Christmas will never be the same for Scott, Becky and six-year-old Ollie Rogers. This time last year, like any young family, they were relishing the prospect of a hectic, fun-packed festive period. Little did they know that just a week into the new year, life would change forever.
Their world turned upside down when Ollie’s three-year-old brother, the “cheeky, special and loveable” Fin, was diagnosed with Leukaemia. He put up the bravest of fights, going into remission during the summer months, but the cancer returned and he died on 19th October 2022.
It was, and continues to be, a harrowing time and while proud to sing from the rooftops about their “little warrior”, Scott and Becky are also keen to shine a light on the support they received from EACH. They cannot imagine dealing with their son’s end-of-life care alone and are grateful for the memory-making opportunities presented to them.
“Fin was such a special, loveable and happy-go-lucky little boy – cheeky and mischievous with a real sense of fun,” said Scott. “He enjoyed making people laugh and you never knew what he was going to do next. He loved hiding things and sometimes if we couldn’t find one of our shoes, we always knew who was responsible! Fin was never naughty, though. He just had a glint in his eye and, thankfully, that never changed, even after his diagnosis.
“He also had the biggest heart and gave the best cuddles. They were amazing. He was such a caring boy and, despite being so young, he was always worried about other people. He didn’t feel sorry for himself and even when he was in hospital, looking out the window at other children playing, he didn’t complain or question things. He’d just make the best of his situation and would want to play eye spy. As parents, we tried hard not to show him how scared we were but he made it easier by being so strong.”
Becky says she could not be prouder of the way her son dealt with his illness and the rigours of treatment.
“He was a real warrior,” she said. “He had to go through some pretty awful things but kept smiling and asking if we were OK. I remember a real low for me was having to learn how to give injections. I hated causing him pain. I had to fight back tears but he was the one reassuring me, saying ‘it’s OK’. He took it in his stride.”
Scott and Becky, both 34, say the “unbelievable” speed at which things happened was one of the hardest things to deal with. This time last year everything was seemingly fine. With the benefit of hindsight, there had been odd tell-tale signs but nothing to cause undue alarm.
Fin had pneumonia last summer, in addition to a bad sickness bug. He also had a terrible cold sore and cut lip that refused to heal. Then the couple noticed their son getting more and more tired over Christmas. He said his legs were aching but they just thought it was a consequence of the hectic festive period and growing pains. Things then changed dramatically a week into 2022.
“I took Fin to a party and it was that evening we knew something was badly wrong,” said primary school teacher Becky. “I ran him a bath and noticed the most awful black and blue bruising on his spine. He could be a bit rough and tumble, like any three-year-old, but this was more extreme. We rang 111 and then everything happened so fast. We ended up in Colchester General Hospital that night and then being rushed to Addenbrooke’s two days later, on the Monday.
“On the Tuesday, three days after the party, we were told it was Leukaemia. Not only that, it was a rare type called T–cell Acute Lymphoblastic. Fin started having intense courses of chemotherapy and it was pretty harrowing, as you can imagine. Then we were given the news we’d been praying for – that the treatment was working and he was in remission. That was in May. We were overjoyed and thought everything was going to be OK. Unfortunately, the complete opposite applied.
“Fin relapsed in late August and we ended up rushing back to Addenbrooke’s. The Leukaemia was back; it was even more aggressive and unfortunately relapse chemo didn’t work. We were told it was terminal – a matter of days and possibly hours.”
That was on 7th October and Fin died on the 19th. The Rogers family were referred to EACH and spent a day together at The Treehouse, in Ipswich. The boys loved it and enjoyed playing in the woods.
“It felt so normal – a normality we hadn’t experienced for such a long time,” said Becky. “Scott, myself and the boys were able to sit and eat dinner together, something we hadn’t been able to do in hospital. They did various craft activities and we did some memory-making exercises, including handprints.”
In terms of the inevitable next step, Fin was keen to return to his home in Clacton. Two EACH nurses were present and the family say they were “incredible”.
“It was the most beautiful yet horrific week,” said facilities manager Scott. We knew the end was coming but tried to find the strength to make the most of every day, thinking it might be the last. We had a phone number we could ring for help and that meant the world. It was so reassuring to know there were people there to answer our questions.
“The nurses were amazing. They were so respectful and didn’t put us under pressure to do anything. They made the experience as bearable as possible. When the end finally came, they told us Fin was about to take his final breathes. They left us alone to cuddle and hold him. I honestly don’t know how we’d have coped without them. The alternative is unimaginable.”
After Fin died, Becky and Scott took his body to The Treehouse. There they stayed for three days. Families can spend precious extra hours or days with their child thanks to special cold blankets which chill a mattress, allowing the body to be preserved.
“The nurses still talked to him, even after he’d passed,” said Becky. It showed how much they cared and they did such thoughtful, beautiful things, switching the twinkling star lights on and putting a teddy in bed with Fin. On one occasion they even put his favourite programme on the telly.
“Even when it was eventually time for his body to be taken away they made sure he was wrapped up in a dinosaur blanket, which they specifically chose because they knew he’d love it. It was incredible and even though I’d been apprehensive beforehand, I’ll always be thankful for those three days.
“I admit I found it an odd thought, spending time together after Fin’s passing. However, now I can’t imagine not doing it. You don’t know how you’re going to feel until you find yourself in that position and we don’t have any regrets. It felt right. The care team always did the right thing by Fin. His body could have been taken straight to the funeral parlour and that would have been so much harder. Doing things this way, at home and then at the hospice, was calming and comforting.
“It gave us a chance to process what was happening and although there were always people around to advise us, they never put us under pressure. Those three days meant so much and it was a bit of closure for Ollie, especially. He was able to see his brother and we’ll always be grateful for that opportunity.”
Scott, Becky and Ollie are now preparing for a very different future and have already had one of three major milestones since Fin’s death. The second and third on that list are Christmas and what would have been his fourth birthday, in February.
The first was his funeral, which took place on 15th November. Becky and Scott were keen for it to be as happy an occasion as possible, with a belated Halloween theme.
“That was his favourite time of year and he loved the colour green,” said Scott.
“In Fin’s last week, we gave him Halloween and Christmas presents. Fin enjoyed opening them and then we donated the gifts to Colchester General Hospital and EACH. We didn’t want his funeral to be a sad day, even though it was obviously difficult and thought-provoking.
“Instead, I wanted it to be full of everything Fin loved. When someone dies there can be a pressure to conform with the norm and do the same as everyone else. The EACH team reassured us that it was fine to think outside the box and do what we felt was right.”
Scott and Becky plan to keep in close contact with EACH. They are attending a keepsake day and winter wonderland event before Christmas.
“I think it will be helpful speaking to other parents and families in the same position,” said Becky.
“We’re fortunate to have an incredible support network around us and people are so kind but it’s also nice to speak to others in the similar position. EACH continues to give us opportunities and, despite the sadness of what happened there, we like being at The Treehouse and feel a connection with Fin.
“It’s fun, colourful and friendly, like a nursery, and certainly not what I expected. Everyone has a preconceived idea and you think of it being a doom-and-gloom place full of sadness and death. In reality, it’s nothing like that and we certainly don’t see it negatively. The same goes for Ollie.ac
“We’ve already been back once and found that OK. It brings memories back, of course, but it’s such a calming, thoughtful environment. What’s happened this year has been the worst experience of our lives.
“Nothing could have made it easier but the care team definitely helped, just by doing simple things like keeping us fed and watered. They looked after us and made sure we were as comfortable as possible. They were amazing and although we’ve been on the most horrific journey, we feel lucky and blessed that they were part of it.”