Grace’s Story

In April 2017, just before I was due to take my SATs, I noticed that I was struggling to read the interactive white board in class. That was the start of eye test, bad headaches, hospital appointments, MRI scans and then finally the news in Dorchester County Hospital that I had a brain tumour. This was such shattering news to me and of course to my family.

I was sent to Southampton Hospital and immediately had to go for chemotherapy. The first session of chemo signalled 70 weeks of treatment! This included steroids; every time I came to the end of a ten day course, I became sick - and so the neurologists decided to fit me with a shunt to relieve the fluid pressure in my brain. We were so grateful that this worked, as it meant I did not have to actually stay in hospital after that.

MRI scans every three months showed at one stage that the tumour was growing, and also that there was a narrowing of some blood vessels in my brain. I have to take aspirin daily in order to avoid having a stroke. I alternated between Southampton and Dorchester hospitals for my chemotherapy. And then on December 12th 2017, my third MRI scan showed the brilliant news that my tumour was shrinking! My Mum and I squealed with delight – it was the best Christmas present ever!
My condition is genetic and is called NF1 and sadly it could return in my teenage years.

I have been going to Piam Brown Ward in Southampton since my diagnosis and they have been amazing. My life has changed so much in this time. I have to be careful with exercise as I get tired so easily, and I am not allowed to do any contact sports.

I started secondary school in September 2017, and have missed many lessons due to my condition. The school is very supportive, though, and not all my friends even know that I have been poorly and they treat me just like everybody else, which is something I really like.

Thank you for reading my story.

From Grace