Today, the tears finally came. Months of not being able to cry came to a halt today.
A beautiful little boy who we had the pleasure of meeting on our ward, passed away on Monday.
He had bone cancer the same and Ellis and his Mum and I bonded over the rubbish hospital food and lack of wine!
See this boy wasn’t at the beginning of his journey. He had crossed the finish line and rung the bell.
He did it.
This is what a lot of cancer parents struggle with the most when treatment ends. People assume it’s over. People assume that when their hair grows back, they’re fixed.
But it couldn’t be further from the truth.
Ellis has a 55% prognosis from 5 years after the date of diagnosis.
We have not even done 1 yet.
The treatment being over is just our safety net gone. It’s our constant check ins with the team, having the nurses and doctors on hand to answer any questions. You get used to feeling safe…. in a world where actually, you know you’re not.
Then as soon as you get comfortable, it chews you up and spits you out.
Back into the real world, but for this next part you have to do it on your own.
I feel so many emotions tonight. I feel an almost guilt like feeling, why that poor family. What did we do any different?
I feel sad. Beyond sad actually, but tonight I’m too emotionally exhausted to find a more suited word.
I feel scared. What will these next 4 years have in store for us? I can’t even let myself go there. I feel sick.
It’s 2020, how is this still even happening.
How are our children still not beating this horrible disease. There has to be more that can be done. Right?!
I don’t want this life anymore for me and my kids. Enough now. But there is nothing I can do. I can’t stop it.
As a Mum, you promise yourself you will protect your babies. You will keep them safe forever, no matter what. You would die for them if you had to.
But I’m not in control of our situation. Not at all.
I pretend I am, to them. Lily writes me letters thanking me for keeping her brother safe and it breaks my heart. But I’m not. No matter how much I want to.
I wish things were different.
I wish it didn’t exist and it wasn’t a thing.
I wish every child would be allowed to have their whole life ahead of them and not have to spend their precious last months in a hospital having barbaric chemotherapy.
I wish it didn’t like children. I wish it took one look at them and went the other way.
It’s not fair.
And I can’t see it changing anytime soon.
If you’re with your babies tonight, let them have an extra cuddle. Read them an extra story. Kiss them that little bit more.
No, I can’t promise to keep my babies safe forever, but I can promise I will love them for eternity.
And that has to be enough.