A TAMESIDE dad is embarking on a fundraising mission to help charities that supported him and his wife after learning their son is living with cancer.
Shane Cooper was left stunned when then nine-year-old Hughie was diagnosed with T cell lymphoblastic lymphoma following months of wondering what was going on.
And after seeing what groups like Emmie’s Kitchen, Millys Smiles and others do for patients on Ward 86 of Royal Manchester Children’s Hospital and their families, he will trek from his adopted town of Stockport to London, starting on August 17, to raise funds.
Shane, who says the time around the diagnosis was ‘like being punched in the face every day during November and December,’ said: “There are so many small charities that operate within the hospital as a support network.
“They offer so much support and help to people who walk through the door without knowing anything at all to all of a sudden learning everything.
“From Emmie’s Kitchen, the food arrives on a Friday even though you haven’t ordered it. With Millys Smiles, a bag arrives with blankets, pillows, toothpaste and a thermometer in. All the little things you wouldn’t give thought to.
“Hughie loves London and in 2021, his one request for his birthday was for me to take him to London. We went and he had a whale of a time.
“It’s also about raising awareness of these blood cancers. I never knew anything about them.
“And I wanted to find a challenge that would he hard, tough, long and physical, aligning perfectly with the treatment plan he’s going through.”
After winning a junior football cup final at Curzon Ashton and celebrating in the nearby Village Hotel, Hughie, now 10, started showing symptoms of illness shortly after – although no-one had a clue what was causing them.
Shane, 46, added: “June came and he started with a virus but as a nine-year-old kid surrounded by nine-year-olds at school, it was passed off as just a viral infection.
“Doctors said, ‘It’s probably viral, don’t worry.’ Then he started to struggle with his hearing. His nose was blocked to the point that when he talked, it sounded like he was holding it.
“Then in August, it was the same sort of thing only a little bit worse. He couldn’t really hear properly. In September, his neck started to swell and it looked stereotypical of mumps.
“By October, he’d lost about 50 per cent of his hearing, his nose was getting worse and it was affecting his sleep. We were a little concerned – nine visits to a doctor in a four- or five-month period.
“On November 24, we took him to the doctors with videos of him sleeping and it was like classic sleep apnoea. He was fighting for breath. The doctor said, ‘We’ll refer you for more tests.’
“A consultant looked up his nose and said, ‘It could be his adenoids. We’ll seek to take those out and put grommets in his ears to drain fluid. That’s probably all you need to worry about.’”
The first real sign of something going on was raised creatinine levels in Hughie’s blood but Shane and wife Kate were still putting it down to something else – further scans showed another issue.
Shane added: “Kate and I were still blissfully unaware, thinking it could be a kickback from mumps, it could be from glandular fever.
“I went for a sandwich, came back and Kate was like, ‘The guy who’d done the scan wants to have a word with us.’ He said, ‘His kidneys are 50 per cent larger than they should be.’
“I went home but got a call from Kate saying, ‘You need to come back. The consultant wants to speak to us.’ They said, ‘We’re going to have to refer you to Royal Manchester Children’s Hospital.’
“Kate asked, ‘What ward?’ and was told the oncology ward. Me being a bit blinkered was like, ‘What does that mean?’ Kate said, ‘It’s the cancer ward.’ I said, ‘He’s not got cancer, it can’t be anything of the sort. Look at him, he’s absolutely fine.’
“I was like, ’I’m still not believing it could be anything more,’ even though I’m surrounded by children with no hair. In my mind, you know you’re on that ward, you probably know what’s coming but I’m going, ‘I’ll stick a tenner on the 100/1 outsider, you never know.’
“We were taken in and told, ‘Your son’s got T cell lymphoblastic lymphoma, which is a form of blood cancer.’”
Hughie’s condition, which affects about one in a million people, means a similar treatment to leukaemia and after starting on December 5, he spent his birthday and Christmas Day in hospital.
On January 5, the family was told that a heavy course of chemotherapy, he is in remission – but ‘That doesn’t mean it’s gone. We can’t turn off the chemo tap as the risk is too great and if he relapses, the relapse would be significantly worse.’
Now they are going through different 45-day periods while Shane is undertaking the trek, which will take about nine days.
He told The Correspondent: “My sister said, ‘You don’t anticipate something like this happening to you, then the devil is at your door daring you to blink first.’
“But we’re not about, ‘Woe is me.’ We’re about what the treatment plan is and how it looks.
“It’s a long haul. We’re trying to manage all the side effects. It was hard for him at first as he went from captain of his football team to going, ‘We’re taking all of that away from you.’
“He’s certainly had flat weeks when he’s gone, ‘How long will this go on for? When will I kick a ball again?’
“But we’re moving into the next phase and his long-term prognosis is very good.”
YOU can donate to Shane’s fundraising by clicking www.justgiving.com/crowdfunding/cooperhands.