Parents should 'trust gut instinct' on leukaemia

A mother whose son was told he may have mumps when he actually had leukaemia has said it is important for parents to be able to recognise the symptoms.

Jaxson Clark, from Tytherington, South Gloucestershire, was three years old when he became unwell in 2020 with lumps on his neck, a limp and constant nose bleeds.

His mum, Sophie Clark, got Jaxson referred to Bristol Children's Hospital, where he was correctly diagnosed with acute lymphoblastic leukaemia and had three years of treatment before being given the all-clear in February last year.

"My message is to trust your gut instinct as no one knows your child as well as you do, so keep pushing," Ms Clark said.

Ms Clark told BBC Radio Bristol she spoke to the hospital, explained his symptoms, and was told to bring him "straight in".

"His legs were alarming me a lot as he was moaning about a lot of leg pain, and I thought 'that's not normal, he's got a limp, it's clearly not normal'," she said.

Jaxson was ill during the Covid-19 pandemic and Ms Clark said she suspected it was unlikely to be mumps, partly because Jaxson had been unable to socialise, and he had also had the MMR (measles, mumps and rubella) vaccination.

"In my head, I was like 'no, it's not mumps, it can't be mumps'. We didn't even do the swab kit because it didn't arrive until four days later, and we'd already found out that it was leukaemia," she said.

Jaxson needed treatment lasting three-and-a-half years, which included chemotherapy, lumbar punctures, bone marrow transplants and CT scans.

Ms Clark and her husband, Mitch, who also have a younger daughter, Bella, said their life "was turned completely upside down".

They were supported by the Rainbow Trust, a charity that helps families who have a child, aged 0-18 years old, with a life-threatening or terminal illness.

"What we do is support the whole family, so that's not just Jaxson, because he's the referred child, or the poorly child, but we offer the sibling - which in this case is Bella - support and play games," said family support worker, Wendy Britt.

"We also offer emotional support to Sophie and do transport to medical appointments."

Ms Clark started an Instagram account, called Jaxson's Journey, shortly after his diagnosis.

At first it was a way of keeping family and friends informed, but now she uses it to raise awareness of leukaemia and the signs, and to encourage parents to seek more medical advice if they feel something is wrong.

"Blood cancer is a difficult one to notice, there's not enough awareness and sometimes GPs get it wrong," Ms Clark said.

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