Rainbow Trust Children's Charity

Rainbow Trust Family Support Workers provide emotional and practical support to families that have a child suffering from a life threatening or terminal illness. They provide access to healthcare, education, therapy, welfare support and benefits for these families at the most traumatic time of their lives together with emotional support for the whole family.
Apr 17, 2015

How Rainbow Trust Supported Us

Karen: “Without Rainbow Trust this family would have fallen apart.”

Jonathan Allen, 16, Karen, Pippa, 18, Holly, 14, Marcus, 11

When 16 year old Jonathan noticed pains down his left side, he thought they were muscular but when they got worse, his mum took him to the doctor. Sadly, keen karate fan Jonathan, was diagnosed with bone cancer.

He started chemotherapy on 10 March 2013.

Jonathan

“It was only a week before I was diagnosed but every time I stretched I was in pain. I mentioned it to my mum and took some painkillers but when it didn’t improve we went to the doctors and I was referred for an emergency MRI. I had to have an operation to remove the tumour, which was tricky as it was behind my ribs, but they managed to remove the tumour and I started chemo straight away.”

Jonathan, who is studying xxx at college, managed to keep up with his studies throughout his treatment aside from a couple of days off when he was at his worst. He’s continuing his course and hopes to be a veterinary nurse or lead talks about the animals that he deals with.

“The doctors told me to take it easy after my treatment and I have been, to an extent, but I don’t want to miss out on what my friends are doing. I’m hoping to get back to some karate training soon too.”

Karen, Mum

“Initially I just gave Jonathan some painkillers and thought nothing of it but it became clear there was something else going on so we took him to the doctors and were referred for an MRI scan. It was a bolt out of the blue when he found out he had cancer and I wasn’t sure how I would cope as a single mum. I’ve got Jonathan’s older sister, Pippa, 18, who is a massive help but has her own life as well as the two younger ones, Holly, 14 and Marcus, 11. Initially when I said I would struggle I was told that Pippa would have to leave college and become a ‘second mum’ to the kids, which I was not happy about. I was also told that another option was to put the younger kids into foster care, which I was determined would not happen.”

“Rainbow Trust and our Family Support Workers Pete and Jade, saved us when we heard about them in September 2013. Without them, Jonathan would have lost his college place, Pippa might have had to leave college and we would have been struggling with the three hour round trip to Addenbrookes while looking after the younger kids. I can’t explain the difference that Rainbow Trust has made to us.”

“It’s little things. Like last week Jade took Pippa and Holly to Lakeside and they all went shopping. It meant that they had a day which was just about them, which is so important when we have all had to focus on Jonathan. Jade also has an amazing relationship with Jonathan and we all trust her. He’s happy in her company, as am I and the other kids, and her support has allowed us to get on with our lives throughout Jonathan’s diagnosis and treatment. I’ve told lots of people about the amazing work Rainbow Trust does. Without them this family would have fallen apart.”

Pippa, Sister

“Having Jade has really helped eased the tension between me and mum, she’s been a lifesaver. We’re both very strong willed and it’s been a hard time but Jade makes sure that we both have someone to talk to. Going to Lakeside was brilliant and something we wouldn’t have had time to do without Jade. Without Rainbow Trust, mum and I would have been at each other’s throats but Jade has helped us work through difficulties and have time to ourselves.”

Apr 17, 2015

Providing Transport

We first heard about Rainbow Trust through our community nursing team at our local hospital. Cleo was just three months old and we were preparing for her second open heart surgery when we were introduced to Nicki Phelan, our Family Support Worker. She started visiting us just before Cleo’s second operation so Nicki spent time getting to know Cleo. 

Nicki spent time with us, helping me out at home and getting to know all the family. She’s never looked after Cleo while I’ve slept or anything, we’ve always enjoyed activities together. She and Bo get on really well, Bo really likes her. It’s good that Nicki can spend that time with her. She sometimes collects Bo from school as well if Cleo is having a bad day. 

Nicki helps us with hospital visits. The stress of going to those meetings, knowing what your child will be put through and how stressed she will be is so difficult. The journey to the hospital is always so worrying - it’s great to be able to share that with someone. Rupert is self-employed so any time he takes off work means lost income for us. And, someone needs to be at home for Bo. Having Nicki support us means that he can continue working, and I don’t have to go to appointments by myself, and Bo is still looked after.

 I don’t think people understand the logistical problems of taking a child to a hospital appointment. You’re thinking about routes and traffic jams and parking tickets and at the same time, you’re thinking of what you’re going to ask the doctor when you’re there and how you’re going to get your toddler to sit still during an assessment or treatment. Nicki comes to all appointments with me. She’s there when Cleo needs blood taking, she sits with her and calms her down and also listens when doctors are talking about Cleo’s condition. Because I’m so close to it, it’s good to have a third party there, you can perhaps be a little more objective when she’s listening. 

I was made redundant when I was on maternity leave so finance is a major issue for us. I can’t really go back to work when I’ve got a child with complex health needs in the same way I worked before. The reality is you do need more money when your child is sick. For example our heating bills are massive because we’ve got to make sure Cleo is warm enough. She has bad circulation so we don’t want her using energy and losing weight trying to keep warm. 

Besides practical support at appointments and with Bo, Nicki’s also there with me when things just get on top of me. She’ll sit with me and just be there when I’m crying. She’s there to just give me a hug when I need one. The weeks before Cleo’s last operation were really tough – Nicki and I would just sit in the kitchen together and talk things through. As much as she could, she emotionally prepared me for whatever might happen. Each time your child has an operation you worry that she might die. You need someone to talk to, who knows that, so you don’t need to keep saying it.

Before each operation, it’s harder. Now that she’s older and has such a great personality, the thought of losing her is so much harder. This little person who brightens my day, I love her company – we are so inextricably intertwined. I am her protector and her crutch and I love her to bits. 

Rainbow Trust makes life easier by us knowing that there’s someone there who can help you practically and emotionally when times get tough. Knowing that someone else is there who you can turn to. 

Nicki and I get on so well, we’ve really clicked. We’ve known Nicki three years now, and the whole family love her. It’s good for me to know when Nicki picks Bo up from school, that Bo is looking forward to seeing her and doesn’t feel like she’s being left with someone she doesn’t like. She’s been a constant during most of Cleo’s life. We’ve built a really good relationship with her. Few people have been there with us every step of the way but Nicki has seen that 360 degree view of our life and she understands and I know that our conversations are confidential and that means so much to me. 

Before Cleo’s third operation, we thought we were going to lose her so I wanted her christened and since then I have been attending church. I have found comfort and support in the community. It’s given me some peace and fulfilled a spiritual need within me. 

Nicki makes me laugh when I need to and supports me when I need to cry. When you’re living with a very sick child you need someone like that in your life. 

For Jo, accepting her lot in life is her way of coping. She knows that none of us have any control over our lives. When asked what she missed, she said, “There’s nothing I miss, I’d rather have Rex [her still born child] back for one day. Focusing on Cleo and making sure she has the best possible life is a massive job in itself. It’s changed me, it’s focusing on a simple life and what that means to us.” 

You’ve got to have hope. I am continually hoping that things are positive for Cleo.

Apr 16, 2015

A Family Story

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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