Friday, January 8, 2016

15 and 16 days after surgery

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 greater plan.

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:

No comments:

Post a Comment