In 2020, James was just 8 years old when he was diagnosed with medulloblastoma. His mum, Emma, tells their story…
“I noticed he wasn’t really himself, he kept getting poorly, and we took him to the GP and multiple hospitals but kept getting dismissed. He was showing all the common signs of a brain tumour, although we didn’t know it at the time. He was off balance, being sick a lot, getting headaches and sleeping a lot. A month before he was diagnosed, he got sepsis and was on the point of his whole body shutting down. It was terrifying. It wasn’t until his paediatrician pushed for an emergency MRI scan, that on 4th September 2020, he was diagnosed with medulloblastoma. I remember it like it was yesterday.
It was like the floor had been taken from under me; it was absolutely devastating. You know these things happen, but you never think it’s going to happen to one of your own. We were so shocked, especially because it had taken so long to get an answer.
That night, we were blue-lighted straight to Leeds General Infirmary from Bradford, and the following day, he had a nine-hour operation to remove the tumour. We had no time to process it and it’s a huge thing to face. They managed to remove 95% of it, but it had spread to different parts of his spine, which they couldn’t reach. He had to have radiotherapy and chemotherapy after that, which went on for a year and a half. He had illnesses along the way; his line kept getting blocked and he’d get sick from that, and they’d have to replace it.
It was still the height of COVID, which made things even tougher. Only one person could be with him, which was really challenging, and between my mum and me, we struggled massively. It had a huge impact, emotionally, practically, financially, physically, psychologically and mentally. It all added up.
In hospital, we met one of the Candlelighters Family Support Workers, and she was so lovely. She explained what the charity does and what they could support us with. We’d already been through so much and we had no idea what was going to happen next. The fear of the unknown is awful. So then, to be told that there’s this amazing, fantastic charity that was there to help us, we were so grateful. We truly appreciated that support at such a difficult time.
The days in hospital are so long – they feel like they’re never-ending. We were in for about four months, and you just can’t think of anything worse. Having staff from Candlelighters on the ward to chat to really helped, though.
They helped us with so many things. They gave grants which helped with travel costs, getting to and from the hospital. We had to put our lives on hold, and my mum gave up work to help care for James. It really takes its toll financially. The costs all add up, especially petrol and food. The grants from Candlelighters helped massively and without them, we would have struggled.
They gave us a holiday too, which was amazing. It gave us time to relax and get away from all the stress we’d been facing. We had such a great time, it was brilliant, although we did sadly have to cut it short as James got poorly. We’ve been to events hosted by Candlelighters, like the Christmas party, which was really magical. James absolutely loved it and it really makes a difference being able to do things together that are positive and fun and being able to make happier memories away from treatment.
Due to the surgery to remove the tumour, James ended up with something called Posterior Fossa Syndrome which is a complex neurological condition that can affect speech, balance, cognition, emotions and motor skills. It still affects him to this day. We had support from another brilliant charity too, called The Danny Green Fund, who provide support for children affected by Posterior Fossa Syndrome, from physiotherapy to adaptive equipment.
James is living with the long-term impacts now, which will be lifelong. He’s on 10 different medications for the rest of his life. He has Addison’s disease and uncontrolled epilepsy. We’ve tried so many different medications to control the epilepsy, but nothing has worked, so now we’re exploring the option of surgery. Post-treatment has been a whole other journey to go on. Before, he was a happy, ordinary boy who could walk and talk. Now, he struggles with his speech and uses a wheelchair full-time. His hair still hasn’t grown back. It’s been really tough, and people often don’t realise that the impacts can remain long after. It’s like being given a completely different child back after treatment and you have to live with and adapt to that change.
Without the help and support of Candlelighters, we wouldn’t have been able to cope and manage as well as we did. It was the scariest, darkest time of our lives, and they gave us support when we needed it most. You can’t think of anything worse than to be told your child has cancer. Knowing that Candlelighters were there whenever we needed was a real comfort.
I’m a big believer that if someone goes out of their way to help and support you, it’s nice to give back. I’m due to take part in Brave the Shave to raise funds for Candlelighters, Macmillan, and The Danny Green Fund.
And, I’d like to open people’s eyes to what actually happens to families when their child is diagnosed with cancer and share our story to raise awareness. People should learn the signs and symptoms to hopefully help spot them early and get treatment quicker.”
Thank you so much to Emma for sharing her family’s story and helping to raise awareness of the impacts of childhood cancer.
If you’d like to support children with cancer and their families across Yorkshire, you can donate to Candlelighters here.
