- Dylan Askin was critically ill and suffering from a rare form of lung cancer
- Doctors told his parents that it was time to think about letting him die
- However, after agreeing to switch off his ventilator he made a recovery
- Last month Dylan started nursery against all expectations
Three year-old Dylan Askin (right) of Derby whose parents – Kerry (left) and Mike – were preparing to switch off his life support when he came back to life
Blond hair plastered to his forehead, his favourite Mickey Mouse toy by his side, Dylan Askin’s broken little body could take no more.
Suffering from a rare form of lung cancer, critically ill with bacterial pneumonia, his major organs failing, the doctors told his devastated parents Mike and Kerry it was time to think about letting him go.
Dylan’s heart rate was a dangerous 200 beats a minute and his oxygen levels so low they could not sustain life much longer.
Cysts covered 80 per cent of his lungs, which kept collapsing and had so many holes they resembled Swiss cheese. The remaining 20 per cent was ravaged by infection.
His kidneys were not functioning and Dylan had internal stomach bleeding. He was not responding to antibiotics and he could die from a cardiac arrest at any moment.
With no hope of recovery, medical staff at Nottingham University Hospitals were preparing consent forms to switch off Dylan’s life support while his heartbroken family gathered at his bedside to say goodbye.
On Good Friday, March 25 this year, a priest baptised two-year-old Dylan in a poignant ceremony in front of his parents, older brother Bryce, six, three grandparents, two aunties and two cousins. On Easter Saturday, they all came to give him one last cuddle.
‘I kept telling Dylan I loved him, over and over again. I knew he was dying, but I couldn’t bring myself to say the word goodbye,’ says Kerry, 29, who was 26 weeks pregnant with her third son, Logan.
‘I sang his favourite song, Twinkle Twinkle Little Star, and You Are My Sunshine. I didn’t want to let him go, but I looked at his poor little body and thought: “Are we being cruel keeping him alive?”
‘I remember my dad bending down and whispering in Dylan’s ear: “You can do this, Dylan, you have to get better and if you do I will buy you a big tub of sweets.” But I’d given up all hope. The truth is I’d already let him go, days before the doctors even talked about switching off his life support,’ says Kerry, of a decision that haunts her to this day.
‘Dylan had been in intensive care for almost three weeks. Every day he was deteriorating. All the fight had gone out of me and I felt defeated. I was in absolute despair.’
Thankfully, the family were spared the most dreadful of outcomes. This week, Dylan — a cheeky, adorable three-year-old ball of irrepressible energy — was hailed the ‘boy who came back from the dead’ when his almost biblical story of recovery made the headlines.
Suffering from a rare form of lung cancer, critically ill with bacterial pneumonia, his major organs failing, the doctors told his devastated parents Mike and Kerry it was time to think about letting him go
On Easter Sunday, as Mike and Kerry waited to sign paperwork agreeing to switch off Dylan’s ventilator, excited doctors rushed to his bed with the surprising results of last-minute blood tests. ‘These are not what we expected. We’re going to keep treating him,’ they said.
Defying all medical expectation, Dylan had started to respond to the antibiotics. His oxygen levels went up and his heart rate went down, then his stomach stopped bleeding.
On April 4, Dylan was taken off the ventilator and started breathing on his own. The next day, he showed signs of recognising his parents. The day after that he said ‘Daddy’.
Within a week he was talking. After two weeks the last of the chest drains were removed. On April 26, he celebrated his third birthday in hospital and on May 16 he was well enough to be discharged. Last month, Dylan started nursery.
Now, six months on after that terrible night of utter despair, Dylan is charging around the living room in the family’s home in Derby, playing with his superhero toys and squabbling with his older brother Bryce, while four-month-old baby brother Logan enjoys a bottle of milk in his mother’s arms.
Mike and Kerry still can’t quite believe it. With wide smiles, they admit that if any Hollywood scriptwriter had come up with their remarkable story, people would dismiss it as being ridiculously far-fetched.
Dylan’s heart rate was a dangerous 200 beats a minute and his oxygen levels so low they could not sustain life much longer
‘We’re not religious, but either someone up there was on our side that night or we completely underestimated Dylan’s strength and sheer determination to live,’ says Mike.
Even Patrick Davies, head of the paediatric intensive care unit at the Queen’s Medical Centre in Nottingham, where Dylan was treated, agrees that his case defies medical explanation.
‘Dylan’s story is one of drama, despair and recovery, which would be rejected as too outlandish if written in a book,’ he says.
Today, Dylan still has chemotherapy every three weeks to treat pulmonary langerhans cell histiocytosis — a lung cancer that normally affects adult smokers and a small number of young children.
Affecting one in 200,000 children, it occurs where an over-abundance of immature white blood cells attack the body and eat away the skin, bones and organs.
Dylan’s strain of the disease, which causes cystic lungs, is rarer still and affects just one in ten million children. The causes remain a mystery.
The cysts that once covered 80 per cent of Dylan’s lungs have been reduced to 20 per cent thanks to chemo and steroids.
Dylan Askin (right) enjoying life after coming out of hospital. Also pictured are his brothers Bryce (6) and Logan (4 months) and his dad Mike
If his recovery continues, Mike and Kerry — both non-smokers — hope that by the age of five, Dylan’s cancer will be in remission and he can go on to live a normal, full life.
To look at him now, you’d never believe there had been anything wrong with him at all, let alone being hours from having the life support switched off,’ says Mike, 36, an assistant restaurant manager, who with his wife is hoping to raise awareness and funds for research.
‘When people see our sons, they look puzzled and ask: “Which is the sick one?” ’
Kerry, who runs an art business from home, adds: ‘He is blissfully unaware of what he’s been through. He remembers going in an ambulance, but little else, which is a blessing.
‘Sometimes, when he coughs, he says: “Oh no, I will have to go back to hospital.” But his lungs haven’t collapsed since he’s been home.
‘When we took him to Legoland during the holidays I spent two days chasing him up and down the park and he wasn’t even tired.’
This is the first time Mike and Kerry have talked about their Easter miracle, but while they are clearly on cloud nine, lingering guilt still casts a shadow over Kerry’s joy at having her son back home.
For as they tearfully sang songs to Dylan, took a lock of his baby hair, made prints of his hands to remember him by and cherished every last minute with him, there was also a potentially explosive decision to be made that could have torn this family apart.
While Kerry had lost hope and was ready to sign the consent forms to switch off Dylan’s ventilator to end their son’s suffering, Mike most definitely was not prepared to do this.
‘I lost my mother to bowel cancer when I was nine months old and it has affected my whole life,’ says Mike. ‘I wasn’t going to lose my son as well without a fight.
Dylan Askin in hospital just after coming off the ventilator
‘It just felt so unfair. I argued with one doctor about switching off his life support and at one point I was told to leave Dylan’s bedside, but I flatly refused. I’m very stubborn and I just couldn’t accept that nothing more could be done for him.’
Kerry says: ‘I feel very guilty about that now. I’d given up when all the time my precious little boy had other ideas and was still fighting to live.
‘I regret the decision I almost made every single day and sometimes I feel I don’t deserve this beautiful boy.
‘I was pregnant, my hormones were awry, I couldn’t sleep with worry and I’d told Mike: “I can’t be the one who fights for Dylan. I can’t cope. I’m losing it.”
We’d seen other couples torn apart by situations like ours, arguing in hospital corridors. I thought I was being realistic, in accepting the inevitable, while Mike was in complete denial.
‘So I made an agreement with Mike. I said: “If there’s no improvement by Easter Sunday, we will contemplate whether we are being cruel keeping Dylan on life support.”
‘But now I feel so grateful for Mike’s strength because it balanced out my despair. While I gave up, he kept fighting. I am struggling to forgive myself for trying to persuade Mike to let Dylan go.
‘At the time I felt cruel making Dylan suffer when, realistically, I was actually being selfish in giving up on him because of my own emotional torment and inability to cope.
‘In the end, matters were taken out of our hands. Lo and behold, Dylan had other ideas.’
It was Christmas Day 2015 when Dylan, until then a healthy little boy, started coughing. Listless and tired, he hardly showed any interest in his presents and barely ate his lunch. Mike and Kerry thought that he had developed a minor chest infection.
As the day wore on and Dylan became increasingly breathless, Mike took him to a walk-in medical centre near their home while Kerry took their older son Bryce to see her parents to deliver the good news about her 12-week pregnancy scan.
After having his oxygen levels checked, Dylan was rushed straight to A&E in Derby and then transferred to the high-dependency unit at Nottingham Hospital when X-rays revealed shadows on his lungs, one of which had collapsed.
A later scan revealed a morass of air-filled cysts on his lungs, and he remained in hospital for a week before returning home.
On February 10, while they awaited test results and a proper diagnosis, Dylan was rushed to hospital again when he suddenly stopped breathing at playgroup.
This time, both his lungs had collapsed and a volunteer playgroup worker had to perform CPR to save his life before the ambulance arrived.
Mike, who was attending a conference in Barcelona, took an emergency flight home and arrived at the hospital that night not knowing if Dylan would still be alive.
When an oncologist confirmed cancer, Kerry and Mike were told their son’s condition was treatable. He began chemotherapy, but needed oxygen and chest drains as his lungs struggled to stay inflated.
On March 18, Dylan suddenly went downhill after contracting a chest infection. With a fever spiking at 40c, he suffered a febrile convulsion and stopped breathing.
He was rushed to intensive care and put on a ventilator.
From that moment, Kerry and Mike never left his side, taking turns to sleep by his bed or have a snatched meal, so he was never alone in case the worst happened.
Kerry says: ‘The Thursday before Easter, Dylan had a lung collapse so severe that it was crushing his organs and his heart and he just couldn’t recover.
‘At that point I thought: “We’re not going to get him back.” He wasn’t strong enough to fight the infection and the cancer.
‘None of us thought he’d survive. Not even the doctors. I felt so helpless. I was pacing up and down. I couldn’t bear to leave his bedside, but another part of me couldn’t bear to be there with everything going wrong and no one being able to control it.
‘As they stuck all these needles in, I was thinking: “I hope he can’t feel this. I hope he isn’t aware of what’s happening to him. I hope we’ve done everything we can for him.”
‘Then I thought about Bryce, who was staying with my parents, thinking how close they were and how I was going to explain to my eldest son that his best friend might not survive.
‘We had to explain to him that Dylan was very ill and might never come home, that he may have to go to heaven and live with the angels.’
By the night of Easter Sunday, however, even Mike’s hope was draining away. He finally agreed with Kerry that Dylan could suffer no more and they should consider turning off his life support.
‘Dylan’s lung had collapsed again and I was devastated,’ says Mike. ‘I put out a Facebook message saying we hadn’t got our Easter miracle and asked everyone to send positive thoughts and prayers.
Even if Dylan (right) survived, they had no idea if his oxygen-starved brain had been damaged
‘But as we waited for the paperwork to sign, I kept saying to Kerry: “Are we making the right decision?” Then, as a side room was being prepared for him, a consultant came rushing back with Dylan’s blood test results, saying they were better than expected.
‘Our heads whipped round and we both said “No” to switching off his life support. “We’ll wait.”
‘But a registrar told us: “The decision is now out of your hands. We’re going to keep treating him.”
‘It was pivotal moment. From then on, it was a slow, gradual recovery.’
Even if Dylan survived, they had no idea if his oxygen-starved brain had been damaged. As the weeks passed, Mike and Kerry’s optimism grew and hope returned.
Today, as Dylan excitedly chatters away in front of us, leafing through a toy catalogue looking for Christmas presents, then kisses his dad on the cheek before Mike leaves for work, life seems as close to normal as it could possibly be.
Kerry says: ‘I do look back and wish I’d been stronger. I’ll always feel guilty that Mike was the one who remained strong, right up to the last minute, when I’d given up.
‘Now we’re able to be strong together — but it was Dylan who turned out to be the strongest of us all.’