My beautiful Joseph with his blue eyes, ready smile and arms always open for a hug or a tickle fight

[Trazzletoes]

He has survived the most horrific cancer treatment with his smile, joy and love intact. Unfortunately the neuroblastoma has survived too.

I'm so glad that the results were relatively good, Trazzle, though it must be frustrating to have to wait for yet another set of results. And of course you are not being melodramatic. I hope you manage to do something nice as a family this weekend. x

Been thinking of you a lot Trazzles and glad to hear the MRI results were as they were. Lovely to read that Joe will have a month off and you can enjoy some quality home time together. You must be so exhausted...I think of you often when I'm having a whinge about how knackered I am...doesn't take me long to tell myself to get a grip. xxx big hugs xxx

I'm pleased the results were relatively good, sending all the vibes I can muster that whatever time he has left is distress free and filled with joy.

Dear Joe and you. I hope there are more good days coming up for you, with his laughter and sunshine. I hope you have some practical support with all the endless stuff there must be to do, so you can concentrate on being together. X

Glad the results were relatively good.
Am glad to hear he has a month off treatment to recuperate and to fill your days with giggles, tickles and mischief

Enjoy your time together as a family.

Always in my thoughts xx

Glad the results were as expected.

I'm also pleased you have a month to give Joe a break from treatment before making any decisions.

And lastly big hugs to you, joe and your family x

Thinking of you all Trazzles. Hope your days to come and filled with sunshine. xxx

Good to hear that the scan results were relatively good and that you can all get some time to recuperate. Hope you all have lots of fun together. It would be great to hear about some of the things you do- you always write so beautifully about your dear Joe Trazzle.

Trazzle

So glad joe is feeling well, and that you have a great consultant you trust. I do so hope that the next few weeks being some bearable news.

I could not help reacting to one thing you reported from one of your medical consultations: "there is no evidence that those [treatments not available in uk currently] improve outcomes in the long term." (Sorry am paraphrasing). For the new treatments there is, by definition, no evidence they will help in the long term as they have not been around long, and in phase II can only be used on patients who have run out of other options and so outcomes are likely to be poor (although hopefully better than current options). So although it may absolutely be the case that none of these are a good fit for joe, the lack of long term stats for the new treatments is not, in itself, a reason to discount them.

Appreciate all the nuances are lost on here and you may be very well aware of this point, just as a scientific researcher who has followed the NB story through individuals and the science, I heard a disconnect that set me off on my hobby horse!

It is good that the bone marrow is still cancer free and no other unexpected lumps. As for the skull/brain ones there is more waiting for you - it's very frustrating on top of everything else.

A month off treatment will be so good for you all, to allow Joe a chance to recover a bit and gain strength. I hope that you have some lovely family days.

Much love as always xxx

yorkshire thank you for explaining that, I'm not very scientifically minded so hadn't really thought too much about it, to be honest. But you are also right in that there are other reasons why we aren't looking to America for treatment.

It is right for some families but at the moment we don't feel that it's right for our family. We decided a long time ago that we didn't want to pursue treatment at any cost (whether financial or healthwise) unless there was evidence of a clear benefit to Joseph. If there was a reasonable chance of a permanent cure for Joe if he went to the US, we would be desperately trying to get the money together. But we can't get that assurance, because its not possible to give it, and feel its better in our case (and each family is different) for Joe to be here and spending time with his sister and his dad.

We all know that you will make absolutely the right decision for your family.

Hope you all have a lovely day.

All my words sound crap Trazzle - so all I'll say is that I'm thinking of you & wishing the very best for Joe & all of your beautiful family.

I can completely understand your view on that Trazzle. I think lots of people would make the same decision, actually.

I also understand that point of view Trazzle - the quality of what life Joe has left, however long it is (and I'm praying it's long!) may be more important to you all than pursuing treatment at any cost.

Very glad to hear his bonemarrow is free of NB, but sorry that the lumps are still there. Keeping you all in my thoughts. xx

Gingers crossed for good news.

Just popping in to say goodnight to ALL of the trazzlesies as Joe is, as so often, on my mind at this time of night.

Also to ask you all to please give blood if you possibly can (nag nag nag nag nag) and to nag nag nag nag nag somebody else if you can't. :)

Trazzle,

Would come to exactly the same decision. At one point we had to be prepared to, with something different.

In the meantime, like lots of others, sending love, strength, prayers Nd thoughts for you all.

Still thinking of you all Trazzle, off to give blood in a couple of weeks. A little boy in my community has been seriously ill recently and his mum's friend has organised lots of people to go and give blood, I will be thinking of him and Joe when I go along.

Just came on to send usual weekly cyber prayers/support and see that Thumbwitch has already said exactly what I wanted to say. Lots of love to you all, SC xxx

I've just realised you had dropped off my TIO, sorry trazzles. But I'm still here, still splodging and ready to jump into action if you need anything. Anything at all.

It sounds as though things in the here are now are settling not Joe is getting over the treatment. I hope that means you are slowly getting your mischievous little boy back.

Much love as always trazzles! :)

Now joe sorry!

Splodging
Thinking x

trazzle, totally understand. Hope it was clear was not offering comment on your decision, just correcting the view of the science. Only you and your husband and doctor are able to judge all the facts and make the best decision for joe and your family.

Hang in there.

Another person hoping you have years of good quality time together, and channeling every positive thought in that direction. You aren't being even one iota melodramatic. Sending love x