Joseph's ongoing journey with Neuroblastoma

[Trazzletoes]

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.

Hope the radiotherapy is going smoothly so far.

Yay for Joe!! So glad to read the latest, Trazzles, and wishing you every bit of luck and stamina for radiotherapy (and life with two small children in general!)

Not allowed to give blood, but can and do support CLIC S. Will think of Joe next time I do, along with the other MN children who may have had contact with them in some way xx

Wow.

Had a shit day.

now

and just for good measure

Just checking in with a Wednesday splodge :)

splodging as well. I imagine you must be knackered this week with all the emotion last week.

I think you said the radiotherapy was starting this week, so I hope that's going well and that you're still managing to have some nice family time.

Hi, radiotherapy is going fine so far, thanks. Just early mornings... I'm not used to them!! DD was poorly on Monday, perfectly fine yesterday and then poorly again today (this after a totally unnecessary ambulance ride on Sunday for her and me). Really hoping she starts to feel better soon! It makes me very on edge to know there are d&v germs in the house.

J is coping really well with the daily anaesthetics and they aren't expecting him to have any side effects until next week or the week after.

He has started sucking his thumb again and he has also started drinking milk again at bedtime and first thing after he wakes up from his anaesthetic... The first day he got really cross with me(!) because I had only got him steamed milk and not hot chocolate .

The people from Make a Wish came round this evening to speak to Joe. He was very charming and came out with some brilliant lines to the people who came. They think that it could even be possible for us to get to Florida . I am not getting my hopes up because no doubt it won't be possible because of Joe's treatment regime but my word it would be incredible

Oh, I so hope you can go to Florida. That would be fab. What did he say to the Make a Wish people?

Glad to hear everything is going OK with radiotherapy so far. But ambulance trips? that sounds disturbing...

Brilliant about the milk and hot chocolate. I bet you'd willingly give him gallons of it.

So glad all is going well, aww to thumb suckimg, my ds4 still sicks his, its very sweet :)

Hope dd is better ASAP and omg how amazing would Florida be! Obviously you would Mich rather not be in this situation but as you are take whatever help, support etc you are offered.

Much love and strength xxx

Sending love to you all xxx

I know re: ambulance! DD was really wheezy on Sunday and breathing noisily and fast. It sounded like a mild asthma attack so I called 111 to get an OOH appt. because she's still little and was having breathing difficulties they insisted on sending an ambulance for her. Popped her on a nebuliser and by the time we were at hospital she was back to her cheeky self in a "really? Why did she need an ambulance?" Way. still it got her sorted out quickly.

J was so cute though. Telling her not to worry about the mask and not to be upset when they put the sats monitor on because it wouldn't hurt and she would get used to it etc ...basically things you should never hear a child saying!

Joe was just making me laugh last night with his wishes because he's 3 and doesn't really understand these things. They asked whether he would rather go to Florida to Disney or meet Fireman Sam. So of course he says meet Fireman Sam...

That's so lovely

Ahh bless Joe. He sounds like such a sweetie. Really hope Florida becomes a reality. X

What a lovely, thoughtful and kind boy you have there Trazzles. And glad DD was ok after being nebulised. May the D&V germs feck off soon.

I've just been looking at the Make A Wish website. What an amazing organisation. And at Fireman Sam. Love that meeting him is his preferred option. Got to love a 3YO's perspective.

What an absolutely adorable big brother Joe is to his little sister. It's very sweet that he was using what he's learned in hospital to help her. Very funny that he wants to meet Fireman Sam more than go to Disney World .

I hope your DD is feeling better today and that Joe is continuing to cope well with his daily treatment.

I love that Joe was such a part of the Make a Wish meeting. I bet they adored meeting him. Fingers crossed for Florida ( if that is what all the Trazzles most want).

Bless Joe and his medical reassurance for your DD. What a sweetie. Hope you do get to go to Florida but clearly Joe would also be thrilled with meeting Fireman Sam.

Dear Joe, that is so cute that he was giving his little sister advice, but sad also that he knows so much about medical stuff. Will make a donation to make a wish, then i will feel like I am doing something for him. Also - for others - have discovered something called give as you live where a donation is made to a charity of your choice every time you Internet shop, worth googling. Glad little dd is on the mend, I think they were right sending the ambulance, you can't mess with babies and breathing stuff. Sorry about the d and v as well though! Really really hope you make Florida x

Glad DD was ok; really hope that Fireman Sam or Florida materialises for Joe.

My friend, when I was in school went to Florida with make a wish or dream flight and she had an amazing time.

Florida is lovely for children, maybe everybody could get their wish.

aaah - he sounds so lovely and far too wise for his years. I'm glad he's continuing to cope with the treatment and there must be part of you glad to see him sucking his thumb, just because he can!

gingers crossed here for Florida too, or whatever works best for all of you.

Joe shouldn't have to know about masks and sats monitors BUT as he does isn't it great that you and the medical team have done such a brilliant job of ensuring he understands (as much as needs to) and he isn't scared by it. Well done you

Great news about Florida being on the cards, still praying and splodging for you guys.

Thanks for the update, what a love - trying to reassure his little sister! Gorgeous boy. Glad the radiotherapy is going ok so far and that he's tolerating the daily meds ok. Will keep splodging away for you and him and hoping the D&V bugs bugger off quicksmart x

aww bless Joe he sounds wonderful. will keep my fingers crossed for florida and fireman sam! he deserves it for sure.

what a lovely big brother he was! and don't be embarrassed about the ambulance ride, it was the 111 operator's decision and I am sure it is best that the err on the side of caution.

That's brilliant and I bet Joe loved being able to reassure your DD with the benefit of his superior experience!