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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:
Original poster
Trazzletoes · 29/05/2013 11:59

Thanks. Joe is still doing ok - he has been a bit sick but that's to be expected as he is having radiotherapy on his tummy and someone had forgotten to prescribe him some anti-sickness meds

Had a bit of an incident on Monday where his Hickman line ( which goes straight in to a vein in his chest) snapped while we were on a day out... Quick trip to a&e ( we had to hold on to the little bit left poking out of his chest as it would have just pumped blood out otherwise) who clamped it and sent us straight back to the Lgi to get it fixed.

Thankfully they could do that without taking it out and putting a new one in. We now have a 3 day wait to see whether it got infected while it was exposed though < tense>

We now have a little bag that goes round his neck to keep the ends in and hopefully I will have a chance to make some more for him this week although my sewing skills are only legendary in the sense of their awfulness!!! Good practice, I guess!

OP posts:
ToffeeWhirl · 29/05/2013 12:22

Sorry about the incident on Monday, Trazzle. It sounds very stressful, to say the least. Poor boy, feeling so sick because he didn't have his anti-sickness meds. As if he doesn't have enough to cope with.... Angry.

onedev · 29/05/2013 14:26

That does sound stressful! Hope the sickness is getting better.

HavingAnOffDAy · 29/05/2013 14:42

Wow, just caught up with this thread having lurked on some of the others.

What fab news!!!

So pleased for you Trazzle, Jo & family etc

Fingers crossed for a good prognosis

Original poster
Trazzletoes · 29/05/2013 14:48

dev thanks, it was just the once and we now have some anti-sickness meds so shouldn't get too bad! It was all such a rush I guess it just got overlooked. It's fine, if a little frustrating!

OP posts:
onedev · 29/05/2013 17:31

You take it all so well - it's little things like that (& not so little if you're poor Joe being sick!) that could easily tip you over the edge so I honestly think its amazing you keep it all together. Glad the medicine has kicked in & it's stopped. Joe really is a trooper.

ajandjjmum · 29/05/2013 17:52

So is Joe's mum Smile

Ragusa · 29/05/2013 21:29

Ah so glad to read all is going as well as it could do - hickmann line aside Shock.

Hope the sickness passes.

Does he have to have radiotherapy on other areas too or is it stomach only?

MrsFrederickWentworth · 29/05/2013 21:49

Gosh, hickman line must have been scary. Keeping gingers crossed for no infection.

How are you and dd and DH?
Good old Joe, Splodging for you all in the filthy weather down south.

Original poster
Trazzletoes · 29/05/2013 22:42

He only has radiotherapy on the site of the main tumour so that's the right hand side of his abdomen.

Thank goodness though as DMil had radiotherapy on a tumour in her brain and in her case it was, well, I can't really put it in to words but it wasn't a good thing. I think we would both have struggled to give consent to that. We would have done but it would have been difficult.

Neuroblastoma tumours grow round things rather than pushing them out the way like most other tumours and are also quite sticky so they do the radiotherapy to mop up any of the edges that were missed. We knew anyway that they were unable to get all of Joe's tumour out. It went too far down in to his pelvis to be completely removed safely.

Gosh that was 4 months ago now!

The Hickman line was very scary but actually I could cope with focussing on squeezing a bit of plastic. We are very lucky (Joe is at least!) that it didn't come straight out of the vein. I used to be in the St Johns but nevertheless am rubbish with blood and don't think I could have calmly applied pressure to my little boy's chest and kept him calm as well. He went crazy enough with fear when it snapped!

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MrsFrederickWentworth · 29/05/2013 22:49

Trazzle, thanks for explanation, there is a horrible interest, isn't there, in becoming knowledgeable about dcs' rare illnesses.

I can imagine, poor poppet. But it is over now. Would you like the MN community to make you little bags? Or is it a necessary distraction.

CheckpointCharlie · 29/05/2013 22:54

Wow I haven't caught up for a little while and now I feel so so overwhelmed with happiness for you, Joe and your family. How amazing!

Sending you a lot of love. And I can sew stuff so if I can help....!

NorthernLurker · 29/05/2013 22:56

Oh you poor things. Glad all is ok now. HAve they given him antibiotics anyway or they wait and see if there are signs of infection?

Praying4Beatrice · 30/05/2013 00:33

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Withdrawn at the user's request

Badvoc · 30/05/2013 22:15

Blimey...sounds scary!
Hope joe is better now he has his anti sickness meds.
Still thinking of you all xxxx

LatinForTelly · 30/05/2013 23:24

How scary for you and Joe, the Hickman line snapping. I hope very much there is no infection there (although hoping he is in the clear by now, it being 3 days later).

Glad he is coping ok with the radiotherapy (in spite of the sickness earlier Sad)

I think of you all often, and hope Joe continues to get stronger. (DH's blood appointment is looming. I am half expecting to have to manhandle him into the bus-thingy, the big wuss.)

savoirfaire · 31/05/2013 00:02

Just popping in to say well done and thinking of you all. Hope to meet Joe one day.

bobkate · 31/05/2013 21:27

Just checking in too and want to say still thinking of you all and how amazing I think you all are xx

Original poster
Trazzletoes · 01/06/2013 00:08

Hi, not much to report really as Joe is still plodding along in much the same vein. Although the radiotherapy still has its own horrible side effects, these are mostly seen some way in the future ( ie. affecting growth, developing different cancers etc) so although Joe has the potential to get quite poorly in the next couple of weeks, many parents see radiotherapy as being "the easy bit" certainly as far as treatment goes for neuroblastoma anyway.

I have an appointment with Joe's consultant on Monday to find out what part of the clinical trial he has been selected for.

Joe, in himself, is probably about as good as he has been since he was first diagnosed. He is tired and gets grumpy, of course, but you can definitely see Joe again. His hair is also coming back - you can practically watch it growing!

Needless to say, I haven't got round to making bags yet I could do with a couple spare so if anyone has some spare time and scraps of material I would be terribly grateful and can pm dimensions

P4B I've not heard of that stretchy stuff... Does it come already in a tube? If it does I can't imagine it would fit Beatrice AND Joe! He is huge for a 3 year old!!!

Happy weekend everyone x

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Original poster
Trazzletoes · 01/06/2013 00:12

Northern no antibiotics, thank goodness. It would seem that there was no infection as I assume we would have been called in if anything had been grown from his blood. Thank goodness!

With cancer they give antibiotics just in case for everything so I guess they have to draw the line somewhere to preserve their efficacy and if Joe wasn't showing signs of infection, perhaps it would be a waste of the medicine and also of a bed for 5 days as he would have to be admitted to the hospital. That then causes problems for infection control in radiotherapy and is also hugely disruptive for us.

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MrsFrederickWentworth · 01/06/2013 10:02

Good news about infection. Splodging for you.

Am not good at sewing so will see if others offer but v happy to be the sewer of last resort iyswim. Let me know, say tonight ish. ( there doesn't seem to be a noun for a sewer, I sound like a drain.)

Hope your weekend goes well.

Badvoc · 01/06/2013 14:51

I have a sewing machine.
What is it you need trazzles?
(Am a beginner though!)

TeaMakesItAllPossible · 01/06/2013 16:23

Thank goodness for no infection Trazzles and lovely to hear Joe has the energy to be himself.

And you have my sympathy dealing with a grumpy 3YO.

Praying4Beatrice · 01/06/2013 21:14

This reply has been deleted

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NorksAreMessy · 01/06/2013 23:09

Have a sewing machine and I know how to use it. You will be inundated trazzles

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