Wednesday, April 27, 2011


Dear Friends and Family:
As some of you know, a personal post by a member of our family was accidentally posted to this blog. I would ask that you forgive us. We are all under a great deal of stress with David's situation, not to mention events happening in our own personal lives. We are not a perfect family; we are just trying to figure all of this out. I hope that you will be understanding and kind with us.
And because I'm a mom, I just have one comment about this kind of social interaction. Who is the real us? We can pretend to be someone we are not when we interact via the web or make comments on other's blogs. Is that the real us or is that someone we pretend to be? Today's social media allows us to become whoever and whatever we want to be - "a man unstable in all his ways." It behooves each of us to have integrity and be the same kind of person at all times and in all places - even in our social media interactions - or else we may forget who we REALLY are. Enough of that lecture from Mom.
We are thankful for your support and help; please continue to pray for our family as we struggle to make sense of all of this.

Radiation/Chemotherapy Update

Yesterday, David had his follow-up visit with Dr. Randy Jensen, the surgeon who did the operation. He is healing very well and will be tapering off the anti-seizure medications over the next few days, which the doctor said would help him with his balance and his sleepiness. And the best part was we didn't have to make a follow-up appointment!!! Hopefully, as much as we love Dr. Jensen, we won't have to go see him again!! But David did ask him if another surgery was possible and the Doctor said, "Only if there is a real immediate need." But right now, there is no need!!

Radiation is going well so far. The nurses love David's humor and jokes and I think he likes being pampered by them!! He is expected to lose his hair where the radiation enters his head and where it exits. As of today, we can't tell exactly where that is, but I'm sure it will show up. Chemotherapy has not made David sick, although, he hasn't wanted to eat very much. The radiation is expected to zap his energy level beginning at about the second week and then continue until treatment ends which is June 2. He will then have another MRI the end of June to see how the chemo/radiation treatment has worked.

This Friday it will have been 5 weeks since his surgery and just this last week we have seen continued and steady improvement in his balance, memory and speech. He reads a page in the Book of Mormon each night with us and it is comforting to hear his voice and his speech get better and better each night. He is also going to work more and staying a little longer each time.

We are all very thankful for the answers to our prayers and for the patience and faith to endure this illness. Thank you for your help and support. We love you all.


Thursday, April 21, 2011

Daily Grind

Well, today marked the start of Chemotherapy and Radiation for Dad.  We now move into another treatment phase (instead of recovery).  Here's what Dad's daily schedule looks like now:

6:20- Mom leaves for work, Dad goes back to sleep
8:00- Amy or I come bug him to wake him up enough to want to eat something.  We make breakfast while Dad takes his blood sugar.  We deliver breakfast along with his morning medications (a total of 5 pills)
8:30- Dad falls asleep watching the morning news.

12:30- Dad takes his anti nausea medication
1:15ish- We drive Dad up to meet Mom at work
1:30- Dad takes chemotherapy pill (while we're driving)
2:00- Meet Mom, switch cars and head up to Huntsman
2:30- Daily does of Radiation
3:00- (at least we hope this will be the time) Head home
4:00- Relax at home for the evening
5:00- Dinner
8:00- Family scripture and prayer and nightly medications (including insulin injection and now his antibiotic)
9:00- Most lights go out at the house (a.k.a. Bed Time)

Dad gets some free time between 8 and 1.  Lately he's been up and about either working from home, going on a walk, looking at the small garden I've managed to plant, or sleeping (This week he even made it out on a drive with Uncle Russ!).  He's hoping to be able to stop in at work a few times each week before his afternoon treatments.  We hope he'll have the energy to do as he wants.  We don't really know what to expect, except Michelle mentioned they have shirts that say: "Eat, Sleep, Radiation."  So we are trying to keep our expectations as realistic as possible. 

 As you can see from the picture above Dad's scar is looking really good.  We saw a handful of people with the same scar at radiation today.  Dad is also wearing one of his "Man Bibs" that Mel gave him.  We've just been using a towel, but now he looks more stylish. 

Here's where we go 5 days a week up at the Huntsman Cancer Center

Here's the puzzle I'll be working on each time we go up!

Monday, April 18, 2011

The Sounds of Sunday

Yesterday, Sunday, David went to Church for the first time in several weeks. He told the Bishop he was very glad to partake of the Sacrament with the ward family and asked him to express his gratitude to the Aaronic Priesthood. David was quite ill on Saturday with a very bad headache and a queasy tummy, so I didn't expect him to make it to Church at 9:00am, but he did. He was very tired when he got home and just rested the rest of the day.

Except we had a great family day! First of all, Shawn and Amy Theobald and their 4 beautiful children came to visit us before they move to Boston where Shawn will be entering a nurse anesthetist program- what an accomplishment for him! We are so very proud of him and all that he as accomplished. Shawn lived with us for his senior year at Delta High School and so we have a special place in our hearts for him. This visit meant a great deal to David. It was a lovely visit, and Amy is just one of those good little mommies who loves and watches over her children with such love and care. We hope for the best for your family, Shawn and Amy, and a safe journey to New Hampshire! We love you all!

Then Mike, Michelle, Crew and Hudson brought dinner for us and we ate and played and had a wonderful time. Crew and I played good guys/bad guys; hid behind the fence for Abbie to find us; watched the birds; ate watermelon and kiwi; sang songs in the swing and it was all a perfect ending to a wonderful Sunday.

David had great plans to work in the garden this week, but we are expecting rain every day until Friday, so the garden will have to get by without him for a few days. But the lettuce and beets Abbie planted a few weeks ago are coming up! This was part of our garden last year!!

Well, we're still waiting for radiation treatment to kick-in to determine our schedule for the next few weeks and what we can or cannot plan to do. David gets frustrated at his inability to do all he wants to do, but we do see improvement overall. I think he will probably spend a few hours at work this week - there's a lot going on there this time of year and he is constantly worrying and thinking about it.

We'll keep you posted. Thank you for your prayers and good wishes. This past week has been a very difficult one for us. This being in limbo between jobs, between schedules, between medications, between responsibilities, between reality, between realistic expectations, between life and death is overwhelming. We are figuring it out day by day and are very grateful for your continued kind words and hugs.


Thursday, April 14, 2011

Strength and Coordination

Dad has his second appointment with the occupational therapist today.  After his last appointment, he wasn't sure going again would be very helpful, but I think today helped to change his mind.  Because I wasn't at the first appointment, the therapist shared with me some of dad's results.  His weakest areas are in memory and processing.  He also had a significant grip strength difference between his hands, a 37 lbs. difference. 

The therapist first laid out what he had set as goals for dad to complete in the next four weeks. 

1.  Maintain a regular routine of strength and coordination training for his right hand and arm.
2.  Increase energy conservation efforts.
3.  Become complete independent in all self-care areas. 
4.  Keep track of daily tasks and activities in a notebook.

We went through each goal individually and discussed them.  Mark, the occupational therapist, began discussing energy conservation (goal 2).  And by this, we don't mean light bulbs or energy star appliances.  Many in recovery have a tendency to try to do too much at one time rather than try to space activities throughout the day allowing for breaks and resting periods.  When this happens they tend to operate in peaks and valleys, pushing themselves to do to much and then crashing for hours (or days) at a time.  I've seen dad go through this cycle in the short time I've been back.  The goal here is to operate on more of a gentle wave (think cosine or sine wave) and not peaks and valleys (tangent waves).   Keeping track of dad's daily activities in a notebook (goal 4) is designed to assist with this effort as well.

Since his last visit, dad has become completely independent in his self-care (goal 3).  We don't even have to tie his boots anymore!  Mark was impressed and marked this goal as complete. 

The last 30 minutes of the session was devoted to learning and practicing new strength and coordination activities for dad's right hand.  As the exercises were introduced, I found myself trying each one to check my own reaction and abilities.  They range from squeezing puddy to making finger rings with each finger tip.  Some exercises he was really good at, but others he really struggled with.  He told Abbie and I earlier today that even from the time he was in scouts, he could never make scout sign without pushing his pinkie and thumb together with his left hand.  Dad was able to feel within a few repetitions of these exercises that they would work his muscles. 

After his first visit, he wasn't sure that the games (assessments) would be worth his time.  But I think after today he felt a little differently.  It was obvious there were things he needed to improve on and the therapist gave him concrete ways to do that. 

On a personal note:  I'm glad to be back in Salt Lake with my family.  Melody and I switched places last week while she was on spring break.  Dad has improved significantly while I was gone.  His speech seems clearer and he's awake more during the day.  His balance is improving as well.  I'm excited to see his progress.  Next week will bring a whole new world as we begin radiation and chemotherapy.

Wednesday, April 13, 2011


I think we are getting closer to starting the radiology - at least I think so. It seems every time we go to the doctor's we expect to find out the EXACT start date so we can get on a regular routine. Yesterday, David and I went to the Radiology Department at HCI to get a mask made of his face so he can begin radiation. The mask helps to keep David's head in the same place each time he goes in for radiation. Then they got him on the table and made sure everything was in the right place. Soooo, next Wednesday, we go in for a dry-run with mask and everything and then the radiation begins on Thursday - but we still won't know for sure what time until after our appointment on Wednesday. But we do know it will be daily radiation treatments (approximately 1/2 hr) every weekday for 6 weeks - so radiation will probably end about the beginning of June. It's a good thing - David is planning on hiking in the Uinta's in August!!! Although Andy and I discussed the possibility of having a helicopter deliver him to a camping site and then delivering him home by helicopter, too. Unfortunately, for David, his favorite part is actually walking along the trail with the llamas!! Yea, I don't get that either...although I know MOST of you do!!!

David worked for 2 hours before he went to the HCI, and then we were at HCI for another 2 hours and he was exhausted!! Poor guy! He slept very well all night though so that was a good thing. He was hoping to be able to work a few hours each day this week, but even he didn't feel like going in today - which is a good thing. He feels so much better, is able to speak more clearly and retains information better after he is rested. And I think he will need all of his strength to get through the radiation!!

David has also been put on daily insulin injections to keep his blood sugar under control. This whole thing has really played havoc with his numbers. Hopefully, the insulin will help stabilize his blood sugar - and watching his diet - which we are trying to do!!

The picture above is of David at my niece Joy's wedding at the San Diego Temple last June with both of my sisters, Jodie and Krista and some of their children. David loves California and he thoroughly enjoyed the time we were there. He will always be a California boy...

Thank you again for your continued prayers and happy thoughts. They are so appreciated by all of us.


Tuesday, April 12, 2011

Walking the Line

Dad met with a therapist at the Hearing and Balance Center yesterday.  They put him through a series of tests to figure out the right exercises for him to do to improve his balance.  The first test they strapped Dad into a machine that moved the two plates he was standing on to test where his center of balance is and how he compensates when he is knocked off balance.  All in all, the doctor was impressed with Dad's balance and how well he does compensate.

They tested his reflexes, and then ran him through a bunch of exercises.  He had to walk the line a few times.  Dad told the lady, "I don't drink because I can never walk the line even when I'm sober."  She's given Dad a list of exercises to do each day for at least 15 minutes.  She'd really like him to practice twice a day.  Dad knows that the more he follows through, the better his balance will be.  We'll meet with the Balance Therapist every two weeks.  The best part about the visit- Dad is graduating from the cane to a pair of hiking sticks.  The therapist said they would probably help him not lean to the right so much.  Dad's just excited to have something with a poky end to poke me with.  And I'm excited to steal them away from time to time and take some serious hikes.

Later today we head back up the Huntsman Cancer Center, where Dad will get outfitted for radiation.  He's not so excited.  But we are all looking forward to knowing what the schedule will be for the next 6 weeks!

Friday, April 8, 2011


As part of Dad's recovery the doctors gave him orders to meet with an occupational and a physical therapist.  Today was Dad's first visit with the occupational therapist.  This visit was just his assessment.  Next week Dad will meet with him once and then it's recommended that he continues twice a week while he goes through radiation and chemo, depending on Dad's energy level.

The Occupational Therapist sat down with Dad and asked him about his job duties and responsibilities, his daily grooming abilities, his leisure time pursuits and the overall layout of the house.  He also asked Dad about his vision, speech, memory and how Dad goes about organizing himself each day.  Then the therapist conducted some more concrete assessments to create a baseline to measure progress against.

Dad had to do the standard vision test (Ironically he has better vision out of his right eye, the one he closes most of the time).  He also had to stand one foot in front of a board with lights on it (see picture above).  Dad had to find the light that was on and push it off, then find the next and push it off, etc.  He had 60 seconds to find and turn off as many as he could.  This measured his reaction time as well as his ability to see in each visual field.  Dad's visual ability and reaction time was the weakest in the bottom right.  Which we could have predicted, since every time Dad has tripped over something it has been on the right side. 

Dad did many other assessments regarding verbal and visual memory, coordination and strength.  He also made Dad start from 100 and subtract by 7's.  This must be something these therapist are all taught in school, since the one in the hospital asked Dad to do the same thing.  Dad just said, "I knew I should have memorized that." 

From these assessments the therapist gave us many recommendations.   He counseled Dad to slowly take on more responsibilities to build endurance and coordination back.  He also said we should make sure that his walking pathways are clear from any tripping hazards (learned this the hard way when he was out in the garden with me the other day).  He thought Dad would benefit from helping to fold the laundry (coordination) and using a spray bottle and cloth to wipe down the counters with his right hand (grip and arm strength).  I think Mom would benefit from that one as well.  He suggested that as we are driving Dad around, we should ask Dad what signs we are passing, or ask him to tell us when he thinks we should turn.  We'll see how well that one goes....  We are also going to start having him search for particular word phrases, pictures, headlines etc. in the newspaper.  I think this would be a fun one to do with his older grandsons!  The therapist also is recommending some speech therapy.

The therapist said he'd work with Dad to help him get back to driving ability and able to complete more of his work tasks and the tasks at home he wants to do.  I found it all very fascinating.  Dad on the other hand said in the car, "I don't really think I need to go play games with this guy every week."  Hopefully Dad will see and feel progress each time he goes!

Thursday, April 7, 2011

MRI Pictures

Here are 2 MRI pictures taken the day after surgery. The bright spot on the right side of the picture is where the tumor used to be. You can see how big it was!! Abbie tried to bring up some of the pictures of the tumor itself on the computer while we were waiting for the doctor to come in so we could take a picture of them, but we just couldn't find them and we were afraid the doctor would walk in on us!!! The doctor explained that the bright spot shows some brain tissue swelling and is also an indication of some of the tentacles of the tumor that were left behind and still activem but you can see how big the tumor was to begin with.

Yesterday, Abbie, Mel, David and I met with the oncology team. Every time we are at the Huntsman Cancer Institute (HCI), we meet another team and everyone of them has been supportive, caring and helpful - some of them are even funny. Barbie the nurse and Dad have become good friends. She even gave him the remote to his chair yesterday which he promptly moved up and down, up and down and up and down. And Abbie is working on a puzzle each time we go and she has gotten quite a bit of it put together. I imagine by the time we are done there, she will have finished this one along with several others!!! But, oh, how thankful I am to have the girls with me there.

Last night, Rich Hadlock and his son Kayden came over to visit us. They brought me a box of chocolates (which I will thoroughly enjoy), but they brought David a 2010 commemorative Boy Scout t-shirt for the Boy Scout's 100th birthday last year. They just wanted to say thank you to David for his work in the Scouting program and the good influence he has been on the Cubs in our ward. David was very touched and so thankful to have someone visit. The only other person who has come to visit was another mom and her Cub Scout, Traci and Logan Gunn, who brought John Wayne movies for David to watch. I have always been very proud of David and his Scouting work and experience. I told him a long time ago, that I wasn't worried about having to deal with hard living situations or threats because he was an Eagle Scout and I felt protected by his side. That is true even today...even today. Thank you Hadlocks and Gunns for your appreciation of David; this means so much to him. As soon as we get the shirt on, we'll post a picture of it!!!

David starts occupational therapy tomorrow, physical therapy on Monday and goes to the Radiation Clinic on Tuesday for a simulation dry-run before he starts the radiation - probably on Monday, April 18. We'll keep you posted.

Love to all of you from all of us!

Janis and family

Tuesday, April 5, 2011

A visit with the Radiologist Today

Today, Abbie, Melody, David and I met with the radiologist Dr. Shrieve. He was a very quiet man and explained what the next part of the protocol would be in trying to rid David of the Deathstar. He informed us that the tumor is a Level 4 Glioblastoma - which we already knew - and that the next part of treatment would involve a radiation and chemotherapy protocol. Radiation will involve 15 minute treatments for five days a week for six weeks - a total of 30 treatments. Along with the radiation he will be taking an oral chemotherapy agent that is very easily tolerated with very little, if any side effects. The radiation will cause some hair loss around the site on his head where the radiation will be targeted and he will probably be very tired - more so towards the end of the treatment, but the doctor thought he would be able to work, but need some rest during the day. A month after the radiation treatments, they will take another MRI to check the effectiveness of the treatment and make further decisions concerning treatment after that. He won't begin radiation for about 2 more weeks - until his surgical scar heals more and after the radiology team puts together a plan for treatment.

David asked the doctor about the long-term outlook. The doctor took a big breath and said that it would all depend on how David responds to the treatment. He said that after all of the surgery, radiation and chemotherapy, David was looking at 12 months - maybe 14. The doctor then told us that he had a few patients that had responded extremely well to the treatment and were still alive after 4-5 years. It will just depend on how the cancer David has responds to the treatment.

David continues to sleep and rest about 20 hours out of every day which the doctor said was very normal. He went up to work yesterday for a few minutes before he had the 30 staples removed from his head. The scar is healing nicely and doesn't hurt anymore. We continue to stay with him and watch over him so he doesn't fall, but we sure enjoy his comments and humor when we are sitting by him just talking.

Amy went back to Seattle yesterday for 1 week to do some work at her office. We really miss her!Melody flew in yesterday to stay for a week while her students are off on spring break. Thank you so much, Mel! And Abbie just stays by her Dad's side, takes him for walks, puts his shoes off and on and speaks comforting and reassuring words to David. I would not be able to survive this without my children coming and supporting me. This past weekend, the boys and their families came up and we laughed and played with the grandkids and had a wonderful time. Even though David doesn't participate much with us, he daily asks, "Will I get to see the little boys today?" I know how much he loves these little boys and wishes so much he could play with them more. I have the best family in the world!

My Bishop has often encouraged our ward to write questions down about our lives or the things we are struggling with before Conference and then listen for the answers because they will come. This past Conference was totally devoted to my list of worries and concerns - although I am already married, pay my tithing and my bedlam-ites have grown up! Thanks be to my gracious Heavenly Father, a loving and forgiving Saviour and the prophets on the earth today! We are so very, very blessed. Even during this difficult time for our family, there is peace and our faith is secure.

Please continue to pray for David and his ability to get through this next series of treatments. We love you all.


Saturday, April 2, 2011


A week before Dad's originally scheduled surgery we had a family dinner.  With the future uncertain, I felt like we needed to capture this moment together.  I had seen on a different blog that I read religiously that they often hired a photographer to come hang out during their family parties and events to document the whole thing.  I felt that is what we needed.  I love pictures, especially candid ones.  At the last minute I sent an email off to the author of the blog, CJane, explaining our situation and asking who she would recommend.  Her husband responded quickly and whole heartily recommended Justin Hackworth, a family friend of theirs, who he had already contacted on my behalf.  Justin gave me a call the day before and we arranged everything.  I thought it would seem a little weird to just have a photographer taking our pictures as we did what we as a family do best... hang out, eat dinner, talk and laugh.  But we both agreed it would be worth it. 

And Justin delivered pictures that we will treasure forever.  He captured our family just they way we are.  Here's a link to the slide show he made of his favorites from the night.  I cry every time I watch it.  These pictures are beautiful.

I highly recommend doing this.  Justin is amazing and takes beautiful pictures.  But if you can't get Justin, get someone.  It's truly worth it.

UPDATE: Dad is slowly recovering.  We try to go on daily walks, but sometimes he's just too tired.  This coming week he's got meetings with the oncology team and with the occupational therapist.  On Thursday Dad directed from his lawn chair the proper preparation of three of his garden beds.  We'll plant on Monday, after this little snow storm blows over tomorrow.  I think he enjoys being outside, it just takes all his energy to get there.  We hope he becomes a bit more stronger before radiation starts (potentially in a week).