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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 · 16/06/2013 21:35

Thanks QOD

Sorry I've not been on here much. There's nothing much to say! Joe is doing fine and started the retinoic acid last Thursday. He has that at home and is feeling fine so far. It will have side effects but he's ok at the moment and the side effects aren't too bad in the grand scheme of things.

It is the faffiest medicine ever though. It's in capsules which of course he can't swallow, so we have to soften and then cut the capsules. But you have to wear gloves because its basically vitamin a and so dangerous for pregnant women so you can't touch it or let it get in to the water or anything. It's really oily and just sticks to the gloves. It's impossible to do! Takes me about 15 minutes twice a day and even then I can't get it all in, it gets all over the gloves Sad

OP posts:
hellohellohihi · 17/06/2013 06:05

Hi trazzle, glad to hear that no news is relatively good news. I think of you all often still....

That does sound like a complete faff with this new medicine, is there no other way they can give it?? Oh, and did I miss that you are pregnant?? Congrats if so!

Original poster
Trazzletoes · 17/06/2013 06:58

No, there's no other way to give it !!!!

Just to clarify, I am absolutely NOT pregnant!!! If I was, I wouldn't be allowed to administer these meds at all due to the risk. Even the men have to wear gloves etc. it's just to make sure really. There is no way I could handle being pregnant and going through this! We get enough disturbed sleep already, plus we have no idea what will be happening in 9 months time - although we very much hope that Joe has now got the ability to survive, we don't know that for certain. And if he doesn't, he could be seriously ill when the baby would be due! Some choice for DH then at that moment...

Plus (thankfully and most importantly!) 2 is enough for me! I have no idea how people cope with more! But cancer really does mess up every aspect of your lives. It would be very difficult if we knew we wanted another one. Of course all this could change but for now? No thanks!

OP posts:
GlaikitFizzog · 17/06/2013 07:15

I did wonder trazzles! But I totally get what you are saying, and I only have one! Wink

I hope an easier way comes up though, sounds like its just additional stress for you.

hellohellohihi · 17/06/2013 08:02

Sorry for jumping to that conclusion, I have to admit I thought you would be barking mad to be considering DC3! I only have one DD and would like another but think we'll stop there! I already feel pulled and stretched emotionally and logistically and we haven't got that bastard cancer in the mix, so totally understand where you're coming from!

How long will joe be having the fiddly stuff for?

saffronwblue · 17/06/2013 08:07

I have been away and just wanted to check in and see how Joe is going. Hope all the Trazzles have had some calmer days.

VenetiaLanyon · 18/06/2013 09:25

Blimey, must be strong stuff; how's Joe doing on the side effects so far?

barefootcook · 19/06/2013 06:16

Sounds like you are making good progress Trazzle. Keep posting- it great to hear how you are all doing.

Original poster
Trazzletoes · 19/06/2013 06:18

He hasn't had any side effects yet but that's not a huge surprise. He could get a sore mouth ( and he may have as he isn't eating still) but the side effects of this bit shouldn't be toooooooo bad.

Make a wish called yesterday to say they are putting how's wish on hold for 6 months while he gets through his treatment so Disney is still a potential which is good to know. I'd better get up anyway - I've got work today and for some reason joe's feed pump keeps beeping at 5.55 and today has woken up both children. Hooray.

OP posts:
ToffeeWhirl · 19/06/2013 07:26

Damn that noisy feed pump, Trazzles. Good to hear that Joe isn't suffering any side effects so far. And great that Disney is still a potential, even if it is on hold at present.

onedev · 19/06/2013 12:09

Hope you've managed to stay awake in work! It's crap when you get woken earlier than necessary!

Joe really is a trooper with all of this going on - you must be so proud of him (& yourselves - you're all doing so well getting through this). Thanks

tholeon · 19/06/2013 12:45

What an inspirational lot you are. Sorry about the beeper though! We have a noisy crow here who likes to wake my lot up at 5.30 ish.. X

TeaMakesItAllPossible · 19/06/2013 13:01

Afternoon Trazzle - hope you had a good day at work.

Still splodging for you all.

Delighted to hear that the side effects are fine at the moment for Mr Joe. Brilliant that Make a Wish are helping manage around Joe's treatment. Gingers crossed for quiet alarms, no sore mouth and a dose of mickey in the future.

Xenia · 19/06/2013 13:44

I wonder if there Vit A in a bottle you could feed with a pipette which might be easier than 30 mins a day cutting open capsules.

Hmmkay · 22/06/2013 11:06

Morning Trazzle. Hope you're all okay and Joe still isn't having many side effects?

I hope Make a Wish do get Disney to happen - he really does deserve it (you all do!).

eightytwenty · 22/06/2013 22:31

This reply has been deleted

Message withdrawn at poster's request.

ChickenLickenSticken · 25/06/2013 19:14

Delurking to say that you Trazzles are still in my thoughts daily and hoping no news is good news :)

savoirfaire · 25/06/2013 23:05

Just a quick delurk to say hello and I'm glad things seem to be going ok. DH donated blood a couple of weeks ago - for about the third time ever and despite being incredibly worried about doing so he managed it inspired by Joe and by you. It really pisses me right off that I can't donate because I have previously received a transfusion and due to concerns about mad cow disease they won't let me. Which seems annoying - when did anyone last year about mad cow disease, surely it's not as big an issue as getting people blood? Hey ho I mustn't rant! Best wishes, splodges and all that to you.

onedev · 26/06/2013 00:05

Still splodging here too Smile

toomuch2young · 26/06/2013 00:19

Popping by with splodges from the north as always.
Your family are often in my thoughts hope Joe is continuing to get stronger and his days are penguin filled xx

Original poster
Trazzletoes · 26/06/2013 08:19

eighty no, I didn't see it - what was it about?

Thank you for the blood donation!

No news is indeed good news - nothing to report really! He is in tomorrow for an ultrasound of his heart as this could be affected by the immunotherapy so they keep a close eye on it for any changes. Then in on Monday for the immunotherapy to start .

OP posts:
Millie2013 · 26/06/2013 09:25

Still thinking of you all and keeping everything crossed :)

Ragusa · 26/06/2013 13:44

Fingers crossed here too.

Badvoc · 26/06/2013 13:48

Still thinking of you all xxxxx

ChippingInWiredOnCoffee · 26/06/2013 14:59

Just popping in to see how you are all doing :)

Those Vit A things sounds like a royal pain in the arse - how long will you have to do that for? You would think they could give him a shot like you can for Vit B.

How's DD doing and how is your Mum keeping now?

Much love as always
x