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Original poster

Joseph's ongoing journey with Neuroblastoma

997 replies

Trazzletoes · 13/05/2013 22:24

I've lost count of the thread number now, but my 3 year old DS, Joseph, was diagnosed with an aggressive cancer called neuroblastoma last year.

Part-way through treatment he has relapsed (currently still clarifying that, but it's almost guaranteed) and at that point long-term survival is less than 5%.

He is beautiful and wonderful.

OP posts:
onedev · 28/07/2013 18:48

Gingers couldn't be more tightly crossed. Splodging as always. Thanks

QOD · 28/07/2013 20:42

Onedev, I am intrigued by your ginger crossing. Is that luckier than fingers?

;)

I often think of Joseph, my photo on here has his name on it and he was on the race for life wall too x

Original poster
Trazzletoes · 28/07/2013 21:07

Thanks QOD I did see your photo. It's appreciated.

Gingers crossed came about after a daft typo by me Blush

J has had an ok day today. I'm hesitant to say there's an improvement until its clearly been sustained over a reasonable period but today seems to have been a little better for him. We'll see.

OP posts:
saffronwblue · 29/07/2013 01:32

Everything crossed and light splodging here. xx

Original poster
Trazzletoes · 29/07/2013 04:46

It may be that it's the 4.30am talking, or it could be that I've just changed my 7th nappy since 7pm but I am absolutely blinking raging.

In general, the staff here are incredible but this admission we have been completely pushed to one side and generally ignored. Not one single person seems to be in any way invested in getting Joe better.

I've just had his feed machine beeping... It's empty. It was due to finish at 5.30am but not enough feed was put in it. I've been to tell the nurse that its finished an hour early due to insufficient feed being prepared and I got a little nod and a gentle "OK..."

Well, you know what? No, it's not ok... You aren't paying attention. Because you don't care.

And you know what else is not OK? We won't be starting the Retinoic Acid tomorrow AGAIN. Another week's delay. Another week where he could be relapsing because no one will take any responsibility for getting him better. My baby could be starting to die right now while everyone tilts their head at me and tells me how they understand how frustrating it is for me and points out how well he is in himself. Well that's great but its not getting him anywhere, hey?

I am so flipping mad that my child's life means NOTHING to these people.

A week on from starting his feeds. His stomach is still full of bile. I mention this, I get a head-tilt and an "mmm..." And then it's never mentioned again.

Joe can, and has, gone for a whole day without seeing a qualified nurse. Everyone is going through the motions but not one person seems to care about his well-being, about whether he lives or dies. Every second is precious to us, every second without treatment is important. He's my little baby.

OP posts:
PseudoBadger · 29/07/2013 06:31

Oh Trazzles that's terrible, it really is :( Would PALS or a similar thing in the hospital be able to kick some arse for you? Or is there a superior on the ward you can speak to? It's absolutely not good enough xx

ChickenLickenSticken · 29/07/2013 06:58

That must be excruciating. Can you say all this to them? I don't know how this kind of thing works in hospitals, but I hope there is someone you can complain to - and - who will do something ASAP. It's deffo not good enough. Fingers crossed for some speedy positive action soon xx

girlsyearapart · 29/07/2013 07:37

Poor you trazzles.

Time to start complaining no more mrs nice guy

ToffeeWhirl · 29/07/2013 08:26

Yes, I agree with the others. You need to complain. Unfortunately, I have seen first-hand how neglectful the NHS can be.

So sorry you are dealing with this on top of everything else.

minmooch · 29/07/2013 08:27

Oh Trazzles I understand your anger, fear and frustration. Perhaps you can call a meeting with your consultant, ask him/her why his stomach is still full of bike, what is the plan to get rid of it, ask him why a day goes by without Joe behind seen by a qualified nurse. Ask for the ward top nurse to be there at the same time.

When I was in with DS for so long nurses get used to you, you become a piece of furniture. I very rarely made a fuss or complained, until I felt that my DS wasn't being taken seriously (he was going into renal failure and no one seemed to be doing anything and he was losing so much weight). I finally blew, cried and screamed in the corridor and got noticed again. Consultant was called to go through a plan of action.

As an aside when my DS was in and on normal feeds (ir not the IV parenatal one) I asked to be taught how to use the hospital pump. Feed amounts and flow speed were agreed and I took over doing all feeds. I felt that I had the responsibility and no longer did I have those times when the feed was out, the machine was bleeping and nobody pays any attention. Any chance you could do this?

Love and strength to you as always xxxx

frostyfingers · 29/07/2013 08:35

That's truly appalling - can you contact his lead consultant's PA/Secretary and raise merry hell via his office? Read/write out what you've written hear to a senior member of staff, it's very eloquent and should move the hardest of hearts.

You shouldn't have to be doing this, it's crap. Fingers (indeed gingers) crossed that you make some progress. I agree too with being no more Mrs Nice Guy, you are perfectly entitled to lose your cool with this lack of treatment and care.

Original poster
Trazzletoes · 29/07/2013 09:26

min usually I do do the feeds but he's on medicate which is made up daily somewhere else in the hospital, stored in the drugs fridge and is brought in every 6 hours in the "correct" amounts. If they don't put the right amount in when I'm asleep I can't do anything about it.

We should hopefully be seeing his consultant this afternoon. I was told last week that he would be in today and they usually all come round on a Monday. He works part-time so haven't seen him for a week and a half.

It will be good to talk to him as I trust him and he is very reassuring.

OP posts:
girlsyearapart · 29/07/2013 10:00

Is he the nice one who went out of his way to let you know the test results?

VenetiaLanyon · 29/07/2013 10:53

Sorry to hear this, Trazzletoes. I'm assuming that yuo'll shre your concerns about the nursing staff with him. If you don't get any joy with the consultant, I'd definitely try PALS; they acted swiftly and effectively when I had a similar situation to deal with. Best of luck for this afternoon.

StealthPolarBear · 29/07/2013 10:58

Tell him what you've written here, that every week's delay affects his chances of recovery and that you are really worried that nothing seems to be happening. I really hope things start to happen.
As a side note it seems stupid that things have to start on a Monday!

Steamedcabbage · 29/07/2013 11:38

Bloody hell Trazzles you and Joe have enough battling going on without having to battle to get the help you deserve. It's simply not acceptable. I hope you get to see the consultant this afternoon (can you demand to see him if they try and fob you off?) Don't know how you are expected to summon the strength to deal with all of this - you are doing brilliantly though - quote from your earlier post - it says it all. Thinking of you and wishing you strength xxxxx

LatinForTelly · 29/07/2013 15:50

Your anger is perfectly justified, Trazzle. The NHS care can be fantastic, but not all the time. I have been raging at careless mistakes made by staff with my boy, and with far less riding on the outcome.

I hope by now you've seen Joe's consultant, and that he understands how serious the situation is, and that the staff caring for Joe need to step up.

Thinking of you both xx

onedev · 29/07/2013 18:16

That's shocking Trazzles - hope you got somewhere today with the consultant.

Praying4Beatrice · 29/07/2013 20:29

This reply has been deleted

Withdrawn at the user's request

ChippingInHopHopHop · 29/07/2013 20:35

Oh love - I'm not surprised you are raging! You have more than enough reason.

Did you see Mr Nice Consultant today?

If you didn't talk to him about it, then I suggest you let your Inner Roar out and make sure someone is listening to how you are feeling
x

TiredFeet · 29/07/2013 20:40

no advice, but I am not surprised you are feeling angry. I hope you were able to see the consultant today and get some answers. x

BuffyFairy · 29/07/2013 20:46

Oh Trazzle, how awful. No way should Joseph be getting such a sub standard level of care. Shout, scream and stamp your feet until they take you seriously. I wish it didn't have to be like that.

What did the consultant have to say? I hope you got to see him.

Hand holding very tightly x

Original poster
Trazzletoes · 29/07/2013 21:49

Yes we saw Joe's consultant this afternoon which was great. We had a long chat about everything. I feel much more reassured about everything.

Joe is now confirmed negative for a c diff infection so they are upping his dose of Imodium. I didn't know he was on a basic dose - just one thing...

He's coming off his I/v feed tomorrow night so hopefully his liver will stabilise and double hopefully his body will absorb enough of the liquid feed he's getting.

At least it feels like Joe is being managed now.

Thanks for your support today, as always.

OP posts:
MrsFrederickWentworth · 29/07/2013 22:20

Trazzle, I'm.glad to hear it.

Completely agree with all the others.

Hope tomorrow goes well and splodging away.

Steamedcabbage · 29/07/2013 22:24

Trazzles so glad you got to see the consultant and that he was able to reassure you a bit. Sorry to hear about the c. diff though - hope the increased dose of Immodium does the business! Gingers crossed x