Spring/Summer 2017
Local Guide #24

A third article covering Eleanor’s journey, written by us and published in a locally distributed magazine.

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Autumn/Winter 2017
Local Guide #25

A fourth article covering Eleanor’s journey, written by us and published in a locally distributed magazine.

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Spring/Summer 2018
Local Guide #26

A fifth article covering Eleanor’s journey, written by us and published in a locally distributed magazine.

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May 2018
Richmond & Twickenham Times

On the front cover of the local newspaper, as Eleanor’s second chemotherapy regimen began.

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Autumn/Winter 2018
Local Guide #27

A sixth article covering Eleanor’s journey, written by us and published in a locally distributed magazine.

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Spring/Summer 2018
Local Guide #26

A fifth article covering Eleanor’s journey, written by us and published in a locally distributed magazine.

view

May 2018
Richmond & Twickenham Times

On the front cover of the local newspaper, as Eleanor’s second chemotherapy regimen began.

view

Autumn/Winter 2018
Local Guide #27

A sixth article covering Eleanor’s journey, written by us and published in a locally distributed magazine.

view

December 2019
The Telegraph

Celebrating Eleanor’s professional theatre debut at The Old Vic, and raising more awareness.

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June 2020
The Amber Trust

A video feature produced by The Amber Trust for their major new online resource “Amber Sound Touch”

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June 2020
BBC Radio 4 – In Touch

Eleanor featured on BBC Radio 4’s In Touch programme on behalf of The Amber Trust

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December 2019
The Telegraph

Celebrating Eleanor’s professional theatre debut at The Old Vic, and raising more awareness.

view

June 2020
The Amber Trust

A video feature produced by The Amber Trust for their major new online resource “Amber Sound Touch”

view

June 2020
BBC Radio 4 – In Touch

 

Eleanor featured on BBC Radio 4’s In Touch programme on behalf of The Amber Trust

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December 2020
The Amber Trust

A short video of Eleanor singing for The Amber Trust’s Christmas campaign.

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February 2021
Vision Foundation

A micro film produced for the Vision Foundation’s exclusive online event “Taking Centre Stage : Sight Loss in the Spotlight”

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March 2021
Eleanor’s Birthday Cake!

The most amazing sensory cake deserves it’s very own article!

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December 2020
The Amber Trust

A short video of Eleanor singing for The Amber Trust’s Christmas campaign.

view

February 2021
Vision Foundation

A micro film produced for the Vision Foundation’s exclusive online event “Taking Centre Stage : Sight Loss in the Spotlight”

view

March 2021
Eleanor’s Birthday Cake!

The most amazing sensory cake deserves it’s very own article!

view

Eleanor’s Voice Twitter feed…

A Message…

(from Eleanor’s Daddy – Tim)

“I’ve been trying to put in to words how overwhelmed my fiancée Kelly & I have been by all the kind messages of support received and continue to receive as people are finding out this awful news. We are so grateful for all the presents, cards, texts, emails & messages on social media – it makes such a difference knowing we are at least in your thoughts and whatever your beliefs, perhaps prayers too.

As most of you know our precious little daughter Eleanor, who is -at the time of writing this- 4 years old, has been diagnosed with a probable Hypothalamic Low Grade Glioma brain tumour (Pilocytic astrocytoma) which -if there are no further complications- will most likely lead to her being treated for a long time to come, using chemotherapy now and when she gets a little older, quite possibly radio or proton beam therapy.

For now and on the outside she remains a bright, happy and positive little girl who knows she’s a little poorly. Her eyesight has suffered tremendously and she is now registered severely sight impaired (blind). Other than that you wouldn’t know anything is wrong, however, as the chemotherapy takes its toll over the coming weeks, months and years, this may well change.

Words alone cannot express how utterly devastated Kelly, close family & I am. Personally how unlucky this makes me feel with my own battles with Cancer & my mother’s Parkinson’s disease – whom I cared for, for approximately 19 years until her sudden death in 2012. The knock on financial ramifications are unmentionable and we are attempting to carry on as normally as we can.

We are trying our best to raise awareness so other parents do not get the run around if they are concerned about their child’s health. We acted fairly quickly but could have so easily left this longer as the symptoms were not that immediately apparent. In order to raise as much awareness as possible, especially as her story gains momentum, please can you follow and promote any or all of the social media profiles we’ve created. Direct links below…

It has been the request of many that we accept money to help with our expenses, a ‘fighting fund’ if you wish, as it is also a possibility that Eleanor may need treatments abroad in the future. Many have already contributed, to which we are eternally grateful. This is perhaps another way for those of you that know us or those that feel compelled, to help us directly.

If you would like to help in this way please contact us.

Whatever happens and whatever the outcome we will always try our utmost to raise awareness and make sure other children can be diagnosed quicker and begin their treatments a lot earlier, hopefully limiting any debilitating symptoms. Understandably, each case is unique and each child will react to treatments differently.

At the very least please don’t let Eleanor’s story become yesterday’s news, keep her in your thoughts and maybe one day you’ll be able to help someone else facing the same or a similar dilemma, remembering and referring to her story.

Thank you.”

Contact Us…

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