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.

When Hope was just a year old, she was diagnosed with severe asthma, severe angioedema, inflammatory bowel disease, seizures, and coeliac disease. These are all conditions with unpleasant symptoms and have resulted in well over 200 hospital admissions, physiotherapy four times a day, and 22 daily medications.

As Hope admits, life has been a real struggle, as she is so restricted by all her conditions. Friendships have been tough to maintain when she has been unable to get out and about, and coping with a world that is not always accepting or understanding of illness has been quite a challenge for her too.

Help for Hope and her family came in the form of a Rainbow Trust Family Support Worker. Amanda has supported the whole family for several years, through some very difficult times. Visiting Hope either at the hospital or at home, she helps her with arts and crafts or simply chats with her. As Hope says, “Amanda makes it fun, she’s great company that isn’t my mum!” Now in the sixth form, Hope has made some great friends and would like to work with children and be a teacher if she can.

For Hope’s mum Sharon, having Rainbow Trust there for them has been a lifeline, supporting the family both emotionally and practically - especially the latter – particularly with hospital appointments. Having so much information to take in, the addition of someone else being there to listen and hear what the doctors are saying is invaluable. Just having Amanda to keep them company makes the sometimes very long waits at the hospital more bearable for Hope and Sharon.

For the rest of the family, Sharon’s husband Jim and Hope’s three siblings, Elise, and her two brothers - both of whom have autism and learning difficulties - the support from Rainbow Trust has been vital. Sometimes Amanda will sit with Hope in hospital so Sharon can be at home with the boys, which also means that Jim doesn’t have to take time off work. At other times Amanda takes Elise out for playdates or simply sits and talks to her, giving her some respite from her role as a young carer.

For families like Hope’s, Rainbow Trust has provided some desperately needed support. Thousands of other families with a very sick child also need that support. Funding for more Family Support Workers could bring help to them as well.

• Hope Farren - revised 09May19.docx (DOCX)