High dose chemo and beyond. Onwards and upwards hopefully!

[Trazzletoes]

Another continuation thread for Joseph's ongoing fight against the aggressive cancer, neuroblastoma.

Sending neutrophils to Joe over the ether.

Right, so neutrophils had been hovering around 0.3 all weekend - today they are actively up to 0.44 (hooray!).

Joe woke up on Monday with his mouth basically sealed shut from bleeding lips, but with still a small hole to breathe through. Then of course last night was the first time he tried to be sick in ages... He just brought up a bit of mucus but it was very distressing to both of us and had to be suctioned out.

Today we realised there was another clot in his mouth - either attached to his lips/gums or one off the roof of his mouth. Either way it's a choking hazard but is apparently not loose at the moment. We've managed to get some Drs on the case but there doesn't seem to be much we can do about the choking except hope that nothing comes loose inside before the crust breaks off his lips and especially not while we are both asleep.

His tummy went down by 3cm today! ( high 5!) and he is still losing weight. Once again neutrophils are key though. They will mend his mouth and stop anything nasty happening there.

Oh and yesterday morning he laughed. Twice one of the most beautiful sounds I've ever heard.

High 5, don't want to leave you hanging :)

Yay for neutrophils and for slimmer tummy (I need me one of those)

Onwards and upwards

Splodgey dance :)

I can just imagine his laughter, what a brave little soldier you have there trazzles. His poor mouth sounds horrific, I hope he is not in any pain with it.

My splodge is still shining bright in Glasgow for you all. X

Trazzle, lovely, laughter and neutrophils. Sorry about the mouth, but onwards and upwards.

Hooray for Joe's laugh!! A beautiful sound from any child I think, but even more so for you. And more hooray for shrinking tummy and increasing neutrophils!

Sorry to hear about the clot in the mouth-fingers crossed it stays firmly attached over night.

How are you doing Trazzles?

Splodging away and crossing gingers...

Ahhh trazzles - that's lovely to hear about Joe laughing again, and great news re. the neutrophils and shrinking tum! Hope the mouth heals very soon xx

So wonderful to hear of the laughter - what prompted it? Can't believe what a total hero he is. The mouth sounds awful - will pray tonight, for neutrophils to keep rising.
Splodgy splodgy for him and you, Trazzles. I hope you guys have a peaceful, very non-eventful night.

He really is a little hero, you all are! Hi Five indeed. Xxx

What a little trooper. Much love to you all.

Hi Trazzle

Great news about the laughing and neutrophils. I hope his mouth clears up soon and he continues to improve.

So pleased to hear he laughed. What a wonderful development.

Hoping for a continued rise in neutrophils so his body can continue to repair.

Thinking of you and yours still.

How lovely to hear him laugh. Must be like hearing him laugh for the first time all over again! He is such an amazing, brave little boy - you must be so proud of him. Everything crossed that he keeps improving, particularly his poorly mouth. xxx

Here's hoping that there'll be much more laughter from Joe and all of your family very soon

Lovely news. Must be like music to your ears hearing his laugh. So happy that his neutrophils are on the up - may they continue onwards and upwards. Wishing his mouth better soon xx

Bless him laughing, I hope there is more and more of it xx

Yay for laughter and neutrophils! I hope that yesterday and today are going in the same direction.

Yes yes yes! Yesterday a dr came along and pulled the scab off Joe's mouth. Lots of blood and screaming but it was already much better. Then overnight he coughed out the massive clot on the roof of his mouth!!!! He can talk again!

He's been a lot brighter today as a result. He's been playing skittles from his bed and has been interested in trying out his Zimmer frame(!). I'm too young for my child to have a Zimmer frame!!!

We thought his neutrophils were coming up but they aren't. They're still trailing along at quite low. Which is a concern. And he has tested positive for c. Diff again.

But he's smiling and I'll take that for today!

Fantastic re the talking. Grr re. the neutrophils. They seem to be bouncing around all over the place, which must be hard to deal with.

Similing is BRILLIANT.

Here's to a smily weekend for you all.

Come on neutrophils! Glad to hear Joe is feeling up to playing and smiling, that is lovely!

Ooh that doc is brave!! But good on him! Anything that makes him feel less sick must be a good thing! He'll be zimming around the place in no time!

Splodge!

So glad to have a more positive post. Well done Joe! Wonderful to hear him laugh and see him play - fab, fab, fab! I remember seeing my DS use a Zimmer frame for the first time - it was shocking but good to see him upright. Hopefully Joe will not need it for long. Xxx

P4B they can, yes, and they will do if they go too low but at the moment they are just steady around 0.3.

The problem with giving him GCSF now is that we will then have to stop again and wait again for his neutrophils to drop and then recover so its all extra time which isn't necessary at the moment.

After his transplant he was on GCSF until his neutrophils were over 1 for 2 days then they stop it and allow the neutrophils to fall a bit (normally only down to 0.8 or 0.6 though!) and then recover to above 0.8 just to make sure that the bone marrow has recovered and is working properly by itself without help... I hope that makes sense!