Saturday, December 31, 2011

FYI

Last night, as Dad was surrounded by his family, his Spirit slipped away from his body and ended his journey here on earth.  He was peaceful, we were peaceful.

As we try to put into words our feelings about Dad and his battle against the Deathstar, we wanted to let you all know that his memorial service will be Thursday, January 5th, in West Jordan.  As we finalize details we'll make a formal announcement.

Two years ago for Dad's 60th birthday, Mom had a brilliant idea of asking all his family to write him a letter, sharing their favorite thing, or memory about Dad.  We would like to invite anyone who would want to, to do the same.  We will add them to his book.  We think it will be an awesome way to share with his grandchildren now and in the future what a wonderful Husband, Father, Brother, Son, and Friend Dad was. 

If you feel so inclined, you can leave a comment, email them to me at abbiesmith@gmail.com, or write one and bring it to the memorial service.  We will also have the notebook with paper and pencils at his service where you can write one there if you wish!

As I read through the blog yesterday from the beginning I was again struck with amazement over how many lives Dad has touched.  We are truly grateful for each and everyone of you.  Thank you for your constant expressions of love and support.

Love to You All!

Friday, December 30, 2011

Still Funny

As the final days of dad's life play out here at home, I've been thinking about my dad.  Abbie and I sat here reading all of the posts from the blog we started nearly 10 months ago.  One of the reasons dad wanted a blog was so that people knew that even in the face of death, he was funny.  I thought I'd share a few of the funny moments we've had with dad the last few days.

Dad at Zoo Lights with the grandsons
a few weeks ago.
Last Friday, on dad's birthday, one of the last truly coherent days we've had, Mel, Abbie and I were sitting in the bedroom with dad.  That morning we had reminded him that it was his birthday.  He was excited and was looking forward to the family coming to visit that night.  Abbie was just getting over a bad cold and still had some left over drainage.  She had blown her nose a few times during the morning, but during one particularly productive blow, dad opened his eyes rolled his head over towards her and said "Be careful, you won't have any brains left if you keep blowing like that."  Don't worry dad, Abbie has plenty of brains.  :)

A few weeks ago, I was sitting in dad's bedroom talking on the phone with my mom.  She was complaining about her boss and a situation at work.  I complained back about my boss and a similar situation.  When I got off the phone, dad turned to me and said, "Why are all men idiots?"  I laughed a little bit and reassured him that not all men are idiots.  Yesterday morning, dad was unusually alert.  Though he can't talk and wasn't opening his eyes, it was evident that he was aware of what we were talking about in the bedroom.  At one point during the conversation, I repeated that all men are idiots.  And Abbie, who was sitting on his bed, retorted, "Not all men are idiots." To which dad, raised his eyebrows and rolled his eyes.  He even gave us a half grin.  Apparently, dad believes all men are idiots.

Dad hasn't been eating or drinking for a few days.  He is neither hungry, nor thirsty, and has a difficult time swallowing.  Yesterday he seemed uncomfortable and asked for water.  Using the small mouth swabs we have, we swabbed the inside of his mouth with water a few times  This didn't seem to provide the relief he was looking for.  And then I had an idea.  I went into the kitchen and got a small cup of Diet Coke.  I brought it into the bedroom and dipped the swab.  "Want some Diet Coke?" I asked.  He raised his eyebrows and whispered yes.  After a few swabs of soda I said "This is the best idea I've ever had." To which dad raised his eyebrows and shook his head yes. 

After surgery dad told us that St. Peter hands out Reece's Peanut Butter Cups at the gates.  I hope he has a can of Diet Coke as well.

Thank you to everyone who continues to support us through this journey.  Your thoughts, prayers, emails, texts and phone calls help to sustain us.  We love you.

Amy

Thursday, December 29, 2011

LUCKY

Dad in his new birthday shirt
Dad was born December 23, 1949.  We were lucky enough to celebrate his 62nd birthday last friday night.  The whole family came up.  It was a very fun mad house with 11 adults and 5 grandsons running around in my parents apartment. 

Earlier that week Dad had another stroke, so he had pretty much been stuck in bed.  With a lot of man/girl power, my siblings got dad moved into his wheel chair and brought him out to the front room so we all could celebrate together. 
Crew telling Grandpa about his drawing

We started the evening with Dad's favorite dinner... hamburgers and beans.  Then Dad got to open his presents.  His grandsons gave him cards, drawings and Sawyer gave Dad an imitation Monet that he painted this summer.  It's awesome.  Dad was lucky enough to get gift cards to his favorite places to eat... McDonalds and Red Robin.

Amy explaining to Dad our gift
Dad checking out his lottery tickets
Ever since Dad's cancer diagnosis and strokes earlier this year, he's been constantly asking us to take him to Idaho so he can buy lottery tickets. When we'd shake our heads and ask why, he'd always respond, "I'm feeling lucky."  We've always found this humorous and a bit ironic.  One day at the beginning of December as I was driving around with Amy, we started to talk about what in the world to get Dad for his birthday.  I told her of my crazy idea of getting Dad lottery tickets from Idaho and wherever we could.  And since I'm the idea-girl and Amy's the details-girl; she went for it.  We posted on facebook and with the help of our friends across the country, and friends of friends, and our cousin's wife's brother's in-laws (I know it's sounding like a country song)... we received over 33 tickets from- Florida, Georgia, South Carolina, North Carolina, Virgina, New Jersey, New York, Pennsylvania, Colorado, Washington, California, Idaho and Minnesota! 

You guys are amazing.  Seriously.  We were overwhelmed by the response.  It was so fun to open the mail box each day to see who else made this crazy birthday gift come to life.  I know in situations like this people want to help but there isn't always something tangible to do... this was tangible and you delivered.  We feel really blessed!
which of Dad's llamas does it look like?

So we found a talking card that said, "We have 3 wishes for your birthday" on the front and then when you open it, the voices scream, "ONE MILLION DOLLARS."  It was perfect.  Amy helped Dad open it up and explained to him what we did.  He thought it was really cool. 

We then ate llama cupcakes (they reminded me more of the Cadburry Egg commercials where they put bunny ears on a lion... I'm allowed to say that because I made them), but Dad liked them, as you can tell by his best smile and my nephews recognized them as llamas, so that's something.


Dad's best smile

Before bed, we scratched a few tickets.  And did so again the next day, and the next day, and the next day. 
Our first winning ticket


Christmas morning... another winning ticket
I'm now feeling like Dad; Lucky.  Lucky to have him as my Daddy.  Lucky to have been able to spend my 31 years of life here with him.  Lucky to be able to celebrate his birthday this year with him.  Lucky to have each additional day to spend with him on this earth.  And most Lucky to know that I'll see and be with my Daddy again in the future. 
I love you Dad!

Tuesday, December 27, 2011

Christmas with my Papa

Last Monday (Dec 19th) I arrived at the Salt Lake International Airport.  I hadn't seen my Dad since I left in August.  When I left he was still working and getting around okay on his own.  I've talked to him at least twice a week since I left.  In my mind I knew that he's had some strokes and things weren't going all that well, but when you aren't there to see the changes, it's quite a shock.  Dad cannot support himself at all.  He's lost most of his ability to move his right leg and arm, and he has a hard time speaking. The week before I came, he was able to get out via wheelchair, but within a couple of days he was stuck in bed.  I spent most of my time sitting with him in his room watching Gold Rush, A-Team or NCIS.  A few of the days he slept a majority of the time - other days he was pretty awake and making jokes. Most of the time he didn't know what day it was.

 December 23rd was his 62nd birthday.  We combined Dad's birthday and our family Christmas party.  Dad decided he wanted to come out so we maneuvered him into his wheelchair.  We had hamburgers & beans (Dad's Favorite).  We did the Christmas Program Dad makes us do every year.  My brothers gave Dad a blessing and then we had cupcakes.  Not just any cupcakes, Abbie produced llama cupcakes.

Dad spent Christmas Day sleeping & I kept him company watching lots of NCIS episodes.  The next morning I sat with him until I had to leave.  He's pretty much sleeping all the time and he continues to have complications.  I'm really glad I got to spend that time with him.  Thanks to my siblings for letting me monopolize him while I was there.  I love you Papa!

Melody

Wednesday, December 7, 2011

Hospice Care

Last August, when I was at a work meeting, one of my faculty members sought me to out talk about my dad.  He wanted to know the latest on the Deathstar and how things were going with my family.  I have been amazed at the kindness of the people I work with.  His advice to me was this: "When the time comes, do not hesitate one single moment to call hospice.  They were so good to my mother as she passed.  Be sure to call them and get all the help you need."  I have always remembered that.

When things changed this week with my dad and Dr. Colman made the recommendation that we move to hospice care, I was very relieved.  But nothing prepared me for the amazing outpouring of kindness that has come our way in the last 24 hours.

Last night we had an assessment nurse come and visit to discuss the hospice program and admit dad into their care.  He explained that the entire goal of the program was to keep dad at home and to keep him safe, clean and comfortable.  He was incredibly kind to dad and explained that although it might feel like you have to give up some of your manliness - the whole program was designed to help him and his family feel safe and secure.  The nurse did a needs assessment and ordered some equipment to make things easier for us at home. 

This morning we had a wonderful visit from his assigned nurse.  She did a further needs assessment, took all of his vital signs, asked him about pain issues and explained more of how the nursing aspect worked.  We had another visit shortly after from the bath aide.  She will come in three times a week and help dad with showering and shaving.  She reiterated several times, as did all of them, that dad is in charge.  That whatever he wants goes.  He loved that.  :)

Shortly after we were visited by the hospice social worker and the spiritual advisor.  They were great.  At first it didn't seem like dad was really excited to see her but by the time she left, he asked when she was coming back.  She said to him to be sure to live everyday to the fullest and was very fun to talk to.  She also had some helpful things for mom. 

Next, the physical therapist came by.  He did a fall assessment for dad and did a few tests with him.  He will be able to continue physical therapy for a few more weeks to see if we can improve some of his independence and his walking ability.  They were very fun.  Dad kind of gave him a hard time, and he teased dad right back.  Before he left, he said he hoped to come back because dad was so much fun.

About an hour later, a very nice man knocked on the door with a delivery of equipment for us.  A wheelchair and other equipment was brought so that we have what we need to keep dad safe. 

Less than 24 hours after our first visit, we feel very taken care of.  Dad will remain at home and get incredible care.  I'm grateful for these amazing men and women who are so thoughtful and so kind.  They made dad feel at ease and still in charge of everything going on.  And best of all -- I feel confident that both mom and dad are going to get the support they need during this difficult time. 

Thank you all so much for your love, prayers, and support.  Dad loves visitors.  If you have a few moments and want to come by - we would love to see you.

Amy

Tuesday, December 6, 2011

Current Update

To all of our friends and family, I would like to thank you personally for your continued prayers, calls, notes, emails and support for our family. We have also been blessed with such good physical and occupational therapists that have been able to come to our home and help with David - especially teaching us about equipment we had no idea existed that would help David be so much safer. And thanks to Amy and her generosity, we now have that equipment for him and it all has made a difference!!
The past few days have been especially difficult for us. David has been falling on a regular basis the last few weeks and we have been trying to not only prevent those falls, but hoping to also prevent any serious damage to himself if he does fall. Sunday was a very difficult day. Amy, Abbie and I took David to Church, but he was extremely weak and it was only through the 3 of us holding him up that we got him and out.
But yesterday, while I was getting ready for work, David took a bad fall trying to go to the bathroom. He cut his head on a chair in front of the sink and fell flat on his back and cracked a hole in the bathroom cabinet door. Amy was able to get him up enough to get him into the chair. The cut was pretty superficial, but the bump left quite a knot on the back of his head. We had his primary care doctor check it out and he was cleared of any stitches or serious damage. Later that day he fell again, but last night David had another stroke that nearly paralyzed his right side. He was unable to speak clearly, use his right arm and he could barely drag his right foot. It was a scary thing to watch for Amy and myself. I could tell David was trying to fight through it, but there wasn't much he could do. He is unable to walk at all without help and it takes both of us to get him to the bathroom. This morning, he is speaking a little better and seems a little stronger, but not much.
Needless to say, he is now pretty much bedridden and after talking to his oncologist this morning, David will now be put on hospice care - which is a good thing in that it will open up a lot of services that will help us take better care of him. Of course, the bad thing is that chemotherapy and any other cancer treatments will not be continued and the disease will be left to run its course. The ironic thing is that the doctors don't believe the cancer is causing the strokes - it has been stable since the surgery/radiation treatments last Spring.
So that is the status as of today. David is not in any physical pain, which is such a blessing, and I'm not sure he understands all that is going on because of the questions he keeps asking, but we are trying to keep him safe and keep him comfortable. Please remember him in your thoughts and prayers. We truly do feel your support.
Love to all of you...
Janis

Tuesday, November 15, 2011

The Big Guns

Mom, Dad and I got to hang out at the Huntsman Cancer Center today.  Dad had his regularly scheduled MRI and visit with Dr. Coleman et al.  It was a long anticipated visit for us... and a long visit overall.

Halloween Eve Dinner
Over the last little while Dad has been loosing functioning- especially with coordination, strength and balance.  He has fallen just about every day, multiple times a day.  We've had some near misses between Dad's head and the corners of furniture, which keeps us all on constant watch of Dad's movements.  Dad's a big, tall, solid guy and it takes a lot of effort to get him back to his feet.  The right side of Dad's body has little strength which complicates the whole getting up off the floor process.  It is very scary to me when he falls, and heartbreaking to struggle with him to get him back up. 

So, with that in mind, we went to the Doctors today searching for answers and help.  This is what we got:

- There is virtually no change in the MRI images.  Dr. Coleman noted that the angles were slightly off and so a bit hard to compare, but overall he didn't see any MAJOR changes.
- Upon further questioning, he did say, "Well you might be able to argue that this area is a little more dense."  Or "This area back here is slightly brighter."
- Dad's symptoms (lack of coordination, strength etc.) maybe be due this "possible" denser area or due to residual permanent side effects from radiation and surgery
Dr. Coleman pulled out The Big Guns and recommended that Dad start treatments of avasitn.  If you recall, Dad was on a double blind study related to avastin.  After the stroke they pulled him off the study to see what treatment he was having.  The concern then was that Avastin is known to cause strokes.  We found out that Dad was not on Avastin.  Dr. Coleman was relieved because that gave him another weapon to attack the Deathstar with later down the road.... and it looks like we've come to that point.  We've been told from day one that Avastin is the heavy hitter, the last resort.  I think the three of us were a little shocked that even though there were no major changes in the MRI, that Dr. Coleman would recomend Avastin.

Dr. Coleman explained that if these symptoms are being caused by the tumor and swelling of the brain, we would see at least a leveling off of loss of function, and some improvement.  "How fast?" I asked.  He said that some of his patients see improvement within days, some within weeks, and for sure by his next visit in a month.  If they are due to permanent damage to the brain from surgery and radiation then the Avastin would have no effect.

I'm thinking of it in terms of a preemptive strike against a possible rapid recurrence.

Starting Friday Dad gets to go every two weeks for infusions again. I guess it's a good thing that Mom and Dad moved to an apartment just down the road from the Cancer Center last week.  Dad will also continue on the 5 day a month chemo treatment.  Now that Dad has stopped working (that happened officially a few weeks ago) he's eligible for home health care.  We are looking forward to some added aid and therapy for Dad. 

We are giving our all to fight for life and to improve quality of life for Dad.   We thank you for all the help and support you each have given in the way that is possible for you.  We truly appreciate it and ask for continued prayers, well wishes, and good thoughts sent Dad's way.  We could all use them!

Tuesday, October 18, 2011

Good News!

Since I was home for the week, I was able to accompany mom and dad for his monthly MRI and doctor visit at Huntsman Cancer Institute.  I hadn't been there since late May, and was greeted by several familiar faces.  The view of the valley up there is amazing!! 

Mom was really anxious to see how his brain looked after the scary strokes dad had about a month ago.  He's also had a rough couple of weeks where he took some pretty serious falls several days in a row.  Dad is pretty scrapped up and his muscles and joints hurt.  His balance is really suffering.

Dr. Coleman showed us the MRI after the stroke and the one taken today side by side.  The area where the stroke was is nearly back to normal.  The brightness seems to have decreased significantly!  Good news!  Also the area with cancer seems to be quite stable with no new growth and even some decrease of brightness in some areas!  More good news!!  Brain swelling doesn't show up on an MRI, and Dr. Coleman alluded that might the cause of his loss of balance and strength on his right side.  Dad was prescribed a new steroid that should help if that is the case.  He will go back in another month for another follow-up MRI.  If that one is also stable, we will try go 2 months until the next one.  Good news all the way around!

Dad seems to be in good spirits though he has very limited energy.    Just taking a shower and getting ready in the morning wipes him out.  He needs a nap afterwards.  We're working on strengthening his right side and his endurance.  Hopefully, with a little more cooperation (hint, hint dad) we can make some more small improvements.  He does seem to lose track of time and days of the week.  He is also having a hard time navigating around the computer and his phone.  When you get an extra phone call from him, just smile and tell him you love him! 

I'm enjoying being back in Utah with the family.  Lincoln, Sawyer, Crew, and Hudson came to visit on Sunday night and brought their parents!  I love my nephews!! We had a great time playing and I am the proud owner of two Star Wars trading cards. 

Thank you for all of your continued prayers and support.  We appreciate and need them. 
Love to you all,
Amy

Sunday, October 9, 2011

Daily Life

It's been almost a month since our last update and so I thought I'd post a few pictures of Dad from this weekend and let you all know how he's doing and what life is now like.

Lincoln (Dad's oldest grandson) was visiting yesterday and to entertain himself while Rob, Mom and I talked he took pictures around the house.  He snapped this one that I thought captured a piece of Dad's daily life.  Ever since the strokes last month, Dad has been exhausted.  It takes a lot of energy from him to do the smallest tasks, so he sleeps a lot.  Here he is in his recliner in his bedroom.  What you can't see, is the TV.  Dad is obsessed with watching NCIS.  Last weekend Mom bought him the first two seasons on DVD.  He's spent the last week watching those.  Yesterday he asked me to start them over.  It might be time to invest in the next season. Or introduce Dad to a new show, any suggestions?  This week he branched out and watched The Lion King.  Dad saw a commercial for it a few weeks ago and has been obsessed with watching it.  When it was re-released this week, Mom picked it up so Dad could finally see it.

Dad has lost most of the strength, coordination and vision on his right side.  We are working with him to choose to use his left side.  As you can imagine, if you've lived 61 years as a right handed person, suddenly switching to using your left doesn't come easy.  But after a few falls this week, I think he's realizing it's a necessity. 
Today Dad made it to church!  On the days he feels able he tries to get up and move.  He's made it into work for a few hours most days each week.  It takes a lot of energy from him and my mom (she's a saint) to get him up and going each morning.  Thankfully Uncle Russ lets him come over and take a nap at his house before going to work, that way Mom still gets to keep her job.  And thankfully, the JCC still welcomes Dad to work everyday with open arms.

Next month Mom and Dad are moving to a one level apartment near Mom and Dad's work.  This will alleviate the stressful mornings and the falling hazard of the stairs in my parents house. 

Dad's a trooper and a fighter.  We are grateful to all who help out in whatever ways they can, including all your good thoughts and prayers on Dad's behalf.   He gets to have an MRI and meet with Dr. Coleman in a little over a week.  We'll update again then.

Wednesday, September 14, 2011

Avastin it is NOT!



This picture was taken almost 3 years ago this coming Thanksgiving!! Those little boys are 3 years old now - and just as cute!!

Well, David was not on Avastin for the study - which is a very good thing. Avastin is considered the "big gun" when it comes to a reoccurrence of brain cancer and right now it can only be prescribed when there is a reoccurrence. The study he was on was to determine how effective Avastin was at the onset of brain cancer, but, we won't be a part of that study now, but the doctor can now prescribe Avastin if there is an occurrence - and the doctor was very happy about that. But what about the cause of the strokes? Who knows? But all we can do is treat those things that cause strokes like keeping the blood pressure down, taking a cholesterol reducing medicine, and taking an aspirin a day and hope for the best. He will continue to do a 5-day chemotherapy treatment every 28 days and so far, it looks like it has been successful.


Unfortunately, David took a bad fall last night and almost had another one this morning. He is very unstable and his right leg just doesn't want to work or support him. He cannot walk without someone helping him and he's pretty scary on the stairs!!! I really worry about him and I'm not quite strong enough to hold him up when he's going down, so we're trying to be very slow and careful. He's probably safer with Russell than with me!!!


David will have another MRI in a month and until then, we just watch closely and hope and pray he will improve with no more seizures and no more strokes - your prayers and good wishes would be much appreciated in that direction. We have a long way to go.


With love and gratitude,


Janis

Monday, September 12, 2011

Home and an Update

Well, we finally came home Friday evening and we were both very glad to be home. I think a hospital is where you find out what's wrong and then go home to cure it - there is no rest for anyone in a hospital!
Dr. Colman came in to see us a few hours before we finally left. Yes, David had another stroke on Thursday per the MRI results. We find out tomorrow, Tuesday, if he was on the Avastin or not and then Dr. Colman will decide on further treatment. If he was NOT on Avastin, then we have another problem to deal with but they did not find any other clots in his body, so we were happy about that.
David is very weak and very tired. His vision is almost gone on the right side so he is bumping his way around now! He is not very stable but is using a cane and Aunt Chris' walker which I think will be of great help to him. Whether he will be able to go back to work full-time is a decision we will make in a few days or weeks if he can get stronger. He can't be left alone now and needs to have someone to walk with him all the time. I'm not sure his crew at the JCC is up to being with him constantly!!! He can be pretty demanding some times!! But I'm sure they know that. Finger foods are the options for eating now and that's fine with me!!!
We hope David will get stronger and be able to get around better in time. Right now, he is being "babysat" by his brother, Russ, during the day so I can go back to work, and he is VERY happy about that. I'm not sure how Russ will feel about this after a few days, but right now I am very, very grateful for his offer to help and sit with David during the day. Hopefully, next week David will be a little stronger.
Our home is for sale and we have had an offer, so we might be moving to an apartment in the next few months if the offer goes through. We will be moving into Mike's new house in Lindon in the spring when it is ready, but an apartment would be great to be in for the time being. I'm packing a few boxes every day and getting things ready to move. It is liberating to throw so much stuff away!!!
Thank you for your kind words and your prayers. They are needed and felt by all of us.
We'll update again after tomorrow.
Love,
Janis

Friday, September 9, 2011

Home

Just got a text from Mom - They are leaving the hospital!!!!!

Friday's Info

New text from Mom:

David did have another stroke yesterday afternoon per the MRI results.  He is very tired today but very coherent and responsive which is very very good news! Again we have been told that we will be going home this afternoon with a lot of new medications, so I'll let you know when we ACTUALLY leave the hospital.  We just want to go home - I'm sure our grass is probably dead by now! 

Thursday, September 8, 2011

Can't Catch a Break

Latest info from Mom:

David has possibly had another stroke - just as we were getting ready to leave.  It may also just be a reaction to the anti-seizure medication but he has been on that before and had no problem.  So they are doing another MRI to check the brain again.  No anniversary dinner tonight!.  39 years today. . .  Anyway we probably will not be going home tonight.  He also has a severe headache so they will be keeping him for observation for a few hours.  He is a little more coherent now but very tired and weak.

Doesn't seem we can catch any kind of break this week!

Afternoon Update

Another text from Mom:

We will be going home after one more CT scan - hopefully around 3.  David will be using a cane and cannot walk without someone with him.  He is in good spirits and anxious to get back to work. 

Happy 39th Anniversary Mom & Dad!!!!!


Wednesday, September 7, 2011

Dr. Coleman

Just got a text from Mom -

Dr. Coleman just came in and here is the diagnosis:  A seizure, a few mini strokes, no new cancer growth.  The study Dad has been on is now ended until they know if he was on the avastin or not and if he is they will stop the drug.  Avastin causes strokes.  (We didn't know that).  He will be in the hospital another day or two depending on obtaining further test results.  Depending on that and how he responds he will either go home or to a rehab facility for a few days.

Finally!! some news and direction.  David is able to see now but is still not able to get around too well, but now we have some help!! Thanks for your prayers.

** I talked to mom and got some further info.  They are going to rule out other causes of his stroke before they determine if he can stay on Avastin or not***

Morning update

I've gotten several emails and facebook posts asking about Dad.  I talked to Mom a little bit ago and she said that when she got there this morning Dad was looking almost normal, feeding himself, less droopy smile and his sight was much better.  They still have not seen Dr. Coleman yet, but she's hoping to know more when the neurosurgery team comes for their morning rounds.  If we learn more, someone will post!

Melody

Tuesday, September 6, 2011

Quick Update

Mike and Rob spent the day at the hospital with Mom and Dad.  It was mostly a waiting game.  We have no definite answers yet.  Dad was sent over to the Moran Eye Center.  I wasn't there, so I don't have many details.  When I have them we'll up date.  We are still waiting for contact with Dr. Coleman (Dad's neuro-oncologist).

Andy offered to take the night shift at the hospital so Mom could go home and get some good sleep.  I just sent Andy a text asking for an update and his reply gives us all hope,

"He's doing better.  Eye sight is back... still not sharp but he can see me and Mom.  No Dr. Coleman yet."

We are grateful for you thoughts and prayers... they are always answered!

Set Back

After going so long with good news, I hate to report that Dad is facing a set back.  I just spent the night with Mom and Dad in the ER at University of Utah hospital.  Dad had a series of falls outside in the garden yesterday afternoon, and after mom finally got him all cleaned up and resting in his chair, she took a second look at his face (which as scraped up) and noticed he was no longer able to focus his eyes or see anything.  She took him up to the ER where I met with them a few hours later.

They did a CT scan, with no obvious signs of stroke.  Then an MRI, which we were finally told showed something new on the right side of his brain.  They were unable to tell if it was a recurrence (new growth from the tumor) or if it was a stroke.  They said if it was a stroke it looked like it was from a few days ago.  They were leaving it up to Dr. Coleman to determine how to move forward.  We don't know when Dad will be able to see him, we are hoping sometime early this morning.

It is not a comforting feeling to walk into an ER, and realize your Dad can no longer see you.  We have no indication if Dad will regain his sight.  We ask for any and all prayers, good wishes and thoughts on his behalf.  




Thursday, August 18, 2011

VERY GOOD NEWS!!

This is David and I when we spent the weekend at Russ and Chris' cabin a few weeks ago. We had a great time and so much appreciate being able to get away for a day. Thank you Russ and Chris!
Now for the good news. Today Abbie, David and I met with Dr. Colman, the oncologist, after having another MRI done last night. The news is: NO NEW GROWTH and even some reduction in the size of the tumor! David is on a blind study with the cancer drug Avastin which has been shown to be extremely effective in battling brain cancer. No one knows for sure if he is getting the drug or not, but today, the Doctor hinted that David must be on the drug because of the good results of the MRI. There will be another MRI in 1 month to make sure everything is going in the right direction and then hopefully we can go every 2 months for follow ups!!
David continues to work full time - which is amazing to everyone at the Cancer Institute. He works at the Temple most Friday nights when he isn't on chemo. He gets tired easily and takes naps quite frequently. He hopes to begin occupational therapy in the next few weeks and hopes it will help strengthen his right side and vision. He has 2 great hopes right now: 1) Go on a hike in the Uintas before the summer is over, and, 2) work with Mike, our son, on the new home he is building. The hike might be a little strenuous for him, but it looks right now like he might be able to do both!!!
We thank you all for your prayers, your good thoughts and wishes and your help as we continue to battle this Deathstar. Right now, it has pretty much been temporarily disabled - we just want to keep it that way!
We love you all and express our deepest appreciation
Janis.




Friday, August 12, 2011

My summer visit


Dad - irritated at the beeping & lack of diet coke in the infusion room
Well my summer visit is almost over.  Thursday was my last visit to the Huntsman for awhile, but Dad will have to keep going.  He had an infusion on Thursday and I wouldn't let Dad have his morning Diet Coke.  I did give in after the I.V. was started and ran up to the 5th floor and got him one.  I will miss seeing all of Dad's doctors, nurses, and PA's every month.  I will not miss the MRI days - because Dad hates them.  I didn't mind going up to HCI with Dad - I got lots of reading and sewing done.  I got to listen to Dad sing along with the songs I put on his iPod (He's good at Surfing USA and Wake Up Little Suzie)  and I got to spend a little time with Dad - even if all the beeping in the infusion room drives him nuts!  I love you Dad! 
Love,
Mel

Dad has another MRI and an appointment with Dr. Coleman this week.  Stay tune for details!

Friday, July 22, 2011

STABLE

That was the positive word of the day.



Dad's high school graduation
Marina High School
 After Dad's "inconclusive" MRI a few weeks ago, Dr. Coleman ordered some other tests and another series of MRI's to determine what exactly is happening to the Deathstar. 

First up was a PET scan.  The PET scan measures and determines the activity level of the brain tissue.  Active tissue shows up bright yellow.  The margins around the cavity where the tumor was removed showed up yellow, along with a little spot on the opposite of the brain.  In the final report from the technicians they determined that to be active tumor tissue.

Second, was a series of MRI tests which Dad did on Monday.  Not only did they do a regular MRI, but they also did a Spectroscopy MRI and a Profusion MRI.  The Spectroscopy measures the chemical composition of the tissue and the Profusion measures blood flow to the tissues.  The Technicians determined that there is nothing in the MRI results to suggest rapid new growth or an increase in concern.  They also said the results were consistent with necrosis, not new growth.

The two tests (MRI and PET scan) seem to be contradicting each other.  However, Dr. Coleman said that is actually really common.  He pulled up on the computer screen the "inconclusive" MRI from June and the one taken on Monday.  He went through them with us, comparing the two images.  And determined that combined with the PET scan he believes there is no evidence of new growth, that the tumor is STABLE.  That is the best news we could receive.  They will be watching more closely than we were originally told and will do another round of MRI's in the middle of August.

Dad has been experiencing some of the symptoms he had before surgery.  Sometimes the right side of his face droops.  He's bumping into things on that side again.  He doesn't feel as stable.  And he's also having a hard time staying asleep at night.  I have noticed a big difference in his symptoms when he actually gets good sleep, so the doctor gave him some medicine to help him stay asleep, and also suggested some melatonin.  They are putting Dad back on the anti seizure med to hopefully relieve some of the other symptoms.

Dad starts his 5 days of chemo, with a higher dose than last time in a few days.  When he's on the chemo he is extremely tired and doesn't eat much.  We feel that's a real blessing compared to what others go through when taking chemo.

When I think of the tumor being stable I see this image...

A good portion (in our case the majority) of the Deathstar has been destroyed, and treatments have been effective in preventing it from rebuilding!

Note from Dad:
Hello all of you blog followers, all of you friends and relatives. Abbie is just reporting on the latest update on my situation.  It is such good news we are pleased with the report!  I want to express my Thanks to each of you for your prayers on my behalf and the family.  And thanks for all the thoughts and kind words of encouragement THAT YOU HAVE EXPRESSED TO ME PERSONALLY.  It all makes a big difference.  It is hard to explain the feeling of knowing that so many people are pulling for you; it is a feeling of support that transfers to me as I have gone through this ordeal and is a real power that we can feel.  I express from the bottom of my heart my love to each of you.
Thank you all,
Dave

Thursday, June 30, 2011

Our Day At the HCI

I want a nap and I didn't have to do anything! 

We spent pretty much all day at the Huntsman Cancer Institute.  Today Dad had a few things going on.  First, early this morning Dad had his base MRI.  This is the MRI that will give us the base reading for further treatment.  All other MRI's will be compared to this one in order to determine any further cancer growth in his brain.  That took about an hour.  Then we headed off to Dr. Coleman's office.  We met with his PA and then Dr. Coleman.  The MRI hadn't been read by the technician yet, but Dr. Coleman had a few minutes to look at it.  A majority of the swelling in the brain was gone.  There were still some bright spots, but it is too soon to know exactly what those bright spots are.  They could be leftover damage from the surgery, radiation damage, cancer cells that are dying or new growth.  There was definitely less bright spots than his previous MRI.  Dr. Coleman thought that some of the spots were damage from the surgery that have contracted as the swelling has gone down.  There was a bright spot that wasn't in the previous MRI on the opposite side of Dad's brain, but the same possibilities of radiation damage, etc.  . apply to that new spot.  Treatment will continue as planned.  Today Dad starts his 5 day Chemo treatment.  It is a higher dosage than he took during radiation, but he only takes it for 5 days.  Hopefully he will tolerate it as well as he did the radiation and chemo combination.  He will have a chemo treatment every 28 days.  We have another MRI in about 3 weeks along with some other tests that Dr. Coleman hopes will help him determine exactly what some of those bright spots are. 

Next we went off to the infusion lab, where Dad gets the medication that is part of the study he joined.  It takes about 1 1/2 hrs from the time they bring him in to when they are finished.  The actual administration takes about 45-50 minutes.  He will continue this every two weeks - along with MRI's at specific times for the study. 

From the first time we saw Dr. Coleman (I forgot to take any pictures today)
All in all it was a good day - no major changes to treatment for the near future and we will see Dr. Coleman again in a few weeks. 

Friday, June 3, 2011

Mile Stone Reached


Don't be scared.  That's just a picture of Dad wearing his radiation mask.  I took this picture of him wearing it last night at home, which means..... Dad is done with radiation!!!!!!


See here's his certificate

Dad received a total of 6000cGY (centi-gray) over a period of 30 treatments.  Dad wore the mask every time.  The mask clipped onto the board, keeping Dad's head still and in the same position so the radiation gun would hit its seven targets on the frontal lobe.  Dad only had some minor side effects like loosing his hair, and some burns on his skin.  And then of course there was the exhaustion.  However Dad still worked almost everyday of his treatment.  He's a trooper. 

Dad truly gets to recover now.  He is off Chemo and Radiation for a month.  He'll get an MRI done on June 30th and then meet with Doctor Colman, his neuro-oncologist to hear the status of the deathstar and what the next steps in treatment will be.  We pray that this step of treatment was effective.

Saturday, May 28, 2011

Half Hawk or Back Hawk?

There's a trend among little boys (and adult boys too I suppose)... the Faux Hawk.  While I know Dad isn't sporting a Faux Hawk, I do believe he's sporting some sort of 'Hawk'.  A Half Hawk? A Back Hawk?  I'm not sure.  If it grew longer I might call it a mullet.  What should we name it?


It seemed really sudden when Dad lost his hair.  I think mostly because he still has his "Downy feathers" as I like to say. He's only kept his "contour feathers" on this patch in the back.  I didn't notice until one day riding in the back seat of the car on the way home from work. The radiation gun shoots on the left side of his head and then exits on the right side, leaving the very back virtually untouched.   We keep saying we'll take him in to get his head shaved, but I think he's starting a new hair trend! 

Thursday, May 26, 2011

I guess this means progress??







Amy left today to go home to Renton, Washington. I guess that means progress right? David is able to do pretty much anything he wants to now (except drive), Abbie gets her car back tomorrow, the last radiation/chemo treatment is next Thursday and every one's schedules are pretty much back to normal. So I guess its time for Amy to go back home, but boy, will we miss her. Let me list some of the things she has done while she has been home helping us through David's surgery:



My basement was painted (with Abbie, Andy and Mike's help)

We have 2 new flat screen TVs

My house has been set up for wireless Internet

We have cable TV now with ON DEMAND - which is the best!!

My garage floor is empty and most of the junk in my garage is gone (great garage sale $700+)


My downstairs bathrooms is completely renovated (with Abbie's design and hard work)

She organized a family BBQ when Melody was here!!! ALL OF THE FAMILY TOGETHER!!! It was the best! She did the cooking, had matching table cloths, napkins, bubbles for the little boys and delicious hamburgers for the rest of us. That day was very special to me.

The toys are organized

The books shelves are organized

The DVDs/CDs/video tapes are organized

Not to mention her numerous trips to take David to the doctors and wait hours and hours with him

She has cooked for us several times a week - which is so helpful to me

She has comforted me and helped me not to cry and to carry on

She has patiently helped David with his physical therapy - when he wanted to do it

Because of Amy and Abbie, I have been able to keep my job. Without them and their assistance, I would have had to quit working to take care of David.

She walks into the house looks around and just knows what to do - whether to pick up, whether to start dinner or whether to just sit down and relax.

And her faith, her happy disposition, her determination and her love for her family have kept us all in good spirits and given us the courage to keep going.



She now goes back to work and the next 4 months will be the busiest for her at her job, so she's not even going home to rest!! Melody will be coming for the summer when she is out of school up there, which will be good for us because Abbie will be living off and on up in Eden while she directs an outdoor school program/camp for children during the summer.


My mother always told me that daughters turn out to be mothers' best friends and she is right. My girls are my best friends. I love them all very much and Amy will leave a BIG hole here at home. Thank you, Amy, for all you have done for us. I don't know what I can do to show you how much I appreciate your love and support. We will ALL miss you! Come home again soon, okay?

Tuesday, May 17, 2011

Family Time



This past weekend Mel flew in for a quick weekend visit, so we decided to have a Family BBQ.  Amy really wanted a BBQ, so this was her excuse to buy one.  And we're glad she did!  The wind tried to deter us, but we ate outside anyways.  Dad's favorite dish is hamburgers with beans, so that's what we ate (plus some yummy grilled squash and Rob's amazing rainbow jello salad).  The grand kids played for hours (I'm not sure they even stopped to eat) and the rest of us talked and laughed.  Family Time is the best kind of time!

Dad is pretty tough.  He's just now starting to loose some hair and feel some tenderness on the left side of his head.  He's been putting in full days at work for three weeks now.  I'm amazed at how much he continues to do.  On Saturday he did some mowing, helped Mom and I plant the rest of the garden, plus started a full blown war against the wasps that have been hanging around.  He is feeling fatigued by the time he gets home each day, but continues to get up the next morning and continue on.  We are thankful that he is able to do many of the things he wants to do.

Wednesday, May 11, 2011

Half Way

Today marked half way through dad's radiation treatment.  I'm amazed how much well he's holding up.  His scar is almost completely healed, and his balance is getting better everyday.  He's been going to work daily for almost two weeks and is keeping up with things around the house.  He mowed the lawn last week, though it completely wiped him out.  Tomorrow we meet with all of dad's doctors and he also starts his second research study. 

We thank you for all of your continued thoughts and prayers.  We appreciate it more than you know. 

Monday, May 2, 2011

My Mom

Mom Reading to Daniel
Today is my mom's birthday.  And so I beg your indulgence as I write a post about my mom on the blog devoted to my dad.

My mom is the most amazing woman I know and I learned many amazing things from her.  Little known facts about my mom:
1.  She won several awards for her creative writing in middle and high school.  I won an award for a story she helped me write in grade school.  She did all the story telling... I just wrote it down.

2.  She is an amazing cook, even though when asked, she will say she hates cooking.  She always told me people think she's a good cook because she doesn't waste her time with recipes that aren't amazingly delicious.

3.  My mom knows more music than I ever will.  All of us (her children) gained a love and appreciate of a variety of music from her.  I can still picture sitting in the back seat seat of the van as a child and watching my mom sing every word of "Rock of Ages" by Def Leppard.  "You Betcha!"

4.  Mom is extremely talented with fabric.  She makes the most amazing quilts I have ever seen.  She also does some of the most beautiful hand applique work I have ever seen.  She was invited to be a member of a prestigious applique guild here in Salt Lake.

5.  Driving is one my mom's favorite things to do. 

6.  Mom was the first in our family to battle cancer.  This year marks her 3rd year after breast cancer.  I asked her today what one of her best accomplishments has been.  She responded "I'm still alive."  Many of you know she has her own set of health issues to deal with, as she said today, "My body keeps trying to kill itself off but I just won't let it."  My dad's fight with cancer has been made less scary because of my mom's past experiences. 

7.  Mom's favorite TV show is Law & Order: Criminal Intent.  She was SO glad when Vincent D'Onofrio returned. 

8.  Mom has more faith than anyone I know of.  Anyone.  She admits to not knowing or understanding everything.  She admits to struggling.  Yet, she is devoted to the Lord and will always do whatever is asked of her.  Robert summed it up best once.  When my dad and brothers were moving Melody and I to Seattle, we drove a WAY overpacked trailer with tire problems from Southern California to Seattle, WA avoiding what could have been some serious problems.  Rob said after arriving, "You know we only made it because mom was praying every minute for our safety, right?"  Exactly right. 

9.  Mom played guitar and organ in a band in high school.  She since taught most of us to play guitar and both Mike and Rob played in bands in high school. 

10.  She is devoted to her grandsons and would do anything for them. 

I love the picture above of my mom reading to Daniel.  I love it because of the way Daniel stares at her, not at the book.  Those around her know of her goodness and stare in awe.  As I get older, I come to appreciate more and more the things my mom taught me and did for me growing up.  She truly is my best friend.  I love you, mom.

Amy

Wednesday, April 27, 2011

Understanding

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.
Janis

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.



Janis

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.

Janis

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

Almost...almost...almost...


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.

Janis

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

Therapies

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!