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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:
eightytwenty · 26/06/2013 22:40

This reply has been deleted

Message withdrawn at poster's request.

ChickenLickenSticken · 27/06/2013 06:24

Thank you for the update trazzle, glad to hear things are going ok and joe is good. How long is the next stage? I hope the anticipation is worse than the reality but splodging for light, love and braveness for you all.

Original poster
Trazzletoes · 27/06/2013 06:41

clickable link

OP posts:
VenetiaLanyon · 27/06/2013 09:31

What does the immunotherapy involve, Trazzles?

MelodyBaker · 27/06/2013 21:57

Still thinking of you all, he is one amazing boy and your one wonderful family xx

bobkate · 28/06/2013 21:46

Checking in - hope you're all hanging on in there ok, thinking of you lots even if I don't post all the time xx

notanyanymore · 28/06/2013 23:22

Thinking of you x

Original poster
Trazzletoes · 30/06/2013 10:10

Hi, sorry I haven't had much time this week - the immunotherapy involves:

2 weeks of 1 injection per day on weekdays. The 2nd week also involves an intravenous transfusion of something over 8 hours. Together these should hopefully stimulate Joseph's immune response and teach his body to recognise neuroblastoma cells and attack them if it can't already do that.

The injections can lead to fevers and flu-like symptoms which is why we have to be in-patients. If he doesn't get these side effects then in future he may be able to have them as an out-patient.

The 2nd week will always be in though. The infusion is painful so he has to be on morphine while he is having it Sad and it has a bunch of side effects including possible damage to his heart (he has to have a lot of scans) and it might make his pupils different sizes.

If he gets these side effects they will look at either reducing the dose or stopping it altogether .

It also knocks the immune system like chemotherapy so we can expect more hospital visits with high temps etc. he has 5 cycles of it with at least 2 weeks I between for the vitamin a.

The vit a is twice a day every day for a fortnight. It's a bloody nightmare but he desperately needs it as he still has active cancer in his body (in his leg).

OP posts:
ToffeeWhirl · 30/06/2013 11:04

Oh, Trazzles, that sounds really tough. I hope it will all go as easily and painlessly as possible. ((hugs))

blizy · 30/06/2013 12:26

Hi trazzle, sorry I've not been around lately. I hope you and Joe are doing good. I'm off to have a catch up on the thread. Splodging from Glasgow. X

ChippingInWiredOnCoffee · 30/06/2013 12:38

Trazzle - it must all feel so overwhelming at times :( I really don't know what else to say, it's just shit. I guess the 'good bit' is that DS is well enough for them to be able to do this and they wouldn't do it if they didn't think he would benefit from it. Big hugs to you all xxx

Thumbwitch · 30/06/2013 14:00

Hi Trazzle - lost sight of you for a bit there but pleased to catch up and see how things are progressing with Joe. The faff with the retinoic acid does sound bloody annoying but it will be worth it if it works. :)

Is the only active cancer left in his body in his leg?

Ragusa · 30/06/2013 22:27

Here's hoping the immunotherapy goes as well as can be expected, and that you have enjoyed a nice, calm, sunny weekend together.

Thinking of you this week.

onedev · 30/06/2013 22:35

You guys have such a lot on your plate. Splodging & wishing you well.

Original poster
Trazzletoes · 01/07/2013 21:13

Hi, Joe has had the first dose of IL2 immunotherapy tonight so just waiting to see whether he develops a temperature or not :s

Yes, the only bit of active cancer left is in Joe's leg - his left femur to be precise. Between the 2 scans of them finding the relapse and it going away, the stuff in his leg also faded which is a good sign. It may have already gone away but we can't count on that so the retinoic acid will hopefully be helping to mop up those bits.

Today we saw the consultant who job shares with Joe's consultant and his take was that the fact that the relapse had gone away demonstrated that it hasn't been neuroblastoma cells in his head after all. I'm now really confused so hoping to see Joe's consultant tomorrow for clarification. Before they were certain it was relapse as nothing else would have shown up on the scan. We'll see.

OP posts:
LatinForTelly · 01/07/2013 21:31

Sounds confusing, Trazzle. I hope you get some clarity from Joe's consultant tomorrow.

Also hoping that the immunotherapy goes as smoothly as possible. Such a marathon for Joe, and all the Trazzles. Thinking of you all, and splodging xx

blizy · 01/07/2013 21:35

Sounds very confusing trazzle, I hope you can get answers soon. X

Hassled · 01/07/2013 22:00

I've been lurking but as ever can never think of anything constructive to say - just that you're in my thoughts. Fingers crossed that there's no temperature now with these injections.

QOD · 01/07/2013 22:03

Bless him, I often think of him and you and all the other cancer babies .. . Bloody cancer

squalorvictoria · 01/07/2013 22:06

I've just read the entire thread. Words are so inadequate but I'm so happy that progress can still be made.

Ragusa · 01/07/2013 22:56

To say it must be hard to have differing professional opinions is an understatement. I have been there sort of - and when you get the more favourable interpretation how you hang on to those words. Paeds don't tend to be over-optimistic so I have everything, everything crossed for you that there never was any CNS relapse.

How is the rest of the Trazzle family doing? Are you rubbing along with Mr Trazzle OK, and is Micro Trazzle free from childhood bugs ATM??

ChickenLickenSticken · 02/07/2013 06:27

Oh crikey, I think I totally underestimated how much you still all have to go through daily. I'm sorry you've had confusing news, I hope there is lighter news and ultimately greater clarity because of this though (if that makes sense).

Go joe :)

VenetiaLanyon · 02/07/2013 06:27

Gosh, hope you get some clarity from the consultant today, Trazzles. Hope Joes's temperature hasn't gone up.

Original poster
Trazzletoes · 02/07/2013 07:57

Ragusa at the moment I want there to have been a relapse. Then, there's a chance his body has noticed it and attacked it. Both consultants said before there was nothing else it could have been so I don't have any idea what other one was going on about yesterday!

Joe's consultant is absolutely never optimistic where he has the chance to be pessimistic but I think that's a good thing. Fortunately we find it easy to trust him.

We're all doing ok, ta. Toddler-traz is now up on her feet and can walk the length of a room (before inevitably flying face down and missing sharp corners by a hairs breadth).

Joe spiked a temp last night already

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Quangle · 02/07/2013 21:07

Just popping in to see how you are all faring. It must be so hard to know how to process all this. Thinking of you often.

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