Jan 29

Been an ‘at home’ weekend this weekend. Joshua has a case of the pukes.

It’s strange to think “I hope its a tummy bug” vs the usual ” Oh god, I REALLY hope this isn’t the bug going around”.

Tattoo’s aren’t healed up yet, but here’s what Tony and mine looked like just finished

Jan 16 2017

A new year. A new set of circumstances. New plans.

Not the greatest of plans, but plans none the less.

 

1.9.17 was our most recent MRI and news wasn’t good. While the primary and secondary sites that have received radiation are holding fairly steady, the tertiary ventricle tumors have grown quite considerably.

 

This means the carboplatin / etoposide combo didn’t do a thing over the last two months.

This made the decision on going in to the CDK4/6 trial opening on Jan 30th at Children’s Hospital Colorado very easy to make.  With the Foundation One genetic testing in hand, we know that Joshua is missing the CDK4/6 inhibitor in his tumor so it makes most sense to attempt this trial over any others.

But this medication, Abemaciclib, is purely in Phase study stage – and in pediatrics, this is Phase 1, so purely being processed for toxicity in children (Adult toxicity has been gauged). The best we can hope for is to see lack of change – which will be enough for us. No change would mean we have a window where a new treatment might come available that might prove better at reversing the tumors.

Based on all the new information, we spoke with Denver Hospice on Friday to start setting up with them for what seems to be the inevitable sometime in the next 3-12mths. While its hard to see why when Joshua seems so ‘robust’ currently, we are seeing the small things – like short term memory – change, along with his ability to be able to certain things because his head ‘feels weird’. But we want him to get to know the service, and the people who will be around the house before it becomes too confusing for him. I can’t imagine anything worse than waking up one day to a room full of strangers standing around you.

Life, yet again, changes.

Jan 4

Well,  Jan 4 became Jan5 and somewhere in the middle there was supposed to be some sleep.

But an out of the blue, Grand Mal seizure put paid to that.

We fought hard for Joshua to be off the anti seizure medication, Keppra. He got a classic case of KepRage when on the medication, and since we’d seen no sign of any seizure activity (quite astonishing in it self for such a major right temporal tumor location) he’s been off it for nearly a year.

I have to say it scared the crap out of us all, but it’s become the evening we have to laugh about.

First all the plugs in the kitchen decided to stop. Just out of the blue. Okay, not a worry, we’ll call our friendly electrician to pop round on the weekend – meantime, relocate that Keurig please! Momma needs her coffee!

So off to bed we go (all the rest of the kitchen worked, just not the plugs for the jug etc) after dinner, then just as we’re all nodding off I hear Joshua. Since it was day one of the second set of Carboplatin/Etoposide I thought he was vomiting. Turns out I was wrong.

Once the lights went on it was obvious he was in the middle of a Grand Mal siezure. Tony ran for his phone (as did Tania) but on the way back down the hall melted down the doorway and hit the floor with a pretty massive thump. We still can’t figure out if it was the getting up to fast, the shock or what, but TIIIMMBBBEEERR! And down he went.

I’d been trying to hold the covers so Joshua wouldn’t fall off the bed (without ‘holding him’), and have to rush to pick up the phone and carry on with 911 while Tania picked Tony up. What felt about a minute later (The firehouse is about 2mins away), the paramedics turned up.

I of course am still trying to deal with the situation in my knickers and a more off than on shirt…. Ah yeah. Great.

Did I mention, Coldest night of the year, snow storm and 0*f out.. (about -18 for those in celcius).

Theres more to the story, but that involves a bathroom – I’m pretty sure you don’t want to go there 🙂

So I get a ride in the truck to the ER (& thats a whole other story, I’m still not sure why we were there so long, the ER was almost empty), and Tania gets a crash course in driving in a snow storm as she drives Tony in to the ER behind us.

Xrays (back pain after the siezure), fluids, anti-siezure meds and finally at 5.30 we get to go home… only to have to turn around for an 8.30am appointment at the Highlands Ranch Hospital for his regular scheduled Chemo.

So somehow Wednesday became Thursday… or we might still be Wednesday? I’m not quite sure! LOL

And so yeah, we have to laugh about things sometimes so here’s a video of Aunty Tania in the ER waiting room…

Aunty Tania Snoring Away