Luke, now five, was diagnosed with a tumour in his bladder when he was just two years old. His mum Jess tells their story.
Once Luke started treatment, we didn’t come home properly again for three months.
His dad, Tim, slept on the ward, while Luke’s baby brother Euan and I shared a tiny hospital room, over two hours from home.
Billy’s House was somewhere safe for Luke to stay in-between treatment. Any problems and we could take him straight back to the ward. Luke was really poorly a lot of the time so being close to the hospital was important. Nurses suggested CLIC Sargent’s Home from Home, Billy’s House, across the road. Everything was clean and homely, and Euan and I moved in.
All the parents at the house looked out for each other, from a shoulder to cry on to sharing milk when you couldn’t get to the shop.
The staff were fab. I once put some washing on, then found it folded up with a note from ‘the ironing fairies’. Little things you really appreciate.
Tim didn’t feel comfortable approaching his boss about time off – he hadn’t been there long. Tamsin, our CLIC Sargent Social Worker, phoned and got things sorted so Tim could have some paid leave.
Tamsin also helped us sort out benefits like Disability Living Allowance. We were unsure how much information to include in the forms but she went through everything.
Luke is all right at the moment. I am grateful every day I get to see him laugh, run and enjoy life.
"CLIC Sargent provided that little bit of normality and comfort in the terrifying world of cancer."
Cai,11, from Swansea, was diagnosed with a brain tumour when he was just eight years old. His mum Jo tells their story.
When I heard the news I just went numb.
The operation was the hardest time, waiting and thinking something major must’ve gone wrong. Cai spent three weeks in hospital, then went back to have his port put in. He’d had enough of hospital, and developed a needle phobia which made everything very stressful.
Cai started chemotherapy and it was really difficult. Then Jane, our CLIC Sargent Nurse, came along and things finally started getting better. She developed a relationship of trust with Cai, discussing his treatment choices. She came to the house, saving us a 50-mile trip, giving us more time.
She was patient and helped Cai come round to the idea of having the needle. He would be mischievous with her, but I knew it meant he trusted her.
Before Jane, we didn’t feel like the different hospital teams were talking to each other and working together. We didn’t know who to talk to or to take questions to.
I had the sense Jane was talking to the doctors, explaining what we needed personally. That makes a real difference.
Cai’s treatment finished last December. He missed a lot of school and needed to catch up, and got upset that he didn’t understand some of the work. Jane has worked with the school to explain Cai’s situation so they can better support him.
I still go to Jane when I have questions or want to talk about anything. It is great to have that personal connection.
"Cai started chemotherapy and it was really difficult. Then Jane, our CLIC Sargent Nurse, came along and things finally started getting better."
Jennifer, from Blackburn, is 22. She was diagnosed with leukaemia when she was 20.
I couldn't take it in – I was too upset.
The first week at hospital was scary. I was then in isolation for six weeks, including my 21st birthday. I had eight months of chemotherapy. I really hate needles.
My CLIC Sargent Young People’s Social Worker, James, was brilliant. He offered support and information every step of the way. Without James I would have lost my house, and probably my job.
I didn't know anything about housing benefit or Personal Independence Payment. James went through the whole thing. He also helped me get a mobility car so my parents could drive me to hospital appointments.
James told me about other charities that help people with cancer. It meant I could get a new bed as mine was falling to bits. I was so ill that I was in bed a lot.
Because I'm still off work, I'm now on Employment and Support Allowance. James helped me apply for that too.
I’m now in remission and have been clear for three months. My employers have been good, and are now asking when I'll be back at work.
I work in a nursery running around after 16 children and I get exhausted quite quickly. There's a lot of paperwork and my head is still fuzzy, thanks to ‘chemo-brain'. James wrote to my employers to explain and let them know I would be off work for longer than I’d thought.
James really helped me know what to do.
"James was brilliant. He offered support and information every step of the way. Without James I would have lost my house, and probably my job."