WHEN HEARTBREAK STOPS BEING ROMANTIC

I cried the other day for a solid 20 minutes. That hasn’t happened in a long time. And it was with full on sound and facial dramatics. And it was in my car at broad daylight. There is a good reason for this; I had to go to a meeting at the hospice we took Oscar to after he died. We were “lucky” that we were able to give Oscar a peaceful death at home. But afterwards we couldn’t face having him at home until the funeral. This for a multitude of reasons, one of them being that we would have to install coolers in his room (yep, death is not as romantic as you see on film), another being that the kids and us simply needed a “time-out” from the world. So, Ian and I decided we would drive him to the hospice ourselves. Ian drove, and I lay in the back of the car with our dead son holding him and making sure he was safe through the journey. We didn’t really say much on this journey, all I remember is holding Oscar and looking out the window as everything outside passed us by, feeling thankful that no one could see in and wondering what they would think they were seeing if they could. I imagine you would see a mum holding a sick child with dad driving as we had done so many other times to and from hospital – because it really is unimaginable that there we were with the unresponsive body of our 9-year-old child.

I wonder what people today saw when they saw me; a woman crying her eyes out over a heartbreak perhaps? Well, that would be true. But not your usual romantic heartbreak story because that never has and never will apply to me. Not once have I cried over a man – felt anger sometimes, betrayal, sadness but my heart breaking? No. I know that now.

The first time my heart broke was when Oscar was going through his tumour resection. I lay in a hospital bed next to Ian as the Operation took 11hrs and for the first time in my life I admitted that my heart had broken, not only had my heart broken, my whole soul and being broke with it. And after that day it just kept breaking a little bit more. It broke a little every time I saw Oscar in pain, with every new horrible experience he had to deal with, every bit of joy he missed out on and with every physical or emotional pain he had to go through; I just kept breaking. It is a pain that I cannot run from or fix and so I must walk with it. And I do. I keep myself busy working, sorting the house, the kids and seeing friends. But put me in that same car on the last journey I took my son on and I admit complete defeat and I let the pain be unbearable…for a time.

I had 8 normal fantastic years with Oscar full of joy. These years, along with the years with his brothers, were the years my heart flourished untainted by pain, my soul came to rest in the values of family and pain was something connected mostly to a physical aspect. That my child at 8-9 years old should feel a year of such pain, losing the innocence that is such a beautiful privilege of being a kid and never had the chance to recover from it all and find that the world could be ok again with our love – that is a heartbreak you never recover from.

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Rachel James

Community Fundraising Assistant
Rachel will join our team on September 1st and will be doing a wide range of tasks including promoting the charity in the local community, developing relationships with different people and organisations, and finding new fundraising opportunities. She comes from a caring background having been a teaching assistant and emotional literacy support assistant in York for many years, and previously leading a community care team. She has also done many years of work in the voluntary sector.

Matthew Taylor

Trustee

Matthew Taylor is Director of the York Health Economics Consortium at the University of York. He has been a supporter of OSCAR’s since its inception and, through his twenty years of research into the measurement of health-related quality of life, Matthew is keenly aware of the huge benefits that new treatments can bring to people living with brain tumours.

Matthew is actively involved in national-level healthcare decision making, having had former roles as the Scientific Director of the National Institute for Health and Care Excellence (NICE)’s Economic and Methodological Unit and as a committee member for NICE’s Public Health Advisory Group. He has over fifty peer-reviewed scientific publications, including a chapter in the textbook ‘The Business, Policy and Economics of Neurosurgery’.

Ryan Mathew

Clinical Trustee

Ryan Mathew is an Associate Professor at the University of Leeds and an Honorary Consultant Neurosurgeon at Leeds Teaching Hospitals.

The Hughes Family story had a big impact on Ryan. He first learnt of the charity when he became surgeon to Oscar’s dad, Ian. After a successful surgery, he continued to show great care and concern for the family when Ian became ill again and when Milo, Oscar’s brother, was diagnosed with a brain tumour. Ryan is driven to make life outcomes better for brain tumour patients and their families. His extensive work in both research and surgery is testament to that commitment.

His clinical practice covers the full spectrum of general neurosurgery with a subspecialty in brain tumours. His research focuses on advanced brain tumour models, residual therapy-resistant glioma cell populations, local therapeutic treatments and surgical technologies and devices. He peer-reviews for several journals and grant award committees and has published numerous papers.

More information on Ryan’s work

Lisa Dawson

Trustee

Lisa has been a friend of the Hughes family since 2016 and was honoured to be asked in 2022 to represent OSCAR’s PBTC as Social & Digital Trustee.  Both Lisa and her family have taken part in numerous fundraising events and are dedicated to raising awareness of paediatric brain tumours.  Lisa is a social media content creator, blogger and writer and lives in York with her husband Joe and three children, Ella, Max and Leo.

Alice Beckwith

Trustee

Alice has been involved with OSCAR’s PBTC since 2020. She passionately supports the aims of the charity and believes that if the charity can change one life for the better, then it is a success. Working in the public sector for 18 years, Alice has helped transform Adult and Children’s Social Care Services by ensuring heavy investment in preventative services. This is why the impact OSCAR’s work will have on families is at the forefront of Alice’s motivation to be involved.

As partnerships trustee, Alice is keen to involve businesses, trusts and individuals in the work OSCAR’s does and show them the role they can have in providing the base for the charity to continue to expand its projects to help children with brain tumours.

Sarah Jane Gray

Trustee/Secretary

Sarah has over 20 years of experience in the pharmaceutical and surgical sales sector and is very familiar with the importance of medical advancements for better patient outcomes. She believes research is essential for improving diagnosis, treatment and prognosis for all children with brain tumours and hopes OSCAR’s PBTC can offer much needed funding to help push the boundaries in finding better ways of curing this devastating disease. Sarah’s focus as a treasurer will ensure record-keeping and accounts meet the conditions of the statutory bodies and compliance with regulatory organisations.

Holly Dixon

Trustee

Holly is mother to George, diagnosed with an ATRT brain tumour in 2022, and works as a primary school teacher. She believes that action to support others -however small- can make a massive difference.


She brings real-life experience of what it is like for a parent navigating everyday life, the NHS, the education system, questions from people and a lively young child with different needs.

meet the oscar's team

Sam Marino

Trustee

Marie Hughes

ChAIR OF THE BOARD OF TRUSTEES

Marie founded the charity with her husband Ian, who passed away in 2020. She is the mother of four boys. Two of Marie’s sons have died from different types of brain tumours – Oscar who was 9 and Milo who was 5 years old. She is determined to help find better treatments for brain tumours so other children won’t have to go through what her own sons and her family have.

Marie is Chair of the Board of Trustees, working closely withe the team on strategy and vision. Marie lives in Copenhagen with her two other sons, Sebastian and Lucas, and works as a Risk Manager on the Danish railway.