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Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Children's health

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

847 replies

Trazzletoes · 17/09/2013 20:47

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.

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Report

ajandjjmum · 05/10/2013 20:32

Hope you Trazzles are all having a great weekend!

bobkate · 05/10/2013 22:37

Hope Joe is continuing to progress well and enjoy himself at home - still splodging away xx

tholeon · 07/10/2013 06:51

Lovely to see that there has been a little bit of normality for you guys xx

TeaMakesItAllPossible · 11/10/2013 21:40

Hope you and the Joe-ster have had another week of normal.

Still thinking of you

SlightlyJaded · 11/10/2013 21:45

Haven't posted for a while but never stopped lurking.

I am ridiculously happy that you are managing to enjoy some 'normal days'.

You, Joe and all of Chez Trazzle are remarkable and so often in my thoughts.

Always splodging x

Trazzletoes · 14/10/2013 12:44

Hi there, apologies, I fell off my own thread!

We have had a lovely fortnight at home. On Saturday we took the DCs to Thomasland - it was a day out we had arranged when he relapsed (but had to postpone due to bad weather) - going to see Thomas was on his list of things to do when he was in high dose and so poorly. He had a fab time - it was so nice and we really appreciate having it as a positive memory. It could still go horribly wrong but the day itself could have been so very different.

Joseph himself is doing well at the moment. He still doesn't eat consistently or very often. He is enjoying popping in to nursery and making friends. I'm off to start looking at schools for him for next year as well - another thing which could otherwise have been very painful knowing there was a reasonable chance he may not live that long.

Obviously we don't know what the future holds, but I am so grateful that he is ok at the moment.

We're in hospital at the moment for Joe to have the first day of injections today. Currently waiting for a platelet transfusion (thanks) and then hopefully injection and then home after an hour.

And then begins the wait for the fever and back in to the ward.

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Slimchance · 14/10/2013 13:55

I fell off your thread too Trazzles! [SC here]

Just wanted to say "yay to normal childhood injuries!!"

So great to hear that Joe is able to go to nursery now and make friends as well.

Hope injections go OK today x

onedevil · 14/10/2013 18:48

Thomasland is fab - glad you all had fun! So pleased things are progressing well. Thinking of you & sending you my very best wishes as always!

Trazzletoes · 14/10/2013 20:36

His temperature is 37.6. I'm not hopeful.

Am so tired, I could really do with a full night in my own bed.

Do appreciate how fortunate we are, though , that he is getting this set of injections.

Torn in two !

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ancientbuchanan · 14/10/2013 21:06

Oh Trazzle, sorry to hear about temp, but glad to hear about Thomas and nursery. You've done so well keeping him a normal little boy in awful and abnormal circs.

Splodging on the train for you, for his temp to come down and sleep to arrive for you.

ancientbuchanan · 14/10/2013 21:06

Oh Trazzle, sorry to hear about temp, but glad to hear about Thomas and nursery. You've done so well keeping him a normal little boy in awful and abnormal circs.

Splodging on the train for you, for his temp to come down and sleep to arrive for you.

ancientbuchanan · 14/10/2013 21:07

Obv double Splodge! Sorry.

TeaMakesItAllPossible · 14/10/2013 21:15

Well I'll be crossing my gingers for a lower temperature and some sleep dust for you.

My heart feels all warm and mushy that you're able to enjoy some normal things after all you've been through and positively melts that milestones like applying for school can be done with hope in your heart.

Trazzletoes · 14/10/2013 23:54

Thanks for the crossed gingers...

Didn't work.

J and I are up at the hospital waiting for the Doctor to come and stick needles in his arm and then find out what the heck is going to happen tonight sigh

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Ragusa · 14/10/2013 23:57

Ah balls. Hope you aren't at the hozzy long.

onedevil · 15/10/2013 00:47

Oh that's shit - hope they can sort things quickly & you're both able to get some rest. Good luck! xx

barefootcook · 15/10/2013 01:52

Lovely to hear about Thomasland- what a great day out- especially as he was well enough to really enjoy it. Hope you got some good photos. Also, hope the school hunting goes well. I am sure everyone will be very kind and you will find the right place for Joe. Hope you get home soon to your own beds.

TeaMakesItAllPossible · 15/10/2013 07:16

Awwwwwwww that isn't fair.

Sorry Trazzles

Slimchance · 15/10/2013 09:07

Hope you got some sleep Trazzles

Northernlurker · 15/10/2013 20:07

Hope you guys are doing ok.

Trazzletoes · 15/10/2013 20:19

Hi yes, thanks, had a sensible Dr on last night who checked with the Consultant and sent us home after taking some blood samples from Joseph to check for infection. In bed by 12.45am.

The upshot of all that is that, although he has had another temperature already tonight, because he is basically well in himself and has already had the blood samples taken, he can stay at home with a dose of paracetamol unless he becomes unwell.

Tomorrow night we will have to go in again though as the blood sam

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Trazzletoes · 15/10/2013 20:20

Gah!

...blood samples are only good for 48 hours.

He's coping ok so far albeit that he's very tired but that's expected.

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ancientbuchanan · 15/10/2013 20:52

Well done him and you.

Splodging on a train again.

Northernlurker · 15/10/2013 21:45

Well that sounds better than last time. Good to see changes have been made. Bloods and then home is a decent compromise I guess. Why does it always happen late at night though - sods law? Or it it just the time elapsed after the injection? In which case they should shift it to a 7pm slot and you could go home and sleep and then take a feverish child in for bloods in the morning!

God luck looking at schools - how exciting. What's entry like round your way? Are you likely to have a real choice or is it cross your fingers and hope not to get somewhere a bit grim?

bobkate · 20/10/2013 18:29

Just checking in and wondering how the wonder boy is doing? And also how are you doing? You must still be so exhausted by this past year I'd imagine but really hoping you're getting some time for you ( if you're needing/wanting it now! )

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