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.
Joshua is finally weaned off the Keppra (so he’s no longer on the 2000/mg a day PLUS the Versed) and the steroid is finished, so he’s much more alert than he has been for the last half of the week. He was pretty much a bit of a zombie there for a bit. The last two days he’s had a few hours awake each time he’s been up which has been lovely!
We got some photos with the Grands before the day was out:
Then the Lambrecht’s bought us over dinner – along with heart shaped cornbread. Cornbread is Joshua’s FAV!
Joshua had some visitors today!
And a 4 legged visitor. Van Gogh has a tail like a whip, is a happy happy dog who loves to play chase his ball… and has quite and interest in meeting cats! (MaoMao, how ever didn’t join him in his endeavor to be friendly!)
And topped the day off feeling really good, and had dinner out. He didn’t eat much, until he got to dessert… of course!
Na’s arrived from NZ last Sunday. Granddad and Nana arrived today then Poppop arrives tomorrow. They’re going to spend some time helping out.
We have to give a shout out to the Lambrecht’s over the road. They’ve opened their house up to room some of the Grands so the house isn’t too crazy.
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.
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.
Josh had a whole lot of LURVE thrown at him today from Daisy, Brownie and Scout Troops from down Jacksonville Fl way!
Thank you all!!!
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.