High dose chemo and beyond. Onwards and upwards hopefully!

[Trazzletoes]

Another continuation thread for Joseph's ongoing fight against the aggressive cancer, neuroblastoma.

I'm sorry. Thinking of you all.

Trazzles, sorry no year Joe is still so poorly. I am thinking of you all and hope h pick up soon.x

So sorry to read the latest. Come on neutrophils! Splodging hard for all of you.X

Oh Trazzle, I don't know what to say that hasn't already been said but I pray and think of you every day. I hope they can sort his thumb and digestive system out and that the VOD remains mild.

I bet you loved every second of holding him in your arms for those 30 mins - hold on to that while things are tough.

It's shitty that DH can't go but you are making the right choice. I'm sure he could have done with the break and I hope DD is soon well xx

Trazzle, I read your posts and can't imagine the actuality of what you're facing.

Praying for Joe to stay as strong as he possibly can, praying for those neutrojobs to keep doing their thing. Praying for you too Trazzle x

Trazzle I hope the weekend brings better news and more cuddles from your boy. I will be thinking of you.

Hi. Another steady day. No better but no worse.
He keeps crying because he's so thirsty and he's not allowed to drink

His thumb still looks manky but it is starting to itch so I guess that's a sign that it's starting to get a tiny bit better? Poor Joe has said he's never going to suck his thumb again. Although I wanted him to break the habit I feel so sad for him because it was such a source of comfort for him

I had a good chat with his Consultant today who said again that nothing will really change until his neutrophils start coming up. That's the source of all goodness. Predictably, today they have slipped a little again.

He is just so unhappy, poor little lamb.

It's crazy thinking that we may not even be halfway through this admission yet.

DH and I do get to see each other for an hour or so at the weekend and about once a week we eat dinner together. I just miss the total normal mess of hanging out together. Talking to him whenever I want to. Sitting next to him on a sofa.

He will get through this. It is just so painfully slow. There is a good chance we will still be here, in this room at Easter. I'm actually going mad.

:(
Poor joe.
Thinking of you as ever xxxx

Oh trazzle, really feel for you all (understatement alert!)
Don't know what you have with you there or even what you are allowed to have, but can you get some stuff to watch on an iPad or something, with headphones for when Joe is asleep? Can recommend the US comedy series, Modern Family?
Just thinking of ways in which you can be distracted for a while. X

Oh Trazzle, you are doing so well. My mantra has always been in tough times, 'This too will pass'..it won't be like this forever. Chin up, focus on the little positives and remember none of you are alone x

My other stalwart companion is 'Where's your stiff upper lip? Right above my lower wobbly one'

Poor, poor Joe and how heartbreaking that he feels so thirsty and is not allowed to drink

Very much hope that his neutrophils start increasing soon.

Thinking of all of you and wish I could do something to help a tiny bit but don't know what

I know one thing Trazzle - you will never ever take the simple things for granted again. Sorry Joe is still so miserable but hope he will soon show an improvement. Take care of yourself.

This really is a tough long haul. It's so cruel that he wants to drink but can't. He's just too young to understand why and that must be heartbreaking.

Fingers crossed his itchy thumb is the start of it healing.

I'm sure those neutrophils are just having a slow Friday and will perk up again over the weekend - my gingers will stay crossed.

Is there anything that we could send to help at all? For entertainment, hydration, snacks anything for Joe? Please pm me if there is.

dinky thanks, we have an iPad here, and the hospital provides a computer and Internet. We also have a tv and DVD player. Plus my crochet so I'm fairly well catered for! I just find it hard to believe that life is going on as normal for the rest of the world. Even DH gets to go round the shops in his lunch hours.

The play staff here are amazing and, when Joe let's me, I can usually run out to 1 specific shop for 1 specific thing.

Joe is still within the bounds of what they expect. I just hate seeing him so sick.

"Joe is still within the bounds of what they expect"

Keep repeating that to yourself, over and over and over. It's the good news hidden in there, right?

Wouldn't it be wonderful if you could transport the bed and the staff to a Swiss mountaintop or a viewing point in the Serengeti? You must feel so marooned and claustrophobic in there. Maybe there's something in this flying bed concept?Some lovely fresh air would give those neutrophils a boost too.

Thinking of you all and hoping for better days v soon.

Ooh many moons ago we went to visit some of DF's friends in Switzerland and they took us to a spa high up in the mountains... I could properly do with another trip there right now!!!

Trazzle - what srikes me through your posts is how sane and focussed you sound - and horrible as all of the side effects of the treatment are "Joe is still within the bounds of what they expect" is good news isn't it?

I wish I could transport you all to a spa high up in the mountains :(

That spa sounds idyllic! Really hoping the itchy thumb is a sign it's getting better. I always remember my mum telling me if it's itching it's getting better...and so that's what I now tell my DDs. No idea if it's actually true or not?!
Anyhoo - realised I write drivel, just deleted a load! Suffice to say the long and short of it was... still here, still wishing good things and still thinking of you xx

Thanks.

bob that's the first thing I said! And the nurse agreed with me.

spa the view from the outdoor pool was spectacular!

I am not sane - anything but! Had a little cry at DH today. Must not go properly mad yet, there's every chance we're not even halfway through this yet!

Have been lurking out of not knowing what to say, but thinking of you all.

Looks lovely.

Don't know if it exists, but something like that in a nice warm environment would seem even better to me (don't like cold places).

And yes, itching means healing.

The itchiness is caused by the growth of new tissue, as a result nerve cells are being stimulated which causes the itching sensation.

Wound healing is a very complex process, a few years ago, a Scottish scientist discovered that the inside of the wound has a different voltage than the margin, resulting in cells following the electrical gradient during the wound healing process. This is how cells find the base of the wound.