Joe vs. The Cancer

[TrazzleMISTLEtoes]

My 3 year old DS, Joseph was diagnosed with the cancer Neuroblastoma in October.

Survival rates are approximately 1 in 3.

He's coming to the end of chemo and so far, chemo is kicking cancer's butt. 3 cheers.

Oh Trazzle.
It's utterly heart wrenching to hear about Joe so miserable and in discomfort .
You are doing everything you possibly can by just being there.
Prayers and thoughts, splodges and gingers crossed here tonight and every night.
Please ask if is anything that we can do at anytime to help.

I'm sorry Joseph is feeling so poorly and that you're having to watch him go through this. He will get through this. I hope he starts feeling better soon and it doesn't drag on for him.

I found out there's a Gruffalo walk in the deep, dark woods in Thorndon country park (near Brentwood). Somewhere to take Joseph when this cancer is beaten.

Dreaming about his funeral, how awful and scary that must be.

Is there anything you need? x

Oh Trazzle it is truly horrendous.

As you know my DS was older going through it and able to verbalise things that maybe Joe can't. His bad time lasted quite a few weeks and now he cannot remember it at all. At the time when he could he said it was easier to sleep through it or go into a zoned out place. Sometimes he couldn't open his eyes but would ask if I was there. I just held his hand the whole time, night and day, and I never left him alone for even a minute (if I wanted the loo I would call someone in to sit with him, would only bath if another family member sat with him). He only wanted to know that he was not alone through it (Christ it makes we weep just remembering and knowing what you are going through).

My son could not take the feeds either so was fed intravenously throughout the bad times so I'm sure they will do this for Joe too if he can't take the feed at all.

Joe knows that you are there, that's the only important thing. This bit of treatment is horrific and all you can do is be there for him.

My love and thoughts are with you all xxxxxx

Hope the night was not too dire.

Poor, poor you, both of you.

Still is absolutely right, my Ds used to do the same for me right from very early on, they get a lot of comfort and strength from your presence and hand holding. I used to find that if I removed my hand Ds woke from his uneasy doze.

It's shit in every sense.

We are here for you and I hope the day has some lighter points.

He won't let me touch him so I'm just sitting where he can see me.

min yes, I suspect we aren't far off tpn already but at least that will keep him going.

I am thinking of you and praying for you both... Keep strong, Joe WILL get better. Must be awful for you to see him like it, we are all rooting for him!!! Xxxxxxxxx

Oh trazzlw how awful for him and for you. It's so unfair, your poor little boy. Just a thought, possibly a stupid one, could you talk about the chemo as like power rangers, splatting (or whatever it is they do ) the bad cells inside him.

I wish there was something we could do. Guess you feel the same. Hope this will soon be a bad memory.

Oh Trazzle, it is so awful what both of you are going through. It must make it even harder that you can't even physically comfort him, the poor poor boy.

As others already have said, and it is also my experience with dd, Joe will later forget all about this period in his life and unless you have photos/hospital bracelet etc. he will not being able to remember any of this at all. Unfortunately, at least in my experience, it will stay with you for the rest of your life.

I suppose the only thing left is to be there so he knows he is not going through this on his own but got you there with him. If he likes a story, lovely, but if even that is too much, then just being there is all you can do.

Has the hospital said anything about where he is at the moment, eg do they expect him to get even worse or do they expect him to start improving soon?

I am so sorry Joe has to go through all this.

Gingers massively crossed that progress is made and alternative, less awful neuroblastoma treatments are developed.

Thinking of you both a lot,

x

to all the Trazzles from me, x

((hugs)) from me too. X.

Thanks all. He has spiked a fever this morning (expected) so is now on antibiotics too. Antibiotics give him diarrhoea

He is entirely within the normal range of what they expect at this stage.

dikkert it might get worse (probably), it might not.

Trazzles I keep thinking about your Joe today. He is a similar age to DS1 which makes my heart lurch. Much strength and love to you all x

Hugs to all of you. Shedding a tear thinking of your poor boy. Sending lots of love and prayers. He is strong Trazzle, remember that-a little fighter! And so are you!

Gingers are crossed that h doesn't get any worse. Sending hugs to you and gentle hugs for Joseph. X

trazzle I watch this thread and hope for good news for you. Don't post much as I don't have any experience but just wanted to say how sorry I am that your boy is going through this and that you are too. I can't imagine how this feels - wishing you both strength to get through this and get well.

Just wanted to pop in to say I'm thinking about you everyday and sending Joe the strength to get better and you (& DH) the strength to get though it and all of you lots of love. It's a living nightmare for all you and it's not bloody fair :(

How is your Mum now?

Another lurker here, I haven't posted before because I don't know the right thing to say, but I am thinking of, you Joe and your family, and wishing you all well! He sounds like an amazing little boy!

Just a quick line to send all good wishes to you and Joe - I'm once again overwhelmed by what Joe is having to go through and how you're both being so utterly brave.

Thinking of you; Northernlurker has a good point, I think - one more day down, never to be suffered again, and one day closer to cure.

Big hug and a

Hang in there Trazzle. It is good to know that it is within the normal range. Poor wee chap. I hope this horrific patch doesn't go on too long.

Another one here thinking of you all. x

Love to Joe & all of you.

Sending love and hope to you all. I hope Joe's fever has come down and the antibiotic effects aren't too bad. I find myself struggling for the right words so just know that I am thinking of you and am always here if you need anything.

Gingers crossed and big splodges x

Morning again, another night over and done with. Hope you are ok, sending very careful and gentle hugs to you both.

Hi Trazzles, (SC here) thinking of you lots and wishing you and your family and little Joe strength for this really grim bit. It must be such a mental strain on you watching him go through it. Also urging the meds to blast those unwanted cells out the door and far away. Hang in there. Sending lots of prayers and positive thoughts, xxx