Bailey-Jay’s Battle

14/07/2025

Bailey had an appointment with his Neurologist today 🧠

She recommended increasing Bailey's dose of Carbamazepine, to hopefully improve the absent seizures and his ability to concentrate, as his nursery has flagged this up as an issue in recent months. Hopefully the increase of medication helps improve those ailments, but doesn't come with any/too many side effects alongside 🤞

10/06/2025

🧠 Appointment with his Oncologist and a Neurology consultant today 🧠

Bailey's case was discussed in yesterday's MDT meeting. They compared his first scans to his most recent. Although there has been no growth of his tumour, they noticed a change in the ratio of Cystic/Solid components of the tumour - The Cystic part has become larger. His Oncologist reiterated that Bailey's case is very unusual and that she couldn't tell us why the change or what it means, and that at this time, the current plan of active monitoring is what she recommends.

He will continue to be scanned every 6 months, unless there is a decline in symtoms.

He was a super brave boy again today and earnt himself a minion balloon & a pokemon toy from the gift shop 💛

After being in a bubble for 2 years, we are leaving Cardiff feeling somewhat deflated and perplexed about the information we've recieved today 😥 but still trying to remain positive, as Bailey continues to flourish, like the little Hero that he is 🦸‍♂️

13/04/2025

‼️ Benign doesn't mean fine ‼️

Why ‘Benign’ is harming the brain tumour community...

At The Beyond Recovery Project, we work with many people living with the effects of brain tumours that are labelled benign. But we need to call out this term for what it is: misleading and damaging.

Just because a brain tumour isn’t cancerous doesn’t mean it isn’t serious. The label “benign” implies harmlessness—but inside the brain, any tumour can cause significant and lasting harm. From cognitive changes to mobility issues, fatigue to emotional trauma, the impact is often lifelong - and potentially life-threatening.

This label contributes to a lack of follow-up care, inadequate emotional support, and shockingly low funding for research and rehabilitation. People are being discharged from hospitals with the message that they’re “fine,” when in reality, they’re left to rebuild their lives with little or no guidance.

We believe it’s time to stop using the word benign in this context. It doesn’t reflect the reality of what people go through, and it actively contributes to them being overlooked.

Let’s change the language. Let’s change the outcomes.

www.change.org/BenignIsNotFine

10/04/2025

I couldn't think of a more positive way to kick start our Easter holidays, than hearing that Bailey's recent MRI results are STABLE 🥳🥲👏😁

I can't even begin to explain just how relieved and grateful we feel, for every stable scan 🙏🏼

Keep fighting our brave boy, you've got this 🦸‍♂️💪🏼🩵

06/04/2025

🎉 BAILEY-JAY TURNS FOUR 🎉

He had a fantastic day yesterday, celebrating his 4th birthday at Drayton Manor theme park/Thomasland, with his family! 🚂🎁🎈🎉🐒🎢🎠🎡🦖

It was 2 years ago today, that Bailey was diagnosed with a Brain tumour. A day we will never forget 💔 but we are so thankful to still be having stable scans, and grateful for every day that we're able to spend together, as a family, out of hospital 🙏 long may it continue!!

03/04/2025

Another MRI under GA for our brave boy today. They gave him the anesthetic via canula this time, as opposed to the gas mask, which was a lot less stressful for him 😌
He recovered well, enjoyed some biscuits in bed, then spent a small fortune in the Noah's Ark shop on the way out of the hospital 😄
As usual, it's a few weeks of waiting on results. Hoping & praying he remains stable 🙏🩵

04/02/2025

Today is World Cancer Day 🎗🩶

17/01/2025

Bailey had an appointment with his Oncologist on rocket ward today🎗🚀

He was such a well behaved & brave boy! He got to stick his drawing on the wall & chose another balloon 🎈 (a monster truck this time).

13/01/2025

Bailey had an appointment with his Neurologist today 🧠🩺💊

She's happy with his progress on Carbamazepine. There was a discussion about increasing his dosage, due to him gaining weight, but we decided to hold off for now, as he's adjusted well to his current dose, and is still only having absent seizures - no focal seizures 👍

He's chuffed with the avocado balloon that he chose today 🎈🥑😆

11/01/2025

Unfortunately, it took 6 months of GP appointments, pediatric referals and pleading to get Bailey's diagnosis! It terrifies me to think how crucial that amount of time could have been with a brain tumour diagnosis 😰 Always trust your gut, no one knows your child like you do!

*Image credit to MurphysSketches

01/01/2025

After a year of stable scans, Bailey-Jay is going into 2025 like... 😆

Forever grateful for every day that he's his silly, happy, healthy self 🫶

We hope 2025 is a year of good health and happiness for you all ❤️

19/10/2024

ANOTHER STABLE SCAN 🤩🥳🎉

We are so grateful for every stable scan he has 🙏🥲 the longer we can avoid the dreaded cranitomy surgery, the more time his brain has to develop!

You've got this Bailey-Jay 👏🩵