Thoughts

Is it worth taking the Temodar even though we know it will have little or no benefit?

Is there anything we can take with the Temodar to make it work better?

I think my Dads best treatment options lie in the world of immunotherapy or vaccines. If so which is the best one? Do we put him in something like that now or wait for a tumor to come back before doing that?

Do we do the Novi trial?

Are there better trials at other hospitals now that he can enter?

Genetic Test Results & Staples Removed

My parents went back to UCSF today. Met with Dr. Clark and I phoned in. Genetic/molecular results show that the tumor is unmethylated. IDH-1 negative. Not good news.

On the positive side Dad got his staples out and looks great. He is doing amazing.

Now its time to figure out a treatment plan.

Pathology Results

Dr. Clark called today with Pathology results. As everyone suspected it is a glioblastoma grade 4. No surprises. Everyone knew, even me. Now we wait for genetic testing.

Dad is doing well. Getting better and stronger everyday. Happy Mikey is there with him.

Going back to Dallas

Dad has been emotional and so have I. He paces back and forth and I see him tearing up a lot. He probably sees me tearing up a lot too. I so dont want to see him sick.

Today I have to go back to Dallas. Dad is healing well. I just dont want to leave. We both hug and cry.

Leaving UCSF

Today my dad was discharged. I can't believe how quickly they let him go home. Before we left we met with Dr. Clark. Was very emotional. She said she thinks its glioblastoma but doesnt know for sure. Dad looks upset. Wish we didn't even meet with her.

Dads bandages are off. His scar is huge. Feel terrible for him.

Go back to St. Helena. Emotional.

Recovering at UCSF

Dad met with the doctor this morning. Everything is looking good. Had some trouble during the night trying to pee but eventually worked itself out. Got transferred out of ICU into a regular room on the 8th floor neuro unit. Has to share a room with a really awful loud young guy who is getting fusions every hour into his IV. His machines are constantly beeping. I spend the afternoon at the hospital. Try to get him switched to a private room. At 3 he goes for his post surgery MRI. Feel terrible he needs to go through that again. He seems fine with it. When he comes back I call Tracy to see if she can switch his room. She appears shortly after. Can't switch his room yet but gives us information about next steps and meeting with Dr. Clark the neuro oncologist. I convince them to stay until 1pm tomorrow to meet with her.

Go downstairs to meet Tyler and the kids and then bring them up to see Dad. When we get up there he is already in his new private room which is great news. Hes happy to see the kids and still in really good spirits. Feels good. Dont want to leave.

Awake Crainiotomy

Today is the day. Awake surgery for my Dad. We get to UCSF at 6:30 am. I have never seen my Dad like this. Wait to get admitted then up to the pre-op. He lays on the bed and we meet all the people who will be in the operating room. I finally meet Dr. Theo and ask him some questions. He says the tumor is in a difficult area and surgery will be very dicey. Also says it is very aggressive and usually comes back. Everything he says seems to upset all of us. I see tears come out of my Dads eyes. Want to break down. Need to stay strong for him. Feel terrible for even asking the questions.

At 8:30 they roll him in. See Dr. Theo. Mom and I go downstairs. We don't even know what to do. We walk around and then go pray in the meditation room. Then go to the cafeteria. Around 9:45 we get a phone call from Mitchell saying that they had begun the surgery and everything was going well. We were told we would get updates about every hour and a half. Wait for next one. Next one comes in right on time from Mitchell saying that they are resecting the tumor and that everything is going well. Wait for the next one. Get very anxious when we dont get it. Then mom realizes that she had the time wrong. Realize we still have 15 more minutes before we should expect the call. Clock hits that time and still no call. Tyler calls my phone and while Im talking to him Moms phone rings. I tell Tyler I need to go. Mom has phone on speaker and instead of hearing Mitchells voice for the update I hear a girls voice. She asks where we are and if we can come out in the hallway to talk to the doctor. Both of our hearts sink to the floor. We think something went wrong and we run into the hallway and see the doctor. He says that they are done and that he got all of it out. We completely numb. Continue to talk with him and find out that it is an aggressive tumor but that my Dad was awesome in surgery and helped a lot with being able to get it all out. Doctor says could be glioblastoma but even then there are lots of variables with the molecular makeup of the cells. Says prognosis could be 1 year, could be ten. Said if he had to guess he would say its on the further end. I hug him.

About 45 minutes later I get to see my dad on the 11th floor Neuro ICU. Very intense. Dad looks amazing, is talking, and seems actually happy. It is so nice to see him happy. He is talking a lot and telling everyone about the surgery. Its all really crazy. I can't believe my Dad just went through a 4 hour awake brain surgery. He saw his own brain and the tumor. He is so strong. I love him so much and don't want to see him like this.

Pre Surgery Tests

Went to UCSF with my Dad today. He had his bloodwork taken. Then meeting with Dr. Perry the speech mapper. Then a really difficult MRI. He looks worn out. I feel terrible for him. Has elcromagnetic disks glued to his head. Says he can't go out to dinner tonight. Needs to keep them on for tomorrows surgery. I can see how worried he is.

Got to St. Helena today

Me, Ethan and Valentina got to California this morning. Saw my dad. Very emotional.

Tomorrow we head to San Francisco for pre-op testing.