For some reason, this is the 4th time I am writing this. I don't write down and then transfer what I am going to say, I simply write and edit here and there when I'm done. I've written this post 3 times in its entirety and gone to upload the picture, and then loose everything I've written... So... Here it is again. Lol.
The past couple of days have gone by seamlessly for the most part. Dad
was put back on the higher steroid dose and the Keppra to help reduce
the swelling and ward off the possibility of seizures. Because of this,
he has been on "go" during the day. Wanting to run errands and calling
everyone he can think of simply to talk with no end in sight. With this
comes increased impulsivity and a slight stubbornness.
Yesterday was Katherine's last day in Memphis before going on a long
planned trip with her close friends and their spouses/significant
others. Dad took full advantage of this and had her run him around the
city all day. By the time I came over in the early evening, they were
both tired and just hanging around. I know the decision to follow
through with her plans must have been a difficult one to make, but the
timing, honestly, couldn't have been more perfect. Dad is doing well, he
has a constant flow of friends, it's before dad starts his standard of
care (SOC) of chemo/radiation, and it's before the semester starts.
Katherine deserves this time to relax and enjoy herself, and she knows
that dad will answer anytime she calls, and that we will be here for him
while she is gone. God's timing is always perfect.
Diego came by this evening and brought food and his cello. Unbeknownst
to him, dad had invited a houseful of people to hear him play. Uday and
his family, David, John, Mariam, Mable, and of course we were all there
to enjoy Bach's 4th Cello Suite. Adelyn even loved listening, and
dancing while he played, clapping between movements.
It's so comforting to know that dad's friends aren't the type to
disappear in difficult times. They have swarmed him and showered him
with love and understanding. We are so grateful for this outpouring of
support in this time and knowing it will help hold us over for when dad
begins his SOC and will be more susceptible to infections in large
groups of people (and grandchildren).
Mom took dad to pick Mia up from school today. This is a wonderful thing
that allows for a sense of normalcy. Before dad was diagnosed, he would
pick Mia up from school, on days that he was able, and they would go
get ice cream and read the funnies together. Today, mom dropped them off
at Baskin Robbins, and let them have their quality alone time. Mia
loves her Opa and has expressed that it's not fair that this is
happening to him. When we told her about his diagnosis, we cried
together and let the overwhelming sadness and gravity of the situation
pour over us. She asked why God would let this happen. I told her that,
at that moment, I was so angry with God for letting this happen to him,
and that even though I know he has a plan, it just didn't align with
what I thought I wanted it to be. That's where I was at that time, and
it was ok if she was too. Time would pass and God would show us the
Speaking of plans...When dad went to the West Clinic the other day, the
genome of the tumor wasn't ready. We want there to be some sort of
target mutation that will suggest the tumor will be responsive to the
SOC. Our goal is to halt the growth or reduce the size of the tumor so
that dad will be able to live a long time, and with a good quality of
life. We don't have the option of removing dad's tumor.
I sent dad's MRIs to two different Brain Cancer Centers, with the best
surgical teams for this cancer, and both called me and confirmed that
Dr. Sorensen did a wonderful subtotal resection, and that there is
nothing more that can be done surgically.
Armed with that knowledge, I am now slightly changing my direction while
searching for clinical trials. I really like the immunotherapy trials.
It may be because i understand the concept the best, but they really do
make sense! Part of the beast of this cancer is that dad's own body
essentially protects it from treatment. The natural blood brain barrier
makes treating it with medication (even chemotherapy) very difficult.
These immunotherapy trials focus on (very simplistic explanation)
training dad's body to identify and attack the tumor in his brain. This
idea seems like a common sense one that a really really smart person
decided to develop and implement.
There are other trials out there that use different medications, but I'm
not educated enough in this field to fully understand the techniques
and how they anticipate it helping long term. That's not to say one of
those trials isn't THE trial, I just don't understand them as well.
Nonetheless, I have them printed out, and will move forward with
contacting their trial teams and see if a person can better explain it
to me. To me, it seems like it would be much more risky to attempt to
get a drug to pass the blood brain barrier and ensure it is strong
enough to halt or kill the tumor, and not harm good brain tissue at the
same time. I'm willing to learn though...
I wish I could upload the video of Diego playing, but a picture collage
will have to do. Thank you again for your continued prayers and support.
Our family, and dad, greatly appreciate it.
There are two new entries, a quite a few great pictures on Karen's blog here: http://www.karenpulferfocht.com/blog/drbobsbrain