Joseph's last thread? Here's hoping...

[Trazzletoes]

My now 4 year old DS, Joseph, was diagnosed with stage 4 high risk neuroblastoma last October. It's a particularly aggressive cancer with an 80% relapse rate. Long-term survival statistics are not great.

Joe has had 8 cycles of chemotherapy, an operation to remove the main tumour, stem cell harvest, high dose chemotherapy and stem cell transplant as his bone marrow was destroyed, 3 weeks of radiotherapy and now 5 1/2 months of differentiation therapy and imunotherapy.

In April we learned he had relapsed and so had a 5% chance of ultimately surviving. Then, the relapse spontaneously un-relapsed but we don't know for certain what this means for his future. Whether its good or bad news.

He remains bright and cheery and gorgeous throughout.

Trazzles - as I've said recently on another thread, if 5% is what we get then it will have to be enough. It iis enough for hope and a future for your amazing son. Praying everyday for him

Just caught up with your last update on the old thread. I know line infections move fast and are very dangerous but yes you should have been listened to and the chest infection thing is quite scary really - because if they were worried about anything it should have been the line rather the chest - iyswim. So doubly wrong.
Is there a specific protocol for temp after the injection? If not could you talk to the consultant about writing one. It might err on the side of caution more than you'd want, and I expect you're worried about abs upsetting his gut when he doesn't need them, but it would at least give you a document to insist they work to or seek consultant advice before a variance.

I'm still with you! Sorry to hear the trauma through the night but glad that the consultants today are listening to you.

We're always here for you to vent & scream & shout - so go for it whenever you need to.

Gingers still crossed very firmly for Joe. Over and out

Thinking of Joe and the Trazzle family x

Ah mate, crap when people say thing and do another :( Baaaaaah to the ones who do not listen to Trazzle.

Hope wee Joe is doing ok with all the horrible blood tests etc. Stay gorgeous, little chap.

There's no firm protocol after the injection. It is up to the Doctor who is on. Last time they were going to keep him in and treat him for a line infection until someone called the Consultant (who is running the trial) who told them straightaway to send us home.

They have put him on ABs to err on the side of caution. I get that, but it was IMO completely unnecessary to treat a potential chest infection. The consultants have agreed with me on that today. They have said its the potential line infection (which they also don't think he has but he did have the potential for one on his sats) that is being treated. But no one last night mentioned line infections. Plus they should not have given him medication that I expressly asked them not to.

Unfortunately the night drs are generally massively cautious and simply do not listen. The best we can hope for if we get discharged is to get the drs to confirm we can stay home with a temp for that night. And even then we still phone up and they can still demand us in. I don't know what happens if we flatly refuse to come in but I imagine it would involve social services?

The difficulty is that even though they can be 99.9% certain that the temp has come from the injection, if there are other signs of infection then there's always a risk, alvbeit 0.1% that its something serious and its not a risk they can take.

And today's nurse has been so lovely to me. I like to think that DH and I are generally quite reasonable and don't cause a fuss unless necessary and I would hope that the staff here who know us appreciate that. She brought me a cup of tea this morning, as if she didn't have enough to do already. Lovely lady.

god Trazzles, when you write it all out like that . Sorry to read your latest update. No wonder you are so frustrated at times.
Keep going, you should be so, so proud of yourself for being such a fab mum to Joe xx

northern the 5% applied when he relapsed. Now he's un-relapsed, no one quite knows but we're potentially back in the ballpark of 30-40%. Could be 5%, could be much more like 100%. No one knows. I've stopped worrying about the numbers. I can't count anyway.

Trazzle, my thoughts are with you and Joe. I admire you greatly.

Should you get home soon if Joe's temperature stays down Trazzles?

What a year you've all had. Your amazing boy has an amazing mum.

Still hoping and praying in your corner Trazzles.

almost we're in til Thursday morning regardless.

His temp won't stay down - he gets one every night with these injections. However by the time we are discharged with luck they'll have ruled out illness as a cause and should hopefully rely on injections as the cause and allow us to stay at home. We'll see. I'm not holding out any hope right now

Still with you and the gorgeous sounding Joe. Gingers crossed and splodging as always.

Good luck and God bless

I often think of you all, feckin cancer sucks

X

Still with you, Trazzle. Sorry you had such a shit time last night, but it sounds as if the day team really tried to make it up to you (lovely nurse to bring you tea ).

I hope you have a better night tonight.

Thinking of you, Joe and all the Trazzle family x

Oh Trazzle, the daily battles you have to fight for Joseph. Sorry I barely posted on the last thread. I'm always with you.

Yep- still here. Hope today is better. Love the title!

Thinking of you and your little boy.

Always thinking of you Trazzles. Up right now feeding my 3 day old. He sends you a kiss.

Hope you both got a better night last night.

Have name changed but still with you

It's having to remain constantly alert with the medics on top of everything.else that is do exhausting, isn't it. And exposing everything again from new each time.

Hope today gues better.

Thanks for explaining about the numbers Trazzles. It's all background noise anyway isn't it? Numbers say what happened not what's going to happen now. Very sensible not to worry about them