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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:
StealthPolarBear · 10/06/2013 18:07

not exactly. Turns out my last donation was 2006 Blush

toomuch2young · 10/06/2013 23:56

Just letting you know still think of Joe each day and hope things are going as ok as can do for all the Trazzles. Hope the sunny days are helping give a little lift to you all.

Wahay for all the donors Grin

Ragusa · 11/06/2013 23:21

Still thinking of Joe and you all. How's he getting on?

TeaMakesItAllPossible · 12/06/2013 16:01

Still thinking of you and your Joe and the rest of your family every day.

bobkate · 12/06/2013 20:21

Same here - still thinking of you all x

vez123 · 12/06/2013 21:45

Sending you my thoughts...

Original poster
Trazzletoes · 12/06/2013 22:21

Thank you all. He's doing grand, thanks - well enough for me to have done a couple of days at work this week!

We are back in hospital for a bit tomorrow to pick up some retinoic acid which is the start of the next phase of treatment already! Hopefully he won't suffer too badly with side effects.

I found the list of side effects from the radiotherapy the other day - I had forgotten that the affected kidney will stop working within the next few years. I know, I know, he has a spare...

DD took her first steps at the weekend too. It's lovely to see them both learning to walk together. It's a right pain when they fall in to each other though!

OP posts:
onedev · 12/06/2013 22:27

Glad it's going well - long may the good news continue. Thanks

Ragusa · 12/06/2013 22:32

Wow - that is truly amazing to hear. So fantastic. You working. Who'd 'a thought it just a few weeks ago Grin?

Let's hope his kidney rallies. Is it possible it will remain undamaged?

My uncle only has one, never affected him or stopped him drinking gallons of whisky not meaning to be flippant, but you're right: How fortunate we are kind of born with a spare.

The idea of them both learning to walk together (him again, her for first time) brings a tear to my eye.

NorksAreMessy · 12/06/2013 23:11

YAY for stealth, you are bleedin' LOVELY :)

ChablisLover · 12/06/2013 23:20

Trazzle - have read your threads and wish you all the best.

Have you heard of Oscar knox?

mobile.twitter.com/Wee_Oscar

He had been suffering the same disease but has recently been declared free - fingers crossed.

His parents have set up an appeal to raise money for treatment and for research.

ninja · 12/06/2013 23:47

So lovely to hear this positive update. I hope you're managing to get some more rest. I'm not sure we should be celebrating you going back nto work except for the normality it shows. Make sure you get a proper lunch break x

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

It has been great to be back though. It's been 5 months since I was last there and it's good that Joe is well enough that I CAN go.

lebasi thanks for the info. We are actually already involved with Make A Wish and waiting to hear which wish of Joe's they will grant - the children have to make 3 wishes and then they see which they can sort out. We initially contacted them when Joe had relapsed and potentially wouldn't have been on any treatment but now he's back on treatment his consultant has said there won't be time for him to go until after his treatment has finished but I don't know whether Make A Wish will either wait that long or agree to send him once he's not being treated anymore.

OP posts:
VenetiaLanyon · 13/06/2013 06:49

Pleased to hear about you getting back to work and DD's first steps, and here's hoping that Joe rails successfully against the possible side effects; is the kidney thing an inevitability, or could he possibly be lucky and avoid it?

Original poster
Trazzletoes · 13/06/2013 06:49

ninja I only do 1 1/2 days a week(!) so only 1 lunch break to worry about and I absolutely DO get it, don't worry! Fresh air... A stretch of the old legs... Food...

OP posts:
Original poster
Trazzletoes · 13/06/2013 06:51

Re the kidney... The piece of paper says it will definitely happen but neither DH nor I remember the Doctor saying that! I have a meeting with her next week so will check then but I guess there's a good chance.

OP posts:
tholeon · 13/06/2013 08:09

Lovely to think of them both walking together, glad you are managing a bit of work, too x

TwentyTinyToes · 13/06/2013 08:14

Hope the kidney damage turns out to be minimal or even better Joe manages to avoid it all together - if that is possible. Glad to read that Joe is feeling better and that you have been able to get back to work, it must be good to have a bit of normality in your week.

I don't post much but often think of your little boy, and the rest of the trazzle gang of course. X

QOD · 14/06/2013 18:12

Just to let you know Joseph and Aillidh are going on the back of My Race For Life name plate thingy.
Along with members of my family I've lost and friends and family who've won the fight.

Any another mumsnet babies are welcome to join my uncle, my cousin and nan who I've signed up to run for x

ChippingInWiredOnCoffee · 14/06/2013 18:22

Trazzle - it's good to hear Joe is still doing so well :)

Lovely that DD has taken some steps! Is she walking all over the place now or was it a bit of a one off?

You are allowed to be sad at missing out on things. Of course you are happy that Joe is here, he is doing well and the prognosis is looking brighter but that doesn't mean you can't be sad for lost opportunities along the way.

LatinForTelly · 14/06/2013 21:43

Just checking in, Trazzle. Pleased you got into work, and that Joe is getting stronger. It must be very hard to be faced constantly with the negative consequences of his treatment - like his kidney - though Sad.

DH managed to give blood yesterday. Without fainting! Quite proud of him.

Hope you all stay well and have some fun this weekend. xx

NorksAreMessy · 14/06/2013 22:36

YAY for latin's DH. I am impressed.

QOD you have made me a bit moist in the eye

QOD · 14/06/2013 22:44

Moist Norks x Wink
They're on there now. Toooooo many names

MrsFrederickWentworth · 15/06/2013 12:24

Trazzle,

Lovely picture of them both walking together..have you got a real picture of them to gloat over?

Northernlurker · 16/06/2013 21:00

Kidneys can be very unpredictable. He has two though and even if one packs up that one will keep him well.