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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?
NorksAreMessy · 30/10/2012 21:15

Just checking in to see how you all are.
Please don't let all this scary talk of us trying to help you put you off coming back for hand holding

Love and light

KnottyLocks · 30/10/2012 21:54

Hand to hold is here Smile

MrsMoosickle · 30/10/2012 22:37

Hi Trazzle, how was last night? Hope you all got some sleep and that today has been a bright day. It's pouring in Glasgow but the wee splodge of light is still shining.

Mrs M xx

bonnieslilsister · 30/10/2012 22:38

Would love to help Smile

Trazzletoes · 30/10/2012 22:58

You guys! Honestly!

Thank you all very extremely much for your kind offers of financial support, but no.

DH and I are extremely fortunate to have a good income. The fact that we live to our means does not mean that you should work hard to subsidise our lifestyle! The bills are getting paid, it's just a tight couple of months, that's all, and they happen to coincide with Christmas.

Santa will still be visiting our children. It's just that DH and I prob won't exchange presents. That's fine, we're grown ups and all we really want is family, anyway.

DM is stepping in with a tree, obviously we already have decorations...

No point in spending on a turkey in case we have to leave for hospital halfway through preparation. A roast chicken will be loads cheaper just as nice.

And as for a cleaner. Thank you loads but honestly - I've coped a lot better today. I'm not feeling so overwhelmed. The place is untidy, which doesn't help, and a cleaner won't be able to do anything about that. I just need to start picking up after myself. I'm getting there.

If DS relapses then we may have to raise anything from £150,000 to £300,000 for treatment I would MUCH rather save goodwill for that. Relapse rate is high so it's a real possibility, or if this current treatment doesn't work.

Had a lovely visit from school friend today. Also yet another unscheduled visit to the hospital as DS has come out in another itchy rash. It is most likely the same as the first rash and therefore a reaction to one of the chemo drugs.

DS has been ok today. Epic tantrum first thing but calmed down a lot after that and has been cute for most of the rest of the time.

I'm off to grab some sleep before administering more meds at midnight.

Thank you again. Your generosity is greatly appreciated, but I just couldn't. And neither could DH.

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ToffeeWhirl · 30/10/2012 23:42

Have you been told about the immunotherapy available for preventing relapse, Trazzle? There was something in the Blush Mail Online about it recently - it caught my eye because a family were fundraising for their little boy to be given the treatment in the USA. I donated through the Neuroblastoma Society JustGiving page (couldn't pass it by, especially after hearing what you are going through).

I'm sure I am not the only Mumsnetter who would be more than happy to help with that or anything else that's necessary.

Glad you had the support of a good friend today.

onedev · 31/10/2012 06:13

Still splodging on a dark morning in Solihull. Glad yesterday was better (minus hospital visit) & hope today goes ok.

Trazzletoes · 31/10/2012 07:16

Toffee, I only know what ive seen on the internet. The drugs in the USA aren't all available here on the nhs. Joseph is in a clinical trial for the immunotherapy if we get that far so he may get the standard drugs, he may get different ones...

It's a hell of a lot of money.

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fraktion · 31/10/2012 08:04

Sending a big splodge from Normandy

I've just read through this - I think I've read some before but was probably interrupted before posting - and I've alternated between tearing up and smiling as you describe your lovely little boy. He's a fighter - he's the good knight who is going slay the cancer dragon. Thank you for sharing :)

Thinking of you xxx

RatherBeOnThePiste · 31/10/2012 08:15

Morning lovely newest member of Team Hooker. Thinking of you and Joseph here

Hugs and a big splodge from SW London

Pistey x

SHRIIIEEEKPoolingBearBlood · 31/10/2012 08:27

Right, if that is genuinely how you feel then we can't argue with that :)
And given you've said you'll take our money (quite rightly!) if your DS relapses I really really hope I NEVER give you money.
I'm sorry. I come on your thread being flippant, and you are going through such a rough time thinking about the current treatment and chances of relapse. I wish there was somehing I could actually do. But short of going back to university and training very quickly to be the absolute best children's cancer specialist in the world I can't think of anything.

BuffyFairy · 31/10/2012 09:04

Ah Trazzle I view it more as being able to help with something practical rather than subsidising your lifestyle. It's not giving you money, it's giving you time. I wish I lived close enough to pop in and lend a hand.

I pray he doesn't relapse. If it does come to that I will of course throw myself into fundraising.

I'm glad you're feeling a bit better about it all. I hate it when the housework gets on top on you and I have no excuse!

Shame Joseph has a rash again.

Splodge burning brightly for you xx

Trazzletoes · 31/10/2012 09:24

By January we will be fine, once benefits are sorted and all the other bits and pieces are in place. We've cut back on various things like gym membership but wont really see the spare cash til the new year. It's all fine, we might well be able to get a cleaner in the new year - ill certainly be gunning for one!

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tholeon · 31/10/2012 09:29

Ok, I think it would make a lot of us feel better to be able to help in a practical way but our feelings are not important, yours are. Will keep on with the Surrey lights x

dikkertjedap · 31/10/2012 10:38

Hope the rash has been dealt with and he is not itching too much.

Good that he has the energy to get into a tantrum.

Of course we will all respect your decision, but do not feel you have to stick to it if things change. This is not about subsidising your lifestyle, you have suddenly been thrown in an incredible difficult position which nobody could have foreseen and which you therefore could not possibly have budgeted for.

I hope that you all have a good day today without any need for hospital visits.

Woolfey · 31/10/2012 11:11

This reply has been deleted

Message withdrawn at poster's request.

ChippingInLovesAutumn · 31/10/2012 19:05

Trazzle - why would you have to raise the funds if DS were to have a replapse? Is it because you'd have to go to the USA - wouldn't the NHS be able to do anything at all? I hope never to have to do it, but if it comes to it, lots & lots of us will do all we can to help you raise that money x

StinkyGOLDfeet · 31/10/2012 19:34

Trazzle, have you had the Clic Sargent grant? It's not means tested and every family with a child diagnosed with cancer is entitled to it. It comes through really quickly as well - within a week IIRC.

Clic Sargent

Trazzletoes · 31/10/2012 20:00

Stinky yes thanks, already in the bank. Also here in Yorkshire we get a grant from the incredible Candlelighters too.

It seems the NHS don't cater for relapses so I think we would need to raise funds. I need to check with his Dr. DH is talking about selling the house

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SHRIIIEEEKPoolingBearBlood · 31/10/2012 20:03

NHS don't cater for relapses
In young children???
Someone tell me that isn't true?

Trazzletoes · 31/10/2012 20:06

SPB not for neuroblastoma I don't think. It has to be cost-effective, doesn't it.

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SHRIIIEEEKPoolingBearBlood · 31/10/2012 20:08

:(
Don't know what to say...

NatashaBee · 31/10/2012 20:22

This reply has been deleted

Message withdrawn at poster's request.

thewhistler · 31/10/2012 20:23

OMG, Trazzle. I don't know what to say either. But thinking of you..

dikkertjedap · 31/10/2012 20:24

Of course we all hope so much that this situation doesn't occur, but in case there is a relapse you probably already know that apart from a number of clinical trials in the United States, there are also trials ongoing in Germany.

I could post a link but I am just not sure whether that would be helpful or not, also I expect that his consultants have attended the Neuroblastoma conference in Germany this year where all the latest trials were discussed, so they should be able to judge whether Germany is a viable alternative to the United States or not.

As we speak there is lots and lots of research going on on neuroblastoma and changes to trials are being made wherever possible to include the latest information. It is not how it was 5 or 10 years ago. Researchers exchange information all the time.