Mar 21

Today was Joshua’s Memorial Service.  We will have a full video of the service in the next few days for everyone to see, but just a few photos of the arrangements up front for now.

From All The Grandparents
The main display
Finished display

Mar 16 – Memorial Service

Joshua’s Memorial Service will be held Tuesday March 21st at 2.30pm. A small reception will follow at the venue.

Horan & McConaty Chapel
1091 S. Colorado Boulevard
Denver, CO 80246

In lieu of flowers, we will be taking donations to add to the remaining funds from his Go Fund Me and donating them directly to GBM research (most likely the Morgan Adams Foundation.)

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 11

Another night of playing count the lack of breaths.

Joshua’s heart is still going great guns, even though other parts of him are shutting down.

One of the hospice volunteers performs reiki and asked if we’d like him to work with Joshua – I figure a little bit of balancing energy might be helpful in the room .

Mar 9

We made the big decision to move Joshua to the Hospice ICC unit in Lowry.

He’s become increasingly confused, he’s very weak and Tony and I felt it was better to take the help so Joshua is comfortable these last few days.

Will we be any less stressed, no, but we might be a little less distressed about not being able to easily help him at home due to our inexperience.

Carolyn’s at home for the moment as we get him settled.


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.