Keira has been fighting DIPG since August 2014.
She is receiving treatment via CED in Bristol. Each hurdle she faces, she clears and bounces back. The courage of this brave little girl can be seen when you read Keira’s story in the words of her Mum, Emma.
“Back in august 2014 we heard the words no parent should ever hear ‘I’m sorry but your daughter has a inoperable brain tumour and there’s no cure’. Keira was 5 when she diagnosed, she turned 6 a month later, was that going to be the last birthday we saw her celebrate?
So, with a lot of help within our community we made it a birthday to remember. Like most girls Keira loves Minnie Mouse, dancing, singing and she loves lions – her favourite animals. Up until she became ill, she attended ballet, Rainbows, loved school, her family but most importantly she loved her stuffed lion which goes everywhere with her. She also loves her best friend Lexi who being almost a year younger has showed so much courage, support and has remained by Keira’s side through the good and the bad – a bond so much stronger than just a friendship.
Keira is a friend to everyone, all animals and can light up a room by just being in it with her sunny disposition, she is a mother hen at school and the person all children in her class turn to when they are happy, sad, ill or they need help. Her reception class teacher Sarah Newton said to us so many times at parent evenings that if she could bottle Keira up and sell it she would be a very rich woman because her nature and mannerisms aren’t something that can be taught, it’s something that comes from the heart. A nurse, without knowing it, once made the same statement, bringing much needed laughter to us.
She has endured so much in the two years, from being in PICU fighting for life, to learning to swallow, being catheterised, adapting to giving up her beloved ballet to using a wheelchair, intensive radiotherapy, scans, blood tests and missing school but she has done it all with determination, strength, courage and a smile on her face, never once crying or moaning.
We are told its a rare tumour but so many parents hear those same words with children fighting D.I.P.G. Sat in that doctors office with our daughter fighting for her life in PICU, our whole world came crashing down around us, why is there no cure? We have a big team of people who work around the clock to try and change that, to find a cure, to raise awareness and to be a voice for our children.
In September 2015 an MRI scan showed Keira’s tumour had grown really large after remaining stable for a year. In October 2015 we were accepted for treatment involving CED in Bristol, in which 4 micro catheters were inserted into the tumour with assisted robot technique by Professor Steven Gill and then chemo can be infused directly into the tumour. This wasn’t without its problems. When Keira developed another condition called posterior fossa syndrome, which meant her brain shut down to repair itself, and we spent 3 months in hospital while she recovered and re-learnt everything she learnt as a baby. Once again she bounced back.
We then got the news that after one infusion Keira’s tumour had shrunk by 1/3 which was way more than the doctors expected as she didn’t have full chemo due to size of tumour, however we had got a secondary tumour just outside the pons. We’ve just finished our second course of radiation and are currently waiting for an MRI scan and return to Bristol.
There are such a big team of people who have been by our side and fighting with us – there’s Funding Neuro, Lisa Spedale and Kira Spedale’s foundation, Anna Brooks with Daisy’s ‘Do it for Daisy’, doctors, nurses, physios, support workers – without these people fighting along side us over the last few months we wouldn’t be where we are now. Keira doesn’t have DIPG symptoms, the symptoms she has are related to the second condition that developed after surgery, but she remains fun loving and happy with a witty sense of humour and is still enjoying life. She is a inspiration to so many children and families worldwide.