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

(807 Posts)
Trazzletoes Tue 17-Sep-13 20:47:13

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.

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 smile

ancientbuchanan Wed 18-Sep-13 08:36:32

Explaining, not exposing. Darn phone.

Still with you, Joe, your DH and DD Trazzles

I'm sorry that you're not being listened to. I do understand how frustrating it is not to be listened to by medics. I've in the past had to sign a form saying that I'm taking one of my children out of hospital at my own risk, and against medical advice, it painted the potential consequences of my decision in very stark terms and outlined that the consequences were mine to take. It was a one off decision after following all the instructions and protocols to the letter. I wasn't reported to social services. The nurses completely understood the decision we were taking but the consultant had to, I think, follow the protocols outlined by the NHS due to the risk of litigation. I spent the next 7 days having nightmares and waking every hour to check on the bairn. With reflection I decided being a medic must be the hardest job to do because intuition must often have to be suppressed by the nature of the way healthcare works.

May today be full of tea. Splodging away that you'll be able to get out on Thursday.

LazyMonkeyButler Wed 18-Sep-13 12:23:43

I've read your previous threads about Joe but rarely comment as I am not very good at finding something to say that could possible help you.

I am still here though, sending much love & positive thoughts to the whole Trazzle family smile.

NomDeClavier Wed 18-Sep-13 12:30:39

I also read and rarely comment because I just don't know what to say. You're on such an emotional roller coaster and you're right when you say the numbers don't matter any more. They're just averages and probabilities and statistics and Joe is a unique little boy who is fighting his own battle.

Trazzletoes Wed 18-Sep-13 17:30:26

Buffy I know you are, you lovely lady, you. You don't have to say it.

ninja Wed 18-Sep-13 23:37:11

Still with you and the amazing Joe - I think of you often and all that you've been through in the last year x

BIWI Wed 18-Sep-13 23:40:36

Oh Trazzles. I am sending you and Joe huge hugs. So fucking frustrating not to be able to do anything else sad

MrsShrek3 Thu 19-Sep-13 00:10:41

Also still here with Team Trazzles. Delurking to bookmark :-)

LuisSuarezTeeth Thu 19-Sep-13 01:22:10

Thinking of you all, sorry if that sounds trite, not meant to be, just am.

ChippingInNeedsSleepAndCoffee Thu 19-Sep-13 01:46:48

Hi lovely, I lost the last thread and I can't do any searches, so couldn't 'find you' (tech says he can't fix it, but frankly I think they disabled it - I must have been misbehaving shock. It's bloody annoying though).

It sounds like you'd had a rough time (again) sad

Always thinking of you all & keeping my gingers crossed
xxx

Chipping I can search, message me on fb anytime you want a link to anything.

Thinking of you and J xx

How utterly frustrating. Hang tough.

ChickenLickenSticken Thu 19-Sep-13 19:38:15

Still splodging from Essex having sadly followed from the start.

Trazzletoes Thu 19-Sep-13 20:17:16

Chippingin here is the last thread.

Chicken big up the Essex massive x

Well, I think I've now complained to every single member of medical staff I have come in to contact with. It appears to have been well-documented grin. Without exception they have agreed that I wasn't being daft, generally that they would have started antibiotics but for different reasons than the Dr on Monday night, and that the Dr and both nurses were bonkers for making us wait for Joe's blood count to be repeated when it had been done 8 hours before.

All his blood cultures and, erm, other things have come back clear (ahem, as I expected) so the antibiotics have been stopped which I hope means his tummy upsets will also start to settle.

He has just been awake for an hour with a poorly tummy and being sick. Thankfully that now seems settled and he's fast asleep again. Despite being cross with me for watching TV grin how dare I when I've been forced to watch cbeebies non-stop for the last 3 days...

He's been on Iv fluid since admission too as he was dehydrated, but that's also stopped now. He's being monitored overnight and if he stays ok we can go home tomorrow. It's been a very long week because DH has been away all week on a conference - back tomorrow. I've not seen DD since Monday evening - the longest we have ever been apart. My heart aches to see her. Plus I'm going stir crazy being stuck in with Joe. I've got backache from the camp beds and I need fresh air. I was out for an hour earlier but its very intense in here.

I'm ashamed to say I've lost my rag at him several times to the point of healthcare workers suggesting I leave. It's difficult though when his clothes are dangerously dirty and he is going mad and screaming and refusing to allow anyone to take them off and clean him up.

Very much hoping we can get out tomorrow and will get a pass to not have to return if he gets a temp.

bobkate Thu 19-Sep-13 20:28:09

A tough week for you Trazzles sad - really, really hope you get to go home tomorrow for a little bit of home time. Big hugs xx

ClockWatchingLady Thu 19-Sep-13 20:47:11

Well done asserting yourself with medics, etc. - your instincts are clearly great, and serve Joe excellently. As ever, Trazzles, you remain awesome (and human, in direct proportion to your awesomeness... losing your rag sometimes has got to be par for the course in these circumstances when you love someone like you love Joseph).

Thinking of you all and hoping hoping hoping that you get home tomorrow, and get a long cuddle with DD too.

Trazzletoes Thu 19-Sep-13 21:07:12

I was bored last night and re-read my first thread - v odd as I can remember perfectly exactly what happened but had forgotten a lot of the emotion, except that the couple of nurses who were on the day we were admitted frequently refer to the fact that I was extremely upset. Unsurprisingly really, but I think often people suspect there's something seriously wrong with their child and have been trying to get help for months. For us it was a sledgehammer out of the blue. We had no idea. No idea at all.

I'm still massively over-whelmed by the support we have had on here though. It's been incredible.

Trazzletoes Thu 19-Sep-13 21:07:54

I was bored last night and re-read my first thread - v odd as I can remember perfectly exactly what happened but had forgotten a lot of the emotion, except that the couple of nurses who were on the day we were admitted frequently refer to the fact that I was extremely upset. Unsurprisingly really, but I think often people suspect there's something seriously wrong with their child and have been trying to get help for months. For us it was a sledgehammer out of the blue. We had no idea. No idea at all.

I'm still massively over-whelmed by the support we have had on here though. It's been incredible.

Trazzletoes Thu 19-Sep-13 21:57:04

Can I also please ask you to pray ( or whatever else you feel appropriate) for a little girl with the same diagnosis as Joe that's being treated here. She's been going through the high dose chemo and is in a bad way. She's very poorly.

ancientbuchanan Thu 19-Sep-13 22:00:36

Of course. On my list and candles in my mind. Splodging from a train heading south for both of them.

Ragusa Thu 19-Sep-13 22:03:18

Willing the little girl to get better sad

Sorry you have had a s**t week. Hope it improves....

barefootcook Fri 20-Sep-13 02:00:18

Sure. Can you say her name or is it inappropriate?

RatherBeOnThePiste Fri 20-Sep-13 02:14:59

Big hugs lovely, will be thinking of this little girl too Xx

Trazzletoes Fri 20-Sep-13 02:33:04

barefoot I've not seen her parents to ask so don't want to put her name on the Internet but the nurses have said she is very unwell and has been in Intensive Care for a long time.

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