Charlotte Hillyard’s daughter, Jess, was diagnosed with a brain tumour in May 2023 aged three. Knowing the importance of peer-to-peer support, Charlotte and her husband, Lee, set up Walking Warriors Essex earlier this year to bring together families of children with cancer to share their feelings and experiences.
Our journey into childhood cancer was very fast. When Jess first presented with symptoms, we were blue-lighted to our local hospital and then to Great Ormond Street Hospital that same day. Jess underwent emergency surgery 48 hours post-seizure, and we were thrilled to hear the tumour was successfully removed. Following testing of the tumour, she was diagnosed with atypical teratoid rhabdoid tumour (ATRT), which was localised to her head. Her treatment consisted of nine cycles of chemotherapy and six weeks of proton beam therapy. She finished treatment last November, and we were thrilled to see her ring the bell in December.
When Jess, now four, first began treatment, we were told that this is a “marathon not a sprint”. For us, getting through the marathon was helped enormously by talking to other parents. It can feel so incredibly lonely finding yourself in the world of childhood cancer, leaving your old life and witnessing the trauma you’re putting your child through to save their life. However, we found that meeting like-minded parents on the wards, in the kitchens and waiting areas was invaluable in ‘debriefing’ from the day. Those shared experiences helped us form the idea of Walking Warriors Essex. We wanted to set up a peer-to-peer support group to provide a safe space for people to share their personal stories of how childhood cancer has affected them.
Our mission
We want to help unite families by arranging monthly walks and events around parks in Essex. Our growing community is full of parents, grandparents, brothers, sisters and caregivers who just ‘get it’. It’s an outlet to help normalise and validate feelings and, in turn, reduce isolation. It can be so easy to just wear a mask each day and hide how you really feel. Our support group provides a safe space where people can speak freely about their journey, without fear of judgement, and where everyone’s experiences are treated as equally important.
Navigating life post-treatment can feel incredibly hard. At the start of Jess’ diagnosis, we wished a lot for our old life back. A life that was seemingly carefree, without childhood cancer. However, over time, by talking to other families and coming to terms with a ‘new normal’, we were able to find a form of acceptance, which in turn shifted some of that weight. Although life is different, we personally feel we know the value of each day now. We can’t change what’s happened to us, but we can choose how we move forward and for us that means fundraising via our support group and ensuring that we lean on people.
People really are the answer. We hope our support group provides that avenue for others, to help them navigate their own new normal.
From Contact magazine issue 104 | Autumn 2024
