“You have to look for the good things or you will fall apart”: how families face childhood cancer together

This is a non-independent article produced as part of a commercial deal with Guardian Labs and originally published on the Guardian website.

There are around 4,200 new cases of cancer in children and young people each year in the UK. That’s 12 families a day whose lives are changed for ever. When a young person is diagnosed with cancer, their loved ones’ lives are upended too, from the emotional turmoil to the practicalities of work. However, the pain of a diagnosis often brings families together to get through their darkest moments.

“We had to work as a team to overcome all of the obstacles”

Alice Lilley, from south-east England, is the Mum of Jasper, 12, who was diagnosed with a brain tumour called a medulloblastoma aged five.

While Jasper was getting treatment, me and my husband, Darren, were never at home together as one of us was always at the hospital with him. We missed simple things like family mealtimes, because even when Jasper was at home he felt too unwell to eat and couldn’t bear the smell of food cooking. 

It was a very daunting time: always waiting for the next operation or procedure, coping with the side effects of chemotherapy and radiotherapy, and trying to keep life as normal as possible so that Jasper could still enjoy some aspects of childhood.

“We are a strong unit” 

Dawn Collins, from Hampshire, is Mum of Teiva, 13, who was diagnosed with acute lymphoblastic leukaemia in May 2019 aged nine.

Teiva’s diagnosis turned our world upside down and it hasn’t been the same since. I feel she has missed so much, and that we have missed so much as a family. We didn’t want our older children to feel neglected, and we did our best to make sure they felt supported in what they were doing. I had to stop working, too, which had massive financial implications. 

Teiva has recovered from the cancer, but her body is still struggling. She is still having so many side-effects from treatment. She is on steroids for adrenal gland problems, and has experienced leg pain, gastrological issues, constant nausea and regular headaches. People think things would be back to normal when the chemo finished but she still feels so poorly most days, and we still have different hospital appointments all the time. 

“Life is fragile and you must look after the people who are with you” 

Carolyne Rogan, from County Down, Northern Ireland, is Grandmother to Michael, who was diagnosed with rhabdomyosarcoma in July 2020 at 11 months old.

I was so worried for Michael. There was this feeling of helplessness – regardless of what we do, we may not be able to make this OK. I thought a lot about his mum, my daughter, Anna – it was a lot of time in a room alone for her and for her husband, Chris, and that was hard. During this time, my granddaughter Ellie started university and Chris’s mum and I stayed with Michael in hospital for that weekend when Anna went away – being in that hospital room gave us a real sense of what Anna and Chris were going through. 

I could see when Anna was low, when she spoke more quietly and there was nothing I could do. People have to go through all those emotions – fear, hope, anger. You just have to be there for them. 

“We will love and miss her for ever”

Katie Evans, Somerset, is Mum of Adeline, who was diagnosed in November 2020 with a brain tumour called an ependymoma at three months old. Adeline died in 2022.

Adeline was so young, and just didn’t know any different. She always kept a smile on her face and kept everyone around her strong with her fierce attitude. 

I was hands on with her care – the nurses administered the chemotherapy but I was changing dressings and up in the night. It is completely exhausting but somehow you find the will to keep going. 

We were staying with my parents at the time and everyone helped – it was a team effort. But even when we were there, we were too scared to go out sometimes due to her needing rest, or for fear of infection. 

“The emotional strain is difficult to put into words”

Neil Ranasinghe, London, is Dad of Anne, who was diagnosed with acute lymphoblastic leukaemia aged three. Anne is now 23.

After Anne was diagnosed, it was difficult as we also had a one-year-old daughter, Eve, and the hospital was about an hour away by public transport. I had just started a new job but they were supportive and gave me time off for hospital visits. 

Whenever we took Anne to hospital, my mum and stepdad would drive 14 miles to ours to look after Eve. My sister also helped. This experience definitely brought the family closer together, although there was a lot of worry involved. 

The emotional strain is difficult to put into words. Months if not years of worry, trying to act normal, trying to bring up Anne the same as any other child wasn’t easy.