Posted on Monday 6 September 2021

Dylan’s story: “No matter what else is going on, his treatment is always going to be the most important thing for three years”

“We got rushed straight through into our own cubicle. While we were there the doctor came, looked at him, did all the checks, went out the room and came in and said ‘look, to be really honest with you we’re checking for leukaemia’.”

Rachael was sitting in the room with her two year old son, Dylan. His Dad wasn’t allowed to be there because of Covid-19, so she heard the news alone. The doctor said it might not be, but wanted to give her warning in case it was.

“Then they were saying to me that they were going to allow Dad to come up. I rang him and said we can both be there, come up. Suddenly I though ‘why are they letting us have two people? That’s not a covid thing. So it’s going to be bad news’.

“I was in the room and they came to me and said ‘we wanted to wait until you and Dad were both here together but actually we really need to start treatment’ so they told me while I was by myself. But I knew, I knew anyway.”

Rachael said Dylan had always been a rough and tumble boy, playing on his trampoline and riding his bike but suddenly he started getting bruises. Rachael and his Dad Russell were questioning it themselves but then the nursery started asking about it too. Then, he started to feel unwell and was off his food too. One Sunday morning things got worse quite quickly.

“He wasn’t unresponsive but just in and out of sleep, which is unlike him. He was sat on our lap watching TV and couldn’t really play with his cars or anything like that. So, we rang 111.

“While we were waiting they said to check his temperature and to check his skin on his tummy and a rash started appearing on his leg. They sent an ambulance straight away.”

Once they were given the news, Dylan had to start treatment almost straight away.

Dylan was admitted for two weeks to start his introductory chemo, he later had six months of chemo and lumbar punctures.

Dylan was diagnosed in January 2021, so the majority of his treatment took place during the pandemic. Even when restrictions started to lift, Dylan and his family wouldn’t go out as they didn’t want to risk picking up an infection.

For months, Dylan would only ever leave the house to go into hospital for treatment. He only knew home and hospital, which meant getting into the car just meant going to hospital again.

“He got to the point where he wouldn’t even put his shoes or coat on because he knew that his shoes meant he was going in the car, to go to hospital.”

As well as the emotional upset of getting into the car to go to hospital once more, sitting down was also painful for Dylan in the car.

“One day he was in so much pain with his lumbar puncture and his bum being really sore that he couldn’t sit down, we couldn’t strap him into the car seat he was screaming. We got to the end of the road and we were like ‘he’s got to go to hospital, he’s got to have his chemo, we can’t get him in the car seat he’s in physical pain, what do we do?’

“We rang the hospital and we said this is the situation, can we reschedule because he’s in too much pain to be in the car seat. They said ‘we’ll send an ambulance, because he has to have the chemo at this day at this time, it’s in the plan’ That shocked us with how important every single bit of the treatment is, it can’t just be arranged for the next day.

“That made me think so if it was his birthday today we couldn’t just say ‘could we come for chemo tomorrow it’s his birthday’ – no matter what else is going on, if one of us isn’t well or got something planned, his treatment is always going to be the most important thing for three years.”

Rachael and Russell have been supported by a Young Lives vs Cancer social worker since Dylan was first diagnosed. With the mounting cost of petrol and parking, the couple were seeing a big impact on their finances.

“If there’s two of us available, and obviously only one of us can go in, we’ll drive up there and we’ll drop the other one off so all journeys are in the car so it’s petrol, but it’s not parking. But then when I’m at work he’ll go by himself, he went the other day and he was there for a few hours and it was £20 parking. We’re going three or four times a week sometimes.

“I asked if there is anything because it’s getting a bit much and obviously it’s at a time when we’re out of work and not got the money coming in so our social worker sorted us out with a grant. That was good because it came at a time when we didn’t have any other financial help.”

Due to the lockdown, Rachael and Russell only ever spoke to their social worker over the phone but they always knew they could get in contact if they needed help.

“As soon as I have a question, I text her and I get messages saying ‘how is he? Are you out of hospital yet?’ I think it was from day two, we got given somebody so it’s been the whole time. She’s helped me with all the documents.

“She’s got us application forms for different charities – just the things that it would take me a long time to do myself and find out about.”

Now, Dylan is still on treatment and has to be careful of infection risk but he will be joining his friends and starting back at nursery this September.

“We’re not sure how it will look and are apprehensive about sending him with all the children and the infection risk but we have to balance his need for normality.”

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