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.

No, no and no

You're on the right lines but you need to think of something more innocuous - no flying balls(!), sticks or tweezers.

Laughing at subbuteo - he doesn't quite have the coordination for that.

Good luck for Joe's transfusions and injections this afternoon.

Guess who?

Buffy you cheat! You read that on Facebook [ grin]

Yes, Guess Who. Not in general a game that needs a health warning. Only my son could graze his face on it.

Hand on heart I hadn't seen that FB update loved the silly walking photo.

Definitely not a game I'd imagine getting injured by.

How's Joe doing?

Hope today went ok and all as it should xx

So he got platelets today at least. By the time they and his injection were done, the clinic would have closed well before he finished his blood transfusion (they take 3(!) hours) and as it wasn't desperate I suspect the nurses had better things to do than find a ward to take Joe for an hour so they sent us home. Back early tomorrow to get the blood in.

And, of course, back in now anyway as he has a temperature. We'll see what happens...

Well, time for an update. Joe was neutropenic this morning. This means he didn't have enough white blood cells to fight off an infection. Standard procedure is if a child is neutropenic and they get a fever = automatic antibiotics.

Joe is fine in himself. I am as sure as I can be that he doesn't have an infection. But they have rerun his bloods. If he's still neutropenic ( likely) then he will be on strong antibiotics for several days. This will be a massive step backwards for him. Massive. If he's not neutropenic ( considerably less likely) then we may be able to go home.

I'm so tired. I am so fucking fed up of this shit. I know its 4 weeks left but I can't see how I'm even going to make it through tomorrow. I'm just exhausted. I've got nothing left. I just can't take this anymore. I can't cope with the Doctors repeatedly making Joseph more and more sick. I'm just tired of having to live with this. I just don't want to do it anymore.

Oh Trazzle. Chin up and try and get some sleep xx
(())

It's such shit Trazzles but you've all come SO far - hang in there and as madwomen says, try to have a cup of tea and get some sleep.

Xx You and Joe are often in my thoughts and prayers

I can't sleep. I'm sat on a chair like we used to have at school.

May be going home after all. Still waiting on one more blood result. He wasn't neutropenic this morning, just nearly neutropenic.

I've been up for 22 hours now. Joe usually wakes up being sick at around 5am so if I'm lucky I may get an hour's sleep tonight. Have to be back in for a full day at hospital by 11am so no chance of rest in the day.

And then like this every night for the rest of the week.

No. Not going home. His blood pressure is too low.

Any guess as to WHY that is? Well,because he didn't get his blood transfusion today

It was yesterday , wasn't it.

I am past caring a flying fuck what they do with us.

I just need some fucking sleep.

Hope you are getting some sleep Trazzles. I haven't posted before as I didn't think anything I could say would help, but you are all often in my thoughts.

Nope. Sadly still awake. No sign of any kind if bed.

So nearly there. Can you go for a wee walk if he's sleeping?

Such a long journey for you all, it's no wonder you are exhausted xx

Sorry Trazzle, that is beyond poor. A stupid question, but why can't they find you a bed? Still hope you are managing to snatch some sleep

Thinking of you both. Can you get a milky drink? So sorry you're having such an awful time tonight.

We've been in the treatment room this while time. There's no space for a parent bed. Joe is sleeping on a trolley.

They are sorting his bed on the ward now. I'll have a bed then but can't be fucked to go to the car to get my clothes.

You poor thing. I am so desperately sorry, and wish that there was any way to offer help or comfort to you. I don't know your whole story, as I have only read a small part of this thread, but I would give so much to be able to help. I wish at least I were a writer, so I could give some power to my words. I hope you are asleep at last, getting a moment of respite.

Oh trazzle. I know youre his mum but is there anyone who coxuld do a shift with j, allow you to get 6 hours inbroken sleep? You must be exhausted

Just this final stretch, you're nearly there. You must be exhausted from the past year not just last night. Hope you both got some sleep in the end and that the coming days are as kind as poss.

Sorry it's so so hard - hope you've managed to get some rest and that today is better

Thinking of you Trazzle. It is just so damn hard and unfair. Keep putting one foot in front of the other and know that there are many of us virtually holding your hand. Wish I could do something more practical. x

Aaaaarrrrgggghhhhhh Trazzles a horrible, horrible night for you and Joe. I think when the end of treatment is in sight then it actually gets harder to deal with any delays/anything that may elongate the whole process. You are exhausted and everything is shit. But you are also amazing and you are doing everything you can to help your son through this. Much love and hugs to you xxxxx