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Original poster

Does anyone remember my little Blue-eyed Joseph? Bad news and I could use some support, please.

800 replies

Trazzletoes · 27/06/2016 19:51

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.

OP posts:
Original poster
Trazzletoes · 12/01/2017 14:08

Yes he does understand, as much as a 7yo can. He doesn't know cancer can be fatal but he knows about the trial, he knows about his treatments and how they work. His Consultant is exceptionally good at explaining things and Joe asks a lot of good questions.

OP posts:
Waterfeature · 12/01/2017 16:03

I'm so, so sorry. Another cancer mummy here (my dd was having treatment at the same time as Joseph).

Dd was treated at GOSH too. She's a very spiritual child. I'll get her to pray for Joseph and I will too.

WheresMyCow · 12/01/2017 16:24

Don't come on here much days, and almost didn't want to look when I saw this thread in active convo's. Cancer is shit and needs to do one Sad

There is nothing really to say, only that I am thinking of you all and hoping for a miracle Flowers

minmooch · 13/01/2017 06:12

Just seen your updates trazzles I'm sorry the chemo didn't obliterate the cancer

We had this with my boy. He was old enough to make the decision to go for last ditch/hope chemo. Neither his dad nor I wanted him to but had to respect his wishes.

At some point you will know if he has had enough and you will make the decision for your darling Joe. I know of some, relatively few, who at that point, treatment stopped, have made a miraculous recovery.

My view is that we do all we can but the reality is out of our hands how each tumour/cancer reacts.

I think of you so often. I hope with all that is within me that your Joe gets that miracle. None of the children deserve to suffer, nor their siblings watching, nor their family.

Love, strength, hope, peace to you and your family xxxx

nottakenpersonally · 13/01/2017 06:27

So sorry to hear of your struggles. Words just aren't enough. I will pray.

sandgrown · 13/01/2017 06:33

Will say a prayer for Joseph and your family .

HNY2017 · 23/01/2017 22:27

Hope everything is going as well as poss trazzles...

SqueeGeeGee · 25/01/2017 12:20

Thinking of you and your family, Trazzletoes, and sending love.

nether · 01/02/2017 06:51

I noticed it's 1st February today, and thought of Joseph, as you posted about a month ago that he goes into the trial this month.

Does that plan still hold?

Whatslovegottodo · 08/02/2017 18:14

Thinking of you all Trazzle family. Hope the trial can go ahead and is successful. Flowers

HNY2017 · 16/02/2017 18:52

How are you all trazzles?

ExtraHotLatteToGo · 16/02/2017 19:31

Trazzle. I'm never sure whether posting on the thread makes you feel cared about or upset (if it apears when you're not expecting it to - though I suspect you're not on MN much), but as it had been bumped I thought I'd drop in & say 'Hi'.

There are so many of us here, who were on all of your other threads and hold you all in our thoughts & hearts. Please don't feel any pressure to post, just know we are here, thinking of you. Sending you strength & love and hoping beyond hope for a miracle for 'our' little Joe.

I hope you know, if there is anything we can do to help even a smidge, you only have to tell us what it is and it'll be done. Big or small.

Much love to you all, as always
Xx

minmooch · 25/02/2017 20:48

Just thinking about you Trazzles and you blue eyed Joe. Xxx

barefootcook · 26/02/2017 02:57

As the other posters have said - just wanted you to know that you and Joseph are in my thoughts.

nether · 28/02/2017 07:13

At the end of February, thoughts still with you

Breadnroses · 07/03/2017 20:44

Just popping in to say I'm still thinking of you all lovely Trazzles.
Sending much love and strength Flowers

monkeyfacegrace · 30/03/2017 20:55

Just checking in to say I've been thinking of you loads. Hope J is doing okay in himself. And your DD, and of course you too x

SparePantsAndLego · 02/05/2017 20:45

Another someone just stopping by. Hope you're all bearing up.

Yika · 05/05/2017 20:47

I have never posted on your threads but I remember you from the first one and I often think of you and Joseph, and hold you and your family in my heart. Flowers

ajandjjmum · 13/05/2017 08:37

Another one hoping that things are going well from you and Joseph.

BehindTheBlueDoor · 13/05/2017 13:11

Another one stopping by to say we think of you often and send you all good wishes.

RainbowInACloud · 14/05/2017 14:25

I hope things are going okay for you, I think about you and joe and hope he's doing well

Original poster
Trazzletoes · 02/06/2017 23:45

Hey. I thought I should update. Thanks for your comments. I do read them.

Last week, J was moved on to palliative care. He has a couple of months at best and it's utterly, utterly shit.

We've had to pop to hospital tonight for a platelet transfusion as his little body has basically given up on making any blood cells. So if you donate blood or platelets - thank you.

OP posts:
Latetobreakfast1 · 02/06/2017 23:50

I dont post but read and send silent prayers......sorry for your shitty news.

TheFallenMadonna · 02/06/2017 23:53

Oh that is shit indeed. Thinking of you and yours.