Liamsfund

Things that are normal to us (well..not for me for a few decades 😅), are a mountain to climb for poor Liam.

So, Liam went clubbing 🪩🕺🏼for the first time ever.

My anxiety was through the roof, I was tempted to write my phone numbers on his arm with permanent pen - but I let it go, so proud of myself. I told him I'd pick him up in Windsor 🏰, no matter the time, if he needed me.

He did need me.

Got kicked out of the club he was at with his friends for "being drunk". Except, he wasn't.

He was just a kid with ataxia (wobbly walk) and facial palsies (slurred speech, especially when emotional and tired). He went outside for fresh air and the doormen didn't let him back inside, turfed him out into the freezing cold for "being drunk" 🙄 So I had to go and rescue him at 1 am.

He was devastated. That's what bugs me the most, he was SO SAD!

I mean, I get it. He looks drunk - but he tried to explain and they just wouldn't listen (have probably heard every excuse under the sun and couldn't judge the situation, but how sh** is this on top of everything else 🥲).

👉Labyrinth Nightclub Windsor

Many years ago I wrote a Fb post about the "room of doom".

The rooms of doom are the little side rooms in every hospital, where they have comfy chairs, sofas even, boxes and boxes of tissues, posters with helplines and walls that sag with the weight of the grief that people seep into them when given updates here. The room of doom. The room that changes your life forever. The room you walk into as a mum of two healthy boys, and walk out of as a mum of two boys, one of which is has a deadly brain tumour growing in his little head.

Never did I think I would ever see OUR room of doom ever again. Or even go back to Reading, as they actually sent Liam home from A&E at first, and only after me questioning their decision, did they ask us back the next day - when he was diagnosed.

Once Liam had been diagnosed in Reading hospital, his care transferred to Oxford, and our local hospital is actually Slough, where the shared cancer care was provided. In fact, I tried to avoid going back to Reading at all cost. For obvious reasons.

And managed not to go back for almost a decade.

Three weeks ago, Simon was poorly and we went to Reading. I didn't actually make it further than the car park, as he came back from A&E within minutes having been dismissed and asked to come back the next day. Except, he never really made it back the next morning as he deteriorated, we went to Slough A&E (I refused to go back to Reading) - and he was subsequently diagnosed and operated on acute appendicitis.

His appendicitis was not even 3 months after Mark had appendicitis, and also had surgery in Slough, same ward, same consultant.

Not even 3 weeks later (this is the stuff that is so rare, we should play the lottery), my nephew became poorly last week. The way he presented was almost exactly like Simon, to me, it was so clear that he probably had appendicitis.

My sister, after going from pillar to post for several days, ended up at Reading A&E. Twice.

My nephew eventually got extremely poorly, and someone finally decided to do an ultrasound (should have happened at least 24-48 hours earlier). Not acute appendicitis. But a burst appendix, which now required urgent and life saving surgery - his little tummy was already full of green puss.

Long story short. A week later, he is still in hospital. Liam and I visited today, and poor Liam had a ton of flashbacks, this being the first time back on a children's ward with someone he loves in a gown, hooked up to machines, beeping, ward noises, doctors and nurses all around him.

And when we left, we walked past it. There is was. Our room of doom. Which sent me spiralling down a flashback to the point of feeling physically sick. This is where it started. Where life changed.

But the amazing thing is, almost a decade later, I walked past that room with LIAM BY MY SIDE.

I still see his little face in the side room, on the bed, on the phone to Simon. Before we knew. Before he knew.

Liam is waiting for MRI results and for the first time ever, I have not chased them. They MRI was in January, and Oxford have not been in touch - probably a good sign, or a sign of being chronically understaffed and having failing follow up processes. Who knows.

What I know is that I have Liam, and he is a light on this Earth than no one can quite understand how powerful it is.

The room of doom. Yes, everything changed in here - and I count my blessings that, for now, it hasn't been the first step in a story that ends in eternal pain and loss. How lucky I am 🥰

Back in 2014, when Liam was first diagnosed, one of the first people I connected with was another mum on the same journey. With a young child, recently diagnosed with the most vicious of cancers that had wrapped around his heart, Margie and I texted on and off as our boys went through treatment in Oxford.

We both saw our children survive. Make it through absolutely horrendous and life changing surgery, radiation and chemo. And they did it - they lived.

We also saw many, many other children die. Children that had shared wards with us. Children that did everything right, that were beautiful and loved - and yet they died. All the love in the world couldn't save them.

Margie and I stayed in touch. We bumped into each other in Oxford. And Mark and I were lucky enough to be able to give Margie, Reggie and the family our lodge in Devon when they went down to buy a puppy.

A couple of years ago, Reg relapsed. He'd been doing so incredibly well, always a beacon of hope to me as like Liam he was one of the few that lived. I held on to tht hope. When he relapsed, I was devastated. And hopeful that he would beat cancer again.

Today, Reggie was buried.

He was 13 when he passed, surrounded by the never-ending love of his family and with trust and belief that he was chosen and ready to be in heaven. I am so glad he had this faith. A faith that is carrying Margie and the family through a valley of death they never chose to walk through.

As I type this, Liam is next to me, he's as well as he can be. Still figuring out life, which is hard when you don't know what life will bring.

We talked about the children that survive cancer, and he asked the question I never dare to ask, but Liam is brave, he's clearly contemplated this and asked me: is surviving actually better? Is it better for the children? Or is dying in fact the kinder ending? No more suffering, no more dealing with life that's difficult for someone who's survived cancer. He isn't suicidal, he's just matter of factly asking a very good question.

I have no answer. How could I? I selfishly never ever want to lose him. He's the best!

Today, at Reggie's service, I saw pain. Deep, raw, unbelievable pain that can only be caused by loving deeply, unconditionally - and not long enough.

May you all keep your loved ones close this Christmas, may you all be blessed with peace 🎄❤️

Nine years today since the eye check at Specsavers revealed Liam's brain tumour, and life changed forever in the blink of an eye.

If you're looking for the single most important being that kept Liam going, always made him want to get well quick & home when in hospital and cuddled her way through the valleys of sadness that sometimes appear for any of us, here she is. 9 years today 😍

2014 vs 2023 - and a lifetime of pain, challenge, hope, love and resilience in between, and beyond.

We met a fellow medulloblastoma family here on holiday, pure coincidence but what a load of shared stories and important for Liam to meet someone who is similar in age, has a similar story and faces similar challenges.