Sonny’s Story LCH Awareness

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

09/06/2026

✨ Chemo Number 19 ✨

This boy never fails to amaze me 💛

Today Sonny had chemotherapy number 19 and, as always, took it all in his stride. He's still not quite 100% when it comes to his food, so the NG tube is staying put for now. As much as we'd love to see the back of it, it has been such a lifeline and gives us peace of mind knowing he's getting what he needs.

The good news is that he's doing so much better than he was a few weeks ago. He's gained a little bit of weight, has more energy, and is back to bouncing around the place as if nothing is happening at all 🤣

Watching him smile, play and keep going through everything he faces is incredible. He continues to show us every day just how strong and resilient he is.

On to the next one, Sonny 💪💛

05/06/2026

Something I've been thinking about a lot lately is work.

In September 2025, while I was on maternity leave, an internal position was advertised. It was my dream job. I went for it and was lucky enough to be successful. I was so excited that I even ended my maternity leave early to start the role.

Just over a month later, Sonny was diagnosed with cancer.

From that moment, everything changed.
There was no way I could continue working. At best, we have weekly hospital visits. At worst, we're admitted unexpectedly with no warning. Add in chemotherapy, medications, appointments, sleepless nights, and the emotional toll that comes with having a child with cancer, and work simply wasn't possible.

I remember feeling guilty. Guilty for my colleagues. Guilty for the students. Guilty for letting people down. Then guilty for even thinking about work when my family needed me most.

In January, I was called into a meeting and told that my entire department would be made redundant in August.

The timing couldn't have felt worse.
When you're living one day at a time, trying to process your baby having cancer and learning how to care for them, the last thing you expect is to find out that the career you worked hard for, and the job you were so excited to start, is coming to an end before you even had the chance to truly do it.

Recently, I've heard comments suggesting that I should be back at work, that childcare should be split differently, or that I should leave my job and claim benefits.

The truth is, what our family chooses to do is nobody else's business.

Unless you've walked this path, sat beside a hospital bed, waited for blood results, rushed to A&E with a temperature, administered medications, managed feeding tubes, and carried the constant worry that comes with childhood cancer, you simply cannot understand the decisions families like ours have to make.

I didn't stay connected to my job because I was avoiding reality. I stayed because I didn't want to lose myself completely. Somewhere deep down, I was holding onto hope that one day Sonny would get better and I could return to the career I loved.

Cancer doesn't just affect the person diagnosed. It impacts every part of family life, including careers, finances, relationships, plans and dreams.

So before judging a parent caring for a seriously ill child, remember that there is almost certainly a story you cannot see.

We're all just doing the best we can with the hand we've been dealt. 💛

This morning we woke up to Sonny playing with his Hickman line 🤦‍♀️ With this heat he’s been living in loose clothes, wh...
25/05/2026

This morning we woke up to Sonny playing with his Hickman line 🤦‍♀️ With this heat he’s been living in loose clothes, which has made it much easier for him to get to… and somehow he managed to unclip the clamps 😅

So, on the hottest day of the year so far, off we went to hospital to get his line flushed and “Sonny proofed” 🙈

Afterwards, Sonny spent the day relaxing inside playing with his brothers before we took a trip to see his nana and drop his older brothers off, ready for their seaside day tomorrow ☀️🌊

I am SO happy for them. They have missed out on so much because of cancer, cancelled plans and hospital life. Tomorrow they get to just be kids again ❤️

And honestly… they deserve that more than anything.

25/05/2026

The siblings in childhood cancer journeys deserve the world too 💙

24/05/2026

After 3 cancelled weekends away because Sonny has been poorly, we finally got a family day out today 💛

What a lovely weekend we have had 💛Yesterday we stayed home and had some lovely visits from our best friends. Sonny was ...
24/05/2026

What a lovely weekend we have had 💛

Yesterday we stayed home and had some lovely visits from our best friends. Sonny was off his food again yesterday — there really is no pattern to his eating at the minute. One day he wants everything and the next day he doesn’t want anything at all!

Today we decided to go to the zoo 🦁 After having 3 weekends away cancelled because Sonny has been poorly, we decided to grab today with both hands and just go for it. It probably wasn’t our best idea in this heat 🥵 but the reality is we never know where we’ll be next weekend. We can’t really make plans anymore because things can change so quickly.

The hardest part is seeing the disappointment for the older boys when plans are cancelled and instead of family days out, they’re sitting in hospital with us. Sonny is luckily still at an age where he doesn’t fully understand what’s going on.

But today… we had the BEST day ❤️ We went with Sonny’s auntie and nana and it turned into such a lovely family day out. We kept Sonny safe from the sun with the strongest sun cream I could find, lots of shade and only short periods in the heat ☀️

Can’t say we saw many animals 😂 but honestly just being out together as a family made me feel so incredibly grateful 🫶

24/05/2026

Rare cancer awareness 1 in a million

22/05/2026

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Mansfield
Nottingham

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