Being able to make Michael’s favourite meals like Shepherd’s Pie and Lasagne made it special
It wasn’t so much the room that was provided by The Sick Children’s Trust that was invaluable to us, it was after that. Michael liked having me there on the ward, so I slept by his bedside when I could, as he didn’t want to be alone but I was still allowed to use Acorn House. Being able to pop over during the medical rounds for a shower or a bath was great but it was being able to spend an hour in the kitchen, making Michael’s favourite meals like Shepherd’s Pie and Lasagne, that really made it special. I felt useful that I could help my son in this way.
There are a lot of tributes for Michael, which is comforting but it feels like a waste that someone who made an impression on so many people was taken at such a young age. Michael was just 15 when he died. Six years earlier in November 2013 I noticed some unexplained bruises and before I knew it we were being rushed to Addenbrooke’s Hospital in Cambridge, far away from our home in Norfolk, to begin treatment to beat leukaemia.
We didn’t know much about The Sick Children’s Trust until 2017 when Michael relapsed. Again it was in the November, and Michael was at school. He suddenly lost vision in his eye which was a result of the cancer coming back in his optic nerve, blinding him. This was just seven months after we’d rung the cancer bell at the hospital to celebrate the end of treatment. As we were in pretty much full time from then until May 2019, we used Acorn House more. People won’t realise it but without Acorn House it would be almost unliveable having a child in hospital. I could do a week without it, maybe two weeks at a push but any longer and you need a ‘Home from Home’. I could batch cook and store it in the freezer and make sure my child was fed, as Michael was very particular and didn’t like the hospital food. Having access to Acorn House saved us a fortune and we created positive memories as when we were allowed to have an hour off the ward, I’d wheel Michael over and sometimes he’d help me cook.
Michael wasn’t only my son, he was my friend. He was diagnosed with mixed neurological disorder and Asperger’s syndrome so growing up he was into everything and was full of energy – bounce, bounce, bounce every day. He was cheeky, super intelligent and had a good sense of humour. When the cancer came, it took away his energy but it didn’t take away his personality. He took everything on the chin and breezed through it.
By April 2018, we’d discovered that Nathan, Michael’s younger brother by a year, was a perfect match for a bone marrow transplant. We headed to Bristol to undergo the transplant and were there for three months. It seemed a success, but in the November of that year we were back in Addenbrooke’s as Michael had a suspected lung infection and pneumonia. What was actually happening was that Michael’s lungs were so thin that air was escaping out of them into his body.
Michael died as a result of this on 22 May 2019. That morning he was so happy because the RAF Lightning Rally Team made a surprise visit to the hospital. Chris, who headed up the team, opened the door for Michael to get in and rev the engine – he was buzzing. Michael made such an impression on Chris that his name is tattooed on the car now, and that car joined Michael’s funeral procession.
Acorn House made our time in hospital a little bit easier, so Chris and the rally team set up a fundraiser in Michael’s memory for The Sick Children’s Trust. Unless you’ve lived that life, had an oncology child, and lived in hospital for months at a time you can’t understand how everything changes, how your priorities realign and how you somehow learn to manage. Acorn House helped us cope – Michael was comforted by the food I made him and felt safe knowing I was never far away at Acorn House. Spending an hour there, having a bath was really important for my wellbeing.
I love talking about Michael, it reminds me he wasn’t a dream. He was real and not just to me, but to everyone who met him. He made an impact. I know this because of the outpouring of love towards us at his funeral. Michael’s friends and family helped us raise almost £1,000 then and there for Acorn House – and we’ve raised more with the help of the rally team and our online fundraising totalling £2,100 altogether.
Although it can be hard to see, there is light at the end of the tunnel and I am determined to stay strong, for both Michael and Nathan.
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