My child's having treatment

Luke and Tanya Johnson's eight-year-old son, Liam, has been having treatment at Birmingham Children's Hospital for a Wilms' tumour, the most common form of kidney cancer in children. This is their story, as told by Luke:

"The worst thing was the two weeks between Liam having a biopsy and the diagnosis. We were in limbo and felt so helpless.

But when we saw the consultant, Dr Dave Hobin, on the day of diagnosis, he was really positive. He explained the treatment plan, what would happen and what to expect. Liam had his first dose of chemotherapy that day.

He had chemo once a week for four weeks, then a week's break and then an operation to remove the tumour and the kidney. Since then he's had more chemo to ensure all the cancer has gone.

We are nearing the end of Liam's treatment now – it will have been about 16 weeks – but it's still very strange and surreal. It's nothing you can imagine until you go through it.

Psychologically, taking the tumour out was a really big thing. That's what we were waiting for.

As well as the emotional side of it, there are the practical things. Coming to the hospital from Lichfield, where we live, nearly every week is very time-consuming. Sometimes, if Liam's had a temperature, he's had to stay in hospital for 48 hours. One of us stays with him constantly, while the other is at home with our younger son, Alfie, who's six. Alfie's been fantastic throughout this. He's had lots of one-on-one time with his grandparents, but even so he's been a bit insecure.

Our employers have been great. Work gave me three weeks off when Liam was first ill and since then I've been using holiday entitlement and flexi-time to fit around Liam's treatment. Tanya's taken unpaid leave from her job. It's being kept open for her although she doesn't know when she's going back.

What's odd is that alien though this all seemed before Liam was sick, it seems almost as alien now to be envisaging going back to a normal way of life, even though it's been a short space of time.

Liam has been brilliant. He's been upset a couple of times, but he's dealt with it better than Tanya or I would. Having said that, I do think he keeps some of his feelings in because he doesn't want to worry us.

What has been really helpful to him, though, is the play specialist at the hospital. To begin with I thought the concept of a play specialist was a bit 'hippy', but when we met her she was absolutely amazing. She sat and talked to Liam about the operation and was able to help him with any fears he had. One thing that worried him was having a catheter, so she brought one along to show him. She made a huge difference.

The other support staff, including the outreach nurses and CLIC Sargent workers, have also been amazing. There have been times, when Liam's been sick, that the little everyday issues you would normally take in your stride seem like major challenges: it's at these times the support staff have made things so much easier for us.

We also can't emphasise enough how good the care has been throughout Liam's treatment. All the staff – the day care receptionist, day care nurses, ward nurses, cleaners, porters, doctors, registrars and consultants – have done an incredible job. There has been no point in his treatment that we've thought there could be any better place for Liam – and that's down to the people and how much they put in to what they do.

Of course it's been very hard to see our son poorly; he became quite frail before the operation and lost nearly 4kg in weight. But after the surgery was over, he seemed more himself.  Now, the familiar sparkle is back in his eyes and he's even started arguing with his brother again – a sure sign he's getting better!"

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