Jun 8.2

Joshua had a great time this afternoon! Thank you so much Lt. Rob Rotherham and the rest of the Mounted Patrol team who got Joshua mounted up and out on the trail. The weather shortened the trip a little (we’ve had afternoon hail storms the last few days), but he’s got his first taste, and Joshua is keen to go riding again!

The Mounted Patrol is a semi voluntary group who keep, train and travel with their horses on their own time and dime. Please consider contacting Lt. Rotherham to make a donation.

Joshua Riding Out Video

(The video isn’t embedding for some reason, but if you click the link it will play)

April 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.

April 11

Today was MRI day.

This time, news wasn’t so good. The primary tumor site is returning and there is a secondary site (still small at this point) and potentially a third site we are treating as tumor.

This means more radiation – short and harder this time – and his medical regime will change.

There are some trial options open to us out of state, but first we are going attack this with the radiation, a new chemical regime and adding in the Novocure cap by Optune.  Seems crazy to think some arrays stuck to Joshua’s head might be the most effect option of them all at slowing down cell growth.

It hit home to me today, Joshua’s Mum, that we are managing this thing, not curing it. This Sucks.

Feb 28.2

This one is for Joshua in a way, but about me, Debbie, Joshua’s Mum.

Joshua’s had to spend a long time with very little hair (his racing stripe’s finally starting to grow back in), so as part of the St Baldrick’s Foundation annual Shaving event, I’m going to raise funds for Childhood Cancer Research and on the Sunday we will be spending in NZ celebrating Joshua’s birthday, he’s going to get to shave my hair for a good cause.

If you would like to to donate (even a small amount is appreciated!) to a highly underfunded section of the Cancer Community – CHILDREN’S CANCER – please click this link and donate.

If you are also participating – wherever in the world you might be – Please feel free to add Joshua to your list of honorees! 

Feb 24

Today, Joshua got to spend the day at Ft Carson doing an enormous amount of things… the highlight being the one thing on his bucket list we really didn’t think was going to be able to happen – Riding in a tank.

An Abrams Tank, to be exact.

I’m going to work on the full list of all the things the very generous men and women at Fort Carson escorted Joshua through today – it truly was an amazing and very humbling experience.

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