Support Families Who Have a Terminally Ill Child

When doctors found a tumour in her son’s liver, Marte found it difficult to cope. This is her story.

"When Fabian, my son, was two and a half, he was seriously unwell but specialists and doctors told me he was completely fine. I knew he wasn’t.

When he stopped eating and was in serious pain I took him to our local hospital, where they couldn’t identify what was wrong with him and we were referred to Brighton Hospital. Within half an hour being there we were told he had a big tumour on his liver. I didn’t know what to do or how I would cope.

He started his chemotherapy at The Royal Marsden Hospital soon after. As the tumour was very big, doctors wanted to shrink it as much as they could before operating. When they did operate they had to remove part of his liver as well and chemotherapy continued for two months to try and ensure all of the tumour had gone. Unfortunately, Fabian’s hearing was damaged by the treatment and he now has hearing aids in both ears as a result.

My husband had to take days off work to come to hospital but he couldn’t do this every time so a friend referred me to Rainbow Trust and our Family Support Worker, Jayne, started working with us very soon after that.

Jayne helps and supports us in many different ways. We couldn’t travel by train due to the high risk of infection for Fabian so she helps by driving us to and from hospital. This is of huge help not only to avoid infection but because it means one less thing to worry and stress about: there are always problems parking at the hospital so having Jayne there means I am not late or stressed when we arrive for treatment or to see consultants.

The time in the car is good for me too: while Jayne drives we talk about my worries and concerns, about how this is affecting me - she gives me emotional support, which I really need.

By the time Fabian had finished his chemotherapy, I had given birth to my daughter, Hania, so going to hospital with Fabian became even more stressful. Jayne would help by looking after Hania while Fabian had scans and x-rays. Doctors tell me there and then what is going on so I have to concentrate and listen carefully. Knowing that Hania is safe with Jayne means I don’t have to worry about her and I can have all my attention and focus on what the doctors are saying.

All of our extended family is in Poland, so we don’t have much support around us. Jayne has been amazing, a constant presence with practical solutions and really helpful. She would always think about how she could help us and would offer advice if we need it. I was really lucky to find Rainbow Trust as I didn’t think there would be anyone to help families such as mine. We were on the edge. Everything was too much to cope with.

It’s always so good to open the door to Jayne and her smiley face. She is literally the right person, in the right place ,at the right time – she has helped us so much.

Jayne is doing a very difficult job, helping parents and seriously ill children; she is amazing and I am really grateful for all the incredible support she has given me over the past three years."

Your donations and support enable families who have a child with a life-threatening illness to make the most of time together, helping us provide expert, practical and emotional support, where they need it, for as long as it is needed.

Thank you.

In March 2018, Phoebe was diagnosed with Fanconi Anaemia (a rare disease that affects the bone marrow which results in decreased production of all types of blood cells). She’d had severe pneumonia over Christmas, and had blood tests done.

The tests revealed that Phoebe’s bone marrow was failing so she had a bone marrow transplant (BMT) in July 2018. Tom, her dad, was a donor, which is very rare. If Phoebe hadn’t had the BMT when she did, she would have been more susceptible to leukaemia later on.

Phoebe had to spend 37 days in complete isolation after the transplant, where she could not have any visitors aside from mum and dad. They had to scrub in every time they went in and out of the room and all they could do in there was keep her company, watch some TV and play games, day in and day out.

Then, Phoebe was in semi isolation from August 2018 where she couldn’t mix with people outside of the family as her immune system was still compromised. It’s only now that Phoebe is able to start seeing friends and going to parties.

Whilst in hospital, a friend recommended Rainbow Trust to help the family better cope so they met Monica, a specialist dedicated Rainbow Trust Family Support Worker.

Both mum and dad work so they didn’t know anything about the medical world or the benefits out there for families like theirs. Monica from Rainbow Trust was a huge help.

Monica would also spend two hours with Phoebe so mum could get out for a break. Those days in hospital were so long - so the break made such a difference to mum and dad. Phoebe absolutely loved spending time with Monica and mum could spend some time supporting her other daughter, Harriet.

Phoebe’s mum said: “Having our Rainbow Trust Family Support Worker, Monica, has been a huge support to me and my family. Having Monica come in to give us a break made such a difference for all of us. She has supported and guided us through a very difficult year.”

When serious illness affects a child like Phoebe family life is turned upside down and time becomes more precious than ever. Rainbow Trust pairs each family with a dedicated expert Family Support Worker to help them face and make the most of each new day.