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Original poster

Joseph's ongoing journey with Neuroblastoma

997 replies

Trazzletoes · 13/05/2013 22:24

I've lost count of the thread number now, but my 3 year old DS, Joseph, was diagnosed with an aggressive cancer called neuroblastoma last year.

Part-way through treatment he has relapsed (currently still clarifying that, but it's almost guaranteed) and at that point long-term survival is less than 5%.

He is beautiful and wonderful.

OP posts:
Original poster
Trazzletoes · 17/07/2013 06:00

chipping he works here part-time. And is very busy. If everything needed to be dropped for him to come and speak to us, he would. No one had seen him yesterday so I suspect he wasn't in. We will catch up when he has the opportunity but he also needs time to work out a plan, go through scans with radiographers etc. no point coming to talk to us with no information, even though it is frustrating for us.

Norks is it hot? I'm in a sealed room with filtered air. It's like super-air-conditioning. I'm freezing.

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ChickenLickenSticken · 17/07/2013 06:35

The uncertainty and not-knowing must be torture but then I'm not very patient even at the best of times so I hope you some info and (good) news ASAP.

ClockWatchingLady · 17/07/2013 13:08

So sorry to hear that Joe and you have to stay in hospital for longer Sad.

The waiting for further information must be so very hard (understatement).

Thinking of you, as always.

Flowers
TeaMakesItAllPossible · 17/07/2013 16:25

Trazzles I'm so sorry to read that you're back on tenderhooks again. Such an emotional rollercoaster for you all and a hard physical journey for Joe.

I shall be hoping for information soon and good news from that information.

I have piles and piles of discarded duvets, jumpers, shoes, blankets, damn it, just clothes in general, should we need to airlift them in for you both.

It's almost too hot for tea!

VenetiaLanyon · 17/07/2013 21:25

Sorry to hear there's another step back, Trazzles; poor Joe. Hope you get some clarity on a plan soon.

ShaggingZumbaStylee · 17/07/2013 21:52

hope iv gives tummy time to recover.

tholeon · 18/07/2013 21:34

Oh fucking bastard cancer. I hope you get some good news soon. Still here. Off to give blood tomorrow. At last. X

Original poster
Trazzletoes · 18/07/2013 22:06

Thanks all for blood donations. I was reading on Facebook today that they are desperately short of O- and B- and if you are one of those blood groups and just turn up they will fit you in due to the shortage.

J gets a little bit brighter every day, just a bit... He's fine with his intravenous feed. No signs of improvement with his stomach yet .

Re: potential relapse... I just don't have enough energy to even think about it at the moment. I'll worry about it when they give me something more to worry about.

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ToffeeWhirl · 19/07/2013 00:13

Glad Joe is feeling a bit brighter, Trazzle, but very sorry his poor stomach is still not better and that you are facing more uncertainty. X

saffronwblue · 19/07/2013 00:23

Sending thoughts to Joe and all the Trazzles.

Original poster
Trazzletoes · 19/07/2013 16:57

Well, it's been a fairly good news day today!

But also we saw Joe's consultant and he has had a couple of people look at the scans and they don't think there's anything there - just the way his intestines are lying. They're testing his urine anyway as this would show if there's a "mass" of neuroblastoma but expecting this to come back fairly normal. But that worry is out of the way.

We're still waiting for his tummy to calm down. They're still pulling the same volume of bile out of his tummy every 6 hours rather than every 2 as they started the week, but the volume itself isn't decreasing IYSWIM. I know it's correspondingly less, but it stays at roughly the same amount every time.

J has been brighter still today which is good and DD has been in so we have had some lovely cuddles.

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ClockWatchingLady · 19/07/2013 19:58

So pleased to hear the positive news about the scan, that J is brighter, and about the lovely cuddles with DD Smile . Have a good weekend X

StealthPolarBear · 19/07/2013 20:00

Glad to hear today has been a good day :)

Millie2013 · 19/07/2013 20:06

Bloody hell, this must feel like you are riding the world's scariest and most out of control rollercoaster

I'm so sorry about the latest uncertainty, but so relieved that it appears to be not what you feared. Strength, love and big hugs to you all and I hope that you have a good weekend with Joe xx

onedev · 20/07/2013 00:11

What a rollercoaster!! Sorry you're all going through this??xx

onedev · 20/07/2013 08:12

Sorry - don't know where the question marks came from.

ToffeeWhirl · 20/07/2013 09:30

Very pleased to hear the good news. I hope you manage to have an uneventful and peaceful weekend Smile.

bobkate · 20/07/2013 11:49

I haven't posted for a while but always checking in, hoping his tummy settles down soon... thinking of you as always and glad he's felt brighter in the last day or so x

Original poster
Trazzletoes · 20/07/2013 23:25

No updates because nothing has changed

He's super gorgeous though and my heart melts when I look at him. He is such a wonderful, kind-hearted little boy. I can't quite believe he's mine Grin he's just fantastic. I love him so much I think I need some sleep!

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minmooch · 21/07/2013 10:07

Sending you lots of love. Joe sounds gorgeous in all sorts of ways xxxxx

Hmmkay · 21/07/2013 12:28

Just posting some good vibes for Joe, I donated some of my B- blood last week xx

Ragusa · 21/07/2013 14:27

Oh Trazz, just catching up with your rollercoaster of a week. Hoping (understatement) that it it's not a relapse, but it's good to hear the preliminaries didn't reveal anything suspicious.

Original poster
Trazzletoes · 22/07/2013 19:49

No one is now concerned that its a relapse so that's a good thing.

J has been started on a liquid feed again and he's tolerating it fine so far - a good thing. The Doctors are hoping that we should be home for the weekend. They've delayed his treatment for another week but that means its more likely to actually work as if they gave it now it may not be absorbed properly.

They aren't going to change his dosage yet either which is a bonus.

I'm just sitting here watching him sleep and its got me quite emotional. I know it's silly because he's doing fine at the moment, but I'm so scared that he's not going to get better. He's still so small. He's my little baby and I'm just so scared.

Ugh. Woman up, Trazzle.

OP posts:
Badvoc · 22/07/2013 19:51

Oh trazzles :(
Still here, still thinking of you every day xxxx

Steamedcabbage · 22/07/2013 20:01

Oh Trazzles it's not silly, it's only natural to be scared xxxx Must be so exhausting for you though xxxxx

Only just got back on here ...still praying

Glad Joe is tolerating his feed and that you may be home for weekend. Small steps and all that ....