Supporting Terminally Ill Children

by Rainbow Trust Children's Charity
Vetted

My job is most difficult when a child dies, or when a family are told there is no further treatment available, but I know that the support I can give will help them to make the most of their last days, weeks or months together.

I supported a 13 year old girl, Elizabeth, who was suffering from terminal cancer. She was the same age as my daughter at the time, so it really hit home to experience what Elizabeth was going through.

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.

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

Thank you for supporting our vital work with your donations.

This Spring, 46-year-old David completed the Brighton, London and Milton Keynes marathons, on three consecutive weekends. David raised money for Rainbow Trust, who helped his family through the death of his daughter, Eloise. David first heard about Rainbow Trust when his daughter Eloise was diagnosed with a terminal illness. “My wife went into labour 10 weeks early and our twin baby girls were born premature, Eloise weighing in at just 1b 10oz and Naomi 2lb 5oz.”

At the time Naomi seemed the most sick of the two, suffering from a stomach infection. However, at one week old Eloise became seriously ill and was rushed to hospital where she was diagnosed with Necrotising Enterocolitis - a disease that affects the intestines. She had many operations, each one removing more and more of her intestines, and suffered two brain haemorrhages from all the operations, medication and treatments. It got to a stage where we just thought, enough is enough, no more. Eloise’s condition was terminal and we just wanted to take her home and look after her as much as we could, rather than see her spend her whole, short life in hospital.”

The hospital recommended Rainbow Trust and David, his wife and daughters soon met Christina from the Surrey Care Team. Christina visited the family once or twice a week overnight and watched over Eloise and her twin sister Naomi while their parents got some much needed sleep. During this time David describes Rainbow Trust’s support as a ‘God send’.

When she was 15 months old, Eloise died at home. David said: “I was trying to hold down a full time job and Eloise needed our constant attention. We learnt how to administer her medication and the complicated process of feeding her, but she needed care through the night. Just by enabling us to get a few nights rest a week, Christina’s help was immeasurable.”

When David turned 40, he signed up for his first marathon in aid of Rainbow Trust, and in memory of Eloise, as a way to fundraise for the charity which had provided much needed emotional and practical support to his family. This year’s race was David’s tenth London Marathon for Rainbow Trust. To date, David and his family have raised over £25,000 for Rainbow Trust – enough to provide over seven months of care from a Family Support Worker.

Each year David tries to come up with new challenges to keep the money coming in. “I’ve asked my friends and family for support so many times over the last seven years that I’m sure they must be getting tired of me! But I just keep plodding away, trying to come up with ideas and new challenges to inspire their continued support so the money doesn’t dry up.”

Jack on a family outing
Jack on a family outing

Jack was ten when he was diagnosed with a mitochondrial disorder. Most of Jack’s care fell to his mum, Dee, as his dad worked long hours to support the family. Jack had a younger brother, Luca.

Family Support Worker Bryan changed the lives of Jack and his family from day one. He arrived at a time when the family needed it the most, and they were at their lowest. Bryan made daily life more normal for the family, as he was quickly trusted to look after Jack as well as he needed to be looked after. Bryan’s hands-on support enabled the family to enjoy outings which gave them time to be a ‘normal’ family again.

Dee mum said, “It was like a ray of sunshine when Bryan came, full of vitality, enthusiasm, compassion and a great caring nature made him a winner in the household. There were always beams of smiles from Jack when Bryan arrived, and laughter around the house.

“We managed outings to parks and bowling trips, which have been a hit. He managed to combine all the skills of a companion, carer and playmate to both boys as well as a good listener to a worried mum. It was a huge relief that at last we could rely and trust someone who could look after Jack as well as we did. It is not easy to let your child be looked after by someone other than yourself when that is all that you have.”

Sadly, Jack died aged 16.

Rainbow Trust is the only organisation to care for families from diagnosis, during treatment, and if needed, through end of life care, bereavement and beyond.  This support is not available elsewhere. 

“There’s still that connection with Joe when Chris comes.  There isn’t anybody else that comes in who knew Joe before.”

Sue, Joe and Adam’s mum 

Joe’s story

In 2007, Joe, aged nine, started feeling sick.  A scan revealed a large brain tumour.  Most of the tumour was removed and chemotherapy and radiotherapy treatment was successful.  However, in 2012, the cancer returned in his spine and the following autumn, Joe was not able to walk and he stopped going to school.  His family was referred to Rainbow Trust for support. 

Chris, a Family Support Worker from our Swindon team began supporting his family.  Joe wanted to record the time they shared, so together with Joe’s younger brother, Adam, they made a photo book about their adventures. 

Joe managed to see the album finished, before he died earlier this year, aged 16.

Little Michael spent his first birthday in good health, it wasn’t until his mother took him home from his party that she watched him deteriorate in front of her eyes. He became extremely upset, and very lethargic and when she put him to bed, he screamed and wouldn’t settle. The next day Fran, his mum, took him to the doctor who found a rash which the doctor attributed to meningitis and a temperature. He was admitted to hospital and was put on a five day course of antibiotics.

Three weeks later Michael was readmitted to hospital after doctors found that he had a rare blood cancer that they hadn’t initially detected. Michael’s family was told the only cure was a bone marrow transplant. For this he had to be admitted to hospital for at least eight weeks. Unfortunately after his transplant he contracted a number of near fatal illnesses and twice, his mum and dad were told he probably wouldn’t survive.

Rainbow Trust Children’s Charity was introduced to the family just before Michael had his transplant. Before that Fran, Michael’s mum, had tried to put strategies in place to help her cope as she doesn’t have a family around her. Oonagh, a Rainbow Trust Family Support Worker, gave Fran the respite she desperately needed by sitting with Michael while he was in treatment so she could take a break or get some fresh air. After the transplant, Bryan, another of our Swindon based Support Workers supported Fran three or four times a week. “He’d come in at nine in the morning so that we could take a break, take a shower or just have some time to ourselves to refocus. He worked in terms of what we needed. Any help was fantastic!” says mum.

Michael was in Bristol hospital for 20 weeks and in isolation for 16 weeks. He had a number of setbacks and his fragile body began to shut down and once again, Fran and Jason, Michael’s dad were told he could die. Nobody had ever survived the illnesses he endured and in some instances the level of infection or virus was more than doctors had seen in a little boy his age. For eight weeks his mum and dad thought that they would lose their son forever but this strong and courageous little boy fought back and began to improve.

Oonagh would also take Michael’s brothers to see him in hospital and would stay with Michael so that Fran could have some time with her other children. Oonagh took the boys out separately and managed to organise a day at a Porsche garage for Daniel, Michael’s older brother. Daniel loves garages and his mum still speaks of the day fondly. “It was so special for him. It made the boys feel like there was still some good stuff in their lives and that they weren’t just being left on their own. I think they felt like Michael was getting all the love and support so these special outings lifted them and made them feel equally special, important and valuable.” remembers mum.

Rainbow Trust was with the family through their toughest time. When Michael was desperately ill, Bryan supported Fran emotionally. He listened compassionately and, “he supported what I was saying, agreed that it was horrendous and told me that what I felt was normal.”

Oonagh would ring “out of the blue” and offered Fran emotional support as well, “They seemed to be there from every angle; they supported me emotionally, they supported my children, they provided transport and respite care when it was needed. They did everything and whatever was needed.”

“Without Rainbow Trust, life would have been a completely different story in terms of coping, in terms of the trauma of what was happening. It was just Jason, Michael’s dad and myself doing every other night in the hospital and doing shifts all day and every day. I don’t think I would have coped on any sort of level if Rainbow Trust hadn’t come in and provided us with the respite. Their support was like light at the end of the tunnel. Michael was so well looked after by Rainbow Trust that we felt comfortable leaving him with both Oonagh and Bryan. They did over and above what they had promised, we were just clinging on giving lots of cuddles and half-heartedly playing as our minds were on what the consultant had told us and we were questioning what was going on. When Rainbow Trust came in, the focus was on Michael and that was lovely. I could see how much it benefitted him too. I wouldn’t have coped if they weren’t there to help.”

Michael is now three years old and is a picture of health, you’d never guess he was ever on the verge of losing his fight against cancer. For now, he has check-ups at the hospital and Fran has been able to share her experience of our support with other families going through similar treatment. “I told another family that Rainbow Trust is amazing, I gave examples of what they had done for us and explained that they do whatever is needed. I also told them that Oonagh had done something special with my older children so the whole family was supported. It’s invaluable and I would highly recommend Rainbow Trust.”

“I can’t convey how grateful I am to Rainbow Trust, but I am. It made a huge difference and the space allowed me to focus on the fact that Michael was going to get through this, even when the doctors said he wouldn’t. I could still walk away knowing that Michael was being looked after. I can’t say how grateful I am but I am.”

“When you have a terminally ill child, it’s the end of your world, you have nowhere to go and Rainbow Trust is like a knight in shining armour turning up. You don’t even know this kind of support is out there but when you find out they are there, it’s invaluable and brilliant,” says Michael’s mum.      

 

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Organization Information

Rainbow Trust Children's Charity

Location: Leatherhead, Surrey - United Kingdom
Website: http:/​/​www.rainbowtrust.org.uk
Project Leader:
Jenny-Anne Dexter
Leatherhead, Surrey United Kingdom
$39,705 raised of $40,000 goal
 
 
719 donations
$295 to go
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