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

[Trazzletoes]

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.

Trazzle, I have everything crossed that the scans bring good news. x

Everything crossed here for good news from the scans. X

Thinking, praying, crossing and splodging.

So so hard xx

Praying too xx

Willing for you to receive good news and for you to be able to relax a little. So much goodwill out here for all your family xx

Trazzles - I hope the last treatment went well and the scans bring good news.

I was thinking of you and Joe yesterday.
Everything crossed for him here

Am thinking of you all now and the next couple of weeks. And can't imagine how stressful and worried and frightened you are all feeling. I hope you get the news we are all hoping to hear too. Come on Joe. You are a little superstar who is loved by so many of us even though you will never meet us. Hugs, splodges and gingers crossed xxx

Positive thoughts from me too - joe has been so strong to get to this stage and will continue to be so x

Also thinking of you and Joe x

Another one here hoping for good news for Joe and you very soon. x

Hope this week has gone well, Trazzles. X

Sending love and strength hoping for great scan results.

I was 5madthings amd am long time lureker, occasional poster on joes threads xxx

and me. (friend of a friend of yours, have NCd but we have PMd before).

xx

And again from me Trazzle. I will light a candle at the nativity tomorrow.

And from me. Been thinking of you this week.

How have you all been this week??
x

Checking in to say our Joe candle still burns bright. Hoping for strength for you and DH and good news for SuperJoe

All of the above from me, too.

Hi there, he's had a good week - Monday was hearing test, kidney function test and heart echo. His hearing is affected at the very top level - he misses very high frequency sounds but it seems to be no worse than it was in February. We know 1 kidney will go over the next 2 years as well, it's just a case of exactly when.

Then Friday was an MRI of his head, chest and abdomen. Next week he has something called an MIBG where radioactive stuff is injected in to him and it sticks to neuroblastoma and then lights up on the scan. It only sticks to neuroblastoma but there's a small proportion of neuroblastoma tumours that don't suck it up so they have to do the MRI as well.

His recovery this time off treatment is slower but you can see he feels much better than he has in ages. He is smiling SO MUCH! His stomach is tolerating a feed that is harder to digest which means he doesn't need to be connected to it so much during the day. He's walking a tiny bit. He's trying tiny bits of food.

Thank you so much for all your support x

Ooh I forgot - he's also now stopped his medicines for pain relief and anti-sickness. Feels like there is some progress!

Here is hoping for the all clear so you can all reallt celebrate christmas xxx

So pleased for the good week and what sounds like so far so good results.

Trazzle, what good news and progress for Joe and you all .

Wishing you a very peaceful and happy run-up to Christmas x.

That all sounds very positive.

I don't know if this helps but my son was born deaf and can now hear so things can change in that department.