As a part of CelebMix Cares, we are taking part in Brain Tumor Awareness Month this March. Last year, we told the story of the then four-year-old Eleanor Stollery, who was diagnosed with a Hypothalamic Glioma, otherwise known as a brain tumour. This year, we aim to give you an update on her life.
Because of her tumour, Eleanor has suffered visual impairment and is officially registered as “severely sight impaired (blind)”. Eleanor’s type of tumour is inoperable and will never go away unless a cure is found. Unfortunately, only 2% of the cancer research funding in the UK is spent on brain tumours despite the fact that more children and adults under the age of 40 die of a brain tumour than from any other cancer types.
Eleanor, who is turning six on March 24, is still fighting bravely. Although she has completed chemotherapy for now, the tumour is still the same size and because of hormone damage, Eleanor has to have a monthly injection until she is 11 years old. Despite all this, she is still a happy and positive young girl, who won’t ever give up. we have spoken with Eleanor’s parents, Kelly and Tim, to give everyone an update on her condition and life.
Q) How has Eleanor’s condition changed since we spoke last year?
A: Since last year’s article Eleanor has completed an 18-month chemotherapy (ended August 2016) there has been no change to the size of her tumour since chemotherapy started in January 2015 and there is now also damage to her hormones requiring a monthly injection to balance them. There has been very little improvement in her eyesight – she remains severely visually impaired but is coping extremely well and has now learned the Braille alphabet so can read basic Braille – she still has a lot to learn, Braille really is like another language!
Q: Has brain tumour treatment gotten better in the past year? What could be improved?
A: Treatment for brain tumours has not improved in many years. Statistically, brain tumour patients have less success compared to breast- and other cancers. So much more needs to be done for brain cancer to catch up with developments in other diseases. Awareness is so important, most people do not realise that brain tumours are the chief cause of cancer deaths in children and young people. (See http://www.braintumourresearch.org for more statistics). More funding for research is vital to improve treatment for future patients.
Q: You have chosen to make Eleanor’s journey public on social media. Why did you make that decision?
A: When our daughter’s failing eyesight turned out to be the side effect of a brain tumour we were absolutely devastated beyond belief. Rapid vision loss was all Eleanor presented with, she had none of the ‘usual’ side effects associated with brain tumours and we wanted to make sure people were aware that if they had any concerns about their children’s eyesight, or any other health matters for that matter, that they push health professionals to investigate. It was never our intention to scare people into worrying about every cough their child has, but most parents know their children so well, they are the ones who notice those subtle differences, not the GP who sees them in a 10-minute consultation. We also hoped that by putting Eleanor’s story out there it might help others going through their own cancer battles. We have had many messages of thanks from adults going through treatment telling us that seeing Eleanor going through what she goes through on a daily basis with a smile on her face helps them through their dark days.
Q: How do Eleanor and your entire family stay positive? Can you maintain a “normal” daily routine?
A: Sometimes it can be very hard to stay positive, we have our good and bad days but mostly we are so grateful that we still have our daughter with us. Others are not so lucky. She is a happy, bright little girl with a real zest for life, it’s often impossible not to feel optimistic when we are around her. Our life may not be ‘normal’ to most but over the past two years, we have adjusted to create a new ‘normal’ one where the rollercoaster may be slightly steeper at times but ultimately our aim is to make the most of every day. Raising awareness along the way!
To learn more about Eleanor Stollery’s story and progress follow her family on social media:
Twitter
Facebook
Official website
Kelly’s blog
To create awareness about the story of Eleanor Stollery use the hashtag #eleanorsvoice