A Worksop mum has described the earth-shattering moment her son was diagnosed with acute lymphoblastic leukaemia at the age of just five.
Jodie Kelley is sharing her family’s remarkable story in a bid to raise awareness of her son’s illness, which initially produced ‘run of the mill’ symptoms she fears parents may brush off in future.
Brave little Seth, who has now become known as ‘Superhero Seth’ throughout the community, was diagnosed on June 1 and is currently battling the beginning of gruelling three and a half year treatment programme.
It all began when the Ramsden Primary School pupil began presenting with some minor health complaints, such as paleness – Jodie also noticed his feet had ‘a slight yellow tinge’.
She said: “Because of the pandemic, we had a Zoom appointment with our GP. I showed him Seth’s feet and he didn’t seem too concerned. I also sent off a urine sample, but when nothing came back, I assumed it was fine.”
But then the youngster suddenly broke out in hives on his feet, which was deemed by A&E doctors to be an allergic reaction.
When Seth complained of a pain in his right leg, Jodie told herself it was growing pains.
"I did Google his symptoms and leukaemia actually cropped up a few times,” she said. “But we’re always told not to Google diagnose, and you just don’t think anything like that will ever happen to your child, especially when they're so young.
"On June 1, it got to a point where Seth was rolling around in pain all night with his leg. I called the doctors and listed everything. He sensed something was right, and before we knew it we were sent to Bassetlaw Hospital I have to say the staff there were brilliant, checked everything, and immediately ordered a blood test.”
Five hours later, Jodie saw four doctors walking down the wards towards her, one of them holding a piece of paper.
"It was then I knew something was very wrong,” she said. “One of them said, we need to speak to you privately.
“They told me there was ‘no time’ to wait for Seth’s dad Joss, who had not been allowed to come with me due to coronavirus restrictions, to get here.
"I kept hearing all these words I didn’t understand, but one of them was very clear: ‘cancer’.
"Right away, we were transferred to Sheffield Children’s Hospital for an emergency blood transfusion. I remember one of the doctors saying to me, he can’t go home, it’s too dangerous – if he gets a nosebleed, it won't stop.
"In the space of 12 hours, I went from ringing the doctor thinking Seth might have anaemia, to someone at Sheffield Children’s placing a load of pamphlets about chemotherapy in my hand and telling me the treatment would take more than three years.
"It was all just a blur. It didn’t sink in then and to be honest, it still hasn’t now.”
Since then, Seth has been attending Sheffield Children’s two to three times a week and had around three rounds of chemo.
The courageous young boy has started to lose his hair, gained around ten pounds due to the steroids he has to take, caught infections and has had to be put to sleep twice.
Seth will also have to be measured for a wheelchair, which the family are hoping he won’t have to use too much.
"Despite all this, he’s actually been incredible and though he does struggle, is dealing with it so well,” added Jodie. “He’s strong – stronger than me and his dad, for sure.
"It’s a blessing that he’s not old enough to understand what ‘cancer’ means yet, and neither does his two-year-old brother.
"But it has really affected his older brother, who’s now seven. They both attend Ramsden and as Seth has had to have 18 months off from school, being separated is hard for him – they’re the best of friends.”
You’d be forgiven for wondering how the family cope. Jodie said: “We don’t have a choice. But one thing’s for certain, our family, friends and the Worksop community as a whole have showered us with support. It’s been overwhelming, to be honest.
"Joss and I have always been really proud people who find asking for help difficult.
"But so many have rallied round. Ramsden organised a fundraising non-uniform day, and my sister and two of her friends are aiming to run 100 miles throughout July to raise funds.
"It was an emotional day when the Rotherham Riders held a fundraising three-hour bike ride and stopped off to see us in our quiet cul-de-sac in Thievesdale.
"We opened the curtains and there were 100 bikes.
"Again, we don’t like asking for help let alone money, but everything is adding up.
"After travel costs, we have to pay £20 a day to park near Sheffield Children’s – if you’re staying on a ward, there is a car park for patients, but it’s hard to get a space.”
Jodie and Joss also want to to decorate Seth’s bedroom, so he has a comfy space with a more accessible bed that makes it easier to administer medications along with his feeding tube.
“We wanted to share Seth’s story not only to raise awareness, but also to thank all the incredible people, many of whom are total strangers who’ve stepped in to support us,” added Jodie.
"But my main message is, if you have a parent instinct that is something is wrong, get it checked. Leukaemia is surprisingly common, and causes bog standard symptoms like tiredness and bone pain that could easily be fobbed off as something else.”
Follow Superhero Seth’s Twitter page here: https://twitter.com/SuperheroSETH
You can also sponsor 100 Miles for Seth here: https://www.paypal.com/pools/c/8Av2ZTZuxf