‘Both my twins were diagnosed with leukaemia at two and I don’t know if they’ll see their fifth birthday’ – The Sun

WHEN her four-year-old son missed his first school photo, because of a hospital appointment, another mum told Sian Milne, “There’s always next year.”

But Sian is all too aware that the well-meaning remark may not be true for Edward and his identical twin Austin – they are both battling leukaemia.

“I don't know that either of them will have a school photo next year,” she says.

“No birthday or Christmas is guaranteed for us. If they want something I can’t say, 'I'll get that for their fifth birthday,' because I don't know that they'll have a fifth birthday.

“No parent should ever have to be thinking that way about their child.”

The twins, from Tong in Kent, were diagnosed with Acute Lymphoblastic Leukaemia (ALL) six months apart, when they were two.

The most common form of childhood leukaemia, accounting for 80 per cent of all cases and around a quarter of all childhood cancers, ALL is still relatively rare.

Around 400 new cases are diagnosed every year in the UK, more than half under the age of five.

For 33-year-old Sian – who also has an 11-year-old son Jacob with partner Tom Gasson – it means much of the last 14 months has been spent in and out of hospitals with the boys.

As the festive season approached this year, she was hoping to make it extra special for the boys and was praying there were no emergencies to ruin plans.

"You're planning but in the back of your mind you know, there's very high chance that you won't even be at home," she told the Sun Online, just before Christmas.

"Even this week Edward was rushed to hospital in an ambulance with suspected sepsis and Austin needed an emergency op, so Christmas hangs in the balance."

'My first question was 'when will he die?'

When Sian and Tom discovered they were having twins, in an early scan, they were over the moon.

But at 20 weeks, Sian’s cervix opened and she was in danger of losing the babies, so was admitted to hospital for ten weeks of bed rest.

Austin and Edward were born by caesarean section at week 34, in May 2015 – weighing in at a healthy 5lb 6oz and 5lb 3oz.

But in August 2017, Sian began to suspect something was wrong with Austin.

“He was very pale and lethargic. Edward was running and leaping around but Austin would take a few steps and he was tired,” she says. “He would squat down on the floor and get stuck, unable to get up and his walking was not progressing.”

After blood tests, doctors told the couple Austin had anaemia but Sian challenged the diagnosis, pointing out that Edward, who had exactly the same lifestyle and genetic make-up as his brother, was not anaemic and they agreed to further tests.

In October 2017, as the family prepared to move house, Sian was packing boxes in her kitchen while the twins had a nap when she got a call telling her to come immediately to Medway Hospital.

When she arrived, the consultant told Sian and engineering manager Tom that Austin had leukaemia.

“My whole world fell apart,” she says. “I thought he’d pulled a muscle or something. My first question was, 'When's he going to die?' That's not a question you should ever have to ask about your two-year-old.”

Austin was admitted to hospital and five days later – the date of the house move – he was transferred to the Royal Marsden in Surrey to have bone marrow samples taken and a lumber puncture, to draw fluid from his spine, before starting a three-year course of chemotherapy.

As the couple sat by the sick tot’s bedside, their friends and family travelled from all over the country to move them into their new house.

“It was very weird, leaving a house and coming back to a new house, with everything unpacked and put away,” says Sian. “But I can’t thank them enough.”

Devastated by second diagnosis

Because Austin’s leukaemia is caused by a genetic mutation, doctors said Edward could also be at risk as they shared the same placenta.

With just a 10 to 15 per cent chance, Sian agreed he should be monitored but says she was “not really concerned”.

But in May last year, the twins were sharing a bath and she noticed Edward was pale and washed out while Austin, who had just finished an intensive chemotherapy treatment, had more colour.

Although he was suffering from tonsillitis, Sian wanted to be sure it was nothing more and took him in for blood tests.

A few days later, just two weeks before his third birthday, the couple were told the devastating news that their second twin also had leukaemia.

“We were devastated. We’d all coped really well with the first diagnosis, saying, ‘Let's just get through this, it'll be fine.' We even made very British inappropriate jokes like, 'Lucky we've got two of them,' just to get through it," Sian says.

“We’d just got Austin's end of treatment date and a week later we were back at the hospital with Edward starting his treatment.”

'I thought Austin was dead'

The treatment starts with 12 months of high dose steroids and intensive chemotherapy and then moves on to daily doses orally as well as occasional doses through a line that has been installed in the boys' chests. They also have monthly lumber punctures.

Because of the damage to their immune systems, caused by chemo, they are also prone to infection and need to be admitted to an isolation ward every time they have a high temperature or bug.

At one point, when Austin contracted sepsis, Sian though she had lost him.

Admitted for a high temperature and a cough, he was suddenly violently sick and slipped into unconsciousness.

"One minute he was sitting up eating a punnet of strawberries and chatting and the next he was out of it. It was it was so quick," she recalls.

“He was in the High Dependency Unit being constantly monitored and he was really fighting and suddenly all the machines went dead and I thought he had died.

“It was terrifying, but it turned out I had accidentally knocked the sensor off his body. When I found out I was all over the place, going from hysterical laughter to crying.

"One of the hostesses who look after us at the hospital dragged me away and made me sit down with a cup of tea and I just let it all out – sobbing my heart out.”

Another low point was when Edward developed mucositis – painful ulcers in the lining of the digestive tract caused by chemotherapy.

“It started with a couple of mouth ulcers and the next day you couldn't see his teeth, his gums had swollen up so much," Sian explains.

“His ulcers went all the way through his mouth, through digestive system all the way out the other end and he was in horrendous pain.”

'Amazing' boys bounce back every time

The risk of infection meant the boys couldn’t go to a nursery and Sian says Demelza Hospice Care, in nearby Sittingbourne has proved a lifeline for the family.

She initially approached them to help with Jacob, who was struggling after the second diagnosis and having panic attacks, and has now benefited from the hospice’s counselling programme.

But she soon began to take the twins to the playgroup there and has recently accepted help from the Care at Home team, who look after the boys for two hours a week so she can have a break.

“Because of their treatment the twins were isolated from everyone, so most of the time it is just the three of us all day long" she says.

“Now on Wednesday afternoon they are sitting by the door waiting for their ‘melza friends’ from the Care at Home team or I take them to the hospice, where they can run around with other kids or use the hydrotherapy pool. It's every child dream and they love it.”

This Christmas, as well as supporting Demelza Hospice Care, Sian’s friends and family have been fundraising to convert a room on Medway Hospital’s Dolphin Ward into a play area for children who are placed in isolation, and have already raise £18,000.

What is Acute lymphoblastic leukaemia and what are the symptoms

Acute lymphoblastic leukaemia is a type of cancer that affects white blood cells. It progresses quickly and aggressively and requires immediate treatment. Both adults and children can be affected.

ALL is rare, with around 790 people diagnosed with the condition each year in the UK. Most cases of acute lymphoblastic leukaemia develop in children, teenagers and young adults.

Boys have a greater risk than girls of developing ALL, by a factor of 4:3. The reason for this difference between the sexes is not known. Boys also require a longer duration of treatment.

Until the 1960s, childhood leukaemia was incurable but today it has a survival rate of over 90 per cent.

Childhood leukaemia develops quickly. The symptoms are quite general, including:

• frequent, persistent infections
• unusual bleeding and bruising
• tiredness
• paleness
• breathlessness
  

Source NHS

With Austin’s treatment set to last until December 2020, and Edward’s going on for six months longer, Sian says she can’t plan a future for her beautiful boys.

“You just have to take each moment as it comes and enjoy the really good days," she explains.

“No matter how much I think ‘this is rubbish’, I have to remember that it's so much worse for them, because they're physically going through it.

“But they're amazing. They just take it in their stride and they bounce back so quickly. They blow me away.”

To donate to Demelza Hospice Care for Children go to www.demelza.org.uk

To support her Dolphin Ward fund click here.

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