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 7

Joshua is increasingly more confused and scattered. He’s very weak since he’s not been able to keep food or drink down for weeks. He’s sleeping the day away as we make sure the medications keep up with his pain – ironically, the kid has such a high pain threshold, he’s not taking much in the relative scheme of things.

We are assessing day by day as to when to move him to the hospice facility in Lowry.

Christmas 2016

This Christmas was a good one. The Beckenbach’s joined us from Utah, and the Rice’s from Texas so we had a house full!

Then a special delivery arrived from NZ!

Aunty Tania was between contracts so made a surprise visit!

Aunty Tania playing in the fresh snow

 

 

 

Nov 29

Joshua was given a Joy Jar when at his infusion today. What a great idea for the kids who have to spend so much time sitting, waiting for infusions to run.

This week marks the start of plan F. Carboplatin and Etoposide chemotherapy. It’s been shown to be somewhat effective in the adult population over in CO University Oncology. So, since the ‘easier’ option (Gemcitabine) became the worst option, the harder option it is!

We also had a box of ’emergency’ supplies arrive from NZ – Thank you so much Tracey-Lee! These will be very useful during all the hospital visits.

 

11.11

Somewhere along the way the website got all fubar’d up. I have since borked it entirely in my efforts to fix it. Here’s hoping I can figure out how to get all my posts back!

 

Meanwhile  little note to myself so i can go catch us up:

March/April – NZ make-a-wish trip

April – New MRI – new tumor growth, new radiation

June – horseback riding with the Douglas County Mounted Police

August – tattoo.

September/October – new port replacement, found a blood clot,

October – new MRI new tumor growth and new tumors found

November – new chemo regime