Keep Olivia Smiling

31/03/2026

Been a bit of a tough few months over here. I haven't posted much lately as frankly, it feels like I am just repeating myself after 9 whole years of the same challenges. I often wonder if it's just becoming 'boring' for want of a better word. Yep, we still have a brain tumour, and we are still blind!

Big check up tomorrow at our second home

Our Olivia is struggling with fatigue and it is time we did something about it. We have a few meetings in the pipeline, an MOT planned plus a multidisciplinary team meeting to hopefully get a more holistic view of what is a very complex medical condition.

Yes, granted the treatment we are on is never as awful as chemotherapy, but sometimes it is good to remind ourselves that this is not actually a normal way of life, (albeit it is our normal!) and to give ourselves some compassion when we are struggling. I kind of have lost my sparkle for want of a better phrase.

Here is a photo of Olivia smiling because she is the reason we keep on keeping on and huge thanks to people who keep us smiling along the way!

carer

Accessibility photo description for and . Olivia with Captain Fantastic aka Martin, smiling widely towards the microphone at an Easter party hosted by The Chartwell Children's Cancer Trust providing us with some entertainment bubbles, laughter and dancing!

04/03/2026

Olivia's Daddy is running the London Marathon again for Children with Cancer UK. This month is especially close to our hearts with Olivia having a brain tumour. Any donations/ sharing will be greatly appreciated. We would never want any families to go through what we have and fundraising is key to help in finding a cure

https://2026tcslondonmarathon.enthuse.com/pf/matthew-taylor-35adc?utm_source=enthuse&utm_medium=email&utm_campaign=f-LMnurture&utm_content=LMpageURL&utm_campaign=website&utm_medium=email&utm_source=enthuse

26/02/2026

You know what is crazy?

Children with Cancer UK created a fundraising campaign asking for donations for new treatments and Olivia is one of the children who helped to promote the campaign with a radio advert etc and there are people ARGUING on the post, on a photo of her, accusing them of 'using' Olivia, arguing about God, slagging off the charity, using it as a political platform to argue about why we should not donate to foreign charities etc.

You name it, they're doing it.

I hate the internet sometimes. I do it because I want to continue to raise awareness but it is not an easy place to be.

I just want to thank you all for being so lovely and kind and supportive on our journey 💕💕💕💕💕💕💕💕💕

At the heart of it, are children like Olivia and parents like us who just want support and love.

05/02/2026

Yesterday was World Cancer Day.. Cancer has affected so many people and causes devastation on families. Olivia's Daddy is once again running the London Marathon (among other things) for Children with Cancer UK to help the many kids who have to go through this horrible journey. A simple donation, sharing this post will mean so much! Thank you. Even though we have one day highlighting Cancer, it affects people everyday.

In April 2026, I will lace up my running shoes, pin on my race bib, and run 26.2 miles through London. I am running the 2026 TCS London Marathon to raise vital funds for Children with Cancer UK, a cha

08/01/2026

07/01/2026

ALWAYS in hospital for her nurses!

This is our Mummy Daughter song 💕

sings this with her daughter Willow.

Accessibility video description for other blind and visually impaired: A small snippet of Olivia standing in her hospital ward at wearing a grey casual outfit, her jumper is K-Pop demon Hunters themed. She is holding Corry Bear the 2nd and a teddy bag. At the end of the video you van just see one of the nurses clapping as the video pans to the left. Behind her is a photo wall of some of the babies treated here alongside photos of the nurses.

07/01/2026

Exactly NINE years of this and still smiling!

My hero.

05/01/2026

Olivia's Grandad!

01/01/2026

Started to wear this lanyard out and about on days when we don't have the

I have mixed feelings about walking around with a 'label' when people presume so many things about us already by having a disability, however, it also helps the public understand when we may need adjustments eg if we need a little more space or more time to walk up steps.

People are always huffing and puffing at us because they dont understand why we need more time and I just wish people would be kinder! I could write a book about the ignorant comments people have made to us over the years.

Disability has a great way of filtering out people you do not want to be around and we get to see the judgmental side of people unfortunately too often. I have coined a saying recently 'When someone shows you who they are, believe them the first time'.

I don't say this very often but having a child with a disability is very isolating and sometimes I grieve my old friendships, other times I'm so glad I saw people's true colours before I wasted any more time on them.

P.S I have not stopped describing my photos, the settings have my alt text read out to them for those with screenreaders, but, yes that is a headband on top of a hat 😃, each to their own.

30/12/2025

This year Olivia has achieved SO much and all whilst on active treatment for a brain tumour.

Whilst we would take this treatment (targeted inhibitors) ANY day over chemotherapy it still brings side effects, some obvious but some hidden.

Every single day, twice a day, Olivia has to fast to take her medicine, which she hates.

In 2025, Olivia has voiced a radio advert for charity, acted in an episode of Eastenders, been interviewed by This Morning and excelled at school. She is currently taking her Grade 4 singing exam and we could not be more proud.

I love how every single day of her life people underestimate her and every time she smashes their expectations out of the water proving that she can do absolutely anything anyone else can do!

In a few days we have both her diagnosis anniversary (worst day of the year and in mouldy January!) and an MRI brain scan so it's going to be a tough week ahead but we continue to stay positive for good results and pray for a stable 2026.

28/12/2025

Throwback to having a Royal-Tea exactly 2 years ago in Windsor Castle!!

Just the craziest and most surreal memory!!

🏰 ☕️

27/09/2025

Olivia is doing absolutely amazing but it feels important to say that we still have a lot of challenges.

At Olivia's last appointment we were informed that the drugs she is on currently (which have returned a quality of life to us) are not promised to be continued into the future. It is a complex situation between drug companies and the NHS that I won't try to explain here but I have become accustomed to the fact that Olivia is having shrinkage and stability on this treatment after years and years of sickness and horrendous side effects on I just don't even want to think about the fact that she may not always have access to it.

I do not know what the future holds but I do know we still have a huge battle on our hands. The only way we have got through the last 8 years is by taking one step and hurdle at a time and not thinking too far ahead but some days it weighs heavier then others.

For anyone reading who is in this world - we are in the UK and the drugs are . Olivia's tumour is an optic nerve glioma BRAF mutation.