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.

I remember you too Trazzles, although I can't believe it was 3 years ago. Am so sorry that you and Joe are having to go through this again. Sending every good wish to you. So many rooting for you here when you need us.

Hi! sorry I haven't updated for so long. I haven't been on MN for a few weeks as real life has been in the way.

SPB do not apologise for anything I love you to bits!

It's really nice and very comforting to know you all care xxx

J has (so far) not picked up any bugs and everything is ticking along well. He's in to cycle 3 of chemo already. He's found this one a bit tougher and has been very tired but the side effects even with this are SO MUCH LESS bad than first time round. It is a much gentler regimen. As a result he's been at holiday club, we've had a few trips away for the weekend, days out etc that we would never have managed on the initial treatment. He's eating fine. His hair is much thinner and may need shaving soon but he currently still "looks" normal.

We had the first set of scan results today and they show that the chemo is doing its job and a good amount of disease has gone. There's still a way to go but it is definitely going in the right direction for the moment.

Thank you for all your support.,

Right direction is good to hear.

Thank you so much for updating. So very pleased to hear such encouraging news. Gingers for J !

Fingers crossed that it all continues to go well.

I've followed your threads for a long time under different names. I'm so sorry to hear this. Sending Joseph strength and love and really hoping he defies the odds.

Well done Joseph !!!!! Fight hard !!!

Hurray

Hurray for the treatment going in the right direction and for few side effects. Hope that didn't come across as insensitive

Yay :o brilliant update. Glad you are enjoying the summer and hope you are having brilliant weather too xx

What kind of holiday club is j at? My two have done a week of climbing and bushcraft and loved it so much

Yay! So happy to see this x

Nothing that exciting SPB ! Just his usual school childcare. He's enjoyed seeing his friends though.

It's been great that he's been able to do more normal stuff this time round - that bring the idea. He has a portacath in his chest as well, rather than the Hickman line he had last time, which means that he can get wet. It is so much easier for swimming, water fights, bath time... :)

Also, although it's obviously good news that the chemo is doing its thing, it doesn't change the ultimate prognosis. :(

Hi Trazzles. I'm glad that your Joe is coping better with the treatment this time round. It's hideous though because you do not want your child to have too many side effects and yet you want the treatment to be hitting the cancer hard. I felt tearful when my lad didn't suffer too much because I constantly worried that the treatment was not doing its job. I felt tearful when he was poorly. It's a no win situation.

I think of you often and hope and pray that Joe gets another stab at a miracle. Maybe sure that it is completely draining for you and I hope you get a chance to enjoy some moments all together. Xxx

Thanks for coming back to us Trazzles. Glad to hear Joe is coping well with this lot of treatment. It must be a real brutal conflict of emotions and feelings carrying on as normal whilst things are anything but .

How on earth you're doing this I have no idea and my heartfelt best wishes go out to all of you.

Do you have a fundraising or charity page? Or is there anything Joe needs or wants? I'd love to help, even if in a v small way.

I'm glad things are a little easier for him Trazzles, I have nothing but admiration for how you all cope

❤️

I'm glad the chemo is doing its thing. I hope Joseph has as good health as possible for as long as possible. Glad you're managing to do nice things as a family. I simply can't imagine what you're having to go through.

When does j start back at school? Been thinking about you as I do the normal boring back to school stuff.

Sounds good Trazzles. Thinking of you both and hope the rest of the treatment goes as well.

Much love x

It sounds like treatment is going well. No bugs is always good.

I know how hard it is, but keep doing what you're doing. When ds1 relapsed, we just kept going, living life as normally as possible.

I think of you often and send love and strength xx

minmooch I also think of you often and hope life is being kind to you x

I know I'm getting boring now ;) but still thinking about you all x