Mar 13

So day 4 at Hospice.

Joshua is, for the want of a better word, comatose. We’ve had no alert reaction since Friday night when the Scott’s brought William and Aiden to say goodbye. Julia & Stace had a couple of open eye moments on Saturday when they visited.

My heart feels big knowing my son has friends with big hearts who wanted to say goodbye in person. That’s a tough, tough thing to do – I can attest to having moments where being in the room seems to hard for me.

He’s having moments of verbalization with a hand to his forehead so we’re increasing pain medication again today. Between the tumors, the hydrocephaly and Joshua’s natural high pain threshold, I can’t even imagine how painful it must be to make him vocalize.

We can only hope that today he manages to let all the pain go.

Mar 8

Long long night last night.

Joshua is increasingly confused and he wakes up and wants to do things he shouldn’t – like getting himself out of the bed to go to the bathroom at 4.30am.

He tends to wake up and think its 6months or so ago, but with smatterings of now, and wants to know why we let him sleep so long because now he’s missed dinner! Unfortunately, his stomach doesn’t digest any longer, so food is out of the question.

I think one of the things I’ll suggest to the hospital is a handout telling you what to expect when you take your child home to die. Because this is not what was expected. Not at all.

Of course, Tony tells me its because he takes after his mother and he’s a stubborn cuss and thats how he’s still going.

Mar 4

We really thought we would have had to move Joshua to the Hospice in Lowry this weekend. But yet again, he’s bucking the odds.

Yesterday involved spending most of the day on the couch with us drinking Fanta, of all things. He managed to keep it all down which surprised us all no end. They changed up his med dosages yesterday and they knocked him out about 4 pm and he’s been pretty  sleepy since then.

He becoming a little less ‘together’ each day – a combo of tumor growth and lack of oxygen – he’s still talking, but often not relevant to the conversation.

So no ICC for us this weekend.

Mar 2

Some days it seems as if the time is here, then low and behold Joshua has a lucid, alert day and we’re left trying to figure out where we’re at.

His body is slowly starting to shut down. His stomach has stopped digesting, so he can’t even keep water down now. He still converses with us, but often he’s very confused about what he thinks we’re talking about and his short term memory only has moments. He drops off to sleep at a moments notice and is sleeping the majority of the time now.

That all said, he’s still got his funny bone working in there. He asked us this morning what our plans for the weekend were, as he heard us talking about zip lining… he then declared he didn’t quite feel up to zip lining at the moment! (While it was a funny moment Tony and I ran with, the whole premise was an invention he thought he’d heard. We figure he must be having good dreams at least.)

Its a situation I never thought I’d be in – wanting to hold on to every moment, yet wishing the end was here so he can stop suffering.

Feb 28

Tired today – too much listening to the baby monitor, and getting up for random puking episodes. Coffee… I don’t think you’ll be enough today.
 
Joshua isn’t doing well. We realized he was suffering from OIC late last week, which meant all the fun stuff to release that. Little bugger decided he kinda like enemas because he felt so much better after – only my kid!
 
But he’s not eating (going on a week now), drinking little, and pretty much sleeping the day away.
 
Our lovely Hospice Nurse, Dora, has warned us this might not change and he might just slip further in to sleeping all day. So we’re just spending time with him as we can.
 
Remember way back when, I complained about Cancer is a series of hurry up and wait? Well, we’re back there again, feeling a bit helpless.

Feb 23

Hmmm… so much for the going pretty well.

Joshua started vomiting at 6pm last night, and has kept going since. Not the greatest of nights sleep for anyone involved. We thought we’d gotten it sorted but then, off we went again.

Since it seems every time something goes down, it comes back up, I think its a bug – and there will be no more things going down until tomorrow. Then we’ll try again. Cross fingers its a bug, not a reaction to any of his medications (both the hydromorphone and the midazolam can have the effect of nausea… and Joshua does have a nasty habit of having reactions to stuff he shouldn’t!).

Thank god for emesis bags, because were on our third set of sheets and covers – without them we’d be ripping up carpet and the washing machine would have been asking for overtime pay and penal rates!

 

Feb 26: UPDATE : Nope – Opioid induced constipation, not a bug. Poor guy. Measures to rectify are somewhat… err… extreme.

Feb 14th

Rather than the treatments we thought we’d be having, yesterday afternoon was another Avastin treatment (it helps to strangle blood flow to the tumors so helps reduce swelling somewhat), starting a short sharp course of steroids until the avast in kicks in; then icing on the cake – he’s now connected to a Dilaudid and Versed continuous pump.

I don’t know Joshua really understood how much of a headache he’s been constantly having until the dilaudid took it away. So despite it being a not great thing, its a good thing.

Feb 13

And Life Changes Again.

You know when you see the romcom movie with the hero riding on his horse behind the perfectly presented girl who pulls aside the branch only to let it go to smack in to our hapless hero’s face… Well, last week was the pile of horse shit that our hapless hero landed in followed by the rose bush he then got dragged through.

Until now it’s been hard to tell anything was wrong with Joshua other than no hair and a big scar. His doctors have been amazed at how well functioning he’s been until this point. It’s pretty unusual.

But that changed last week.

His tumors are progressing rapidly and, to put it baldly, his MRI looks like swiss cheese he has so much tumor present. And now, 18 months on, Joshua has reached the point that symptoms and physical changes are coming rapidly. So far; short term memory loss, varying types of seizures, 6th nerve loss in the face (he sounds as if he’s had a stroke) and progressive numbness to the left arm and the left leg should follow.

Doctors have warned us that we could be looking at a matter of days, weeks, but most likely not months.

We were to start the CDK4/6 study today, but Joshua has decided not to proceed. This means we can now do all we can (pain pumps, weed etc etc) to keep him comfortable and happy for this last period.

If you do try contact us, please be patient. We’ve got a lot on our plate currently.

 

 

 

 

Feb 6

In the lead up to going in to the CDK4/6 study we had to repeat Joshua’s MRI, and do new baseline bloodworm etc. The study should start next Monday. This drug is supposed to replace the inhibitor he is missing and to slow/stop cell regeneration.

The new MRI wasn’t as good as hoped, but better than expected. Odd I know. But with the increase in symptoms, I was sure the Avastin was hiding a lot more than suggested to us to expect in this MRI. But more tumor, more perfusion into the center brain from the original tumor bed, more growth at the ventricles and a new spot in the cerebellum.