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Mini-trazzle and his candles vs. neuroblastoma

998 replies

Trazzletoes · 15/10/2012 22:53

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 Grin

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Are your children’s vaccines up to date?
Badvoc · 26/10/2012 11:32

Wishing you all well for today x

Trazzletoes · 26/10/2012 12:51

To be fair Pistey I've only tried straight rows of double and treble. The idea of doing a granny square terrifies me somewhat...

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KnottyLocks · 26/10/2012 13:00

If you can go trebles, you can do a granny square Smile

Seasy!

RatherBeOnThePiste · 26/10/2012 13:06

I found going round and round easier than lines. And I am talking crochet here Smile Catherine Hirst taught me, bless her, patience of a saint that one Grin

KnottyLocks · 26/10/2012 13:24

She needed to have Smile

dikkertjedap · 26/10/2012 13:57

Sounds like it was the booster you needed to speak to the other NB mum. You are absolutely right, so much has changed in the last five years, many trials are ongoing and the information which comes out of them is fed through in other trials really quickly.

Lovely to hear how well your DS is doing!

Hope you can all go home soon.

thewhistler · 26/10/2012 15:44

Brilliant news about the giggles, the eating, the chemo and the nb stats. Things change so much so fast in the medical arena. When I was growing up both prostate and breast were fast, whereas now, caught fast they are curable or chronic. And globalisation has helped hugely in sharing treatments worldwide. In the immuno world we knew the same is true. So I hope you have a lovely weekend with lots of mummy cuddles.

NorksAreMessy · 26/10/2012 22:13

JuSt checking in with this evenings delivery of love, light and all good wishes.

Thanks
Trazzletoes · 26/10/2012 23:39

Hi, DS has had another reasonable day today, fuelled mainly by sausage rolls and Maryland cookies Grin. Apparently the children tend to tolerate each cycle of chemo better. I wish they'd told me that before(!) as I was expecting him to go steadily downhill!!! His appetite has slowed a bit but that's not necessarily a bad thing.

My knuckles are red raw. I have no hand cream so have resorted to a spare tube of Lansinoh. Ow.

DS' naughtiness has carried on today, but he's realising that we won't let him get away with murder just because he's in hospital and feels rubbish. It doesn't help that the other boys who have been in our bay have been kicking everyone in sight and saying things that I don't think are great for DS to hear constantly for a week . One called his dad a turdbrain today and his dad just laughed, for example, so to some extent I think DS is trying his luck.

Happily he loves his gruffalo hat and gloves (thanks for the tip!) and has been putting them on and rrrrrrrrrraaaaaaaaarrrrrrrring all afternoon.

I also have some thank toys but I can't remember who to do will try and PM you all.

In much much sadder news, there are I think 4 children being treated at the hospital with neuroblastoma and one of them tragically passed away this afternoon. He was younger than DS. I didn't really know his family too well but I think he had a very bad infection.

It's utterly terrifying and I can't imagine what his family are going through. It's so bloody unfair. DS is getting an extra big squishy cuddle tomorrow whether he likes it or not and I am thanking my lucky stars that we still have hope.

DD came to visit today and it was lovely to have some special time with her too. And DS asked me for snuggles a couple of times. How could I refuse? Well, I couldn't, of course!

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ToffeeWhirl · 26/10/2012 23:39

Hope today went ok, Trazzle.

ToffeeWhirl · 26/10/2012 23:45

X-posted! Good to hear your news and that the chemo will get easier, not harder. How difficult for you to have to manage your DS's behaviour on top of everything else when all you want to do is cuddle him. Hopefully, it's a good sign that he's feeling up to being cheeky though.

I am very sorry to hear of the other family Sad.

Hope you manage a restful(ish) night (not sure how likely that is on the ward) and that it includes snuggles with MiniT.

Trazzletoes · 26/10/2012 23:47

Knotty you haven't seen my trebles... They are denser than my doubles and look nothing like the picture in my book Confused

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Trazzletoes · 26/10/2012 23:48

Toffee, I'm in my own bed tonight. DS is hopefully being discharged late tomorrow night. Night - so I can enjoy my comfy big bed.

Zzzzzzzzzzzzzzzzzzzz.

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ToffeeWhirl · 26/10/2012 23:52

Oh good for you! Sleep well.

thewhistler · 27/10/2012 00:28

Have a lovely weekend with lots of squash cuddles.

thewhistler · 27/10/2012 00:36

Squishy, not vegetable..

And hope you get some rest.

SHRIIIEEEKPoolingBearBlood · 27/10/2012 07:03

How's he doing today?

KnottyLocks · 27/10/2012 09:30

Hope you managed to get some rest last night.

Thinking of you all x

tholeon · 27/10/2012 09:32

You are defo doing the right thing trying to discipline him as normal, am sure he needs that for his own sense of security. Tough though. So sorry about the other little one.

I remember the hospital red raw hand thing well. Get one of the many people desperate to help to get you some posh hand cream. I would if I knew where you were...

RatherBeOnThePiste · 27/10/2012 10:31
Brew Morning, hope you had good sleep in your own bed, my thoughts are with you all X
Trazzletoes · 27/10/2012 11:10

News from DH I'm trying to sound calm but am crying with rage which I know is an inappropriate response, esp given the trials that other people are facing is that, instead of the time decreasing til DS can leave tonight, his treatment actually wont finish til gone 11 so I'm to stay in again. It's ok though because we can leave first thing . Grrrrrrrrrrrrrrrrrrr.

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BarmeeMarmee · 27/10/2012 11:46

Oh Trazzle how disappointing for you all. I'm not surprised you're feeling angry-all geared up for what you thought was happening and that's been taken away. I feel for you. Big splodge of light heading your way from Bucks still.

onedev · 27/10/2012 12:04

Sorry to hear that - no wonder you're upset. Hope today goes ok otherwise.

WhoKnowsWhereTheTimeGoes · 27/10/2012 12:35

OH no Trazzle how disappointing. i hope everything goes to plan today.

Re the handcream, I find Lansinoh is brilliant on mine but the stickiness is a problem, not suitable for quick daytime use. Especially not if you are trying to crochet. My favourite for when the skin is getting bad is Neutrogena. I guess you are having to use hospital soap, it might be worth getting something gentle of your own and taking that in with you? I find block soap better for my skin than even the supposedly gentler liquid ones. Are you having to use a lot of alcohol gel too?

dikkertjedap · 27/10/2012 13:26

Trazzle, I am not surprised you feel angry and upset, it is very disappointing as you are all so much looking forward to getting him home again. Why is it that he has to stay longer, does it have to do with the forgotten sodium drip or is it taking longer than anticipated for other reasons?

I hope it all goes well today and that at least he can go home tomorrow.

I found that for very dry sore hands, the Elizabeth Arden 8 hour cream skin protectant very good. It is a peachy colour and almost as sticky as Lansinoh. However, you only need to use very small amounts and it soaks in very quickly (you can also use it on your face). I put plastic disposable gloves on whilst it is soaking in. Not sure about your DS, you would have to ask the staff, but I was also able to use it on DD, in spite of her having extremely sensitive skin and breaking out in rashes really quickly.

Also, I found that the alcohol gel really dries your hands a lot, you can get Vicks First Defence hand foam which remains active for four hours at Boots/online pharmacies etc. The difference with other hand gels is that most hand gels kill the bacteria/viruses on your hand when you are applying but if you then touch something contaminated again you need to reapply. Vicks first defence hand guard creates a thin layer on your hands which keeps killing bacteria/viruses for up to four hours as long as you don't wash hand/put hand cream on etc.