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.

Clock thank you but... OMS almost always presents before diagnosis - and because it's thought to be linked to the body creating antibodies against the neuroblastoma, it is much more likely to be in the lower grade tumours. Which almost exclusively affect babies.

This other lady's daughter has been diagnosed, gone through treatment, spontaneously recovered through periods when she wasn't on treatment (just like Joe) and has now developed OMS afterwards.

It's very rare to spontaneously recover from stage 4 high risk. So how can anyone know whether then all children who spontaneously recover get OMS as well, or whether it's only a tiny proportion of that tiny proportion. Do you get me?

I do get you, Trazzles, yes.

Sorry if what I said was irrelevant.

It must be a really scary thought.

Have enough people spontaneously recovered (or possibly done so, as in Joe's case) that if there were a really strong link it would have been spotted (case studies in medical literature, etc.)? Really strong statistical effects often don't take many cases at all to detect.

I know it must be almost impossible not to do so, but extrapolation from individuals cases is so very difficult and imprecise.

It must be so overwhelming to have to become expert on these things (as well as everything else), Trazzles.

Sorry again if I'm talking irrelevantly or unhelpfully.

Thinking of you and your wonderful family.

I don't know - she's the first person I've come across. She didn't even really realise until I mentioned the long-standing bit in Joe's leg that faded without treatment and then realised her DD had similar.

I called the Macmillan nurse too but he's not at work til tomorrow. I've left a message stressing I very much want to talk to someone about it.

It may be that the damage is already being done (if it's going to happen) but won't become apparent until it's like a critical mass of damage. In which case, perhaps they can scan for it or something. I'm getting away from myself just a bit here... But having looked at the info and spoken to this other mum it makes perfect sense to me that it's a real possibility, even if it does turn out not to happen, if you see what I mean.

Argh.

Hi Trazzles

I'm sorry to read you've had a stress filled day. The difficulty is I suspect that nobody can give you the reassurance that you seek because we simply don't know. Nobody knows. It's time alone that will show us how Joe's body copes with the illness and the treatment. Science - the journals, the web pages, the doctors themselves cannot tell you that. Not about the neuroblastoma nor any sequel. All that is known is what's happened in the past. It gives us clues about the present but no answers. I don't know how to make it easier for you to live with that uncertainty. All I can say is look at the child in front of you - the child who is home, improving in eating, improving in how he is. The child who has defied his prognosis. This is the child I'm praying for and I believe with everything I have that I'll still be praying for him, well and wonderful in twenty years. Hang in there.

What Northern has said really rings true to me, for what it's worth. I guess that you're into such a narrow field of experience with your lovely boy now that you are now ploughing your own path. Yes, someone else DC may have had a similar experience but they aren't Joe and there aren't enough of them to tell you exactly what's on that path now. Collecting others' experiences will help your motherly spidey-senses but trying to sift through them is going to be hard because the experts don't always know either. I wish it was different.

I hope your McMillan nurse comes back to you quickly. Can you also talk with him about how you can put a process in place where you can access support when you come across concerns like this?

Do you have any support to help you now? Perhaps someone to help you talk through your worries and concerns and finding your new "vigilant and watching" normal.

I wish I could offer you more comfort.

Trazzles :( So sorry that you're feeling scared again....I really have nothing better to add than what northern and tea have written. But I didn't want to not post and offer my not particularly constructive or helpful words of support. I shall be willing that Macmillan nurse to get back to you asap and hopefully he will be able to either give you some answers or at least be a kindly voice of support on the end of the phone. I shall splodge away in the meantime x

Slightly calmer this morning.

Or at least tending slightly less to the melodramatic.

I'm definitely a glass half empty person!

Tazzles, I'm not surprised, given what you've been through.

Is there any sort of listening support available to you? My friend (4 years in remission from a particularly nasty cancer) found that the period immediately post-treatment was really tough, she felt very lost and anxious and was dwelling on the "what may be/what might have been". Anyhow, she had some counselling and found it very helpful

Sending calming hugs xx

Anybody in your situation would be glass half empty I think. Severe illness leaves scars and some of those are emotional. Bu you know how it is with scars - give it time and you barely notice them.

So glad to hear you've been feeling calmer, Trazzles.

Hope today's been a good one.

Thanks clock J's Dr splits his time between doctoring and research so I've been told that he is looking in to whether or not he can find anything out. Bless his heart.

Not been a great day - with lovely min 's news.

Trazzle that sounds so scary and I can see why you are panicking; I would be too. Living under that cloud of "what ifs" must be petrifying.

I'm read the wiki link and couldn't see how they diagnose OMS or whether its really a case of waiting for the symptoms to present. Either way I hope they can provide you with some reassurance or information ASAP. And more hope directed towards it simply not affecting dear Joe.

With min's son passing it must bring this intolerable nightmare closer to home for you so I hope this panic passes soon.

Not sure what to say Trazzle - but thinking of you as always & wishing you all the best.

Lovely min's news is so very sad.

Trazzles, it sounds great that Joseph's doc is also a researcher so can find out for you. I hope this can lighten, even if only slightly, the load of how much you have to think about.

How are you feeling today, Tazzles?

Hello Trazzle, I lost you for a while, you dropped off my active threads which paradoxically wss a really good sign ;)

I am so glad Joe is getting stronger and doing some stuff.

I can completely see why you would worry about this syndrome. You have been so stressed and under so much pressure, if you were blithely batting off worries at this point I would be amazed and astounded.

Would a large hospital specialising in NB (I thought I read that Memorial Sloan Kettering in the US was one such? ) be able to give you any data? Or any of the orgs running the large treatment trials in Europe?

It is heartbreaking about Min's son.

Oh dear major name change fail.

Totally agree fluffling - hoping things are going well for you all Trazzles.

Yep - in agreement with fluffling here too. Hope all okay in Trazzlesworld x

Another one checking in and hoping all is OK.

Hope things are going well, Trazzle. Thinking of you and Joseph.

Me too.

Oh bless you all x thanks x

Everything is going well so far. So well, in fact, I've had to call DLA today to ask to apply for it again as Joe is currently on higher rate for everything and has come on so much in the last few days that that seems unnecessary! Hooray!

My panic has subsided rather, thankfully. The other little girl has a concrete diagnosis now of another, very rare, auto- immune condition but is responding well to treatment so that's fab.

I've had a few tears this week as one day he are a whole petit Filous and another day managed 2 chicken mcnuggets. I know these are such small things but they are by far the most he's eaten at one sitting for over a year.

Baby steps but he is improving