Confirmed dates!

This is what is confirmed on Mom and Dad's calendar in the kitchen.


December 26th-28th: Michael and Adrienne staying in a condo. Bob and Gesse will also be at the condo .

December 27th-30th: Carol and Terry and family. Staying with Mom and Dad .

December 29th-January 7th: Judy and Steve will be staying with Mom and Dad. Sounds like you will have Mom and Dad for New Year's Eve! Party!!!!

January 5th-7th or 8th: Charity and Adam, they will be staying ???

January 6th (about 1 in the morning)-8th: Pam and Ed will be staying with Mom and Dad.

January 8th: Gesse returns.

January 12th-15th: Mike and Lori,  staying in a hotel?

As you are making your trips to and from if you have any room for me to send a box or 2 it would help me alot! ( bedding, clothes and we won't even mention my shoes!)

Thanks every one!!

 It was my turn on the couch last night . Dad slept very well,  so well in fact, that he turned by himself in the middle of night.  I put a pillow under his shoulders to help steady him. This morning he sat up and wanted to wash his own face and shave himself ! Mom and I were shocked! 


Jon Ward came over again to help get Dad into the car. They really do have amazing neighbors. We gave dad his first pain lollipop  this morning. He does not like them at all! So we will just keep giving him his Lortab! Both him and mom took a nap this afternoon. 


When Matt, the physical therapist, came today Dad was actually happy to see him! I think it is because he reminds him of Chris Desmond . He has a very calming, quiet and caring manner with Dad. He was able to get him to walk about 6 feet in his walker!!! This in itself is a miracle!!!
Today was a good day!


Gesse

UPDATE!

Sorry this is a little delayed...things got a little crazy here.  -Angela
Here is the update from my mom....

Dad had radiation again today.  John Ward the fireman in the ward came by to help lift him into the car for the appointment.  Upon our return, he came over to lift him out of the car.  It was extremely helpful and neighbors have been very involved.  He finished radiation without any pain meds and seems to have handled it very well.  When he went to PT, he surprised everyone with his strength!  Way to go, Dad!

  The entire neighborhood is really showing just how loved and adored he is, as he frequently gets visitors ever day! (Probably 3-4 each day!) The Bishop came by to give him sacrament and now that the older kids are coming home for the holidays they are coming over to visit him as well.  I even snuck him his candy jar so that he could still give the kids candies.  He was pretty happy with that.

His eating is still improving.  Every once in a while I will sneak him a little chip with some lemon on it and he gives me knuckle bumps!  I am really enjoying the time I am getting to spend here and listening to Mom and Dad share stories.

I will keep you posted as more things happen.  I hope everyone is enjoying getting ready for Christmas this year and the time we have to focus on our blessings.

Much love to everyone,
Gesse

Hello Family.....

Dad is home now, and while he is still having hallucinations, he is becoming less confused and is recognizing us.  He is doing great with quiet conversations with a small group of people.  He has difficulty mentally tracking when there are unexpected distractions.

The blog spot is up and running to keep everyone in the loop on Dad's condition.  I had thought that we might use it to keep track of visits being planned by everyone who wants to spend time with Dad.  However, it is difficult for a few reasons; some are using Facebook to communicate with each other, some are trying to use the blog, Mom can't use either one AND it is hard for me to be near the computer much throughout the day.  So...........

I have created a calendar spot in the kitchen where I will write down who will be visiting.  This way Mom and Dad can also see details on who is planning to visit and when they will be there.  In an attempt to keep things straight and simple, would all of you mind coordinating your visits through just me?  We can do this through calling, texting and emailing.  801.631.8700 or gessebarnett@msn.com

A friend of mine lives in St. George and I will be able to stay at her house while family is visiting.  This will free up both the bedrooms at Mom and Dad's for those coming to see and help take care of Dad.  Hospice/home health is coming in and assisting with Dad's personal care, but there is still much to be done throughout the day.

Bob and I are trying to close up the house in Farmington for the possibility of having renters.  I will be there this week doing a bunch of stuff, but I will also need to come back for another week very soon.  Please let me know if anyone is planning to visit soon and could possibly help during this time.

My love to all of you,

Gesse

Saturday Update!

HE IS HOME!!!!!

When we went to get Dad today he was very confuse and in pain. We think that it was from the stress of knowing there would be a change today. It has to be scary as well as exciting to go home for him. But we got him home. Bob and Gesse are here. We have all been trained in giving him his medication including a shot, how to handle him, his, catheter, wheelchair, etc… Bob and Gessse have been out getting his new meds and food for the house, running errands so everything is ready here. They got mom the ingredients she needs to make her applesauce cakes to keep her busy. I have been organizing a list of Doctors and meds that we will put up on a central communications board so everyone can have the info when they come to help out here. Dad had been sleeping and watching his very own big TV. He is relaxed and calm. Happy to be home. We are happy to have him Home!
-Kathy


So far for the Calendar we have...


December 26-29 Michael and Adrienne and family.


January 6-8 (a weekend) Charity and Adam and family.


January 13-15 (a weekend) Lori and Mike and family.


Also,  Lori and Jenifer have started a book for grandpa that they would like to be able to read to  him soon.  Please submit some fun memories, stories and pictures to help beautify this special gift!  Submit them to Jenifer's email or post them in her Facebook message box.
Thank you!  Your time and effort put into this will be greatly appreciated by our sweet grandparents!

Days open for caring for Grandpa...

Bob and I are leaving for St Geroge On December 16th 2011. We will be there thru Christmas, so Grandpa and Grandma will not be alone for the holidays.

Kathy is flying home on Sunday December 18th to spend some much needed time with her family and be home for the holidays! Thank you Kathy for all you do for this family!!!!!

Michael and Adrienne will be in St. George December 26 thru the 29th.

Is anyone available to spend New Year's down there?????

Bob and I would like to return home December 28 or 29th. Bob needs to be back on Monday, January 2nd for work.

i would like to come home with him to start the process of moving to St. George.  I will live there to help care for Mom and Dad.  Ideally, I would like to have everything packed and in storage to return back to St. George.  

Can anyone make small visits in those first two weeks of the new year? 

I can go back and forth for a month and that would not be a problem.  Will everyone check their schedules and let me know?

Of course, things might change. If dad is not in a home yet, I am sure mom would be okay for a night or 2 alone.  I will be a better judge of that when I am actually down there. 

After the month of January it should be much easier for everyone, as I will be living down there and schedules will not need to be so urgent.

I will be needing to make a trip periodically for work and will try to arrange according to your needs.

Thank you all so much!  I know we don't express our love and appreciation for you all as frequently as we should, but know we truly love you.

Merry Christmas,

Gesse

From the beginning...

October, 2011

Dad was having a more difficult time breathing then usual and getting real tired.  The primary care doctor, Dr. Pendleton found two masses on Dads lungs.  He referred him to Pulmonary  specialist Dr. Klein.  Dr. Klein did a biopsy. Took out several mucus plugs but could not reach the tumors.  Dr.  Klein had hopes that the masses were abscesses after discovering the mucus plugs.  The first batch of test came back negative for cancer.   

Plan 2 was to do a more invasive biopsy.  They would have to collapse a lung. That could be very dangerous for Dad, So, there was a lot of hesitation.

The next CT scan showed the tumors had grown.

On Halloween, Dad bent over and did something to his back that caused great pain.

After a couple days. Mom took him to her Orthopedic Doctor, Dr. Smith.  The x-ray showed a compressed disk.  About the same time Dr. Klein (Pulminary Dr.)  trys to schedule a PET scan.  That would reveal  if the masses were cancer and if there was more as well as give the needed details about the back  situation.  The wait for approval begins.

In the meantime Dad is getting weaker and is not eating or drinking.  The pain is intense.  

The insurance company says no to the PET scan.

So they begin to talk about an invasive  Lung biopsy that would require collapsing Dads lung to get the biopsy.  This is a very dangerous procedure for Dad because of the emphysema.   In order to do the biopsy Dad would also have to go off his blood thinner and get his blood thickened up.

The Biopsy is scheduled for Tuesday the 6th. Dad is getting weaker, is still not eating or drinking, is still in intense pain.

In intense pain and with tremendous effort from Mom and Judy they get Dad to the scheduled Biopsy. Only to be sent home because his blood is not thin enough yet.  It is rescheduled for Thursday the 8^th.

Aunt Venetta and Uncle Johnny help Mom get Dad to the next scheduled Biopsy. By now he can hardly move. It takes over an hour to get him out to the car.  At the appointment his blood is still not thin enough. But they discover he has an infection in his blood.  They try to send him home again.  This time Aunt Venetta stands up to the doctor’s and insist they do something other then send him home in such pain to return to the whole ordeal once more to get the biopsy.  They do the MRI for his back, then send him home.  With no treatments, no solutions, no antibiotics.  Reschedule the biopsy for Monday the 12^th of December.

Saturday Dec. 10^th.  Dad has stayed in bed hardly moving, intense pain. Not eating. Not drinking.  He has lost a lot of weight.  Mom calls a neighbor who is an ER doctor and asks him to come take a look at dad.  Dr. Stan Benson.  Dr. Benson takes one look at dad and says you are going to he hospital right now.   They get a gurney because dad can not move on his own.  At the ER they immediately surround dad.  He is very dehydrated and anemic. They start rehydration and antibiotics. They put him in the ICU and begin CT scans.  The CT scans reveal tumors on his spine.  By Saturday evening they have rehydrated him enough that they move him to a regular room.   

They have increased his pain meds but he is still in pain.  He says it goes between a 7 and a 9.  He is still very weak and very tired but is unable to sleep and unable to eat. He is drinking sips of water often.  He is shaky, His legs are starting to feel tight and are beginning to swell.  He feels new pain across his abdomen.

Sunday, Dec 11^th -   Dad looks a little better today as he is rehydrating.  His pain is still around a 7.  They do more CT scans and find more Cancer.  They have now found Cancer on his adrenal glands, Liver, Lungs and spine.  The Cancer is the main cause of all his conditions.  The liver is not functioning properly so the blood is infected.  However they have a tumor now that is safer to biopsy.  They decide to biopsy the tumor on the adrenal gland on Monday.

With lack of sleep and eating combined with meds. Dad is seeing things like Christmas lights hanging in the room.  The smoke detector keeps moving in and out of the ceiling and shelves are moving around.   His dog Taffy appears in the TV and every time I move my computer Taffy turns into a cat.  He wonders how I am performing this magic trick for him.   The best one is he keeps looking under the sheets.  I assured him the parts God gave him are still there. He says “who would be playing a trick like this on me?  What is the trick we ask?  He makes mom come over and look at his catheter and says, “Look, Someone put a chicken bone in my catheter!”  

So many Visitors coming with love!  The ones that know he is hospitalized from the ward come before church. It is announced in church so many come after church.  They are waiting in line outside for their turn to come in and let Dad and mom know they love them.

Dr. Benson comes as a visitor as he has no authority outside of the ER.  We are on the greater side of confusion because different doctors are giving us different information and some are telling us nothing.     Dr. Bensen leaves and looks up Dads records. He takes me aside and tells me what is known. 

The doctors are 100% sure it is cancer 

They did find more cancer across the abdomen. His legs are tight and swollen because he has a blood clot that goes down most of his right leg.  A few more in his left leg.

He gently leads me to see if I can grasp the reality of the situation so I ask, Dad is not coming home for a long time or at all, is he ?  He shakes his head and seems relieved that I have grasped the reality of the situation.  He asks me about mom. He is concerned that she is in denial.  He offers to prescribe her something to relax and calm her.

Just in case these hallucinations are more then medications, They order a Head CT.

Then he writes it down as he explains to me what happens next to his knowledge from the records.

• They will give Dad Blood transfusion to thicken his blood. The new blood will quickly repair everything about his blood levels.  At least two units
• Dr. Olsen will biopsy the tumor from the adrenal gland on Monday.  They will probably also give him Vitamin K to help thicken the blood.  They want to do this as fast as possible so they can get the biopsy done and get his blood thin again to help the clotting as soon as possible.
• They have decided not to put the cement in the back because the tumor has wrapped itself around and weakened the spine to the point they are afraid the cement could push against his spinal cord and paralyze him.
• Will do a Head CT to make sure no cancer is in the brain.
• There is no reason to do a PET scan at this point because they know it is a fast growing cancer and they have a safe place to Biopsy.  What we really need to know is the type of cancer. That we will learn from the biopsy.  Also the PET scan is an outpatient only procedure.  They would have to check dad into a rehab then schedule the PET scan as an outpatient and bring him back. Plus the radioactive substance they inject as some bad side effects and has to be flown in from Washington in a protected way.
• We need to start thinking about sending Dad to a Rehab center as part of his treatment because mom alone can’t handle the heavy lifting and help that Dad will need. Unless if we have a “big Ole’ Tongan that can do that”  (I suggested we consult Aunt LaRue about that.) There is an option of home care/ Hospice.

  

If a Rehab is necessary Coral Dessert is chosen because it has a good rep and someone from the ward runs it.  But it is a more aggressive rehab. Dad does not need aggressive therapy.   

Dad is antsy and itchy from the pain meds.  They give him the Vitamin K and the first blood transfusions.

Monday

 Before we leave dad calls    Dr. Pendelton has visited and told him the cancer is terminal.  Says 3 to 6 months.  But Dad can’t remember everything that was said.  Why does a Doctor tell a patient something like that without any family there?

When we arrive, Kris Brown from Pallative care is talking to Dad . Dad has said - No to Chemo, Yes to DNR.  No heroic anything including antibiotics  when it gets to the end point  She talks a bit with us  about Dads wishes.  We asked Dad if he would rather go to a rehab center or go home.  He of course wants to go home from here. Her philosophy is let him go in dignity instead of pain.  Use pain management to keep him comfy as possible.  She tells the staff to not disturb him during the night. Let him try to sleep.  He has only had a cat nap here and there. He Keeps getting woken up every few minutes. So he still has not had any real sleep.

She had them change the pain med to dialanton or Hydromorophone or diloded. (Three names same med.)

They give him two more units of blood to prepare for biopsy

Around 1:30 He is taken in for  the biopsy.  Blood is finally thick enough.

After the biopsy,  He is teasing nursing staff.  The hallucinations have calmed down but not gone away.

Visitors   just keep coming, including the parents of  friends of mine from Monument.  Doyle and Kris Oakey sent Doyle’s parents in to see how we were doing.

And medical staff from other places like his transfusion center.

Dad and I have a Conversation where we make  a deal, Dad say’s he is not afraid of dying.  He knows mom will be along  later but he is concerned about the family. He has a beautiful family and does not want to see contention happen over dividing up his tools and things. I make a deal with him that I will make sure that does not happen if he tells Emily to visit her mom. Dad says he will try to get her a 10 day pass! And promised to give her and Michael both a big hug.  Mom says hug my parents as well and they talk briefly about seeing Dads parents as well.

 He Eats applesauce and Jello!  The first real food in a very long time!

The Oncologist came in and introduced himself to dad while we were not there.  Dr Tay.

Tuesday

Dad is looking better, more alert.  It is hard to make myself realize getting him better  does not mean he is getting better

Mom’s Sciatica is acting up so we take her to doctor Smith.  Dr Smith tells us Dads back could also easily break if he does not have the cement put in. We need to find how stable it is or is not. We agree to get Dr. Majors a back surgeon on board.  To help decide this

The Palliative care person ordered a pain med pump.  It pumps the Dilanton in every hour and Dad can pump a little bit more in each hour.  This will keep him much more comfortable and pain managed.    

It appears there are no hallucinations today and for the first time he says his pain is at about a 2.

This morning a PT try’s to set him in a chair for the first time  but Dad can’t do it.  In the afternoon they try again and he stays in the chair for about an hour with some  mild discomfort and  sleeps peacefully for first time.

After he naps he eats a half banana and an instant breakfast

You can see Dad coming back. He has been giving his nurse Alice a bad time all day. She threatens to give him a big shot in his fanny if he keeps it up.

We leave a little early because he is sleeping so peacefully.

Wednesday.

The oncologist called mom.  He said that depending on what kind of cancer the biopsy shows there is a new pill that can help with it. It could prolong his life.  But we have to wait for the Biopsy results.

When we get to the hospital Dad is in the shower.  He managed it well and was looking good.  He lays down exhausted and here comes PT.  He tells them he is “pooped”  she says she will take it easy on him but makes him sit up and do some exercises then stand up and sit down a couple times.  You can see the pain in his face.  But he is being a good patient and trying hard.  He takes his extra pump of pain meds.  Soon he begins itching all over which agitates him and he begins seeing things again.  The nurse says Dr. Pendleton says no Benadryl for the itching but he ordered  something  different that he can only have once a day and he already had it.  He just has to decide between the pain and the itching!   

After several minutes the itching subsides and Dad relaxes and  starts watching TV.  First time he has turned it on.   

He is still a bit disoriented and fidgety. And trys to stand up.  I stop him by strongly saying SIT!   He immediately stops and puts both hands up like dog paws and pants.  Then he sits on the side of the bed for a bit.

Dr. Pendleton comes in to tell us the biopsy results are back.  All he knows is that it is cancer. The biopsy will go to Salt Lake now and it will take a few more days before we know what kind.  But he says less then six months is what his thoughts are. But of course we still need more information on the type. They can not tell if the primary source is the lungs or the liver.  He will call Dr. Majors for the back consult but hints that he most likely will not want to do surgery. He orders the Benedryl and dad takes it.

The PT came back at 2:00 and Dad was still in pain and worn out. So it did not go real well. When PT finished dad fell right asleep but it was like watching them torture him.  They say it is needed to keep the back from getting stiff and worse. 

 It was frustrating because he had the menu in hand already to order real food for the first time.  That desire went away instantly with the PT work out!

Why this blog...

Hi friends and family,
   This blog is to keep everyone as constantly up to date on Grandpa's progress as possible!  Also,  it will help us organize visits, so that everyone gets an opportunity to spend some quality time with our dear Grandpa Barnett!  Right now, Kathy is staying with him and it sounds like he will be leaving the hospital on Friday.  Of course, as that changes, it will be updated here.  The official diagnosis is terminal cancer that has spread through his body, but has not affected his brain.  They are managing his pain and Grandma and Kathy are organizing with hospice services so that he can come home and be more comfortable.
  I think it is appropriate that this news comes to us during the Christmas season when we are reminded in everyday life of our Savior and the importance of His birth.  Grandpa understands the life and teachings of Jesus and loves the gospel and lives it to the fullest.  We can take comfort in Grandpa's faith.
  If you would like to post anything, please feel free to.
Love to all of you...