Joseph's last thread? Here's hoping...

[Trazzletoes]

My now 4 year old DS, Joseph, was diagnosed with stage 4 high risk neuroblastoma last October. It's a particularly aggressive cancer with an 80% relapse rate. Long-term survival statistics are not great.

Joe has had 8 cycles of chemotherapy, an operation to remove the main tumour, stem cell harvest, high dose chemotherapy and stem cell transplant as his bone marrow was destroyed, 3 weeks of radiotherapy and now 5 1/2 months of differentiation therapy and imunotherapy.

In April we learned he had relapsed and so had a 5% chance of ultimately surviving. Then, the relapse spontaneously un-relapsed but we don't know for certain what this means for his future. Whether its good or bad news.

He remains bright and cheery and gorgeous throughout.

I am sorry Trazzles.

Oh Trazzle, so sorry, yes it sucks. Bugger.

But we are still Splodging for you. Said prayers for you all today. How is dd ?

She's much better thanks. Still not 100% but I think this week has shaken her up. She's felt rotten but the 2 people who she should be able to rely on most have barely seen her.

I'm scared we are giving her extra trauma to grow up with. That we are scarring her, that she feels unloved when she is SO loved and so wonderfully precious to us. She is perfect. They both are. I worry that she will grow up always feeling that she is "Joseph's sister". She is such a wonderful person in her own right. I hate not being there for her. She needs us too.

She will know she's loved, no doubt about it. She'll also know that she has a mum & dad who will do whatever it takes to give their children the best possible chance & never give up on them. She'll just feel that as thankfully, she's too young to remember all the crap that you're all having to go through.

She'll also grow up thankful that she has a typically annoying big brother, who drives her crazy, but who she loves with all her heart (& hopefully will have good looking friends!).

So sorry things are so shit - sending much love as always & just wishing there was more we could do for you. xx

6 more weeks, wow, really hope it goes as well as can be.

Sorry that Joseph has to stay in tonight, hope he's home tomorrow.

Your DD knows you love her and how precious she is to both of you. I know that won't stop you feeling guilty but honestly I doubt she will grow up to remember much, if any, of this time. She has so many people who love and care for her, that's what she will grow up knowing and feeling secure in.

Big hugs x

Buffy and One are right. There were big ishoos in my family when I was one to about three and I can't recall them at all, all I can recall early on are the normal toddler things and how lovely it was to sit on my DF's knee and have stories told by him.

Hope you aren't awake at this moment but if you are, know that you are being thought of.

Hi Trazzles. Hope the lovely Joseph's been able to get home now. And, if not, that it'll happen very soon.

DD will know - from all manner of unverbalisable clues - how much you love her. Your and your DH's love for both of your children manages to radiate warmth, intensity, ferocity, depth (I'm sorry for the inadequacy of these words) even over the impoverished medium of an internet forum. DD and DS will feel it every minute of every day.

He did get home.

For 6 hours.

Now he's back in with a chest infection as of last night.

We 're not on our usual ward and it is extremely stressful.

So sorry you're back in hospital. And a different ward on top of it all. Is there any chance they're going to move you to the usual one?

That's rotten Trazzles - so sorry you're having to deal with a strange ward on top of everything else.

So sorry to hear that Trazzles, that's crap. Hope it clears up soon.

How you getting on Trazzles? How's Joe ?

Tired and frustrated. Still in isolation on the "other" ward. A nurse pops in every few hours. And then pops out again.

Still, I'm off to work tomorrow.

Joe is doing ok. The drs have differing opinions on whether he has a chest infection or excess fluid around his lungs. They have him on antibiotics. I think its a bit of both. His temp has stayed down since Sunday night which is good but he needs to manage a whole night without additional oxygen.

He's fine during the day but once he's asleep his sats drop. The drs thought we'd be going home tomorrow but have now said realistically it will be not before Thursday.

I miss my home. My husband. My DD. My sofa... Desp need to tackle the washing pile! I'm just so tired...

Gosh trazzles, I remember that very first thread and I always think of Joe when I see your name.

I can't imagine how difficult life is for you and your family at the moment, but know that I am wishing you all well and keeping you and your beautiful boy in my thoughts.

Thank you

Yup. Remember that map of lights. They are still there for you all..

Hope you get back to your ward if you have to stay. Wish I could do your washing for you.

Just popping in with a long overdue splodge (temporarily relocated to Brighton, but normally in Malvern)

I still think about you and Joe every single day, every time I see a little cheeky boy, every time I see/hear/read/think about blood donation, every time I see a snail . He has a little place all of his own in my heart.

Thank you for sharing him with us all, and, as always, gingers crossed :)

Splodging in Bath for you and your boy too.

I think about you all everyday too. I think of you when I have a couple of tea, when I light my candle and when my Ryan is being cuddly which isn't that often to be honest.

I wish I could gift you a long sleep and do something to lighten your burden.

x

(shorthand for "everyone else has said what I'm thinking but I'm still thinking about you and Joe")

Me too Trazzles I often think of you and your little family. It's horrible being torn between your children I spent 5 and a half months in hospital with eldest DS. The ward was closed to school aged children for most of that time (Noro virus risks) and I only managed to get home one night a week to see my other DS. He was older so he understood butit was more emotionally hard for me. We got by using skype.

Much love to you and yours. Xxxx

Such a trying time for all of you :( Still splodging and thinking of you all often. xxx

Thinking of you. Very much hope you get home tomorrow xx

Just adding to the chorus of people still thinking of you. Your Dd will be ok. She knows she is loved, children just do, even if crap that life throws at us stops us giving them the life we want to. Love to lovely Joe. I hope you are all together at home again soon xx

Quick update: we're all at home tonight (for how long though?). Joe did marvellously last night and didn't need oxygen so was discharged today. He is so happy to be home.

HOWEVER he is (and has been) really suffering with D&V - side effects of the treatment. He was thin to start with. He's lost a ton of weight this week and all his bones are jutting out. Unless his stomach speeds up and his gut slows down in the next 24 hours of so, he will be straight back to hospital for fluid and nutrition. He needs it but that will mess up his liver again and delay his treatment.

Going back to hospital now will be a huge setback for him. Please - I know I ask a lot of you all - but any prayers/ positivity etc is so welcome at the moment.