KRISTINA........"REMEMBER" (March 29th, 2013)

Kristi.......
This is a little different blog entry because I am writing to you my dear sister!  You are feeling weary and restless.  Constant nausea is so draining.  Not being able to eat to give you nutrition and energy is taking its toll.  You have now been back in the hospital for 19 days waiting on the Dr.'s to have understanding a plan for treatment.  Still no plan.  Still no relief!   Still not feeling well enough to enjoy doing anything while you wait to help pass the time.  Billy's job requires him work from noon to 11, or 12pm or maybe later.  You both are feeling the pain of your children almost having no parent at home since they only see Billy for a few minutes in the morning and on weekends.  While you are joyful and full of hope and patient most days, you are hurting and battle some discouragement right now.  You are  especially discouraged that it seems to take your Dr.'s sooo long to figure out how to treat you. You are weary of hospital surroundings, and beds, and food, and care.  You are so sad to miss another holiday with your kids. Remember... Your friends and family hurt with you and for you.

You have been here before.  Right after the surgery.  When you encountered your first setback with infection and a small bowel obstruction, and now again with this infection and possible fistula.  It is because of where you are and where you have been, that I wanted to encourage you to Remember a few things.  Things you have said at other moments that have helped you endure.  I wanted to write them here so in the days ahead that will also be hard, you can return here to your story.  The story you started to record in November of 2010.

You started this blog with the picture in your mind of the green meadows of our hometown of Meeker, Colorado.  The picture of this in your mind gave you peace and rest.  You had Psalm 23 in mind as our only TRUE rest is in Christ.  "You make me lie down in green meadows, You lead me beside the still waters.  YOU restore my soul; You lead me in the paths of righteousness FOR YOUR NAME'S SAKE." You have wanted all your suffering to glorify God's name sake.  You have wanted it to be about HIM!

Saint Augustine said "You have made us for yourself, O Lord, 

and our heart is restless until it rests in you."

REMEMBER: On these other occasions you have had these thoughts..... -Following surgery when you were in  terrible pain, struggling to breath,  lifeless from low blood pressure,  and feeling the mental and emotional  impact of what this surgery  permanently means for your life,  you reminded yourself of those  in the rooms next to you that  were being given no hope for a  future and no opportunity to  raise their children or love their spouse  or family or friends.  You thought of others in your Cancer Posse struggling to fight off cancer and live.  This gave you perspective and kept you battling.  - At other times, when you were soooooo weary  of being bedridden, you told us you had a new  understanding and compassion  toward those who were permanently  bedridden or paralyzed, and were grateful  you could move around and still had  a future of walking and moving.  This perspective brought THANKFULNESS  and kept you in the battle.  REMEMBER;   Corrie Ten Boom said "Look outward (at what the Dr.' aren't doing) and be distressed,  Look inward (at your own strength) and be depressed,  Look upward (at who God is) and be at rest".

REMEMBER some of what you wrote..... Here is what you wrote right before your surgery and miracle in June (2012). 

This morning we studied Jonah in community church and we learned 4 good lessons from his story.  I told the pastor afterwards I thought he was speaking directly to my row of weeping people. 

Lesson #1 : God's will is not always the same as my will!  (His is bigger and better.  His will is not to make sure we are happy, but it is to make sure we are more like Him. -  Jonah 1 & Romans 8:28-29a)
Lesson #2 : Being out of God's will is a dangerous place to be! (God will do what he must to bring you back to Him and His plan will prevail. Jonah 1:15-17) There will be thanksgiving when you are in His will.  Jonah 2:9
Lesson #3 : When God steps in and interrupts your life He IS thinking about you! (When God's plan is fulfilled he will step in and help you. Jonah 4:10)
Lesson #4 : Be careful - Learn from God's interruptions.  (We cannot only have faith and love God when life is good.  Jonah 4)

Jonah's journey shows us that God is in control and he cares about every single step we take and all people we meet along the trail.  I pray that as I put one foot in front of the other I will listen for my Teacher's voice helping me to be faithful and transparent so that those I encounter will see God's will in action. 

I looked back and want you to REMEMBER the many songs that you have spoken to you/us along the journey.  Here are a few.  May these words remind you and encourage you to keep on!

Dancing in the Minefields - Andrew Peterson  (You and Billy's song)
And we're dancing in the minefields
We're sailing in the storm
this is harder than we dreamed
But I believe that's what the promise is for
That's what the promise is for

While I'm Waiting  - John Waller
I'm waiting
I'm waiting on You, Lord
And I am peaceful
I'm waiting on You, Lord
Though it's not easy
But faithfully, I will wait
Yes, I will wait
I will serve You while I'm waiting
I will worship while I'm waiting

Blessings - Laura Story

 We pray for your mighty hand to ease our suffering

And all the while, you hear each spoken need

yet love us way too much to give us lesser things

Cause what if your blessings come through rain drops

What if your healing comes through tears

What if a thousand sleepless nights are what it takes to know You're near

What if trials of this life are Your mercies in disguise

You wrote this "In the words of a song from church this morning.....may I be sweetly broken; wholly surrendered."

Great is Thy Faithfulness - "All I have needed Thy hand hath provided" Strength for TODAY and Bright HOPE for tomorrow. 

REMEMBER
I remember one day in particular at the apartment and you were struggling and God gave you the perfect words and scriptures to calm your mind and spirit. He has done this on so many occasions and often through a note or scripture people have given you.  You also received the following card in the mail that hit you perfectly on that hard day.
"The Oak Tree"
A mighty wind blew night and day,
It stole the oak tree's leaves away.
Then snapped its boughs and pulled its bark
Until the oak was tired and stark.
But still the oak tree held its ground
While other trees fell all around.
The weary wind gave up and spoke,
"How can you still be standing Oak?"
The oak tree said, "I know that you
Can break each branch of mine in two,
Carry every leaf away,
Shake my limbs, and make me sway.
But I have roots stretched in the earth,
Growing stronger since my birth.
You'll never touch them, for you see,
They are the deepest part of me.
Until today, I wasn't sure
Of just how much I could endure.
But now I've found, with thanks to you,
Im stronger than I ever knew."

It is a known fact that once a tree is established, storms and drought actually make the roots grow deeper as they look for water.  You dear sister are in a big storm and drought.   Your roots are growing very deep and you will be as it says in Psalm 1.. "You shall be like a tree planted by the rivers of water, that brings forth fruit "in its season".  

When we are hurting we all have to remember God's faithfulness in the past and His promises for the future. We are all weary of feeling helpless as you struggle and are grieving some of these losses with you.  As you celebrate Easter in that MDA Hospital room, may you and our sweet Dad experience the comfort of sharing in HIS sufferings today (Good Friday) and the POWER and HOPE of HIS resurrection in new and personal ways. "...."That I may KNOW Him and the power of His resurrection and the fellowship of His sufferings.." Phil 3:10

Can't you just see us all 7 of us marching out the door when its still dark to attend the church for sunrise service?  Wearing our new easter dresses...and sometimes hats..and sometimes hating all those curls mom put in our hair!! ha ha   Can't you hear us all singing one of Dad and Mom's favorite songs at the top of our lungs (not talking about you Joshua..ha ha) ?.................

Because He lives, I can face tomorrow.
Because He lives, All fear is gone.
Because I know He holds the future,
And life is worth the living just because He lives.

I LOVE YOU and join the rest of your family and many, many friends and prayer warriors in asking God to comfort you, strengthen you, and encourage you....and may God receive the Glory!!   --Nina

MD Anderson - Day 1

Dad updated us last night and said it had certainly been a long, nauseous  day.  Kristi has been very restless and uncomfortable all day. The zofran is no longer working, and she had been getting relief from phenergan, but was finding no relief with it yesterday.  We have all come to understand that when Kristi is very nauseated and trying to not get sick, she appears to have restless leg syndrome!  She closes her eyes and shakes her right foot continuously.  Dad said, she did that all day yesterday and was so tired, but unable to sleep because of how sick she felt. 

She was visited by several Dr.'s yesterday, including 2 infectious disease Dr.'s. One is the head of the department.  He would like to work on the medications where she could go home on them, rather than be in long term care.  He also communicated that sometimes if they can control the infection, the leaky intestine or fistula can heal itself without surgery.  Please pray for this option!!  

Dad said they also communicated that if the infectious pocket (abscess) is too big, they may need to go in with a large needle and drain them. Their radiologist is going over the CT Scans from AR and will determine if they need to do more scans there.  MDA scans take 450 picture slices compared to the 91 on the scan machine in Arkansas.  So...MUCH more detailed equipment.  Because of this, I bet she will need to do another scan once her stomach can possibly handle the drink.  I'm sure they want to make sure it is safe for her body to do another scan as well.   Dad said, "No big plans yet, just studying and putting the puzzle together. "

I hate that Kristi has had such a miserable day, but on one hand, I am glad they are seeing some of her symptoms at their worst.  This will help them move toward treatment more effectively and efficiently.  Continue to join us in praying for wisdom and understanding for those treating and caring for Kristina. 

I'll end this update with a text Dad sent to us all yesterday morning as he was boarding his flight to Houston. "Let's continue to tell the story for God's Glory even though we do not know the ending!!  It is God's plan and God's purpose and we continue to walk by FAITH ALONE". 

Walking by Faith,
Danina for the rest of us! 

Update & MD Anderson Trip - March 26th, 2013

MONDAY

Grammy and Alyssa shopping
for Easter Dresses!  

Mom and Grandma Bessie flew home to Colorado after caring for Isaiah and Alyssa for their Spring Break and keeping Kristi company in the hospital.  Mom needed to get back to her Tax World. Katy's boys loved being with them and getting to have Great Grandma Bessie in Arkansas.   I don't know if they will feel more worn out from all the grandkids or taxes!! : )

Four Generations with Katy's Kids!

 Kristi had a nurse come into her room and tell her she had been approved to be transported to MD Anderson with a Medical Professional to administer her medication.   Kristi was surprised and explained that she had not even worked out transport yet and would need to call MDA to make sure she was admitted there.  When she called MDA they said they had her pending, but would talk to the Dr.'s.

She was told that she would need to go by ambulance with a nurse in order to skip the ER and be treated as a transfer patient from facility to facility.  Then they proceeded to tell her that her insurance company said it would cost $5,600 and she would be required to pay that up front, and then they would reimburse her $1,000.  Kristi, quickly told the nurse we were going to work on another flight option as God had already provided a nurse who had volunteered her services to fly with Kristi to MDA as the medical professional and He had provided a flight before.  Amy began, along with some others, working toward this flight.

TUESDAY
At 10a.m, we all got a text from Dad saying they were going to transfer Kristi by road ambulance within 2-3 hours. Wow... not enough notice!!!  Kristi was told there were too many insurance problems and hospital policies to take a flight and if she rejected what they were offering it would cause many complications to her treatment and in the future with insurance.

The rush and stress began!!  Billy left right away to go get the kids out of school and get to the hospital to say goodbye.  (The Hospital is about 40 min drive for everyone in the family from their homes).   Dad and Katy began to try and get everything packed up for Kristi to take with her.  Josh went to the Hospital to say goodbye. The family began talking through if Dad needed to drive to Houston with her wheelchair and walker and other necessities or fly.  Amy began looking at flights options for Dad to get quickly to Houston.  We were all praying for Kristi.  She was anxious. Billy was anxious! The kids would be anxious. We all felt anxious.... Back to Houston and who will go with Kristi?  Who will stay with Billy to help with the kids since his job is from noon to 10, or 12 or sometimes 2 a.m.?   Where will we stay, and should we drive or rent a car?  ......and little time to figure it all out!!  Most of all, back to living with so many unknowns and travel for everyone and their family being separated again.  The unknowns medically.....What does this all mean, what will the Dr.'s at MDA find, will it require surgery again, will she be there long term or short term??  Whew....Stay focused ...........ONE DAY AT A TIME AGAIN!!

Kristi was loaded and given all the medication they could give her for nausea and pain via IV at the hospital.  This would not be enough to last the 10 hour drive to Houston so we prayed against nausea and that God would put her to sleep most of the trip.  God answered this pray and she was so grateful because riding that long on a gurney type bed strapped in and only able to lay on your back was not easy.  They stopped one time and she was able to sit up and move around some.  When she arrived at MDA they moved her to her same floor and she knew the night nurse.  She said, "Welcome home Kristi, we will take good care of you!"  Kristi was glad for the sleep all day because she had to do all the intake stuff and have numerous interruptions all night as a new patient.  She said it was sad to say goodbye to Billy and the kids, but they are also SOOOO ready for her to do whatever is necessary for her to get well!  It was hard for Billy to not be able to go with her, but he knows his Company has been more than generous already with his time and pay. Katy took the kids home with her for the day and they had a great fun afternoon together.  A friend of the family is staying the nights at their house part of the week and Amy and Katy will help with the kids on the weekend.

Billy and the kids watch as she is loaded! 

WEDNESDAY
Dad flew out of Tulsa to Houston this morning at 8a.m.   We have rented a car and nearby hotel room through next Wednesday and will determine what we need more in the days ahead.  Amy and I are scheduled to fly down and relieve Dad next week if needed.  I spoke with Kristi a few minutes ago and she said she was doing okay, just struggling with so much nausea.  This constant nausea is draining and she never feels like eating.  She is mal-nutrioned and needs to eat.  They are considering giving her a patch behind her ear or a different treatment to see if she can get some relief.  Please pray they will get to the ROOT cause of her nausea and her infection.  Treating the symptoms is not working.  Pray that her infection stays contained by the medication and does not go systemic and septic. Kristi's primary Dr., Dr. Levenback, who has been talking with the infection disease Dr. in Arkansas, is out of town this week.  However,  her other two primary Dr.'s and surgeons are there.  Pray for wisdom for all of them in the days ahead.  We continue to ask God to close up any fistula so she will not have to go through surgery again.

"Abba, Father," he cried out, "everything is possible for you. Please take this cup of suffering away from me. Yet I want your will to be done, not mine." Mark 14:36

Jesus prayed this prayer over 2000 years ago this very week as he went to the cross.  We have prayed this Scripture as a family from the beginning of this journey, and we continue to pray it.  I told Kristi last Wednesday that God has seemed content to not remove her cup of suffering yet and am praying for His enabling for all of us to continue to live well with this suffering so that His Will will be accomplished and He will receive the Glory.  Kristi wants this.  As Amy wrote earlier....Kristi is asking God to help her remain under this trial until God is finished with His work.

May you remember Christ's sufferings this very week, and thank Him for "Doing the will of the Father" so we might have eternal life and hope in our own suffering.    - Danina

Returning to MD Anderson

The big picture is that Kristi will need to return to MD Anderson.  Dr. Stillwell (the local infectious disease doctor) has worked steadily at trying to resolve Kristi's infection. In our naive non-medical minds we are trying to make since of all we've learned in the last couple days and I hopefully can make sense of it here for you.  What we do know is that Dr. Stillwell feels like they are not equipped here to bring this to an end for Kristi and she needs to return to a place that fully understands her surgery and its aftermath.  

He explained to her last night that locally and at MD Anderson they have continued to grow the cultures that they've taken and multiple infections have shown up - Staph ( a non threatening type of staph, not MRSA) strep and posistive and negative rods as well as other types that I don't even know how to spell :)  The abscess that they have located in her abdomen when she first came in to the Ark. Hospitial is shrinking so we do know that antibiotics are working there. However our bodies respond to an abscess by creating a  capsule around it and the antibiotics work from the outside in, therefore the treatement is slow and the goal is to stay ahead of it so that it does not break free and go systemic throughout her body. At this time they feel like the antibiotics are working and staying ahead of the game.  However due to all the bacterias/staph that is growing in her body it seems to indicate there is a fistula (hole in an organ) or leakage of some sort either in her GI tract or GYN tract.  This does not show up on the scans and once again an area that Dr. Stillwell says they are not equipped to treat.  MD Anderson will determine if there is a leakage and treatement would require surgery.

Another scan they did this week as noted in an ealier post was to test the kidneys.  On the CT Scan it showed that her right Kidney was enlarged.  I guess a normal kidney clears in under ten minutes and Kristi's right cleared in 20 min. and her left in 34 minutes.  This would indicate that the Left kidney was having to over work itself but yesterday showed that they were producing equally one at 51% and the other at 49% so this is a good sign and just something they will need to watch. At this point they will not put a tube in to drain the kidneys since they seem to be draining at equal rates.

At this point we will wait through the weekend before we are able to set up her return to MD Anderson.  She has been accepted to acute hospital care here which is due to the fact that she is on 4 different antibiotics and that is too much to go home with and expect home health to cover that for her.  She will need to remain in the hospital for 5-6 weeks for the IV treatments. At this point we dont know if that means  MD Anderson for that entire time frame or if she'll get returned home to this hospitals acute care floor.  

Recently I did a study on battling discouragement, the key ingredient being that we focus on God's Character and not on our circumstances.  Kristi told me today she's focusing on staying under the trial God has for her instead of spending all her energy wishing it way.  We celebrate that God is our Hope He is El Shaddia, the one who is all sufficient, He knows and Understands all things.  As Isaiah 40 states He does not grow weary or tired (just we do) Yet He gives strength to the weary and those who HOPE IN HIM, the LORD will renew their strength... they will walk and not grow faint.  So we "walk onward" one step at a time placing our Hope in His Understanding which we do not always Fathom. We do know that God continues to go before us and gives us the Strength for today and Hope for tomorrow. 

Amy (for us all) 

DAY 9 - ARKANSAS HOSPITAL

Kristi was able to drink enough of the contrast drink to get a good CT Scan.  The scan did not reveal a bowel obstruction which is good news.  They are hoping to compare it to the MDA scans to make certain.  It did reveal that she still has an abscess in her abdomen, but the drain is in the right place for it to drain, and it has gone down in size.  They also saw that she has an enlarged kidney and will have some further testing concerning this.

They started her on two new types of antibiotics to see if the infection responds better to them.  They are watching her nutrition and are concerned she may need to be given blood for anemia.  They will determine this after today's blood tests.  She still has bouts of nausea with her food intake.

Kristi is growing very weary of being in the hospital, but doesn't want to go home without the infection being clear, or knowing she is on the right medication.  Yesterday they inserted a pic line into her arm for the medication and to continue to do the blood draws because her veins were not continuing to be able to handle all the antibiotics via her IV.

Please pray that the AR Dr.'s and the MDA Dr.'s will be able to communicate and transfer records for comparison.  Pray for wisdom for them and that Kristi will be able to eat and nourish her body.

Isaiah and Alyssa are having a fun spring break with their grandparents, great grandmother, and with some sleepovers or play-dates at some neighbors and friends.  Thanks to all for helping them through this spring break.

Day 7 in Arkansas Hospital

One day begins to roll into the next when you spend days on end laying in a hospital bed.  Kristi says she loses track of what day it is. Each day carries new ups and downs of its own.  We all find ourselves longing to make sense of the tid bits of news we get from each doctor or nurse who comes to care for her and often times that changes with each visit.  Todays Jesus Calling was very fitting when it said "Dont let your need to Understand distract you from My presence. I will equip you to get through THIS day victoriously as you live in deep dependence on Me"

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matt 6:34 

We are all learning to take one day at a time and Lean not on our own understandings but wait on God and His perfect timing.  Today Kacey and I (Amy) were able to spend the afternoon with Kristi before taking off for a few days to Colorado.  As I think about our mini vacation I long for Kristi to have a mini vacation from her long days.  I told her I wish I could just take her with me so she could stare out the windows and look at new scenery plus to all of us Colorado is the Home of our Hearts and we feel at rest there.  There is a peace that settles over you to be in the majestic mountain ranges and watch the snow falling. Theres a lot to say for new scenery and we pray that Kristi will soon get to go home - that will bring new Hope and rest for her soul. 

For today Kristi had a mini vacation from her hospital bed into the CT Scan - not so fun and often she has to find the happy place in her head as this is the 4th CT scan in less than a month. The scan will look once again for fluid build up, air pockets, and obstructions.  She persevered in drinking the contrast - thats the part she dreads the most and got accolades from her nurse at how well she did.  Today we also found out that her cortisol which they thought was low is normal.  So its down to this CT Scan and finding the correct antibiotic to clear up the infection.  As we were leaving today they were putting a pic line in. This will help a lot as she is getting bruises everywhere from all the places she's been poked to take blood each day.  This will also allow her to go home with IV medication once they figure out which antibiotic the bacterial infections respond too.  She still battles nausea but seems to bounce back from it quicker. Small changes are BIG Celebrations at his stage of the game.  She was even able to sit up in a regular wheel chair for her ride to the Scan. 

So now we wait - once again! I told Kacey to bring a book along because on some days we spend a whole lot of time just "waiting"  She entertained Kristi and I at times by updating us on her book, it's had her in tears and suspense.  

Thank you for waiting with us and filling in the gaps with your prayers.  Kristi told her community pastor today that your prayers were the greatest gift because she finds at times her brain is so weary she can't even pray for herself.  We thank you for being faithful that when the Holy Spirit nudges you to pray, you are obedient.  Kristi often finds that when she's getting anxious or discouraged those feelings dont take up residence in her heart and she knows its because someone out there has sought God on her behalf. 

Fighting Discouragement

When you face the perils of weariness, carelessness, and confusion, don't pray for an easier life. 

Pray instead to be a stronger man or woman of God. 
-Luis Palua

Even though research has shown that 85% of those having this type of surgery have many complications and often fight infection, there is always hope that one will be in the 15%.  Kristi often says that this recovery already feels long, and it is a year recovery and a permanent life change.  Pray for her heart and mind so that weariness and discouragement will not take its toll on her recovery.  The Dr.'s have all communicated how important her personal attitude, faith, and support system 

is to her full recovery.  

Kristi had a better day yesterday.  She was able to eat without nausea and pain, did well with physical therapy, and looked and interacted better.  However, today she did not feel as well, and was getting sick again after eating lunch and overall did not feel well.  It is hard to not become discouraged because there do not seem to be clear answers or solutions to some of these symptoms.  The fluid coming from her drain tube continues to look infected even while on 4 antibiotics.  Please pray for Dr. Stillwell, the infectious disease Dr., who is working very diligently and thoroughly to determine what medication is needed to treat Kristi.  He has found that two bacteria growing in her cultures are resistant to Levaquin which is what she was taking when she left MDA after her previous infection. Her internal Medicine Dr. Davila, and Dr. Ivy, the Gyn Oncologist, are also working with the Dr.'s and MDA to care for Kristi.  They will not release her from the hospital until she is able to eat and receive nourishment without the pain, nausea and vomiting, as well as, understanding the infection. They would like to do another CT Scan on Monday if her body can handle it.  Pray that she can drink enough of the contrast liquid for the scan to reveal any problems.  Monday night she was too nauseated to drink it all which weakens the contrast in the picture.   Please pray for wisdom for these Dr.'s as Kristi's case is somewhat unfamiliar to them on many levels.  Pray for wisdom for the MDA Dr.'s as they consult from a distance.  

Yesterday, I had a good day with her until I left at 2:30 to be home for Isaiah and Alyssa.  She also enjoyed a visit from Billy before work, and then Dad, Mom and Josh as they helped her take her evening walk.  She was later surprised with a visit when Katy went on a date with her nieces and stopped by to cheer Kristi!  She was even for the first time thinking she felt up to seeing some extra visitors and felt good enough to watch t.v. without feeling sick. But today, it was back to a hard day. We are all so sad for her and wait with her for answers and relief.  

Mom and Grandma arrived to take over for Danina and Elise. 

 Pray for them as they take over the care taking at home with the kids 

for Spring Break and Kristi at the Hospital.  

It is much harder and more tiring with them 

being in two different places. 

It is always so hard for any of us to leave Kristi, Billy and now the kids.  

As Elise and I were driving toward Tulsa this morning, 

the song Blessings in Disguise came on.  

I love this song anyway, but it sure made me cry today!!  

 Click on the picture below if you haven't heard it or want to hear it again!  

What if Trials of this life are God's Mercies in Disguise.  

I'm grateful this world is not our home!    

I can't wait to see what God is going to give you 

through this suffering Kristina, Billy, and Kids!! 

I love you dearly --Danina

Laura Story: Blessings (2011 w/lyrics) by vicluvsdLord

Laura Story: Blessings (2011 w/lyrics) by vicluvsdLord

Laura Story: Blessings (2011 w/lyrics)

by vicluvsdLord