Terminally ill children in isolation need you

I have been working as a Family Support Worker for Rainbow Trust Children’s Charity for over two and a half years. The day featured below took place when lockdown restrictions were eased and I followed all protocols by wearing a face covering when doing face to face support, following social distancing when required and using hand sanitizer throughout the day.

I picked up seven-year-old Billy’s mum from Great Ormond Street Hospital. Billy is in isolation after having a bone marrow transplant at the end of October and had been staying with Mum for the past four days in isolation.

Whilst I drove Mum to the adult education centre where she is studying for a Certificate we talked about how she has been and she told me how Billy is evolving and about her worries. She thanked me for the forty-five minutes lift - this normally takes her two hours, having to take three different buses.

Then I went to their house for a play session with her two youngest daughters; they were both home from nursery, which was closed because of COVID-19.

During the two hour session we had lots of fun playing tea parties, making towers with their Duplo bricks and I read them Peppa Pig stories, which they really enjoyed.

I then went to an after-school activity session with Jay, who is nine years old, and his older brother Matthew, 11 years old, at their home. I have been supporting them for the past eight months. Jay has chronic kidney disease so he must catheterize his bladder every two to three hours to reduce the stress on them.

Jay and I had fun painting and we chatted about how school was going. Then, Matthew and I had fun making superhero Lego figures and chatting about what we would have as a superpower if we were a superhero.

Matthew told me that he would like to have either a hammer like Thor or the claws of Wolverine. I told him that I would like to have the superpowers like the Flash or be invisible like the invisible man.

We also chatted about how school was going as he had started at a new school after moving house. He told me that he was doing okay, that he has made some new friends and is enjoying his lessons.

Before I headed back home, I had a chat with Mum and she told me that, as they can’t afford a car, when they need to do a big shop they have to go by taxi, which stretches the family’s budget. I offered help to go shopping, providing transport to both reduce any risks of getting COVID-19 and reduce the cost for her. We arranged that I would come and see her tomorrow to take her to the supermarket.

This work is only possible thanks to your support. Thank you for all you do to help us deliver it to families with a seriously ill child duting these uncertain times.

Links:

• Never alone
• Our impact

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.

Links:

• Read Phoebe's story