Rowan's Story

Rowan was diagnosed with a high grade glioma in October 2022. He had a few symptoms in the month or so before but nothing that made us worry too much. Some sickness and headaches with the odd day of tiredness.

He had just started secondary school so sort of put it down to possible anxiousness about that. But when we were on holiday his personality changed which made us worry.

The day after we got back from holiday I noticed his left eye turning inwards. I booked an eye test for a week or so later but he came back from school saying when he was playing football he could see two footballs. I called the opticians and managed to get him an appointment for the following morning. After that appointment was when it all got a bit hectic. They noticed swelling behind his eyes and sent us straight up the the eye clinic at our local hospital. He stayed in overnight ready for an MRI the next morning. He had his MRI about 11am and at approx 2.30pm we were called into a room and told they could see a mass on his brain.

We were then sent immediately to the Royal Hospital for Children and Young People in Edinburgh, about 2 hours away from us. He was admitted and had some other tests and scans the next day and went into surgery the day after. They only managed to get a biopsy due to the location of the tumour and how it was hard to tell between tumour and healthy brain, it was too dangerous to try and remove it.

Rowan made an amazing recovery from his surgery which was amazing to see. But 2 weeks later we had a meeting with his consultant which changed our lives forever. Our boy had brain cancer. He would need radiotherapy and chemotherapy which was to start straight away.

We live 2 hours away from his treating hospital so had many trips back and forth.
He started radiotherapy at the end of November and me and him stayed at a young lives vs cancer home from home for 6 weeks while he had the radiotherapy.
Rowan continued on cycles of chemotherapy until June 23 when his MRI showed some tumour progression.

Our consultant applied to a drug company to get immunotherapy on compassionate use through the NHS and he now has fortnightly infusions of this since August 23. He has had 3 MRI since starting immunotherapy and they have showed that it is keeping things stable. We will hopefully continue to have immunotherapy while it is doing its job.
Rowan has just recently started doing a few periods at school and is so happy to be back doing his football training. He plays for a local youth team and before his diagnosis won Player of the year. He takes bad as his stamina isn't what it used to be and tires easily due to his treatment. But it is so good to see him back doing what he loves ❤️ ⚽️

Thank you to Ben Saunders Foundation for this wonderful break in England.