[stanford_status] Jan 23, Tue - 2 AM observations

[John R Larsen]

Hello Everyone,

It's past 2:00 AM here.  I brought a cot into Stanford's room so I 
can be close by when he needs something.  Up until now he has been 
able to "page" me using the intercom function of our wireless 
phones.  We're worried that he wouldn't be able to do that now so 
I'm in here so he won't get distressed during the night.  I haven't 
been able to sleep at all yet.  Every time I start to drowse off he 
needs something.

He uses a portable urinal now in bed in order to save his strength.  
Getting out of bed takes a lot out of him.  Getting back in takes 
even more.  Sunday afternoon he sank to the floor while I was 
helping him get off the toilet.  I held him up and loudly called for 
help.  It took me and Bradford together to lift him back up to his 
feet and then I supported him while he walked back to bed.  I'm 
worried that I won't have the strength to lift him if he falls.  He 
has hardly eaten any solid food in two days.  This is agonizing to 
watch.

It seems in the last two or three days that Stanford has gone 
through another change.  He often says to me and Joyce, "I'm 
confused."  When we ask him what he is confused about he can't 
really state a reason.  He is in and out so much that it's hard to 
carry on any conversation of any length.  His eyes are always 
halfway closed and are sunken deep into his face.  A few minutes ago 
he asked me to read more of "Eldest" to him.  We have about 25% of 
that book to go.  I read a few paragraphs and he was gone again so I 
sadly put the book aside.  I'm afraid that we won't get to finish 
that book together.

Joyce and I gathered our children into the living room Monday 
evening for a family council and had a very direct discussion about 
Stanford's condition.  We explained what we had seen during the CT 
scan and that most likely Stanford would be dying soon.  Julia burst 
into tears and sat on my lap for a long time.  Our Bishop was there 
with us and we discussed life and the meaning of life and why we are 
here on earth, and many other things.  We then said a prayer 
together.  This whole experience with Stanford is by far the hardest 
thing we have had to do in our lives, and it isn't done yet.

My thoughts on what is happening now is that the tumors have finally 
overwhelmed Stanford's remaining good liver tissue allowing the 
ammonia level to greatly increase.  Also the albumin has dropped 
even more and that is allowing the swelling to increase at a greater 
rate.  

His legs are huge, so huge that they can't be crossed anymore.  That 
makes it very difficult to get him into bed.  To adjust him I have 
to stand over him with one foot on the bed and one on the floor.  I 
then put my hands underneath his butt bones and lift him up.  I'm 
trying to be very careful with my positioning because I had a 
herniated disk back in 1999 that took several years to recover from.  
I don't want that to happen again.

Well, sorry for rambling on like this, but I thought you might be 
interested in how the nights have been going for many days now.  We 
are so thankful for our many friends who have helped and continue to 
support us through these difficult times.  Cherish every day that 
you have.  Tell your loved ones how much you love them and do it 
every day.  Relationships are the most important things you have.  
Time is short.  Let's not waste it.

John

ps.  We haven't heard from Dr. O'Shea yet.  He had mentioned earlier 
that he wanted to consult with his collegues.  I'm assuming he 
needed to send a copy of the CT scans to them.  I'm guessing that 
we'll hear from him today (Jan 23rd) and that he will say the 
gemcitabine hasn't been doing any good and chemo needs to stop 
because it is causing more harm than benefit.  We'll see.

_______________________________________________________
John R Larsen <john at larsen-family.us>
http://larsen-family.us