On 10th of February 2016, I received a call to say that our daughter Charlie had collapsed in school and couldn’t remember what had happened, Charlie was taken to a local hospital, to then be transferred buy blue lights through the night to a local children’s hospital, which she had fluid removed from her brain.
On the 11th of February 2016 we were called into a little room with two doctors and a Macmillan nurse to be told our 11-year-old daughter had a brain tumour, and was showed a scan on a screen, we asked what our treatment options.
We were told to go home and make memories as your daughter had something called Diffuse Midline Glioma, and has between 6/9 months to live, she could have radiotherapy which could prolong it a few more weeks.
Charlie had 14 days intense radiotherapy, I put her on an organic green diet cut out sugar and used Cannabis oil. Charlie had quality of life, we had our ups and downs where she would get really sick and need to spend some time in hospital or need steroids. Sometimes she would get a bad smell in her nose then she would have absences where she would just stair in to space and lose control of her face and drool.
The last couple of months Charlie started to put on a lot of weight due to steroids and needed to use a wheelchair, and started sleeping a lot and getting more head aches and absences. There were a few times when we thought this is it, but she came through it.
On the 3rd August 2017 Charlie had tea as normal, but as the night went on she was throwing up all through the night, the next day the 4th of August she had massive pain in her head and never really opened her eyes that day she just groaned with the pain.
The palliative team came out and said that she would pass that day.Charlie continued to have bad pain, seizures, rapid heartbeat, and passed away that evening.
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