BiographyMaisie was a bright, funny, loving girl who loved to dance, do gymnastics go on nature walks and everything a normal 10 year old girl would enjoy. Then in 2015 we started to notice a few things, occasional vomiting in the morning, neck pain and headaches, sudden turn in her eye and then the final straw for us was muscle weakness down her left side.
When we walked in at the hospital the first thing the consultant asked was what was wrong with Maisie's eye.....he knew! He suggested an MRI and blood tests but the MRI was enough to show the tumour in her beautiful head. Our lives changed that day but nothing prepared us for what happened after her surgery on 4 February 2016. Everything went really well and they were able to remove 80% of 'Bob'. There were no obvious complications during the 7 hour surgery but when she woke up she could feel but she couldn't move. They moved her to the PHDU to recover but later her lung collapsed and she was placed into a coma and transferred into PICU. I look back now and wish they had left her to sleep after the surgery instead of waking her, it my have given her body some time to recover, but hindsight is a wonderful thing. When she was brought round the extent of the situation became real. Maisie was unable to move her body and in order to help her breathe she was given a tracheostomy and ventilated and also a button into her stomach to feed her. The journey in hospital took 9 1/2 months and included daily physio to help her to regain some movement which she did and then we discovered the tumour was still growing. Before being discharged she underwent a 6 week course of daily radiotherapy and then we came home. A new home that we had to move to in order to even bring our girl home.
Over the next few months Maisie did really well, off ventilation during the day, great progress with her movements and then boom she aspirated a yoghurt into her lungs and she was back on the ventilator to rebuild.
2017 was an ok year, however, towards the end of the year she needed an admission into hospital and picked up an infection, the course of antibiotics she was given seemed to speed up the lurking hydrocephalus in her brain. In March 2018 she was rushed to Addenbrookes for emergency surgery to fit a reservoir into her skull to drain the fluid. Five days later this hadn't worked so back we went for a full VP shunt to be fitted - 2 major brain surgeries within 10 days. To top it off the tumour had grown again.
In June 2018 it was decided that Maisie should start a course of chemotherapy which she did, every week for 18 months! This finished in November 2019 and so far the scans have shown that the tumour has remained stable. Maisie is making some excellent progress with her movements and is currently managing to do 6 hours a day off her ventilator. Maisie is also home schooled and recently completed a mock exam in GSCE maths which is her favourite subject. We were offered a place at a rehabilitation centre this year but unfortunately due to COVID-19 this has been postponed until next year. During all of this Maisie has continued to inspire people with her courage, determination and sheer awesomeness. She's not only fighting her own battle but helping me to raise awareness for other parents and supporting people going through similar times. The biggest thing however is her beautiful smile. Yes there have been dark times and difficult conversations that no parent should ever have to have with their child but she takes it and together we deal with it because we are Team Awesome and together we will beat this!
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(Quilt Completed)
