Ryan's story

“Ryan was diagnosed with stage 4 high risk neuroblastoma on 26th October 2009, when he was three years old. He was given less than 5% chance of surviving until Christmas. Today, Ryan is a happy 13 year old. I hope that sharing our positive story goes a long way in giving other families hope.” His mum Lisa shares their story.

Ryan was diagnosed with neuroblastoma in 2009

Ryan relapsed in 2011 and needed further treatment and surgery.

Ryan relapsed in 2011 and needed further treatment and surgery.

“Ryan came home from nursery one day complaining of stomach pains, after a tumble in the playground. He would’t eat and the pain got worse, so I took him to A&E that night. We were sent home as the doctors thought it was constipation or trapped wind.

“Two days later, he had a high temperature, was in extreme pain and, worryingly, he couldn’t move his legs. We took him back to A&E where I asked to speak to a senior trauma doctor.

“They did an immediate MRI scan and found a tumour wrapped around Ryan’s spine. We were told that Ryan could have less than two months to live, and he might not see Christmas.

Remission and relapse

They did an immediate MRI scan and found a tumour wrapped around Ryan’s spine. We were told that Ryan could have less than two months to live, and he might not see Christmas.

“Ryan was initially diagnosed in South Africa where he under went chemotherapy and surgery to remove the majority of the tumours. Shortly before we moved to the UK in October 2010, we were told Ryan was miraculously in remission.

“But I had a feeling - a mother’s intuition - that Ryan wasn’t in the clear. In 2011, after a check up at the hospital in England, a professor rang to tell me that they’d found another tumour in his chest and was in a worse situation than we’d known. Even our consultant said it was the worst case that she’d ever seen.

“Our little man received further treatment which included chemotherapy, radiotherapy and stem cell transplant as well as surgery. He also needed ribs removed during this procedure as the cancerous tumours had wrapped around his little bones. By March 2012, the only tumour left in his body was a growth behind his heart.

“In October 2013, the heart tumour no longer appeared on his scans.

Long-terms effects of Ryan’s treatment

Ryan is always happy and smiling…you’d never know he’d ever been unwell.

Ryan is always happy and smiling…you’d never know he’d ever been unwell.

“Ryan has a number of life-long health conditions from his treatment including vision, hearing and speech impairments. He also has cognitive difficulties and is socially vulnerable. But he has support in school and an SEN plan in place so these are challenge he can overcome. He also has half a left lung and severe scoliosis (curvature of the spine).

“My son is my hero, my warrior, my survivor and my inspiration. He is always happy and smiling and other than his spine, you wouldn’t know he’d ever been unwell. We don’t know what the future will hold, but he beat neuroblastoma twice, against all the odds. If it wasn’t for that blow to the tummy, we would never have known he had cancer.

“More funding is needed to do more intensive research to help children like Ryan get a diagnosis more quickly. Our children are our future and we need to invest in research to help them. I hope that sharing our positive story goes a long way in giving other families hope.”

Helpful resources

If your child has been diagnosed with neuroblastoma, please visit our ‘Families’ section for more information.

We have also produced a Parent’s Booklet. The booklet is designed for parents and carers of a child who has been diagnosed with neuroblastoma. There is information about neuroblastoma, the treatments that are used and their possible side effects. It also discusses how a cancer diagnosis can affect you, your child and the rest of the family.