Active discussions

Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

Talk
Children's health

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

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 · 10/08/2013 14:57

Hi, yes we've had a great week, thanks apart from the idiot woman who decided it would be fun to drive in to the side of our car DH has been on holiday from work so its been relaxation and day trips. We took Joe to the seaside on Tuesday and ticked some things off his list including going on a pirate ship!

Took the DCs to a joust yesterday - Joseph was so wide-eyed it was lovely to see.

Despite the relaxation we're wiped out - Joe is having, like, 6 nappy changes every night. Last night the most consecutive time I got in bed was 2 hours. I'm shattered. We'd been weaning him off the Imodium and made the mistake of dropping his evening dose. We won't make that mistake again.

Another week at home to make the most of though, hopefully!

It's been a tough week really as we saw the parents of one of Joe's friends at the hospital on Monday and they said their DS was going downhill and struggling with pain. The next day they were sent home with less than 2 weeks to live. On Wednesday morning he went with the angels.

He was such a sweet little boy. No family deserves to go through this.

OP posts:
Original poster
Trazzletoes · 10/08/2013 14:58

Sorry, great week personally; tough week emotionally.

OP posts:
TeaMakesItAllPossible · 10/08/2013 17:40

I'm sorry to hear about Joe's wee pal. That is absolutely heartbreaking.

I really admire you Trazzle. That you continue to find, and celebrate, good stuff when the bad stuff you're dealing with is so crap is amazing.

Glad Joe got to a joust. I do declare myself Well Jel. I would love to see one.

Still lighting my candle for you all.

barefootcook · 10/08/2013 20:36

Just want to echo what Tea said really. You are amazing given the uncertainty that you all live with. Sounds like Joe has lots of fun with his days out. Hope things improve and you get some sleep this weekend.

fatzak · 10/08/2013 21:02

Thoughts are with you as usual Trazzle. Have thought about you and Joe a lot this week - I suspect Joe's little friend who you mentioned is local to us. Hugs, thoughts, anything we can send x

tholeon · 10/08/2013 21:04

Glad you have had some good days out, and that Joe was all wide eyed and doing what little boys should be doing. So sorry about his friend, horribly wrong and sad, and must make you think of your worst fears. I hope the nappy changes ease up, so you can all get some more rest.

How is your lovely DD? Mine us the same age, I think, and getting ery decided in her views! X

toffeelolly · 11/08/2013 21:26

Still here thinking of little Joe and yourself's trazzle. Keep strong, so sorry to hear about Joe little friend , god it would your heart. Pray and thinking of your little man everyday.x

Original poster
Trazzletoes · 12/08/2013 06:23

Off to the hospital this morning for a routine check up to review the Imodium.

Rock and roll, my life is! Grin

OP posts:
MrsFrederickWentworth · 12/08/2013 10:59

Hope it goes well, Trazzle, and thinking of you.

TeaMakesItAllPossible · 12/08/2013 13:44
Grin
onedev · 12/08/2013 23:30

Just on hols & catching up with MN Grin. Glad you guys are doing well but so sorry to hear about Joes friend. Still splodging & gingers firmly crossed.

Toomuch2young · 13/08/2013 09:29

Hope the appointment goes ok and just routine.
Sounds like you are managing to get the DCs out and about which must be fab. You must be totally exhausted though and so deserving of a break. Heartbreaking to hear of Joes friend. Absolutely awful. Thinking of you all often x

Quangle · 13/08/2013 22:25

So sorry to hear about Joe's friend. Awful. Hope lovely Joe gets a break from the nappy problems soon and you do too. So hard for you all - still sending thoughts.

YouPutYourRightArmIn · 16/08/2013 06:23

How are you all trazzle??

ajandjjmum · 16/08/2013 17:58

Hope this weekend is good for the Trazzle family. Smile

ToffeeWhirl · 16/08/2013 20:41

Same here. I don't always comment, but you and Joe remain in my thoughts.

Millie2013 · 16/08/2013 23:08

Another one who is still thinking of you all :)

CoteDAzur · 16/08/2013 23:11

Just stopping by to say I'm thinking of you & Joe, Trazzle.

TwentyTinyToes · 17/08/2013 06:29

Thinking of Joe this morning, hope all is ok? X

Millie2013 · 17/08/2013 09:30

Another one who is thinking of you all x

Millie2013 · 17/08/2013 09:31

D'oh my phone said it hadn't posted that last night ;)

Ragusa · 17/08/2013 10:53

Hoping things are going well for all the Trazzles.

MrsFrederickWentworth · 17/08/2013 12:15

Trazzle, continuing to Splodge.

Original poster
Trazzletoes · 19/08/2013 11:17

Sorry for the long silence! Haven't had time to post!

We're back in hospital today to check that there's been no damage to Joe's heart from the treatment. Then he starts the week of injections. We should be going home later but it depends whether he develops a temperature ( likely). However, his counts were done at the weekend and he should be able to fight infection himself so hopefully we would just get sent home with calpol.

He's had his scans today but screamed through the ECG so may need that done again.

He's had a great weekend, meeting Iggle Piggle and Captain Barnacles. He has had the biggest smile on his face. Bigger than we have seen in months.

OP posts:
ajandjjmum · 19/08/2013 13:26

Good to see that things are going according to plan - especially on the big smile front! Hope this week isn't too horrible for Joe. x