Childhood Cancer Awareness Month: Worthing family shares how Young Lives vs Cancer helped with the difficult conversations when their son was diagnosed with cancer

The charity Young Lives vs Cancer was 'a complete life-saver', offering guidance and support all the way, and with its help, Chris and Nicki Knight have shared their story around the world to mark Childhood Cancer Awareness Month.

Louis Knight was diagnosed with non-Hodgkin's lymphoma in the midst of the Covid lockdown, so Chris and Nicki had to take it in turns to be with him during his seven cycles of chemotherapy at Southampton Children's Hospital.

He spent six months in hospital and sister Isabelle was able to see him for only three days during that time, when he was allowed home for Christmas in December 2020.

It was a distressing time for the whole family but Louis is now a cancer survivor and at four, he has just started school. Chris and Nicki hope that by sharing their story, it will highlight the many tough conversations children with cancer and their families face.

Signs of Louis’ illness first emerged when he began to rub his eye and complain of pain, before developing a squint a few days later. A CT scan confirmed there was something behind the eye and Louis was referred to Southampton.

Chris said: "They did MRIs and said they didn’t need a biopsy to confirm, they knew it was cancer and it was growing quite quickly, the size of an apricot."

One of the hardest conversations was explaining the diagnosis to their daughter, who was six at the time. Chris and Nicki did not know how much information to give, so they did not say much in the first few weeks.

Chris said: "We knew at some point we needed to explain it because he was going to be in hospital for quite a while and we needed to explain to her without lying what it was. One of the first things we did was we went on the internet and looked at how you’re supposed to explain it to a six-year-old and there was all sorts of stuff on there, like you need to tell them it’s not their fault, and it’s not catching and all sorts that you just wouldn’t think of.

"We took her out and we bought Louis and her a toy, had a McDonald’s, made sure I told her in the afternoon and not before bed and basically read through a script and explained what it was, made sure I explained it was cancer, explained about chemo what it would do to him in terms of losing hair.

"Emily, our Young Lives vs Cancer social worker, was a complete life-saver. She recommended a special book that explained cancer to children, which we bought immediately and read with Isabelle. It was great! Lovely illustrations and really well written – we'd never have found it ourselves. Just knowing someone was there who knew what you were thinking and made you feel normal was so reassuring.”

Young Lives vs Cancer is the UK’s leading charity for children and young people with cancer and during Childhood Cancer Awareness Month in September, the charity highlighted the many difficult conversations parents and carers have to have when a child is diagnosed, and how their social workers are there to support families through it.

Rachel Kirby-Rider, chief executive, said: “It’s hard to even imagine the conversations that children with cancer and their families like Louis’ are having day in day out. Our social workers help them face those conversations. They tailor their support for each family, they can provide a safe space if a parent needs to talk about their worst fears, give a parent a children’s story book to explain treatment to a young child or their sibling, or have a difficult conversation on behalf of a family.

"Childhood Cancer Awareness Month is an opportunity for all of us to listen to the experiences of children with cancer and their families, and show our support. I also want to say a huge thank you to our amazing supporters fundraising and volunteering for us throughout Childhood Cancer Awareness Month. Their incredible effects mean we’re able to be there for families like Louis.”