When Nikki Knight’s four-year-old son, Toby, began suffering with fatigue and a fever, she put it down to Covid.
Her husband, Ollie, 41, had recently caught the virus, so it seemed to be the most obvious explanation.
But Toby’s health continued to deteriorate. Her energetic son who loved dinosaurs and playing with his older sister, Sophie, now 12, began falling asleep at pre-school, and when he developed a rash that wouldn’t fade, Nikki, 39, took him to A&E.
But it was at hospital when Nikki’s world turned upside down, and she told her little boy had leukaemia.
And now, with the festive season in full swing, Toby is embarking on a course of gruelling treatment, which will mean he spends Christmas Day in isolation at Great Ormond Street Hospital.
It was New Years Eve 2021 when Toby’s parents noticed he was becoming unwell. After initially suspecting Covid, Nikki grew concerned when her son’s condition didn’t improve.
‘In early February he was sent home from nursery with a temperature. I then noticedwhat appeared to be a red meningitis-type rash on his thigh that didn’t fade.’
At hospital, medics sent Toby for an X-ray and ordered extensive blood tests. Covid restrictions meant only one parent was allowed to be with Toby in hospital, so Nikki was alone when she was dealt the devastating news.
Blogger Nikki says: ‘As soon as I saw the looks on the doctor’s face, I knew something was terribly wrong. I was told all signs were pointing towards leukaemia.
‘My heart skipped a beat. I felt sick and burst into tears. I thought: “He’s only four, children don’t get cancer”.’
‘The nurses asked if I wanted to call someone and it dawned on me that I was the only one that knew. Toby was busy playing with his tablet so I took the opportunity to hide in the en-suite to phone my husband and break the news to him.’
Toby immediately began intensive chemotherapy for a month in hospital, before continuing treatment at home. He returned to hospital every 12 weeks for tests.
Nikki says: ‘We told him his blood wasn’t working properly and he needed medicine to make him better.
‘He did really well. Although he lost his hair and was tired, he didn’t have any scary side effects.’
Treatment went so well that Toby was classed as at ‘low risk’ of a relapse, and he managed to start school alongside his year group, in September 2022.
Nikki says: ‘He did so much better than anyone thought he would. The only hiccup we had was in winter 2023 when he caught chicken pox and needed to go to hospital.’
Nikki, who has always loved the festive season, says that Christmas 2022 and 2023 were spent ‘very normally’. She adds: ‘It’s big in our family, it’s more exciting even than birthdays. Everyone comes together and we do all the Christmas traditions: watching a pantomime, Christmas lights, seeing Santa.
‘We got to spend those two Christmases at home, surprising Toby each morning with Elf on the Shelf and visiting Father Christmas.’
On Mother’s Day 2024, Toby rang the bell to signal the end of his treatment.
Excited to rebuild their lives, the family went to Disneyland Paris and they enjoyed a summer holiday at Butlins in Bognor Regis, free of medications and worry.
But when they returned home, Nikki noticed lumps on Toby’s head.
She said: ‘I thought it was weird as he hadn’t banged it, there were just these lumps.’
In the days that followed more lumps started appearing – a list of possibilities ran through Nikki’s mind from insect bites to ingrown hairs. Eventually, she rang Toby’s oncologist who arranged an ultrasound.
Nikki continues: ‘I was expecting them to say there was fluid there, but it turned out that the lumps were solid.
‘That was when I knew it was some sort of cancer. It was devastating, we’d felt free of his illness but now it was back.
‘The doctors tested Toby’s bone marrow and the lumps and found leukaemia cells.’
The family reeled from the shock of Toby relapsing so soon after his treatment. Nikki says, ‘It’s been difficult to get our heads around it. Last time, he looked ill, but this time he doesn’t. It’s really hard.’
Toby’s treatment was originally scheduled to begin on his birthday. Thankfully, this was able to be rearranged and Toby was treated to celebrations and days out, ahead of the next phase of his cancer journey.
The family went to Barry Island, Cadbury World, and had meals out, making lots of special memories together.
In September, Toby began taking paediatric oncology drugs, and this month, he will be admitted to Great Ormond Street Hospital to begin chemotherapy, radiotherapy and immunotherapy. He will then have a bone-marrow transplant days later.
That little bit older, Toby is more aware of what he’s going through now.
‘This time he understands what the word cancer means,’ says Nikki. ‘He knows his poorly cells aren’t working again, and he will have different medicine this time.’
Nikki says, ‘In total, he will be in hospital for two months, some of it in isolation.’
Toby needs to be isolated because he will have no immune system as a result of the treatment, making him at a high risk of catching infection, which could be life-threatening.
This means that the family will be forced to split up, with Nikki and Ollie taking it in turns to be at the hospital with Toby, or at home with Sophie. Unfortunately sister Sophie will not be able to visit her brother for the first three weeks of his hospital stay due to the risk of infection.
But the family have still made an attempt to get into the Christmas spirit. They put their decorations up on November 16 before Toby’s admission, and they won’t take them down again until he comes home in February.
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Nikki adds: ‘We’ve already been to see Santa and made sure to tell him where Toby would be, so he knows where to deliver the presents – he’s asked for Nintendo games, Robux and a laser game.
‘We’ll do Christmas dinner when he comes home again too.
‘On the day, we’ll Facetime Ollie and Sophie who will be at home with family.’
The family hopes this will be the end of Toby’s treatment, although it can take up to 18 months to recover fully from a bone marrow transplant.
And as December 25 draws near, Nikki asks people to take a second to think of others who might find Christmas tough this year.
She says, ‘Please get in touch with people going through a hard time.
‘Sometimes it can feel a bit out of sight, out of mind. This Christmas, please reach out to others.’
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