Supporting Terminally Ill Children

Little Michael spent his first birthday in good health, it wasn’t until his mother took him home from his party that she watched him deteriorate in front of her eyes. He became extremely upset, and very lethargic and when she put him to bed, he screamed and wouldn’t settle. The next day Fran, his mum, took him to the doctor who found a rash which the doctor attributed to meningitis and a temperature. He was admitted to hospital and was put on a five day course of antibiotics.

Three weeks later Michael was readmitted to hospital after doctors found that he had a rare blood cancer that they hadn’t initially detected. Michael’s family was told the only cure was a bone marrow transplant. For this he had to be admitted to hospital for at least eight weeks. Unfortunately after his transplant he contracted a number of near fatal illnesses and twice, his mum and dad were told he probably wouldn’t survive.

Rainbow Trust Children’s Charity was introduced to the family just before Michael had his transplant. Before that Fran, Michael’s mum, had tried to put strategies in place to help her cope as she doesn’t have a family around her. Oonagh, a Rainbow Trust Family Support Worker, gave Fran the respite she desperately needed by sitting with Michael while he was in treatment so she could take a break or get some fresh air. After the transplant, Bryan, another of our Swindon based Support Workers supported Fran three or four times a week. “He’d come in at nine in the morning so that we could take a break, take a shower or just have some time to ourselves to refocus. He worked in terms of what we needed. Any help was fantastic!” says mum.

Michael was in Bristol hospital for 20 weeks and in isolation for 16 weeks. He had a number of setbacks and his fragile body began to shut down and once again, Fran and Jason, Michael’s dad were told he could die. Nobody had ever survived the illnesses he endured and in some instances the level of infection or virus was more than doctors had seen in a little boy his age. For eight weeks his mum and dad thought that they would lose their son forever but this strong and courageous little boy fought back and began to improve.

Oonagh would also take Michael’s brothers to see him in hospital and would stay with Michael so that Fran could have some time with her other children. Oonagh took the boys out separately and managed to organise a day at a Porsche garage for Daniel, Michael’s older brother. Daniel loves garages and his mum still speaks of the day fondly. “It was so special for him. It made the boys feel like there was still some good stuff in their lives and that they weren’t just being left on their own. I think they felt like Michael was getting all the love and support so these special outings lifted them and made them feel equally special, important and valuable.” remembers mum.

Rainbow Trust was with the family through their toughest time. When Michael was desperately ill, Bryan supported Fran emotionally. He listened compassionately and, “he supported what I was saying, agreed that it was horrendous and told me that what I felt was normal.”

Oonagh would ring “out of the blue” and offered Fran emotional support as well, “They seemed to be there from every angle; they supported me emotionally, they supported my children, they provided transport and respite care when it was needed. They did everything and whatever was needed.”

“Without Rainbow Trust, life would have been a completely different story in terms of coping, in terms of the trauma of what was happening. It was just Jason, Michael’s dad and myself doing every other night in the hospital and doing shifts all day and every day. I don’t think I would have coped on any sort of level if Rainbow Trust hadn’t come in and provided us with the respite. Their support was like light at the end of the tunnel. Michael was so well looked after by Rainbow Trust that we felt comfortable leaving him with both Oonagh and Bryan. They did over and above what they had promised, we were just clinging on giving lots of cuddles and half-heartedly playing as our minds were on what the consultant had told us and we were questioning what was going on. When Rainbow Trust came in, the focus was on Michael and that was lovely. I could see how much it benefitted him too. I wouldn’t have coped if they weren’t there to help.”

Michael is now three years old and is a picture of health, you’d never guess he was ever on the verge of losing his fight against cancer. For now, he has check-ups at the hospital and Fran has been able to share her experience of our support with other families going through similar treatment. “I told another family that Rainbow Trust is amazing, I gave examples of what they had done for us and explained that they do whatever is needed. I also told them that Oonagh had done something special with my older children so the whole family was supported. It’s invaluable and I would highly recommend Rainbow Trust.”

“I can’t convey how grateful I am to Rainbow Trust, but I am. It made a huge difference and the space allowed me to focus on the fact that Michael was going to get through this, even when the doctors said he wouldn’t. I could still walk away knowing that Michael was being looked after. I can’t say how grateful I am but I am.”

“When you have a terminally ill child, it’s the end of your world, you have nowhere to go and Rainbow Trust is like a knight in shining armour turning up. You don’t even know this kind of support is out there but when you find out they are there, it’s invaluable and brilliant,” says Michael’s mum.