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Mini-trazzle and his candles vs. neuroblastoma

(999 Posts)
Trazzletoes Mon 15-Oct-12 22:53:18

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

dikkertjedap Mon 26-Nov-12 19:36:59

I hope you are feeling a bit better today and that Joe's chemo is going according to plan.

It is not surprising that you are feeling run down - try to be kind to yourself.

It is hard that Joe hits you and is not responding to discipline.

It could be ordinary three year old behaviour testing boundaries, but it could equally be his way of dealing with his life being turned upside down.

It is hard to be consistent with him in such a situation plus young kids will also pick up on your body language. If you say one thing, but your body is giving a different message (probably totally inadvertently) he will be picking up on that.

Nursery teachers often try to use a firm voice to get kids to do something, but if their body language is not in line with that, it won't work (or at least not with all of the kids).

ToffeeWhirl Tue 27-Nov-12 10:36:17

How are you today, Trazzles? And how is Chemo 6 going?

Trazzletoes Tue 27-Nov-12 21:04:00

Just popping by to say everything is going ok.

Joe managed to be at home, without an infection, til he went in on Sunday. He's had his chemo and we are all home tonight. I got a reasonable night's sleep last night. DM took DD's monitor in her room so I had no distractions grin apart from my own silly head trying to keep me awake.

I've finally finished my crochet square and also done the DLA application form. I swear they make these forms so complicated to make people decide that it's just not worth claiming!!!

We have been so lucky - the nursery has refunded us with 6 extra weeks when Joe was actually there, and our local NCT group has a meal rota. It's been an absolute godsend to come home to a meal that just has to be put on the hob - we don't even need to decide what we want to eat!

Very lucky indeed.

KnottyLocks Tue 27-Nov-12 21:31:57

Aren't people lovely smile

Apart from those who design the DLA forms obviously!

onedev Tue 27-Nov-12 21:39:28

Glad kindness is shining through smile

Hope things continue to look up.

BehindLockNumberNine Tue 27-Nov-12 21:45:03

Still thinking of you and yours. Hope things continue to go as well as they can x

PseudoBadger Tue 27-Nov-12 21:46:23

Still thinking of you all xx

thewhistler Tue 27-Nov-12 21:54:07

Your nursery and NCT group sound great.
Lights here in S London.

blizy Tue 27-Nov-12 22:16:19

Hi trazzle, I'm glad to hear Joe is doing well. It sounds like you have a wonderful support network in rl as well as on here.
My sip lodge is back shining in Glasgow for you and the rest of the trazzles.x

NorksAreTinselly Tue 27-Nov-12 22:48:39

Hooray for lovely people and a kiss for your mum.
Sending love and tumble dryer fluff from Malvern smile

narmada Tue 27-Nov-12 23:30:58

Really glad you are all doing ok. And hurray for your nursery/ NCT people. Stay strong x

Trazzletoes Wed 28-Nov-12 06:29:56

We were expecting Joe to be completely flattened by this chemo session (he has had it twice before and would just lie on the bed with the tv on not interested in doing anything) but he has tolerated it much better this time. He's obviously not 100% but has been sitting up and playing with his stickers and colouring in etc.

It's been really lovely to see.

We also finally got his urine results back - neuroblastoma patients secrete, er, high levels of, erm, stuff (technical term!) in their urine so the test was to see whether the amount of stuff had reduced, which would mean, I think, that the cancer was also less potent(?!) as well as the tumour shrinking? I'm not explaining this well!

Anyway one of the things they test for... Had originally started off at 106 but has now gone down to 29 ( with 13 being the high end of the normal range) and the other one (drumroll please!) has gone from 92 to 11(!) with 7.5 being the top end of normal so, so far the chemo has been really effective.

Fingers tightly crossed for the rest of the treatment!

FivesAndNorks Wed 28-Nov-12 06:33:59

That sounds fantastic! Glad he's coped well with the chemo too.

onedev Wed 28-Nov-12 06:53:47

Fingers & toes tightly crossed. Well done Joe - he sounds amazing, as do the rest of you! grin

NorksAreTinselly Wed 28-Nov-12 06:58:53

Ave absolutely NO idea what he numbers mean, but even innumerate Norks can decipher low=good!
Hooray. Brilliant news and I will cross everything including my eyes.

thewhistler Wed 28-Nov-12 07:09:21

Trazzle, that's great, holding fingers and thumbs and touching wood etc and smiling hugely.

And lovely that he has had a bit more energy.

Honu Wed 28-Nov-12 07:12:52

Trazzle the DLA forms are an absolute nightmare! If you use the wrong word or phrase then it's a no-no. I seriously suggest going to the CAB where they have experts who will help you put things in the 'right' words. It is also incredibly depressing as you have to tell it the worst it is with no spirit-keeping-up optimism. DH and I are intelligent literate creatures but we went the CAB route and it was worth doing. Also suggest blue badge application.

Delighted the numbers are stacking up your way. Lights shining here for you.

KnottyLocks Wed 28-Nov-12 07:21:22

Oh bless him smile

Be prepared for those stickers appearing all over the house!

Great stuff about the numbers going down.

Sending big hugs x

BehindLockNumberNine Wed 28-Nov-12 07:31:45

Great news about the sticker-book-activity and the low urine test results. Low levels of stuff is good!!

Keeping everything crossed for you all here too x

Trazzletoes Wed 28-Nov-12 07:33:00

Honu - aren't they just. I suspect I may have been a bit too cheery... Filled it out with Social Worker though who was very helpful. I said I didn't think DS has mobility problems - SW helpfully pointed out that he does, as he is so shaky on his feet and doesn't go anywhere because he can't - ooops!

It's really hard to fill in though - of course he can't dress himself - he's 3!!! And a stroke of genius providing 2 boxes to fill in all his tests and their results, and then all his medication...

I really hope they grant it, I couldn't face doing it again!

VenetiaLanyon Wed 28-Nov-12 09:17:03

Great news re the impact of the chemo smile, and also great that he's tolerated it better - keeping all fingers crossed here!

dikkertjedap Wed 28-Nov-12 09:19:00

Lovely to hear that Joe is doing so well! smile

Great news about the test results! smile

I hope the DLA sorts it all out as smoothly as such an organisation is capable off.

Very nice from the nursery.

strictlycaballine Wed 28-Nov-12 09:35:09

Hi Trazzles just popping in mid-week to catch up and say "hello". Great that the chemo is proving so effective and that J is tolerating it better. Good luck with all the tedious form filling

Leaves out wine + corkscrew for tonight

ToffeeWhirl Wed 28-Nov-12 09:55:01

Lovely news about the chemo working, Trazzles, and your DS tolerating it so much better. Best of luck with the DLA form.

TeaMakesItToTheTop Wed 28-Nov-12 10:49:31

<ahem> There appears to be a speck of dust in my eye.

What a lovely, lovely nursery manager and what wonderful NCT friends you have.

And OMG the results! Great to see things on the right track.

I shall be buying a new MiniTrazzle candle today ... I've gone and finished the last!

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