Supporting Siblings of Terminally Ill Children

by Rainbow Trust Children's Charity
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Supporting Siblings of Terminally Ill Children
Supporting Siblings of Terminally Ill Children
Supporting Siblings of Terminally Ill Children
Belle very ill in hospital
Belle very ill in hospital

“Belle was our rainbow baby. She is our only girl and the youngest of five children. At the age of seven months Belle became incredibly irritable. She begun to regress in her development and was continuously in and out of the doctors and hospital,” said Belle’s mum Jemma.

At around 10 months old Belle began vomiting randomly and sleeping more. This continued over the next few months, gradually getting worse. By 14 months Belle slept for 23 hours a day, only waking for pain relief and a bottle. Her development had ceased and her head tilted and drooped.

Jemma and her husband, Lee, took Belle to their local hospital many times but had no answers, despite the severity in her decline.

Desperate, they took Belle to Southampton General Hospital. She was so unwell on this admission that an MRI was ordered that night. Jemma and Lee were told that Belle had a brain tumour that was now so large it occupied two thirds of her brain.

Belle immediately underwent seven hours of surgery, which saved her life. They were able to fully remove the tumour, but Jemma and Lee were told she would never walk or talk: to get at the tumour they also had to remove a quarter of her brain. They were devastated.

Due to the high grading of Belle’s tumour she required 14 months of intensive chemotherapy.

This felt worse than all that they had endured already. During this time Belle was seriously unwell and it was heart-breaking to witness.

They were referred to Rainbow Trust for support and Family Support Worker Mandy has been there for them. Mandy was able to come to hospital and give Jemma and Lee emotional support while Belle was admitted. Jemma says: “This was incredibly helpful. Mandy quickly became a huge part of our lives and is always compassionate to our needs. There have been so many ups and downs during our cancer journey and Mandy has been there throughout.“

The pandemic has been incredibly hard for the family. As Belle has been having chemotherapy, her immune system is very weak so they had to shield. Having five children at home, unable to go out, made things very difficult. The boys would constantly argue; additionally, Jemma tried to juggle home schooling the boys with caring for Belle. At times it felt completely overwhelming to her.

Mandy worked with the children to give them time out from an incredibly traumatic experience and has given emotional support at school for them.

And she has been there for Jemma too: “I was always able to talk to Mandy when things were getting too much or when we had updates from the hospital that I wanted to talk through,” said Jemma.

Bella did start to walk and talk and hit milestones in line with her age. This is beyond anything anyone could have imagined, given she has a large proportion of her brain missing. And she has continued to surpass and surprise all who know her.

Things would've been very different without Mandy by the family’s side. Thank you for all you to do to enable this support.

Belle, three months after her brain surgery
Belle, three months after her brain surgery
Family Support Worker Mandy
Family Support Worker Mandy

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When Holly’s son Oliver was born at their local hospital, he was immediately rushed to Royal Manchester Children’s Hospital to have emergency surgery at just one day old.

Their first four weeks in Newborn Intensive Care were overwhelming for her and her husband, Dominic. Holly says: “Every single day it felt like we received more bad news, another thing wrong with Oliver. Another diagnosis to get to grips with and another specialist consultant to add to the list. We were completely consumed, overwhelmed and in shock.”

Oliver was diagnosed with a rare condition where you have a collection of birth defects called VACTERL. Each letter stands for a different area where a defect can be present and Oliver has five of the seven defects.

The most complex treatment is for his life-threatening kidney disease. His remarkable renal team kept him off haemodialysis (a procedure where the blood is pumped into a machine that filters it before being returned to the body) for two years, with an ever-changing combination of medicines, special feeds, tube feeding and fluid management.

Oliver’s condition is incredibly complex and means he has considerable ongoing health care needs and his mobility is affected. Oliver has 14 consultants and a further 23 professionals involved in his care.

Marlene has been the family's Rainbow Trust Family Support Worker for three years now.

Marlene has been a Family Support Worker with Rainbow Trust for 19 years. During this time she has helped hundreds of children, parents and their wider families who have been affected by serious childhood illness, in many ways. Each and every family we support is different and their needs evolve over time, but some things are true for everyone who childhood illness touches: when a child is diagnosed with a life-threatening or serious illness everything changes. The pressure on the parents and the brothers and sisters of the seriously ill child is immense and dealing with it can be totally overwhelming. The experience could be utterly traumatic for the entire family.

Holly says: “For me, it’s the hard to describe, intangible things Marlene does that make the most difference, especially to my own mental wellbeing. Being able to talk openly and honestly to Marlene gives me an ‘outlet’ – a way of venting and processing everything.”

The most significant practical thing Marlene has supported Oliver’s family with is hospital transport. Holly and Dominic were both struggling to balance their part time jobs, getting Oliver’s six-year-old brother, Thomas, to and from school and driving to Manchester – a four hour round trip - three times a week.

This was exacerbated by the pandemic as a lot of their support stopped. Rainbow Trust put the relevant COVID-19 measures in place and Marlene started to take them to Manchester once a week. This has made a difference not only on a practical level, but also a financial and emotional level to the family.

Marlene also provides sibling support to Thomas, who needs dedicated time and attention.

If you can help this Christmas please donate today so more families like Oliver’s can benefit from this invaluable support. To some families the help of a Family Support Worker like Marlene is a lifeline.

Please accept my warmest wishes for a peaceful and happy Christmas.

Oliver very ill in hospital
Oliver very ill in hospital
Big brother Thomas with Oliver
Big brother Thomas with Oliver
Family Support Worker Marlene and Oliver
Family Support Worker Marlene and Oliver

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Phoebe in hospital
Phoebe in hospital

Phoebe’s mum, Katie, first discovered that Phoebe was not well in February 2020 when Phoebe was two and a half years old.

She had been sick in the night and was just not herself when Katie found a big lump on the right side of Phoebe’s stomach. Katie and Matt, Phoebe’s dad, took her to hospital where she had a scan.

After the scan Phoebe was rushed for an ultrasound. The surgeon told them later that Phoebe had a stage two Wilms’ tumour (cancer found in the kidney). They were left feeling scared, hurt and angry.

Phoebe has a seven-year-old brother, Rory, and Matt and Katie were worried about how he would cope, how would they explain that Phoebe was very ill and that they had to be away from him for a whole week.

Katie and Matt were in hospital with Phoebe initially for seven days. She had MRI scans, CT scans, blood tests, a Hickman line fitted and her first dose of chemotherapy to shrink the tumour in that first week. They went back home for two days, and then back to hospital for the next dose of chemotherapy, which would continue weekly.

Phoebe had an MRI scan to check if the tumour had shrunk. As it had reduced significantly, just after last year’s first national lockdown started, Phoebe went back to hospital to have her kidney removed.

Due to lockdown only one parent could be there, and Katie and Matt juggled this between them. One week after the operation Phoebe was back on chemotherapy for 27 weeks, a double dose at hospital and a single dose at home, administered by a nurse.

The uncertainty that all of this brought to Katie and Matt was devastating. Katie was not coping well with her own mental health, confused about how to feel and process everything.

They were drained and exhausted.

They were referred to Rainbow Trust for sibling support and Family Support Worker Wendy started supporting Phoebe’s brother, Rory, in April 2020. Katie and Matt were concerned that everything going on with Phoebe would affect him and that he wouldn’t open up. But Katie told us “Wendy’s presence and personality has had a huge impact on both kids. Rory is very quiet, but Wendy brings him out of his shell. The energy Wendy has with them is effortless and some days we can hang back and enjoy watching them have fun with Wendy.”

Katie and Matt have a very supportive wider family, but they found Phoebe’s illness had an effect on many relationships and friendships.

Katie lost touch with a very close friend because they couldn’t deal with Phoebe’s illness. This has also had a detrimental effect on Katie’s emotional wellbeing, so Wendy has been giving her emotional support. Katie says, “Wendy always has time to listen and, although she supports the whole family, somehow she manages to support us all individually.”

Phoebe finished her treatment in October and rang the bell at Bristol Children’s Hospital to celebrate, a joyful moment for Phoebe’s family and hospital staff.

Due to the pandemic, Wendy had to adapt the way she supports the whole family. They have enjoyed going out for walks, scavenger hunts, singing, doing quizzes, doorstep delivery of Christmas gifts, virtual calls, including reading stories, and anything else the family may need.

Katie says, “We embraced Family Support Worker Wendy’s support; there is no need to be alone. You may have initial concerns that you may not connect but once you do you feel like the weight has been lifted. Life without Wendy would have been so much harder.”

Your donations make this work possible for families with a seriously ill child so we are very grateful for each and every donation we receive.

Thank you for your support. 

Phoebe and Rory
Phoebe and Rory
Phoebe celebrating end of cancer treatment
Phoebe celebrating end of cancer treatment
Family Support Worker Wendy
Family Support Worker Wendy

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Brothers Azaan, left, and Raihan
Brothers Azaan, left, and Raihan

Asia’s family was referred to Rainbow Trust in March 2020, at the very beginning of lockdown. All other external support that they received completely stopped, and that is where Family Support Worker Wendy stepped in to help them to cope

Azaan turned four during the first lockdown. He has a severe form of Joubert’s syndrome - a rare disorder that affects the brain, causing different degrees of physical, mental and visual impairments. Azaan has developmental delay, low muscle tone, respiratory issues, polycystic kidney disease, is non-verbal and visually impaired. He can’t hold his head up, is fed via a pump, sleeps about four hours a night and needs looking after 24 hours a day.

As Azaan grows, after months and months of hospital admissions, his condition is worsening. With a permanent partially collapsed lung he can’t be without oxygen when he has a cold or an infection.

Before lockdown, Azaan attended a nursery which gave Asia some time to catch up on some sleep and other jobs. But all the external support stopped during lockdown, and Asia found day-to-day life both mentally and physically draining.

Asia says: “Since I became a full-time carer, I have lost my identity. I have lost friends, I have lost my past way of life. My job, my career goals, my dreams, they all had to be forgotten. I don’t have a social life nor any time to relax and unwind anymore.”

Asia also has a nine-year old son, Raihan, who needs attention from her, and Asia was worried about the effect lockdown would have on him. Even before coronavirus, it was difficult to take Raihan out because Azaan has serious special needs and he is in and out of hospital a lot. Lockdown made everything worse.

Raihan needs fresh air, to run about, to enjoy time to be a child, to play, to be just a boy and Asia can’t always give him that so Wendy, their Family Support Worker from Rainbow Trust, started supporting them in April 2020, at the height of the pandemic.

Wendy introduced herself to Raihan by video call, and they went on to have weekly video calls which involved playing games, story reading, and general chats.

Wendy surprised them one day by knocking on the door with a box full of games, chocolate eggs and arts and crafts packs so Raihan could get creative and have something different to do.

All of this started to make a difference to Raihan throughout the following months and, when lockdown restrictions have been eased, they have been to the park, out for pizza and burgers and bought ice cream from the van – all things that a regular nine-year-old would do.

Asia says: “Most of my time is spent looking after Azaan and, unfortunately, Raihan has had to grow up pretty quickly. Like most children with siblings who have complex needs he is left on his own a lot.” This is where Wendy steps in and helps out: by taking Raihan outdoors or playing activities indoors, whatever he chose when restrictions have been eased, and by video call when in lockdown.

Raihan has opened up to Wendy and has started talking about his feelings. This is invaluable as he also needs dedicated attention and time to feel special - Wendy is giving him that.

“Wendy has been a big, positive change to my life. I know that Raihan has somebody he trusts and he enjoys both his time with her and happy trips out. I can see that he is becoming a happier boy.

“It hasn’t been easy, it is a lonely journey, a journey where most moments I live in fear and depression but with the help from Wendy we keep going,” Asia told us.

And Raihan said: “Wendy takes me to places and buys me ice cream. I wouldn’t be able to go to these places if she wasn’t there. She basically does everything nice for me. She is kind, really nice and amazing.”

Your donations make this work possible for families with a seriously ill child so we are very grateful for each and every donation we receive.

Thank you for your support. We can't do this work without you.

Wendy took Raihan to the park in his new bike
Wendy took Raihan to the park in his new bike

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Aimee and Phoebe
Aimee and Phoebe

My name is Aimee and I would like to tell you about the difficult journey we have been on since 2015.

My daughter, Phoebe, was just 14 months old when she was diagnosed with leukaemia. The whole world came crashing down for me and my husband, Nathan.

Phoebe spent two months in the oncology ward, very ill. We tried to keep things as normal as possible for Ollie, our three-year-old son, but juggling everyday tasks with Phoebe’s illness was very hard.

Rainbow Trust Family Support Worker, Amelia, started supporting us, providing sibling support to Ollie, playing, looking after him and comforting him.

It was such a weight off my shoulders knowing that Amelia was looking after Ollie so that I could be with my sick child.

Phoebe had chemotherapy every day for two and a half years and trying to split time between her and Ollie was really hard. With Amelia's support Ollie became a happier child, more confident and more settled. Amelia gave him play time and fun and emotional support - she was there especially for Ollie and this made a huge difference.

After nearly three years of gruelling treatment Phoebe recovered. But, just before Christmas last year, she relapsed.

Phoebe needed a bone marrow transplant so we faced a major medical procedure, the risk of side effects and Phoebe being in isolation at the hospital for at least six weeks.

Rainbow Trust Family Support Worker, Charlotte, started supporting Phoebe ahead of her bone marrow transplant but on 1 December Phoebe was admitted to intensive care. She was unable to talk or walk and slept for most of the days. Her brain shut down.

We were devastated and very frightened. For a while, the doctors could not work out what was happening and told us to prepare that Phoebe may not get better.

Family Support Worker, Charlotte, was by my side, focussing on my emotional and physical wellbeing at this horrendous and very scary time. Charlotte helped me to cope with the uncertainty of it all.

Then, the day before Christmas Eve, Phoebe woke up. This was a wonderful early Christmas present but we didn’t have a special Christmas, all together as a family, at home.

This is not the way it should be for a family at Christmas time.

After spending a short time at home Phoebe went back to hospital in January for the bone marrow transplant. Whilst isolating for six weeks in hospital, Charlotte visited to provide emotional support through play and allow her time to talk about her worries.

Phoebe went home in March but became really ill again and ended up in intensive care.

Since September 2019, Phoebe and I have been at home - and not in hospital - for only eight weeks and throughout all this time Charlotte has provided bespoke emotional and practical support, also innovating and adapting amidst a global pandemic.

Many life-threatened children and their families are living through traumatic experiences alone.With no support. No one to turn to. A donation this Christmas would help change that.

Thank you for all your support and whatever you can give today. 

Wishing you a peaceful Christmas.

Family Support Worker, Charlotte, and Phoebe
Family Support Worker, Charlotte, and Phoebe
Aimee and Phoebe in hospital, last Christmas
Aimee and Phoebe in hospital, last Christmas
Phoebe in hospital
Phoebe in hospital

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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
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