Joe vs. The Cancer

[TrazzleMISTLEtoes]

My 3 year old DS, Joseph was diagnosed with the cancer Neuroblastoma in October.

Survival rates are approximately 1 in 3.

He's coming to the end of chemo and so far, chemo is kicking cancer's butt. 3 cheers.

No we get the results some time in the new year. It will be either:

Chemo has worked great, lets move on to the next stage, or
Chemo hasn't quite done enough, lets have some more, or
Chemo has already stopped working, the cancer is growing.

I am exhausted and I don't know when I'll get to wrap the presents! People are coming on Saturday and Sunday...

All the tests that are left are under sedation or general anaesthetic so involve fasting, which he doesn't like, obviously! He doesn't much like being made to sleep but he doesn't kick up too much of a fuss really.

All fingers, gingers, everything crossed, for good results.

Hope all the tests go as smoothly as possible.

Maybe some of the people coming can help wrapping?

Hope you all have a wonderful Christmas break and a well deserved rest.

Help?! I wish! Half the wrapping is for them!

My 3 best friends here are coming on Saturday. Including my 2 there will be 12 children... It was not my idea. I am not letting them loose on my presents!

Sunday we are entertaining DH's brother, his fiancée and her daughter. Today I realised I had forgotten to order daughter's present. I know she will be stoic if it doesn't arrive in time but I could kick myself. They are taking back gifts for the rest of DH's family.

Joe has another general anaesthetic on Monday of course so I really don't know when I'll get it all done! Ah well, it'll happen somehow.

Hi Trazzle,

Not posted for a while but think of you often. Nice to read the latest updates, love the hairy fairy!!

Glad to hear Joe is doing as well as he is and I hope your Trazzle get together is a great success.

Still splodging from Surrey
xx

Really pleased its going well - fingers / gingers crossed it all goes ok.

trazzle my darling, I say this from a place of love, respect and kindness

WHAT ARE YOU DOING TO YOURSELF?????

You have more than enough to deal with looking after Joe and going back to work.
Now it seems you are baking cookies, hosting enormous gatherings, wrapping presents, having dinner parties.
Is this all a distraction? Is this who you are generally? Are you always a 1000 mile an hour person?

I am slightly worried that you are just trying to do too much and hope it is not because you feel you OUGHT to.

Please remember that this was said with love when you tell me to bugger off ;)

Bugger off Norks

I am lazy as hell. There are no dinner parties. We usually see all of DH's family but have agreed that's too much this year. If we're feeding DBil it's DH that cooks. They expect our house to be messy, but presents need to be exchanged!

As for the kids, well, I suspect my friends invited themselves over thinking it would be easier on us if Joe didn't have to go anywhere... It's not easier. It's really not. But because I live the other side of the city from them all they like to come this way in the holidays for a change. I never host normally because they have to get back for school runs. The mums expect a pigsty also. It's the kids that I'm worried about! Being children, there is always something to comment on... Why is Trazzle's house so messy? Oh, is Trazzle pregnant (this from last year)? I didn't notice because she's always been fat...

They're coming first thing on Saturday so I'm sticking a festive DVD on and force feeding them sausage rolls. The children will tidy up before they leave.

The cookies were done in half an hour but I really wanted to make something for the nurses.

And my friends did want to meet at a soft play first but he'll will freeze over before ill take Joe to one of them with his shot immune system.

I don't really want you to bugger off Norks! This week is flat out then relax on Christmas Day.

Why did I say if been baking all night?! It probably felt like it... But genuinely was only half an hour!

OK ...just checking that you really know what you are doing and are not being steamrollered

Will NOT bugger off, thanks, but will just keep a BEADY EYE on you

I will be sending you positive thought and light from Colchester in Essex that joes tests give the best possible results. Have a wonderful Christmas and I hope you have some peaceful time as well as manic!

Blimey! You sound like Wonder Woman at the moment!

I'm sure the nurses appreciated their biscuits though. How did you find going to work?

Fingers crossed for positive news after all these scans are done.

Bloody hell Trazzle.

If you're lazy then I'm never having another cup of tea again

Ahhhh. Other people's children en masse. It's hell on earth! Gin. That's the answer. That and hiding for prolonged periods of time in the bathroom. I tend to turn into a fishwife if we have more than 9 in our house.

Cookies. I'm trying to make a fecking gingerbread house and it is taking me all evening. The fecking recipe said two batches of dough and it's needing fecking three. I'm missing half a roof and I know once I stand it up it's going to fecking collapse. Half an hour? Cookies next time for me!

Seriously, you really need to relax for more than just one day with everything you have going on. You need to look after yourself.

DH has 2 weeks off work. I will have my fair share of lies-in.

Scan went ok today. Fingers crossed for the results.

2 more Santas(!) visited the ward today. But they weren't the real one. They were just helping Santa out.

I don't know why he needs helpers? You are doing more than him without any You know, you can say 'No - it's not a convenient time to visit'

I couldn't face all that and I don't have a child in hospital - we'll need to get you a cape and make you wear your knickers over your tights

Fingers very firmly crossed!

Agreed that you need knickers over tights!

As always, fingers & toes firmly crossed & hope you enjoy the lie ins!

Hi Trazzle
I've lurked on your threads about Joe before but wanted to delurk to let you know there's a splodge of light in Paris cheering Joe on.

I have to say that he sounds absolutely delightful and your story has really touched me.

I have a little boy at home who is my world so I can't begin to imagine how you're coping with this.

I hope you all have a wonderful Christmas surrounded by friends and family (sounds like you don't have choice in this! ) and that Joe keeps fighting his fight.

Not posted for a while but have been checking up to see how Joe is.

I honestly dont know how you are doing all of this, dont forget to try and take some time for you.

I hope you and your family have the most wonderful, amazing christmas and that next year brings you nothing but happiness :)

And here I was feeling peed off that dd2 (4) has a temp and rash and missing her school pantomime, hence me missing loads of plans for today plus a mega weekend that will probably have to be cancelled.

I'm now turning into a positive and going to make the most of it.

Trazzle, I don't know you or your family but have stumbled upon your thread. You seem like an amazing woman with a wonderful family. Sending you lots of Christmas wishes and I'm keeping everything crossed (including my gingers) for a wonderful and healthy new year and that the results are what you and all of us are hoping for.

(Hugs) to you, Joe and the rest of the family (including the cat!)

Still here, still thinking of joe and you and still praying for you all.
Here's to a happy and healthy 2013 xxxx

good for you - and hope that all goes well. Ignore children. that is what they are there for. and when they say how untidy it is, you say " i am a HORRID WARNING of what will happen if you do not tidy up when your mother tells you to.." and you pass the sherry to their blushing mothers.

keep as sane as you can and enjoy what you can and hope MOnday goes well.

Good luck with the scan results and I hope this weekend goes smoothly. x

I hope all the Trazzles had a lovely day with friends and family today and that you get some well deserved rest during the rest of the Holiday.

The last few days have been fine. Going back to work was odd but I enjoyed it and am now looking forward to getting stuck in a bit more next week.

Joe's scans have gone without a hitch. He is normally awful when he's hungry (he has anaesthetics or sedation for scans) but has been so good this week. No idea when we will get the results as yet... Early January, I assume.

He got visited by another 2 Santas yesterday and 1 today (who also brought along Peppa Pig and some people from the X Factor to sing some carols!). He now has so many toys and so much chocolate it's a little ridiculous but it has brought such a smile to his face.

Also learned today that Joe does qualify for DLA. That will start to pay in the New Year which will really help.

DH and I have fallen out again. . I'm fed up with it. I'm fed up with it all but I refuse to apologise for something I haven't even done. I hate going to sleep on an argument. Really hate it but I always give in and apologise, mostly because it is usually my fault. This time it's not.

And he's just lumped more work on me. If that were even possible. Fed up of it.

DM has been sick for weeks.

Everyone seems to need me (except DH who seems to manage fine on his own) and I feel like I'm slowly being sucked dry until I turn in to a little prune and there's nothing left.

Nice that Joe has met Santa and help Santas and that he enjoyed getting his toys and chocolate. He looks such a lovely boy. It must be so nice to be able to make him smile.

Also very good news about the DLA and your first day back at work. Maybe your work can provide you with sufficient distraction so you can oddly enough have a bit of a rest (whilst actually having to work) and being with colleagues may be a relief at times as well. I hope that you can make it all work for you and that it does not tire you out even more.

Sorry to hear that your DM is ill. Hope she gets better soon.

As for DH, if at all possible, could you sit down and have a chat about how you both feel? If not possible, would you be able to write it down so he can read it when he is on his own (and maybe less defensive).

You, as a family, are dealing with an awful situation, something none of you could have foreseen, it has been thrown at you and you are dealing it best you can. It seems that at the moment most is resting on your shoulders. I think that this often happens in these situations, in part because ill children often want mummy most and mothers often take the lion share of care on their shoulders. It is very hard to have to deal with this and then on top of that with DH. Very understandable. He may not even realise he is doing this though, he may be under the impression that he is doing a lot (which may very well be the case compared with what he did previously, but still only be a fraction of what you do). Not sure if it would work for you but trying to talk about it one way or another may reduce the risk of bigger problems in future.

Thinking of you.