Wow. What a few days.
Ellis is on cycle 3 of 6 chemos. After the next 3 weeks are complete he will be half way through ❤️
In terms of physical health, he has had the best week yet. He isn’t feeling too sick this time, we have our own room, his physio is super impressed with his progress and the fact he is hitting targets after 2 weeks that other children aim for at 12 weeks!
But mentally it’s all gone wrong for him. He has hit a wall.
The laid back, amazing, beautiful nature of this boy has been stolen and replaced by a defeated shell of himself. It’s heartbreaking.
He has cried uncontrollably this week at the sheer unfairness in it all. He has begged me to take him home. He hasn’t been sleeping, which is a catch 22 because it makes him feel worse.
He doesn’t even look like him this week. He looks broken. And I can’t fix him.
Due to the COVID-19 we have had to move from UCLH to GOSH which was a bit unsettling, until we saw all of our lovely T11N staff which was amazing. These lovely people have built up a relationship with us all and they feel like family. They know Ellis and how laid back he is, how his body reacts to each different chemo and what he likes to do.
But this week even they are shocked. They have never seen him cry, never seen him look so empty. He makes everyone smile on the ward normally with his sense of humour, positivity and matter of fact attitude. But not this week.
My chunk of a baby, the baby who never made a fuss, my easiest by far, needs me this week. He needs me to fix him but I can’t. And it’s breaking me.
As a parent, you’re meant to make things better. You’re meant to tell them it’s going to be ok and mean it. I can’t do either.
I want to take it all away from him and have it myself. No child should have to go through what he is going through. It’s not fair.
It’s like hell on earth this week in here. He has a PICC line for his chemo and fluids but for some reason, his is extra sensitive. When he moves, the lines get bent and the machines beep. Sometimes he doesn’t even have to do anything and the machines beep. Normally at UCLH we are on a ward so when they beep, it’s not long before a nurse comes over and resets it back to normal. But here is a different story altogether. We are all separated, so we have a whole entire walled bay to ourselves. Great because we don’t have Snory McSnorason from last time next to us, but not great in the fact that no one can hear his machine. GOSH do things differently to UCLH too, so instead of 2 drips on his stand, he has 4. That’s double the chance of it beeping and going wrong. And it does. A lot.
Being in the back of beyond in this ward means that when the alarms go off, the nurses can’t automatically hear. So I have to get up and press the nurse call button. Great, that should work, right? Wrong.
The nurses can’t even hear that. So we wait up to 20 minutes sometimes before anyone comes in. I end up walking braless in my pjs round the ward like a sleep deprived angry mum, trying to find any human being I can to turn this fucking noise off.
That happens literally every hour or so. So we’re only getting maximum half an hours sleep at a time, before it happens again.
On this chemo we always go home after 72 hours, we don’t have to wait for any results like the other one, it’s just home time. We can check the chemo pump to see how long it has left and literally as soon as it’s taken down and finished, we are out. We can’t wait.
Don’t get me wrong, we are so incredibly grateful to still have the chemo going ahead. The NHS are worth their weight in gold.
Doesn’t make it any nicer.
He’s finally asleep now and hopefully tonight will be kinder to us. Or him at least. I’m on high alert. Watching the machines, trying to silence them and grab a nurse before he’s disturbed too much.
You kind of start to become delirious after no sleep. I genuinely woke up last night when the nurse came in and though it was Dobby from Harry Potter. Shit my pants.
We don’t know what day of the week it is, what time it is or clearly who is even coming into our room, but what we do know is that tomorrow is home time.
When we get home, we are going to sleep, eat pizza and sleep some more. With no beeps, no dobby and no machines.
Until 2 weeks time when we do it all over again…