High dose chemo and beyond. Onwards and upwards hopefully!

[Trazzletoes]

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

So sorry about Joe's friend and his family, and the effect it inevitably has on you too.

But Joe is the tortoise in the tortoise and the hare. He will get there, but it might take longer.

How lovely he was on a recliner, even if it took it out of him, and how nice for your DH.

He obviously has an amazing constitution that not all his hair has fallen out.

It's just going to be a slightly different path from some others, because he has a different make up. I'm going through something a little similar with my DM who is more than fragile and has a condition whose extent should have felled her several times. But something underlying means that she struggles on, perplexing the medics but enabling them to treat her. No wonder the neutrophils are not as high as they should be if not all the cancer has gone; I am sure the experts will say that there is no correlation let alone causality, but Joe is prob fighting on a number of fronts. He is a complete trooper, and tortoise...

Don't worry about the arguments, we had them too when Ds was so ill for years. The best you can do is try never to go to sleep on them.

We tried to say sorry we had shouted, even if we still held to our views, and blew kisses down the phone (sentimental I know, but it helped) and said love you when we rang off, even if we were still fundamentally convinced of the other's stupidity, selfishness or incompetence. Just those formulaic noises helped.

Take care of yourself. Can your DM help you to get that retina seen to? Eyes are important. And toothache is hell. Ditto.

Thinking of you lots,

Hugs

DM can't help, no. She's got problems with her chest and is waiting for another x ray to confirm her last chest infection has gone. She's not been to see J at all during this admission as a result. We had hoped initially that she would be able to take the pressure off me during the week by helping out, and could have done the odd night but I've come to realise that just isn't going to happen. In retrospect, it was never going to happen and I shouldn't have pinned my hopes on it.

I know my eyes are important - I had a detached retina last year so obviously was only a couple of days away from losing sight completely in one eye. If I am sure it's doing it again I will get over to A&E immediately. My eye has gone a bit funny but I don't know whether its something that serious or just tiredness and stress and an out of date prescription on my glasses.

An amazing constitution is what I'm worried about.

Cancer is still his cells. Therefore if he has an amazing constitution, so does the cancer.

Sorry about your DM, you don't need the double worry and noone there. Is there someone else Joe loves and would tolerate other than your DH? It is so exhausting.

Yes, can completely understand that. But it may mean that although he may need more sessions of treatment/ higher levels, he is better able to cope.

But in your position, and as I did when Ds was ill, I would be worried sick too.

The thing is that every child is different.

Thinking of you all.

There's no one else who can come in and look after him unfortunately.

And there is also no "more sessions of treatment". If this doesn't work then Joe is in a heck of a lot of trouble.

Oh love :( It's all so fucking shit isn't it. I wish you were nearer so I could physically help you out (with whatever you need). It's such a shame your Mum can't help you out (I really hope they can sort her out quickly, poor love must be so worried & run down too).

It's very sad to hear about J's friend and my love goes out to them too :(

How is DD now?

You are a wonderful Mum and don't you doubt it - you are under enormous stress and you are doing your very best.

Ask everyone you can think of to help you out in any way they can - be direct, people will help if they know what they can do I'm sure.

Tell your DH how much you love him & how worried you are (about you and him).

Try hard to look after yourself - you need to be as well as you can be to get through this. Do whatever you have to do to get seen about your eyes - it's important. YOU are important.

Fucking cancer :(

Much love & strength
xxx

I'm so sorry, it is shit.

Do think second and third opinions etc, because Joe may well be unusual. But I am sure the consultants will look at every avenue.

Wish I were in Leeds just to give you a short break.

Do you have a Macmillan nurse? Are they able to get you some respite, just so you can get your eye seen? You need to be fighting fit. And I have no idea what a detached retina is (does your eye fall out?) but it doesn't sound good at all. Is joe still getting play therapy? Would you be able to get seen during one of those sessions?

I've just checked google maps and I can drive to where you are in 5 hours! Maybe not the most practical of offers, but its there anyway. Has your sister gone back home?

Have you been hit by the snow?

Chin up love, we will prop you up when you need it xx

Ah Trazzles, you sound really low I sometimes think people need to occasionally let themselves just feel crap and pissed off with it all and justifyibly ( spelling is well off ) so. You have every right to be royally fked off with the bastarding bollocking cancer and as ajandjjmum said it's taken out on those that are loved the most. To be upbeat and positive all the time is exhausting I imagine....
Struggling for useful words, again, so just simply huge hugs...thinking of all the Trazzle clan...and splodging away as always xx

And shouting is normal, just as I expect Joe is becoming a little more normal.and starting to test boundaries again. The cherub phase is for when they are feeling pretty under the weather at this stage.

Don't worry, he loves the whole you just as you love the whole him.

Thanks all. Ill keep this short because I really should be in bed(!).

No fizzy happily my eye is not at risk of falling out. Last year the retina which is on the back of your eye tore and started to peel off. Completely painless but if it goes completely there is no putting it back on. You're blind in that eye permanently. It was all fixed fine but my sight in the corner of my eye has gone wibbly. I'm keeping watch on it. Promise.

I've emailed DH and told him I love him and I'm scared that our relationship won't survive but that I've always seen it as us v. The world and never seen how we could do anything but win.

No DF. No in-laws. All dead.

my family is too far, DH's aunts/uncles would do it but they have never looked after him alone before even when he was healthy and would not be comfortable doing it, I don't think. Plus they run their own businesses and are extremely busy.

I'll sort something if it becomes absolutely necessary.

Last time I saw the Macmillan nurse, I cried. He sent the Chaplain down to see me. As something of a lapsed Christian, this just made me feel really uncomfortable.

P4B massive hugs

DH just emailed back: "there is nothing that can break us apart"

He's a good'un, that MrToes

Trazzle, I don't know what to say :( :( :(

So you shouted at Joe. OK, not what you would have wanted, but you are under unbearable, inhuman stress with little to no help outside you're nuclear family. Your eye's gone wonky, you've argued with DH, you've got terrible news from another family in the same boat, and you've got DD to worry about too.

You are doing your best. You care despite all of this stuff. That is enough. Don't be so hard on yourself.

And go to bed!

Oh Mr Toes. Good man.

He's a wonder.

So are you.

I was just about to suggest MacMillan but you seem to have been given the one with less EI than normal. They do have a phone line, I think, which you could cry on. Are there any others ?

And don't feel guilty about using a chaplain. I know several and with one exception they just want to be used, not to foist their views on you.

Does the hospital have a play adviser? We used GOSH's from time to time to provide a gap.

Go to sleep if you can, and if you can't sleep, be aware that around the world people are Splodging for all of you.

((huge hugs))

xxx

I'm so sorry to hear about Joe's friend. It is heartbreaking . We lost two children from the time my son was in hospital - I feel extreme sadness that they died and extreme guilt that my son is still here - hugely conflicting emotions.

I am sorry that you are arguing with your DH - you are both under enormous pressure, the likes of which no couple can be prepared for. I am sure that you are taking out your anger and pain on each other, as that is what we do.

I too have been cross with my son - you are only human. Your son knows that you love him.

I'm sorry too that your DM is unable to help you at the moment. It all adds to the pressure you are under. It is so hard to look after yourself under these circumstances but you need to in order to be well enough to look after Joe. You are in an impossible situation.

My thoughts are with you xxx

He is a good un & so are you. Be kind to yourself - you're a fantastic mum & Joe & your DD know that & will feel it in their bones.

Hope you get some sleep.

I'm really off to bed now..,

DD is fine, thanks all for asking. I don't think she's been sick AT ALL this week! (Although DM is convinced she has a chest infection... But I'm equally convinced she doesn't. No doubt ill be wrong!)

Chaplain is lovely. The guilt is my fault, not his.

Yy to play staff. We are lucky and have many. I get a short run out most days but times and length of time aren't guaranteed so I can't really rely on them to cover an appointment for me IYSWIM. They are wonderful though.

Trazzles, what a fucking awful time. Massive splodge. XX

((((Trazzles))))
I have no words, just love and prayers, much light splodging from Australia.
MrToes is lovely. It's not surprising that the stress you're all under is releasing in fights.
Just know that you love each other just as hard as you all can - and always will. xx

Sending prayers from manchester.
So sorry about your friend. Don't be hard on yourself trazzles, none of this is your doing. Joe will get better - from your posts i can tell he is a fighter.
Get your eye checked out, do it next time dh is watching joe.
Xx