Support Families Who Have a Terminally Ill Child

Leanne, a Family Support Worker from Rainbow Trust’s North East team supports Darren and his family:

“Grace was 18 months old when she was diagnosed with a brain tumour. She’d been fine up until then. She was one of those children who went straight from crawling to running so when she started falling over, we thought she was just clumsy. She became less mobile and then she started having tantrums so we took her to a paediatrician but he couldn’t find anything wrong. It wasn’t until she was sick at nursery that she was rushed to A&E where they did a brain scan and we were told that Grace had a brain tumour. I was devastated.

“It all happened so quickly – she was diagnosed on the Tuesday and on Wednesday had brain surgery to remove the tumour. Watching her go through the treatment was really hard, the worst possible thing is you know it’s this terrible poison going into her body and it drained her. She was so tired.

“She needed ongoing treatment, and it wasn’t till further down the line that we started to struggle. I would stay at the hospital from 9am to 7pm then go home. My wife Fiona would then stay overnight so Grace wouldn’t be alone. Every morning we were exhausted.

“The hospital had a Rainbow Trust drop in group where we heard about how they supported families in our situation. Leanne now takes Grace out for a couple of hours to the park or soft play when she isn’t receiving treatment. It gives her some fun time and it gives Fiona and I a break to do housework, go shopping or even just sleep. It’s such a help, I honestly don’t know where we’d be without Leanne.

“I would definitely recommend Rainbow Trust and I have already. I’ve told people how fantastic and brilliant our Family Support Worker, Leanne is. We’d be lost without her. Talking to her is such a helpful release for us, she listens and the best thing is, she cares. She treats Grace like her own. I told someone on the ward the other day that the positive out of Grace’s cancer is Leanne and Rainbow Trust.”

Last year Rainbow Trust supported over 2,000 families like Darren’s, but there are still thousands of families that we could help with extra funding. Thank you for helping us to reach those new families. 

Michelle lives on the Isle of Wight. She is a single parent of two adopted children. Evan was adopted at just one week old. During the next seven months he was diagnosed by several doctors as suffering from severe colic. When the colic didn’t clear up, it was decided that he should have an MRI scan which showed that he was missing 80% of his brain tissue. It is suspected that he had a stroke while in his mother’s womb, which caused his brain to stop developing.

Evan is now four years old. He is completely immobile and totally dependent on Michelle. Michelle has been caring for Evan all this time without any support. Her home isn’t big enough to accommodate the hoists that Evan needs now that he is growing. She faces having to sell it and find suitable rented accommodation instead. Her local nursery nurses have offered some support but Michelle doesn’t feel comfortable leaving Evan with them. Evan also has a three-year-old sister, Emy, who misses out on play times and special time with Mum because she can’t leave Evan unattended.

I take Michelle and Emy to a local parent and child group and give morning support, twice fortnightly, to care for Evan so that Michelle can take some time out for herself. She is studying to become a massage therapist so that she can work from home to support herself while caring for Evan. It’s a big help for her to be able to study without having to worry about Evan for a while.

I also arranged a family stay at a hospice on the mainland so they had extra support and respite for a few days. As a single parent, Michelle told me the other day, “It has been lovely having someone to talk to, an impartial ear to unload upon and she has helped me to see the positive side of a respite stay at a hospice, not just for Evan but the whole family.”

Rainbow Trust will continue to support Michelle, Emy and Evan for as long as they need us. It isn’t clear what age Evan may live to, but our support will continue beyond, if necessary, and I will give them the chance to enjoy every single day together in the meantime.

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.”

The comprehensive support we give to grandparents and relatives is not provided by any other organisation.  When a child has a life threatening or terminal illness, they are affected too.  This year we helped grandparents understand complicated medical issues, cope with their grandchild’s diagnosis and if needed, supported them in their grief so they could stay strong for their children. 

Jeanette and Tony’s Story

Jeanette and Tony, grandparents of 13-year-old Jordan, have been supported by Sarah, one of our Family Support Workers since 2013.  Jordan has cancer.  She lives with her grandparents as her mother died in 2013.  Sarah supports Jeanette emotionally, she is someone for her to talk to and lean on.  Sarah also helps with Jordan’s transport to hospital appointments and takes her out to give her grandparents a much needed break.  

Grandparents are often forgotten, but we support them and the whole family for as long as they need us.  

“This devoted couple has experienced so much sorrow over the loss of their own child, but have selflessly put their grief aside and done everything in their power to give Jordan all she could need.” Sarah, Family Support Worker