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.

Another hoping you've had a break from Peppa. Joe is such a trooper - hope today's been better!

Joe has had a better day today. No pain from the infusion despite his pain meds being lower than yesterday. This has meant his breathing is ok too.

Just other little niggly things to worry about like chest x rays and low blood pressure.

Also another family to pray for as their little boy seems to have relapsed - not neuroblastoma but that's irrelevant. Cancer is just horrific.

So glad to hear Joe had a better day today. You must be exhausted with all the ups and downs.

Sorry about the other little boy . It's just awful.

J is having another blood transfusion this morning.

Thank you SO MUCH for donating blood. You are doing something amazing.

Hope all goes well with the transfusion for Joe this morning. X

Hi Trazzles. I've never posted on one of your threads before but I've read every one of them and think of your gorgeous boy often.
I'm a regular blood donor but have to wait a couple more months until my next session as I had a tattoo done, but I ran a 10k race for life this weekend for my dad and raised just over £250
Sorry for the essay but just wanted you to know I'm another who wishes you and your family all the best x

Glad to hear he is faring better, and in less pain. Hope the transfusion does its job. I am still waiting to hear about whether they'll have my products (!) but hopefully I can start again soon.

I am so sorry about the other little boy. I can't pray as I'm not religious but I will think of this other family, and all those in similar situations.

YAY for biscuit's Baileys flavored blood :o

That's funny, I was thinking of Joe today as dh went to blood donors on his way home from work. Out of one and into another! I can't give anymore because of developing epilepsy, so dh will have to do!

Hope your and Joe's days keep getting better.

Dear Joe. Have made another appointment to give blood, last two blown out due to norovirus then scarlet fever exposure. Really hope to make it this time! X

Still thinking of Joe and all the Trazzles - the continuing highs and lows of the treatment and hospital sound exhausting.

And hurrah for DD being a toddler. So much fun for her to be had.

My candle is lit frequently for Joe and I'm thinking of the family whose DC has relapsed. Cancer is indeed a big bastard.

YAY for mrcowmop (bullmop?) :)

YAY for tholeon and fingers crossed that you stay well enough to get there :)

Hi Trazzles sorry I haven't posted for a while - trying to come to terms with new treatment/palliative care for my DS :-(

I'm sorry Joe's had a rough ride of it the last few days but glad he is no longer in pain. Hope the transfusion gives him some energy.

Chin up, grit your teeth and plaster on a big smile for your little ones - what else can we do?

Xxxxx

Trazz, just wanted to say that I am still thinking of and praying for you all.

min massive hugs
P4B thanks x

Joe finished his first course of antibodies on Friday night and at best could have been discharged yesterday lunchtime... Except that he's carrying nearly 2kg extra fluid and this is also causing him pain so they won't take him off the oxycodone so obviously can't come home like that...

Plus yesterday I went to check his feeding tube was in the right place and his little tummy was full of bile and gas which suggests his digestive system is not really working quite right. Results from the other end tend to suggest its been ok but his tummy is a bit broken again.

So that has to sort before he can leave as well. another long old week in the Trazzle house.

Of course our other fear is that his reaction this time may mean they reduce his dose next time... And that must then correspondingly reduce his chances

Thinking of you and your family x

((hugs) Trazzle. Unbelievably hard for you all.

And ((hugs)) to Min too. I'm so sorry.

I'm giving blood Tuesday purely cos of Joseph, it will be my 30th time but not been for 3 yrs due to my own health issues, they're sorted now but I hadn't got off my arse to re book.
There's a photo on here of my running race for life for him too x

It's a long old road isn't it :(

When will you know if they will reduce his dose next time? Is it possible to give him less, but have more treatments?

How is he dealing with it all?

Lovely to hear MiniTrazz is on her feet - but yes, a worrying time too - suddenly the world is a 'hazzard' again!

How is your Mum doing?

I don't post very often, but I do think of you every day & send you lots of love and strength.
x

They won't give him less but over a longer time. I guess it's the rules of the clinical trial - set number of treatments but they can fiddle with the dose.

Just spoke to DH. J has been poorly overnight, so he's now in isolation with a suspected infection and starting antibiotics later today. So that's another 3-5 days in. His tummy is still gassy so they're pulling the gas out every hour and I have no idea whether or not he can start the vitamin a again tomorrow. He desperately needs it because of the cancer still in his leg.

All sorts of things are running through my head right now. Prob won't get to speak to a dr til tomorrow morning's ward round though. And no idea when Joe's consultant will be back in.

((Hugs))

Oh Trazzles, bloody horrible disease. I hope tomorrow is a better day.

Oh Trazzles ... back to keeping my gingers crossed for your young fighter. I hope there is a Dr around you can talk to today.

Min I am so very sorry. Sending you and P4B ((hugs))

Everything crossed for Joseph. X