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

Thank you all so much, and thank you Kirstoll.

Technically, Joe should be home tonight, but I'm expecting that his potassium level will be low again because of his diarrhoea so we're going, prepared to stay. ahem had a lovely time last night. Stopped drinking when the room started spinning and by the time we left, I was fine.

I haven't had to get up in the night so that's either a very good thing, or Joe's room is going to be veeeeeeeeeeery dirty!!!

Our big boss and HR manager were out last night, so it was good to see them again and get to say thanks for what they're doing. They seem to think its a no-brainer but don't realise that not all employers would be bothered to try and accommodate this.

I'm so lucky to have them, and the nursery, and DH. If there is one person in the world I can absolutely rely on, it's him. It's his birthday soon... I really should get out and get him a card! .

DBil has shaved his head in solidarity with Joseph, bless his heart.

DBro and DN are coming over before Christmas. They live abroad and I haven't seen DBro in the flesh for 18 months. Joseph has never met his cousin so it will be nice for them to see each other. I just hope that Joe isn't in isolation when they come!

Trazzle glad you had a great night out - haven't had a good room spin myself in a while.

I think it's great that you have lots of support. It's really lovely to read about. Your family sound just wonderful too - brothers are brilliant! I love mine. He's ace.

Right, I'm hoping for high potassium today.

So glad everyone is being supportive, it's lovely to read about. Your employers are obviously human!
Hope J had a good night.

Glad you had a good time. It's heart warming to hear nice tales about businesses.

How lovely of dBIL. What does Joseph think? Is he pleased?

Just wanted to say dd has an ear infection that I totally missed. I thought it was teething so you're not alone on that one.

X

So good to hear of all the RL folk rallying round and being great; warms your cockles

Great to hear of room spinning. What you needed. And even the hangover..if you had one.

Hope you get out and all is going well and what a family.

Great that you had a good night out (hope hangover is gone by now!).

How has today been? Does Joe have to stay tonight, how is he feeling? Are his tests all finished or does he have more in the next day or so? When does his next chemo cycle start?

Have a to help with the hangover in case it hasn't worn off yet ...

Hey Trazzles so fab to hear you were able to have a night out and brilliant stuff about dbil, your db's visit and helpful employers.

Hope hospital get on top of diarrheoa situation soon x

Glad you had a therapeutic night out, faith in human nature somewhat restored by actions of your employers and the nursery, so glad the family support is there too. Really hope Joe is home soon. X

Light still on in Barcelona. Thinking of you.

Really glad you had a good night out and have great RL people around you. Hope you had lots of laughs and a few hours away from worry.

Hey, sorry to have been away, been a bit busy. No real hangover on Friday - I don't drink often and hate feeling drunk so as soon as I felt wibbly, I stopped and was responsible enough to hold my friend's hair back while she chundered before we left . Have been a right mardy cow since then though, getting stroppy with my favourite nurse on Friday because our appointment location had changed (literally only a ride in a lift away...).

Still, DS' blood results were sufficiently ok for us to come home on Friday as usual. He's still not eating anything and, without being too graphic, everything coming out is still liquid. But then, everything going in is liquid so I'm assuming that we can't really expect anything else, no? He's been bright enough the past 2 days to be getting under my skin so he must be feeling better.

He also keeps asking me to sing along to our various Disney films, which he hates me doing when he's feeling rough. At bedtime tonight he asked if I have any birthday cards for him to sign and got very excited when he found out DH has a birthday cake (fireman Sam!) AND candles for us to have tomorrow... DS will be in hospital for the actual day so it will be good to celebrate a bit tomorrow. And we're hoping for a night out at the cinema next weekend

Sorry you feel that way but hopefully it will pass. You have a lot on your plate so it's hardly surprising there's an effect on your moods.

Hope your DH enjoys his birthday - we had a Fireman Sam cake a few weeks ago here too & it went down well.

Hope the birthday went well.

I'm not surprised you're being a cowbag (though you probably think that you are ten times more than others do). Your emotional rollercoaster must be the equivalent of god knows how many conflicting hormones charging around you. It'd be odd if you weren't moody and touchy, I think.

Sending light and thoughts from Provence.

Thanks, yes, Joe was VERY excited about birthday cake and helping DH blow out the candles... Another reasonable day with a few more mouthfuls of food... I'm hoping his appetite doesn't come back tomorrow though as he's fasting for a general anaesthetic in the afternoon for a bone marrow sample. I am terrified of GAs and can't believe he's already had so many that I'm totally blasé about tomorrow well, ok, still a teeny bit scared and another hearing assessment.

This has been our first full weekend at home since September, I think!!! I'm starting to go a bit stir crazy though as I'm either at home or in hospital - not much chance to do anything else.

Oh and DD started crawling on Friday clever girl waited for me!

Well done to your gorgeous girl!! All the best for tomorrow.

Morning Trazzles

Lovely news about your dd crawling!!

And a belated happy birthday to your dh!

All mardy cowbag-ness completely normal (and understood and expected by nurses I should think) in circumstances.

Hope op goes well tomorrow. Thinking of you and yours as ever x

Oh, that's brilliant that your DD crawled when you were with her! As you say, clever girl.

Glad birthday celebration went so well. How lovely for all of you.

Hope all goes well with the bone marrow sample today.

Happy birthday to Joe, happy birthday to Joe, happy birthday from mumsnet, happy birthday to Joe.

( sung ad nauseam along with Disney)

And what a clever and emotionally intelligent girl.

Hope tomorrow goes well.

Oops -DH's birthday, not Joe's, but thanks anyway!!

Bone marrow went fine, Joe woke up from the anaesthetic not even complaining of pain! Just desperate for a ham sandwich that's my boy .

Ultrasound and more chemo on weds and then results on Friday .

Apparently there was an Inside Story on in London tonight about neuroblastoma. Am going to try and check it out on iPlayer.

Glad the BM went ok. And God love him. A ham sandwich. Brilliant.

Hope Wednesday goes well. And I'll be lighting my candle and crossing my fingers for Friday.

Evening / morning Trazzle
My DS turned 4 last week and we had a Fireman Sam cake, I'm assured it was tasty

I noticed the BBC news feed saying about the programme but I have been manic here today (builders removing roof = the shifty-family moving out to my parents )

From what I saw: it was about the treatment in Germany, costs £65k, and it's a postcode lottery if your PCT pays. A little boy was refused funding, parents raised the money, and the fabulous little man is now in remission.

There is a charity that raises the money for children who are rejected by their PCT.

Maybe we should all start donating? I know I'm going to.

Glad the bone marrow went well & all the best for tomorrow & Friday.

Good luck for tomorrow and Friday.

Very much hope on good news this Friday. Must be so stressful having to wait for the results.

Good that Joe had no problems with the bone marrow test. Hopefully the fact that he wanted a ham sandwich means he has started to eat again.

Thinking of you all.