In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Jason Willis, a dad-of-two from Greater Manchester, was diagnosed with a glioblastoma multiforme (GBM) in January 2019. Following brain surgery, six weeks of radiotherapy and a further six months of chemotherapy, in January 2020, Jason received the heartbreaking news that his aggressive tumour had continued to grow. Jason was cared for at home by his wife Jen throughout the COVID-19 pandemic. He died on 26 October 2020, aged 44, leaving behind Jen and their two young daughters.
Jason’s widow Jen tells his story…
Jason and I met at high school in Chorlton-cum-Hardy in Manchester. We started dating when we were 15. We had our first kiss in Chorlton Park and years later, in 2009, that’s where Jason proposed to me. We both went to university in Manchester; we wanted to stay close to one another. I studied Law at Manchester Metropolitan University and Jason read Physics at University of Manchester Institute of Science and Technology (UMIST). After we graduated, Jason landed a job at Bookham Technology in Oxford. From there, he moved to Chelmsford in Essex to take up an exciting role working on satellite imaging devices with a company called E2V. When Jason was in Oxford, I stayed in Manchester and we would only see each other at weekends. It was tough but our relationship survived the long distance and in June 2011, we married at Nunsmere Hall in Northwich. Sophie arrived in 2012 and five years later, in 2017, I gave birth to our second daughter, Harriet.
Jason was passionate about reading and about the sciences, particularly physics, passions which he was keen to share with the girls from a young age. He enjoyed explaining how the world worked to Sophie; singing hilarious songs, doodling equations for fun and just talking for hours. He was the epitome of irony, reading quantum physics and enjoying computer programming on the one hand, while childishly joking about and being silly and cheeky on the other. We miss him so much.
“Harriet turned one in November 2018 and around that time and over the Christmas period, I noticed that Jason wasn’t himself.”
He was more tired than usual but we put it down to working alongside being a parent of two lively young girls. Life was good but it was busy. Then, completely out-of-the-blue, in early January 2019, Jason suffered a grand mal seizure at home. Luckily, it was night-time, so the girls were in bed. I wasn’t sure at first whether he’d had a stroke or if it was something else. It was really frightening. I called an ambulance and a neighbour came over to look after the kids. The ambulance came and rushed Jason into Wythenshawe Hospital A&E.
They did a CT scan and found a brain tumour. The first thing I remember saying was: ‘is it benign?’. They wouldn’t be able to give me an answer until after they’d operated and carried out a biopsy. Jason spent a week in intensive care and was then moved onto the high dependency unit (HDU). They did an MRI scan and Jason was referred to Salford Royal. We met Jason’s surgeon, Mr David Coope, who said he’d need to take out what was there and find out what it was. He came home before he was due back at Salford for his surgery but unfortunately suffered another seizure and spent another 20 hours back in A&E. Eventually, a bed was found for him at Salford and he was admitted ahead of his operation.
Jason’s craniotomy was on 24 January 2019, my sister’s birthday. It took much longer than I was expecting. Jason had been taken to pre-op at around 9am. I remember it was midnight and I was still pacing the corridors, waiting for news. It was such a relief when Mr Coope came out and said it’d gone to plan. When we got the histology report back, however, our worst fears were confirmed. Jason was diagnosed with a glioblastoma multiforme (GBM), an aggressive and incurable tumour, carrying with it a dire prognosis. Sadly, this was the news I was expecting. When Jason came home from Wythenshawe, they’d written ‘GBM’ in his medical discharge notes and I knew what that meant. While I’d already started acclimatising to the reality of this diagnosis, Jason was bravely trying to take it all in.
“Mr Coope and his team were outstanding; they were honest and frank but amazingly compassionate at the same time.”
The next stage of Jason’s treatment was a six-week course of radiotherapy with concurrent chemotherapy at The Christie Hospital in Withington. It was a difficult time, as Jason had forfeited his driving licence and so getting him to and from the hospital and getting the girls where they needed to be required a lot of juggling but we managed it. Jason really struggled with the radiotherapy. It was brutal. He was withdrawn and so dreadfully ill from it. He had a month’s break before starting on a six-month course of stronger Temozolomide (TMZ). In spite of the side effects, he went back to work on a phased return at the end of July, while he was still on chemo. He worked as a customer insight analyst for Your Housing Group in Warrington, Cheshire – where he’d worked for 10 years or so. His role involved dealing with a lot of data and numbers and although his communication wasn’t as good as before his surgery, he managed to carry on making an impact in his job. He was a much-liked and well-respected colleague. Jason’s co-workers were so supportive during his treatment, his phased return to work and his subsequent decline. I will not forget how kind they were.
“I was determined to stay positive and proactive in the face of Jason’s stark prognosis. I did a lot of research and decided to embark upon the ketogenic diet .”
We did this together and I was really strict about it, weighing everything. Jason found it tough at first. He was a numbers man and would look at all the statistics and data surrounding his disease, concluding that his fate was inevitable. I, on the other hand, was willing to try anything, clinging on to hope that something might just make a difference.
Following Jason’s treatment, we were able to enjoy a period of a few months, when he was relatively well. We had some family holidays in the UK, including a couple of trips to Anglesey in North Wales and tried to keep things as normal as possible. But all of this was against a backdrop of fear. Jason was being scanned every few months and in December 2019, his consultant spotted something on the images, that was either regrowth, or some residual scar tissue from his surgery. They decided to ‘watch and wait’. We had a nice family Christmas together; I remember getting us all matching pyjamas to wear. We spent New Year’s Eve with Jason’s best man Carlus and his family. We prepared a keto-friendly dinner together, did an early countdown to midnight so the kids could join in, and tried to make it as festive as possible.
A few weeks later it was February half term and we had booked to go to Malvern in Worcestershire. Just before we were due to go, Jason’s clinician from The Christie got in touch and said the latest scan images showed definite growth. We really weren’t expecting it. He’d had no new symptoms and no more seizures. The plan was to put Jason on PCV triple therapy; a combination of procarbazine, CCNU (lomustine) and vincristine. Procarbazine and lomustine would be given in capsule form, whilst vincristine would be administered via a drip during a hospital appointment.
We went ahead with our break to Malvern and Jason started on the new treatment regime when we returned. Unfortunately, he was dreadfully ill after the first lot of PCV. By now, it was spring 2020 and the UK had gone into lockdown, due to the outbreak of COVID-19. Jason’s mobility began to be affected and his communication started to go too. Eventually, he could no longer walk or talk at all. Jason was offered a bed at The Christie but because of COVID, he wouldn’t have been allowed any visitors. Not even me. If he were to go into a hospice, I would’ve been able to visit sometimes but they wouldn’t allow children in. We made the decision together that Jason should be at home. We had always planned that Jason would be in our home but what we didn’t expect, was how bad the pandemic would get and that it would remove all support networks we would have relied on.
“It was an impossible situation and very lonely. I wanted to be his wife but I became his carer. It was utterly heart-breaking.”
A hospital bed was installed at home. Our girls would hold his hand, give him cuddles and watch TV with him. I stopped doing the keto diet. Jason enjoyed treats, such as ice cream. I didn’t see the point in carrying on with it in the end. Jason’s best friend Carlus would come every day to help out. I quite simply could not have done it without support from Carlus. Jason could not have had a more loyal, supportive friend. We had some awesome friends, who would come to watch the girls from a safe distance in the garden. We had friends build play equipment for them and others came to do some gardening. Shopping and little gifts for the children were dropped off on the step, all wiped down. Because of Jason’s vulnerability, we were shielding as a family.
I cared for Jason at home for eight months in total during lockdown. Towards the end, he stopped being able to eat or drink. There were times when we thought we were losing him but he would muster the strength to hang on. One of the loveliest district nurses, called Sally, asked if he was strong. I said: ‘yes’. Harriet’s third birthday was on 1 November 2020 and towards the end of October, as it was approaching, I was worried Jason was ready to go but was holding on for that day. I recorded his voice singing to Harriet from his phone and uploaded it to a snow leopard ‘Build a Bear’ I’d bought for her birthday. On 26 October, I put the soft toy on his bed and showed it to him. I pressed the paw and we could hear his voice singing to Harriet. I think he could still hear. Our neighbour got a cake and I put a candle in it. We presented the cake, sang ‘Happy Birthday’ and gave Harriet her present.
“That night, once the girls had gone to bed, I said: ‘you’ve done it. You made her birthday’. I also told him we would be OK. That it would all be OK. Later that night he slipped away peacefully, whilst I held his hand.”
We had Jason’s memorial service a few days after Harriet’s birthday. I didn’t want the dates to be too close to one another. We chose somewhere really natural and pretty for his burial. There are lots of trees there and it’s green. There are sheep and rabbits and it’s somewhere I knew the girls would enjoying going to visit and to play for years to come. At the service, I read the Peppa Pig book, ‘My Daddy’. Sophie wrote a song, which I read. We tried to keep it as a celebration of his wonderful life. We all wore green; his favourite colour. We had 30 attendees including some of Jason’s work friends. Carlus read, ‘Why you want a physicist at your funeral.’ I think this was fitting and know he would have approved. Other close friends paid tribute through physics readings and recalling funny times they had with Jason over the years.
After losing Jason, I started to connect with other people in the brain tumour community on Twitter. I found it really comforting to form online friendships with lovely, supportive people, who’ve been affected by this terrible disease. It was through my ‘tweeting’ that I came across Brain Tumour Research and their flagship fundraising event, Wear A Hat Day, which happens every March. I decided the campaign would be a good thing to get behind, in memory of Jason. So, I set up a JustGiving page and shared it with family, friends and former colleagues of Jason’s, encouraging them to get involved by sharing a photo of themselves wearing a silly hat and making a donation. The girls and I wore our own funny hats and some of Jason’s. I remember Jason wearing the Mad Hatter’s hat for our engagement photoshoot. He was so up for anything!
“I was inundated with lovely messages; people sharing their own memories of Jason and sending their heartfelt condolences. I was astonished that we managed to raise more than £3,000 for the charity.”
In April, three of Jason’s friends, Alan, Matt and Mark, did a running / walking / climbing challenge, to continue fundraising for Brain Tumour Research. It was a nod to the fact that Jason loved spending time outdoors. As a team, they ran 15 miles, cycled 50 miles and climbed 1.2 miles – raising more than £1,500.
Our fundraising efforts will continue next month when Sophie, who was a real ‘Daddy’s girl’, will take on a ‘44 / Forty-Four challenge’ in memory of her daddy. Jason was only 44 when he passed away. Throughout the month of June, Sophie will be completing 44 physical, mental, creative and wellbeing challenges and she’ll be doing 44 repetitions (or seconds, minutes etc.) of each one. The challenges have been designed to reflect some of the things Jason liked; physics, maths, music, pool, beatboxing, laughing and kindness. For example, she’ll be doing 44 minutes of stargazing, singing 44 seconds of a track by the UK soul group Loose Ends and telling 44 jokes. We’ve set up another JustGiving page for donations and we’re both thrilled to have raised nearly £1,000 before her challenge has got underway.
“Jason used his brain to the fullest. Every. Single. Day. It makes such a devastating illness all the more unfair.”
Since national cancer spend records began in 2002, £680 million has been invested in breast cancer, yet only £96 million in brain tumours – that’s a difference of £35 million a year over 17 years. In other words, just 1% of the national spend on cancer research has been allocated to brain cancer. Yet, more children and adults under the age of 40 die from this cancer more than any other. It is just not acceptable that there have been no significant new treatment options for brain cancer for decades.
It is important we continue to keep Jason’s legacy alive by both highlighting the importance of petitioning the government to raise funding into brain tumour research and fundraising to enable vital research to continue. I am championing the fight against brain tumours and committing to raising thousands of pounds for Brain Tumour Research, by setting up a Fundraising Group in his name. The group, which will come under the Brain Tumour Research umbrella, will be called The Jason Willis Foundation and will help the charity build a network of experts in sustainable research at dedicated Centres of Excellence and supporting them as they influence the Government and larger cancer charities to invest more nationally.
“Engaging in fundraising and campaigning activity with Brain Tumour Research is emotional, as it is a constant reminder of how much I miss Jason, but it so important to me as well.”
I know he would be delighted and humbled by what we’re doing and by all the support we’ve had. Jason was hugely intelligent, meticulous and thoughtful. I vow to continue fundraising in his honour and in honour of all the other husbands, dads and families everywhere, who’ve been touched by this horrifc disease. Let’s keep going and find better treatment options and a cure for brain tumours.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure.