Supporting Terminally Ill Children

by Rainbow Trust Children's Charity
Vetted

 

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.

The following case study shows the ways that support is given, how the type of support can change depending on the situation and how the relationship between a family and their Family Support Worker can develop, sometimes in a short space of time.   

 

A TIME LINE OF FAMILY SUPPORT WORK

 

I first met Sophie’s family in hospital where she was receiving chemotherapy and within two months of her diagnosis of osteosarcoma (a rare type of bone cancer).

 

I listened as the parents safely and honestly expressed their mixed emotions of anger and frustration, together with their concerns (particularly as they considered there had been a delay in obtaining a diagnosis).  Being able to voice these feeling/thoughts helped them to process and start to come to terms with the turmoil in their lives and it was humbling to realise they had been able to do this within the first hour of my introduction.

 

It soon became clear about the additional difficulties they were experiencing - both non drivers,  managing two other children (one school age, one preschool age),  main  treatment being at a hospital some miles from home, serious financial restraints -  all this together with the understandable disbelief of the situation they and their previously very healthy daughter were now in.

 

 Initially, my support was to co-ordinate my visits between hospital and their home. Sophie’s dad was resident at hospital with Sophie for many weeks but it was important for the family to have opportunities to be together as much as possible and also for the parents to have ‘time out’ together.  During this period I spent time getting to know Sophie and her siblings - giving them individual attention with games, crafts and activities or just watching DVDs together.

 

It was then planned for Sophie to have major surgery to remove part of her hip and thigh bone, at another hospital even further away,  so I  remained with  Sophie at hospital on the day her parents travelled to London for an in depth pre-surgery consultation, maintaining telephone support with the parents throughout the day.

 

Since Sophie’s diagnosis it became clear that the family’s accommodation was totally unsuitable for her needs, her father had to carry her up a flight of stairs to their council flat and once inside, space was limited and would not be suitable for wheelchair access.  This situation became more urgent once the date of surgery was known and my support was given by liaising with the Occupational Therapist to encourage to ‘keep things moving’.

 

During the time that Sophie was in London for her surgery the family were allocated suitable accommodation, Dad returned home and it was my privilege to take him to the new

address to start preparations for the relocation.

 

By this stage I had been supporting the family for two months.

 

Sophie’s intensive treatment was continuous between her local hospital and the specialist oncology ward for the next four months and the strain of the family being split (mum remained resident in hospital with Sophie) was taking its toll on them all. 

 

My support during this period was varied, depending on the priority needs of family members at any one time, for example:

 

  • Sophie  - for company, chats and activities;
  • siblings - visits to Sophie, voicing concerns/anxieties and fun outings;
  • parents -  respite, both  individually and as a couple, emotional support, transport, shopping, advocacy support at meetings with consultant;
  • grandparents –  emotional support;
  • medical and ancillary staff – liaison on behalf of family.

 

About two months later, Sophie’s parents were given the devastating news that her cancer was spreading in spite of the chemotherapy treatment and there may be the possibility of more surgery.  Extra emotional support was necessary at this stage and it later followed that I upheld the parents’ wishes for Sophie to continue as normal life for a child of her age as possible; so in the following months I spent quality time with Sophie and her siblings on outings, art and games activities including taking family on a couple of trips to animal shelters as they had promised Sophie a dog on completion of her chemotherapy!

 

As Sophie was attending school part time and her brother was also a pupil at the same school, support to the staff was given by close liaison and joint meetings (including parents and multi disciplinary staff) to ensure maintaining a consistent way of handling the situation and avoiding inappropriate information being shared with the close local community.

 

After about three months of keeping life as normal as possible the parents were then informed that there were no other treatment options and that there was only a short prognosis of time. Again emotional support was increased particularly at this time as the parents experienced mixed feelings of shock, disbelief, anger, failure, fear and hopelessness and were in need of much reassurance and encouragement.

 

I worked alongside the family, helping - by listening to their thoughts/feelings, acknowledging their fluctuating emotions and in particular one poignant shopping trip was with Sophie’s parents and grandmother when we were looking for Christmas decorations, the parents having realised this would be Sophie’s last Christmas and they naturally wanted to make it extra special not only for Sophie but for their memories too.

 

L-R:  Siblings Ben, Emily with Sophie taken a month before she died

 

It was three weeks after Christmas that one morning I received a phone call from the school (the result of close liaison) advising me that the family wanted my help as Sophie had been admitted as an emergency to hospital after collapsing at school just an hour earlier.  I was able to initially speak to Sophie’s siblings in that phone call to give them reassurance and tell them I would see them later in the day.

 

I then made contact with the family and confirmed care provision for the siblings and arranged to meet Sophie’s parents at the hospital.

 

Due to Sophie’s sudden deterioration my support changed to ‘end of life care’ and arrangements were hastily made with the hospital at the parents request to return Sophie home where she could remain with her family.

 

Sophie’s father and I went on ahead to prepare and bring Sophie’s bed down to the living room and collect the siblings from a relative.  This was all completed in time for Sophie’s return by ambulance.  As she was on high medication and very very sleepy I prepared the siblings on how she would be and encouraged them to still speak to her as they would normally – Sophie’s parents also appreciated knowing this as they were afraid, shocked and unaware of what to expect.

 

I remained with the family until late and offering to support them overnight but as they became more in control of the situation I left arranging to contact them in the morning. 

This contact came much sooner however and was made by Sophie’s father through Rainbow Trust’s 24-hour telephone service to inform me that Sophie had passed away.  When I returned the call he was naturally very upset and shocked and told me that Sophie had died about an hour previously and he did not know what to do or what to tell the children, I responded by encouraging him to ensure the family have this precious time with Sophie, no need to rush anything and I would visit straight away to help them.

 

That day I remained with the family all day and the support given covered a full range of emotional and practical issues:

 

  • preparation and explanations to the siblings at each stage throughout the day;
  • emotional support for parents and grandparents;
  • information and guidance on procedures;
  • phone calls on behalf of family;
  • liaison and arrangements with funeral director;
  • liaison and guidance – at their request – with the school, with suggestions on how to inform the pupils;
  • shopping for basics;
  • booking appointment to register the death.

 

At the family’s request and based on their needs my support over the following ten days involved daily visits and included helping with registering the death and close liaison with the funeral director on behalf of the family.  I also accompanied the family during a visit to see Sophie in the Chapel of Rest and prepared the siblings about what to expect at the funeral and attend the funeral. 

 

Support then continued as bereavement support, beginning with regular weekly visits encouraging the parents to:

 

  • to reflect and share memories of Sophie;
  • to acknowledge the effect of the pressure/stresses of the past 18months;
  • to give reassurance of ‘normality’ of their various behaviours/feelings;
  • to give time to the siblings and check on any underlying worries/questions and give them the opportunity to talk about Sophie;
  • to consider memory box items and keepsakes for each member of the family.

 

Visits were then given fortnightly and practical issues were addressed, in particular the financial difficulties then being faced due to a large reduction in benefits and debts from the extra expenditure incurred giving Sophie a good Christmas.  With the parent’s permission I liaised with a Community CAB worker who then frequently visited the family and negotiated on their behalf which has led to some feeling of stability for the parents.

 

Support has continued with intermittent visits and phone calls especially when Sophie’s birthday anniversary approached some three months after her death and arrangements were made then to mark the occasion.

 

Bereavement support will continue with visits as necessary, both for the parents and the siblings, together with telephone calls and in particular support will especially be given at Christmas and the anniversary of Sophie’s death

I always think it is good when our supporters can hear from families that we support, so here are a few words from David Bara.

I’m a dad and my little girl Adi, pictured above, has cancer. Sharing my story with you today is my way of publicly thanking Rainbow Trust for all their support and to show how vital your donations are in helping dads like me cope.

Adi is only two years old but is very aware that something strange is happening to her body. Her brain tumour was aggressive and, even though all but a tiny piece had been removed, they could still only give her a 35-50 percent chance of surviving the next five years.

The nights apart are horrendous
My wife spent every night with Adi whilst she was in hospital and I was at home trying to keep a sense of normality for our son Asher. Searching to find soothing answers to his questions about where his mummy and sister had gone.

Struggling to cope with Adi’s cancer
The hospital appointments, operations, tests and waiting become your reality, your every day life. It is exhausting but I must make Adi as happy as possible so she is in the best psychological state to fight the cancer. Sometimes I am so tired it is a strain to keep smiling. Alison, our Family Support Worker helps with this a lot. She spends fun hours with Adi; they paint, read stories together and laugh a lot. She is there when we need her.

How you can make a difference
In all honesty, I have no idea what the year ahead will bring. It will be challenging, tiring and so much more. Thanks to Rainbow Trust we have a great team behind us no matter what. Rainbow Trust relies almost entirely on the generosity of voluntary donations from individuals like you to make sure that the service families like mine receive is available 24-hours a day, 365 days a year. I am overwhelmed by the professional care we have received. Rainbow Trust need to raise £10,000 to provide 500 hours of support for families at the hospital, at home and to worried siblings. Please help my family to say thank you and support other families in need.

David Bara

 

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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
$39,715 raised of $40,000 goal
 
 
720 donations
$285 to go
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