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.

Fritters (especially pineapple and a NZ favourite, potato) are much nicer than gritters

I haven't posted a lot lately, but thinking of you every day. I hope you got my PM replying to yours a while back, about the CP thread?!

I can't believe you are still working - you are a complete star, I'd be good for nothing!

Thanks chipping in yes I did get it, thank you. I have warned DH and DM to be aware.

Enough snow overnight that it looks like we won't make it out for DD's other party today... Oh well!

Thinking if you all Trazzle and family. Sorry the snow has buggered up all you DD's party plans but what can you do? I will be hoping and praying for you that this week goes well. Xxxx

Happy Birthday to your DD and still thinking of you in the SW.

Another one wishing a Happy Birthday to MiniTrazzle today. I'm sorry about the party plans and I hope you have a lovely day regardless. DD won't know any better and will just be happy to be with you, DH and Joe.

Happy 1st Birthday BabyTrazzle

I had a pea fritter and chips for tea just now, 'twas lovely

Thinking of you always, sending you lots of love xxxx

Happy birthday minitrazzle
Hope you have all managed to enjoy the day. Little one won't mind a jot about not having a party, I'm sure she's enjoyed playing in the snow more anyway x

Wishing you lots of strength - hope the operation tomorrow goes as smoothly as possible.

Thinking of you.

x

Another happy birthday for miniTrazzle . Splodging away still here.

Just wanted to let you know I will be thinking of you all tomorrow. Xxxxxxxxx

Checking in and splodging still. Hope MiniT had a great birthday and will be thinking of you over the coming days xxx

Thanks all, Joe and DH are ensconced on the ward ready for the morning. We are finally being given information about the operation. For example ( I'm a bit dense): I thought the scar would be on his back. It's not, it's on his abdomen. He's going to have a million and one lines in to various parts of his body. He's not going to be able to eat for a few days...

The surgery ward is absolutely crazy. I'm actually hoping Joe DOES need ICU afterwards just so we don't have to go back there. It's massively cramped, with 18 beds. You can hear every one of those 18 children at any time. We are used to 4 beds in a bay with doors so you can only ever hear the people in with you. The facilities are really bad - you have to go on to another ward to use the toilet!

Joe needed the dressing changed on his Hickman line. When I told the Nurse that Joe cries when the dressing is peeled off, he announced that I could do it and walked off for 5 minutes . Well, I can do it, and I did, but surely that's not the point?!

(And my personal selfish annoyance: we have to pay for parking (£16.40 a day) and tv while we are there).

Everyone is giving us different information so I hope to God we are not on this ward for the next few weeks. I honestly don't know what I will do.

Joe is the only person on his list for tomorrow: in around 9am. Won't be done before 2-3pm at the absolute earliest. No updates = a good thing.

Better get to bed and try to sleep.

Oh it sounds fairly awful on that ward. 18 kids ?

Very best of luck for tomorrow. Everything crossed for you and Joe.

Wishing you all the strength in the world for tomorrow xxx

Thoughts are with you x

They usually do but not on this ward. I change it at home so it wasn't that big a deal, but he hates it so much that I prefer the nurses to do it. It's hard to be the bad guy.

Happy birthday to your DD too.

It will be ok, I'm just scared and that's affecting everything.

All the very best. Will be thinking of you all & especially Joe - sorry the conditions are so miserable.

Trazzle I think you are dealing with this amazingly well and know that my thoughts and ommy prayer things are with you, your dp, your dd and Joe.
I hope it continues to go well xx

Dear Trazzle

The ward sounds dreadful - poor you. I really hope you don't need to stay there for too long. All the best for the operation. I will be asleep down here but will have you in my prayers and will log on to find out how little Joe is tomorrow.That nurse was useless- you need more help not less!

I'll be hoping for no updates then, Trazzle. Wishing you, your DH and Joe all the very best. I'll be thinking of you all.

Good luck today Joe and all of you. I'll be thinking of you and crossing gingers that all goes smoothly. Such a big hurdle to jump but he can do it. Go team trazzle, I'll be rooting for you.

Thinking of you Trazzle. I hope everything goes smoothly today xxxx

When you can summon the energy I would complain about that Nurse to the senior Nurse on the ward. The nurses are there to care for your children and to give you confidence in their abilities. That Nurse did not show empathy and should be reprimanded.

When my DS came down from ICU after his op and into the general paed post- op ward incompletely freaked out. The noise and numbers of other people there sent me over the edge. I couldn't listen to another parent moan about their child's minor op (I know major to them) and them just turn away when I told them what my son had gone through. I demanded after a week to be moved back to the paed oncology ward for my sanity if nothing else. I wanted to be amongst other families who understood. We were moved back then but we might have just been ready to leave that ward though.

I will be thinking of you all xxxxxxxx

Thinking of all of you