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Joe vs. The Cancer

(1000 Posts)
TrazzleMISTLEtoes Sat 08-Dec-12 23:26:34

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.

superfluouscurves Tue 19-Feb-13 09:45:21

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

dikkertjedap Tue 19-Feb-13 09:49:02

Hope the fever has come down. Also hope that last night wasn't too bad all things considering. Another night gone, another step closer to recovery.

Hope that Joe will feel a little better today.

x

Trazzletoes Tue 19-Feb-13 13:42:59

Hi all, thanks for your good wishes. Joe is still very much under the weather but everything is well controlled by his medication.

He was switched to a different feed yesterday to see if he could digest it more easily and coped ok with it during the day. Overnight however, he stopped tolerating it so this evening he is being switched to TPN which means he will be fed through his Hickman line instead.

He is still having some feed but at a very low rate so his digestive system doesn't forget what it needs to do.

The Drs are expecting that (fingers crossed) tomorrow will be his worst day and he should hopefully slowly start to improve from there.

Although he is very poorly, he is not as bad (yet!) as we had feared or imagined - long may that continue!

Sound like Joe is doing as well as we could hope really. How are YOU doing Trazzle?

Gosh. I hope that tomorrow he does as well as he's done so far. Gingers crossed.

And thinking of you and your DH too

bobkate Tue 19-Feb-13 20:12:07

Keeping everything crossed still x

ShiftyFades Tue 19-Feb-13 20:13:33

I hope his tummy copes a bit better with less to do. Always thinking of you all.
How is his fever? And how are you?

You are amazing xxx

dikkertjedap Tue 19-Feb-13 20:16:45

Hope that the doctors are right and tomorrow is his worse day (horrible as it is) so that from then on it will be onwards and upwards.

How are you yourself? Are you all the time with Joe or can you alternate with your DH?

Thinking of you lots and wishing you lots and lots of positive energy,
x

thewhistler Tue 19-Feb-13 20:28:07

Fingers, gingers, singers all crossed for tonight tomorrow and afterwards.

Trazzletoes Tue 19-Feb-13 20:36:22

Hi, right, ok...

First, the Doctor mis-calculated and actually today is worst day! Yay! HOWEVER, there is the obvious MASSIVE caveat that anything still can and may well go wrong. He is still at risk of a massively awful infection, he is still at risk of liver disease etc. we are a very long way from out of the woods yet.

I'm fine - still shaking off the remnants off this cold so I have a cracking headache but ill live. DH and I are both bone-tired. He gave me a good rest last weekend but already we are both shattered again. He is off work for a couple of days this week so we should be able to give each other a bit of a break then.

Joe's tummy has been much more settled today. I was hoping I might get a bit more sleep tonight but the pumps on his new feed are setting off alarms about every 5 minutes. And they are extremely loud. And there's nothing the nurses can do. <cries>

dikkertjedap Tue 19-Feb-13 20:50:55

Very much hope that the doctors are right and today was his worst day ...

They will have to caveat, but all gingers crossed that none of these things will apply to Joe.

Very understanding that both you and your DH (and probably Joe as well) are so so tired, all the stress, all the waking hours. How hard that the feed pump keeps setting off the alarm, does it not disturb Joe??? Could they somehow turn the volume down and monitor by looking at their screens (assuming that there are lots of monitors being watched by the nurses)?

I very much hope you are able to sleep a bit and also that Joe manages to get a good rest.

x

ShiftyFades Tue 19-Feb-13 21:45:13

Oh the alarms sound shitty sad
Hope you manage some rest despite them xxx

onedev Tue 19-Feb-13 22:06:21

The alarms sound crap - but hopeful that today's been the worst day & things will now be on the up.

Trazzletoes Tue 19-Feb-13 22:11:28

They've changed the really loud pump although this one still goes off just less frequently. Yes, that does disturb him.

The other one doesn't disturb him as much but it wakes me up and is going off a few times an hour so far.

The nurses only know the alarm is going off if I call them. They can't monitor/hear it from outside the room.

IwishIwasmoreorganised Tue 19-Feb-13 22:14:22

Fingers crossed that today really is as bad as it gets.

The pump thing sounds exhausting - is it positional? Hopefully it will settle down and let you both get some rest.

Xx

Hassled Tue 19-Feb-13 22:19:38

Thinking of you and Joe - everything is crossed that this is the peak of the nastiness, and you'll be on a nice, gentle slope down to normality from here.

dikkertjedap Tue 19-Feb-13 22:31:21

I hope that whatever is setting off the pump is settling down so Joe and you both manage to sleep.

Let's hope he doesn't need this pump for long, so both of you manage to get some quality sleep.

Trazzletoes Tue 19-Feb-13 22:34:14

I shouldn't moan really, noisy pumps really are the least of my worries grin fingers tightly crossed that he will feel even a tiny bit better in the morning and that he at least gets some good quality rest. I'm sure I will too (don't start telling me off!) but his is more important.

Trazzletoes Tue 19-Feb-13 22:36:28

One of the ones that keeps going off is running a thick liquid at a very slow rate so the machine keeps thinking the flow has stopped so it assumes it is blocked so the alarm goes off. There is nothing the nurses can do about that. The other one I think seems mostly ok now provided that Joe doesn't roll on the clip in his sleep and clamp the line shut himself grin

Night.

dikkertjedap Tue 19-Feb-13 22:37:36

Gingers, fingers, everything, crossed, that Joe will start feeling better tomorrow.

That would be such lovely news.

x

thewhistler Tue 19-Feb-13 23:04:01

Night, and then again, if you reach for this in frustration in the wee sma' hours, hi, and thinking of you.

I'm normally thinking of you at 3 or 4 anyway.

farewellfarewell Tue 19-Feb-13 23:11:34

So upsetting to read about your little pet. I pray he will make a full recovery and never remember all that is happening right now. Your post about your hair made me weep. My ds (3) insists my hair be the same esp when he is ill/tired. You are doing a great job with Joe, another day is done, every day is a step closer to health x

Yes as hassled said, wishing with everything ove got that you're on a gentle slope back to normality now.

ShiftyFades Wed 20-Feb-13 07:59:20

Morning, how are you both doing today? Did you manage to get some rest?
Gingers crossed that today marks the first day of feeling better xxx

Trazzletoes Wed 20-Feb-13 08:27:27

Well, of course the pumps turned out to be the least of our worries!

Diarrhoea of biblical proportions and 2 epic nosebleeds made the night a lot more fun grin

Still, we slept reasonably well after 2 and they turned off his morphine to stop the pump beeping and it hasn't really made him any more unsettled. Can't remember whether I said he spiked another fever last night...

Poor little dude just feels absolutely rotten, but we are getting through this slowly. Today is another day.

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