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Original poster

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

999 replies

Trazzletoes · 14/04/2013 08:13

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

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Are your children’s vaccines up to date?
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Original poster
Trazzletoes · 20/04/2013 12:26

Hi, sorry I haven't been on much. It's been a very busy week suddenly having 2 DCs to look after again and various appointments etc.

I'm sorry if there was any confusion - we weren't expecting any test results yesterday. We may get some more on Monday but we still aren't expecting to have the whole picture.

Thank you so much for signing up for blood donation. It means a lot to Joseph and so many other people. It's an amazing thing to do.

Joe's consultant is quite pro-NHS and not particularly sold on travelling abroad for treatment. His advice has been that there is no evidence that treatment abroad has any better results long-term, although there might be a better chance of short-term gains. Given how hard the last few months have been on the whole family, I think to go abroad we would want there to be strong evidence that Joe had a reasonable chance of a cure.

I know we have a huge amount of support but this still feels like a very lonely place to be.

By the way, Joe is doing great. Getting stronger every day.

OP posts:
thewhistler · 20/04/2013 12:47

Trazzle,

Lovely to get this, but only post when you feel like it, not because you feel you must. You have too much on your plate already.

Can completely understand the loneliness. V sorry.

Good news Joe is getting stronger, he will be able to enjoy more. I hope the weather is as lovely as here and you can get out with them.

SDTGisAnEvilWolefGenius · 20/04/2013 13:20

I've only just read this thread, and haven't read all of it properly, I'm afraid - but just wanted to offer hugs and support for you, Trazzletoes, and for Joe. And I will look into blood donation where I am - I know they come to the carpark at our local morrisons every so often - and I will donate as soon as I can.

Badvoc · 20/04/2013 13:25

Dearest trazzles.
So glad joe is getting stronger.
I will harass dh when he gets back home from a work trip away tomorrow to get signed up for donation :)
They don't want mine...it's pants.
Hope out all get out in the lovely sunshine xxxx

StealthOfficialCrispTester · 20/04/2013 13:31

"I know we have a huge amount of support but this still feels like a very lonely place to be."
Oh Trazzle, my heart is aching for you, and I can only begin to imagine how lonely. I sounds trite to say I think about you a lot but I really do. And as others have said this is your thread. if it helps you to be on round the clock, we will be here. If you can only pop in occasionally, that is also fine, and if you ever felt that it was too intrusive and you'd rather not post then that too is of course fine. There are no expectations of you

onedev · 20/04/2013 14:12

Lovely to hear from you Trazzle, but as the others have said, this is your thread so only post if it helps, not from some sense of obligation. We definitely don't want to be a burden for you.

Glad Joe is feeling stronger & hoping you are able to enjoy the sunshine.

Splodging as always. Much love.

superfluouscurves · 20/04/2013 17:02

Trazzles another one in Belgium where they don't trust mad-cow-era blood but we intend to contribute in other ways. Thinking of you often and saying more prayers too. Nothing feels enough though xxx

Juniperdewdropofbrandy · 20/04/2013 18:06

Good to hear he's stronger :)

The little boy I know is doing ok too.

Post when you can chick it's just good to hear updates when you have chance x

barefootcook · 20/04/2013 21:12

just wanted to check in and say I am thinking of you and Joe. Also, remember we are with you all the way and you should not feel any pressure to post. Lovely to hear that Joe is getting stronger and hope you are having a good weekend.

TeaMakesItAllPossible · 20/04/2013 22:35

I'm so pleased to hear that Joe is getting stronger. He's a good 'un that boy.

Jeez. I don't what to say but feck me your dignity and general amazingness just shines through your posts.

And, I would imagine that there are fewer than a hundred families who tread the path you're on each year - and every circumstance and child involved will be different. The circumstances, factors involved and decisions that they will make will be all different. It feels lonely partly because your path is as unique as your very lovely son. Your journey and MrT's are different so even that can be really isolating. In my own experience, traumatic experiences can leave you very lonely whilst not alone so I really feel for you.

I agree with the Dudes on the thread - this is about the Trazzles not us. Stop if it is a chore, if you want us to hand hold we will, likewise if you want a collective force we are here to be unharnessed.

You, your family and Joe continue to be in my thoughts.

Thumbwitch · 21/04/2013 00:45

So pleased to read that Joe is getting stronger, hurrah!
Post only when you want/need to - the thread is for YOU, not for us. We're just the supporting members :)

expatinscotland · 21/04/2013 00:55

Trazzle, you are not alone.

Original poster
Trazzletoes · 21/04/2013 09:16

Thank you.

I'm just really struggling to come to terms with how this lovely little boy who is so full of life and joy is going to die.

And how much our choice of treatment will affect when that happens. It would still be horrendous but that little bit easier if the Doctors just told us what would happen. I don't know how I can live with myself for making the choice, whichever one it is.

OP posts:
QOD · 21/04/2013 09:26

I'm not surprised. So bloody unfair.

:(

CabbageLeaves · 21/04/2013 09:30

Trazzle. Your choice will be made with love. There isn't a right choice. There cannot possibly be a right choice when the options are so horrible.

The Drs need to know what you want as an outcome (faced with limited and complex choices) and then advise what they think is the best way to get there.

Nowadays there is almost too much choice - placing a burden on parents

Think of it less like a choice... It's a strategy to do the best for Joe. It's never going to be your choice x

onedev · 21/04/2013 09:36

I'm not surprised you're struggling - that's a horrendous choice & not one any parent should ever have to face.

Hopefully the doctors will guide you in the appropriate way to get the least worst outcome (although all are awful).

I am truly sorry Trazzle & wish you so much love & strength at this time.

Badvoc · 21/04/2013 09:45

I simply cannot imagine what you and your dh are going through.
It is more than unfair.
Thinking of you as always x

StealthOfficialCrispTester · 21/04/2013 09:48

yes, it is really really unfair. I knew when you started your thread that you and Joe were in for a rough time but the thought the treatment might not work didn't really register - stupid as that sounds. Because it is so damn unfair.
And then you have the added burden of the decisions you, as his parents, need to make on his behalf. I'm so sorry Trazzles xx

SESthebrave · 21/04/2013 10:15

Trazzle - Cabbage speaks wise words. There are no easy choices but I am sending you strength and love and I know you will make your decisions in love.

ChippingInLovesSpring · 21/04/2013 10:23

Oh my love - it is completely heartbreaking and so very hard to comprehend, especially when they have a 'good' day and seem full of life and joy :(

It's not fair, not fair at all.

You and DH will make the best choices for Joe, because they will be made with love. There isn't a 'right' or 'wrong' choice - you can't get this wrong, you really can't because with treatment like this - there is NO right or wrong choice. Try to understand/believe that and hopefully it will bring you a little bit of comfort. All you can ever do is your best and you and DH will do that.

It's so fucking unfair, fucking cancer :( Angry

Lots of love and strength
xxx

ChippingInLovesSpring · 21/04/2013 10:25

...or... exactly what Cabbage said (so much better then me) I should have read her post first! x

CheerfulYank · 21/04/2013 10:27

Delurking to say I'm thinking of you and your gorgeous boy. Xxx

minmooch · 21/04/2013 10:37

((((((Trazzles)))))) the decisions we have to make for our children are decisions none of us thought we would ever have to make. The situation is so beyond comprehension. Any decision you and your DH make will be the best one out of a horrible lot, the one that is better for your darling Joe.

It is all so wrong and utterly unfair. My thoughts are with you often. Xxxxxx

blizy · 21/04/2013 10:55

Trazzle, it is beyond shit! I have no words that will make you feel better, must sending lots of love, hugs and splodging. X

saffronwblue · 21/04/2013 10:59

Thinking of you so much. There is no easy choice but you will make the right one because you are Joe's parents and love him more than words can say. A choice made from that love cannot be wrong.

As others have said please don't feel that you have to report in and update this thread unless it is what you feel like doing.

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