Does anyone remember my little Blue-eyed Joseph? Bad news and I could use some support, please.

[Trazzletoes]

My 6 year old, Joseph, was diagnosed with stage 4 high risk neuroblastoma cancer when he was 3. He had 14 months off treatment and then had no evidence of disease for 2.5 years. We were starting to imagine a future for us all and make plans.

We found out a fortnight ago that he has relapsed. 5 year survival rates from here are less than 5%. Possibly even less than 1%, I can't remember. Chemo starts tomorrow, I am struggling to understand how this has happened to us again (because there is no reason) and how on earth we are going to make it through this. I know it's by taking a minute at a time, but it feels so huge right now.

Do what you need to do xx

Trazzle the last thing this thread should be is a burden, another thing on your to do list. We only keep posting because if you are lurking or when you do come back we want you to know you're all still in our thoughts.
Starting a thread doesn't mean you owe us anything.
I'm so sorry to hear things aren't good. I can't even imagine what you're all going through.
One more 'mum' comment and then I'll shut up. Mn is for you at the moment, not the other way round. Ok young lady?
Very impressed with my accent in cliché. That is obviously what these posh new phones can do.

Yeah erm each said it in fewer words.

How many posts is it you can have on a thread? Trying to work out if I need a new one yet...

It used to be 1000. Not sure if they'be changed it

Lots of love

So, then, J was doing brilliantly. The cancer was responding really well to the chemo and after 4 (of 6) chemo cycles, there was barely anything left. We were told to expect at the end of treatment scans that, at worst, there'd be no change and the Drs would be delighted with that.

J had to miss the last cycle of chemo because his liver was suffering from the chemo and there was a risk it could result in fatal liver failure.

Unfortunately, when we got the results just before Christmas, we were told that the tumour on his skull was more active than before and that there was cancer back in his bone marrow which had previously looked clear.

His Consultant confirmed that no one survives long term from this point.

He's starting a low level chemo w minimal side effects this week to tide him over, but that's basically intended to slow down further growth rather than to kill the cancer.

We are hoping that Joseph will be put on a clinical trial at GOSH which is very experimental. It's had great results in leukaemia but nothing so far for neuroblastoma - although no one has yet been on the drug combo J would have.

That means spending a fair amount of time in London, without DD, and hoping for a miracle.

Praying for a miracle.

Then we're hoping for a miracle.
how is j in himself at the moment?
Hoe old is your dd now?

He's feeling perfectly fine in himself.

She's nearly 5. Far too young to have bee dealing with this crap for almost her entire life.

I'm sorry you haven't had better news. Sounds like very hard choices for you all. Do you know what side effects the GOSH trial may have?

Sending lots of love to you all dear trazzles
❤

Not really, because it hasn't done what it's meant to in the other neuroblastoma patients.

Flu-like symptoms is what we are hoping for as that will mean it works. Hoping that his body doesn't try to destroy itself which is a theoretical possibility.

SPB & Each said it earlier - this thread is to support you & no update is required at all. I, like everyone else, just post to let you know that I'm still thinking of you & wishing you all the very best.

That said, thank you for the update. I'm so sorry it's not better news but as with everyone else, I'm hoping & praying for that miracle as it's what you all deserve.

It's hard to believe that your DD is 5 now - time passes so quickly. It's so unfair that she & J are having to go through this, but if it's any consolation, my friends DS has been an amazing support to his brother who's been undergoing cancer treatment & whilst you wouldn't wish this on your worst enemy, the maturity, development & closeness of those boys is second to none & something that will no doubt make him stronger & an amazing person as he gets older.

Wishing you strength & praying for that miracle

Praying for a miracle Trazzle.

Wishing you and your gorgeous boy all the luck in the world for his clinical trial.

Wishing you luck with the trial

Thanks. We still need to cross the ts and dot the is, but hopefully he will be heading down in Feb and really hoping it works because we'be got nothing else.

Oh Trazzle. Am holding out every hope for a miracle for you.

I'm so sorry to read your latest news Trazzle. I hope Joseph can participate in the trial and that you have a breakthrough. Our son has been treated at gosh (brain tumour) - I hope they have answers for you. xxx

Sending you lots of positive vibes

Oh Trazzles. I've sent my plea to the universe for that miracle

I remember your posts too and only thought of you last week.
I'm so so sorry to read this. Strongest of hand holds from across the ocean

I'll light a candle Sunday

I know religion isn't a popular topic here but it can't do any harm.