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.