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.

Still following your threads and lurking. Sorry you've had a shit night...hope you get some rest soon. Thinking of you, Joe and the rest of your family xxx

Sounds like an awful night. Praying for you both.

Hold on, Trazzle, hold on xx

Feeling much better now I've consumed my body weight in caffeine and chocolate and it's daylight.

Need to keep reminding myself it's the last week of this ridiculous malarkey.

Apologies for a trite suggestion of milky drink. Was awake and having been lurking wanted to post in a supportive way. Best wishes and much admiration.

Hi Trazzle- hope you both finally got a bed and some sleep. You WILL make it. Don't buckle at this late stage. Am thinking of you all.

Hi my lovely - how was the rest of your day? Not long now kiddo, not long now x

Hey. Joe ended up being kept in for observation last night and we finally settled down at 4am. The upshot to this was that he got his blood transfusion earlier than expected - at 9am so that was good. And it meant he could have his injection as early as possible too. They can bring it forward by 2 hours on the previous day. The earlier the better as if we have to go in, it's better at 7pm than midnight!

He's already had a temperature tonight but because he's already had all the investigations done in the last 48 hours then we don't have to go to hospital unless he becomes unwell. So it's a bit of a tense few hours! Tomorrow night though, we will have to go in again. Boo!

Btw a milky drink was in no way a trite suggestion! If have killed for one but no access to hot chocolate and I couldn't leave Joe as one side of the trolley was down and he was hanging off the edge! He likes to be by the edges and corners of things.

Great that he got seen to earlier :) I hope you can all get a good nights sleep at home tonight! Bugger that you have to go in tomorrow night as well - but really, there is light at the end of the tunnel now isn't there?

The need some Hospital Mums don't they - people doing nice things for people, like getting them a hot chocolate :)

Hey Trazzle - thinking about you and Joe. Hope your okay.

Sending well wishes into the universe

Onwards, onwards, onwards Hang in there Trazzles.

I lost this thread but gave blood this week and have been thinking of you and Joe. So sorry to see that you had such an awful night on Tuesday. I hope things are a bit calmer now.

Delighted to see that Joe is able to get to nursery for a bit now. It must mean so much to see him doing normal things.

Happy and hopefully vibes from all the Turnips too

Still here and still thinking of you and dear joe x

He's had a good week last week, less sick than last time and coped reasonably well. Had a call yesterday from one of the Doctors to say one of his blood tests had grown a nasty bug and how was he doing? He was absolutely fine so it looks like it isn't him that is infected but that it got picked up off his skin or something - common and that less there. Phew! If it gets in to his line then it would make him extremely unwell and delay his treatment a few weeks and could lead to surgery to remove his line etc.

We are due in tomorrow to start hopefully the last week in hospital. I called the ward this afternoon and so far as planned there's no bed available for him - lots of poorly children at the moment. I really hope they can find a way to squeeze him in. We're so close to the end of this bit now. I just want it over.

I've got yet another cold as well. Can't wait to start getting some sleep again sometime!

So close to the end of this load of treatment. Keep on pushing through Trazzles.

Really pleased to hear Joe's doing well and not been as sick as previously. That's great. Will you be able to get out and do some gentle stuff again with him once this immunotherapy is over and once you've all had some proper sleep??

Look how far you've come. What a road, but you've come a long way along it

Glad he's doing well. You've all come so far with this & nearly there now. Good luck for this week. Splodging & gingers crossed as always b

I'm so glad to hear Joe has had a good week and really hope he gets a hospital bed tomorrow. I'm not surprised you just want this bit all over and done with.

Pleased to report that a bed was found and Joe is well on his way through the first course of antibodies this week. He has coped much much better with the pain this week - he hasn't needed it to be increased from 30 whereas usually it has to go up to 40 and even then he's still struggling.

At least the first few hours have gone well...

Gosh I've got everything crossed for you; for this week and beyond. I am so in awe at how you have coped/got through/stayed sane this last year. I wish your dearest little boy a joyous return to proper childhood very soon xx

Excellent, gingers crossed and ginger in my gin ( great combo with angostura) so lots of gingers around for you. Praying and thinking candles in my mind. V close to the finishing line and he will be the best winner ever.

Great news! I hope the next few hours in hospital pass quickly and uneventfully.

Nemno said it perfectly

Yes indeed. Thinking of you and little Joe and hoping everything stays smooth and on the up and up.