I have been trying to update our family and friends on Lisa's progress and have been using facebook to do so. Here a few of the updates I sent out to family.
2-19-16
Latest update on Lisa.
Her brain tumor has been growing rapidly and hasn't been slowing down despite
chemotherapy and radiation. Her doctors gathered together Wednesday to discuss
her case as a tumor board at Huntsman Cancer Center in Salt Lake City. I spoke
with her radiologist and oncologist on the phone last night, and given how
advanced and how aggressive her tumor is we have unanimously decided to
discontinue her treatment and to pursue home hospice care. At this point it is
the most humane approach for her. To be honest, this decision was quite the
relief for me and has brought both Lisa and myself much peace. It still is
heartbreaking and tear jerking, but comforting to know that we won't be putting
her through needless suffering and misery.
To
explain the rationale behind our decision, we discussed Lisa's quality of life.
Currently she has no short term memory. She can't remember things from 30
seconds ago at times. Her long term memory is beginning to fade. She is unaware
of what day it is or what time it is most moments throughout the day. She is
struggling physically. She needs someone to help her balance when she is
walking around. I have to dress her and bathe her. She struggles badly to
follow simple instructions as her brain can't relay the signal to her body.
Her
doctors all agree at this point that it is very unlikely that she will ever
fully regain her memory or physical capabilities even if she responded really
well to radiation. Also, even if radiation is successful, she will still die
within a matter of months. That knowledge causes me to ask why we would put her
through the hell of radiation just to prolong her life by a few more months
merely to keep her alive at her currently lousy quality of life.
Also,
most brain tumor patients don't undergo three rounds of radiation. The
successful cases of people who underwent the Rambo trial that she was on were
with individuals who had much smaller tumors and were typically receiving their
second round of radiation. Lisa really struggled to finish her second round of
radiation a year ago. It was really brutal on her. It would undoubtedly be
worse this go around considering that her tumor is much bigger and she isn't as
healthy as she was a year ago. The treatments this time around were already
beginning to bother Lisa. In her moments of clarity she was beginning to
complain about them and dreaded her daily visits.
Her doctors anticipate that she will pass away anywhere from 3 weeks to 3 months from now. Most likely sooner rather than later. The good news is that she won't be in pain. Home hospice care will help her be comfortable and we will get to be with her.
Her doctors anticipate that she will pass away anywhere from 3 weeks to 3 months from now. Most likely sooner rather than later. The good news is that she won't be in pain. Home hospice care will help her be comfortable and we will get to be with her.
I
can say that we have positively felt the strength and peace that comes from the
Spirit of the Lord thanks to all of your prayers. I rejoice in our belief that
Lisa and I will be together again after death thanks to the atonement of our
savior Jesus Christ. I have decided that instead of having an attitude of 'why
me' or a feeling of being robbed of many years with my wife, I would instead be
grateful for the wonderful time we have had. We truly have had an amazing 14
years since we first met in 2002 in Chicago. So I will hold my head high
knowing that Lisa has lived life to the fullest and we will relish these last
weeks we have together.
2-29-16
Feeling like super dad
today. I accomplished a ton, all with Lisa in tow. I ran down to Salt Lake to make a purchase at Scheels and washed
my truck. Then at Lisa's request I took her shopping (browsing) at Maurices,
and took her to lunch at Taco Bell (of course). I then took a trip down memory
lane with her as I drove us by our apartment where we lived when were first
married and took her to the Cougar Creamery for an ice cream cone. After school
got out I took the boys to get their hair cut, took Aubrey to her pediatrician appointment
and then after dinner took all the kids to the outlets to get them new shoes.
And I managed to squeeze in a workout. As I was just talking to Lisa recapping
today's events, she unfortunately couldn't remember any of it. She did however
say that even though she can't remember it, she's certain the Taco Bell tasted
awesome. Win!
3-3-16
Latest Lisa update.
Physically her deterioration has plateaued and she hasn't gotten much worse
over the past week. Mentally though she continues to struggle more each day.
Most of the time she thinks she's fine and has a few years left to live. She
thinks her doctors gave her a clean bill of health. As a result she thinks she
is still capable of performing every day tasks (which she can't) and wants to
be very independent. That tends to create big problems. She gets bored easily watching TV because she
forgets what she is even watching after a few minutes and then will wander the
house. She tends to throw things in the trash like the kids homework, bills,
mail, even an ipod. She moves perishable foods from the fridge to the pantry,
dishwasher and cabinets. It's exhausting following her around all the time
keeping her out of trouble.
Last night at 8:00 she wanted to change into her pajamas and insisted on doing it herself (she has needed help with this for a few weeks now). I was busy with something and told her I would come upstairs in a few minutes to help her. She didn't want to wait and headed up anyway. Not two minutes later I hear the two little boys screaming down at me, "Dad! Mom's trying to change in our room!" I immediately ran upstairs to find her part way through getting undressed. All the commotion frightened her and she said, "Fine! I'll wait to get my pajamas on." I then led her back to our bedroom to change. She doesn't realize what's going on and gets angry when we try to help her.
She still does have funny moments though. This morning when I was giving her all of her morning medications she said, "Wow! You are really good at this! How did you get so good at arranging all those tiny pills?" She even busted out some sayings from Lord of the Rings that blew me away. She was never a big fan of it so I was shocked to hear her last night at 9:30 telling me she was hungry again and asked me if she could have 2nd dinner. She then proceeded to talk like a hobbit about 1st and 2nd breakfast, etc. She also still tries to smile as much as she can. Even when you can tell she is very confused and unsure of what's going on, she's still smiling.
Last night at 8:00 she wanted to change into her pajamas and insisted on doing it herself (she has needed help with this for a few weeks now). I was busy with something and told her I would come upstairs in a few minutes to help her. She didn't want to wait and headed up anyway. Not two minutes later I hear the two little boys screaming down at me, "Dad! Mom's trying to change in our room!" I immediately ran upstairs to find her part way through getting undressed. All the commotion frightened her and she said, "Fine! I'll wait to get my pajamas on." I then led her back to our bedroom to change. She doesn't realize what's going on and gets angry when we try to help her.
She still does have funny moments though. This morning when I was giving her all of her morning medications she said, "Wow! You are really good at this! How did you get so good at arranging all those tiny pills?" She even busted out some sayings from Lord of the Rings that blew me away. She was never a big fan of it so I was shocked to hear her last night at 9:30 telling me she was hungry again and asked me if she could have 2nd dinner. She then proceeded to talk like a hobbit about 1st and 2nd breakfast, etc. She also still tries to smile as much as she can. Even when you can tell she is very confused and unsure of what's going on, she's still smiling.
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