Supporting Terminally Ill Children

 
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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 concerned 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.

The Tasgals

Miriam and Jeremy Tasgal from Barnet have two children, eight year old Michael and six month old Yehoshua.  Yehoshua was born with severe hypoxia which resulted in brain damage.  Yehoshua now has severe learning difficulties and possible blindness.  Due to his inability to suck and swallow, Yehoshua is fed by a gastronomy tube through his stomach.

Rainbow Trust Family Support Worker Eva has been supporting the Tasgal family for six months, helping with transport to appointments at London’s Royal National Throat, Nose and Ear and Barnet hospitals, and offering emotional support to mother Miriam during home visits.  Eva also spends time with brother Michael, playing and doing arts and crafts.

Talking about the support Rainbow Trust has offered, Miriam says:  “When you have a sick child suddenly everyone has ideas about things you can do that might help.  Everyone has an opinion.  Everyone is an expert.  And sometimes you don’t want people to talk at you, you want people to listen.  Eva is really good at that.  It’s been wonderful to meet someone who is allowing us to go on this journey, wherever it ends, and giving us the support we need to get through it.  Going through what we’ve been through, you quickly learn to really appreciate people like that in your life; they are few and far between.

“We live in a very close-knit Jewish community, which sometimes can be wary of accepting outside help and look to wider friends and family for support.  We’re relatively new to this community and we haven’t got family near by.  Eva is very sensitive to our beliefs, and we’re very comfortable around each other now.  On her first appointment with us she offered to sit with Yehoshua during a hospital visit so we could return home to observe Sabbath.  Eva understands that our faith is incredibly important to us and a great support at times like this.”

Rainbow Trust supports families like the Khans.  Daughter Anisah was diagnosed with bone cancer when she was nine years old.  Rainbow Trust Family Support Worker Linda has supported Anisah's brother Ismael and four sisters Sameena, Maryam, Humayra and Zahra through Anisah's chemotherapy treatment and life changing operation to remove the tumour from her leg.

Her parents Zafar and Sarfraz explain the difference Rainbow Trust makes to their large family.

"The cancer wasn't just Anisah's illness, it affected the whole family.  Every one of us has changed as a result of the experience.  Rainbow helped us go through this ordeal as a family, together and stay as strong as possible.

"All of Anisah's siblings help with her care.  They go to hospital appointments with her and help support her around the house.  Her older sisters have been especially busy with her care over the holidays, putting her to bed during the day if she feels tired and making sure she is never alone in case she faints or falls.  We know it impacts on their social lives but we need their help to look after Anisah.

"Anisah's sister Maryam has just finished her A-levels, but she hasn't done as well as we thought she would.  Maryam used to love college and she was predicted really high results and wanted to be a pharmacist.  The stress and emotion of Anisah's illness meant that she didn't want to go to classes and struggled to concentrate on college work.  She's so close to Anisah, and struggled to deal with what was happening to her and what could happen in the future.  She'd sit in the library day after day, not knowing what to do.  She needed our help and support and because we were away at the hospital with Anisah, we just weren't there for her.

"Linda provides the best kind of support for Maryam and Anisah's brother and sisters, she laughs with them and takes their minds off what is going on for a couple of hours.  She listens to any concerns they have.  Linda is just trustworthy.  We're always wary of talking to outsiders about Anisah and what we're going through but both of us and the children feel very comfortable talking to Linda."

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Dave Pearson

Leatherhead, Surrey United Kingdom

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