Support Families Who Have a Terminally Ill Child

My job is most difficult when a child dies, or when a family are told there is no further treatment to help their child. It makes me sad seeing families break up due to the stress of the situation, but I know that the support I can give will help them to make the most of their last days, weeks or months together.

A few years ago I supported a 13 year old girl, Elizabeth, who was suffering from terminal cancer. She was the same age as my daughter, so it really hit home personally to see what Elizabeth was going through.

As Elizabeth got sicker, couldn’t attend school any more, and she quickly lost touch with a lot of her friends. The ones who did visit her at home or in hospital, she felt she had nothing in common with any more. She couldn’t join in with conversations about trips to the cinema or into town on a saturday with friends. She became very withdrawn and was really very lonely.

My support for Elizabeth enabled her to be a proper teenager and experience all the things she should be doing. We would go to the cinema, go clothes shopping and get our nails done together. When her friends came to visit, instead of sitting awkwardly she could now join in and show them what she had been buying in town, saying she went with her 'best friend'.

Towards the end of her life, Elizabeth opened up to me about the fears she had about dying, but was most worried about leaving her mother and how devastated she would be. She told me she would like to leave presents for all the members of her family to be remembered by, so during the last few weeks of her life we spent time shopping to collect special presents for each family member. She made a Build a-Bear for her mother with a personal, tape recorded message of her voice inside, and we spent time hand-painting pottery and making jewellery for her grandma and aunties.

After Elizabeth died, her mother told me that I had allowed Elizabeth to experience a real teenage life, although a very short one. It comforted her to know that Elizabeth had managed to life as normal a life as possible, almost to the very end, and that she hadn’t missed out on those seemingly simple experiences that most of us take for granted.

Elizabeth’s support was made possible by kind donations to Rainbow Trust, without which I couldn’t provide this wonderful support to children like Elizabeth. I am grateful to everyone that has enabled me to do such a difficult but rewarding job. 

Emma was five years old when she died from Leukaemia. She had spent the previous nine months in hospital. Her family was supported by Family Support Worker Steve and Family Support Volunteer Worker Annabel. Emma’s mum Charlie explains just how hard things had got: “Before Rainbow Trust it was really hard, I never got a break and had just no time out plus my other children weren’t getting the attention they needed. It’s hard to give your sole attention to children when so much of it is focused on your sick child”.

Steve and Annabel would take Emma’s elder sister Amy–Louise and brother Sam out for the day and would also provide emotional support to Charlie during those difficult months.

Emma chose to spend her last days at their local hospital and was taken there on Christmas Eve. Charlie remembers: “She had 100 visitors that night, including Annabel. But it was only Annabel that Emma allowed to stay in the room. This helped me massively as it showed how much she trusted her and allowed me out to speak to the other visitors.”

Emma died on New Year’s Day.

Rainbow Trust has continued to support the family after Emma’s death. Steve and Annabel helped Sam and Amy-Louise read at the funeral and Steve also read Charlie’s words for her as she was too emotional to do it on the day.

Since Emma’s death, Charlie has found it hard to leave the house and often has panic attacks if she does. Charlie says, “it’s mostly because for 2 years I didn’t have any time for myself, I just needed to stop and pick myself up and I decided to just stay indoors to do this.”

However, Rainbow Trust has helped maintain a sense of normality in the house. During the summer holidays Steve has taken the kids out for breaks and taken them swimming and Annabel will spend time with Charlie and talk to her.

Charlie describes how important this support has been: “You’ve had no life bar the hospital for two years and then when Emma died, it stopped. I had no idea what to do; looking after Emma was my life. They haven’t just helped life have some normality; they are a life-saver. That time after the death, life goes on, friends disappear, go back to work, but Rainbow Trust are still there.”

Rainbow Trust has also helped Amy-Louise and Sam cope with Emma’s death as Charlie explains: “The kids have no idea what to do with the aggression that they have from grieving, they have a psychologist who comes but Steve and Annabel will take them off separately when they need it or together if that is best”.

Charlie could not be more grateful to Steve and Annabel: “For me the support was really important at the funeral and leading up to when Emma died. I’ll never forget that. That is support; that is what I’m talking about.”