Supporting Siblings of Terminally Ill Children

When Phoebe was 14 months old, I noticed a rash on the back of her legs. Over the next few weeks Phoebe was admitted to hospital for various infections before a consultant sat us down and told us that Phoebe had leukaemia. Our whole world came crashing down.

The following day she was sent to the oncology ward where she spent the next two months as she was so poorly. My husband couldn’t go back to work as we had our three year old son, Ollie, to take care of. We tried to keep things normal for him so we took him to school but I couldn’t spend the time with him as I just wanted to be with Phoebe in the hospital. Nathan, my husband, would stay with him at home and I’d stay in the hospital with Phoebe. When I needed sleep, I’d come home and Nathan would stay in the hospital with Phoebe.

Our nurse put us onto Rainbow Trust Children's Charity – she could see we were struggling with being in the hospital and looking after Ollie. Nathan had to go back to work so it was hard.

We were introduced to Rainbow Trust Family Support Worker, Amelia - I was so happy for the help. Ollie goes to nursery two days a week so on the days he’s home, it’s a struggle. I felt like I was pushing him out which I hated but I needed to be with Phoebe. Everything was about Phoebe. Ollie would cry a lot and when he didn’t get his way, he’d kick off. I didn’t know what to do for the best so when we were referred to Rainbow Trust, I was so relieved.

Ollie was only three and he didn’t understand the situation so Amelia particularly dedicated quality time to playing with him. They got on the minute they met. He still gets so excited when I tell him she’s coming. It’s such a weight off my shoulders knowing there is someone looking after my little boy so that I can be with my sick child. Ollie loves Amelia and I think nothing of leaving her a key to collect him from school and take him home to play and then she brings him up to the hospital so he doesn’t have to be there too long.

He’s much happier now, he’s more confident and he’s more settled. Having someone there just for him has made a big difference. He can talk to Amelia and he can play with her when I am not around. She is there for him. Having someone there who you can trust with your child is amazing, I don’t know what we’d do without Amelia now. She’s just brilliant. If I know Phoebe has an appointment next week, I know I can call Amelia and ask her to fetch Ollie from school and that is such a relief for me.

Rainbow Trust take care of you and your family, not just Phoebe but Ollie and me as well. Amelia is just brilliant but I think more people need to know about Rainbow Trust. I didn’t know about them before Phoebe got sick. Amelia is just wonderful; we couldn’t do without her now.