Our late son inspired our charity fundraising events
Through their different charity fundraising events, Paul and his family have raised over £150,000 for Teenage Cancer Trust. Paul’s son Jamie died in 2012 shortly before his local Teenage Cancer Trust unit opened. Since then, his family have worked hard to pay tribute to him by raising money for other young people going through cancer. Paul shared the family’s story with us.
Jamie’s diagnosis
My son Jamie was at Sheffield University. We’ve a close family and spoke regularly on the phone. One day when he was in his second year, Jamie called and said that his leg hurt. He said that he’d been out drinking the night before and thought that he might have fallen over, but he couldn’t remember doing it. He also played rugby and football at university so he thought it might be a sports injury.
He went to the nurse to get painkillers, but the pain kept getting worse, so he went to the GP. He was referred to a fracture clinic to rule out fractures and he had an X-Ray and some scans.
It escalated from there and he was diagnosed with Rhabdomyosarcoma. He was young, fit and healthy, so we were all in shock. We were told that he would need an operation on his leg. They said they’d need to get a big enough margin to make sure they had taken away all of the cancer cells, but they also said that he might not be able to walk.
The surgeon was pleased that he got it all and Jamie walked out of the hospital after a successful operation. Unfortunately, scans showed that the cancer was too virulent and had moved to his lymph nodes.
Treatment and the adult ward
Jamie started treatment at the Leicester Royal Infirmary on an adult ward. He was 20 and was surrounded by people who were a lot older than him and very ill. There were around eight in the ward.
During the day it wasn’t too bad but during the night it was more upsetting for him. One chap died from lung cancer in the night. It was quite loud and it traumatized Jamie. After that, the staff tried to put Jamie and another lad, who was a bit older than him, into a side room with a couple of beds, but it wasn’t always possible. They struck up a friendship and the staff tried to coordinate their treatments.
We were told that Teenage Cancer Trust were developing a special unit which was designed with 13–24-year-olds in mind. It wasn’t ready when Jamie was having treatment, but they decided to move him to the children’s ward and road test the ethos of a Teenage Cancer Trust unit on him.
Teenage Cancer Trust and Youth Support Coordinator Faye
The new approach was like night and day compared to the adult ward. This included allowing him to have a room of his own and permitting visitors at any time, rather than just during the strict visiting hours of an adult unit. He was also visited by the new Teenage Cancer Trust Youth Support Coordinator, Faye.
The staff on the adult unit were nice, but they were used to working with older patients and they didn’t know how to talk to a young adult. Faye was brilliant in comparison as she was better equipped to work with him. She’d sit and have a chat with him or spend time, something the staff were too busy to do on the adult wards.
Faye also brought Jamie little treats to cheer him up, so much so that we started to call her ‘Freebie Faye’. She brought magazines and games, and it would brighten his day and be a bit of a distraction. She was really nice and helpful.
Jamie felt sad that the unit wasn’t there for him, but we were really behind them developing the Teenage Cancer Trust unit as it was the flip side of the coin.
Why we raise money for Teenage Cancer Trust
Jamie was meant to finish treatment around Christmas 2011, but his treatment wasn’t working out for him. He was moved to Loros and sadly died on April 30th, 2012.
The unit opened shortly afterwards. We were invited to look around and it was fantastic. It was a little sad for us to see it as that’s what Jamie could have had. There were DVDs, games and Wi-Fi, all things that are essential for young people. On the Teenage Cancer Trust unit, they can also go through treatment in an environment that is empathetic to their needs and with staff that understand their concerns. I know that kind of support could carry a young person through.
We decided to start raising money for Teenage Cancer Trust so that a young person going through cancer could be on a unit which Jamie would have really benefited from. Having treatment without that support is so much harder.
Our charity fundraising events
Our first fundraising event was a black-tie dinner at The Tigers rugby ground in Leicester and if we didn’t get a certain number of guests, we would have lost money, but we had 900 guests. It was the largest sit-down event they’d held there at that time. Chris Edwards from Kasabian was at the event, and he has been supporting our events ever since.
We have held a cricket match and a quiz in 2023, and a group of Jamie’s friends and his sister Emma ran the London Landmarks Half Marathon. We have also held a number of fundraising events. So far, we have raised over £150,000 for Teenage Cancer Trust.
We were invited to a reception at Royal Albert Hall to hear more about the work Teenage Cancer Trust do and to celebrate our fundraising. We then watched Kasabian perform and it was funny to think that we’d come all the way from Leicester to the Royal Albert Hall to see a local band and that I knew some of the members.
At the reception, I got talking to a father whose son had also died of a Rhabdomyosarcoma. As parents of a young person who has died, we are part of an exclusive club that we don’t want to be members of. Friends are sympathetic, but they cannot understand. I’ve spoken to him a few times since and it really helped me, and I hope it helped him as it gives us the opportunity to speak about things which other people don’t have experience of. I think there needs to be more support for bereaved parents.
I worked as a chartered surveyor and one day I was waiting to go into a meeting when I saw a map of a new housing estate. I thought that every road on the estate would need a street name. I wanted one of the streets to be named after Jamie so that there would be a lasting legacy to him. Long after myself, my wife and Emma die, people will be getting taxis and asking to go to Jamie Marcus Way. That gives me some comfort. I would be happy to help advise other people on how to get a street named in someone’s memory. So, I started working towards making that happen. It took almost four years, however, in March 2019 we unveiled “Jamie Marcus Way” in Oadby, Leicestershire.