Mini-trazzle and his candles vs. neuroblastoma

[Trazzletoes]

Hi, continuity thread for my little DS (3) who was diagnosed with neuroblastoma last week. Much gratitude for all the support the Trazzles have received. You nasty nest of vipers, you

I can't add to the wise counsel here, so am just sending you another virtual hug. I hope today is better.

Sorry you both had a debilitating night Trazzles 4am watch is the toughest. Hope tonight is better. Wishing you continued strength for the week ahead x

Hope your day has been better. Sending you the biggest hug on the Internet.

Always here for you, always thinking of you all xxx

Thanks all. DS has been brighter still today. That is, until he totally missed his nap time and turned in to a pre-school terror. Hell hath no fury like a hungry and tired 3 year old who won't eat or sleep.

It is so hard to discipline him at the moment, but the tv is off tomorrow (a rod for my own back apparently!) because he spent approx 4 hours (no kidding!) SCREAMING at me. He has eaten at mealtimes which again is something. He's back on the feed tonight but we've reduced the level and given him some anti-sickness meds. Cross your fingers!

Off to hospital tomorrow for a kidney function test. I'm feeling organised because my bag of goodies is already packed! this is a first!

Buffy hope the nursing strike is over.

Glad to hear that you and DS had a brighter day, and hoping he has a better night x

So pleased to hear he has had a better day :)
Have been thinking of you all today.
My ds1 and i lit candle for your ds at church today, I hope you don't mind?
No TV?
Blimey, you are even braver than I thought! :)
Hope tomorrow goes well x

Glad to hear he's had a brighter day. Hope you all get a good nights sleep & all the very best for tomorrow.

I hope you have a better night... X

No TV? That sounds much more like a punishment for you, not him

I'd let him 'earn it back'... very easily!!

It is really hard to discipline them when they are this ill (and upset/scared/unsettled) and you do have to let a lot go, but you do have to draw the line for his sake and yours - and I have no doubt that your 'line' is drawn in a very appropriate place x

It's good he's been eating again (more that it shows he's feeling 'ok' than for the actual food really).

Fingers crossed for tomorrow :) & for a decent nights sleep for you all
x

Sorry for your difficult day after an already difficult night, Trazzle. It must be so, so hard to discipline in these circumstances. I like Chipping's idea re the TV punishment of letting your DS "earn it back" again - perhaps for being well behaved for the kidney test?

Crossing my fingers for a good night for you and MiniT tonight.

No idea whether he'll be sick this morning, but he was chipper when he called me in an hour ago to point out that, at bedtime, I'd forgotten to do piggy supermarket (or: this little piggy went to market!) on his toes like I'd promised . Also he remembered we're off to hospital today and that it's not going to hurt .

Hope you have also had nice sleeps.

Oh, and tv punishment was, unsurprisingly, DH's idea. He just came out with it and then it couldn't be unsaid.

Think I will modify it to: no children's tv before we go to hospital. I can't stop him watching it while we're there anyway!

Good morning trazzletoes and tiddlytrazzle

Am pleased to see that tt has a strong sense of justice. The omission of pig related tickling games is seriously contravening his toddler rights. :)

Hope you have a successful day.

Good morning Trazzle family,

occasional poster here, I hope it goes well today, sending you a big splodge from the grey skies of Manchester x

Still splodging light here in Wiltshire too x

Hope the kidney function test goes well.

Sorry to hear that yesterday was a bad day, I find it hard to discipline my DS because he's just so cute, I'd be flipping useless if he were ill!!

Earning back the TV is an excellent idea

Splodge of light from Cambridge here and hope the kidney function test goes well today x

Hope all goes well with the kidney function test today. Very good that Mini Trazzle has been eating a bit and insist on his tickling rights!

Very tough for you that you have had such disruptive nights.

I also wouldn't ban TV totally, maybe try to limit it a bit or stick to DVDs so you have a good idea what he is watching and it is not too hyper.

Trazzle, hope it went as well as it possibly could.

Fabulous he had enough energy to scream, for four hours! It's only when people start to feel v slightly better they get grumpy. So the feeding must be giving him energy.

Agree hoe difficult it is to maintain discipline. But you won't need to normally, he will be fine. It's fear of the jnknoen

Unknown. Sorry, on phone. The jnknoen is indeed scary.

Results outstanding on kidney function test. However DS' potassium levels were low so he has been kept in overnight. DH is with him.

I found an information leaflet the consultant had given us and decided to read it. Big fucking mistake.

I've been studiously avoiding survival rates and there it is, in my face, in black and white. 35%. Without factoring in the likelihood of a relapse. Which is incurable. And highly likely. 35% fucking percent chance that my beautiful boy will have a first day at school. Shit do we need a miracle.

I can hardly breathe I'm crying so hard. Today he was asking why his tummy hurt and I was explaining about the tumour. He told me to just take it out and make him better. I can't. I can't protect him. I'm his mummy. Protection is what I should fucking specialise in ffs.

I'm trying to put on a brave face and tell myself that someone has to be the lucky one. That there ARE success stories. That he is this special, he can be even more special and get through this.

This is the absolute worst I have ever felt in my entire life, without question.

35 fucking percent.

And his hair has started to fall out.

BASTARD BASTARD FUCKING CANCER. I FUCKING HATE YOU!

Oh Trazzle

I have nothing to say, except if you want to rant, we're here. And we'll continue to be here.

((hugs))

Nothing I can say will make it better and I am so, so sorry you are having to go through this but you are doing your very best for your little boy. None of this is your fault. Sending a huge hug and a big splodge of light tonight.

So sorry here too, words are hard to find, but please know that there are such a lot of people out there thinking about you and praying for the best outcome. XXX

Oh Trazzle, that is so awful. I just have no words for it.

The only thing I imagine to focus on is that 65% do survive and we all have to believe that your boy is one of those 65%. And yes, there are lots of success stories and treatment does keep improving.

It must be so hard to explain to him what is going on and why he is feeling so rotten. Can they not give him more medication so he doesn't feel the pain?

Good news about the kidney test though.

Let me know if there is anything I can do please.

Lots of hugs.
x