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.
Oct 15, 2014

In the Right Place.

Rainbow Transport ?
Rainbow Transport ?

Not long ago Rainbow Trust’s Family Support Worker, Val, had to reschedule appointments due to changes in several family circumstances.  Instead of visiting two families in their homes as was originally planned, she rearranged to provide support in the hospitals where the children were receiving treatment.  All was going well, in fact too well as both children had finished their treatment by lunchtime and were on their way home, leaving Val with the rather appealing option of going home a little earlier than usual.

 

Being Val though, she decided to pop in and say hello to Danny who was an inpatient in the hospital. Danny’s immune system was so low that he had spent the last year in hospital due to his susceptibility to pick up infections and viruses which were potentially life threatening. (His body had no natural way of fighting off the infections).

 For Danny it was frustrating because as soon as he was feeling better, his hopes of being discharged would be short lived as, within days, he was being readmitted with another infection, with the prospect of another six weeks in the same bed, in the same ward, feeling the same as countless times before.  Equally if not more so frustrating was the fact that he and the family were continually being told that despite all the tests in the world, no-one could actually diagnose what it was that was stopping his body from building an immune system.  So for Danny it meant that the same pattern was likely to continue for as along as ‘don’t know’ was the answer to his questions.

 To cut a long story short, Danny underwent a Bone Marrow Transplant, and six weeks on, his body seemed to be starting to build an immune system.  Every time his immune level went up by even 0.1, for Danny it was a step in the right direction - it was getting closer to the 5.0 he needed to be safe enough to leave for home. 

 Just at the very moment Val popped in to say an impromptu hello, the consultant also walked in to the ward and said that provided Danny had a safe way of travelling home [the family don’t have a car and would have had to use public transport which was not deemed safe for him] he could pack his bags.

 Danny jumped up, pointed at Val, and shouted ‘Val is my transport!’

 Within minutes Danny was pulling off monitor leads, packing his bags and telling nurses to hurry up with the medicines he needed to take home with him, whilst his mother was so thankful to Val for deciding to say hello instead of going home early.  Mother and son were driven home by Val; they knocked on the front door of their home which was opened by an unsuspecting father and sister, followed by a moment’s disbelief, then absolute delight and hugs all round because their son was, at last, home.

 Sometimes, not always, but sometimes a Family Support Worker is in just the right place, just at the right time!

Oct 15, 2014

Sophie and Andrew's Family

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.”                

Oct 15, 2014

Beth's Story

Sibling Support
Sibling Support

Beth is 7 years old, and lives with her mum and her little brother, who has very complex care needs and whilst Beth loves John dearly, she also has times when she really wishes she did not have a brother, any brother but especially a poorly brother.

 Beth’s family was introduced to Rainbow Trust by John’s community nurses, who recognised that Beth’s mum was clearly finding it hard to balance her time between Beth and her very ill son.

Beth’s mum was very open with the Rainbow manager and said she was at a loss at how to cope with a very sick child who needed her constant attention and all the visitors who came to see him, and to find time to be with Beth.

 Mum gave examples of Beth coming home from school, bursting to tell her about her day at school only to find herself saying I am busy with your brother, but once I have fed him we will talk about it, only to find as soon as she sat down with her daughter the doorbell would go and it would be the occupational therapist calling to discuss the new hoist; then the visual impairment worker; then her son would have a large epileptic seizure, and Beth would go to bed not having been able to share her special news from school.

 Mum had noticed that Beth was slowly changing into a sullen and withdrawn little girl.  

 Various possible options of support were discussed with mum, whether our worker would support the brother, so mum could spend more time with Beth or whether the worker would become Beth’s special person and spend time with her. As well as being there for mum.   Mum decided that a special person just for Beth was the answer. How right she was.

 Our support worker was introduced to the family and was in the family home when Beth came home from school. She had arrived earlier to get to know mum and her son, and had in fact read to the sick boy, so mum could prepare his feeds and also have a soak in the bath – a very rare treat.   So when Beth came in mum did have time to listen to what had happened at school, and then introduced the worker to Beth, Beth was delighted to hear that someone had come into the family home for her not her brother!

 Our worker has become a life line for the family, she regularly collects Beth from school and they have “adventures” together visiting local libraries, something Beth pointed out she could not do with her brother, as he makes too much noise! So her homework is now always handed in on time, trips to the pet corner at the local garden centre, again something Beth cannot do with her brother, as he is highly allergic to pet hairs!  

 When her brother had to go into hospital for planned surgery, our worker, with mum’s full permission, was able to explain what was going to happen. Beth took this in her stride, and decided having to stay with her grumpy Aunt would be alright for the three days as our worker would take her to and from school each day and to visit mum and brother in the hospital.

 Beth has become a much happier little girl. Mum is more relaxed knowing her daughter has an outlet for her energy and worries she did not have before, and that she has a “professional friend” there for her as well, just don’t tell Beth though!  

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