This month I became someone else

I have never been an over-protective mum. I think having four boys I would absolutely run myself to the ground if I had to protect them from every danger the world around them represents but that being said, since Oscar died it is probably natural for me to be a little more cautious when they are ill.

Logic, in my opinion, should still prevail… but now it doesn’t. Milo was behaving differently last week and I acted like a first time overprotective mum – one of those I used to laugh at even when I was a first time mum. It’s just a virus, right? He is lethargic, has had some cold sweats, a little fever here and there and really just wants to be in my arms or sleeping. Apart from when his dad or his brothers are here, then he perks up, at least for a while, and plays and laughs before getting tired again.

So the question I asked myself over and over again – virus, hot weather, teething or nothing – he is a baby after all.  Or do I go to that dark place and consider a brain tumour? There, I said it. Because that is where my mind went – I looked on the HeadSmart card to check what the symptoms for brain tumours are in babies.  I watched him during his sleep to see if I could magically get a sign from him that his head hurts, I checked his eye co-ordination, tested to see if can he still stand. And yes he can stand perfectly fine now and with all the practice from my little tests, he can even stand on his own for a while (something good is coming out of my overprotectiveness!).

I know he is most likely fine and just doing what babies do, but I have become that mum who frightens herself into thinking the worst.  This is not helped by the fact that Milo can not, of course, tell me why he is a little out of sorts. It is not helped by my current terrible mood and the fact that this month missing Oscar is hitting me at full force at the moment either. I cannot get away from the fact that I once went to the doctors thinking my son was ill, never imagining being sat in a little room at a hospital and told by three doctors that my son had a brain tumour and an ambulance was now waiting to take him to a different hospital and that all of our lives would be forever changed…..forever saddened, forever traumatised, forever knowing life could change in an instant and we would be powerless to do something about it then.

Normality in the form of everyday family life with an ill baby has all of the sudden turned me into a crying wreck. I need to acknowledge it and keep moving. Let’s look at the positives; my eldest turned 13 and we made his weekend a wonderful birthday party with family coming from all over. My other son will turn 7 soon and we will celebrate that in style. We will go on holiday, we will watch Euro 2016 and Wimbledon with our friends and cheer at the TV.

I am hugely excited by having met Sarah Hewson, our new patron for the charity, and she has confirmed she will be at our ball in September. We met for lunch and she is one of these people who I was just instantly attracted to. She is a mother of two and understands the fear I go through. She understands the need for me to be part of changing the future of paediatric brain tumour treatments.

As a mother who now worries just that little bit more than I used to, I push through it by the strength the positives in my life bring me. The charity, other mums and dads, my children and my wonderful husband who secretly worries just as much as me!

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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.