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Kirsty – A letter to myself

A letter to myself


It’s the 7th of May 2024, you’re receiving this letter from me, it’s February 2025.

You’ve just been told Oliver has a brain tumour. I need you to sit with me and read.

I’m writing this to you, for your heart. Not to discredit the immense support you have around you, those going through this with you and those who will help you through this… but these words, are for you.

Oliver Kirsty and their dog pre surget
on the hospital bed in the childrens ward

I am so proud of you and I know you are sat there feeling like you should have caught this sooner, wondering what signs you missed and feeling like you’ve let Oliver down some how. Oliver has been seen, diagnosed and is safe. You persevered today and didn’t let the doctors turn him away. He can now receive the help he needs, because you knew something was wrong. 

You did right by him. 

People are going to remind you of this.

It’s taken me a while to hear it and believe it and that’s okay.

I know you’re scared right now. 

I need you to sit with that feeling, and know that it’s because you love him so much. You’re going to do everything you can to fight for him, you’re stronger than you feel.

 His life has been taken out of your hands and I understand as his mum, you want to protect him.

 Lean on those around you, your feelings need to be heard. You don’t need to protect others from how you feel.

Kirsty huggin Oliver before brain cancer surgery
DIPG tumours
Tomos giving Oliver a hug ahead of brain tumour surgery

I know you’re scared to take him to theatre on Thursday, he’s already asked you to sing his bed time song to him. He understands he needs to go to sleep. You can and will do this for him, it’s going to be hard, but you hold yourself together so bravely. Look for the nurse specialist in royal blue, she will hold you when he falls asleep in your arms, it’s okay to cry with her.

Oliver’s surgery will be 8 hours long, I need you to keep busy, wear some comfortable clothes, make sure you eat and drink something hot. Colouring is a good idea, Oliver has some paw patrol posters, pick one of those with him Wednesday night, so he knows where you are and what you’re doing while he’s in surgery. Listen to your gut instincts always, you haven’t been wrong yet.

It’s okay to be open with Tomos about what is going on with Oliver, I know this worries you. I know he’s only little 6 years old right now, but he is so strong and brave. He is more understanding than I realised, you’re going to need his hugs and bouncy energy to keep you going. You’re an amazing mummy to him too. You have good open conversations with him and he heals a part of your heart every day. 

Mum guilt is going to hit hard as you split yourself in two, but try not to talk negatively to yourself.

Please know that when Oliver is scared and hits out at you, or gets angry at you, it’s because he feels safe with you and he knows your love is unconditional.

Oliver has grade 4 medulloblastoma

I need you to hear that your boys know you love them and you’re doing an amazing job. Listen to others when they tell you this.

Oliver has grade 4 medulloblastoma.

This is a malignant brain tumour.

Oliver has cancer.

I understand this is the most heart-breaking thing you could hear, and you’re wondering how your heart will survive this. I’m still scared now and that’s okay. You will feel joy again, I promise. You will hear him laugh again, you will see him learn to walk again, you will see him learn to eat and talk again and you will be so intensely proud of every single moment he fights through.

He is going to get through this because you’re his mum. You’re right by his side.

Tomos and Oliver in hospital

You’re going to be scared to watch him lose his hair, to lose what you know your little Oliver to be. You were never meant to see your little boy’s body endure the treatments to come.

It’s going to be hard to sign those consent form for treatment, but please understand this is out of your hands. Trust his team.

You’re scared you’ll lose Oliver.

I’ll let you know if that fear ever eases, I’m not entirely sure it will.

I guess it feels as if every day is borrowed time. Don’t forget to remain grateful, it will be hard not to fall amongst the grief.

It’s okay to grieve the days pre diagnosis, but know he is here with me now. He is safe, he is loved and he is okay.

And, so are you, I promise.

A lot is going to happen between where you are and where I am right now. I won’t overwhelm you with the details, maybe I can write to you again. Telling you what I know you need to hear in this moment, has helped heal a part of me today.

Thank you for sitting with me to read.

 

laying in the hospital bed with Oliver
Oliver in his wheelchair
Kirsty Oliver and Tomos out for a walk
Tomos pushing Olivers wheelchair down a hospital corridor
Tomos mimicking Olivers eye patch following surgery
Oliver with no hair and Tomos playing on their ipads on a hospital bed in the chidlrens ward
cuddly toys and the boys
Kirsty and a smiling Oliver before treatment
the dog comes to visit Oliver in hospital
malignant brain tumour
Oliver giving Tomos a high 5 from his childrens cancer ward hospital bed
Oliver and Tomos lying down in the back of the van
Kirsty mum of Oliver who is in a wheelchair at the park who feature in our Brain Tumours Aren't Bothered video
learning to walk again out and about with a horse
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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
Sam was Headteacher at a school where Alfie Hutchinson died from an ependymoma brain tumour, at the age of 10. After becoming close with Alfie’s family Sam found OSCAR’s and reached out to the charity to help support the family, staff, children and local community. 
 
Sam understands the immediate and long term effects on a community when losing a child to a brain tumour. 
 
‘After seeing first hand the amazing work that OSCAR’s do, there was no doubt in my mind that I wanted to be part of the team. I’d like to help raise awareness in educational settings, for teachers and for parents – to empower them to seek early detection/diagnosis. Phil once said to me, ‘You never expect to become part of the brain tumour community, then all of a sudden you are.’ What an inspiring and powerful community it is.”

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.