Artie’s story: Diagnosed with a brain tumour at three years old

Artie was diagnosed with a brain tumour at three years old and had to go through months of treatment at Bristol Children’s Hospital, 75 miles away from his family home in Dorset. His family would travel 150 miles round trip to get to hospital.

Artie’s dad and brother often stayed at Sam’s House, a Young Lives vs Cancer Home from Home close to the hospital, which meant they could see Artie while he was having treatment away from home.

“Artie was going off his food and becoming tired. Then slowly he started to become a bit unbalanced. We’d go on a walk and he’d make me carry him, he’d say ‘I’ve got tired legs’. Sometimes he’d be fine for a week or two – and then one day he’d be tired, in the end he used to wake up in the mornings and he would be sick. Then as time went on, he started complaining of headaches especially if he’d overexerted himself.. One day he fell down the stairs and I thought it was his big brother had pushed him – I went mad and Fred was adamant it wasn’t him, months later when I knew, I felt so bad. As time went on, these bursts would get closer together and more and more often and he’d be more tired and being sick every morning. I knew something was wrong obviously.  We took him to the doctors a few times, phoned 111 a few times, nothing really came of that.

“In the end I took him to A&E. When we got to there he was absolutely fine. They were like ‘do you think he’s putting it on’ and I said categorically no, ‘you have to help me, I don’t know what’s wrong with him’. They checked him over, all the normal observations, they did an ECG. Then two days after that we went back to the hospital for an eye test that’s when they discovered he had swollen optic nerves in both eyes – the lady that was doing the test asked if we were an inpatient and I said ‘no’ but then alarm bells started ringing, ‘why does she think we’re an inpatient?’. Then you come home and you google it. We went back the next morning for an MRI.

“When he came out of the MRI scanner and we were walking back up to the ward I said to the doctor ‘did you see anything?’ and he didn’t look at me and he said ‘we’ll talk about that when we get back upstairs’ so then I thought ‘oh god’. One of the doctors said ‘have you got a husband or partner?’ and I said ‘yes my husband’ and he said ‘you need to ring him now, it’s an emergency’ I rang Sid and he rushed to the hospital, they took us to a side room. He said ‘your son has a massive brain tumour’ that’s word for word what he said. I think I threw up, it was an out of body experience. My husband cried, I didn’t cry I just felt so sick and all the blood drained from me, I felt dizzy.

“We jumped in an ambulance and went straight to Bristol, blue lights the whole way. We got to Bristol, we went into triage just off A&E – they were asking us lots of different questions, me and Sid were rabbit in headlights.

“Once they removed the tumour the surgeon was pretty sure – but he couldn’t say – it was medulloblastoma from looking at it but it hadn’t been to the lab yet – so we didn’t find out for five weeks 100% what it was.

“He had radiotherapy for six weeks, then we had a six week break where we got to come home, I think we were in Bristol for 12 weeks in total up to this point – then it was start of chemo. It was eight rounds of chemo and the longest break between them was about four weeks.

“My mother-in-law lives next to us on the farm so during the weeks when Fred, Artie’s brother, was at school, he would stay at home with her and at weekends he’d either come up to Bristol or be at home with us or be with my Mum and Dad. It was really tough on him. Half of my worry this whole time has been about Fred.

“It’s about 75 miles from home to hospital and we’d be doing that every week/every two weeks. You want to think ‘it doesn’t matter, finances are the least of our worries’ but when you can see you are spending £100s on food and parking tickets when you’ve got your mortgage, it’s really soul destroying.”

Artie’s family stayed in Sam’s House throughout his treatment to give them a place away from the hospital and also so his older brother Fred could come and visit too. Their Young Lives vs Cancer social worker helped with grants at the start to help with some of the financial impact and helped to apply for benefits too.

“It’s lovely at Sam’s House, it’s nice and quiet – there was always people there in the day if you need anything. They leave you to it, nobody’s in your space – you can mosey on in, have a rest, have a shower, make food, you’ve got time to yourself from the craziness from the hospital. When Artie was feeling up to it we’d all go up there for dinner and he’d play in the toy room there. Fred came up at the weekends. It’s so chilled up there, you can go up there to chill or to have a chat, it’s a lovely space to be there.

“Lorna, our Young Lives vs Cancer Social Worker was really helpful, she helped me fill out all the DLA forms – I couldn’t think straight let alone concentrate on filling out massive forms, she would sit with me and help me.

“Our journey has been made so much easier and happier and much more positive with the help of Young Lives vs cancer. We would have been randomly stuck in Bristol with nowhere to go or I would have to have checked into a hotel and had to pay for that. No help or signposts of what to do and where to go, emotional support, financial support. I don’t even want imagine what it would have been like without them, it would have been awful.

“I didn’t know who Young Lives vs Cancer were when we first got to the hospital and I didn’t know what way was up – I thought ‘i don’t have time for this’ but we wouldn’t have been able to do this without them.”