The Dickenson family live in St Austell and have been involved with Little Harbour since spring 2020.
Seth, the youngest of Sam and James’ four sons was diagnosed with medulloblastoma in December 2017 when he had just turned 4, his brain tumour was the size of a golf ball. He had surgery just before Christmas and spent Christmas Day 2017 in PICU. Seth went on to have radiotherapy and chemotherapy and rang the end of the treatment bell in October 2018.
However, in February 2020 the family found out that Seth’s cancer had returned, this time another tumour had grown on the right ventricle of his brain. Seth had more surgery, more chemotherapy as well as gene therapy treatment. He was discharged from Kings College Hospital just as the coronavirus pandemic brought with it national lockdowns. It was then that Seth’s family contacted Little Harbour.
“Initially we just visited Little Harbour for day visits or for lunch, popping in and getting to know the team.” explained Seth’s mum Sam.
“At first we felt bad for being there, Seth seemed relatively well in himself but on reflection those visits were invaluable; we got to know the hospice and the team and they got to know us, our boys – Seth 6, Rufus 11, Arthur 14, Isaac 16, and our dynamic.
This meant that when things became more difficult Little Harbour wasn’t a new environment for us, it was like having an extended family.”
In autumn 2020 Seth suffered two setbacks; his scans showed that the drug trial he was on wasn’t holding the cancer back, it had spread significantly through his brain and spine and he also had a stroke whilst under anaesthetic the day after his 7th birthday. This left him paralysed on one side and he had lost his speech. At this point Seth started to receive palliative care from the Little Harbour team.
Seth spent Christmas 2020 at home where he started to get some of his movement back. “We had three Christmas Days that year because we knew it would be Seth’s last Christmas with us” Sam said.
From February 2021 onwards the Little Harbour team also visited Seth at home. Home visits were something the team had started doing during the pandemic and they provided the family with the opportunity to see friendly faces but also get the support that they needed through some very challenging times including when Seth was in a coma for two days.
Sam explained the rollercoaster their family went through; “Seth was famous for keeping us on our toes and nearly dying multiple times. He was a strong character and this certainly shone through.
“Without Little Harbour we would have been stuck in hospital for a very long time, and during a pandemic.
We genuinely believe that being at the hospice kept Seth going, he didn’t want to die while he was at the hospice where there was lots of fun happening around him, he wanted to carry on.
“To him the hospice was the place to have fun, playing Just Dance and Mario Kart on the Wii. One day in soft play he even managed a few steps, this just wouldn’t have happened if he had been in hospital environment all that time. Little Harbour definitely gave our family a few more months together.”
Mum Sam reflects on Seth’s determination; “There was a time after his stroke where we thought we were never going to hear him speak again. We had gone for a walk in Charlestown and we got chatting to a busker, totally out of the blue Seth decided to start singing Bob Marley, completely randomly chosen but we felt like it was his message to us "every little thing's, gonna be alright!" and the guy grabbed his guitar and joined in! We explained to the busker how poorly Seth was and he got quite emotional. It was a really special moment and it is memories like that I don’t think we would have if we hadn’t of had the support of Little Harbour.
“People see hospices as just respite and very medical but Little Harbour was so much more than that to us. They are an extended family, a security blanket, there was never any judgement, they let us do what we needed to do but were there for us all.”
Seth died at home on 10 May 2021 aged 7 and then was moved to Starborn, a special bedroom at Little Harbour.
Sam said “After Seth died and we were back at Little Harbour his brothers were being typical boys, running around, jumping out on the nurses to scare them dressed as bears but that was the beauty of it, however each of us coped they let us do what we needed to do.”
6 weeks after Seth’s death, on Father’s Day, the family returned to Little Harbour for lunch.
Sam said “When we were leaving, Rufus (11) said how much he loved it and didn’t want to leave and it was then that I realised how much of an impact this place had had on our whole family and not just Seth.
“It provides such a safe space for siblings too, the sibling team did a fantastic job with our boys who are a house full! They knew that certain activities just weren’t going to be for them but they gave them the support they needed and continue to do so.
I hadn’t anticipated quite the affect Little Harbour would have on us all, it was invaluable and very unexpected.
“Since going through all of this I am very much of the opinion that if reading our family’s story means that one more person gets checked for something they aren’t sure about and their family doesn’t have to go down the road that we went down then that is a result in my eyes.
“We had no inkling of what was wrong with Seth, absolutely no idea, so if you or your child thinks something isn’t right, always go and get it checked.”
Many family friends are now doing different things to help raise funds in Seth’s memory including Denice Cartwright, who has collaborated with Seth’s mum Sam to make and sell bespoke #TeamSeth candles. As Seth was a beach lover the candle is scented as paradise beach and Sam helped design the labels. Denice is making these candles in her own time and donating 50% from each candle sold to Little Harbour. Over 120 candles have already sold with 80 selling in the first 24 hours.
Denice said “I have a team of volunteers helping so that we can raise as much money as possible. Let’s do the Dickenson family proud.”