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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:
GlaikitFizzog · 02/06/2013 07:09

I can knit a bag

Original poster
Trazzletoes · 04/06/2013 11:28

We are sitting waiting for a platelet transfusion so just wanted to say thanks again for blood donation.

Joe is still doing well and we have just found out yesterday about what will happen for the last bit of treatment which is the bit that's part of the clinical trial. Joe will be getting the additional drug on top of the more standard one (although neither is available outside the clinical trial) as they are looking to see whether the additional drug improves outcomes.

It means more side effects and longer stops in hospital but we are happy that he has that side of the trial even though it is more disruptive in the short term, it shouldn't have a worse outcome than the one drug by itself and hopefully will have a better outcome.

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NorthernLurker · 04/06/2013 11:41

That sounds very positive. It's great to know he's getting everything that could possibly help. I try to do a quick prayer time as I cycle to work each morning and Joe is top of my list Smile

TeaMakesItAllPossible · 04/06/2013 12:18

So glad he continues to improve and delighted that he is on the path you want Trazzles

I was thinking yesterday about who would have received the small bag I managed. I hope they are improving too.

When does the treatment start and how long will it take?

Thinking of you all and still lighting candles for you and your family.

ToffeeWhirl · 04/06/2013 14:07

That's great news, Trazzle Smile.

VenetiaLanyon · 04/06/2013 14:12

Very good news Smile

QOD · 04/06/2013 20:08

Xx

Ragusa · 04/06/2013 21:03

Fabbo. So glad all seems to be progressing as expected.

Are you getting much rest trazzles at the mo?

maxmissie · 04/06/2013 21:07

Glad the news for Joe is all positive. Haven't posted for a while but am so pleased to hear of the good news you had a few weeks ago. Still sending love and strength and hope. xx

Original poster
Trazzletoes · 04/06/2013 22:40

Not getting much rest, no! DD has been off nursery as a precautionary measure again as chickenpox is going round. She also has a nasty cough which is keeping us both awake at night, plus Joe has to fast every day for his anaesthetic so either DH or I has to get up at 2am to turn off his overnight feed. Even when DH gets up I usually wake as well so...

Plus I haven't worked regularly since 2011 so it's quite a shock to the system getting up to function at 6am every day! In fact, I haven't done that for 5 consecutive days since at least 2009, probably 2007... But there are only 4 more sessions of this. And I can hardly complain given how much I had desperately longed to be in this position!

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NorksAreMessy · 04/06/2013 23:57

Just popping in with my regular nag encouragement to you all to donate a pint of the red stuff. I am FINALLY managing to take DD for her first time on Thursday. She had ear piercings, antibiotics and then double booked herself, so it has taken AGES to get her there.
Let's have your blood, MNetters :o. We Need talc to make a vampire emoticon for us

How did they choose Joe for the trial, is it random or was he selected especially? Whatever the reason, it is amazingly wonderful that he gets to grab at another chance.

MaggieMaggieMaggieMcGill · 05/06/2013 00:26

So so happy to hear the good news. Hope it carries on getting better and better.
I would love to donate blood(I'm A- too, according to David Icke, us negative blood types are descended from aliens!) but I had a transfusion last November and that excludes me for life Sad
Thank you to all those wonderful people who donate their lifeblood, without that the NHS would be, quite litrally, screwed.

ChippingInWiredOnCoffee · 05/06/2013 01:16

Sorry to hear that you aren't getting much sleep and that DD is off nursery again (how are you managing with that and you working?) - but it's all such great news about Joe - I'm still GrinGrinGrin.

Have you got enough bags yet??

Last time I donated blood (a fortnight ago) they had some new fancy reclining chairs, instead of the old camp stretcher type things - they are FAB and I managed not to feel too faint at the end of it all - go the new chairs!! Especially as they were talking about not letting me donate anymore due to fainting.

As I said, I'm a B+, so no good for Joe - but hopefully one of his little friends is benefitting from it!!

GlaikitFizzog · 05/06/2013 06:34

I Am donating on 3rd July at my sports centre. Norks as you are good at nagging, if you see me around that time can you remind me please? I am a scatter brain just now. Too much going on!

Trazzles, I'm so glad to here your updates. As you say 4 more sessions and no more early mornings for a while!

My offer of a knitted bag is still on the table. I have wool left that would match in with the hat I did. You know if he is worried about coordinating accessories :o

NorthernLurker · 05/06/2013 08:09

I had to cancel my blood giving last week - had a cold. I was so annoyed with myself! Will rebook soon.

upto11 · 05/06/2013 09:38

So glad that Joe is doing well. I think of you all often. X

LatinForTelly · 05/06/2013 12:53

Trazzle, sorry if you know this, and there are other reasons why you have to get up at 2 for Joe, but if you have a flocare infinity pump (the nutricia, purpley one), do you know there is a way you can set the dose, then set it to 'mute when done' so that when it finishes the dose, it will just stop silently, rather than alarm and you won't have to get up? (Although of course, Joe will remain 'attached' and you won't flush the tube til morning etc)

Sorry to be annoying if you can't do this for reasons I haven't considered. It's just we do it, and I have met other mums who tube-feed overnight who haven't been told by Nutricia/health care professionals that it's an option. The option is on a hidden menu, bizarrely, but I can dig out how to do it, if it would help at all, even in the future at some point.

Glad everything's going smoothly, and the trial is the one you wanted. Splodging still xx

Original poster
Trazzletoes · 05/06/2013 13:48

Thanks Latin he actually has an Applix smart pump. No doubt it will have the same feature but I have no idea how to access it! Also I was a little lax with flushing with his last my tube and it might have got a tiny teeny bit blocked... Oops...

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Smartieaddict · 05/06/2013 13:53

Glad to see Joe is getting the additional drug, and things are going well. I gave blood last week for the first time in about 12 years. I tried to drag DH along as well but he was "too busy" I will keep on at him though until he caves in!

MrsFrederickWentworth · 05/06/2013 20:13

Good news on the drug front and continuing to Splodge.

LatinForTelly · 05/06/2013 21:32

Ahh ok, Trazzle. Just thought if it could save you one wake-up, it was worth mentioning!

Original poster
Trazzletoes · 05/06/2013 22:30

Definitely worth mentioning!!

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NorksAreMessy · 05/06/2013 22:37

glaikit you gorgeous person, you get a special Norksy YAY for making a bleeding appointment.
I will be at BUMSEX central (Center Parcs) on 3rd July, but will try very hard to nag remind you.

NorksAreMessy · 05/06/2013 22:38

Poor northern, but quite right, nobody wants snotty blood :)

Original poster
Trazzletoes · 05/06/2013 22:52

Big up smartie too, Norks

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