Keep Olivia Smiling

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!!

🏰 ☕️

16/12/2025

Thank you for thinking of us and sending us some amazing 🎁

It means so much more then you ever know that someone is out there thinking of us always!

Olivia had a hospital stay this week due to having the dreaded but is thankfully doing super well battling it!

Anyone that understands world will know that bugs can be life threatening to those with reduced immunity. Praying her temperature doesn't spike again and we can be out of the woods for xmas 🙏 luckily Olivia's neutrophils are pretty high this week 🙏

13/12/2025

Unfortunately, the 'big' eye appointment was just as frustrating as ever! I was alone at this appointment and I wanted to cry the entire way through so I wish I hadn't gone there alone in hindsight because I didn't want Olivia to know how devastated I was.

'Improvements cannot be quantifed' but I know my girl best and I know we have developments. The most I could get when really pushing them was to say 'small but subtle improvement'.

There was some other good news though. The treatment Olivia is on can damage her retina (on top of everything else!) but so far, no signs of this so I am taking this as a positive appointment nonetheless.

08/12/2025

Olivia's amazing consultant!

We are thrilled to announce The Royal Marsden, as part of the South London Paediatric Neuro-Oncology Network, has been designated a Tessa Jowell Centre of Excellence for Children, highlighting the strength of its services for children with a brain tumour.

The South London Paediatric Neuro-Oncology Network is one of four UK paediatric neuro-oncology centres to be awarded the designation by the Tessa Jowell Brain Cancer Mission (TJBCM).

For the past 18 months the centre’s neuro-oncology team has implemented innovative new solutions, showing an exceptional commitment to service development, bringing together a wide number of specialties to deliver impactful changes.

Dr Fernando Carceller, Consultant in Paediatric and Adolescent Neuro-Oncology at The Royal Marsden, said:
“Finding cures and saving lives demands the highest standards of excellence. At The Royal Marsden, we know that achieving and sustaining this excellence requires constant motivation, meticulous planning and a relentless drive to find better, kinder ways of doing things. For patients and their families, a diagnosis of a brain or spinal tumour is a devastating life event, and we understand the immense challenges they face. The management of these tumours is highly complex, but through our specialised network of expert neuro-oncology centres, our team delivers the most compassionate, advanced and collaborative care for children, adolescents and young adults at every stage.”

Read more: https://brnw.ch/21wY4T0

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.