Fighting with a smile
Told her little boy was constipated, Katie Carter, 30, from Hull, had no idea of the true battle that lay ahead
Daniel had been off school and seemed in more pain than ever
My youngest son Daniel snuggled up close to me. ‘It hurts, Mummy,’ he said, crying and rubbing his belly.
It was early 2016, and Daniel was then 5 years old.
He hadn’t been able to go to the toilet for a couple of days.
All he wanted was cuddles with Mummy – it wasn’t like Daniel at all.
He was usually a boisterous little boy. A happy chap, always wanting to get stuck in with his older brothers David, then 7, and Liam, 6.
Now, he didn’t want to play and there was no sign of his cheeky grin.
Worried, I decided to take him to the doctor’s.
Thinking Daniel just had a tummy ache, they suggested we try giving him Calpol.
But we were soon back at the surgery with the same problem.
This time, we were given laxative sachets in the hope they’d ease his constipation.
‘They’re not working,’ my husband Kevin, then 29, said after a couple of weeks.
He was right, Daniel had been off school and seemed in more pain than ever.
For the next few months, we were back and forth from the doctor’s, but they were baffled. Nothing we tried helped. ‘Maybe we should get a second opinion,’ I said to Kevin.
By then, Daniel was in so much pain he couldn’t get up and walk.
We took him to a new GP, where the doctor felt his stomach and gave him a check-up.
‘Something’s not quite right,’ the doctor warned. ‘You need to go straight to A&E.’
Panicking, I jumped in a taxi with Daniel and my older boys, and we rushed to Hull Royal Hospital.
Kevin joined us there, and Daniel was seen straightaway.
‘We just need to listen to his chest,’ one doctor told us.
But soon, more doctors swarmed round Daniel’s bed as we waited for a diagnosis.
It was painful, not knowing what was going on while medics fussed over our boy.
Daniel was kept in for tests for a few days, before he was whisked off for a CT scan.
‘It’s something bad, I know it,’ I sobbed to Kevin.
‘At least they’re taking it seriously,’ he said, holding me.
That night, as we waited for the scan results, I couldn’t sleep.
What was wrong with our little boy?
The next day we went in to see Daniel’s doctor, shaking with nerves.
‘We’re really sorry to tell you, but Daniel has a large cancerous tumour on his chest and spine,’ he said.
‘No!’ I wept, devastated. Our poor boy hadn’t had constipation, or a tummy ache. He had cancer!
We found out it was rare neuroblastoma, at the highest, most aggressive Stage 4.
And the worst part was that doctors said he’d been living
My poor boy was paralysed and would never walk again
with it for the past two years.
The cancer had spread to his pelvis and under his arms.
Wiping away my tears, I could barely look at Daniel in his hospital bed.
He was so small and innocent, yet so very sick.
‘We need to take you to a special hospital,’ Kevin finally told him, with tears in his eyes. ‘We need to make you better.’
Daniel needed an operation to remove the tumour straightaway.
A few days later, my parents looked after David and Liam, while Daniel was taken to Leeds General Infirmary.
The next day, as our little boy clutched his teddy bear, I was heartbroken to see his confused face as he was wheeled down to the theatre. I was a wreck.
As the tumour was sitting on Daniel’s spine, the 12-hour surgery was complicated.
‘How did it go?’ I asked, as soon as the doctor emerged. But it wasn’t good news. They’d managed to remove most of it, but the tumour had damaged his spinal cord.
It meant that Daniel was paralysed from the waist down. ‘My poor boy!’ I wept. He’d never walk again and would spend the rest of his life in a wheelchair.
But there was no time to come to terms with the shattering news, as Daniel needed to start intense chemotherapy. ‘Daniel is poorly, but doctors are giving him special medicine to make him better,’ we told the older boys.
‘Will he lose his hair?’ Liam asked. ‘Maybe,’ I replied. I knew the answer was yes, but I didn’t want to scare Daniel.
He was started on a low dose of chemo to see how his body would respond.
His hair did fall out and it was hard watching him get so sick.
Then doctors decided to put him on a higher dose.
It was tough on us all. While Daniel was in Leeds, with Kevin at his bedside, I was looking after Liam and David at home in Hull. It was so hard being apart.
But I took the boys to see their Back home with me and Kevin brother often and they played as though Daniel wasn’t even ill.
Despite everything, his face would light up whenever he saw them.
That cheeky smile of his was never far away, even through the hardest of times.
But the treatment was brutal. ‘Doctors say the next round of chemo could put him into Intensive Care!’ Kevin cried to me on the phone, a few weeks after the surgery.
Watching our boy have painful chemo was heartbreaking. But he was a real trouper, giggling and smiling through his treatment.
Luckily, Daniel was strong and, by February 2017, he’d made it through the chemo. And after that he had three weeks of radiation.
Then CT scans showed the cancer was being kept at bay.
By March 2017, he was no longer having treatment and we were so relieved that he could finally come back home.
But Daniel still had to cope with life in a wheelchair.
He’d always loved the outdoors and playing with his brothers, so that summer, we moved, hoping to renovate the garden for him.
But after everything we’d been through, we didn’t have the time or money. Then we were approached by a local charity, called Nice 2B Nice.
It said it could help us raise the money – £9,000 to convert Daniel’s garden into an accessible and safe play area for him.
We made a video online to help raise awareness. It was full of pictures of Daniel smiling in his hospital bed, messing about with his brothers and hugging his doctors and nurses.
It really brought home how brave he’d been and, in no time, the money was raised and the work began.
Daniel’s eyes lit up as soon as he saw his new garden and now he loves playing in it. His brothers are so lovely with him. But we all have difficult days. ‘Why am I in a wheelchair?’ Daniel asks me sometimes, and it’s hard for me to find the right words.
He still doesn’t quite understand when I tell him it was because of a tumour.
He’s gone back to school, but only for an hour a day.
Soon he’ll move to a more specialised school which is designed for wheelchair access.
He’ll continue to have scans every three months, but he has to have the all-clear for five years before he’s officially in remission.
For now, we’re just taking it one day at a time.
We’ll try to make his life as ordinary as possible.
But, most of all, we’re so glad that he’s come out the other side of cancer.
So many people don’t survive what Daniel’s been through.
Our brave, smiley little boy is back at home where he belongs. That’s the only thing that really matters.
Daniel with David (left) and Liam My little trouper