A young man who tragically died from a brain tumour left his family a “love note from heaven” to help them grieve him.
Jay Kennedy, 20, was diagnosed with an incurable high grade astrocytoma – a brain tumour – after a seizure, headaches and vomiting aged 18.
Despite multiple surgeries, radiotherapy and chemotherapy Jay died with his family by his side. But in his final week he had repeated a series of digits to his mum, Dawn Kennedy, 54, which she realised were the password to his phone.
After unlocking his phone it revealed a document where Jay had been journaling since he found out he would die. Dawn says the journal was a “love note from heaven” which has kept the family going since his death.
Dawn, a farmer, from Ayr, said: “The timestamps showed he began writing just days after the doctors told us his chemo had stopped working and there were no more options.
“It’s overwhelming to think he focused on helping us cope, writing a journal to reassure us. It’s as if he knew how much we would need his words to carry on and I can never thank him enough for it. It’s a love note from heaven.”
Jay had a sudden seizure in January 2020 while at Strathclyde University but scans showed nothing wrong. But when Jay came home for the Covid lockdown he started having severe headaches, sickness and nausea.
Dawn decided to take him to A&E in May 2020 – where he had further scans which revealed a likely cancerous mass on his brain. They were blue-lighted to Queen Elizabeth University Hospital, Glasgow, and Jay was taken for surgery to remove 94% of the orange sized tumour.
A biopsy formally diagnosed Jay with an incurable high grade astrocytoma – news which Jay chose to hear himself first before relaying to his family.
Dawn said: “We walked in and I just knew. He said ‘it’s not good news’. He told us it as incurable. He articulated it all out. The surgeon said ‘you’ve got one outstanding young man’.”
Jay was stable after rounds of radiotherapy and chemotherapy but the family found out the cancer had regrown in a new site in December 2020.
Dawn said: “His balance started going. He had another brain surgery to remove that mass but in summer 2021 the family were given the devastating news the cancer had grown back in a third site.”
This time surgery was not an option and Jay could only try a chemotherapy which had a 10% chance of working.
Dawn said: “He was really weakened.”
In August 2021, Jay was told the chemotherapy was not working and he knew he didn’t have long left. Unbeknownst to his family he began writing in a journal every day for his family to read after his death.
Some of his entries read: “The reason I’m not scared of dying is that, if I had the choice of my life from 0 – 20 or an ordinary life to 80 I’d choose mine every time. I must find the strength to tell mum this I can’t think of a single thing I’d change from my childhood because it was honestly perfect.
“As long as I stress that I wouldn’t swap my life for anyone’s I’ll have done what I set out to with this journal. I don’t want people feeling sorry for me as I couldn’t have dreamt of a better upbringing ‘what is grief if not love persevering’ is one of my favourite quotes which I hope mum, dad and Blair can come to love as much as me.”
Dawn remembers Jay repeating numbers to her in his final week – and made sure she wrote them down. She twigged the digits where his phone password and decided to look at his phone just a couple of days before he passed away.
She said: “My heart leapt out when I opened it. He had put the document on the home page. He knew what grief was. He knew what we were going to face. He’d hoped we’d manage.”
Dawn was holding Jay’s hand when he slipped away at home in his bedroom on October 8, 2021. Since the family have leaned on Jay’s words to keep going and have raised more than £100k for several charities including Brain Tumour Research.
Dawn is now sharing some of Jay’s journal entries to raise awareness and give Jay his voice.
She said: “He starts it by saying ‘I’m not sure if anyone will ever read this but I hope it gets found at some point but my name is Jay Kennedy and I have brain cancer’. It’s his words – that’s more powerful than anything I can say. Sometimes I feel guilty to say I have it. Some people don’t get that chance. I know how lucky I am to have it.”
Dawn has also written her own diary every day since Jay got his diagnosis.
She said: “It pushes us on. It has given strength to people. I’m so grateful to have it. It lifted me off the ground. I now have it to keep going. I have a spiritual faith that he’s still with us.”
Ashley McWilliams, Community Development Manager at Brain Tumour Research, said: “Jay’s parting gift to his family speaks volumes about his character.
“His journal is a testament to his love and resilience, and we are deeply grateful to Dawn and her family for their incredible support. Their fundraising is a beacon of hope for over 16,000 people who are diagnosed with a brain tumour every year, helping us get closer to finding a cure.”
To support The Jay Walk tribute, visit: jaykennedy.muchloved.com/Fundraising
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