Decisions

He decides to stop the chemo. We all support this decision. Being that he is unmethylated it doesn't seem that the effects of the chemo are worth it.

Talk with Dr. Clark and decide to push up the next MRI scan. Schedule it for Oct 11th.

Dad is starting to get a little back to normal which is nice....

Another seizure?

Dad has been miserable for the past couple of weeks. I dont think his body can handle the chemo. Also seems like he gets very stressed out about being sick. We think he had another seizure today. Same symptoms. Mom took him to the hospital. They gave him the usual fluids but didn't admit him, which is probably a good thing.

Starting to talk about not doing any more chemo. He had said he wanted to do at least two rounds but not sure he can handle it......

Sickness hits hard

Well, so much for feeling good. Seems like after taking the five days of the high dose chemo it has finally hit him. He is miserable. Hate this!

Feeling good during chemo week

Dad is three days in to his five days of chemo. To all of our surprise he is feeling really well. Hope it stays this way.

Dad starts 5 day Chemo

Dad got back from Mikeys wedding and took the chemo tonight. He did good on his trip to the wedding. Nausea and fatigue but nothing major. Decided to start chemo as soon as he got home. So far no side effects.

MRI review at UCSF

Meet with Dr. Clark to review scan images. She thinks they look good. She does not seem concerned about small area around tumor. She says we should do the 5/23 plan of chemo and should start immediately after Dad gets back from wedding.

Feeling good.

Dad MRI at St. Helena Hospital

Dads routine MRI is today. Slightly anxious but since he just had one a few weeks ago because of the seizure I'm not that worried.

Later in the day mom calls and says that Dr. Smith says the MRI looks ok. Something small in the tumor area is lighting up but who knows what it is. Abnormal area where seizure was looks normal now. Creates some anxiety amongst us. Will have to wait until next week when we meet with Dr. Clark.

Call with Dr. Clark

So, last night Dr. Clark called me. She said that she showed my dads scan at the Thursday morning tumor board meeting and they all thought that the abnormal area on the scan looks like it was minor damage from a series of small seizures. This seems to make sense and if it is true everything should heal and go back to normal soon. Dad is already doing a little better.

She is going to call St. Helena and up his dosage of Keppra.

Feels good to get some answers.

Still in hospital. More tests.

EEG test. Blood work. Spinal to check for infection. So far everything negative.

Talk to Dr. Clark at UCSF. Overnight her the MRI.

Still awaiting some test results but so far nothing major showing up.

Thinking its just bad inflammation that might be causing this. Clark says could take a few weeks to clear up.

Dad still in the hospital tonight.

Admitted to St Helena Hospital

Bad morning. Dad didnt sleep all night. Severely agitated. Yelling about how he wishes he was dead. Banging fists. Just all around bad. Now believe this is steroid psychosis. He doesnt do well on those steroids. By afternoon is hallucinating and hearing things.

Dr Tate sees him at St Helena. IV fluids, sedatives, finally admitted to the hospital. Later MRI.

MRI shows no tumor.
Inflammation.
Possible infection.

Dad still not feeling well. Still confused.

8 mg Dex

Dad takes 8 mg Dex today. Feels terrible all day.

Confusion

Dad feeling ok for most of the day. Called tonight expecting everything to be fine and mom tells me he is very confused not making sense. She calls Dr. Smith urgent number. He prescribes dex for swelling. Tells her to pick it up tomorrow.

Not good.

Last Day of Radiation

Dad finished 42 chemo pills yesterday and today was his last radiation treatment. What an accomplishment. He felt terrible this morning going for treatment. Kind of freaked all the nurses out because they are used to him looking so good. Received radiation then got bloodwork and an IV done with fluids and an anti nausea medication. He started feeling better about halfway through the appointment. Decided he wanted to go out for pizza and a beer tonight with all of us.

Was still sick a lot of the day. So hard.

Dinner was great. Good to see him out of the house. We all loved his company.

Now we wait for the MRI scheduled for August 11th.

Cocktail so far

Zofran
Temodar

Psk mushrooms
Longvida Curricumin
Vitamin D3
Reversetrol
Melatonin

Cannabis extract THC and CBD

Start Radiation and Temodar

Today is my dads 62nd birthday. Today is also the day he starts radiation and chemo.

Took temodar early this morning then went for radiation. Started feeling sick at the doctors office. Got home and was very sick, throwing up. Not sure why he wasnt given an anti nausea medication ahead of time.

Dad didnt feel well all day. My mom had the doctor prescribe him an anti nausea medicine. They prescribed 3 different ones. Dad napped and started feeling better around late afternoon.

Dad confused about the three different anti nausea medications. I figured out that he should only take the Zofran and take it 1 hour before taking the temodar.

Not getting much help from the doctors.

Plan tomorrow to take Zofran at 5 am. Temodar at 6 am. Supplements and breakfast at 7am.

Hope for a better day.

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.

Full Body Scan

Thankfully UCSF was able to schedule my dad for the body scan at UCSF Mount Zion. He completes the scan by mid morning and awaits the results. By mid afternoon we hear from the nurse that the preliminary reads of the scan show no tumors BUT a radiologist still needs to see a full report to be completely sure. Feel some sense of relief. By evening we have a confirmation of a clean scan. Thank you God! Begin scheduling for brain surgery.

UCSF Consultation

After waiting for what seems like forever my Dad finally met with a neurosurgeon at UCSF. Dr. Theodosopoulos's evaluation of the scan is that it is a malignant brain tumor. He wants to remove the tumor next Wednesday provided his full body pet scan shows no additional tumors. If the scan is clean he will schedule him for an awake crainiotomy next Wednesday morning followed by radiation and oral chemotherapy.

Dads pet scan is scheduled for this afternoon at 1:30 at St. Helena Hospital. At noon they are told the machine broke and can't do the scan.  Now furiously trying to find another place to get the scan done.

Books appointment at UCSF

My Dad called UCSF this morning and then got a call back a few hours later. They gave him an appointment for next Tuesday at 9:30 am. Tuesday seems so far away but so thankful to have an actual appointment.

Talk to UCSF

Call UCSF and was able to get him registered. Told that his scans have been given to the doctors assistant but we will have to wait until he is able to look at them. She tells us we will hear by Friday and not to call. Friday feels like an eternity.

Waiting

Waited all day to hear from UCSF. Called, left messages, nothing. Now we have to wait all weekend.

Overnight Scan to UCSF

So upon hearing about my dads diagnosis my parents began gathering information. He was told that he needed to see a neurosurgeon immediately and the best place to go is UCSF.  Finally got connected to someone there and was told that to start the process someone would need to see his MRI results. So they send them overnight to San Francisco hopeful that they will hear from someone tomorrow.

MRI results show brain tumor

Dad called saying his MRI results came back and he didn't have a stroke but he has a brain tumor. We are all in complete shock.

Brain scan diagnosis is stroke

Church, Breakfast, than another bout of confusion. This time saying the wrong words. Olive tree instead of olive oil, paper bags instead of paper work.

Mom takes him to St. Helena hospital. They scan his head. Tell him he had an actual stroke and scan shows some damaged areas in his brain.

Told to change his lifestyle.

Back to work

Dad goes back to work. Has an easy day. Leaves a little early because he is tired. Otherwise all good.

Arteries

Scan done at St. Helena hospital shows that his arteries are completely clean. EKG at cardiologist is also good. Cardiologist says it is not amnesia, more likely a TIA and puts him on a heart monitor for 11 days. Also schedules echo cardiogram for when heart monitor comes off.

Confusion

Called my mom late morning and she answered sounding very upset. She said something was going on with my father and he couldn't say Ethan or Mikey or Shannons names when looking at a photo of them. Said she was leaving to take him to the doctor.

Hung up the phone completely terrified about what was going on. Prayed he was ok and that his memory would come back.

Mom calls from Doctors office. Says his memory is back. My prayers are answered. Says he passed all the tests at the doctors office with flying colors. First told it was likely a TIA (warning stroke). Then after more evaluation was told that it was more likely trans global amnesia. Feel very uncertain about that diagnosis. He is told to see his cardiologist, get an artery scan and an ekg.