Support Families Who Have a Terminally Ill Child

by Rainbow Trust Children's Charity
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Support Families Who Have a Terminally Ill Child
Support Families Who Have a Terminally Ill Child
Support Families Who Have a Terminally Ill Child

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.

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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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This year Rainbow Trust celebrates its 25th anniversary.  Founded in 1986, we have now supported thousands of families who have a child with a life threatening or terminal illness.  With the help of the families who share their inspirational stories about the difference Rainbow has made to their lives, we have been able to raise our profile and tell more people about the valuable work that we do. 

From the humble beginnings of two staff and a kitchen table to work from, Rainbow is now a national charity and supports over 1,000 families across England.  Thanks to the dedication and hard-work of staff and volunteers, Rainbow continues to grow year on year and makes progress towards achieving its vision that one day all terminally ill children and their families will have access to a Rainbow Trust Family Support Worker.

To mark this anniversary, Rainbow will be holding special profile raising fundraising activities to make this year our most successful yet.   

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Tyler Family
Tyler Family

Two year old Malachi Tyler was diagnosed at birth with Neurofibromatosis, a genetic condition which varies from one person to another even in the same family. Some people will be mildly affected with very few health problems while others will have some serious health problems making their daily life difficult.

When Malachi was just one, his parents first noticed that he was walking around furniture and he was diagnosed with muscle hypertonia and a MRI Scan was arranged at St Thomas Hospital in London.

Four out of six of Malachi’s siblings have NF of varying degrees so mum Emma wasn’t unduly worried when they were told that he had the same genetic condition. About two weeks after the scan, Emma received a call from the hospital to say that they would like to see them the following day. “I was very scared when doctor wanted us to go the following day. It was too much for me to bear and I wanted to know more there and then; there was no way that I could wait until the following day.” The doctor said that scan results showed Malachi had an optic glioma; a tumour that grows in various parts of the brain. The family went to the hospital the next morning and were told that their son had no sight in his left eye and limited sight in his right and that further deterioration should be expected. Malachi was immediately referred to the Royal Marsden Hospital in South West London to receive his chemotherapy and that’s where the family first heard about Rainbow Trust. Tori, one of the Surrey care team workers was assigned to the family and since that time, the family has never looked back.

At the end of last year, the worst happened. Emma noticed that Malachi was now walking into furniture and called the hospital for an urgent appointment. They confirmed what Emma knew, Malachi had gone completely blind, “Even though I knew that Malachi had lost his sight, it was a sad day when we got it confirmed by the doctors.”

“Over the last year, we’ve had some pretty dark days and we were all thankful that Tori was there to share them with us. When Tori visits, she will spend time with Malachi’s other siblings and has built up such a good rapport them all. Also Graham and I are grateful for her for the support she gives to us. She will pick up and take the children to school and has taken Malachi to hospital when we’ve not had access to a car.  I know that I can call Tori whenever I need her if I need someone to talk too. We really appreciate the care and support Rainbow Trust has given us, in fact, I don’t know how we would have survived without it!”

Tori said: I enjoy working with the Tyler family because they really do utilise me and I believe that I’m making a real difference to the family and that’s what it’s all about.”     

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Organization Information

Rainbow Trust Children's Charity

Location: Leatherhead, Surrey - United Kingdom
Website:
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Twitter: @RainbowTrustCC
Project Leader:
Hanne Widmer
Leatherhead, Surrey United Kingdom
$28,972 raised of $40,000 goal
 
586 donations
$11,028 to go
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