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.

How has the weekend been?

I am so sorry to read this thread Trazzle I am here, and am thinking of you and Joseph

I remember you both very well.

It's so cruel, I'm so sorry

The weekend has been lush thanks SPB. I did a 10k run to raise funds for the charity attached to the ward and ran a good amount of the way so pleased with that.

Joseph has been really really well. As in, a bit tired, but otherwise you wouldn't know anything was up. He has had a little bit of chemo today and next has treatment in a fortnight. He's had another platelet transfusion (thank you, donors).

It is so hard to reconcile the fact that he is so well and objectively normal with the knowledge that his body is very sick. We have good hope that the chemo will do its job this time and it's an added bonus that he's well enough to enjoy having fun with his sister and family days out.

Oh, and we found out at hospital that he's neutropenic today - his body isn't making enough white blood cells to fight off infection. If he gets a temperature, we will have to stay in hospital for a couple of days. So fingers crossed for no fever!!!

Fingers X trazzles xxxx

Or gingers crossed, natch.

I remember your little boy! What a absolute fucker cancer is. I hope you have as many great days as you can while he is in treatment and he comes through this well.

Giving two fingers straight to cancer and have booked my blood donor appt for me and DH.

Crossed gingers here

Crossing gingers

Checking in with my gingers crossed for no infections

Gingers have been crossed.

How is lovely joe doing today?

He didn't run a fever but instead got very very cold so we have been in and out of hospital for the last couple of days and he's on antibiotics just in case. Back at school today. The uncertainty of everything going on is a killer!

Oh no :(

How was his day?

How are you all doing?
(Tell me to go away if you feel like I'm harassing you btw ;) you're never far from my mind but I don't want an update so much as I want you to know that)

Oh Trazzle - I remember your posts vividly and often thought of you.

I'm so so sorry to read your news. I have no sage words of advice but wanted you to know I'm thinking of you.

I can also recommend 'Bach flower rescue remedy' as an aid to help keep your thoughts or anxiety from overwhelming you. I find it really helps me in times of absolute emotional turmoil

How has the weekend been for joe? Does this sun/heat make things better or worse? I hope he's able to enjoy the end of term madness with his pals!

X

X

Trazzle I really hope the antibiotics have done their job and he's managing to enjoy some holiday x

Been thinking about you all today

I'm so sorry to read this news Trazzle. Am thinking of you and the beautiful Joseph.