Mumsnetters aren't necessarily qualified to help if your child is unwell. If you have any serious medical concerns, we would urge you to consult your GP.

High dose chemo and beyond. Onwards and upwards hopefully!

(1000 Posts)
Trazzletoes Mon 25-Feb-13 21:42:02

Another continuation thread for Joseph's ongoing fight against the aggressive cancer, neuroblastoma.

dikkertjedap Wed 27-Feb-13 09:04:31

Hope you have all managed to get some sleep and that today will be a better day for the Trazzles.

Also, hope that you can find a replacement for your chocolate (not sure what it could be though).

thanks and a brew

WheresMyCow Wed 27-Feb-13 09:09:00

Trazzle, have been lurking since Joe first became ill, but not posted since then.

Have some (((hugs))) for you all (but just gentle ones for Joe if he's hurting sad ) and splodging and crossing gingers from West Lancs x

Kalypso Wed 27-Feb-13 10:20:19

I hope you all had a peaceful night and got some rest. I am full of admiration for the way you are coping with the constant adrenaline which much be surging through you, and also helping Joe through this at the same time. When your mind starts playing on the what-ifs, try your hardest to re-focus on just getting through the day and don't allow thoughts to wander onto tomorrow and beyond. Of course, it's so easy to say that, isn't it? Sounds like you have a good distraction in the crocheting.
My grandmother-in-law used crochet to relieve stress (her youngest child had a bad illness when he was a baby). Consequently, all members of the family each have several gorgeous crocheted blankets. When I see my DS enjoying lying on them pointing out all the colours and patterns, and hearing all about his great nanny who made them, it's somehow quite nice to think that something beautiful came out of what was a very difficult time for her.

Regarding drinking and eating, I have experience of NOT doing this: my DS was ill in hospital with a weird virus. Unlike you, we easily had the opportunity to eat and drink, as DS was only 13 months at the time and didn't pay much attention to what we were doing, but we didn't because we were flapping over DS, and subsequently we both collapsed at different times, admittedly partly because we also had the virus, but mostly because we just didn't take care of ourselves. Poor DS then had to spend a night away from me while I was in another part of the hospital attached to a drop. A couple of nights later, the same happened to DH.

I know yours is a completely different situation, not least because you're clearly NOT flapping like we did, and also have a bloody good excuse for not drinking bearing in mind it upsets Joe, but I agree that you MUST somehow keep drinking, even if you have to pretend to drop something under Joe's bed, bend down and grab a few gulps from a bottle hidden there! (gulp quietly or make a noise while you're doing it!) You can tell him that you are just getting very clumsy because you are so tired!

Anyway, I am wittering on. Thinking of you, your family and of course, lovely Joe.

VenetiaLanyon Wed 27-Feb-13 11:04:25

You're being so brave, all of your family. Poor little Joe; hope the neurophils are still on the up and glad the crochet's coming on a treat...

Thumbwitch Wed 27-Feb-13 12:38:28

Oh Trazzle - that's so hard. One step forward and two steps back - so often the way with this sort of treatment - but at some point it will change.

Can Joe not even have ice chips? Agree you have to find a way to have a drink, even if it is surreptitious under-the-bed sort of thing. How do you get to go to the loo?

Light splodges, prayers and love from Aus. xx

RatherBeOnThePiste Wed 27-Feb-13 14:48:15

Afternoon assorted lovely Trazzle folk.

Hand holding here. Gentle but big hugs and lots of love Xx

Lovely, kind, funny, dedicated Trazzle you sound so tired and dejected <squeeze>

I'm really sorry that it's getting harder.

Can someone look after DD for an hour for you and DH to have an hour in the hospital canteen together with a picnic, when Joe's asleep?

Do you have a camelbac? I had a dream about you drinking using one last night <odd dream alert> (which is odd as I have no idea what you look like but it was definitely you and you were visiting me in the isolation room I was in when I had swine flu, drinking an isotonic drink whilst checking for my DS's heartbeat in my huge pregnant tummy). Anyway, to Joe a camelbac will look like you've got a feeding tube from a rucksack and you'll be able to stay hydrated.

<goes off to think about chocolate replacements>

If there is anything we can do to help you please say.

Splodging away harder than ever for no VOD and further reserves of strength for you and your DH.

thewhistler Wed 27-Feb-13 18:44:36

Brilliant idea of feeding tube even if it goes into your mouth.

Mints?

If you can't down load on us, who can you down load on, and it is what we are here for.

Chunk it up, and remember that fear is often the thing that is worst. Along with uncertainty. If you can teach yourself to accept them, because they will happen come what may, it is easier. I feel you do that anyway, it's just a bad time.

When you look back, it will have been awful, but Joe won't remember most of it and you will remember being with him.

Agree, is there a rota who could play with dd and sit with Joe while DH and you see each other for an hour, even if only to cry or drink coffee?

Thinking and Splodging

Just checking in to send some love and best wishes for a gentle night

Me too, checking in x

Me too, checking in x

I'm sorry I haven't posted for a while. Still thinking about you all the time though, fingers crossed for an uneventful day x

dothraki Thu 28-Feb-13 07:55:55

Trazz - sending you all hugs and prayers x. At our hospital the childrens rooms have a little en-suite, do you have anything like that where you could leave lots of drinks, those wards get so blardy hot.

Hope yesterday was uneventful. Another day down.

toomuch2young Thu 28-Feb-13 08:10:41

Sending you more healing thoughts and positive vibes. Hoping his sore thumb is feeling better and his liver is doing ok,
Hope you have managed to sort drinking out.
Here's hoping today is uneventful and as ok as possible x

dikkertjedap Thu 28-Feb-13 09:11:22

Hope you all have had a good night.

Sending you lots of positive thoughts and wishes,

x

fraktion Thu 28-Feb-13 09:28:27

Found you again! Haven't been on for a few data but I've still been thinking if Joe and all the trazzle clan.

Sorry to hear Joe's thumb has gone manky and he might have the start of VOD sad Well done him for not sucking his thumb. I'm sure the cuddly toy is doing a great job looking after it.

The rucksack/feeding tube is a brilliant idea if you can get hold of one. I'm sure Joe would understand the parallel.

Splodges and cross gingers from where we are at the moment in Bucks.

N0tinmylife Thu 28-Feb-13 12:51:06

Still thinking of you all here. I hope Joe is doing OK today, and you are managing to look after yourself!

bobkate Thu 28-Feb-13 16:07:56

Checking in and splodging in the sunshine xx hope all ok with you all x

ToffeeWhirl Thu 28-Feb-13 16:53:12

Thinking of you. Hope all is well. X.

thinking of you today xxx

onedev Thu 28-Feb-13 19:29:15

Just checking in. Hope today wasn't too awful & at least it's another one almost gone. You will all get through this.

ninja Thu 28-Feb-13 20:04:51

Thinking of you as we'll, I'd been thinking of suggesting the camelback yesterday or maybe soup to eat.

Another day gone and I hope it was better. You must be exhausted x x

Waving hello and sending prayers and hugs.

Kalypso Thu 28-Feb-13 20:55:43

Also thinking of you and Joe. I really hope you've had an uneventful day and that you're all getting through okay. xx

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