Supporting Terminally Ill Children

by Rainbow Trust Children's Charity
Vetted

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.      

 

Hi, my name is Ben

Hi, my name is Ben, I am 13 and have Spinal Muscular Atrophy which is a rare neuromuscular disability. This means that the signals from my brain don’t get to the muscles in my arms and legs properly. Consequently I cannot walk and need twenty –four hour support for all of my personal care. I have an electric wheelchair which has a controller that can connect to a computer using Bluetooth, so I can activate and use the cursor on a computer screen with my wheelchair joystick because I can’t use a regular mouse. It also means I can use a PS3 using a special connection, something I couldn’t do otherwise. My wheelchair is my lifeline and I couldn’t do without it.

My family and I have fantastic support from Rainbow Trust and our family support worker called Jayne. She comes around and gives my parents a break by bringing different messy activities for my sister and I to do and enjoy for an hour or two including baking cupcakes and arts and crafts.

Rainbow Trust points us to different charities and activities that they think may be able to help us. This is important because Mum and Dad don’t always have time to look or have the chance to think about them. As well as all of that Rainbow Trust give me and my family some great opportunities. For example, in 2012 I got the pleasure of being asked to race on the Olympic track in a test event in London. We also went to a charity event which was full of celebrities including world boxing star and Rainbow Trust supporter Frank Bruno. My sister and I were asked to give a speech at number 10 Downing Street about our experience of Rainbow Trust which was hosted by Samantha Cameron and it was a proud moment for Mum and Dad. Jayne often helps and supports us when I’m in hospital or ill; this can be a particularly tiring time so having Jayne around is fantastic.

Having Jayne and Rainbow Trust to help is very important because they are brilliant and understand the support and help we need. Thank you all for everything you have done for us!

If I could offer one word that sums up Rainbow Trust it is…. Inspirational.

Having a physical disability can feel very annoying at times because I can’t do what other people can do like football, riding a bike and walking however I don’t let it get in my way, I say it’s annoying because I have grown up with it but it’s an all-round pain in the bottom. I wouldn’t say it makes me feel upset; however it’s incredibly exasperating when we go out on a trip because we have to find out whether it’s accessible and has stuff like toilet facilities. The beach makes me feel particularly frustrated because while my sister goes off and has fun I have nothing to do. Another thing that I get frustrated about is having adults around when I don’t need them, this makes me feel restricted because I can’t mess around with my friends. During the week I have physiotherapy which can get extremely boring and painful, I know I need it though because otherwise I get very stiff.

 

The support Rainbow Trust gives my family is brilliant because they understand how to help me in a practical way, physically and emotionally. The way Rainbow Trust help my family is super. They chat to my parents about anything that is concerning them. My sister has great fun with Jayne and always looks forward to her coming. When I go into hospital I can feel extremely bored then Jayne comes and cheers me up a bit which makes me very happy. If we didn’t have Rainbow Trust I think life would be very different and not in a good way!

Supporting Families
Supporting Families

Sophie was 14 when her brother, Andrew was diagnosed with a rare and inoperable cancer.“It was weird as I didn’t expect anything like that to happen. It was upsetting, but we mainly laughed about it. That may sound weird. They say if you don’t laugh you cry. We normally made jokes to get through it.” have supported one another throughout the journey, “We’re very close. I would always talk to him if he was sad or anything. He would come to me when he was sad.” Their approach reflects the whole family’s attitude to life; living for the moment, remembering to laugh, and carrying on.

 Her brother’s illness naturally had an impact on Sophie and has subsequently inspired her to want to become an oncology nurse. When most of the attention was on her brother, Sophie joked that her brother was an attention-seeker, but said, “He should have been getting all the attention. With him he would always give me stuff, with most of his things he got. He gave me his Brave Heart Award, to make me feel like I wasn’t left out. But no, if he got loads of attention then I know the reason why he did, so that’s good.”

  Through the difficult times, Rainbow Trust Family Support Worker, Sabrina helped Sophie by giving her some much needed respite with days out of the house alone or with her brother and away from hospitals with someone outside of the family to talk to. “It was nice just to get out of the house and it wasn’t very strict. She would let you go home when you wanted and if you got tired or anything like that.

 We would have been able to [go out without Sabrina], but it’s different when you are with Sabrina, just because she is really, really nice.”

 “It’s just nice to see a friendly face. I would talk to my friends about it but if I needed to talk about something else I would talk to Sabrina.”

 By giving siblings the opportunity to relax and talk about the aspects of life that they are not coping with or do not understand can help to rebuild their confidence and reassure them that it is alright to have fun again.

 Sabrina introduced Sophie and her brother to one of Rainbow Trust’s drop in groups where they met other people in similar situations. This helped them both cope better with Andrew’s illness because they saw how others managed. They also helped and reassured others, particularly younger patients who might be scared about pending treatment and want to talk about it.

 Sophie said, “It’s just a great experience to meet up with them. With Sabrina you can go on trips out where you can meet loads of different people that are in the same situation.”

 Sophie’s family have welcomed all that Rainbow Trust offers, “It means a lot to us, but it also means a lot to our family. We really do appreciate it, so thank you.”                

Thanks to your generosity, Rainbow Trust Children's Charity were able to provide the following in 2013.

Family Support

1,368 Families supported around the Country.

Transport Support

882,000 miles driven by our Family Support Workers to homes, hospitals and schools - almost the equivalent to driving to the moon and back TWICE !

Sibling Support

3,273 hours of Sibling Support, mainaining school attendance, arts & crafts, cinema trips, days out at the zoo, fun and laughter.

Home Support

10,749 hours of home support, including emotional support, respite, countless meals cooked, baths run and story books read.

Hospital Support

6,804 hours of helping to organise appointments, explaining illnesses and treatment, looking after siblings and staying with sick children.

Bereavement Support

851 hours of bereavement support for the entire family, face to face and over the phone, at any time of the day or night.

Please help Rainbow Trust to support even more families who have a child with a life threatening illness in 2014.

 

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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
$43,838 raised of $80,000 goal
 
764 donations
$36,162 to go
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