Physical Health United Kingdom Project #9284

Supporting Terminally Ill Children

by Rainbow Trust Children's Charity

Project Report | Dec 10, 2020
Christmas is the perfect time to give hope

By Aimee | Mum to Phoebe, Ollie and Myles

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

Aimee and Phoebe in hospital, last Christmas

Phoebe in hospital

Links:

Read Phoebe's story

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Oct 26, 2020
Pandemic Pressures - The Struggles and Resilience of Families Caring for a Seriously Ill Child

By Hanne Widmer | Project Leader

Our latest report, #PandemicPressures, outlines the change in the role of our Family Support Workers throughout the COVID-19 pandemic to ensure families caring for a life-threatened or seriously ill child still get the support they need.

Family Support Worker, Charlotte, was using child-led play but when lockdown began, it was suddenly necessary to switch these sessions to video calls. Charlotte provided 13 families with this support, virtually playing each week with children between the ages of three and 14.

She said: "Whilst enjoying playing together with a sibling of a little girl who is recovering from cancer, she unexpectedly said to me, 'Charlotte, I would really like to talk to you about my feelings'. Each child is different but most of them jump straight into the world of play, and I will end up going wherever that takes us.

"I've been on a virtual pony trek (fashioning a pony from a stool), pretended to be a Teenage Mutant Ninja Turtle, had a teddy bear's picnic and even hosted a birthday party for the Gruffalo."

Charlotte is continuing to provide a mix of face-to-face support and virtual play depending on the family's circumstances.

Rachel's son, Frank, 12, has Batten Disease and is completely reliant on others for his care as he cannot move himself or communicate. He is especially vulnerable to chest infections which means COVID-19 is a grave threat to his health.

In case Rachel or her husband became ill, she ran through Frank's medication with her older children who were 16 and 19 at the time.

She said: "They were prepared to do everything they could, and they had to have a crash course in how to do things... I'm sure that was quite daunting for them."

Looking ahead, Rachel continues to feel anxious and will remain vigilant. "The virus has not gone away. Frank is still very vulnerable."

Rainbow Trust Children’s Charity has quickly innovated and adapted its service, in line with local guidance, to make sure that as many families as possible receive the tailored support that they need, whether virtually or face to face.

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.

Family Support Worker, Charlotte

Frank, who is supported by Rainbow Trust

Links:

Pandemic Pressures, living with childhood illness in Covid times

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Jun 30, 2020
Helping life-threatened children like Amelia during Covid-19

By Sarah | Amelia's mum

Amelia in hospital

I hope you are safe and well.

Our daughter, Amelia, is three years old and has Angelman's Syndrome and chronic lung disease. When she became seriously unwell it was such a scary time for us all.

With everything going on with Covid-19 I was the only one allowed to be with her in hospital, leaving my husband at home with our two younger children.

We were not allowed any visitors and because our household is isolating, getting supplies was near on impossible.

Our Rainbow Trust Family Support Worker, Amanda, has been literally a lifesaver. She kindly picked up some clothes, toiletries and supplies from home (following all social distancing rules), and also has done some shopping for us and dropped them to me both whilst we were in hospital and then again when our daughter was transferred to the Intensive Care Unit.

The journey as a whole has been incredibly scary and hard, but Rainbow Trust Family Support Worker Amanda took some of the strain and worries away by helping with such simple tasks (that normally we would have taken for granted) and by her invaluable emotional support.

Some of the families Rainbow Trust support have needed their Family Support Workers to source medical and food supplies and drop them to their doors. Family Support Workers have also been providing transport to dialysis sessions, taking breast milk from new mothers unable to see their premature babies in the neonatal units because they had coronavirus symptoms, helping arrange children’s funerals and providing bereavement support to the devastated parents and siblings. They have been on the frontline of the coronavirus pandemic.

We will be in hospital for a while longer and our family will continue to be separated. We can’t see or visit each other and Family Support Worker Amanda helps me coping with this pain.

We can't thank her enough and I would urge you to support this wonderful charity.

Sarah xx

Amelia

Links:

The crisis continues

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