The devastated parents of a six year-old boy who died from hidden cancer in less than a year have urged others to seek advice for childrens’ ailments — even if they seem harmless.
A bloated stomach was the only sign of a rare, aggressive tumour that developed in the abdomen of Hugh Menai-Davis in autumn 2020.
His parents, Frances, 40 and Ceri, 42, from Hertford, assumed that he was suffering a stomach bug, and put subsequent tiredness down to ‘playing all day long’.
Their suspicions were echoed by a GP, who said the ‘virus’ would likely vanish in a few days.
But when the swelling persisted, the family insisted on further examinations, and a GP eventually sent Hugh to Lister Hospital in an ambulance for further tests.
After a series of tests, Mr and Mrs Menai-Davis were delivered the nightmare news that every parent fears.
‘Our lives changed forever. The consultant said, we think Hugh’s got cancer,’ Mr Menai-Davis told MailOnline.
Hugh was diagnosed with rhabdomyosarcoma, a rare and aggressive cancer that forms in muscle or fibrous tissue.
Hugh Menai-Davies in hospital after parents being told it was probably just a stomach bug
Hugh was a kind, courageous and fiercely independent boy who loved playing outside
It is most commonly found in the head, neck and chest, but can occur in other parts of the body, including the stomach.
It affects around 55 children in the UK every year, and often becomes resistant to treatment.
The most common symptom of rhabdomyosarcoma in children is a lump or swelling usually around the head and neck, Sarcoma UK says.
Hugh’s condition deteriorated rapidly after the diagnosis and he was transferred to Addenbrooke’s Hospital, Cambridge.
His abdomen filled with fluid, putting pressure on his lungs until he could no longer breathe on his own.
‘My wife and I were in tears behind closed doors,’ Mr Menai-Davis, a sports industry executive, said.
‘Fear is learned, so we didn’t want to show him any weakness. We never told him that he wouldn’t be alright.
‘Hugh faced everything with innocence and ignorance and he was just amazing.
Hugh with his mum Frances (left), dad Ceri (right) and younger brother Rafe
‘He never moaned or complained, he just got on with it.’
When Hugh’s condition was somewhat stable, he began a course of chemotherapy in an attempt to kill the cancer.
The treatment proved initially successful and he began to recover, before eventually being discharged on November 17 2020.
Mr Menai-Davis said: ‘Hugh was quite literally jumping around the house so we thought we were winning. We thought we were beating the cancer’.
But over the next six months, Hugh was in and out of hospital every three weeks for further intensive chemotherapy.
This was followed by a brutal 16 weeks of radiotherapy to further blast the tumour.
Just before his sixth birthday, he rang the bell to mark the end of his cancer treatment on May 23.
But within three and a half months, scans showed the cancer had returned, and doctors delivered the gut-wrenching news that nothing further could be done for him.
Hugh never once complained and was wanting to play until the very end
This graphic highlights some of the lesser known signs of cancer in children, including early/late puberty, developmental delays, slow growth, slow recovery from bone injuries, limited or abnormal facial movement and hearing problems
‘When we were told that Hugh was dying,’ said Mr Menai-Davis.
‘They put a box of tissues behind us and told us that that was it. I asked the question: “what do I do now?”’
Hugh died just a few weeks later, on September 18 2021.
Now, nearly four years on, the couple have warned other parents not to delay in seeking medical help if ‘something doesn’t feel or look right’.
‘Please go and seek the advice of a doctor,’ said Mr Menai-Davis.
‘No one knows your child better than you and the majority of the time it is nothing to worry about, but from our experience it is worth the effort.’
Determined to make a difference and allow Hugh’s legacy to live on, the heartbroken father will walk the London Marathon in 10 days time with the weight of his child on his back to raise money for cancer support.
The family have launched their own charity, called It’s Never You, which has raised £40,000 this year alone.
It continues to provide parents with emotional, financial and mental well-being support, ‘serving as a reminder to parents that cancer does not discriminate.’
It’s not the first time Mr Menai-Davis has attempted the marathon in memory of his son.
In 2021, he ran the epic race just two weeks after Hugh passed away.
‘When he was in and out of meds, towards the end of his cancer treatment, Hugh said to me “go run daddy”‘, he said.
‘He’d tell all the nurses and doctors that I would be running the marathon.
‘Campaigning gives me a chance to carry Hugh’s name on and for his courage and kindness to live on.
‘He was the most giving and caring child, and he didn’t deserve it. No child deserves it.’