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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

OP posts:
Are your children’s vaccines up to date?
ToffeeWhirl · 20/10/2012 17:34

I'm glad your DS had a good night and has been enjoying watching telly. I hope he has another good sleep tonight.

And good luck with BA.

Badvoc · 20/10/2012 17:58

Lovely news.
Thinking of you all here in Leicestershire xxxx

Leoboy · 20/10/2012 19:25

Fingerprint jewellery do cuff links, they also do something called little Picasso where your DS could draw a little picture, a smiley face or something and they put it on a key ring or necklace, not sure about cuff links though. He maybe a bit young to do that though?

IwishIwasmoreorganised · 20/10/2012 19:48

We used Smallprint too.

Our local lady was excellent and the necklace that we had made really is lovely. I have one of each ds's fingerprints on each side of it.

I think it's a great idea.

Thelobsterswife · 20/10/2012 20:03

Posted on other thread but didn't give location. Splodge of light from Northampton. Lighting a candle now. Glad Mini Trazzle has been on good form. Xxx

ComeIntoTheSpookyGardenMaud · 20/10/2012 20:03

Bit late to join the thread, but sending light from sarf London.

focuson · 20/10/2012 22:26

Trazzle, wee trazelle and co my heart and wishes and a Candle burning bright from hackney east Londonxxx

Trazzletoes · 20/10/2012 22:42

Thanks all - today has again been a better day. Each day brings a gradual improvement, which is good for all our spirits. This morning he finally got off the sofa and was playing with DH - fighting me off with his toy saw and chasing me around the kitchen! He tired himself out and had to recharge his batteries, but that's to be expected. As the chemo fades in to the distance and his nightly feeds are increasing, he's coming back in to his own a little bit and we are getting his character poking through again. I hadn't realised quite how much I missed him.

The feeds are going well - can't remember whether I've already mentioned he was sick this morning, but he rallied straight away and fortunately his ng tube stayed put - I'm terrified of him vomming it up!

He even made our pudding tonight - banoffee pie. It was yum and he managed a couple of mouthfuls. It's lovely to see his cheeky grin...

As for BA. Well. I guess that they get calls like mine a lot, but it's really not nice to have someone bluntly say: well, you should have bought travel insurance then, shouldn't you? When I pointed out that we'd been saving for the flights and didn't have the spare cash to buy the travel insurance there and then I would have thought that they could have come up with a more compassionate response than: well, these things are usually bought at the same time.

Anyway, having got nowhere at all with BA - their offer is to refund a little bit of the tax so we basically get back a quarter of what we paid for the flights because we bought non-refundable tickets. I know, I know, don't say it...

They suggested I speak to my credit card provider who politely informed me that I should have bought travel insurance. NO S**T!

Was just about to call BA back and beg and beg whilst pointing out that they have 8 MONTHS in which to resell our seats... when DH (may the odds be ever in his favour) suddenly remembered that we have a silly bank account that we have to pay for (it gets us money off our life insurance) that also came with... wait for it... TRAVEL INSURANCE! WHOOP WHOOP! Quick call to them - yes, we would be covered if our GP confirms that treatment will be ongoing next summer and DS can't travel...

Thank God for stupid bank accounts that come with daft extras that you never use Grin. I pretty much cried with happiness. This is what my life has become! Tears because we haven't actually lost our savings for the past year or so. Not sure how we are going to break it to DS that he isn't going to go on a fast aeroplane to visit his Uncle, Aunt and Cousin next year though. He is SO excited. We live by an airport so he sees the planes constantly and is always going on about it. Maybe if we just ignore it, it might go away? It's a long time away, right?!

Oh, and DS' Little Hug arrived today. It's beautiful. He loves it. Every time he sits on the sofa (a lot!) he asks for it. It's perfect.

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123caughtaflea · 20/10/2012 22:52

Sending light to the good times . . . may the improvement continue.

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

THERhubarb · 20/10/2012 22:56

Sending virtual hugs to you all. I only wish I had a magic wand xxx

WhoKnowsWhereTheTimeGoes · 20/10/2012 22:57

What a relief about the insurance. I'm glad DS has perked up a bit this last couple of days it must do him the world of good having some time to just be normal in between treatments. I saw the Little hug photo on the Woolyhugs facebook page, that is something to treasure. Hope you all have a good night and a nice day tomorrow.

BuffyFairy · 20/10/2012 23:18

I'm so happy you've had a lovely day and that ds' cheeky spirit is coming back.

I saw his little hug on the Facebook page too and it's gorgeous.

Great news about the insurance. It's the only reason I pay for my bank a/c. Any chance they could visit the uk? You could take ds on a simulator flight or is he not as gullible as I was?

I know it's not the same by far.

Don't use silver imprints. I had to wait ages and then they sent the wrong order. It's a lovely idea.

ToffeeWhirl · 20/10/2012 23:53

Can't believe BA are so heartless (well, actually, I can), but hurray for bank accounts with extras! I'm so pleased MiniTrazzle had such a good day today and even managed some banoffee pie.

Chippychop · 21/10/2012 00:58

Glad there is some positive rays shining on you, you can have all my rainbows and pots of gold as long as mini trazzle continues to smile xxx

ChippingInLovesAutumn · 21/10/2012 01:09

Heartless bastards aren't they Angry It's not as though they'd even be losing any money this far in advance. I could even understand them asking you for a Drs letter or whatever, but a flat out 'tough shit' is just crap.

I'm pleased that your 'stupid' bank account has earned itself some gold stars & you will get your refund! If you possibly can, lock it up in an investment so it's there when DS is up to travelling and you can go at the drop of a hat then :)

It's great that DS is getting some of his energy back and seeming more himself :)

I wouldn't tell him you have cancelled it, let him carry on believing it's all going ahead - he's too young to understand how long he might be unwell for and it's not something he needs to think about anyway. When the time comes he'll either be unwell due to the treatment and will understand why you can't go right now, or he'll be well enough to travel and you can re-book. No point in upsetting him over it at the moment. Put it in the Santa Claus/Tooth Fairy 'nice lies' box x

MacAndCheese · 21/10/2012 01:23

Hello trazzle I've been lurking but send my best wishes & lots of positive thoughts your way for all of you. :)

Thanks

I noticed up thread that you said Mini Trazzle likes the Gruffalo? I found this just now. I thought you might like to take a look. Not particularly helpful, but there are lots of things on there your DS might like. I quite like the socks! Blush

Trazzletoes · 21/10/2012 04:07

Ugh. DS has had an unsettled night so far, culminating in throwing up twice so he has no benefit of his night feed tomorrow. He is literally skin and bone already. I'm so scared.

We've also run out of bedding for him, but that's ok because when we put him down this time, he demanded his Little Hug instead of his duvet. It was so wonderful to see him wrapped up in it.

Can't sleep though for worrying how we can get him to put on weight if he can't keep his night feeds down.

I'm starting to wobble a little bit.

I'm scared. Really really scared.

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BarmeeMarmee · 21/10/2012 06:07

Trazzle you are allowed to wobble and be scared-you wouldn't be human if you didn't. Sorry to hear mini trazzle has been unsettled-has he settled now? Hopefully so and you are all getting some rest. There are bound to be some times when he's sick and can't tolerate his food but the hospital should be able to monitor/advise. And he had such a lovely time today from what you said! Hopefully it's a "blip" and tomorrow will be good too and he'll be back to tolerating his foods again.

Sending you all unmumsnetty hugs through the dark, my splodge of light is shining brightly for you.

tholeon · 21/10/2012 06:30

You poor thing, four am is a horrible time to be awake, thinking scary thoughts.

How was the rest if your night?

You are allowed to wobble and will need to, sometimes.

Re the big aeroplane ride, that is sad, but he is a little boy, and perhaps there are other more local, lovely treats that would also make him happy.
Virtual hug x

gordonpym · 21/10/2012 06:34

I know, Trazzle. It's normal to be. But the weight will come back, then go and come back. I remember my friend's DD being so skinny she looked like a little bird, and now six years later, she's tall and so beautiful. You would never tell. It's a long and horrible road to recovery. But you're proving to be such a wonderful mother and together you'll get trough.
And don't worry about the cancelled (and refunded ) trip, there will be others and they'll have an added flavor! Focus on them. And Mini-Trazzle can understand. It may even be a goal. "We have to get rid of that illness, we have plans".
You can't travel now, but we, Mumsnetter spread around the world or England" , could send you postcards you could pin to the wall, and then play games with your lovely DS. PM me if you think it may help.
A big hug from Barcelona (pouring rain this morning!!)

SarahJinx · 21/10/2012 07:20

Hi Trazzles, a bit of a sleepy splodge of light from the fens here for you and your beautiful boy.

Love to think of him wearing a hug, don't forget that you're wearing a hug too, we're here whenever you need.

notonthehighstreet.com do loads of beautiful things, including fingerprint jewellery and other lovely personalised stuff.

Badvoc · 21/10/2012 08:33

Sorry to hear minit has been ill during the night...glad he is snuggled up now.
4am is a bitch.
Remember...at 4am everything is scary!
Thinking of you and praying for you all xxxx

ChippingInLovesAutumn · 21/10/2012 09:44

Oh my love, it is utterly miserable all around isn't it :( It is horrible being woken in the night at times like this as going back to sleep is so difficult, your mind just goes around and around. As Badvoc said - 4am is a bitch! & everything is even more scary.

MiniT's feeds are dense, the odd night of them not staying down is horrible for him (& you) but he will still be getting so much from the other nights.

I hope you have a nice day today
x

SHRIIIEEEKPoolingBearBlood · 21/10/2012 10:27

((Trazzle))

thewhistler · 21/10/2012 11:52

Hugs to you and Trazzleminor.

The three o'clock and four o'clock blues are well known. Nothing looks possible then. And you have so much to put up with. You'd be mad not to be upset.

But I would have thought that the feeds so far have been helping to improve underlying stamina. The example if the girl above sounds lovely.

Thinking of you.