#bemoremaisie is a Special Named Fund at CCLG raising money for research into brain tumours, in memory of seventeen-year-old Maisie.
Maisie was 11 years old, when on the 15th January 2016, she was diagnosed with a brain tumour, her mum Dawn shares her story...
Maisie was a beautiful, thoughtful, fun-loving girl that loved her dancing and gymnastics. She was a very funny, caring and bright young girl who really enjoyed school, especially maths which was by far her favourite subject. She was fascinated with nature and animals and her ambition was to one day become a zookeeper. A love for everything purple and green along with her favourite Disney villain Maleficent. At aged 10, Maisie was in her last year at primary school and growing up fast and was ready to take on the world with her beautiful smile.
There is so much to tell about the events leading up to her diagnosis but the main point would be the sudden change in her eyes and her muscle weakness. At a parents evening in October 2015 I glanced across the room to where Maisie was sitting and asked her why she was going cross eyed? I’m not? was her reply, then when I looked again her eyes appeared to be normal again. I subsequently made an appointment for her to have an eye test just to make sure there was nothing untoward especially because a couple of months earlier she had complained of neck ache and headaches which the GP had prescribed ibuprofen which seemed to help.
We saw an optician in November and told him of the issues, he performed an eye-test and prescribed Maisie with some glasses which she was extremely excited about – and she rocked them! He said that he would make a referral for her to be seen at the hospital as she could possibly have corrective surgery if it was needed.
In early December, Maisie’s gymnastics coach mentioned that Maisie was displaying signs of weakness on her left side and we thought that maybe she could do with improving her core strength so as a family we all started trying to do this as we thought it would be good to do it together – I didn’t last long!
On Boxing Day Maisie came to be me and said mummy, I am struggling to lift my left arm up. I asked her if she was in any pain, to which she replied no, but my arm is just hanging there. I can only describe this as looking like she had had a stroke and I started to wonder whether she may have a trapped nerve or something which could explain all of the things that had happened. Maisie was not a child that ever really complained about anything, so I thought best to get this checked and called the GP. We saw the GP on New Years Eve 2015, explained everything and he referred her to an Orthopaedic consultant at our local hospital. When Maisie returned to school at the beginning of January the weakness in her left arm literally spread to her left leg on a walk to school.
Something was not right, she needed to be seen asap so I called the hospital to see where Maisie was in the list to be seen, I was told they had her notes and the consultant would be in touch – this was not good enough, so we went private, she was seen the following day (by the same consultant). When we entered the room the first question the consultant had was what was wrong with her eye, so we explained everything to him, and he checked her over. He said that he would like for her to have blood tests and also suggested an MRI – at the time, this all meant nothing to us and we just carried on as if nothing had happened.
On the 14th January 2016, Maisie underwent a 2 hour MRI – why so long, well they had to do it a second time with contrast – again, this meant nothing to us but clearly it did to them. The 15th January 2016 we were called back to the Norfolk & Norwich University Hospital to discuss the results - this is when our world fell apart and we were told that our beautiful little girl had a brain tumour.
On 4 February 2016 Maisie underwent a biopsy which then turned into a 7 hour operation to remove as much of the tumour as was safe to do so. During the surgery it was confirmed that the tumour was found to be a benign low grade pilocytic astrocytoma, quite common in adolescence. It was however, situated in her brainstem making surgery exceptionally dangerous, but when you are told its surgery or death, you know what you have to do. The complexity and risks of her surgery, however, were not explained fully and whilst there was always a risk of complications nothing prepared us for the level that followed.
They brought Maisie round straight after the surgery and said that there were no complications and confirmed that 80% of the tumour had been removed, the remainder was inside her brainstem so unfortunately, could not be touched. But, although Maisie was awake and alert, she wasn’t moving. She could feel me touching her but she couldn’t move her body. This was possibly down to the swelling inside her little head and hopefully after some rest and recovery time things would return to normal.
Unfortunately, later that evening Maisie's little lungs couldn't take anymore, her left lung collapsed so for her safety she was placed into a coma and taken into intensive care. After the longest 5 days in PICU at Addenbrookes Maisie was woken up and there were those beautiful smiling eyes but she was still unable to move. The following days brought more surgery due to her lungs not working properly she needed to have a tracheostomy to assist with her breathing/ventilation and was basically only breathing by the machine she was attached to.
The road ahead was not an easy one, Maisie went through one knockback after another. She remained in Addenbrookes for 9 ½ months following the surgery, needed a gastrostomy to feed her as she couldn’t swallow well enough to eat. An MRI before initial discharge showed signs of tumour growth so she underwent 6 weeks of radiotherapy before finally being discharged, quadriplegic, but unventilated to our new home. Sadly, over the coming months despite being told the tumour was stable, it was still growing and Maisie developed hydrocephalus which required 2 further brain surgeries to fit a VP shunt in her brain to drain the fluid. This also set her back with her breathing and she went back onto the ventilator.
What this meant was that again the tumour was growing and in June 2018 Maisie started 18 months of weekly chemotherapy maintenance to try and stop the tumour. Chemo finished in November 2019 and the results looked to be positive – then covid! We basically closed our doors to the world, except for her 24/7 care team on 15th March 2020.
Covid was a bit of a blessing for us as we got to spend some quality time together and we could really concentrate on her rehabilitation. Over the years Maisie’s movements had become increasingly stronger and although still quadriplegic she was slowly making some incredible and sometimes unbelievable progress. In June 2021 something awesome happened, Maisie had her tracheostomy removed – not something we ever thought possible after being told it was for life. Her progress was so much so that we got her a funded placement at The Childrens Trust (Brain Injury Rehabilitation) in Tadworth for 12 weeks of intense rehab in 2021 which was phenomenal - she even stood up in the swimming pool!! Her progress continued to come on in leaps and bounds, she sat a GCSE in Math’s and was moving towards a higher-level paper. She had written a beautiful poem and story (which were later published). We somehow managed to get her a further funded 8-week placement back at Tadworth in 2022, we were just waiting for an admission date.
After feeling a little under the weather with what we thought might be a chest infection brought on by her lack of sleep during the heatwave on 9th August 2022, Maisie went into respiratory arrest at home and my husband Darrell successfully managed to resuscitate her. When the paramedics arrived, she was as right as rain so we thought maybe she had something lodged in her chest that the resuscitation had dislodged. It was all such a shock and she was taken off to hospital, I was told to have a strong cuppa and then to make my way there which I did a short while later.
When I arrived, Maisie didn’t seem right, she was quite vacant and was unable to talk and then she went into respiratory arrest again, this time they sedated her into a coma and admitted her to the adult intensive care unit in Norwich.
The following day we asked if they thought that this was anything to do with ‘Bob’ (the name Maisie had given her tumour when first diagnosed) and her consultant said yes. We knew that Maisie’s wishes were for no further surgical intervention, in her eyes and as much as we had a happy life, she didn’t want her quality of life to be worse. I can’t go into all the events that followed but sadly on 15th August 2022 we turned off her life support and our gorgeous girl went off peacefully off to sleep for the last time.
Her unbelievable and sometimes remarkable outlook on life was quite simply awesome. She took everything in her stride, she continued to think about others, she had the most wicked sense of humour, so much determination, resilience and stubbornness, she never complained or moaned, although she may have rolled her eyes a few times – but despite everything – she smiled her beautiful smile through it all and continued to be awesome.
I read a post on our Facebook page (under TeamAwesome) just the other day which said that in her short time with us Maisie had such an amazing effect on people that some never make in their entire lives. Shortly after she passed someone commented that we could all take a leaf out of Maisie’s book of life and that we should #bemoremaisie – and there it is.
Despite everything that Maisie faced, she was always keen to help me raise awareness of brain tumours by sharing her story wherever and whenever. She received several awards including Inspirational Child Award, Child of Courage Award, Perseverance Award and then a Special Recognition Award after she passed. Through all this she never really understood why people felt like this about her, she didn’t think she was anything other than a young girl faced with a horrific illness – but she was so much more.
I had wanted to set something up in her memory but I don’t have it in me to run a charity, I work with one and I can see the time involved. I never realised that there was even an option like this until I saw something recently on Facebook after another young person had passed. I then thought what better way to help keep her memory and legacy of helping others alive than to create this Special Named Fund. It might amount to little but then again, people are still asking me if there is anything they can do in her memory so this would be perfect.
Since Maisie’s diagnosis there have been breakthroughs with certain medications and treatments but still there is not enough funding for brain tumour research. Only 1% of national funding for cancer research goes towards brain tumour research despite 25% of cancers in children being brain tumours. I don’t need to quote the figures, those that know, know – it is those that don’t know that need to be told.
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