Joseph's last thread? Here's hoping...

[Trazzletoes]

My now 4 year old DS, Joseph, was diagnosed with stage 4 high risk neuroblastoma last October. It's a particularly aggressive cancer with an 80% relapse rate. Long-term survival statistics are not great.

Joe has had 8 cycles of chemotherapy, an operation to remove the main tumour, stem cell harvest, high dose chemotherapy and stem cell transplant as his bone marrow was destroyed, 3 weeks of radiotherapy and now 5 1/2 months of differentiation therapy and imunotherapy.

In April we learned he had relapsed and so had a 5% chance of ultimately surviving. Then, the relapse spontaneously un-relapsed but we don't know for certain what this means for his future. Whether its good or bad news.

He remains bright and cheery and gorgeous throughout.

Gosh trazzle - lost you for ages! just saw your comment to me elsewhere and it made me come and check how things were going with Joe.
So pleased he's got his Wish, very exciting!

Hopefully the bug will be knocked out by the antibiotics, and hopefully Joe will take the yoghurt to stop himself being knocked about too much by the antibiotics!

Shame his leg is hurting but all in all the news sounds positive, which is lovely to hear and I really hope it continues to be positive. xx

Hi, is anyone still with me?

Joseph is doing brilliantly at the moment. We are slowly taking off his medicines and he continues to get stronger. He goes to nursery now on his own for a couple of mornings a week.

I'm nervous today though - I'm taking DD to the Doctor as she has been complaining of a tummy ache, her tummy gets massive and she has dark circles under her eyes all the time as well as long standing constipation. I'm terrified. Half of me wants the Doctor to tell me I'm mad. The other half is desperate for a referral to the hospital...

I'm still here .

So glad to hear that Joseph's doing well. You must be terrified for your DD after everything you've gone through and I'm sure your GP will want to be extra careful as well.

The overwhelming probability is that there is nothing seriously wrong (but I'm sure you know that!). I'll be thinking about you, let us know how you get on

Still very much with you, Trazzletoes, and still routing for the awesome Joseph.
So, so pleased to hear how well he's doing.

Will be thinking of you at the doctor's today. It must be so hard to deal with. Holding your hand and sending positive vibes to you and your DD...

Ah, so pleased to hear how well Joseph's doing . I'm sorry you've got an extra worry about your DD now, but I'm sure there will be a simple, easily solved explanation for it.

Best of luck .

The Dr has given DD a good check over and declared her fit and well. That doesn't remove all my anxiety, neuroblastoma being known as "The Silent Killer" and all, but she has taken me seriously and strongly encouraged me to go back with any other concerns.

The kids are both(!) feasting on mini creme eggs. Well, J had 1 1/2 but that's better than none!

Thanks for patting me on the head and smoothing my hair x

Ah, that's excellent news .

1 1/2 mini crème eggs is not so bad - they are quite sickly .

Trazzles I'm glad the Dr took you seriously about your DD. The anxiety we feel for our ill child is wrapped up in our healthy children too. I'm glad your Dr did not dismiss your anxiety and s/he will keep a close eye on her.

I'm so glad that Joe is doing well and going to nursery. It's a massive thing to let him go for a few hours - what an amazingly strong Mum you are.

Xxxxxx

Trazzletoes - did the dr mention gluten in relation to your DD's tummy problems? My DD is the same, and her coeliac test came back negative, for now, but she is definitely (IMO) gluten intolerant (as am I).

DD and I both get awful dark eye bags when we cheat with gluten too.

min nothing compared to your strength. I hope you have had a peaceful day. Much love. You are incredible x

That's interesting re: gluten... I have IBS and gluten aggravates it when I'm stressed. The Dr didn't mention gluten, she thought the dark eyes were just "one of those things". And to be honest, if she had mentioned it, I'd have been dubious... Joe's symptoms were put down to an unspecified food intolerance for months before he was diagnosed.

DD was constipated even when she was breast fed. Could gluten in my diet still have affected her?

Hi Trazzles, lovely to hear Joseph is doing well.

I believe you can pass on things you eat to your children when bf. maybe try gluten free for a week and see how it goes?

Excellent news about Joe. Bless him. X

Yep - still here...So delighted to hear how well Mini Trazz is doing.... what a lovely update to read. Hope your DD picks up soon. My oldest suffered with long term constipation for yonks and when she was particularly bunged ( due to holding more than anything ) she would get very dark circles under her eyes xx

Still here, though I think I got lost for a while there. Might not have been on the thread but you are still in my thoughts.

Fingers crossed for your DD Trazzle. Sounds like you still have a few unanswered questions.

Gingers crossed for Joe's leg and continued building of strength. Lovely to hear that Make A Wish is granting his wish. We, the TeaCollective, are running 20 miles to raise for them on Sunday, me inspired by Joe, the older DC by Batman and the littlest because there's no bugger to look after him if we all do it so he's got to run 1.5 miles with DH. Was it Postman Pat that took his interest at the interview? Anyway I still smile at the thought of it being a meeting with a tv character or Florida. Glad you got the mice . I will light the Trazzle candle once more for no illness before or during the trip.

I will also light a candle for min and W. I too wish for a peaceful time for them. Much love (((((min))))))

I'm still here too - glad to hear the news is good.

Hi Trazzles, unlurking to say: (your Christmas post reminded me to get back to giving blood post-pregnancy, booked in on Thursday) - but also, my DD has a dairy intolerance which we suspected when she was EBF so I stopped, it helped, and now she's 10 months and eating everything it's more obvious that dairy is a problem, so I'd say if you're worried about gluten for your DD do try to avoid if you can. Scary how often these 'normal' foods cause problems for our DC these days

Hi Trazzles, I have followed your story as well (think I have posted just once before!) I am so glad to hear re DD - and hope she is on the mend properly very soon. Joe sounds like he is an amazing little fighter - to you all

Hi there so lovely to hear that Joe is doing so well and enjoying normal four year old things, like going to nursery. Of course you will be worried about your dd, anybody would, but it sounds like she has had a thorough checking over.

Right, it's me but under a different name since I'm having trouble changing back to myself - stupid computer.

Am having a panic-filled day having spoken to a fellow neuroblastoma mum online (yes, yes, I know, I know) whose DD seems to have had a similar experience to Joseph with spontaneous disappearing of tumours.

One year on and she has developed something called Paraneoplastic Syndrome. Her DD is very unwell and from what I can tell likely to be permanently severely brain damaged. It sounds like it can be treated, if the child responds to treatment, but the damage can't be reversed if you see what I mean.

I'm terrified that I have only a couple of weeks left of my beautiful boy being himself before suddenly becoming brain damaged. I've e-mailed my Macmillan nurse but no idea whether I will get a reply. I will need to chase it up. I can't wait til the next check up because the Doctor we had last time is very dismissive of my concerns in general and has told me before that Joseph cannot have relapsed as otherwise he would not have recovered. So he isn't going to worry that any antibodies (if that's what caused the "cure" will go on to attack Joe's brain because he doesn't think that there was anything for antibodies to respond to in the first place.

I feel so sick and terrified.

Because this "cure" is so rare anyway, how can they tell me whether or not it is likely to happen to Joe. I'm scared I'm scared I'm scared. And off to give him a massive cuddle.

Clearly not under a different name after all ffs.

More info here

The info I've linked to concerns children who are diagnosed with OMS first and are then found to have neuroblastoma. But apparently it develops because the body develops antibodies to the neuroblastoma (like Joseph's may well have done) but the antibodies can't differentiate between the cancer cells and healthy brain tissue so attack the brain as well.

Trazzles, am here holding your hand.

The uncertainty must be so hard.

I should say from the start I'm not a medic, but have just had a look at some links about this. From what I can see from my brief look, it's more likely to be associated with low grade neuroblastoma (not the case for Joseph, right?), and also it looks lilke Joseph is significantly older than the age range who tend to me most severely affected by this. So if you add these factors to the already low probability....?
It must be so tempting to try to work out risk factors from individual cases, but there's probably really very little you can tell from other individuals.

Sorry if this isn't helpful.

Anyway, am holding your hand and hoping the panic is passing.

Of course you are going to worry...and you're going to keep reading stuff until you are sure. I read EVERYTHING to do with childhood leukaemia now and risks of treatment etc. I hope you get all the info you need soon xxxx