Nothing New From the Doctor

I was hoping to post last night after the doctor called us, but he didn't call until after 8:45 and as my kids know - my brain does not function after 9:00pm, so I waited until this morning to give you an update.

Dr. Jensen reported that the Jedi Council had met (surgical/oncology team) and that the cancer is definitely a level 4 glioblastoma primary cancer.  The next definite step will be radiation and chemotherapy.  The oncologist's office will call me either today or tomorrow to set up an appointment to meet the oncologist and his team for early next week.  Depending on David's strength and recovery from the surgery, they may start radiation as early as the end of next week - the doctor said it was important to get started as soon as possible, but recovery from surgery may delay that.  I asked him what the long term prognosis was and he said we would talk about that at our appointment next week.  He told me that they would do an MRI every 2 months to follow the effectiveness of the radiation and how the tumor was responding.  He also told me that they would be able to try some different chemotherapy treatments if the tumor was not responding well.  Dr. Jensen was very pleased with the surgery, but emphasized the need to get him into radiation as soon as he was able.

An update on David:  after cutting his steroid dose in half, all he wants to do now is sleep and the doctor told me that was normal but we were to watch for severe headaches and to make sure we could get him to totally wake up.  That has not been a problem.  Abbie took him on a walk again yesterday, but he was extremely tired after that.  He slept almost all of the night last night - which he hasn't done since before surgery!!  He is concerned about work - as usual - and what needs to be done at the JCC and he's anxious to get the garden planted at home.  We'll work on that one this weekend - I can't wait!  But he continues to regain his balance and his speech little by little.  David will begin physical and occupational therapy in 2 weeks which I think will really help him - and somebody else can be the bad guy instead of us!!!!

Again, I thank you all for your prayers, good wishes, kind thoughts, emails, phone calls, food and everything you have done for us.  One of our nephews, Ryan Smith, sent us a large container of meat and food from Omaha Steaks!!  Oh my goodness!!  What a treat, Ryan!!  You truly know what's important to a man!!  David has thoroughly enjoyed every bite - as have we!!  We love you all and feel your support and love.  We will keep posting as things go along.

Love,
Janis

For all you blog junkies.....

The Boys

You can quit texting me for updates now....  :)  I actually don't mind the texts and apologize for not getting an update done yesterday.  I know you're all used to getting two to three a day.  As dad sleeps soundly, I thought I'd try to post.  Yesterday was a long day and when I tried last night to get an update done, I was too tired to write much.

We've settled into a routine as we begin day 2 of dad being home.  His pain seems very mild and very controlled and he continues on an assortment of other meds; steroids, anti-seizures, etc.  He's been on a large, heavy dosage of steroids since the surgery to keep down the swelling and inflammation down.  The steroids have kept him awake and slightly on edge.  Today, we begin cutting the dosage in half.  We've already seen the results as he is still very asleep.  We anticipate him sleeping more and more as he comes off the steroids.  Once his strength begins to build back up, he will start staying awake longer.

Abbie took dad on a walk around the block yesterday.  Though he is still slow, his balance is getting better.  He doesn't seem to be favoring his right side so much and is continually more stable as he walks.  I believe we've gone a full 24 hours since his last fall.  That is very good news. 

Mike is here this morning to install some hand rails in the shower to make things a bit safer for dad.  He was able to wash his head yesterday and clean up his wound and ear.  It's looking really good!  The staples will come out next Monday.

We anticipate a call tonight from the Jedi Council (or the Huntsman Cancer Institute team) with a treatment plan for further elimination of the Deathstar.  We expect this to contain Chemotherapy and Radiation treatments beginning in the next few weeks. 

We have had a few visitors, which have been fun.  Tracy Gunn (neighbor from the ward) and her son Logan stopped by last night and gave some of their families favorite John Wayne movies.  Dad is sure excited to watch them.  Also, a big thank you to Ryan Smith and family.  Dad is sure excited to eat steaks tonight!! 

We will post again this evening when we know more about the treatment plan.

Have a great day!

Home Sweet Home

This morning Dad received his discharge orders, and he's now here at home resting.

Yesterday evening Dr. Jensen stopped by to check in on Dad.  Dad's been waiting for this visit from the moment he left surgery.  Dr. Jensen let Dad know how pleased he was with the surgery, and how great his incision looks.  He also asked Dad if he remembered anything from surgery.  Dad mostly remembers feeling pain and hearing the vacuum.  The Doctor told us that there were some veins toward the bottom part of his brain that when they would start bleeding the Doctor would cauterize them and each time he did Dad would say, "Ouch."  The doctor thought it was sort of humorous.  Dad of course doesn't.

Dr. Jensen also was able to take a look at the after surgery MRI Dad had done on Saturday morning.  The Doc said everything looked really great.  That he was able to remove 95% of the tumor.  The other 5% was in a place he didn't want to touch, and he knew that going into surgery.  So we'll be relying on radiation and chemo therapy to keep that 5% in check for as long as we can.  Mom and Dad will hear from Dr. Jensen Wednesday night regarding the next steps in treatment.

Dad will also be participating in physical and occupational therapy.  His balance is something he will really be working on.  He's pretty tired and weak, so we are trying to keep him rested.  He'd love visitors if any of you are thinking about stopping by.  We'd love to see you between the hours of 6 and 8 pm.

I find it really amazing that 72 hours after brain surgery Dad is able to come home.  This whole thing is a miracle!

The Duke, Westerns, War movies & my Dad



John Wayne (No pictures of Dad because I'm in the middle of rescuing all my files from my now defunct laptop)

This post has nothing to do with my Dad's condition, but I like to keep him updated on what I'm doing since I can't be there until Spring Break next week.  Today I was able to talk with him for more than a sentence or two (which was great) during which he informed me that I'd have to help him get around next week (I think he may have just done all the balance stuff Abbie talked about in the previous post).  

Last night and today I've made some interesting movie choices and realized they have to do with my Dad.  My Dad likes to watch John Wayne movies, westerns, and war movies.  Growing up, I did not like these movies, but if I wanted to watch TV when those movies were on - it's what I was stuck with.  Even now Dad turns the channels until he can find a movie that fits into one of his favorite categories. 

Last night I watched Flying Tigers with John Wayne (which I don't recall seeing before, but I'm sure I have)  and right now I'm watching Donovan's Reef and The Alamo is up next.

When I first started teaching US History and was looking for a WWII movie to show my students that wasn't Pearl Harbor, I remembered having to watch war movies on TV on July 4th or Memorial Day with Dad- especially Midway.  Every year I've taught US History, my students have to watch Midway.  Today I pulled out Midway and watched it again. 

I've definitely gained an appreciation of The Duke, Westerns & War Movies because of my Dad (& I'll bring some to watch next week Dad!)

Love,

Melody

Visitors

Mom and I came up to Dad's room this morning to relieve Amy from her night shift.  Dad slept much better last night, thank goodness.  Today Dad has continued to sleep.  Which we are grateful for.  I used to get pretty annoyed when I could hear my Dad snoring but today it was comforting and I didn't mind a bit. 

We've had a few extra vistors as well.  Two doctors from the neurosurgeon team stopped by to check on Dad's progress.  One was in the surgery and said everything went really smoothly.  They took the banadges off the incision.  It's pretty gnarly.  I wanted to post pictures, but Mom and Amy thought they might be too traumatic to some.  Perhaps when they clean up his head a bit more, it won't look so bad and we can post a picture.  The doctors feel he is doing really well and are quite pleased with his progress.

Another nurse/doctor (not sure which), came in to start some balance work with him.  She made him practice standing with his feet together with his eyes open for 30 seconds and then closed for 30 seconds.  He also has to practice doing this with one foot in front of the other and then practice lifting one foot up at a time.  The biggest task is to do this on a pillow while counting backwards from 100 by 7's.  This helps him to get the reaction time of his balancing reflex quicker.  Dad does this in a corner in case he needs to lean on something.  We'll be working on these exercises a couple times a day.

He's required to use a cane to walk.  And asked if there were some defensive cane movements he could practice.  I laughed pretty hard, to which he responded, "I wouldn't laugh too hard, you'll probably get hit the most from it."  Got to love Dad's humor.  We then spent a few moments talking about how to pad the cane so it wouldn't hurt too bad.  I took Dad on a few laps around the floor and kept saying, "Dad use your cane.  I'm not tough enough to keep you from falling."  or "Dad, the cane goes out in front, not to the side.  Stop dragging it."  He was pretty annoyed, so I might need to add a little bit of padding to it.

Dad has also had some family visitors today too.  Uncle Matt, Aunt Jane,  and Megan (his niece) all came up.  We're awaiting the arrival of grandsons, sons and daughter in-laws.  He's excited to see them all.  And all of you too.  He's looked out the window a few times to check on the J.  He asks all the time if there are new comments on the blog we can read to him.  He gains a lot of strength from all of you, and so do we as his family.  Thank you for all you do!

OuR wOnDerFuL gRaNDpa dAviD!

Celebrating all the good news

Dad & Me

I celebrated all the great news about my Dad's surgery in only a way he could appreciate - I super cleaned my bathroom.  The dreaded Saturday job for me growing up was cleaning the bathroom - why?  It was the job that if you didn't do it right you'd have to do it over & over & over until it passed Dad standards.  So Dad - my bathroom is clean - even under the toilet!

Love you!

Mel

A Miracle

Good morning to all of our friends and family!! I am sitting here alone watching David while he peacefully sleeps and thought I would give you all an update. From the time they brought David into ICU at 3:00pm and the time I left to go home, about 6:30pm, we saw a mircle take place. David's face no longer sags to one side, his speech does not slur anymore and he can find all of his words. Within an hour he was asking if the showers were cold at the JCC, if I had contacted his supervisor at the temple where he works and how soon he could have a chocolate chocolate donut - those things that are most important to him!!! We have laughed together, shared lots of hugs and kisses and marveled at his smile and sense of humor. He has been up and walking around and is able to eat solid food. The assistant surgeon marveled at how good he looks and how well he was responding. Everything looks very positive. He is scheduled for an MRI today and as soon as he has that done and can get up and walk around some more, they will move him to a regular room. Right now, he just needs to rest and not have a lot of stimulation. We are hoping he will be able to have visitors by Sunday afternoon.
i have been overwhelmed by the support, love, emails, comments, voicemails, phone calls, offers of food and help from all of you. Yesterday I could hear in my head all day the prayers and thoughts of all of you lifting us up and sending your love to David. I am unable to express my gratefulness and love to all of you. I am just overwhelmed by it all. I have never felt this kind of support and kindness from so many people. And to all of you at the JCC, I will always be thankful for all you have done for my husband- I will always be in your debt. I had no idea he meant so much to you all.
We still have work ahead of us, but David's biggest concern was that he get through surgery and still be able to function well for however much time he had left. His prayers have been answered; our prayers have been answered and your prayers and good wishes have all been answered. It has been a miracle to all of us - thanks to all of you and to a kind and loving Heavenly Father who hears our pleas, knows our desires and blesses us because of our faith and prayers. I will always be in His debt as well.
I love you all.
Janis

Finally Asleep



Mom and Dad at Andy's Wedding

The lights are finally off and dad is finally asleep.  The steroids they were giving him right after surgery to help with the swelling were keeping him in an hyper-awake mode for many hours.  Several times this afternoon we thought he was asleep, and then he would comment on the conversation we were having.  It was quite humorous. 

The night nurse has been amazing.  He called dad "boss" and dad called him "sir" and it was a match made in heaven.  He explained so much to both of us about his meds and what to expect tonight and has been so kind and attentive.  We were given clearance just an hour ago for dad to begin eating and drinking.  Graham crackers topped with chocolate pudding are the snack of choice at the moment.  (Gross!)  LOL

There is so much medication going on.  He's on a heavy steroid for inflammation, an anti-seizure med, insulin, two IV's (fluids and one for sodium), an antacid, a long-term pain med, as well as an additional pain med for breakthrough pain.  The barrage of medication is expected to last another two to three days. 

Dad has been so concerned about responding to all of the comments on the blog.  He asks me to read them over and over again.  Thank you for all the kind words and thoughts today.  They have meant so much to him and to the rest of us as well.

We still have a long fight ahead, but feel a bit more confident about that fight at the moment.

An Even Smile

I can't stop smiling.  Miracles Happen.



Dad makes it to ICU



Mom answers all his questions



Dad is up in the ICU and we have set up camp in his room with him.  When mom saw him in the hallway he held up his hand, and she got to go hold it.  Once they got him into the room and hooked up to all the crazy machines he just wanted to talk to us, asking questions about the surgery and what the doctor said.  He asked about the blog.  We told him we'd updated quite a few times throughout the morning and that we'd read it to him after he rested.  He didn't want to rest, but wanted to hear what was written and every one's comments.



Dad's even smile!!!!



The best part is he smiled and it was even!  No drooping!  Mom just exclaimed, "Look!" and Amy and I went right over.  He was good enough to smile again so I could snap a picture.  It is such a relief.  He's even made a few funny comments (Just now he said, "Next time you update the blog tell every one that I think St. Peter passes out Peanut Butter Cups at the Pearly Gates."  Mom replied, "Not today, you're not there!").  And that brings such peace.  Dad isn't Dad without his humor.  I'm just waiting for him to make up a song about his tumor, and then I'll know that he's really recovering.

They are monitoring his neurological activity every hour.  So far he's passed all their tests.  We're letting him rest now.  The less stimulation the better.  In the mean time we get to enjoy the beautiful views of the valley from his room.  Good thing we can see the JCC (Dad's work) from here.  That way Dad can still make sure everything is going okay down there.

PS. Tracie- we read to Dad the story of yours that Mel posted.  He wanted us to tell you that he remembers that time and that he hopes everything is going well for you!

For those of us waiting in a far away land. . .

Dad and llamas

 . .  today could not have been any better except if I had been in the waiting room at the hospital. (I'm going to skip over the part where I showed the wrong episode of a video to a class because I was so distracted today - none of them said a thing and they couldn't answer a single question on the video sheet)  It is not fun having to be hundreds of miles away, not being able to do anything.  The support I've gotten here has been great.  The teachers I've worked with for the past three years at PCFC & now at IHS got me a card, flowers and a journal and have offered to watch my classes, make copies, etc.  It's totally amazing.  Several of my students have given me cards or offered me chocolate,  have been constantly asking about Dad, politely ignored any crying and have allowed me to break my rule about phones in class without expecting the same privleges in turn.  Friends in the ward have invited me over for dinner and many friends have been praying for us and two of my friends got me a plane ticket to go home during Spring Break instead of having to drive.  The best part is hearing memories that some of my friends have about my Dad, that even I don't remember.  I'm going to share one those stories with you.  My friend Tracie Moore Egelston wanted to share this memory:

"I read through the whole blog and when I wasn't crying. I was laughing.  I have SO MANY wonderful memories of your dad when we were all growing up in Westminster.  I remember trying so hard to be quiet when your dad was sleeping and I actually remember being at your house on a Sunday watching Star Wars.  When my grandpa passed away, I stayed with you guys.  Your Dad made sure I was okay and asked me questions about my grandpa.  I know I would have not dealt with that loss so well if it had not been for your dad and your whole family.  Your dad always treated me like the "The 7th Smith Kid"!  I am praying and sending lots of love your way.  Miles and time may have seperated us over the years, but I still love my "family".  The special family God himself chose to be such an important part of my life."

Thanks Tracie  & thanks to all those who are helping me survive so far away.  I can't wait to go home in 9 days!

Surgery is Over

Finally, surgery is over.  It was longer than expected, but is the surgeon is very pleased with the results.

The mass was described as about the size of a brown chicken egg - definitely originating in the brain.  Dr. Jensen used an ultrasound machine with a high power suction/vacuum unit to blast and remove pieces of the Deathstar.  He mentioned that he was able to remove all could be seen, however there are often microscopic cancerous cells that remain behind.  We will treat these with chemo and radiation therapy.  Dr. Jensen also said that the language and speech center remains intact and that dad should experience no problems in that area.  Tomorrow an additional MRI will be completed and on Wednesday, Dr. Jensen will present dad's case before the specialist council and a treatment plan will be decided. 

Dad will spend about an hour in recovery before being moved to the ICU where we will be able to see him.  He could be up and moving as early as this evening and could potentially leave earlier than planned. 

PS - They performed part of the surgery while dad was conscious.  The surgeon reported he seemed annoyed every time they woke him up and that he mostly snored through the surgery. 

Thank you all, for your thoughts and prayers today.  We will continue to report as things progress. 

Just got the call he's out of surgery. More soon.

Progress Update

 In the waiting room they have a screen (see below) that shows the progress of all the surgery's going on.  Dad is the top pink bubble.  We're getting towards the end.  Now this is just the estimated time of surgery, it could take much longer.  But we feel like we're making progress.  Nothing to report really.  Mom, Abbie, Grandpa Smith, Uncle Russ, Mike and I are just sitting here waiting. 

Just got a call from the nurse.  They are still operating.  No thoughts on how much longer it will be.... but she said he was doing well. 

Keep the prayers coming!

About Half Way

Mom just got a call from the nurse.... we're about half way through -- approximately two more hours.  Everything seems to be going well. 

Last thing dad said to the surgeon:  Please put my skull back together straight.  I don't want a crooked head.

The picture was also taken last night.  He has a pretty good shaped head.  :)

The Waiting Begins

Dad and Crew

Dad was rolled into surgery a few minutes ago. 

Status: The surgeon reported some great news!  The images from the Functional MRI were exceptionally clear.  Dad's speech and language center is located on the right side of his brain.  The Deathstar is centered on the left side of the brain.  According to this Wikipedia link on the Language Center, for 98% of people, the language center is in the brain hemisphere opposite of the dominate hand.  Since dad is right-handed, you would expect his language center to be on the left side.  This makes dad a 2% exception!  Boy are we happy about that! The surgeon was highly confident that they would be able to remove almost the entire tumor.   That is REALLY great news.  The images were so clear that the Surgeon felt he could shave an hour off the surgery.

Thank you for all your thoughts and prayers.  More to come soon.

Surgery Schedule

Today at dinner with the family.

I drove Dad and Abbie home from his office (Salt Lake Jewish Community Center) on Tuesday afternoon.  As I pulled on the I-215 from Foothill Blvd. and crossed the I-80, I made the comment that those freeways and area remind me so much of my early 20's.  (I lived in that area before and after my mission for about 4 years.)  Dad sat in the passengers seat with his eyes closed and said, "How old are you now?"  "35", I replied.  "Well start driving like you're 35 and not 21!"   I laughed.  Yes dad, I'll slow down.  

He told us one reason he wanted to start a blog was so that people knew that even while he was dying, he was funny and could still laugh at himself.  :)

The past few days have been difficult.

The PET scans were very tiring for Dad.  The nurses and doctors said he seemed very forgetful during the procedures.  (He tried to get the nurses to give him a picture of the Deathstar for his blog,  they just laughed.)  He is continuing to lose his balance and has taken a number of falls in the last 24 hours.  The right side of his body is continuing to lose functionality.  With everything going on, we made the decision to find a new home for Max the dog.  Max left last night.  It was a very difficult decision, and very hard on dad.

My dad is an amazing man, and has affected the lives of so many.  We have had visitors from the ward all week, sharing how much they admire dad and offering love, prayers and support.  When mom explained to one of the bishopric members that he sleeps a lot, he replied, "Well he is a high priest, isn't that what they do?"  (ha ha)  Today was his last day at work for awhile.  Mom said everyone was so kind and just hugged him and offered kind words and support.  Thank you to all who have reached out.  Dad loves reading and  listening to your comments from the blog and the emails you send.

Surgery is scheduled for tomorrow morning at 8am.  The surgery is expected to take at least 4 hours.  Mom posted a great explanation of the procedure and how the surgery should go. (Surgery Update)  We will update the blog tomorrow frequently as things progress.  We know that they will keep him in ICU for 2-3 days and another 2-3 days in regular care.  We don't expect him home until Wednesday or Thursday of next week.

When asked how they can help, Dad always asks everyone to pray for the surgeon as much as for him, that he will have a steady hand and his vision will be enlarged so he will be able to remove as much of the Deathstar as possible.  Please add Dr. Jensen to your thoughts and prayers.  We'll know a whole lot more in 15 hours.

Multi-Tracer PET Assessment

Dad has elected to be part of a study Dr. John Hoffman is doing at the Huntsman Cancer Institute on the behavior of primary brain tumors.  The purpose of the study as stated in the consent and authorization forms is as follows:

"The Study will use a relatively new imaging scan, called positron emission tomography (PET), to study how your tumor behaves.  The PET scan uses imaging agents, called "tracers", to look at your tumor.  Each tracer has a small amount of radioactivity, which allows that scanner to see where the tracer goes.  This study will use four tracers to look at you tumor in a way that hasn't been done before.  The four tracers are:
1. FDG, which measures how fast your tumor is metabolizing sugar;
2. FLT, which assesses how fast tumor cells are dividing;
3. Water, which measures blood flow to the tumor; and
4. Acetate, which characterizes how fast the tumor cells are growing larger.

PET scanning with these tracers can provide a more complete picture of the status of tumors, and may potentially provide new insight into the best ways to treat and manage patients with brain tumors."

They are hoping that by doing this study they will be better able to pick the right kind of treatment for primary brain tumors.  As I stated in a previous post, this study will have no effect on Dad's treatment plan.  This is all for the benefit of future patients.

Tuesday Dad had his first round of PET scans.  He was there for a little over three hours.  He said it was really hard to have no one else is in the room with him because of the radioactivity.  He asked the nurses if someone could go in with him and hold his hand today, but they said no.  He has to lie still for 2 hours while he's given these "tracers" and scanned.  At the same time they take blood samples.  In the paper work it says they will take about 23 blood samples (a total of about 5 teaspoons).

After Tuesdays scans Amy and I brought him lunch at his work.  When he told us how hard it was for him I told him it was totally elective and he could drop out of the study and not have to go back for another round.  He responded, "If this helps someone else, so they don't have to go through what I am, then I'll do it."

And that is what we all hope, that better treatments come available to lengthen life and preserve quality of life for others.  Especially because this really isn't any fun for anyone.  To be candid, it is really difficult to watch my Dad struggle, to watch him decline by the day.  And as hard as it is to watch daily, I'm grateful I get to be here at my parents home to help in any way I can and to spend whatever time I can with my Dad.

Memory

One of my favorite memories of my dad involves one of my dad's favorite places in the world, 7-11.  :)  It was a typical Saturday morning in my childhood, I couldn't have been older than 8 or 9.  My mom had spent the morning telling us to "Be QUIET and DON'T wake your dad up!" while we watched Saturday morning cartoons and acted out G.I.Joe battles.  Dad worked nights, and I imagine he never slept much on Friday night/Saturday morning.  We heard heavy footsteps on the stairs and I clearly remember the look of panic in Robert and Mike's eyes as they stared at me.  "Clean up" Mike shouted, but Dad was in the room faster than me could manage to get the cushions on the couch. 

"What are you doing?" he said in a somewhat raised voice.  "Wrestling," Robert responded very matter-of-factly, dads raised voice never seemed to unnerve him.  "Why did you stop?" Dad said in a very playful voice and then picked Mike up and threw him in the cushion pile.  We wrestled for what felt like hours as Mike and Rob showed off their newest WWF moves and I tried not get tickled....  dad always cheated and tickled us.  I HATE being tickled.  THEN - on a Saturday morning BEFORE breakfast he took us to 7-11 for slurpees.  I did all my chores that day without complaining.  I even remember it was my turn to pick up the dog poop in the back yard.  It was a fun day.  I loved spending Saturday's with dad.

Status:  As you probably know, surgery is scheduled for Friday.  We are not sure exactly what time yet, but will let everyone know when we do.  Dad's headaches persist.  We're hoping removing some of the tumor will alleviate some of the pressure in his head and give him some rest from the headaches.  We are so grateful for your prayers, calls, comments, emails and support.  Katie (Robert's wife) wrote on her blog that their son Lincoln "prays every day for Grandpa David to live to be 365 times 11 or else to 1,000 years old."  Thanks Lincoln, that is our prayer as well.

Mike shared an interesting perspective the other day.  He said he felt that knowing your time frame for death was truly a merciful gift from our Heavenly Father.  When you're taken instantly in an accident or tragedy, many are left behind sometimes with regrets and without closure.  Most of us procrastinate making needed changes to our lives and relationships thinking we will get to it eventually.  Knowing your time is limited brings some added perspective, clarity and motivation.  It allows everyone the opportunity to make the changes they want and to truly enjoy the time they have together.  Though I fully expect to have my dad around for awhile still, I'm grateful for the clarity this experience as well as my mom's cancer a few years ago has brought to my life.  I love you, dad. 

Dad's Long Day

Friday was a really long, hard day for Dad.  After a few hours in the office at work I took him over to Research Park at the U of U to do two MRI's.

The first MRI was the functional MRI.  As Amy stated previously this MRI was done to map where exactly Dad's speech and language center is in relation to the Deathstar.  I got to sit in on the instructions the doctor gave Dad before the MRI began.  We went over a few of the tests (or stages) they would be doing.  The stages rotated between periods of activity and rest.  Some of the stages included:

• Dad was asked to tap his tongue on the top of his mouth making a "T" sound for 20 seconds, then the word REST would appear for 20 seconds. 
• During another stage over the headphones Dad would hear a descriptive sentence like "Something cold you eat on a cone."  Dad was instructed to say in his head what the sentence was describing. Next he would hear scrambled language.

The doctor explained that answering right wasn't the point, but that Dad keep trying and thinking to help acquire clearer pictures.  The test lasted for about an hour and half.  Because the Deathstar is really affecting his ability to think of words, say words and remember things this MRI was really taxing on Dad.  He was pretty wiped out and really sick to his stomach afterwards. 

With only about 15 minutes of resting with me in the waiting room, they called him back to do his second MRI.  This was a regular MRI.  Combining the functional and regular MRI, the doctors will be able to determine what parts of the Deathstar they will remove and what parts they won't.  The hope is that when the two are combined Dad's speech and language center won't be intertwined much with the Deathstar.  The surgeon will only take what he can to preserve Dad's ability to communicate.

After the MRI's we had to take a trip up to the Huntsman Cancer Center for Dad to have some blood draws.  These are for the study Dad has elected to be in (we'll write about that later).  But for now, know that the study has nothing to do with Dad's current treatment plan.  It's additional work to hopefully help people in the future.

Dad crashed on the way home (as in slept, not crashed his truck because I was driving).  And pretty much slept the rest of the evening and most of Saturday.  He was sick to his stomach that whole time too.  Saturday afternoon Dad got up and milled about the house as Mike, Amy and Mom rearranged the bedroom and moved his new recliner in.  He's got a sweet set up now.

It has been two long days... and I'm sure there are many more of those to come.  We are counting down the days to surgery because that is when we hope healing and some improvements will come.  Thank you all for your phone calls, emails, comments and prayers, they give us strength to carry on.

Surgery Update

I'm going to follow Amy's example and add a picture of David each time I post as well.

David has now been scheduled for surgery on Friday, March 25 at the Huntsman Cancer Institute. Yesterday when we met with Dr. Jensen, I could sense David' sense of relief and also his confidence with this new doctor and I think that makes a huge difference. I will just briefly highlight some of the conversation for your information

* Everything Amy said about the functioning MRI is correct. If David's language/memory/speech area is outside of the tumor, then Dr. Jensen will just remove the tumor. If that same area is a little inside the tumor, the Dr. will remove as much of the tumor as he can and try to leave the language area alone. If the tumor is right on top of the language area, then the Dr. will do what he called "a careful biopsy," meaning he would take just a small amount of the tumor to confirm the diagnosis and hope for good results from radiation and chemotherapy.

* When asked about David's prognosis, he said that he had patients with this kind of cancer from level 1 to level 4 and their average survival rate is 2 years - which gave David much hope. He also told us that he had some patients that were 4 and 5 years out with that same kind of diagnosis, but he did not tell us what stage they were at when they began the treatment.

* Dr. Jensen will do the surgery, but Dr. Coleman will be the oncologist overseeing the treatments after surgery. He is quite renowned for his skill and Dr. Jensen told us he was the only neuro-oncologist in the state of Utah. All of this was comforting to David.

We will keep you posted as things progress. David has his functioning MRI on Friday the 18th, his pre-surgery admittance tests on Thursday, the 24th and surgery on the 25th. He had a bad headache this morning, but his headaches seem to lessen throughout the day. Other than that he is in no pain and is very comfortable - thanks to those who have helped in the purchase and arranging for a very nice leather recliner (Nina, Amy, Abbie and Andy.) I know he will appreciate this more and more every day.

Thank you all for your emails, prayers, food, financial support and help at home. Did I tell you how wonderful it was to have all of the family home this past weekend? They are such a comfort to us and they are such kind loving people. Little Crew (almost 3) asked David if he was sick and David told him yes and Crew asked "In your head?" David said it was and Crew said, "That's okay, Grandpa David, my daddy will give you a blessing," and cheerfully scampered away. Our five little grandsons are so precious to us and we are so glad to have them around.

We'll keep you updated.

All of my love,

Janis

Still on Target

On the recommendation of Michelle (Mike's beautiful wife), dad sought a second opinion today with Dr. Randy Jensen at the Huntsman Cancer Institute (http://www.huntsmancancer.org/patientInformation/bios/jensen.jsp).  Dad was really encouraged by Dr. Jensen and his thoughts on the situation and has decided to go forward with him for his surgery and treatment.   

Dad's biggest concern is his speech and language functionality after surgery.  To preserve as much as possible, Dr. Jensen has recommended a Functional MRI prior to surgery.  This procedure is an imaging technique where brain activity and function is mapped.  Dad will be asked to read passages and respond to questions and pictures while brain images are taken.  This allows the doctor to see exactly where the speech and language centers of the brain are since these are slightly unique for each person.  These images are then synced to the images of the Deathstar.  In some patients, this allows for a cleaner surgery.  The Functional MRI is scheduled for Thursday of this week (March 17) and dad's brain surgery has been postponed to next week, in order to wait for the processing of the new MRI.  As soon as a date is scheduled, we will let you know.  My mom will correct me if I missed anything. :)


On another note -- I've decided to share a picture of dad every time I post.  My brother Robert was a huge hockey fan growing up (hence the Puckhead hat and the Red Wings hat in the background).  We all seemed to follow hockey for a time, and some of us still do.  I get a kick out of this picture every time I see it.  Dad loves to watch sports.  He was quite the Lakers fan when we were growing up.  I can still name almost the entire team from 1983: Abdul-Jabbar, Scott, Cooper, Johnson, Garrett, Jordan (not Michael), Nater, Kupchak, and others I can't remember.  (I honestly did that without looking.)  We had good times growing up watching sports together.  Gotta love that mustache!

UPDATE:  The original post stated that Dr. Colman would be surgeon.  After clarification, Dr. Colman will be dad's oncologist, and Dr. Randy Jensen, now listed above will be the surgeon. 

The Beginning

A few weeks ago my mom called me.  "Have you noticed anything different about dad?"  He had just been in Washington for a few days to move Abbie to Utah but I hadn't noticed anything.  Dad seemed tired and a little withdrawn, but under current circumstances, totally understandable.  Yet, mom seemed sure there was something wrong and asked dad to get checked out.  After a brief doctors appointment, dad has a complete brain MRI on Friday, March 4.  The doctor wasted no time and called the very next day to set appointment with a specialist.

Diagnosis:  Glioblastoma, the most common and most aggressive type of brain tumor there is.  (http://en.wikipedia.org/wiki/Glioblastoma_multiforme) 

There is no clear cause for these types of tumors and no genetic connection.  It isn't something he did or didn't do.  The doctor said, "You're just unlucky."  Wow... that's some luck, huh?

We have a long passionate history with Star Wars in our family.  It was one of the few movies dad would let us watch on Sunday, using the clear battle between good and evil as his reason.  From dogs to llamas, several of our pets have been named after Star Wars characters.  As we begin this battle with brain cancer, it seemed only fitting that we turn to Star Wars for the name of our opponent:  Deathstar.

There has been such a great outpouring of love and support from so many of our family and friends.  We appreciate all your phone calls, Facebook posts and messages, and emails.  We started this blog to help keep everyone up to date on the battle. 

Status:  Dad is scheduled for surgery on Friday, March 18.  The goal is to remove as much of the deathstar (tumor) as possible while not causing any further damage to dad's brain.  Although they don't expect this to alleviate any of the current symptoms, short term memory loss, tiredness, and just a general mellowness, they do expect that this will help to prevent further brain swelling which will help to prevent further symptoms.  Dad is expected to spend 3-4 days in the hospital after surgery. 

We will be posting here regularly to share our experiences with you.  We will share all comments and posting with dad, so feel free to share your thoughts for him here.