Kevan has a number of projects on the go after two-year-old’s brain cancer diagnosis.
Jordan Reid grins widely as he takes my hand and leads me down the path to the bottom of the garden.
With his blonde crop of hair glinting in the sunshine, the two-year-old is the perfect picture of toddler mischief.
Gently tugging until I’m kneeling beside him, he hands me a spade and, together, we start digging through the dry soil.
It’s a perfect spring day. Even the NG tube running to his nose can’t marr the angelic smile Jordan flashes as he tosses the earth aside. In his other hand, he casually holds the black rucksack that he is connected to by a series of wires. The toddler is coming to the end of a 16-hour feed, at which point he’ll be able to put aside the rucksack he’s been dragging behind him since I arrived.
“He just gets on with it, he’s brilliant,” his grandad, Kevan Adams, says proudly.
Jordan’s condition isn’t cureable and his life will be limited, so it’s our job to make sure it’s packed with love and joy.
“He never lets anything stop him. If he’s in the middle of a feed, he’ll just drag that bag around behind him and keep right on playing.”
He’s an impressive kid, for sure. It’s been ten months since Jordan was diagnosed with an a-typical teratoid/rhabdoid tumour - the cancer that will eventually take his life. In the months that followed his diagnosis, the two-year-old, of Wisewood, underwent nine operations to remove 98 per cent of the tumour, then six months of chemotherapy and six weeks of radiotherapy to shrink what was left. The spreading of the tumour to his neck has caused thickening in his throat and the fusing of his vocal chords, leaving him unable to speak or eat.
“We’d known he was poorly for a while,” Kevan, aged 54, recalls grimly.
“Everyone thought it was a virus, but he was so poorly. He had a cough that wouldn’t go away, and his voice was getting gruffer. I knew in my gut something wasn’t right.
“He was on antibiotics when we took him away for a short holiday to Darlington. Those next few days were horrible; he slumped on my knee the whole time and slept. When we got back to Sheffield, we didn’t even come home first, we went straight to Sheffield Children’s Hospital. They did an immediate MRI and told us the next day that it was a brain tumour.
“The operations removed most of the tumour, but what’s left is wrapped around the base of his brain in such a way they can’t get at it. It’s this that will keep growing back.”
Today, the tube in Jordan’s nose and the scars on his head, from repeated surgeries, are physical signs of the battle he finds himself in. But as he proudly shows me the pictures he’s painted, taking pride of place on the wall in his grandparent’s kitchen, and the playroom his grandad built for him and his four-year-old sister Abi in the garden, he’s just like any other little boy.
“His condition isn’t cureable, and his life will be limited, so it’s our job to make sure it’s packed with as much love and joy as we can manage,” says Kevan, who - along with his partner, and Jordan’s granny, Debra - cares regularly for both children at their Owlerton Green home.
And with that in mind, Kevan began working on what he affectionately refers to as his ‘garden project’ shortly after Jordan’s diagnosis, determined to give him a haven to play in.
“Their granny and I give both children as much as we can, taking them away for a few days every month, but we wanted somewhere for them here too,
“I wanted somewhere for Jordan to run around and play and enjoy himself. He needs fun, and I needed to do something,” Kevan adds.
“I appealed to some local individuals and businesses and so many people came forward to donate their time and materials, I’m disabled so I knew I’d need a lot of help, but I was still stunned by people’s generosity. Someone built the playhouse base, someone else donated the frame and assembled it, someone came and levelled the garden off for us, and built the wall at the bottom. We’ve got someone coming to fit some artifical grass for us, and then next weekend we have someone coming who’s going to donate and build a boundary fence to finish the whole thing off.
“I honestly can’t thank people enough for the help and the time they’ve given to us; it’s been amazing.
“Every step of the way, we’ve been humbled; by the people who’ve helped us, by Jordan - of course - and all the other children that we’ve got to know at Sheffield Children’s Hospital in the last 12 months. You get to know them, and their parents, on your many visits, and you become emotionally involved, like you’re part of a bigger family; there’s a lot of warmth and support in this city.
“The thing we desperately want now is to help fund more research into cancers like Jordan’s - something we just don’t think there’s enough of - and that’s where the railway project comes in.”
The railway project is the second part of Kevan’s master plan, and is born from his desire to give something back to the hospital that does so much for his tiny grandson - and all the other children like him.
“I’m a member of Sheffield Model Railway Society and I got to thinking about how I could use this interest to create something that could help Jordan, and the hospital.”
Kevan has now started work on a 16ft by 8ft model railway which he plans to tour around major UK model railway exhibitions and events when it is finished, with donations being split between Jordan and the hospital.
“Thousands of people go to these exhibitions and if we can take our collection buckets and raise thousands of pounds for the hospital that would be fantastic,” Kevan says.
“Further down the line, we might even auction it off and donate the proceeds to the hospital. We’re also hoping it could raise enough to fund a trip for Jordan to EuroDisney.
“I’m basing the model on a modern version of Brendam Docks and Knapford Station, from Thomas the Tank Engine, so Jordan will love it - he’s a huge Thomas the Tank Engine fan - and it should look spectacular when it’s done.
“There will be two tracks, trains, boats in the docks, bridges and lighting so it will look like a working town at night.
“I’ve reached out to a number of companies so far and I’ve received a lot of donations already. Again, people have been very generous. I have bits and pieces all over the house, but what we really need now is a space to actually assemble it, and - as it’s a big project - I’m hoping to find a number of volunteers to help me pull it all together.
“I still also needs lots of donations - Thomas the Tank Engines, and plenty of scenic materials.
“I’m hoping to have it all finished by February next year, in time for the start of the exhibition season. But we can’t do anything until we can find some space somewhere to build it.”
Jordan’s mum, Amy Adams, added: “It’s really great, I think the work my dad’s doing for Jordan with these projects is just brilliant.”
And when he’s not working in the garden, or on the new model railway, Kevan’s time is strictly reserved for his grandchildren.
“I have my own conditions, and difficult days, but Jordan’s energy and spirit inspires me and keeps me going,” he admits.
“It gets emotional sometimes, we all definitely have tough days - we know we’ll be heartbroken when something eventually does happen to Jordan - but we value every minute we have with him. We’ve never wanted to know how much time he has. Our focus is definitely on living and making the most of every single day.”
Email firstname.lastname@example.org if you can help with donations of materials or would like to volunteer your time.