Support Families Who Have a Terminally Ill Child

I always think it is good for our supporters to hear from Families that we support, so here are a few words from David Bara.

I’m a dad and my little girl Adi,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

As many of our supporters aren’t too sure what our Family Support workers actually do for the families we support, we asked one of our FSW’s to give a quick run down on a couple of her current cases.  

I thought I would give you a snapshot of the families I am supporting; it is very varied and will give you an insight in to what I do.

 George has had a brain tumour and I have been working with him since he was 3 months old. He has not finished his treatment and mum and dad are finding it difficult to cope with his rehabilitation as he doesn’t walk or talk.  Dad works full time and mum does a lot of the care herself.   George is now 3 years old  and the family have a one year old baby Fred, and it is difficult because the baby can do more than George can do and I have got involved in taking mum to an Early Years Centre and helping her get to know other families.  It is hard as mum is slightly agoraphobic, I‘m uncertain whether she was before George’s problems or this is something that has come on following George’s diagnosis.

 I take mum, George and Fred to the centre but I am gradually weaning myself away from mum to empower her to be more proactive with the other families as she is very nervous but I am still there on the outskirts though gradually backing away.  If it wasn’t for me she wouldn’t get on a bus and take George and Fred by herself.  So whilst mum and George integrate with the other families I get time to spend with Fred.

 George’s next scan at GOSH is due in March and unfortunately the type of brain tumour he had is likely to come back, so I will be supporting the family during this time.

 I phone mum and try to see the family at least once a week and support them at all their hospital appointments.

 I have another family you may be interested in, there’s mum, dad, brother Colin and Ann who has cancer of the eyes.  I have been working with them now for the past year.  Mum and dad don’t ask for much really, what they need and what works for them is I go in and support the family.  I leave my house very early in the morning (4.30 am) to get to the house at 6 am so mum and dad can take Ann to London for her treatment.  If dad can’t take the time off work, I would then drive her up to London, but on the whole I am mainly supporting Colin the healthy brother and as I walk in mum and dad have the car engine running and they are off.

 I then stay in the house and it enables mum and dad to go with Ann for her treatment and not have to worry, it also means Colin can stay in bed and bit longer.  I wake him up, get him washed and dressed and make him breakfast and take him to school.  Mum is really, really adamant that Colin’s education is not affected by Ann and her illness and nor is Colin as a person.  Colin is a very confident little boy and this is what works for this family. 

 I normally call mum after I have dropped Colin at school and leave a message to let her know everything is alright. 

 I find it so interesting that I have so many different families the only link between them all is they have a poorly child.

 So everybody deals with it differently so I bend and flex with them whatever way they want, which keeps me on my toes and is never boring.

 Then there’s Jenny, I may have told you about this family before.  She had a brain tumour then relapsed and had radiotherapy.   Mum is very concerned and upset as she is having lots of problems at school, she isn’t coping with the work and she should be in year one but has gone back down to reception class where her younger sister is and unfortunately she is still struggling with the work . 

 I was and checked with mum when her next scan was due as I fear maybe something was back, mum contacted the hospital and it appears that she may be struggling due to the radiotherapy she has had.  Radiotherapy whilst great at killing the cancer unfortunately also can affect other cells and being unable to cope with school work may be a result of that. 

 Mum is very concerned as she is having trouble dressing herself; she has to tell her when to drink and eat so there is something going on.    Dad has gone back to work but mum is finding it really hard, she said to me she felt like everybody had pulled out, which is what happens at the end of a treatment, except for Rainbow, and she is left to get on with it.

 For now we just hope that Jenny picks up.

A day in the life of Rainbow Trust’s Family Support Workers…

5am Ruth from our Kendal Team leaves home to collect mum and child to drive them to the Royal Victoria Infirmary in Newcastle for the child’s weekly chemotherapy treatment.  Mum doesn’t drive and without Ruth in her Rainbow Trust Kangoo it would mean an overnight stay in hospital following the nightmare of public transport.

7am Louise from our Southampton Team prepares to provide one-on-one support to siblings, who are coming to terms with the terminal illness of their brother, by taking them on a day trip, offering them vital time to talk to a trusted adult who understands some of what they are going through.  Louise has provided regular support to the family, since their son was diagnosed 18 months ago, and is a familiar face that the children look forward to seeing. 

9am Catherine from our County Durham Team supports a tearful mum as she buys her child’s first school uniform even though she does not know whether her child will live long enough to wear it.  The mum had been planning this shopping trip before her child became ill and thought that it would seem as though she had ‘given up’ on her child if she didn’t prepare for that all-important first day at school. Having the reassurance and support from Rainbow Trust helped her to understand that these feelings are ‘normal’ and that other families have faced the same dilemmas she has.

11am James from our Manchester Team accompanies a family to a consultation about the remaining options for the treatment of their child’s cancer.  Hospitals can be very frightening places and parents find that it helps to have their family support worker with them during appointments.  Not only because we have heard it before, but we are also able to understand the medical language and can spend valuable time after the appointment ensuring that the family are able to fully consider the options open to them.

1pm Clare from our Swindon Team provides emotional and practical support for a family at the funeral of their child.  As well as being with the family on the day of the funeral, Clare will remain in contact with the family offering on-going bereavement support for as long as the family need it.  This support can vary from family to family and may range from having a cup of tea with a mother who wants to remember the silly things that her child did and be able to laugh and cry at the same time with someone who knew her child, to individual work with brothers and sisters helping them put together a memory box to remember their brother or sister and the time that they spent together.

3pm Diane from our Surrey Team visits a sick child in Great Ormond Street Hospital, the child’s mum has to go home to her three other children, desperately trying to keep the family together through their ordeal.  Diane is a welcome face bringing valuable distraction for the child during their six weeks of unpleasant treatments.  Spending time with a child in hospital  gives mum a much needed break and time to focus on her other children as well as being a ‘new’ visitor for the sick child – someone who is there ‘just for fun!’

5pm Time for tea! Matthew from our Essex Team supervises tea with the siblings of a sick child, keeping them entertained whilst mum and dad spend precious time together with the sick child who is bed bound.  Sometimes it is the little practical tasks that make all the difference to a family coping with the unthinkable – someone to make the tea and clear up afterwards just gives families that vital breathing space.

7pm Caroline from our Surrey Team visits a new family to assess what support Rainbow Trust can offer them.  They have been referred by Great Ormond Street Hospital as their child has a very rare genetic condition that has been difficult to identify and treat.  Mum, a single parent, has had to give up work and with four other children is simply not coping.  Caroline will appoint a Family Support Worker to this family who will work with them – sick child, siblings and Mum – to enable them to deal better with their circumstances.

Nicole Aghar was just eight weeks old when her mum Lyndsey noticed her daughter’s eyelids flickering oddly.  Nicole was Lyndsey’s first child, and like any first time-mother, Lyndsey was worried she was being overly anxious.  

Not wanting to ignore her motherly instinct, she took Nicole to her local GP who referred Nicole immediately to the hospital on Christmas Eve 2007.  A month later, the family were given the devastating news that the flickering eyes Lyndsey had witnessed were the symptoms of a brain tumour.  There was more bad news.  The location of the visual palsy glioma tumour meant that it was too dangerous to operate on and that the tumour had destroyed Nicole’s sight.  Nicole was blind.  Doctors were unable to operate without causing further damage and prescribed 18 months of aggressive chemotherapy.

 Lyndsey was told about Rainbow Trust by a social worker when Nicole was first diagnosed at three months old.  Lyndsey was adamant that she didn’t need the help of outside services and refused the support of a Family Support Worker, worrying that it reflected badly on her capabilities as a mum. 

 The day after she was christened in February 2008, Nicole’s chemotherapy treatment began.  For Lyndsey, Nicole’s treatment and hospital stays proved an upsetting and lonely period.  Nicole’s father, Andrew, had used up annual leave for Nicole’s previous hospital appointments, scans and early treatment and was told he’d have to take unpaid leave for any further absences from work.  Unable to live without Andrew’s salary, Lyndsey spent weeks by Nicole’s bedside alone, staying overnight whenever her daughter needed to stay in and watching her hooked up to machines, giving her treatment and medication, blood and platelet transfusions that made her desperately ill.  Lyndsey found it difficult to keep five month old Nicole occupied, and her blindness meant that Nicole didn’t know when it was day or night and so proved a fitful sleeper.

Neither Lyndsey nor Andrew could drive, and so they were both reliant on their parents for transport to and from weekly hospital appointments.  Andrew would spend time with Lyndsey and Nicole on days off at weekends, but mostly Lyndsey was alone with Nicole.  Despite her painful chemotherapy treatments, which made her bones ache, Nicole was a happy child, always laughing and very responsive to her mum and close family.

When Nicole was 18 months old, the support of Rainbow Trust was again suggested to Lyndsey who realised how the charity could support her and Andrew and gratefully met with Family Support Worker Vicky from Rainbow’s County Durham based team. 

Looking back Lyndsey muses: “We’d have been lost without Vicky, I understand that now.  I was worried that people would think I didn’t care about my daughter if I let someone else sit with her in hospital, but I realise now that I needed support to continue to support my daughter.”

Vicky’s impact on the family was immeasurable.  Lyndsey no longer had to rely on her parents or in-laws to for transport to the hospital, and instead Vicky offered professional, reliable transport assistance in her special Rainbow car, and the chance to chat through Lyndsey’s worries during the journeys.  Lyndsey now had another daughter, Brooke, to look after, meaning that her time was split between her two children, one in hospital, one at home.  If Nicole had a long stay in hospital, Vicky would visit, allowing Lyndsey to go and eat in the hospital canteen, collect clothes or toiletries from home or see her baby daughter.  During chemotherapy treatment, when Nicole felt well enough, Vicky would take Nicole and younger sister Brooke out to the park or on day trips to the Farm or soft play centres.  Lyndsey soon began to rely on Lindsay’s weekly visits, and remembers:

“I now know I couldn’t have gone on coping with all the stress without Vicky’s help.  I think I would have broken down without Rainbow’s support.  I used to get really defensive about Nicole, not wanting anyone’s help other than my close family.  Nicole’s illness has been such a strain on all us.  It took me a while to trust Vicky but she has never let me down and is wonderful with Nicole and Brooke.  I really don’t know what I would have done without her help.”

Unfortunately for Nicole, her recovery has not been without setbacks.  She has relapsed twice since the initial diagnosis and has endured two more courses of chemotherapy before her current course.  Complications have arisen due to the length and strength of the chemotherapy treatments and Lyndsey and Andrew have been warned that Nicole’s bone marrow is weak and tiring and her hearing has been affected.  Nicole is now on a different course of treatment for a year which she has so far had far less side affects from.

At her last scan, witnessing a shrunken tumour, Nicole’s doctor told Lyndsey that “We are winning, it’s just going to take a matter of time” which has left Lyndsey and Andrew feeling a lot more positive about Nicole’s future.  Nicole starts school in September, and Lyndsey is looking forward to enjoying Nicole making friends and reaching further milestones.  With Vicky’s help she can remain strong for her family and fight for Nicole’s good health.

“People always ask me, how do you do it, how do you cope with everything that has happened with Nicole.  I tell them, the day it breaks Nicole, is the day it’ll break me.  She is such a happy joyous child, how can I give up when she has so much to live for?  Rainbow’s support means I can cope as best as I possibly can for my family and for Nicole.”

Thank You to all our supporters, without your donations we wouldn’t be able to help families like Nicole’s.

Shona White was six and a half when she was diagnosed with a tumour at the base of the brain.  Family Support Worker Val has provided berevement support to parents Stephanie and Simon and older sister Iona since Shona's death.

"When Shona was ill, we had support from so many services, we knew so many people - doctors, nurses, community nurses, therapists to name but a few.  We got to know them all really well through the years that Shona was ill.  Understandably, when she died they had to move on and treat other patients, but it felt as though not only had we lost Shona, we'd also lost these people who had become such a big part of our lives."

"As Val had been our Family Support Worker since June 2007, she knew Shona; she knew her character, her sense of humour and what she liked doing.  Even now she will point out something that she thinks Shona would have liked.  We don't have to explain anything about Shona to Val because they knew each other.  We don't really feel the need to go to another bereavement service.  We'd have to go through Shona's whole story with someone who didn't know her.  The continuity of service which Rainbow Trust has provided is what we have appreciated the most and it's so important to us that Val knew the real Shona, not just her story.

"We had the first anniversary of Shona's death in June this year.  It was difficult, and will continue to be for many years to come, but it is reassuring to know that Rainbow Trust is still here for and with us."

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