Rainbow Trust Children's Charity

Rainbow Trust Family Support Workers provide emotional and practical support to families that have a child suffering from a life threatening or terminal illness. They provide access to healthcare, education, therapy, welfare support and benefits for these families at the most traumatic time of their lives together with emotional support for the whole family.
Apr 16, 2015

A Family Story

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.      

Apr 15, 2015

Sibling Support

At 10 weeks old, Dominic was rushed into hospital with swelling and fluid on his brain and underwent emergency surgery to remove the fluid. An MRI scan, four days later, showed a cancerous mass on his brain, spinal column and central nervous system. Doctors told the family that what they were seeing was extremely rare and unlikely to be treatable. Dominic’s parents were told he probably only had three weeks to live.

During the following week, further biopsies and tests revealed the “tiniest glimmer of hope,” remembers Natalie, Dominic’s mum. There was a chance that the cancerous cells could respond to chemotherapy drugs but the consultant was hesitant as Dominic was so small and the drugs would leave him open to any kind of infection. He had to stay in hospital for the next five months and would not leave the ward in that time. Natalie stayed with her baby boy for those five months and worried constantly about him and Zach, her other son, who she could not see. She was isolated and governed by the hospital ward and Dominic’s treatment.  

CLIC Sargent referred Natalie to Rainbow Trust and Vicky, one of our Durham based Family Support Workers. Vicky visited Dominic in the hospital once a week which gave Natalie a few child-free hours where she would “grab a shower or get off the ward and relish the outside air.”

 “Parents who haven’t found themselves in similar situations cannot appreciate the dilemma of having a very sick child confined to a hospital ward. Despite the parent’s need to get away from it all, there is a terrifying fear of leaving their sick child unless they can balance it with the knowledge that their child is safe and cared for. I trusted Vicky from the moment we met, in part due to the fact that Rainbow Trust workers are well known to the other families on the ward going through similar circumstances and everyone sang Vicky’s praises. Primarily though, I felt comfortable leaving my baby with Vicky because Dominic himself appeared to love the time he spent with her.”

During those five months Dominic underwent intense IV chemotherapy and against all the odds, his next two scans revealed that the tumour had reduced in size. He was sent home and allowed to return to the oncology clinic on a regular basis for the next 12 months for oral chemotherapy administered by his parents one week out of every four. Dominic had to have an NG tube fitted down his nose to administer the drugs. 

When Dominic was diagnosed, Zach was five years old and he struggled not having his mum around for those five months. As much as Natalie tried to be there for Zach, she could only do so much. She told him he could talk to her about anything that was bothering him to which five year old Zach replied, “I can’t mummy, you’re never here because you live in the hospital.” Natalie was heart-broken seeing what an impact Dominic’s illness was having on his brother but she was unable to do anything about it at the time. This is where Rainbow Trust’s sibling support came in. Vicky took Zach on days out and to drop in groups where he met other children and families in similar situations. Zach knows his family life is not normal so Vicky has tried to let him do things that can help him feel more normal. At the drop in groups he can talk to other children who also have a sick sibling and he gets to do arts and crafts which is something he loves. The hospitals give their patients the Beads of Courage when they have been through various treatments so doing the arts and crafts at the drop in groups means he can take his own achievements home.

“Rainbow Trust Family Support Workers all know the siblings, they put the hours in,” says Natalie so she felt very comfortable leaving Zach with Vicky and the others as she knew they were aware of his situation and would look after him.

Shelly began supporting the family when Vicky went on maternity leave and Dominic adores her, so much so that “Shelly” was one of his first words. Once a week she visits the family and takes Dominic to soft play where he can play and be like other children his age.

Without Rainbow Trust, Natalie believes that the desperate situation they were in would have been worse. “With their help, they made our unbearable situation more bearable. Until you have walked in the shoes of a parent with a sick child, you cannot understand, but Rainbow Trust does,” says Natalie. “Rainbow Trust comes along and looks after your child for a few hours and you know you can trust them.”

Vicky’s weekly visits meant that Natalie knew she would have that break where Vicky would stay with Dominic and watch over him while Natalie went for a walk, got out of the hospital and walked into town, “just to be with other people in a normal environment. I’d immerse myself in the crowds, make phone calls or take a shower and wash my hair, without any interruption.” Natalie knew Dominic was safe, she knew that Vicky was happy changing his nappies with all his tubes etc and she knew that Vicky was an advocate for her child when she wasn’t there.

 “With Rainbow Trust I didn’t feel that my coping abilities were being judged. Other family members or families were always trying to give us useful advice but unless you’ve been in the same situation it’s difficult to do this,” says Natalie. “Rainbow Trust comes along and puts an arm around you and walks with you, understanding what you are going through.” The Family Support Workers come as often as they can within the confines of their diary. Shelly taking Dominic out has been good for his development as he missed out so much being in hospital and in treatment for so long. She still takes Zach out, picks him up from school and also takes him to sibling groups.

 Now that Dominic is well, Natalie knows that her family does not need Shelly’s help as desperately as others might. “Shelly does what she can. If something arose or we had an emergency, I know I could ring Shelly and I know she’d help,” says Natalie, “Rainbow Trust is fabulous.”

Apr 15, 2015

Why we need your support

When Charlotte, a single mum of one, discovered she was pregnant, she was so excited and happy but a pre natal scan showed that, tragically, her baby had a heart defect and was not expected to survive birth.

The hospital contacted Rainbow Trust and asked us to take care of Charlotte and her baby’s end-of-life care. They also asked us to help Charlotte to look after Alfie, her two-year-old son.

When Bryan, our Family Support Worker in Swindon, called Charlotte he discovered she was already in labour. She asked for his support and he went straight to the hospital. She asked him loads of questions and talked about death, dying and funerals – she was very open about it all. Bryan stayed with her and supported her throughout her labour and her baby boy, Charlie, was born without any intervention.

For a 21 year old, the birth of her baby and his imminent death left her reeling between feelings of excitement, relief, fear and grief. Charlotte hoped that he was all right - he looked ‘perfect’, with no signs of being ill. Bryan stayed with her until she settled and agreed to return in the morning.

Sadly, a scan confirmed baby Charlie’s condition and prognosis. Charlotte was very upset and wanted to be with Charlie at the hospice. While she was there, Bryan spent time with Alfie and took him to visit her. He listened to Charlotte as she talked about baby Charlie’s impending death, and together they made funeral plans.

While at the hospice, Charlotte wanted to take Charlie home to “see his home”, the bedroom she had prepared and for them to have some time like a ‘normal family’. Bryan and a hospice nurse accompanied Charlotte and her boys home. This time was very precious to Charlotte. She felt she could pretend that everything was normal.

Charlie lived for 19 days. After he died, Charlotte struggled to come to terms with his death and relied on Bryan greatly for emotional support during the week leading up to Charlie’s funeral.

Bryan continues to support Charlotte and Alfie. He takes them to the cemetery and also encourages Charlotte to visit Rainbow Trust’s local drop-in group for additional support.

 Bryan supported Charlotte through the most difficult time of her life. He will be there for her as long as she needs him.

 
   

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