Keira was born 11th September 2008 at Pilgrim Hospital Boston UK, weighing 7 lb, 2 oz – she was 2 weeks early. She stole (and continues to do so) the hearts of everyone who met her and meets her. She was breastfed for 6 months and was christened at 4 months old
She started Qwackers Pre-school at 2 years old, where her brother and sister had also attended. She quickly became friends with Lexi, who is still her best friend.
She started primary school in 2013 at almost 5 years old. She was in Mrs. Newton’s class (also known as ladybirds). Mrs. Newton thinks the world of her and said at every parents evening – if she could bottle Keira up and sell her, she would be a very rich woman because her manners, her nature, etc. is not something that can be taught, it comes from the heart and is something a lot of children lack. (A nurse after diagnosis made a similar comment.)
She loved ballat, she attended rainbows, loved school, loved adventures into the country. And she even fed snails. She loves nature and animals, but most of all lions.
We were on holiday last August where we had visited Isle of Wight and gone to the beach. While paddling in the sea, her legs gave way and she almost drowned. Her dad got her out, and I had to resuscitate her.
We were taken by ambulance to the hospital, where she quickly recovered and there appeared to be no after effects. After a while though, she couldn’t pass urine and she had to be Catheterized and then her speech started to slur. The doctor thought she had a stroke, and they did a CT scan where a lesion showed on the brain. With it being a small hospital on an island, they didn’t have expertise to make a judgement call and had to get a ambulance, nurse and doctor to come over from the mainland. When they came, they heavily sedated Keira so we could get to mainland with no complications. We travelled by ambulance to the ferry port about half an hour away, the ferry left early to get us to mainland, then an hour ride from getting off the ferry to Southampton Hospital.
She remained heavily sedated till the next day. As by this time it was 4 am, they reduced the sedation the day after, and she remained in and out of consciousness for 2 days. She had an MRI scan which showed DIPG.
She remained in the PICU in Southhampton for a week until she was strong enough to travel. We were then transferred to Queens Medical Center in Nottingham, because it’s a research hospital with very good doctors and a good children’s oncology department,
She was started on steroids to build her strength up, had physio, had speech and language help, and had experts in swallowing. She learnt to walk again although still uses a chair due to tiredness. The catheter was removed, and the nasal tube was removed because she was able to swallow again.
After a fortnight she started radiotherapy. She had 6 weeks, Monday through Friday, for 10 minutes a day. While having radiotherapy, because she was a out patient and the hospital is 2 hour drive away from where we live, we stayed at a place called Billy’s House which is part of CLIC Sargent and caters for children receiving cancer treatment away from home.
The 6 weeks were difficult as my other children were living away from us with their grandparents, while myself, Keira and my husband stayed in Nottingham. We missed our son’s first day of secondary school, his first parents’ evening, my daughter’s induction to secondary school and her parents’ evening. I had to get someone to run my brownie unit, and my sister and her family had to move into mine to look after my dog and cat.
The hospital was brilliant. They made her a CD of Frozen and Lion King songs (her fave film), and they played it everytime she had treatment. I couldn’t stay with her, although I could see and talk to her from the next room. She did keep her fave toy with her, though, a lion she has had since she was 18 months, and he goes everywhere with her.
After the 6 weeks, we returned home and we were living with her siblings again. Keira wasn’t strong enough to return to school full time but did attend half a day when she was strong enough.
Before Xmas we found out the tumour had shrunk by half .
She was strong enough to return full time to school in January.
She’s had to give ballat up because she doesn’t always have the coordination in her legs but has started horse riding instead.
We’ve just past the year mar,k and we were told originally she wouldn’t be here now. We are just waiting to meet Professor Gill to talk about the new CED trial.
Learn more about Keira at princess Keira’s dream
Submitted by Keira’s mother, Emma.