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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:
StealthPolarBear · 26/07/2013 13:18

Oh no. Whatever that is sounds awful.

Re the coke, could you move on to coffee instead? Or is that a stupid idea?

StealthPolarBear · 26/07/2013 13:22

is it the caffeine that causes the flare up or something else, I mean

Original poster
Trazzletoes · 26/07/2013 13:35

It's something else SPB in that I can drink tea til the cows come home.

It is so immensely frustrating being stuck here. The Doctors keep coming in, pointing out there's nothing they can do and telling me they understand how crappy this is.

I really don't think they do understand and it just gives me the rage.

I am terrified that these delays will cause problems. No one can reassure me they won't. It's just so bloody frustrating I just want to scream and cry and have a full-on tantrum.

OP posts:
minmooch · 26/07/2013 14:45

Scream, cry and have a full on tantrum - you may feel better for it. There were so many times when I was in with DS that I felt just the same, when you see your child so ill and yet it's just a waiting game until they ride it out. It is so totally unfair when our children have to go through so much and then a side effect of treatment, or infection picked up along the way delays things.

DS was in solidly for 5 and a half months by which time hospital felt more of a home than home did.

Sending you as always much love and strength to get through each day. Xxxx

Almostfifty · 26/07/2013 16:56

Oh Trazzles. You poor things. Go and scream into a pillow. xx

ToffeeWhirl · 26/07/2013 19:05

Sorry, Trazzles. It must be so frightening and frustrating.

Hassled · 26/07/2013 19:13

I'm so sorry things are so shit for you and Joe - I can't begin to imagine how you not only cope, but how you cope with humour and patience. And you have expressed how great Joe is - thinking back to when my boys were his age, I can't imagine them being able to cope with the stuff he's managed. He sounds absolutely wonderful.

Original poster
Trazzletoes · 26/07/2013 22:28

They cope because they have to.

They've changed Joe's feed to the most easily digestible one they have. It's basically amino acids in water. If his body can't cope with this then we are stuck here, unable to leave because his body can't survive off the I/v feeds, unable to continue with treatment because his body can't digest the drugs.

It's just horrible.

OP posts:
barefootcook · 26/07/2013 22:46

Trazzle- just thinking of you and hope Joe tolerates the feed and you can get going with the treatment again.

Praying4Beatrice · 26/07/2013 23:02

This reply has been deleted

Withdrawn at the user's request

ToffeeWhirl · 26/07/2013 23:40

So sorry, Trazzle. Fingers crossed that this new feed works.

kreecherlivesupstairs · 27/07/2013 00:10

FX for the newest feed.

NatashaBee · 27/07/2013 00:20

This reply has been deleted

Message withdrawn at poster's request.

MrsFrederickWentworth · 27/07/2013 00:52

Haven't posted for ages but still Splodging and sorry to see how difficult things are. Cherish yourself if you can.

All Trazzles Are Awesome.

It's the family motto

MaggieMaggieMaggieMcGill · 27/07/2013 01:03

Oh Trazzles, your poor little boy. I hope it stops soon.

greenhill · 27/07/2013 07:54

Fingers and toes crossed for you and Joe.

Original poster
Trazzletoes · 27/07/2013 16:32

Well, there's been no change for Joe but his test results have come back all negative for viruses and infections so he's been started on Imodium - 2 days earlier than was originally estimated. Fingers very tightly crossed!!!!!

I've had some discussions with various members of staff too - they keep increasing Joe's feed because he's not being sick but utterly fail to take in to account that its falling straight out the other end and doing him no good at all. The charge nurse has confirmed that I'm not crazy which is nice.

Also Joe no longer needs to stay in isolation - HURRAH! They have a new outside play area here so hopefully I can convince him to get up and get out. He's been in bed far too long.

Fingers crossed something starts working soon!

OP posts:
Nocakeformeplease · 27/07/2013 19:07

Oh Trazzles - good news about Joe's test results (and great news for both of you that he is out of isolation). I will be keeping everything crossed that the Imodium does the trick and that you are soon home with the other Trazzles where you belong - and more importantly that you are able to continue with treatment ASAP. Thinking of you x

MrsFrederickWentworth · 27/07/2013 22:50

Good news and I hope you can get him out into the fresh air.

Splodging like anything.

girlsyearapart · 27/07/2013 22:58

Haven't posted for a while now but have been splodging and keeping gingers crossed :-)
Hope you can get joe into the outside play area soon

ajandjjmum · 28/07/2013 09:07

Think of you and Joe so often - hope you can get him out into that play area!

Original poster
Trazzletoes · 28/07/2013 15:55

We did get outside for a little bit yesterday, though in manhandling him out of his room I ripped the tube out of his nose. I was not a popular mummy. At least it needed changing anyway... Blush

He's had a platelet transfusion and a blood transfusion since then so once more thanks and Thanks to blood donators and blood botherers.

Joe's expelling less fluid than he's taking in now so he's off his extra fluid for the moment. Still to early to confirm whether things are starting to slow down but keep those fingers tightly crossed...!

OP posts:
StealthPolarBear · 28/07/2013 16:01

Yes I am. I don't post much as I'm usually on my phone and can't do long threads but I think about you and Joe often. It's so good that everything seems positive for Joe but you are still going through more than any 3yo or his mother should have to and you're doing brilliantly. And I say this as the mother who freaks when I have to deal with a run of the mill tummy bug or nose bleed.

Almostfifty · 28/07/2013 16:22

Fingers tightly crossed Trazzles.

tholeon · 28/07/2013 17:07

Glad you got him out, hope te Imodium helps a bit xx

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