Daniel’s story
“Daniel was such a little devil for picking things up and putting them into his mouth, he was a typical toddler really,” said mum Alison. After we discovered the swelling on his tongue, doctors thought he’d put an object into his mouth which had embedded into his tongue and this had caused an infection. To be honest, I wasn’t that worried at first”.
Dad Richard, 41 first noticed that Daniel’s tongue had swollen and it had reached the roof of his mouth; Alison called their GP and was told to call an ambulance. “We were taken to the children’s ward and Daniel was given antibiotics and we stayed there overnight. Everyone believed that the swelling was a cyst or an infection. We were then given a letter to go to the Freemans Hospital in Newcastle so the doctors there could take a biopsy of the lump.
However, the swelling turned out not to be a cyst but a malignant tumour and in one short week, the family’s life had been turned upside down. Daniel was then transferred to the Royal Victoria Infirmary in Newcastle to start his treatment. Alison remembers “When the doctors explained what it was, I was speechless….this type of thing happened to other families, not to us. My first question to them was whether Daniel had been born with the tumour and our paediatric consultant had to agree that he probably had. At that point, everything seemed to drop into place; I now knew why Daniel couldn’t suck his bottle properly, the recurring chest infections weren’t just childhood infections and he didn’t have asthma. All of these things when you added them up was something much more serious…Daniel had been dying for the last 13 months.”
The medical staff explained that Daniel would have to be operated on. The cancer was extremely rare but responded well to treatment. They explained that there was a 98 per cent chance of Daniel surviving; however they were told that there weren’t any guarantees and without the operation, Daniel would almost certainly die.
The surgery was pioneering; it had never been performed on a child before. The surgeons had to break Daniel's jaw in half to remove a large part of his tongue affected by the cancer. After the operation, Daniel spent the next ten days in hospital and shortly after that, began his chemotherapy treatment.
Finding out about Rainbow Trust
Alison remembers, “A social worker at the hospital first mentioned Rainbow Trust to us. She explained that we would need some kind of emotional and practical back up as the next few months would demand all of our strength and energy. She explained that the charity was there for situations just like ours. An assessment by the charity soon followed but I still wasn’t sure that we needed this kind of help”.
“I left it a couple of months but then decided we did need some kind of help. I wasn’t bothered about the house, I was worried that our other children, Thomas and Rachel, weren’t getting the one to one quality time that they were used to.”
Family support worker
The charity assigned Jill as the Sewell’s family support worker. Alison said “At first, Rachel had some doubts about Jill but after their first outing together, they became firm friends and she quickly became part of our family. My children used to call her ‘Postman Pat’ because of her red Renault Kangoo!! Over the coming months, Jill gave us the emotional support that we needed that kept us going. She became our guardian angel and I can say with hand on heart that we wouldn’t have coped without her”.
“Jill was with Rachel on the day of Daniel’s operation; they spent the day together while Richard and I, after seeing Daniel into theatre, went to the Metro Centre! I know it sounds bizarre but anything that we would have done would be odd. It was better than hanging around waiting at the hospital. Daniel would be on the operating table for a gruelling eight and a half hours and 5 September 2005 was the longest day of my life and longer than all of my four pregnancies put together!!”
“I was so thankful for the help that we got from Rainbow Trust. All too often, I would see families on the same cancer ward as Daniel who buckled under the pressure as they weren’t getting the support from the charity that we were. Some couples that I met on the ward didn’t make it and their relationships broke down”.
The rest of the family also felt the strain of Daniel’s illness too. Rachel’s mood and behaviour had changed. She wasn’t having a good time at school, she was vomiting and having panic attacks. Alison remembers “I know that Rachel was close to Jill and confided in her. She suggested that Rachel might benefit from speaking to a counsellor for awhile to help her come to terms with what was happening to the family. This wouldn’t have occurred to me and Rachel did go for awhile which helped her enormously”.
Rainbow Fernstone
The family have also stayed at Rainbow Fernstone, the charity’s respite home in Hexham, where families can enjoy a much needed break away from the daily pressures of their child’s illness. The Sewells have visited Fernstone a few times and it has always been a place of great joy & fun for the children and a time of recuperation for Alison and Richard. Alison says “We all loved spending time at Fernstone and it enabled me to be a mother to my children again. When Daniel was in hospital, I used to go back to our house but never really spent any quality time with the children – there was always something to do like shopping, sorting out the bills or preparing for the next hospital trip. Fernstone allowed us to be a family again as all those domestic chores were taken care of. There is something very calming and soothing about the place and I was able to recharge my batteries. In the evenings, after the children had gone to bed, Richard and I were able sit down together and have a glass of wine….we could be a normal couple there too.”
“Of course, we're not out of the woods yet, Daniel finished his treatment on 22 October 2005 and he’s making fantastic progress. We still have a way to go until he’s been in remission for five years. As Daniel is getting better, our time with Rainbow and Jill has come to an end. Only last month, Jill took us to the hospital for the very last time and we were all a little sad about it. However, I know that I can always pick up the phone to them at any time.”
The Sewell’s connection with the charity is far from over! In November 2006, they were asked to appear of the BBC’s Children in Need appeal to talk about the charity’s work with families like theirs. Alison adds; “When the team asked if I would like to be involved in the appeal, I didn’t hesitate. I know that the charity desperately needs funds to keep their services going and this was our chance to give something back to the charity. We as a family have also been doing a bit of fundraising and we’ve reached nearly £3K! We can never repay back what Rainbow Trust gave to us; it is the kind of support that money cannot buy!”
“Naturally, there will be a time when we will have to move on and say goodbye but I will always be indebted to Rainbow Trust for the support they that offered not only to Richard and myself, but to the whole family”.
