High dose chemo and beyond. Onwards and upwards hopefully!

[Trazzletoes]

Another continuation thread for Joseph's ongoing fight against the aggressive cancer, neuroblastoma.

I've never heard of Surfs Up so I doubt it

There's a bird park near us with some penguins in and it's his favourite bit.

Btw I've sorted the drinking issue - there's like an ante-room or entrance chamber in to his room. I make a drink in the kitchen and then leave it in there. He will accept me walking in to an adjoining room where he can still see my arm while I hide round the corner and drink/ eat with the other hand sneaky!

Thanks to whoever offered films from their local Blockbuster - it's very much appreciated but he is concentrating on a rotation of about 5 at the minute despite me having brought in every age-appropriate film I own and having worked for Disney, that's a lot plus the play staff have actual hundreds of films to borrow as well.

So thank you kindly but it's not necessary

www.imdb.com/title/tt0423294/ I have a copy I could send you if you want. I know you say he doesn't need more, but you must be going spare watching the same 5 films over and over!!

www.imdb.com/title/tt0423294/ sorry clicky link now!

Oh bless you Fizzy yes I'm now word perfect on The Lion King, 101 Dalmatians, Treasure Planet (English AND Russian), The Reef and The Princess and the Frog

And Russian! Wow! Everyday is a school day!!

Ds is obsessed with Cars right now! Lightening McQueen has been the reason of several meltdowns recently!

The lion king is a great film though! And one you can sing along with!

hakuna matata, what a wonderful phrase, hakuna matata ain't no passing craze
It means no worries for the rest of your days!

"But Mummy I don't LIKE your dancing"

Haha we don't speak Russian (well, I do but only a teensy bit), he just liked the idea of watching it in a foreign language. Many times.

Cars is an option that he is rejecting at the moment. And he calls him Lightning LeQueen

See, no matter how they are feeling they can still express their displeasure at mums embarrassing them!! Ds isn't quite at the talking sense part, so I'm going to enjoy it while it lasts!

Good news about the drinking! Not obv referring to gin there. Or am i?

I like Cars btw

Good news indeed about Trazzlehydration.

Let us know if you need emergency gin/ vodka supplies.

Yes of course!

The body in another space, with an arm out looking like it's doing something different thing. I do that with gin and chocolate. I think if someone thinks I'm getting a binbag out of the cupboard or playing with tupperware it doesn't count. Damn, it was the obvious solution!

Good work Trazzles

Embarrassing mum dancing. Inspiration. Today my neon trousers and silver sparkly vans were eye-rolled at . Next time it happens I will communicate "I don't care what you think, I'll wear what I want, I'm a grown up and can do what I like, now do your homework and stop being arsey" through the medium of dance and mime.

Suggest taking up Pistey's idea if you're having to watch the same five films again and again. Gin! Perhaps you could put that in a camelbac? Happy to join whistler in ensuring supplies are air-dropped into Yorkshire to ensure your sanity remains intact.

Splodging away for Joe, penguins and fluid retention disappearing.

I got somewhere a knitting pattern for a penguin as I made one for dd. It was not very difficult. If you want I can look it up and post the pattern in your thread if you want to give it a go.

I am also more than happy to knit a penguin for Joe - just let me know which colours he likes.

Hope the scan wasn't too bad for Joe and that he can have a good sleep. Hoping for a better day tomorrow.

So glad that you have found a solution enabling you to drink/eat.

x

Am working on felt penguin RIGHT NOW...
Exciting.
Might make him cossacky with a fur hat and Rasputin beard

Dikker I'll have a to at a knitted penguin if you want to link!

Much as I would LOVE kill for emergency alcohol supplies, I fear that the hospital maaaaaaaay just frown upon me being tipsy hammered in charge of a seriously ill child, but thanks I always look at the tinnies in Tesco with desperation in my eyes!!!

Joe's Consultant is reasonably happy with him, DD is still sick as a dog .

I am impatient for good news.

Another day done. Seems like he's progressing still within the norms for this very serious treatment isn't he? It must be hell to see him like this but you're getting through it and so is he. You're doing so well What a fantastic mum you are.

So sorry that your poor dd is ill & hope she feels better soon.

You are all doing so well - it's hard to know what else to say - but you will all get through this & Joe will be even more amazing than he already is!

Gingers crossed as always & splodging brightly.

That's great his consultant is happy with his progress. Go Joe!

You're doing an amazing job too Trazzle.

Oh and sorry about dd being ill, poor thing. Fingers crossed she is feeling better soon xx

Northern yes he is thankfully still well within the realms of " normal" even though right now that feels like "horrific".

And flipping heck, what a 24 hours!

DH was in last night and Joe's pain meds were changed - the poor little guy has been in agony ever since. The longest sleep either of them got last night was 40 minutes . It's carried on all day today and he is still in a lot of discomfort now as well as feeling very sick.

It's awful to see him like this and be so powerless to help.

On the positive side, his neutrophils have crept up a teeny tiny bit and... his bowel sounds normal! . Maybe in a few days there might be the teensiest tiniest possibility that maybe perhaps possibly he could potentially have a tiny sip of water... Not holding out any hope though.

And with that, I'm off to bed. It's going to be a long night.

Night Night Trazzles

I'm sorry that Joe is in pain. Poor little lamb. And I feel for you and your DH having to watch such a precious, wonderful, strong little boy so very helpless.

Splodging for neutrophils creeping some more and bowels that not only sound normal but are normal.

Lights on here too. Really, really great news on bowel function. was it morphine knocking it out or something?

Hope you get more than 40 mins sleep... Come on Joe's neutrophils, get a move on with your multiplting please.

about the pain, hope they manage to get it better under control for tonight.

Good news about his bowel and very good news that the neutrophils are increasing.

Hoping that tonight will be better.

Glaikit - I will look up the pattern (it was in a magazine) and pm it to you if you like.

I'm so sorry that I haven't been on and haven't caught up on the thread for the last few days. I promise I will, very soon. I've been in ICU with a very poorly Dad after emergency bowel surgery. He's in high dependency as of this afternoon so I will be able to have my phone on

I have still been thinking of you and Joe, I hope you are all doing ok and Joe is comfortable. I've missed reading your updates.

Much love to you xxx