Charolette Reid, 17, of Sidmouth Devon, had her life turned ‘upside down’ after having innovative proton beam therapy in Florida.
The treatment which was funded by NHS was given to the girl after doctors diagnosed her with the 3cm tumor that was also affecting her vision.
Her debilitating headaches started when she was just three years old. But as she grew older, they became worse and would leave her in severe pain that could last for weeks as a time.
While over the counter medication has no effect on the girl, her mother Angie, speaking about the treatment said, “'Her life has been turned upside down by the side effects, which are huge and life-changing. 'She never looks forward to things, because she doesn't remember they are going to happen. She doesn't remember if she has had a nice treat. It's quite difficult for me as a mum. I spend a lot of time answering questions for her.”
She goes on to add that Charolette remembers everything before the treatment but everything since is almost gone.
Charlotte was first diagnosed with craniopharyngioma - a rare benign brain tumour that grows just above the pituitary gland in July 2015.
She had been suffering with headaches for years and, despite repeated trips to the GP, they did not identify the cause.
Doctors, and her parents, assumed Charlotte's headaches were stress-related, as a result of her SATS and dance exams.
But the turning point came after a visit to the optician in July 2015 after Charlotte struggled to see anything.
Referred to Bristol Children's Hospital, doctors found a mass on Charlotte's brain and a biopsy two days later revealed it was a craniopharyngioma.
Although the 3cm tumour was benign, the position meant surgeons could not operate safely.
Her only option was proton beam radiotherapy, but as the treatment was not available in the UK, she and her parents were flown to Florida for it through the NHS.
While conventional radiotherapy uses high energy beams of radiation to destroy cancerous cells, the surrounding tissue can also be damaged.
Proton beam therapy uses beams of protons (subatomic particles) to achieve the same cell-killing effect.
A 'particle accelerator' speeds up the protons and these accelerated protons are then beamed into cancerous cells, killing them.
Unlike conventional radiotherapy, in proton beam therapy, the beam stops once it 'hits' the cancerous cells, causing far less damage to surrounding tissue.
After nine weeks in the US, Charlotte and her parents returned home, with everything, at first, looking positive.
'Initially, she seemed to be okay, but by the December 2015, she started to show signs of confusion and major fatigue.'
She continued: 'The tumour is stable. The proton did its job. It's reduced in size very slightly. We know it won't ever go away completely.
Although the family continue to work with the hospital, they don't know what the future holds for Charlotte.
