Posted on Thursday 10 June 2021

Samuel’s story: “I just asked if it definitely was, if they might have mistook it for something else”

“I wanted to ask ‘is he going to die?’ but I didn’t want to say the words”

It was only a few bruises, thought Mum Amy, who would often catch Samuel falling over or bumping into other children while he ran around with his toys like a typical toddler.

Within a couple of days, they were all over his legs. These weren’t just usual toddler tumble bruises, Amy thought it was best to get him seen.

“I thought I was wasting the GP’s time…it was near Christmas, it was a busy time of year, he was in full-time nursery and he was just tired.”

A 5pm appointment after nursery became a rush to the local hospital, and by 2am Mum Amy and Dad Matt were pulled into a side room to hear the news that their son, Samuel, had leukaemia.

“I just asked if it definitely was, if they might have mistook it for something else, as in are you sure it’s definitely leukaemia or could it possibly be something else.”

Once they received the diagnosis, it was all go. Samuel was transferred by ambulance to the John Radcliffe hospital in Oxford, 40 miles away.

Over the next few days, Samuel started his chemotherapy treatment, which involved lots of needles for a 2 year old who had never stayed in hospital before.

“It kind of sunk in to him that every time that somebody who wasn’t us came into the room, they were going to do something that might not necessarily be pleasant so he started reacting negatively towards all the medical staff, understandably. As he’d only just turned 2 at the time, we couldn’t make him understand that the medical staff were there to help him.”

Getting Samuel to take his medication or eat something became a struggle. Amy would try her best to get him to eat but the weight dropped off of him.

“He was bed ridden and skeletal, he couldn’t walk because he’d lost so much weight and muscle mass.”

Only one parent could stay on the ward overnight with Samuel. Amy and Matt would alternate driving the long car journey home to quickly have dinner, go to bed and wake up 5am the next morning to get back to his bedside.

After Christmas, Samuel’s family were given a room at CLIC Court, a nearby Young Lives vs Cancer Home from Home. A free place for families to stay while their child is on treatment.

“For us, it was literally a place to crash and it meant that instead of leaving at 6pm and driving back to Swindon, we were leaving at 8 or 9pm and going straight to bed over the road, but without the added exhaustion of driving an hour each way.”

The family were also supported by Grace, their Young Lives vs Cancer Social Worker, to help with the impact that a cancer diagnosis brings to your everyday lives.

“I don’t know how we would have done anything without her…She’s helped us to talk to our employers and to talk to nursery. She will be involved in any conversations with any organisations that we want or need and her wealth of knowledge and experience was invaluable. She’s been there for us every step of the way.”

Now, Samuel is home and doing well – in Amy’s words, ‘a cheeky three year old’! He will continue on maintenance chemotherapy now until 2023 but is back in nursery which he loves, Amy and Matt are back at work and with the help of Young Lives vs Cancer, they feel ready to take on the next step.

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When Lauren was diagnosed with leukaemia in 2018, her and her family stayed in a nearby Young Lives vs Cancer Home from Home and again when she relapsed a year later