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.

Thanks all (and hi lovely fledglings!!!). Joe is holding up really well. He went to Beavers tonight and had a great time. He doesn't seem to have had many side effects, so they expect that that will continue next round.

I'm taking him in tomorrow for a blood transfusion and possible platelet transfusion as well. If you give blood, thank you so very very much.

Then on monday, 1 day of chemo - I think he had his worst reaction to that drug - horrible headache, to the point they worried he may have had a stroke (it's a potential side effect although not one he was at risk from as far as could be told).

He's so bright and cuddly and lovely. I can't understand how this has happened to him.

I remember your little Joseph (and his love of penguins). Little soul xxx

I remember you and your boy so well Trazzles. I can't believe you have to face this again.

You've just reminded me to book a giving blood appt in the summer hols.
Sending love to the Trazzle family x

Thank you leccy

God op . I'm so sorry . how is your little guy?

Reminder to give blood for me too

Hugs for you and your lovely boy

Oh no trazzles. I recall your little Joseph too. I remember you writing about how he used to hold your face and look deeply into your eyes and tell you he loved you. Such a little gem. I read all the threads and your love and fear was heartwarming and harrowing at the same time.

I have no idea how on earth anyone begins to deal with this.

Come on little man. Knock this bastarding disease to the ends of the earth.

Love from the Essex riviera

I remember you and your lovely boy well and still think of you.

I'm really, really sorry that your fight is back and I am sending all the love and prayers and support in the world.

Much love

So sorry this has happened to your beautiful boy, yours was one of the first threads that stayed with me. Was hoping for a bright future for you n your lovely boy
Sending love and prayers x

I'm carrying my give blood letter around with me so I get to it at some point. Will book today

Argh have called but struggled and registered online but it won't now let me book online . I will persevere. You and j are continually in my thoughts

Apparently the lea are supposed to organise an ed psych assessment for the EHCP within 6 weeks. I learnt this today, about 12 weeks after we sent off the application and no assessment has happened! The lea aren't impressing me so far

Shit wrong thread completely!

Thinking of you all and everything crossed its going as well as possible.

Blood donation booked. Will be thinking of you.

Oh no - I remember those threads very well. Sending lots of good wishes and prayers.

All good here. He is so very well, it's all hard to believe and so different from last time when we were constantly sleeping in the hospital. School disco last night, tennis this morning...

He may not lose his hair this time but if it does go, it will start this week. Who knows - he has been very lucky and had very few side effects so far (and they would be expected by now).

sirzy no worries!

Greetings TO the Essex riviera...

Thank you all for signing up to give blood. Encouraging people is one small thing I can do (and everyone can do) to help. J is one of the faces of platelet donation in our area so it's massively important to us.

Tragic news and makes me want to kick Cancer in its bastard balls!
You and your Joseph sound amazing and have the right attitude to fight this and win.
Sending you all the love and light in the world - and will also be giving blood thanks to you xx

I remember you and your lovely boy. x

I met a lot of children with neuroblastoma when I was in a lot with expats dd. I know some went to Germany for treatment on the NHS - is that or similar being considered?

Glad to hear he's full of energy

Hope he enjoyed the school disco.

Trazzle - I signed up to be a blood donor because of your Joseph and expat's lovely daughter. I think of them every time I donate. I am sending him and you all kick-ass best wishes xx

Hi giraffes it's not something we are really considering at the moment. Joseph has the loveliest Consultant in the world and we absolutely trust him. The hope at this stage is the drug combo will clear the visible disease and hold it at bay for some time - another child on the same trial is 2 years NED at the moment. They expect it to come back and hopefully then there may be more options in the UK.

At the moment, he believes that there is no evidence that any of the trials going on in, say, the US show enough evidence that they are making a significant difference. He knows that our point of view is that we don't want to separate our family across the world unless there is a very real chance it could save Joseph's life. So for the moment, it's our choice not to, but we aren't ruling it out.

I think that's a very sensible stance Trazzles. If there is a strong reason to go that's different but if at all possible it's best for your ds to have as much normality as he can and that includes everybody being in their usual place.

Normality sounds good!