‘It was like a bad dream’: Family raising awareness of childhood cancer after son’s diagnosis

A Wakefield family are sharing their experiences of childhood cancer during Childhood Cancer Awareness Month, highlighting the need for support from charities like Candlelighters.

Rohan was just five months old in 2023 when mum, Penny, noticed several small, solid lumps on his head. After hospital checks and an urgent late-night call, Penny and dad Warren were told to get to Leeds General Infirmary as fast as possible.

There, the family received the news that Rohan had acute myeloid leukaemia, an aggressive form of blood cancer which had spread into his spinal fluid. He’d had no other symptoms, and Penny recalls he was “really well in himself”.

Rohan began chemotherapy four days later, and Penny remained in hospital with him for most of the next six and a half months, while Warren continued working and travelling between the ward and home. The wider family helped care for Rohan’s siblings while life as the family knew it was turned upside down.

Penny says, “The first time you come onto the ward, it’s a shock. It’s daunting and traumatic to see so many poorly children before it becomes normal to you. You never think this is going to happen to your child.”

From not presenting as poorly, Rohan quickly became very ill. He suffered badly from mucositis – a side effect of treatment causing mouth ulcers so severe he couldn’t feed and requiring a food replacement to be delivered through his bloodstream. He had four full months of chemotherapy, thankfully responding well to the treatment and entering remission.

Throughout their journey, the charity Candlelighters supported the family, helping to ease the emotional, practical and financial impacts wherever possible. Candlelighters staff spent time with Rohan so Penny could take short breaks to get food and drink and look after herself.

The pair also spent time in the Pavilion every day – a multipurpose building funded by Candlelighters in the hospital grounds. Penny described it as a "haven" that provided a calm, homely space away from the noise and busyness of the ward, allowing her to spend quiet time with Rohan.

Candlelighters also fund pioneering research through the Candlelighters Supportive Care Research Centre, looking at how to reduce traumatic side effects like the mucositis that Rohan suffered.

Penny says, “There’s nothing I or anybody could say that could prepare anybody for the journey of dealing with childhood cancer. Even the people closest to you who love you can’t truly understand like other people who have been on the same journey.”

After finishing treatment, Rohan continued to be monitored heavily, returning for regular bone marrow checks done under general anaesthetic, causing extra stress and scarring each time. He’s struggled with a fear of doctors, which has made checkups more difficult.

Despite everything he has been through, Penny says, “If you met Rohan now, you’d have no idea he was ever ill. He speaks with a thick Yorkshire accent, and he’s been riding a bike since he was two.”

Penny continues: “I carried guilt for a long time that we got out of this, but some other families didn’t. In that first year, three children that we’d lived with on the ward had passed. It was so close to home – we were part of their journey, and they were part of ours. Things like that sat quite hard on me afterwards.”

As Childhood Cancer Awareness Month draws to a close, Candlelighters is urging people to continue raising awareness and supporting children with cancer.

Emily Wragg, Candlelighters CEO, says, “September is an important month for the international childhood cancer community, but the reality for families is that they often face many months or even years of treatment. It’s important that they get the right support to help them through this long and challenging journey, which is what we aim to provide for families in Yorkshire.” To find out more about how you can support families facing childhood cancer, visit www.candlelighters.org.uk.