13 Dec 2024

You never know what might be the tipping point: Simon’s story

Simon Chin, from Stamford in Lincolnshire, had always wanted to build his own ‘Grand Design’. After he retired in 2014 he set about making his dream a reality, designing and project-managing a beautiful seaside holiday home on land he’d bought at Looe in Cornwall. The house became a welcome family retreat for Simon and his partner Sharon, along with his three sons Phil, Michael and James, and his three grandchildren. 

But in late 2020 Simon, who was 65 at the time and retired from a varied business career, started to struggle with intense fatigue and found making the long trip more and more difficult.   

“He told us he felt rundown and generally not himself,” said son Phil, 38, who lives in Wheathampstead in Hertfordshire. “He went to the doctor and got referred for tests. He was given the official diagnosis of acute lymphoblastic leukaemia (ALL) in October 2020. It was a shock for all of us. He started chemotherapy within days at Peterborough City Hospital. It was mid pandemic at the time which meant it was extremely difficult to see him as hospital isolation regulations were very strict. It was a very intense time for all of us.” 

Simon struggled with chemotherapy side effects including hair loss, exhaustion and mouth ulcers.   

Phil said: “He never let on and didn’t want to burden us. But we knew it was hard for him. He was always such an overwhelmingly positive person though. He was more concerned how we would deal with whatever happen to him rather than what he would have to go through. He urged us all to keep supporting each other, which we have.”  

Simon’s chemotherapy was successful, but he needed a stem cell transplant to give him the best chance of full remission. His two sisters, brother and three sons were all screened for suitability.  

“My brothers and I were all found to be haploidentical matches which means about 50%,” said Phil, who is a chartered accountant and shares three children with wife Amy. “His siblings weren’t matches unfortunately. But in the end, it was decided to go ahead with a donation from my brother, Michael. The transplant took place at Addenbrookes Hospital in Cambridge in April 2021. It ended up giving us 18 months more with him, which was amazing.”

“We had a big family gathering for his next birthday in October 2021 which was nice as it was the first time we’d all been together since Covid. Family was the most important thing for him. He began to really enjoy life and having more freedom again. There were some ongoing health issues which came up from the treatment – skin problems, low energy and things like that. But overall, he got to go to his house in Cornwall again and spend time seeing his grandchildren grow up. My son Milo was born in January 2021 so he got to meet him and get to know him, which was precious time.”  

“Charity and giving back to society were always a huge part of Dad’s life. He would regularly give to children’s causes. He was always so grateful for his healthy kids and grandkids, and wanted to help give opportunities to other children. After he developed leukaemia, he changed his Will to include research and advocacy charity, Leukaemia UK.”  

Christmas 2022 was destined to be a family celebration at Phil’s house, with Simon and Sharon staying for the festive season. But, in the weeks before Christmas, Simon developed breathing difficulties and on 20th December he was taken by ambulance to A&E in Peterborough.    

“He’d been going in and out of hospital for investigations, but they could never really get to the bottom of it. Then he lost consciousness that day and was taken to hospital. When he got there, he had a cardiac arrest and was put in an induced coma. We took turns in being with him over Christmas and New Year, hoping he would come round once they removed the sedation, but it never happened. Eventually the doctors spoke to us and said they thought he may have sustained brain damage from the cardiac arrest. We then discovered that the leukaemia has returned, which would likely explain the issues he had been having, and due to its return he was put into palliative care.” 

Simon passed away on 11th January 2023 at the age of 67.  

A very generous Gift in his Will to Leukaemia UK was given by Simon as part of his legacy.  

“Having gone through the whole experience he wanted to help push research forward. Leukaemia doesn’t just affect the patients it affects the whole family, the nurses and doctors looking after the person, everyone. Simon always had nothing but praise for the way he was looked after and for the medical treatments that gave him extra time. He wanted to leave something meaningful behind in the hope that, at some point, there will be a cure for leukaemia and other people won’t have to go through everything he did.”

“You never know which donation will lead to the tipping point. We were pleased to be able to make the donation. It makes perfect sense to us that this is what Dad wanted. ”  

“We also set up a donation page for his funeral for Leukaemia UK. That was an easy process as well and raised £2000. Whilst ultimately, he didn’t manage to beat leukaemia in the end, the treatment he received gave him more time with his family and his young grandchildren which meant the world to him and to all of us in the family.”  

Inspired by his dad, Phil then decided to do even more fundraising – securing a place in the 2025 London Marathon which he will run to support Leukaemia UK.  

“I have done some half marathons and I always told myself I’d make the step up. I have applied for the London Marathon many times – safe in the knowledge it was unlikely I’d get a place! But this year I got it. It is an opportunity to keep honouring Dad and doing things in his memory. He gave my brothers and his grandchildren so much, and we want to give something back and keep remembering him.    

“We’ve kept the house in Cornwall as well. Dad always loved a project. He loved the TV show ‘Grand Designs’ although his own ideas were often only pipe dreams. But then he made it a reality. It’s a lovely place for us all to go together as a family now, with so many memories of him there. I think he would have approved.”