Watch a film about the Kelly family story
Throughout these years, the Kelly family was supported by Rainbow Trust. They visited Rainbow House on several occasions and a Family Support Worker, Ben, was assigned to them.
Harriet had three sisters; Katie now ten, Emma, five and Jessica who is three. Here, parents Kevin, 46 and Fiona, 34 describe their “girly girl” whose love of everything pink even included pink fairy wings!
“Harriet was a real princess who loved dressing up; she was bubbly, fun, mischievous and sometimes very stubborn which served her well during her illness” said Fiona. “When she was two we noticed a change in her; she didn’t quite seem herself and her symptoms were vague. Luckily our GP believed us as parents and Harriet was sent to the local hospital for tests.” She was very quickly diagnosed with neuroblastoma and was referred to the Marsden. Treatment began almost immediately; she was started on chemotherapy and later had an eight hour operation to remove the tumour. This was followed by a high dose course of chemotherapy and then radiotherapy together with home treatment for a year.
Rainbow Trust
“I first heard about Rainbow Trust from one of the parents whose child was being treated at the Marsden,” remembers Fiona. “I needed to go to the local shops but I didn’t want to leave Harriet alone. They told me how Rainbow was helping their family. I wasted no time in getting in contact with them and that’s when Ben, our Family Support Worker, came into our lives. He helped us enormously with our other children; parents can’t always be fun during these times and Ben was fantastic with them. There were always jokes and lots of fun when he was around. If I needed to leave the children to do things, Ben would be there.”
Family support
Kevin said “having Ben as our Family Support Worker did me a power of good; I had another guy to speak to about what was going on. Naturally, Ben didn't have a magic wand to make it all better but I could get things off my chest. He wasn't part of our family and I could rant and Ben wouldn't get offended. We also went to Rainbow House and our children loved it from the first moment they got there. Sometimes they were so impatient to get there; they were putting on their swimming costumes in the car so they didn’t waste any time when we arrived.”
“Living with a life threatening illness can be very draining. Having Ben around gave me my strength back; in fact, it saved my sanity!” Fiona Kelly.
The initial treatment worked very well and Harriet enjoyed two years in remission and the Kelly family continued to visit Rainbow House. Fiona said, “when you’re living on borrowed time, you make the most of it. We loved coming to Rainbow House even when Harriet was unwell as it ‘lifted’ her and the other children. We had the chance to let out all our feelings including the bad ones. Sometimes considering what the children were going through, they misbehaved but this was understood by the staff – they didn’t judge any of us. Katie, our eldest would speak to one of the Respite Workers at the House – perhaps she felt as though she couldn’t talk to us as Kevin and I had enough to contend with. Sometimes I think she’s still a little wary about talking to me about Harriet.”
Kevin picks up the story: “Towards the end of 2006, Harriet had a heavy cold which wasn’t getting better so we took her back to the Marsden. The medical staff did tests and they told us that Harriet had developed tumours in her neck, mouth, liver and eye. Chemo was started almost immediately and initially it worked very well. We got some blood results back and Harriet had to hold off from any more chemo for a couple of days. Within such a short time, the tumours came back with a vengeance. Radiotherapy was suggested but she got progressively worse. We knew that our time with Harriet was now very short indeed.”
The last visit
Rainbow House had always been such a special place for the whole family. Harriet adored it and this was especially true of her last visit there. Fiona adds: “Harriet loved the peace and tranquillity of Rainbow House and we’d arranged it with the staff that Harriet would spend her final days there. I knew that she would be surrounded by lots of love from everyone. Harriet didn’t die at the house but her final few days were spent there which gave her a final ‘lift’. Two things stick in my mind about that visit; she was very weak then but that famous stubborn streak came out. She refused help from all of us to get to the swimming pool as she was determined to walk there herself. We'd got into the pool and again she refused any offers of help. When she was ready, she threw herself into the pool with great shrieks of delight – it was wonderful to see her so happy a few days before she died. Her last night was again very special. It had been snowing hard and she loved to see it falling from the sky. I lifted her out of bed and watched the wonder on her face – again a moment that will be with me forever.”
“In the morning, we took her to the Marsden but there was very little that they could do for her. She died very peacefully a few hours afterwards. Staff from Rainbow Trust brought her sisters to the hospital so they could say goodbye. We took Harriet's body back to Rainbow House wrapped in her favourite blanket and Hamish was by her side - her favourite bear. We all stayed there for the next couple of days. It meant so much that we could take our time to say goodbye; our friends and family were able to come to the House to say their farewells too. We felt so supported; even though it was a very sad time, it wasn't a bad time. In the evenings after the children had gone to bed; Kevin and I could stay up and talk to the staff. Also, when one of us needed to be alone; support was never far away or someone to watch over the children. Harriet's funeral was a celebration of her short life and staff from Rainbow House even came on their days off to say goodbye - that meant a lot to us.”
Life after Harriet
Fiona continues, “Since Harriet died in February 2007, we’ve been back to Rainbow House on three occasions. We still get so much from the visits as a family and we’ve many many happy Harriet memories stored there too. We spent Harriet’s first anniversary at the House and to be honest, I don’t know how we’d have coped if we'd just stayed at home.”
“We always knew that the prognosis wasn't good where Harriet was concerned,” remembers Kevin. “Katie was aware of how ill Harriet was but the other two were too young to fully understand. I know that it made Katie fearful. At least she was able to express these fears to Ben or the staff at the house – I think it helped her enormously.”
Fiona says, “I know it may sound corny but if Rainbow Trust hadn't come into our lives - I don't know what we would have done. One year on, it’s been a very difficult year and one of huge adjustment. We as a family still have a long way to go but knowing that we are always welcome at Rainbow House is a huge boost to us. Rainbow House has been a sanctuary for us all; somewhere to run to and let it all out. I would like to say a huge thank you to Rainbow for being there at our darkest times”.
