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Ms Single mothership, Berowra Heights (2025)

09/03/2025

But I love Juan ❤️

07/03/2025

Let it go babes. ✨💫☄️🌌

06/03/2025

I have six thousand followers here, can i please get six thousand prayers for my baby?? 🎗️💪🎗️❤️

Finally, Charlie’s Hickman line is back in. She’s completed two weeks of caspofungin through cannulas, which were also being used for blood transfusions. They weren’t drawing back blood though, so to get full blood counts from Charlie over the last two weeks, was pure torture. The nurses were having to get 2mls into a tube from just finger pricks. We tried once a “flag” into a fine vein in her little wrist but she hated it and was screaming and crying the whole time.
It’s heart wrenching, but it needs to be done so I have to just hold her down in the end, after all of the supportive words I could come up with didn’t work and she was still screaming or refusing.
The caspofungin had to be every day so we’ve both had to take her in every day there and back and we are all really out of sorts and tired. Today it’s sunny, she’s with her dad and sister and puppies, I don’t think she has to go in today!

In amongst the caspo and cannula dramas she’s had to have GCSF, CT, MRI, BMA and next week MIBG.
These are baseline scans to go to Southampton to try and join the BEACON2 Trial.
It’s been scary because with delays like- the surgeon isn’t happy to do it today and another day just a communication error the line didn’t go in that day either, made it feel like we weren’t going to make the trial. I haven’t heard but I think it’s going to be still ok to get onto it. I should call, but I am in frozen mode currently.

I don’t think any adult I know could actually go through what she’s been through this week let alone the last almost five years.
I am so sad. Probably the saddest I’ve been over the last few years of all this. I imagine maybe now is like the pain wall people have to breakthrough when doing a crazy marathon or something.
Knowing what’s ahead, this new trial being so very chemo based, I’m so scared and full of dread but it has to be done. We’ve had good results from these chemos before, so there’s that.
🎗️💪🎗️❤️