Johnny Agnew, 40, from Spittalfield, along with a group of 10 others, is running in support of his nine-year-old son, Kit, who finished treatment for Wilms tumour for the second time at the start of July.
Kit was diagnosed with the kidney cancer in February 2025 aged eight, after Johnny, and Kit’s mum Alice, first noticed something wasn’t right shortly after Christmas 2024.
Johnny said:
The first signs we noticed were blood in his urine. That's an alarming thing for a parent, but you don’t immediately think it’s cancer. We went to the GP, who said it was an infection, but then we noticed he was losing weight and he was already quite a little guy. Then, soon after, we noticed he had a puffy tummy and shockingly quickly after that you could actually see it [the tumour] sticking out his tummy. Wilms Tumour is very fast growing. It was enormous by the time we worked out what was going on and he started his treatment. When he had an MRI scan you could see the tumour taking up nearly half of his abdomen and squishing other parts of his body, which was quite shocking. It was about 17cm in length which is obviously enormous in a small person. The whole experience was awful.
Kit needed immediate chemotherapy, which was followed by surgery and more chemo, and spent most of his first six weeks of treatment in hospital. Despite finishing this first-line treatment last October, he relapsed in January.
He began a new course of treatment involving stronger chemotherapy, longer hospital stays, a stem cell transplant and radiotherapy, which finished on 9 July.
Kit will now undergo regular scans and tests to check for any remaining cancer, while he’ll also need lifelong heart, liver and kidney health checks due to the toxicity of treatment.
This, Johnny explained, brings with it more challenges and uncertainty: “There's huge relief in getting through treatment, but this next stage of post-treatment scans is a scary period. We've already been through one round of treatment and finding out his cancer never really went away was horrendous.
“When you go through treatment, you've got a plan and you're following it the best you can. Now we’re into uncharted territory, and you can't really plan for the future at all.
“Scan dates are nerve-wracking experiences and in between them, we’ve just got to try and keep on going.”
Amid the ongoing challenges his family are facing, Johnny wants to bring people together for the half marathon on 16 August to show Kit that people are there for him.
He said: “Kit knows people are championing him and flying his flag. He really likes it.
“I think people are just really keen to be able to do something, to be able to contribute a bit and show they care. “There's not always a whole lot people can do [for families of children with cancer], so it’s great to have a way people can take part.
“I really believe that having community support and knowing that people are there for you plays a big part in getting through cancer. If we can all rally behind Kit and show him that we care for him then he has a better chance of being cured.”
Johnny and friends are taking on the East Lothian race to raise funds for Kit’s Fund, a Special Named Fund at CCLG: The Children & Young People’s Cancer Association.
CCLG’s Special Named Fund programme allows families to raise funds in honour of a loved one, while choosing where those funds go. Johnny explained that for his family, this meant being able to fundraise for research into finding kinder, more effective treatments for Wilms tumour specifically.
Johnny said: “CCLG is a charity that’s really flying the flag for children and young people with cancer.
“It’s super to be able to specify that you'd like the funds to go directly towards Wilms tumour research, towards improving survival rates and reducing side effects of Wilms.
“It’s a big thing for us, to be able to fundraise for kinder treatments for Wilms. It's got a good cure rate, but the number of children that it doesn't work for, or it creates long-term problems, is still significant.”
Despite all Kit’s been through, Johnny described his son as “a total happy-go-lucky super trooper”, who hopes to be able to return to school for the new school year in August.
Johnny added: “Kit’s got such a positive approach to life. His resilience and his attitude throughout all this has been amazing.
“He’s handled all of it way better than I imagined. I’m very proud of him.”
With Johnny and Kit’s Super Runners having already raised almost £5,000, he urged people to donate to help children, like Kit, who are diagnosed with Wilms in the future.
Johnny said: “It's been a good start and we’re now just asking for a little support for something that everyone can get behind in the community
“Obviously, it’s a very personal cause for us, but this money would go toward treating children in the future and I think that belongs to everyone.
“Childhood cancer is something that doesn't make sense, and it's exactly the sort of thing that you think would never happen to you. But it does happen, and that could be to anybody.
“So, it's really something that the community and the wider population can get behind, to help improve survival of kids with cancer and help families get through difficult times.”
Donate to Johnny and the team’s fundraising on JustGiving.