High dose chemo and beyond. Onwards and upwards hopefully!

[Trazzletoes]

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

So glad he's feeling more comfortable. Willing those neutrophils to start regenerating.

Come on phils! Fantastic playing news, he must feel so much better with his mouth. What a trooper. X

Really glad to see that Joe laughed the other day and that he is able to talk again .

You are amazingly positive and somehow always on the ball with his treatment and what it all means, even though you must be learning as you go. Joe is lucky to have you on his side.

Wishing you all the best and big candle splodges from Sussex (and a former Essex girl ).

Just to let you know that Joseph is still plodding along. His feeds are going up slowly, his weight is coming down slowly, it's all still going in the right direction.

Found out today though that one of his friends has relapsed immediately after finishing treatment and nothing can be done. We're absolutely devastated for the family and it just goes to show that we can't ever relax, we can't ever take our eyes off the ball. Cancer will always be there looming in the background.

It is just so awful for them.

Have not posted much recently Trazzle but you and yours have been very much in my thoughs. Glad to hear Joe is still heading in the right direction. So very sorry to hear about his friend though.

Keeping everything crossed for Joe and the Trazzle family x

OH that is terrible about J's friend. What a cruel, hideous illness.

Good Joe's going in the right direction.

I am sending you and

I haven't posted on your thread for a while but you, Joseph, and all the Trazzle's are thought about every day.

So glad Joseph continues to improve. Slowly but surely he will get there. His laughter and smiles must be such a tonic for you.

How awful for his friend. Life can be so cruel. Sending thoughts and prayers for them as well as you. X

Sounds like things are going well. I often think about you and Joe- odd, given I don't even know your name! You are both an inspiration to many. I am really sorry to hear about Joe's friend. What a cruel thing to happen after all that hideous treatment.

So sorry to hear about your friends - it really is a bastard. Very pleased to hear about Joe though - GO JOE!

I can only echo everyone else.

It's lovely to hear Joe is moving in the right direction.

So sorry to hear about his friend, so cruel

Good to read that Joe is progressing. A big Yuck to all the clots and mouth scabs though!

So sorry for that other family

Oh Trazzletoes how unbelievably tragic and sad. No parent should ever have to suffer that. Am sure such news rocks you to your core also.

Sounds like Joe is doing well. I think of you and hope for you every day x.

You must be so frightened. Keeping everything crossed that Joe keeps heading in the right direction. Thinking of you. X

Hey trazzle. I am so sorry to hear about Joes friend, don't have words to think how the family must be feeling. So awful.
Am glad to hear Joe is making steady progress he is a superstar and you must be so proud with how he is coping.

So good to here more positives from you about joe, but so sad for the other family. That must have hit you hard. How are you doing? Are you keeping your own fluids up better now?

How is dd doing? And dh of course. You are all going through this, you and the docs look after joe, but you must remember to look after yourselves.

Squidgy splodge :)

So very, very sad for Joes's friend. Glad that Joe keeps plodding in the right direction

Lovely to hear that Joe's plodding on in the right direction, has your dd stayed well recently?

What a shocker for the other family though. After everything they must have been through this is just beyond cruel.

Hope Joe has a good week and things keep going according to plan

Xxx

Hi, have had a hell of a day today. Can't stop crying, for various reasons.

Still so utterly gutted for Joe's friend and the family. They have been so positive and a huge support to us through all of this. They don't deserve this (well, who does?).

Joe had a great morning with DH, sitting in a special reclining chair (ie not in bed) for a few hours this morning and playing with his Playmobil. Predictably exhausted for the afternoon though and has just cried the whole time.

My teeth feel funny and I'm scared I'm going to need a filling. My eye that I have problems with seems a bit odd as well and I'm terrified that something is not right again with my retina but I can't get enough of a break to get to the optician and eye problems are dealt with in the "other" hospital.

DH and I have had a couple of arguments. I'm sure it's just the stress of the situation but I've always assumed we are unbreakable - we've been through so much together. And now I'm starting to doubt whether we can get through this unscathed.

There are other family issues going on as well, plus my DM has had some news which the Drs have told her not to worry about (at the moment). Basically, they've looked at her lungs and they look like she's a smoker. She isn't, and never has been. I can't see how this can possibly be a good thing.

Joe is still plodding along but the Drs have now come out and said that he isn't recovering as quickly as they expect. He's pretty stable and the numbers are improving marginally every day but he ought to be much better than this by now

We also got the results of his tumour biopsy today. Parts of the tumour had changed to non-scary neuroblastoma, but the tumour was only 50-65% dead. His consultant has stressed that these results have no impact on treatment or outcomes, but all the other parents I speak to have children, some of whom started with more cancer than Joe, who finished the chemo cancer-free (Joe wasn't - it's still in his leg) and the tumours were almost completely dead.

It's hard not to feel scared about the future. Most of his hair has fallen out but there's a patch that's still there. The high dose chemo hasn't even killed all his hair follicles but we are expecting it to have killed all the cancer...

Oh Trazzle - you've had to cope with so much, you've got to expect yourself to fold from time to time. Awful for Joe's friend, but the last thing they would want is you making your own situation worse for them. And with you and DH - it's the old story - we always take out things on those we love the most.

With the other stuff - I know it's all really important - but you have to listen to what the doctors say. In my experience they will not feed you bullshit - if anything they tend to look at the worst situation. The consultant says it has no impact on the outcome - try and trust his judgement.

Sending love to you all.

Sending you such a big hug (hope you don't mind as I don't know you but have lurked on here for months!).

Am so sorry that no one can give you the reassurance that would help you get through this, but I'm (as well as everyone else posting & lurking) sending you all the positive vibes & strength that we can.

It's completely understandable that the news of Joe's friend will have knocked you & DH for six & have reverberations on everything around you.

I know the news on Joe hasn't been great, but while slower than expected, he hasn't declined and you're seeing gradual improvements in how he is which must be a good sign.

I'm rambling now & not dressed for it, so I'll sign off, can't do flowers or wine glasses so will add these instead xx

Oh Trazzle, you've such a lot on your plate, it's not surprising it's taking its toll on you & your DH.

Wish I could say something helpful but all I will say is that you're all amazingly strong & doing the absolute best for Joe & that's all you can ask for.

Much love, prayers & positive thoughts. Gingers crossed & splodging as brightly as I can. xx

Positive thoughts and prayers coming your way Trazzle.

onedev that's very nice of you to say, thank you, but I'm not doing the best I can. I've spent the afternoon yelling at my beautiful son. My son who is sick. I've been yelling at him. Yelling at a small child who is ill and in pain and has done nothing at all to deserve being shouted at. I'm not a good mother at all. Not at all.