When Emma Royle spotted a rash on her three-month-old baby son, she knew he’d caught chicken pox from his big sister Nora.
A few days later, the spots disappeared but the rash remained and she took him to the GP.
She was told it was just eczema – a skin condition common in babies – and he was prescribed some steroid cream to clear it up.
But three weeks later, the rash started to spread and a few weeks later, he started to vomit non-stop.
Emma and his dad Nick Southall, 40, rushed him to hospital, where luckily, the consultant on duty at the Royal Devon and Exeter Hospital was a paediatric oncologist.
He recognised that the rash wasn’t eczema at all but was actually a tell-tale sign of Langerhans Cell Histiocytosis (LCH), which develops in about 50 children a year in the UK, according to the Children’s Cancer and Leukaemia Group.
Student recruitment manager Emma, 37, of Exeter, Devon, who was told the condition has a high survival rate, said: ‘It was July 19, 2018, and I’d called the NHS 111 helpline, as Casper had been vomiting for 12 hours straight and I was advised to take him to hospital.
‘The consultant took one look at his rash and said, “I hope I’m wrong, but I think I know what this is.”
‘It all started to fall apart from there really, but in a sense, if there hadn’t been an oncology specialist working that night, who knows when Casper would have got the diagnosis.’
Casper was born on February 5, 2018, 10lb 2oz and was a healthy baby until he caught the chickenpox from his sister and developed an angry rash as well as the usual spots.
‘I took him to the doctors for his chickenpox because of his age,’ said Emma. ‘When he saw the rash, he said to come back if it didn’t clear up in a week alongside the spots.’
Weeks later, she went back and was then told it was eczema and given the steroid cream, but at the start of July 2018, the rash spread to his neck and leg.
Emma went back to the doctor, who thought it had become infected because Casper was wearing a nappy and prescribed antibiotics.
‘I wasn’t convinced by the diagnosis,’ she continued. ‘Nora has had very light eczema and it seemed completely different to her’s, but when a doctor tells you something you take their word for it.’
Heading off on their first family holiday to Brittany in France the next day, doctors advised Emma that Casper would be well enough to go.
But just a day in, he ‘screamed the house down,’ as his rash became more and more inflamed.
‘We tried putting him in the bath to ease the pain, but he was uncontrollable,’ she said. ‘You could tell he was in agony, so we took him to the local hospital.
‘We were in there for three days, as doctors wanted to ensure he wasn’t dehydrated, but the general consensus was that he was fine, although one nurse did suggest we weren’t bathing him enough, which was the last thing we needed to be told.’
The day after they got back from holiday, Casper started vomiting and they took him to A&E at their local hospital. It was there that he was diagnosed with cancer.
First doctors took a biopsy from the affected area around his groin to test for LCH – which has no known cause, but sufferers of which have too many histiocyte cells which normally protect the skin, but sometimes move around the body causing damage – and he was transferred to Bristol Royal Hospital for Children, awaiting the results.
Four days after the biopsy it was confirmed that Casper, who was in the high dependency unit, had multi-system LCH, meaning the condition – which some experts describe as ‘cancer’ while others believe it is not and simply shares some characteristics – affects more than one part of the body.
Unlike most cancers, it can spontaneously resolve itself and has a survival rate of 90 per cent, although multi-system LCH can and often does return after treatment.
With Casper’s diagnosis confirmed, in August 2018 he began a gruelling 12-week course of chemotherapy once a week, to kill the rogue cells which were causing potentially life-threatening lesions in his skin, bone, gut and bone marrow.
‘Doctors told us that although there were no tumours, the lesions were effectively zapping Casper of healthy cells that usually help the immune system to function properly,’ said Emma.
‘At first, the chemo seemed to be working, as his rash cleared up and he started to seem more like a normal baby, but just when we thought we were over the hill, Casper started deteriorating again.’
When his three-month treatment programme finished in November 2018, with no signs of improvement, Casper’s family were told he could have more chemo or get a place on a clinical trial.
Worried that Casper might not have the fight in him for another round of chemotherapy, he was given a clinical trial drug Dabrafenib, a cancer growth blocker, which stops the signals cancer cells use to divide and grow. It also inhibits the production of the BRAF gene, which can mutate and is thought to be largely responsible for LCH.
The trial was for children over one but Casper was only eight months. Doctors spoke to the drug company and he was given a year’s supply of the drug on compassionate grounds.
Within a week of taking the drugs, which Casper has twice a day, the rash had completely cleared, and blood tests showed the mutated cells were no longer active.
‘By Christmas you would never have known anything had been wrong with him, it really was mind-boggling how quickly he recovered,’ said Emma.
‘It was like we finally had our baby boy back and could be a proper family again, just in time for our first Christmas together.’
Emma’s maternity leave was due to finish in January 2019, and she felt his illness had robbed them of the precious time new mums usually spend bonding with their babies.
Fortunately, Emma had taken out an insurance policy with Vitality when she gave birth, covering children with serious illness and when she looked into it, she was entitled to a £20,000 payout, meaning she could take another eight months off to spend with Casper.
Sadly, Casper is not completely out of the woods yet, as the LCH can return.
Emma explained: ‘It’s likely it will come back and we can’t expect the drugs company to provide free medication indefinitely.
‘When it stops, we don’t know how quickly the LCH could return and, even if Casper’s lucky enough to be on the clinical trial for years, we don’t know what side effects it might have later down the line.
‘Not having a time frame is hard and, while we’ve steered clear of any prognosis, the fact is nobody knows what affect this will have on Casper’s health as he grows older.
‘We’re just grateful for being allowed to make memories and start living like a normal family again – for however long that might be.’
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