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.
Aug 20, 2015

Support for Grand Parents

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

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.

 
   

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