Support Families Who Have a Terminally Ill Child

When she was 11 years old, Corrie, the elder of Kirsty’s two daughters, was diagnosed with a rare cancer. The closest hospital for her specialist care was 60 miles away. The family had moved to Cumbria just a few years before and had no family close by. They spent that year juggling family life with gruelling chemotherapy on their own, with little help.

Sadly the cancer returned when Corrie was 13. Life was full of chemotherapy, tests and taking bloods. Kirsty was up all night and getting very little sleep – she was exhausted. There was no-one to help, no friends, no relatives, and the hospitals didn’t want them. Kirsty realised she couldn’t cope. She and her husband Edward were exhausted, and she realised they needed help. After a desperate call to their social worker, two Family Support Workers from Rainbow Trust knocked on their door. “At first, I wasn’t happy at all to accept the help of Rainbow Trust. My children and my husband and all my family expected me to be strong.”

When they explained that they provided emotional and practical support for the whole family, the tears poured down Kirsty’s face with relief. The very next day, a a Family Support Worker arrived carrying a huge box with games, activities, books, colouring utensils and the children smiled for the first time in weeks. Kirsty had the first full three hours sleep in two months. As Kirsty remembers, “this was the beginning of a very important part of our lives.”

Rainbow Trust helped by taking Corrie and her sister to the park, or the cinema, or bowling. Kirsty says. “You become over-protective so you don’t dare do anything that might risk your child, obviously.”

“When Corrie had six weeks of radiotherapy, five days a week, our Family Support Workers did one of the 120-mile round trips every week. Otherwise I would have to go on my own and not be with my other daughter, or Edward would have to take the day off work.”

After Corrie had recovered and successfully passed her A-levels, she secured a place at university to study nursing, and decided to take a gap year to travel. Tragically she was drugged, abducted, assaulted and left for dead on the island of Ko Samui in Thailand, and she returned home shattered. Kirsty says, “To our amazement Rainbow Trust heard about this trauma and once again came to our rescue.

“Sadly, within a year, a new cancer along with the old one, reared its ugly head. Rainbow Trust were with us throughout. By this time our family and friends were almost too shocked to know what to say. We felt isolated and alone. I was so touched that Rainbow Trust stayed with us, as Corrie was 20 years old now. But her brother and sister were still in need of support, as were my husband and I.”

Corrie left university when the cancer was diagnosed as terminal. She declined further treatment and married her boyfriend just five weeks before she died. Kirsty says, “Rainbow Trust stayed close by us until we felt we could go on without their support. They helped me to plan and think about Corrie’s death. Without them, the whole process of grief would have been much worse and our family would have been less cared for. We would have more regrets. I certainly have fewer regrets.”

Thank you for supporting families like Corrie's through such tragic times. Your donations give more families access to vital emotional support for as long as it is needed. 

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.”