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Original poster

Joseph's ongoing journey with Neuroblastoma

997 replies

Trazzletoes · 13/05/2013 22:24

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.

OP posts:
Original poster
Trazzletoes · 14/07/2013 14:58

Thanks all. One good thing is that he is losing a LOT of fluid now he's off the antibodies! He's on a drip so won't get dehydrated, but does very much need to she'd some of this extra fluid as it won't be doing him any favours.

OP posts:
tholeon · 14/07/2013 19:50

Handholding, sweetie x

ChippingInHopHopHop · 14/07/2013 21:10

It's all so scary isn't it. Everytime you dare to hope, something smacks you around the chops again :(

Yes, sorry, I'd forgotten this part was the clinical trial... though, can't they divert from that? Surely doing that would tell them something as well?? And apart from that, Joe is more important than the results of a clinical trial. Even if they change the dose they can (hopefully) prove it works?!

It's good news about the fluid though. I hope he has a good night.
xxx

Original poster
Trazzletoes · 14/07/2013 22:20

J is more settled tonight than he has been and his heart rate, although high at 130ish, is manifestly lower than it has been - Monday it was running at a steady 200!

He's had various things done which just seem to confirm that his digestive system isn't doing what it should but he doesn't need any surgery(!). The surgeon did come to see us and said "well, you 2 seem to know what you're talking about so I'll talk to you properly"!!!!!!!! It did make me laugh.

They can tinker with the dosage of the medicines I think, with approval, but I'm anxious that if they do that, they might lessen the efficacy of the drugs. Given that success is far from guaranteed anyway, I'm loathe for Joe to lessen his chances in any way.

They don't know what's wrong with him at the moment, but that's totally normal. The c diff tests take a while to run but they're treating him for it in the meantime since its one of the most likely possibilities.

We will see how he goes anyway.

OP posts:
ajandjjmum · 15/07/2013 01:12

Hope you all have a decent night, and that the 'tinkering' helps Joe.

ShaggingZumbaStylee · 15/07/2013 01:43

xx

ClockWatchingLady · 15/07/2013 06:59

Hope the night went well.
Thinking of you all.

RoooneyMara · 15/07/2013 18:11

Is he on metronidazole? If he finds it hard to tolerate then vancomycin is much easier to. (might be different for children)

Also use bleach solution if you're cleaning up, nothing else will kill c diff, and when you wash your hands, wash them really well for like a minute, with soap, to avoid reinfection...also make sure everyone who goes near him is washing their hands before and after touching him.

The gels do NOT work on c diff.

Sorry to butt in like that, just my twopence worth on that topic but I am thinking of you and wishing you all the very best of luck xxxxx

Original poster
Trazzletoes · 15/07/2013 18:36

Thanks Roooney I think he's on vancomycin... They certainly mentioned it yesterday but given that he's not digesting anything, it would also be something of a surprise!

All body parts are being scrubbed to within an inch of their life Grin they don't have any gel in the isolation rooms here, most probably for that exact reason.

Thank you though, it's always good to be reminded of these things just in case.

OP posts:
RoooneyMara · 15/07/2013 19:33

Oh wow, you have a good hospital Smile it's amazing how many nursing staff etc aren't aware of these things so I am so pleased to hear it's being done properly.

How are you doing this evening?

LatinForTelly · 15/07/2013 23:34

Hope Joe is continuing to be settled, and maybe he's been able to have his vitamin A? I hope his tummy starts to improve very soon too. Poor Joe and you, with yet another week in hospital. Thinking of you all.

toomuch2young · 15/07/2013 23:45

Hi Trazzles. So sorry to hear Joe is back in hospital and isolation as well,,but sounds like things are going in the right direction, fingers tightly crossed.
Also reassuring to hear the hospital are so spot on with hygiene and dealing with infection - how it should be of course, but sadly not so commonly.
Hope your all managing to get a nighta rest tonight.
xx

Original poster
Trazzletoes · 15/07/2013 23:51

Roooney I think it's a good (amazing!) ward. I guess though that the ward HAS to practice infection control over and above anything else. Every single person there is acutely vulnerable. They simply cannot take any chances. I know that should be the same across the NHS but I guess it's more of a reminder on the cancer ward.

J perked up a bit this afternoon. There's still no ostensible reason that his stomach isn't working. If it doesn't start to improve by teatime tomorrow he will be started on an I/v feed which means we are in for a minimum of 5 days from then.

His pupils have stopped reacting to light. A reasonably common, but gross, side effect.

I managed to meet a friend this evening for a couple of drinks and then of course bumped in to one of Joe's Doctors... He seemed to find it quite amusing that I was taking advantage of DH looking after J in hospital to socialise with a male friend... I suspect I can look forward to some knowing winks tomorrow.

OP posts:
RoooneyMara · 16/07/2013 08:12

Yes he will be winking at you Grin

I'm glad you got a break for a little while

the pupils not reacting sounds upsetting. I hope that reflex comes back, soon.

Hope you have a better day today xxxx

northernlurker · 16/07/2013 08:21

Just been catching up and will keep praying for you all Smile

Original poster
Trazzletoes · 16/07/2013 15:37

Oh God, where to start... Joe will be in until at least Sunday night as his stomach still isn't working so he needs I/v nutrition again which needs a minimum of 5 days.

He had an ultrasound yesterday which showed that the "waves" didn't react normally in an area where his operation was. It might be scar tissue. But it might not be. We know children who have had each of those scenarios so we know relapse is a very real possibility. I don't know what, if anything, they are going to do. We need to find out from Joe's consultant but I have no idea when we will see him next.

I've eaten twice my body weight in crap today. I have no idea how I can cope with this again.

OP posts:
ToffeeWhirl · 16/07/2013 15:57

God, you poor thing. Could you contact Joe's consultant? It must be so dreadful not to know what you are dealing with. I'm so sorry.

RoooneyMara · 16/07/2013 16:01

That sounds like really bad news. I'm not surprised you're feeling this way, it is a huge huge thing to cope with, all of it is, and I am astounded at how far you have come already.

Much love, Trazzle. I hope that he picks up with the IV and is out on Sunday...it might go quickly, you never know.

RoooneyMara · 16/07/2013 16:03

Sorry, I just read that back, I didn't mean I think the actual thing is bad news iyswim (I have no idea) but it is bad that you'll be stuck there till the weekend, not knowing what's going on. #not very articulate today

minmooch · 16/07/2013 17:00

Oh Trazzle you will cope because you are amazing and because you have no choice.

Hospital living is so stressful, the disruption to family life unbearable, no privacy, no normality, no switching off and having grown up time. But you will continue to do it for your Joe.

I think of you all often xxxx

sybilfaulty · 16/07/2013 17:09

Thinking of you trazzles and your lovely boy.

Am giving blood tomorrow and will think of you all then.

Praying4Beatrice · 16/07/2013 23:02

This reply has been deleted

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maxmissie · 16/07/2013 23:04

Thinking of you, sorry that you are having to go through this stress and worry again. Sending you love, light and hope.

NorksAreMessy · 16/07/2013 23:12

As always, you are in my thoughts last thing at night.

So sorry to hear this crappy news. :(
It doesn't help, I suspect, that sleep is very difficult in this heat, so everything that is hard enough to start with is made that tiny bit harder.

You know that we will do anything we can to help.

ChippingInHopHopHop · 17/07/2013 03:47

Sorry to hear that :(

Don't worry about eating crap, but I hope you are finding a way of getting some decent food as well. Surviving on coffee/chocolate/biscuits wont help you cope with so much.

Why can't you ask for an urgent apt with Joe's consultant?

As many big hugs as you can deal with
x