Sonnyโ€™s Story LCH Awareness

Sonnyโ€™s Story LCH Awareness Strong like Sonny ๐Ÿ’›
From being unheard to finally getting answers- LCH awareness

What a week Sonny has had! ๐Ÿ’™On Thursday, Sonny went on a very special trip with his wonderful childminders and friends. ...
02/08/2026

What a week Sonny has had! ๐Ÿ’™

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. ๐Ÿงธ๐ŸŒณ

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. ๐ŸŒŠโ˜€๏ธ

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. โค๏ธ

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. ๐Ÿ’™

ENT update ๐Ÿ‘‚๐Ÿ’›We had Sonny's ENT appointment today.I went into the appointment feeling quite assertive because Sonny has ...
14/07/2026

ENT update ๐Ÿ‘‚๐Ÿ’›

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 1โ€“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. ๐Ÿ’›

As always, thank you for all your love and support we'll keep you updated. ๐Ÿค

A picture that speaks a thousand words... ๐Ÿ›๐Ÿ’™After months of sink baths, plastic wrap, dressing changes and worrying abou...
09/07/2026

A picture that speaks a thousand words... ๐Ÿ›๐Ÿ’™

After months of sink baths, plastic wrap, dressing changes and worrying about keeping his Hickman line dry, tonight Sonny finally got to have his first proper bath since having his port fitted.

The smile says it all.

He splashed, laughed and soaked up every single second of it. Watching him enjoy something so simple was enough to bring tears to our eyes.
It's amazing how childhood cancer changes your perspective. A bath isn't just a bath anymoreโ€”it's freedom. It's normality. It's another little piece of childhood that Sonny has finally got back.

These are the moments that remind us why we keep fighting.

Next stop... swimming. ๐Ÿ’™

I just want to say a huge thank you to my girls who have dropped everything at a moment's notice to help us with washing Sonny over the last 9 long months. It really was a two-person job, and every single one of you came to our rescue more times than I can count to make sure he was clean, comfortable and cared for. It definitely hasn't gone unnoticed, and I'll never be able to thank you enough. I appreciate each and every one of you more than you'll ever know. ๐Ÿ’™

07/07/2026

๐Ÿ’™ Chemo #20 โœ”๏ธ

Today marked chemotherapy number 20... and it also means Sonny has now been living with Langerhans Cell Histiocytosis for 271 days, 38 weeks and 5 days. For a little boy who's only 17 months old, that's an unimaginable amount of his life.

It feels strange to even talk about life after treatment because, at just 17 months old, Sonny has now spent more of his life receiving chemotherapy than living without it. That's a thought I don't think I'll ever get my head around๐Ÿ’”

Today was also the first time his port was accessed. I won't lie, I was nervous after everything that's happened over the past couple of weeks. Sonny needed a little help staying still while the nurse worked her magic, as always everyone was amazing ๐Ÿซถ
There were a couple of minutes of discomfort, but he handled it like the absolute champion he always is. โค๏ธ

Those few minutes are worth it if it means he can enjoy the simple things in life again... especially water! No more worrying about his line every time he needs a proper bath, and once he's fully healed he'll finally be able to go swimming again. ๐ŸŒŠ๐Ÿ’™

We also had Sonny's consultant review today, and it was such a positive appointment. He's really pleased with how well Sonny is doing and reassured us that choosing to have the port fitted was absolutely the right decision, especially with how far into treatment we are now.

We spent some time talking about what the next three to four months will look like and even discussed what happens after treatment. It's such a surreal conversation to have. We've become so used to hospital appointments, blood tests, chemotherapy and living life around treatment that it's hard to imagine what "normal" might look like again.

Next week Sonny has an ENT appointment, and one thing I'm determined to push for is getting his ears properly sorted. We talked today about the fact that he's still not talking very much, and we're wondering whether his hearing could be playing a part. The last time he was tested, he failed the hearing test at the lower frequencies, so it's definitely something we want investigating further.

The thing that amazes me most is that Sonny doesn't know any different. Hospital is just part of his life. We walk into day care and before I've even caught up, he's stomping off towards the playroom, ready to cause chaos. ๐Ÿ˜‚ It makes me smile every single time. To him, it's just another adventure.

As always, we're so proud of our brave little boy. Twenty rounds of chemotherapy down. Every one bringing us one step closer to the day we can finally say, 'Treatment is over.' We can't wait for that day. ๐Ÿ’™

Well... after being let down quite a few times over the past week, I didn't want to post anything until it had actually ...
02/07/2026

Well... after being let down quite a few times over the past week, I didn't want to post anything until it had actually happened...

Yesterday at 5pm we got the phone call we'd been praying to a God I don't even believe in...

"We've had a cancellation. Can you bring Sonny in tomorrow at 12pm?"

Absolutely we can!

We needed to collect a special body wash and nasal cream for Sonny before surgery, and thanks to family rallying round and running errands for us, we got everything sorted.

Even then, I didn't want to get my hopes up. This had already happened once before, only for an emergency case to come in and take the slot.

Over the past week, the anxiety of Sonny having another general anaesthetic had really started to take hold. Every delay just gave me more time to over think about everything that could go wrong.

Last night we gave Sonny his last "bath" before surgery. Something just felt different.
Normally washing his hair is a battle and he screams the house down, but this time he lay there fast asleep while he got the gentlest little head massage. โ™ฅ๏ธ
Watching him happily splash around in the tiny amount of water he's allowed, sat in the sink, knowing how much he's been missing out on, absolutely broke my heart.

This morning started at 6am so we could get him fed before 7am, followed by the usual mad dash of sorting childcare and getting ourselves to hospital.
After a two-hour surgery... it finally happened.

We beat the infection before it had a chance to beat us. ๐Ÿ’™

Sonny's Hickman line has been removed and he's now got a port! ๐Ÿฅณ

While Sonny was in theatre, another oncology mum was waiting for her son to come out of surgery too. It was so lovely to catch up with someone who just gets it. Sometimes those little conversations mean more than people realise.

As for Sonny... he handled it like the absolute little champion he is. โค๏ธ As soon as he woke up, he tucked into plenty of food and drinks and recovered brilliantly. About an hour later, we were on our way home.

Now we're watching him tear around the house as though nothing has happened, while we're both sat here with our hearts in our mouths telling him to slow down! ๐Ÿ˜‚

The biggest positive is that we're now at a much lower risk of line infections, chemotherapy is back on track for Tuesday, and once everything has healed... he can finally have a proper bath and even go swimming again. ๐Ÿฅน๐Ÿ’™

Today's chaos ๏ฟผ... ๐Ÿ’™To cut a long story short...The original plan was for Sonny to have his chemotherapy through a cannu...
30/06/2026

Today's chaos ๏ฟผ... ๐Ÿ’™

To cut a long story short...

The original plan was for Sonny to have his chemotherapy through a cannula today. However, when we got there the doctor wasn't happy with that plan and spoke to the surgeon to see if they could use the undamaged lumen of Sonny's Hickman line instead.

The answer was no. Because the line is damaged, they can't be sure there isn't already an infection, so they don't feel it's safe to use either side of it.

After another meeting with the doctor and Sonny's consultant, it's now been agreed that the safest option is for Sonny to be admitted next week and placed on the emergency surgery list and not have chemotherapy this week.

We'll find out on Monday morning if there's a bed available. If there isn't, it'll likely be Monday night or Tuesday before he can be admitted. Once he's on the ward, it's then a waiting game for a space on the emergency theatre list so they can remove his Hickman line and fit the port.

The difficult part is that if Sonny develops an infection before surgery, he'll become a higher priority to have the damaged line removed. But if that happens, they won't be able to fit a new line at the same time. They would have to remove the infected line, treat the infection first, and then put in a new line later. So we're all hoping we can get him to surgery before it comes to that.

As if life wasn't complicated enough, Billy is now off school for a week because there's chickenpox going around. With Sonny due to have surgery and his immune system already taking a battering, we really can't risk him being exposed. ๐Ÿคฆโ€โ™€๏ธ

It's been another day of plans changing, more waiting, and more uncertainty. But at least we now have a clear plan, even if it isn't the one we were hoping for.๐Ÿ’›

What a mess ๐Ÿ˜ฉWell... everything has changed. Again.Sonny will now be having his chemotherapy tomorrow through a cannula ...
29/06/2026

What a mess ๐Ÿ˜ฉ

Well... everything has changed. Again.

Sonny will now be having his chemotherapy tomorrow through a cannula instead of his Hickman line. Not ideal, but at least it means his treatment can go ahead.

As for the Hickman line... there's no room on the theatre list for Thursday, so that plan is now out the window too. We don't actually know when they'll be able to remove it, but we're hoping it'll be next Thursday.

The other option we've been given is to have Sonny admitted today and put on the emergency theatre list. That would mean him being nil by mouth every day, waiting for a slot to become available. The problem is there's no guarantee when that would actually happen because genuine emergencies will always take priority. So we'd be sat in hospital for days / weeks, waiting... until either a space becomes available or, ironically, his line becomes infected and then he'd become a priority.
It's heartbreaking that those feel like the only options.

So for now, we're stuck in limbo. A damaged line that can't be used, waiting for a theatre slot, while hoping and praying it doesn't become infected before then.

It's hard not to feel frustrated. Every time we think we've got a plan, it changes. Every appointment seems to come with another hurdle, another delay, another "we'll have to wait and see."

The one positive is that Sonny gets his chemo tomorrow, and that's what matters most. We'll take that win, no matter how small it feels. ๐Ÿ’›

29/06/2026

So, we went to Queen's today and waited to see the surgeon, only to be told there aren't any Hickman line repair kits... ๐Ÿคฏ๐Ÿคฌ?!

That means Sonny's chemo is now delayed by a week, and the plan is hopefully to fit him with a port on Thursday.

The frustrating part? Because Sonny isn't currently showing any signs of infection, he's not classed as a priority. So once again, we're left sitting and waiting... wondering what comes first โ€“ an infection or getting the line sorted. ๐Ÿ’”

For those wondering why I'm so worried... an infection in a Hickman line isn't just a simple infection. The line goes directly into a major vein near the heart, so bacteria can quickly enter the bloodstream. For children like Sonny, whose immune system is weakened by chemotherapy, that can become very serious very quickly, often meaning emergency admission to hospital, IV antibiotics, removal of the line, and days away from home. That's why every extra day we wait feels like such a huge risk.

I honestly can't deny I'm absolutely disgusted that with so many children relying on Hickman lines, there isn't a single repair kit available. How is that even acceptable?

People see a delayed appointment. I see the risk of Sonny ending up with an infection, another five-day stay at Queen's, my other two boys without their mum and little brother at home, and Dale trying to hold everything together while working and being there for all of us.

This is the reality of childhood cancer that so many people never see. It's not just the chemo, it's the waiting, the uncertainty, the delays, and the constant fear that one problem leads to another.

We're hoping to get a definite answer later today that Thursday is even going ahead. Sonny deserves a bit of good news for once. ๐Ÿ’™

25/06/2026

๐Ÿคฏ Guess who's got a hole in his Hickman line?!

Yesterday, Sonny did his usual trick of pulling his line out of his vest and somehow managed to not just unlock it but pull off the tape we put on to stop this from happening!

Our amazing community nurse came to flush and lock it again, and then... boom ๐Ÿ’ฅ it started leaking!
She was absolutely brilliant, acted so quickly and calmly, and stayed with us whilst we waited for a plan.

Off we went to Queen's to see the surgeon, who said he could repair it. I'm not going to lie, I practically begged him to fix it as we had a weekend at Haven booked for Friday and, for once, I thought life had gone a little bit quiet.

Everything was ready to go. He clamped the line and was just about to cut it and fit the repair when the replacement line became contaminated, meaning they couldn't use it ๐Ÿ˜ฉ

To make matters worse, there were no other repair kits available in the hospital.
So we were sent home with two possible plans:
โžก๏ธ They find a repair kit from another hospital and repair it the next day.
โžก๏ธ Sonny goes nil by mouth from 7am for surgery and has a brand new line fitted.

This morning I got the phone call...
"We can't source a repair kit until Monday, so bring him in then."
My head nearly exploded ๐Ÿคฏ
How can we leave a child with a hole in his line until Monday? The infection risk and he's due chemo on Tuesday.

As always, I rang our outreach nurse, who is honestly incredible. I explained that no matter how secure this line is, Sonny WILL find a way to get to it. He gets it out in the car, first thing in the morning, during the day, basically whenever he gets the chance. His latest hobby is getting his "wigglies" out ๐Ÿ™ˆ

We talked about the possibility of a port instead. For those who don't know, a port sits under the skin, has no external wires, and would mean Sonny could have proper baths and even go swimming. It sounds like a much better option for a little boy who sees his Hickman line as a personal challenge.

Unfortunately, there was no room on today's surgery list to fit one.
So now we wait until Monday and hope the repair works.
From what I've heard from other parents, the risk of infection after a repair can be quite high. If Sonny does end up with an infection, the Hickman line will likely have to come out and a port would then be fitted instead.

So for now, our life is on hold. No holiday. No plans. Just waiting and hoping we can get through the next few days without an infection and keep treatment on track.

As always, Sonny is completely unbothered by the chaos he's caused and is living his best life while the rest of us are stressed ๐Ÿ˜…๐Ÿ’›

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