About

Hello my lovelies!

My name is Lily and I’m fifteen years old from Hampshire in the United Kingdom. Following a difficult few years of weight gain and delayed puberty I was referred for an MRI scan at Southampton General Hospital, and on 4th December 2015 I was diagnosed with a rare benign brain tumour on my pituitary gland called a Craniopharyngioma. It was the size of a golf ball and I have had it since birth.

On 8th December, I underwent a five and a half hour surgery to remove as much of the tumour as possible. Due to the nature of the tumour, my surgeon was unable to remove all of it, but it was reduced in size dramatically. After spending two and a half weeks in hospital, I was allowed home on Christmas Eve!

Whilst in hospital, the doctors had mentioned that I would need follow-up radiation treatment to reduce the risk of my tumour re-growing. After a five week referral process, on February 15th 2016, I left the UK with my family to go to Jacksonville, Florida, where I was lucky enough to receive Proton Radiation Therapy at the UF Health Proton Centre. I stayed there for nine weeks to take part in a six week course of treatment, and once I had finished, we reluctantly headed back to the UK.

The fabulous Dr Danny from the UF Health Proton Centre

Two months on, I have had my first MRI since returning from Jacksonville, and my tumour has shrunk already! It’s still early days for me, but I’m positive that the only was is up from here!