Supporting Terminally Ill Children

Rainbow Trust has been supporting Evie and her family for two years. This is her story.

My name Is Evie and I’m 13. I was diagnosed with Hodgkin Lymphoma cancer when I was eight years old. After long years of treatment after treatment, I finally went into remission which I’m so grateful for. I fought cancer, and now I’m fighting the after-effects of the toxic treatments I had to endure. As well as going through physical struggles, it also takes its toll on suffering emotionally and mentally.

Feeling isolated: I’m unable to walk longer than a few meters at a time and I’m in a wheelchair. I have home schooling and I go into school for an hour for a lesson with a teacher. I also try to go into school once a week at lunch to see friends but it’s very exhausting. It gets lonely being at home and not being included at sleepovers and meeting in town because, even though I might not be able to go, it’s the thought of inviting which counts.

Emotions: If you’re fighting a serious illness, it’s common having emotions all over the place. I would be happy one moment, sad or angry the next. The most common emotions I experienced was feeling low, anxious, scared and angry at times! It’s completely normal and it does get better.

Understanding mental health: I rarely talk about how I feel through social media, but it is important for me to help others, whether this helps you realise you aren’t alone with feeling these emotions.

Does anything help? I’ve found there are small things that may make an impact. With anxiety, I’ve found writing your thoughts down sometimes helps. Also, things like scrapbooking and bullet journaling are helpful to relax and keep your mind busy.

If you could find what’s important to you, surround yourself with that and remember you’re not alone.

I’ve found knowing people with cancer and making friends with those people gives you a type of support which you can’t get anywhere else. You can support each other and understand what each other is going through.

The support from Rainbow Trust

At Rainbow Trust we support families who have a child with a life threatening or terminal illness and are in the greatest need. Our Family Support Workers provide a life line to these families and children. We support the whole family including parents, carers, the unwell child, brothers, sisters and grandparents. They bring support and help to families who so desperately need it at home, in hospital and in the community.

Families are overwhelmed with grief and worry about their child’s illness and getting them to hospital appointments that may be hundreds of miles away, all the while trying to keep life as normal as possible for their other children. Our Family Support Workers support the whole family with whatever they need so that families don’t have to manage alone.

Rainbow Trust’s Family Support Workers can give more than just logistical help, they also provide that emotional support that is so crucial for families struggling keep it all together.