On Tuesday October 4th 2022, we received the devastating news that our eldest son Cameron (3y) had a very large brain tumour. He was rushed to Great Ormond Street Hospital and readied for surgery. MRI showed that the tumour was up to 13cm diameter in some places, and the increased pressure inside Cameron's head meant surgery was required ASAP.

An amazing team of doctor's and nurses on the HDU (High Dependency Unit) at Great Ormond Street Hospital took great care of Cameron (and his terrified parents) whilst he awaited surgery. His surgeon Dr Owase Jeelani, who does truly inspirational work, talked us through his MRI, and explained how they planned to remove the full tumour during a 7-8 hour surgery. Thankfully, the surgery was a success, and the tumour was completely removed and sent for biopsy.

Once the tumour tissue had been studied, Cameron was officially diagnosed with Embryonal Tumour with Multilayered Rosettes (ETMR - link below for more details).

https://en.wikipedia.org/wiki/Embryonal_tumour_with_multilayered_rosettes

ETMR is a very rare and very aggressive type of brain cancer (EHO Grade 4), that is typically diagnosed in children aged 1-3. Unfortunately the prognosis for children with ETMR is not good and because there are so few cases, there is no standard treatment protocol.

The team at GOSH, led by Cameron's oncologist, Dr Szychot met with specialists nationally and in the US and Canada to determine the best course of treatment to give him the best chance of survival. This was 6 weeks of daily radiotherapy under general anaesthetic, followed by chemotherapy.

Unfortunately, in January 2023 we learned that Cameron's cancer had already returned and had spread to new areas of the brain. It was growing fast and the chemotherapy did little to slow the growth.

Cameron passed away peacefully in my arms on April 3rd 2023 at Great Ormond Street Hospital.

Young Lives vs Cancer were on hand to support us from the day Cameron was diagnosed and still are to this day. Kathryn from Young Lives was there for us, whether it was just to talk through how we were coping, or for practical things like arranging a blue badge for Cameron so we didn't have a long walk to get to his appointments.

We have been fortunate to be surrounded by and supported by good people - friends, family, employers, neighbours, charities and NHS staff. Every kindness shown to us throughout Cameron's treatment, meant we could focus all of our energy and love on him. Making sure that despite all that he went through in those 6 months, he still had a smile on his face every single day. We wouldn't have been able to do that if we didn't have the support we had, which we will be forever be grateful for.

Loosing Cameron has been completely devastating for our family. But we are commited to raising as much money for Young Lives vs Cancer as possible, so that their good work can continue. Because we know how much it will mean to the young people and families that need it.

To find out more visit www.younglivesvscancer.org.uk