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

[Four4me]

Yeah Mini-Trazzle gets to basecamp!!!!!! Xxx

[Sagelyhaunting]

:) glad you are all home x

[RaspberryLemonPavlova]

A splodge of light from Cumbria, trazzle.

Enjoy your time at home.

[HedgeHogGroup]

Hi Trazzle, I've been following your thread since last week and thought I'd give Spiro a job adding a splodge from Liverpool.
I can't imagine what you're going through but hope you know that the thoughts (and prayers) of people around the world will see you through.

Good luck xxxx

[thewhistler]

Glad you both got home and hope it is doing you a power of good.

[Milliways]

I have been lurking and praying here, but today I saw a friends FB status that I had to share with you. A little boy just given the all clear from Stage 4 Neuroblastoma diagnosed in 2011

here is his FB page

[Clara35]

Hi Trazzle, I have been following your threads & wanted to send a splodge of light from Belfast. Hope you had a peaceful day at home xoxo

[DawnOfTheDee]

Just found the new thread yes I'm a bit slow... Big fat splodge here in Leeds.

Glad to hear you're all home - it makes such a big difference doesn't it?

Btw, tell your friend that if you mix 5 tbsp mustard, 2 raw eggs, some prune juice, 3 anchovies and a big dollop of curry sauce together then down it it'll instantly stop you being an insensitive arsehole. Fact.

[DawnOfTheDee]

Big fat splodge of light I meant. Though looking at me it's an easy mistake to make.....

[Trazzletoes]

Oh Dawn, you dafty :D

Thanks for all the positive stories of children beating this bastard disease. They have such strength.

DS has had an ok day - very tired and lethargic. I may call the hospital in the morning if he hasn't perked up to see whether they checked for anaemia before he was discharged...

I'm getting word perfect on The Lion King, but I used to work at The Disney Store so it's not exactly torture for me! We got some smiles and the occasional laugh out of him today which was just wonderful. I was reading a book to him to help children understand cancer (thanks Rhubarb) and the little boy lost his hair. I asked DS how he would feel if he lost his hair and he said it would make him very sad . I need to get on with learning to crochet so I can make him some funky-ass hats!

At least I've been able to give him his meds through his ng tube which is a squazillion times easier than previously.

He's normally very much a daddy's boy but has latched on to me these past few days, which is lovely for me but tough going for DH who can barely get a hug at the moment, let alone a bedtime story :(.

Buffy twas a v good plan but I dropped Dd's last feed just after the diagnosis because I couldn't guarantee being around to feed her with any regularity. Yes, he can eat solids, but at the moment the tube makes him cough and sneeze (which he says hurts) when he has anything substantial. Ta also for the offer of the console but DH also has an old one - DS currently doesnt have the co-ordination to manage one :D

[Sirzy]

Trazzle - if you want hats making then put a shout out to MNers! I can't help because my attempts at hats would probably end up as scarves but I am sure plenty will be willing to make some funky-ass hats for him!

[Trazzletoes]

Oh, and there has been good news today too. A friend's brother fell down a flight of stairs 4 years ago and damaged his spinal cord. He lost all use of his legs and hands. It was fairly unlikely he would ever regain use of his limbs. He seems to be fairly bloody-minded and determined though, and this week my friend posted a video of him walking across a room with help. They are the first steps he has taken in 4 years. He is awesome.

It's reminded me that incredible things do happen. Anything is possible.

[Trazzletoes]

Honestly, sirzy the MN community has already been very extremely generous to us Trazzles. I couldnt/ wouldn't ask for anything more.

[IwishIwasmoreorganised]

What great news about your friends brother.

Amazing things can and do happen. This is perfect timing to remind us all of that.

Please do ask Trazzle for anything that anyone might be able to help with while you are all fighting this. I'm not able to produce anything anywhere near a funky hat, but would live to help in any other way that I might be able to - postcard or present to your ds or your dd, practical help like a supermarket delivery, whatever.

Please do just ask, there's lots of us out here to share things out amongst.

Xx

[NorksAreMessy]

If tiddlytrazzle's hair DOES go...you can guarantee a lorry load of amazing hats will be coming your way.
I am thinking Viking, lumberjack, cowboy, beanie, beret, rasta the list is looooooong and jolly.
Stephen Fry calls them a 'head joy' :)

You are sounding so strong and positive, but you do know you are allowed to sound pissed off as well? We will still hold your hand.

Love and light xxxxx

[Trazzletoes]

Norks it is definitely going. 100% certain. They use SERIOUS drugs against this shit. He WILL be sterile. He WILL lose his hair and his bone marrow WILL be destroyed.

Hearing loss, kidney and heart damage are possibilities.

Believe me, I am angry.

[thewhistler]

Lots if people would love to do hats, of all sorts. I'm hopeless but can just about do a beanie. Having fun soft hats to choose from might be good. A friend says soft is really important. Silk Pirate bandanas could be a possibility.

[JustSpidero]

Debenhams have a lovely soft Gruffalo hat and mittens set at the moment if he's a fan of the books.

[123caughtaflea]

Trazzle, you are allowed to be angry. Please be angry.

I have lit a candle for justified anger tonight . . . not sure it makes sense, but there you are:

www.gratefulness.org/candles (group = TT)

[KnottyLocks]

Checking in with a splodge.

We have a woolly army, my lovely.

Hats are no problem at all

[Trazzletoes]

Just I've found and when I've finished my online food shop I'm ordering it! Beautiful!

123 I am angry but if I let myself give in to it, I will go completely to pieces. I can't let myself go or I will be so broken that I won't be able to put myself back together and then what good will I be to DS?

[Trazzletoes]

Ordered them hope he loves them as much as I think he will... he ADORES the Gruffalo... will need to catch him while he is in the right mood, I think... too excited!

[onedev]

Gruffalo is ace, I'm sure he'll love them

[thewhistler]

Really hope he loves them.

Really sorry too about the implications. In a more minor way have been through this with our Ds and some of the long term issues are the same. And completely agree that you feel you can't let a chink in, because the structure will disintegrate. But it means that you need to cherish yourself more, iyswim, to keep things going and maintain that precarious balance.

Hope today is a good one.

[crashdoll]

Trazzle, I have been following your threads and I just wanted to be another friendly face screen name sending love. I'd love to send both your mini-Trazzles a little something if you feel comfortable sending your address but obviously, I completely understand if you don't. Also, wondered if you'd heard of //www.postpals.co.uk DS and DD can get sent cards and gifts and you don't have to give your home addy either. Another thing is, have you heard of wiggly bags? There's a group on FB who make bags for the tubes from the line in the chest and the bottom of the NG tube to go in. Anyway, hope today is kind to you and the rest of the Trazzles. All the best! x