Nikki Knight and her husband Ollie had always kept their family close. But, when their son was diagnosed with cancer, they were not only devastated but stressed, overwhelmed and often forced to be apart. She tells us how they got though it - and how she's now trying to help others.
Preparing for take-off, I turned to my husband, Ollie, 41, and smiled. Together we watched as our children, Sophie, 11, and Toby, six, giggled with delight as our plane climbed higher into the clouds. It was May of this year, and we were finally on the trip to Disneyland Paris we had always dreamt of.
The kids had never been on a plane before, and it was the adventure of a lifetime. "Will I really get to meet the Avengers, Mum?" Toby asked, excited. It was hard to believe that only two years earlier, I’d been worried my little boy might not live to see his next birthday. But somehow we’d made it through, and while at times our family felt disconnected, we are now stronger than ever.
When Toby was born in September 2017, he completed our family. We already had Sophie, then four, and in the first few years after he arrived, life seemed to move at 100 miles an hour as Ollie and I juggled our jobs with caring for the kids. Toby grew up to be such a lively and talkative little boy who loved climbing trees and sharing cuddles.
He had such a strong bond with his big sister, who helped him learn to ride his tricycle. But shortly after Christmas 2021, Toby, then four, suddenly became ill. He was exhausted, feverish and on New Year’s Eve, he tested positive for COVID-19. When the isolation period had finished, Toby didn’t seem to get any better, and he still had a fever.
Then in early February, I noticed a meningitis-type rash on his thigh. Ollie was at work as a secondary school teacher so I sent him a photo. "This looks worrying," I said, explaining how it didn’t fade when I did the glass test. Not willing to take any chances, I took Toby to A&E, while Sophie was still at school.
Toby was sent for several X-rays and extensive blood tests. We waited hours for the results, until a doctor came to see me. "It’s not meningitis, but I’m afraid that all the signs are pointing towards leukaemia," they said. As Toby lay sleeping in the hospital bed, I started to cry. "But he’s only four years old," I wept. "I don’t understand." The doctor explained that Toby would need to be transferred to a specialist oncology ward at the Bristol Royal Hospital for Children.
We both cried as we watched over Toby sleeping in his hospital bed - blissfully unaware of how poorly he was
I felt sick as I called Ollie to share the devastating news. I struggled to even say the words aloud and when I finally got them out, Ollie was silent with shock. Later that evening, after Ollie arrived at the hospital, another consultant talked to us about Toby’s prognosis. They explained Toby had a strong chance of survival but there would be several years of chemotherapy ahead. We both cried, and as we watched over Toby sleeping in his hospital bed that night, blissfully unaware of how poorly he was, the pain was overwhelming.
More tests revealed that Toby had acute lymphoblastic leukaemia, a rare cancer that affects the blood and bone marrow. We didn’t want to scare him, so we tried our best to prepare him. "Your blood is poorly and you need lots of medicine to make it better," I said, gently.
Pandemic restrictions meant Sophie couldn’t join us in the hospital and it was so hard for us to be separated. "Is my brother going to die?" she asked us one evening, upset. I reassured her that Toby’s doctors were doing everything they could.
Every conversation was centred around our son – he was all we could think about.
Toby began chemotherapy on the same day as his formal diagnosis. Our life became a series of appointments and journeys back and forth to hospital. With all of the stress and worry, Ollie and I didn’t speak about anything else. Every conversation was centred around our son – he was all we could think about. Ollie was signed off work with stress and I was signed off for a year from my job as a financial assessment officer for the council.
When we were at home, we’d sit there in the evening with the TV on, but neither of us were watching it - we were both just deep in thought about Toby. Conversations over a cup of tea in the morning were now all about Toby’s hospital appointments and when we were at the hospital, our focus was on him.
Toby couldn’t be left alone and I was the only one trained to administer his oral chemotherapy at home. He needed to spend lots of time in bed, so we’d play games together and watch films and I’d paint a positive smile on my face. But when I was with Ollie, I didn’t need to pretend. Instead I could cry into his arms if I was feeling worried, or just sit in silence without feeling pressure to talk.
Toby’s cancer diagnosis was certainly testing our strength as a family as we’d gone from a family who spent lots of quality time together – whether it be days out, trips away or movie nights on the sofa as a four – to suddenly being separated.
While I was with Toby, Ollie took on more of an active role with Sophie, doing the school run and helping with homework. I felt so guilty that I was being forced to put Toby's needs above my daughter’s. It wasn’t fair on her, so every fortnight, I made time for us as mummy and daughter and we would go shopping together, or to the cinema.
We’ve all learnt how life can change in a moment but together, we have found our way out of the darkness
"If our family can survive this, we can survive anything," I promised Ollie one evening, when we were talking about our hopes for Toby's recovery. A year after starting chemo, Toby finally began to feel stronger and his appetite improved. And regular blood tests revealed that daily chemotherapy was helping rid his body of the few remaining leukaemia cells that were left. To celebrate, we took a family trip to Scotland, and for Toby’s fifth birthday, a charity paid for us to go to Legoland Windsor.
Finally, in March 2024, Toby was invited to hospital to ring the end-of-treatment bell. Both children had the day off school, and we presented Toby with a specially made chocolate dinosaur cake. "You’re the strongest, fiercest little dinosaur," I told him proudly. Taking the kids to Disneyland two months later really was the best way to reconnect as a family, as we all spent quality time together as a four for the first time in ages. Ollie has never been one for holding hands, but now, when we fall asleep together at night, I'll often have his hand in mine.
At six years old, Toby is in remission and his feeding tube has been removed. He still has regular check-ups and his long-term prognosis is positive. We’ve made it through the lowest time in our lives and I feel so lucky that Toby is healthy and thriving. We’ve all learnt how life can change in a moment but together, we have found our way out of the darkness, and for that I’ll always be grateful.
Since her son’s diagnosis, Nikki has become an expert in childhood cancer, and how it impacts day-to-day family life. She is passionate about educating people and supporting parents who find themselves in the same situation - and started a blog her Unicorns, Dinosaurs and & Me to share her experiences. Nikki has also written a books aimed at helping parents to take care of their own mental health, while taking care of a sick child - 5 Minute Gratitude Journal for Oncology Parents (Amazon, £8.99)
