Joseph's ongoing journey with Neuroblastoma

[Trazzletoes]

I've lost count of the thread number now, but my 3 year old DS, Joseph, was diagnosed with an aggressive cancer called neuroblastoma last year.

Part-way through treatment he has relapsed (currently still clarifying that, but it's almost guaranteed) and at that point long-term survival is less than 5%.

He is beautiful and wonderful.

He sounds brilliant

Little boys are lovely aren't they.

Thinking of you too, Trazzle. So glad you got good news about the possible relapse. You must be utterly exhausted.

Splodging and hoping you and your boy will be home for the weekend.

Sounds like you've had a rotten time lately. Bloody cancer. I hope this week is better for you and dear Joseph.

Not surprised you're emotional
(hugs)
xx

You are allowed to feel emotionally low, even if Joe seems to be coming through a tricky stage, because it must be emotionally draining and frightening for all of you.

Your body needs you to recover too. I hope you get a good meal and some decent sleep soon

Oh Trazzles.

It's not silly. He is so small still. He's your baby and of course you're scared. You are human and your feelings are probably the only normal things in the very abnormal situation you're in.

Light, love and strength to you and yours.

He sounds like a very special boy.

He is SO special, and such a lovely little lad. I wish I could convey his awesomeness better. He's very calm and gentle and loving.

We thought earlier he may be getting a temp but touch wood that seems to have settled a bit. He's doing well, no one is concerned about him at the moment and he has tolerated his feeds so far so hopefully will continue in the same vein.

It's just frustrating being in hospital and in an isolation room when he seems to be so well, but as he's still on a degree of I/v feed he obviously can't leave.

And I've had a wake up call to stem my coke intake. I drink loads of it because I'm so exhausted (overnight in hospital Joe is having nappy changes at least every 3 hours and last night his drip machines wouldn't shut up) but when I have too much I come up in scaly eczema. It was just on my elbows til now which was find but it's just spread massively today. I need to go cold turkey and it will clear up in a few days but its so hard when I know I will feel so much more tired. Necessary though.

Anyway I'm off to sleep. Night all

His amazingness really comes across- you've got a fab boy there.

You need to look after yourself too so hope cold turkey goes ok!

Still thinking of you all & sending lots of love & hugs.

Joe does sound absolutely awesome.
And, if you don't mind my saying, so does his mum.

Hope you got some sleep last night, and you find a good coke substitute today.
(I'm assuming you're referring to coca cola, Trazzles , although I'm sure no one could blame you for whatever gets you through the day!)

I think I've got enough on my plate without having a drug habit

Joe's diarrhoea is just getting worse. Am just having a little cry and feeling sorry for us both. Just want to go home so we can relax, sleep and get on with treatment.

Hi Trazzle,

Sorry to hear Joseph has bad diarrhoea. Fx it gets better soon and you get home.

Thinking of you everyday.

Sorry, just caught up with this. Joe (and you of course) are going through the mill.
We will be moving back to England next month. Apart from retrieving our goods from storage, one of our first jobs is blood donation. I am B+, DH A+ so there's a couple of units right there.
Very best wishes from a hot and humid Malaysia.

Oh bigger off diarrhoea! Give Joe (& his mum & fab family) a break!

Still splodging.

Bugger, not bigger! (Sorry cant think of anything useful to say but really wishing you well).

He is awesome, he gets it from you! Sorry about the diarrhoea and sleep deprivation. It must be lonely in isolation. We are here. X

Sorry to hear the diarrhoea's been worse

Thinking of you all.

Really hope you're getting home today Trazzles. Keeping everything crossed.

Checking in with good thoughts as always xx

Thanks. Horrendous diarrhoea now on day 5 and no sign of it shifting so no. We aren't going home today. Or in the foreseeable

Oh no Trazzles that's awful

Poor little Joe and poor you ... xxxx

:(

Sorry to hear you won't be going home just yet. You are doing so well, don't worry, J's tummy will settle soon I'm sure. Can't imagine how hard life is for you at the moment, but sending positive thoughts your way.

Oh the poor little fellow. So sorry for the all the awfulness you are going through. Really hope things settle down soon for all of you.

Sorry to hear there is no improvement with the tummy upsets. I hope things pick up very soon for you all

Thanks. Stark reminder this morning that, as frustrating and annoying and horrible as this is, it's nothing compared to what some other families are facing