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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 · 02/07/2013 21:12

I'm confused, it must be incredibly confusing for you as you're the one who needs to understand everything. Glad things seem to be going well but sorry that joe is going through some tough treatment. Will be thikng about you as always

PseudoBadger · 02/07/2013 21:15

Still thinking of you all xx

Ragusa · 02/07/2013 21:38

Bah to the temp. Hope it buggers off.

See what you mean about the relapse. I didn't know that was something that could happen - the body attacking the NB. I hope that's the case. Fingers crossed and Flowers. Is there anything practical/ material you need ATM? xx

bobkate · 02/07/2013 21:43

Bless mini Trazzle and her toddling. I love it when they start but it certainly gives you heart in the mouth moments at regular intervals in the day that's for sure. Hope Joe is doing ok, and that the temp doesn't hang about for long. Thinking of you and wishing good things and good news for all of you x

Original poster
Trazzletoes · 02/07/2013 22:58

His temp had gone by this morning. It's now more likely he will get one every time but we can still hope he doesn't!!!

I spoke to his consultant about the vitamin a and apparently there was a study done which showed that this age group of children wasn't getting enough of the medicine so they allow for you not getting everything out of the capsules and some of it sticking to the feeding tube thank God.

Re: the relapse. The 2 Drs disagree. Simple as. Neither can prove themselves right/the other one wrong as quite sensibly they didn't biopsy Joseph's skull. Joe's consultant firmly believes it was neuroblastoma and it went away. As he said - at the time we were told (by everyone) there was nothing else it could be due to how it was presenting.

Ragusa the body attacking it is their best guess at why it went away. They aren't certain by any means. It is definitely a guess. And one we are really hoping for - if his body has recognised it as "foreign matter" and attacked it, it should do so again and that's the key to surviving a cancer with a relapse rate as high as this one.

OP posts:
Original poster
Trazzletoes · 03/07/2013 21:50

Joe has had another good day today. For some reason he didn't get a temperature after his injection last night Si that was a blessing. Fingers crossed for the same tonight...

OP posts:
onedev · 03/07/2013 23:37

Fingers crossed. Thinking & splodging as always.

StealthPolarBear · 03/07/2013 23:38

Fingers are crossed x

TwentyTinyToes · 04/07/2013 06:20

Fingers, toes and everything else crossed. Always lurking on this thread and thinking of Joseph. X

ajandjjmum · 04/07/2013 09:13

I bet this thread is on more 'watch' lists than any other! Hoping for another good day today Trazzles.

Original poster
Trazzletoes · 04/07/2013 09:55

Haha aj actually I think that award goes to sixlostmonkeys' feedback extortion thread in the EBay section. It is absolutely Shock

No temp last night, though it did get up to 37.5 (38 being the magic number here) so a bit tense for a while but he's doing grand. An unexpected ultrasound this morning too - exciting!

OP posts:
ChickenLickenSticken · 04/07/2013 12:06

Glad joe is staying cool, he sounds like a little cool dude Smile. Good luck with the ultrasound today too.

VenetiaLanyon · 04/07/2013 14:00

Glad to hear Joe's doing well, and hope Ultrasound ok.
(I too am Shock at sixlostmonkeys...you couldn't make it up...)

NorksAreMessy · 05/07/2013 22:23

trazzles good evening and apologies. I have been away and neglecting you all. :(

Sending love from Malvern as always, now we are back home

toomuch2young · 08/07/2013 11:07

Hi Trazzles.
Hoping Joe is staying cool, despite the heat!! Gingers crossed the ultrasound went well. Thinking of you all x

MaggieMaggieMaggieMcGill · 08/07/2013 11:19

Fingers crossed it's all going as well as can be expected!

Original poster
Trazzletoes · 08/07/2013 21:13

Last week was ok - 3 temps out of 5. Unfortunately 1 was Friday night just after we were discharged so we had to spend Saturday in as Joe's potassium levels were very low.

Still, he coped well enough in himself that next time he can have that week as an out-patient, just coming in every day for the injection and monitoring. And staying in if he gets a temperature.

Today has been a different story. He has been getting an infusion of antibodies which is painful. He's been on morphine but while they were resulting to find the right level he was screaming in agony for over an hour. He's on oxygen as well as his breathing is a bit erratic. This is all expected and everyone is telling us that the very first day is the worst. His morphine has been turned down a lot already and he's been comfortable despite that.

It's just very similar to the time we were in for high dose and so it's hard to be reminded of that time and hard to see your child in so much pain.

His injection will be done around 1am so it will be a long night. I would go to sleep now but the toddler next door has been watching Peppa pig constantly for the past 6 hours. It's engrained in my mind. And his mum keeps giving him noisy toys to bang against his cot bars. I know he's poorly but why is she not stopping him??!! Argh!

OP posts:
Badvoc · 08/07/2013 21:27

Still thinking of you all xxxx

PoppyWearer · 08/07/2013 21:31

Sounds like a tough day, Trazzles. Hugs to you and Joe xx

Ragusa · 08/07/2013 21:43

Gah. Can see how this is tough. Well done Joe though, for handling it like a pro and being cleared for outpatient treatment . Hurray for that.

Hope your long night not too awful.

Surely the peppa pig addict must conk out for the night soon? There's only so much of Miss Rabbit's diverse career trajectory and daddy pig's general incompetence a person can take....

Original poster
Trazzletoes · 08/07/2013 21:47

You'd think ragusa you'd think...

There's definitely only so much I can take...

OP posts:
Ragusa · 08/07/2013 21:59

Do the hospital supply earplugs or zopiclone?

Ragusa · 08/07/2013 21:59

For you of course, not the child next door Grin

VenetiaLanyon · 08/07/2013 22:08

Eyemask to accompany the ear plugs?

barefootcook · 09/07/2013 03:27

Just wanted to say hi Trazzle. I often think of you all and especially on rotten days like today. Hope Joe's pain continues to settle down and you get a break from Peppa.

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