Sonny’s Story LCH Awareness

Sonny’s Story LCH Awareness Strong like Sonny 💛
From being unheard to finally getting answers- LCH awareness

08/09/2026

💙 CHEMO NUMBER 23! 💙

23 chemos… honestly, how are we even at number 23 already?! 😭

Sonny was absolutely brilliant today. He is getting so good with having his port accessed now and today there wasn’t one single tear! 🥹💙
He’s come such a long way from those first few times when it was all so scary and unfamiliar for him.

As always, he made himself right at home on the ward riding around on the little cars 🚗, having plenty of fun and, of course, spending lots of time in his favourite place… the play kitchen! 🍳😂

It’s so strange knowing that we now only have 2 more chemotherapy sessions left. Just TWO. And then our brave boy will get to ring that bell. 🔔😭💙 I honestly don’t think we’ll ever be able to put into words what that moment will mean to us.

And although ringing that bell will be such a huge milestone for Sonny, it doesn’t mean the journey suddenly ends. There will still be scans, appointments, blood tests and the worry that comes with LCH. The bell will simply mark the end of this part of his treatment — a moment to celebrate just how far he has come, while knowing there is still a road ahead of us. But for now, we’ll be counting down those final 2 chemos and looking forward to hearing that bell ring. 🔔💙

The play specialist asked me today whether I feel like these past 11 months have flown by or gone slowly, and honestly, it’s such a strange mix of both.

Part of me feels like it was only yesterday that we were sitting there hearing the words LCH and trying to understand what was happening to our little boy. That day feels so close, and I can remember so much of it like it was yesterday.

But then, when I think about everything that has happened since, the hospital stays, scans, blood tests, procedures, appointments and 23 rounds of chemotherapy it somehow feels like LCH has been part of our lives forever.

11 months of our little boy being so incredibly brave. 11 months of watching him go through things no child should ever have to go through, yet somehow he continues to smile, play, laugh and amaze us every single day. 🥹💙

We are so unbelievably proud of you, Sonny. You have no idea just how strong you are.

2 more, little man. Just 2 more. 🥹💙
We’re getting closer. 🔔💪

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04/09/2026

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04/09/2026

So true......



🎗️💛 SEPTEMBER — A MONTH THAT MEANS SO MUCH TO US 💛🎗️September is Childhood Cancer Awareness Month, but it is also Histio...
01/09/2026

🎗️💛 SEPTEMBER — A MONTH THAT MEANS SO MUCH TO US 💛🎗️

September is Childhood Cancer Awareness Month, but it is also Histiocytosis Awareness Month — making this month particularly important to our family and so many others living through something most people have never even heard of.

Before Sonny's diagnosis, I had never heard of Langerhans Cell Histiocytosis (LCH). I certainly never imagined that it would become such a huge part of our lives.

LCH is rare, and because so few people know about it, awareness really does matter. Sonny's journey to diagnosis showed us just how important it is for people to recognise the signs, listen to parents and understand that rare doesn't mean impossible.

For months, I knew something wasn't right with my baby. We saw the GP 22 times for his rash, ear infections or both, as well as speaking to health visitors, midwives and the hospital. We had 12 different diagnoses and eventually, Sonny was diagnosed with LCH and our entire world changed.

So this September, we want to help put LCH on people's radar. 💛

We want people to know its name.
We want parents to feel listened to.
We want more awareness.
And most importantly, we want other children to get the answers they need.

For Sonny, this isn't just an awareness month.

This is his life. His fight. His story. 💙

Please share Sonny's story this month. You never know who might see it and recognise something in their own child.

🎗️ Childhood Cancer Awareness Month
💛 Histiocytosis Awareness Month

❤️ Our little trip to Mablethorpe ❤️We’ve just come home from the most amazing few days away at Ben's Den, an incredible...
25/08/2026

❤️ Our little trip to Mablethorpe ❤️

We’ve just come home from the most amazing few days away at Ben's Den, an incredible charity that gives children and families affected by cancer the chance to have a free holiday and, most importantly, make precious memories together.

I honestly can’t thank Ben’s Den enough. We have had to cancel this trip more times than I can count because Sonny hasn’t been well, or we’ve had issues with his line, so being able to finally get here and enjoy this time together meant more to us than I could ever put into words.

Sonny and his brothers have had the most wonderful time. Watching them laugh, play and create special memories together has been absolutely priceless. 🥹❤️

And one of my favourite moments… Sonny went swimming! 🥰 After around 10 months, seeing him back in the pool was such a huge moment for us. He definitely wasn’t impressed to begin with 😂 but it didn’t take long before he found his confidence and was enjoying himself!

Sadly, all good things have to come to an end, and when we got home we headed straight to Queen’s for Sonny’s weekly bloods… bringing us very quickly back to our reality. 🫠

But for those few days, we got to forget about hospitals, blood tests, chemo and everything else for a little while. We got to just be a family, make memories and watch our boys enjoy themselves.

Thank you, Ben’s Den, for giving us that. We will never forget it. ❤️

💙 CHEMO NUMBER 22! 💙What a full-on week we’ve had! There’s been lots of backwards and forwards to the hospital, plenty o...
18/08/2026

💙 CHEMO NUMBER 22! 💙

What a full-on week we’ve had! There’s been lots of backwards and forwards to the hospital, plenty of worry, and unfortunately another plan we had to cancel.

Last Monday, Sonny had his bloods done as usual by a toe prick. As much as toe pricks are less invasive than accessing his port, they do seem to cause us a bit of trouble because they can throw his potassium levels high. So, Monday evening we headed back to the hospital for a repeat blood test. Thankfully, those results came back really quickly and we were able to head home.

Then Tuesday morning, we got another phone call. His second blood test from Monday evening had shown that his liver function was low and we needed to come back into hospital ASAP. So, off we went again. Thankfully, those results came back quickly too, and we were able to head home once again.

On Tuesday evening, Sonny’s temperature was sitting around 37.4°C. It was absolutely roasting outside, and despite me trying my best to keep the house as cool as possible, his temperature slowly crept up. At around 2:30am, Sonny was unsettled, so I took his temperature… 38°C. 😩
So back to hospital we went early hours Wednesday morning.

We were actually meant to be going to Alton Towers that day with one of the amazing cancer charities, PASIC, but unfortunately it was yet another plan we had to cancel. 😔

After a few hours at the hospital, Sonny’s temperature came back down to normal without any medication. All of his bloods and swabs came back perfect, with no signs of infection, which was such a relief. ❤️ However, we weren’t discharged until around 2pm.

Whilst we were on the ward, I also got invited to a very exciting event happening in October! 👀🤫 I can’t say too much just yet, but it’s something I’m incredibly passionate about, and I promise more will follow very soon! 🥰✨

After all that, we had a very relaxed weekend. Just lots of chilling, taking it easy and a little bit of shopping.

Then Monday came around again, and Sonny had his bloods taken by our wonderful community nurse. A few hours later, we got that phone call…

“His potassium level is high again.” 😩

This time, the doctor agreed that we could stay at home as long as Sonny remained well. We’re all pretty certain now that those toe pricks just don’t suit Sonny, so it looks like we’re going to have to start using his port at home for his bloods. It’s not ideal, but it is what it is, and we’ll do whatever we need to do to keep him safe. 💙

And then today… CHEMO NUMBER 22! 💪🏻🎗️
Sonny was so incredibly brave, as always, and made us unbelievably proud. 🥹💙

While we celebrate every milestone Sonny reaches, I also can’t help but think about the children who sadly don’t get the chance to reach theirs. 💔 There are so many little fighters who have lost their battles with cancer, and so many parents who have had to face the unimaginable loss of their precious children. There really are no words for that kind of heartbreak.

Our thoughts are with those families, and we will never take for granted how incredibly lucky we are to still be fighting alongside our boy. ❤️

So tonight, we’re celebrating 22 chemos down and another step forward. We know how precious every single day is, and we are so incredibly proud of our brave boy. 💙🎗️

What a week Sonny has had! 💙On Thursday, Sonny went on a very special trip with his wonderful childminders and friends. ...
02/08/2026

What a week Sonny has had! 💙

On Thursday, Sonny went on a very special trip with his wonderful childminders and friends. They enjoyed a visit to Newstead Abbey and a teddy bears' picnic. 🧸🌳

I honestly can't thank them enough. Anyone who knows Sonny knows that chemo and steroid week can be incredibly tough, and he can be hard work during this time. They went fully prepared with all of his medication and everything they needed to make the day a success, and judging by the photos, that's exactly what it was. We are so grateful for the love, patience and care they showed him.

With everything going smoothly atm, we decided to grab the bull by the horns and head to the coast for the weekend. 🌊☀️

We've had such a lovely time. I won't pretend it's been easy!
Sonny has struggled to regulate his emotions, and we've had plenty of tantrums along the way. One night even ended with a 1am walk around the campsite to help settle him. But that's the reality of life during treatment.
Thankfully, my amazing sister and wonderful cousin were there to help and support us when we needed it most. ❤️

Despite the challenges, Sonny has laughed, played, made memories and had a fantastic time. These are the moments we hold onto. Treatment may take a lot from him, but it won't take away his chance to make happy memories whenever we can. 💙

ENT update 👂💛We had Sonny's ENT appointment today.I went into the appointment feeling quite assertive because Sonny has ...
14/07/2026

ENT update 👂💛

We had Sonny's ENT appointment today.

I went into the appointment feeling quite assertive because Sonny has had issues with his ears since April 2025. We were all under the impression that the chemotherapy would clear everything up, but unfortunately that hasn't been the case.

They are nowhere near as bad as they used to be and, from the outside, they actually look completely normal. However, every time a doctor looks into his ears, they've never been able to see either eardrum because both ear canals are completely full of debris.

The consultant tried to clean them out today while Sonny was awake, but unfortunately it just wasn't possible. The next step is for Sonny to have a general anaesthetic so they can properly clean both ears. While he's asleep, they'll also decide whether he needs grommets.

Because of Sonny's medical history, he's been placed on the priority waiting list, so we're hoping it will only be around 1–2 months before he can have the procedure.

It's not the update we were hoping for, but at least we have a plan and can hopefully get to the bottom of what's been causing these ongoing ear problems. Fingers crossed this is another step towards getting our happy little boy back to feeling and hearing his best. 💛

As always, thank you for all your love and support we'll keep you updated. 🤍

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