Friday, March 29, 2013

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

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. 

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

Thursday, March 28, 2013

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! 

Wednesday, March 27, 2013

Update & MD Anderson Trip - March 26th, 2013


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.

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! 

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

Saturday, March 23, 2013

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) 

Wednesday, March 20, 2013


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.

Monday, March 18, 2013

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. 

Saturday, March 16, 2013

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

Thursday, March 14, 2013

A Wish from Mom

Wishing you the simple peace from childhood --Love, Mom

Mom and Grandma are flying in today to see Kristi and take their turn at care taking next week.  It has been so difficult for Mom to not be able to just move in and be here full time.  She owns a tax business in Colorado and this is a rough time to be away.  A BIG Thank you from Kristi and the entire Nay Family to Kalene Weinholdt and Marie Haskett for being so willing to keep things going while Mom has needed to be gone. 

Today's Update:  They are planning to compare the MD Anderson records with their findings here, but believe they will release Kristi to go home in the next couple of days with home health coming 1-2x a day to administer her antibiotics.  She has started eating again and is still battling some nausea and pain, but nothing compared to what it was on Monday.  If she is still having these issues once the infection is gone and once she is eating more regularly they may order some further gastrointestinal tests.  Kristi says....NO MORE TESTS!! 

Continue to pray that the blockage will be removed and that Kristi can eat without the side effects.  Pray that these antibiotics will completely remove any infection in her body and that she can begin to regain her strength.  

Also:  Thank you to to Billy and Kristi's Church and to the Community Groups at Fellowship Bible for all the meals and household items.  Also, the gift cards given last week by a Community Group was perfect timing for some needed items at Walmart to make life more manageable and organized at home for Kristi's care.  Thank you Simmons Chicken for all the Chicken! You all have made our burden lighter and allowed us to focus on "the people" needs.   Many of you have given for medical bills, housecleaning, mortgage payments, rent in Houston, needs in Houston for travel and food for our entire family,  tons of cards and gifts, and meeting the needs of caring for the children in their daily life.   Kristi and Billy have been overwhelmed and grateful and we have been blessed by you.  May God give back to you in return.  

Wednesday, March 13, 2013

Update: Arkansas Hospital - March 13th

It was so nice to be able to take Isaiah and Alyssa to see their Mom at the hospital.  It alleviated their anxiety to go see her and know she wasn't "Clear in Texas" Alyssa would say it!

 Papa George had Isaiah and Alyssa rub Kristi's feet with lotion.  We do
that often for her.  Isaiah wasn't sure at first, but tried it, and Alyssa of
course did a great foot massage! 
When I arrived this morning, Kristi was having a rough morning.  Dad stayed with her last night and said she was able to rest some.  Her blood pressure was 78/39 yesterday so they once again had to remove the stronger IV Pain Medication.  It was still low this morning. She was light headed and nauseous and has gotten sick this morning again. They still made her push through Physical Therapy because she has not moved in two days and that could be contributing to some of her discomfort and issues.  We saw Dr. Din, the Hospitalist, this morning and he said her MRI results showed lots of inflammation and some small cysts on her liver, but this is all normal.  They did the MRI because of concern that cancer could have spread to her liver.  Thank the Lord, it was not cancer and all looked normal for "her age and post surgery".   He said they believe her primary issue is infection and that is causing the decrease in appetite and many other issues to overall not feeling well.  They believe the drain tube is allowing the infection to drain out of the abdomen so it isn't going systemic through her entire body and causing the high fever and other complications.   We are still waiting to talk with the nutritionist because Kristi is on the high side of malnutrition due to not being able to eat much without feeling sick.  The infectious disease will be by this afternoon after getting records from MD Anderson to compare the past infection treatment and results. Dr. Ivy will also come later today.  He is the GyN Oncologist.   We appreciate your prayers for wisdom for these Dr.'s and for her body to respond to the medication and be free from infection.  The drain is still showing the color of infected fluid.  Pray also that she can eat without lots of discomfort.  The CT Scan from the other night did not show the intestinal obstruction, but that could also be due to her inability to drink a lot of the fluid to provide a strong contrast.   She may have to repeat this if she cannot continue to eat.  They do believe the infection could be causing her to not feel well when she eats and have no appetite as well.  Please pray the obstruction does resolve itself.  It is looking like God has answered our prayer for staying in Arkansas for treatment at this point.  But, everything sure changes quickly in this process.  Thanks,  .....Danina

Tuesday, March 12, 2013

ER Trip/Arkansas

Even youths grow tired and weary,
    and young men stumble and fall;
 but those who hope in the Lord
    will renew their strength.
They will soar on wings like eagles;
    they will run and not grow weary,
    they will walk and not be faint.  

--Isaiah 40:30-31

We were all weary and tired before this week started, and yet God has entrusted another tiring and hard week to Kristi and her Care Givers.  We are counting on God's promise in Isaiah and holding onto the fact that God never grows weary or tired and He can sustain us all.   (Isaiah 40:28)  

We "were" having a good week.  Alyssa was baking in her easy bake oven for her Mom and all of us, the kids came in after school and were telling Kristi about their day, and I was organizing all the food those of you have so generously helped provide for the Wright Family.  Then we got the dreaded phone call from the home health nurse.......
"We would like you to go to the Emergency Room"
Kristi had a flare up with her partial blockage in her intestine on Sunday and has continued to produce more fluid from her drain tube  as well as producing evidence of an infection in the fluid.   I called her local Dr first thing yesterday morning to get an appointment, but after the home health nurse came and talked to Kristi's Dr. in Houston and Springdale, it was determined we needed to take her to the Emergency room for cultures and scans.  I knew she feared this happening and being away from her Dr.'s and MD Anderson.  I called the Dr. right away to make sure the ER was the necessary route.  It was!!!  We both wanted to cry!!!  And Kristi did some as the evening progressed.  She had another small loss to grieve.  I prayed with her and we set our minds in the necessary direction. 

Kristi was feeling so rotten, that the thought of even getting out of bed and getting ready to go to the ER sounded daunting.  I called Katy about coming to help me.  We were so grateful that my daughter Elise was with me.   She quickly rose to the occasion and kept her cousins so Katy could help me load her and take her and a neighbor helped with Isaiah and Alyssa until Elise could be home to help them get to bed.  Thank you!!   Billy and Josh left work and met us there to help get her into the hospital with all of her "equipment and loads of pillows" it takes for her to sit or lay comfortably.   Some friends brought us dinner and we said we would sing Happy Birthday to Josh as we ate our food at the kiddie tables in the ER.  He preferred we DID NOT!!! 

We did her CT Scan in the middle of the night and began moving forward with the Infectious Disease Dr.'s orders to start her on 4 antibiotics while we wait for the cultures to determine the exact source and type.  Her white blood cell count should have been high due to the culture from the drain tube, but it was normal.  I initially thought this was a good sign, but they said it isn't because she has an infection somewhere and her body is not showing signs of trying to fight it off.  She hasn't had a fever or elevated blood cell count.  This could mean there is a possible abscess of infection hiding out somewhere. She is very nauseous and uncomfortable and this is also discouraging.  This afternoon, she will have an MRI.  Dad came to stay with her so I could take a nap after being up most of the night.  They are still working to determine the source of the infection.  

Please pray that they will be able to locate the source and treat it here locally.  The thought of transferring her back to MD Anderson for treatment is overwhelming.  She wants to stay home.  The Dr.'s have said they need to be able to treat her in the least invasive manner due to her surgery.  Pray for this as well.  Pray that the blockage in her intestine clears up and allows her to eat.  She has now lost 20 lbs since her surgery (which she isn't really complaining about : )  ......just didn't want to do it this way!
Josh and Katy helped me get Kristi's wheelchair in that could recline so
I could maybe rest a little as we waited for her to drink two of those terrible 
bottles of liquid for her scan.  I really don't know why they bother putting pretty 
pictures of fruit all over the bottle.  It doesn't help AT ALL!!  She could only get down a small
amount due to intestinal pain and nausea, but they did the scan anyway.
Billy came by at 11p.m. after work to see Kristi and Pray for her.  He had to go home to rest for work and get the kids off to school in the morning.

We will keep you posted as we know.  

Sunday, March 10, 2013

Week One @ Home

Week One's Caretakers
Week one is Complete! She's been home for seven days and it's been fairly uneventful. We've spent time getting in to a rythym at home. Its taken a number of us to care for her this week as we are trying to find the balance between caring for her and our own homes, lives, and jobs. Billy has been great at taking the night shift after returning home from work around midnight and on through until he leaves again for work the next day at 11am. The rest of us have taken our shifts in and out of the home to provide for her daily needs.
Leona returned for the week to help care for the kids and was a great caretaker assistant to help out when we needed extra hands with Kristi. 

She is not liking the V8 juice
Doing Mini Squats, not her favorite exercise
Home health  and PT came once this week to do an evaluation on how to care for Kristi.  This is a prayer need that her insurance will cover all that she needs and that the home health service we've chosen will be a good fit for her.   - Another challenge this week has been getting enough nutrients in her. She is good to drink her ensure and glycerna drinks to get the nutrients its just that her intake is very minimal maybe drinking one a day over a period of time. She was able to talk to Dr. Levenback on Friday who said we will not know if her small intestine has come un-kinked so she can begin to add others foods in and see how she does.  When I left her today she was battling some pain and nausea and she truly didn't add much back in so that feels a little discouraging.  Other areas of concern this week has been that her pelvic drain has changed in color and consistency as well as volume.  The doctors had hoped that it would begin to drop to about 10ml and we would be able to remove it but nsteaid of decreasing it is increasing by quite a bit.  She will try to see a local Gynecology Oncologist this week to see if we can get some answers to that.  Please pray with us that she'll be able to get in soon and that the drive there will not be a set back for her. 

Katy experienced  an adrenaline rush giving her first shot!  Joshua was glad she agreed to do it since neither one of them like needles!  Katy decided she might like to do that more often!  Do to the stinky pevlic drain we have all decided to done our pretty nursing masks when taking care of some of Kristi's needs! They are our latest fashion statement. 
As the week progressed on Kristi was able to leave her bed some and sit at the couch for an hour   and last Thursday when it was so beautiful she chose to sit outside and watch dad and Isaiah shoot baskets.
Danina and Elise arrived last night to take Week Two shift!       

Monday, March 4, 2013

At Home

Kristi and I on the plane
Yesterday I (Amy) had the Honor of escorting Kristi home. As Danina mentioned the day started off with an array of emtions for all of us.  As I awoke I felt the overwhelming sense  of joy at getting to board a plane that God had provided just two days ago, yet I also had an irrational fear of this plane crashing! I certainly recognized this as Satans tactic to rob me of my joy and asked my husband to pray with me and over me. At the conclusion of our prayer Rory Hosteter the pilot called to tell me we needed to take the smaller plane!  Oh MY! I told myself  "Here we Go Jesus!" You, me and Rory, and a good dose of Dramamine due to the fact that turbulence has a way of making me nauseous real quickly!  Rory himself was a gift to me as I know he and his wife personally, and have had the privilege of flying with him in the past - God knows about all things because two days earlier when we were attempting to connect with an Angel Flight pilot a sequence of events and phone calls led us to Rory and he was available.  Thank you Jesus for that gift to me and to our Family - I found myself from here on out being Grateful!
Grateful for the honor to fly with Kristi on her trip back home, grateful for a small plane that worked far better than even the bigger one in getting Kristi in and out of the plane with ease, grateful for sunny skies, grateful for a mainly smooth flight and for dramamine when it was turbulent, grateful that all my fears vanished after the gift of prayer with my husband. Grateful that God cares about all details.  He took care of the right plane, the right pilot, sleep for Kristi on the flight home, and even a hug for my mom! That morning my mom was struggeling being at home and not apart of either end of this trip with Kristi and told dad she needed a hug and he wished he could give it to her.  He prayed before leaving the apartment that God would show his love to her on that day.  That morning at church a young man came and gave mom a giant Hug and told her he felt she needed a Hug today!  God cares about all the details!
at her own sink
We arrived back in Arkansas safely! and I had the joy of escorting Kristi through her first night and day at home. We were nervous about how this day would unfold since it took her a couple days to recover from her day long visit last Wednesday to MD Anderson for follow up appointments. What we've all found along the way is that when we are with Kristi there is a sense of Peace that comes with that and it feels very natural to work alongside her to care for her needs.  We rolled into the normal rythym of taking care of her night time needs and we both crawled into bed being grateful that we were "home"! Today she awoke with antsy legs and tendon pain, all things we feel are due to the medication she is on, but she also awoke with a smile.... something all of us have come to appreciate through this journey with her.  Pain and trials can rob us of a lot of things, but it doesn't have to have the power to rob us of our smile or the inner peace that comes from Christ alone. We moved on through the day at a comfortable pace of taking care of drains, medicine, baths, walking, phone calls to home health care, rubbing legs and applying ice packs. It felt right to see Kristi standing at her own sink today.  This was her exercise for the morning to walk to the sink to brush her teeth and wash her face. Something she has not done for five weeks since leaving home. Just getting to brush your teeth at the sink and not in cup at your bed is a gift.  So many things we take for granted that she is gaining a whole new perspective about, as are we, as we walk beside her. All in all today was a Good Day to be at Home, physically and emotionally.  To be at rest in this place and at this time on the road to recovery.

As I left today I passed the baton of care to Terrie, a friend of Kristi's from the cancer posse. Thank you Terrie for filling the gap between myself and Katy, Josh and Dad as they arrive this evening to do their part of taking care of Kristi while Billy is gone to work.   I sure find myself often counting my blessings for this large team of care takers and that mom and dad decided years ago to birth themselves a basketball team worth of kids and to teach us the importance of making assists to one another in the game of life.

The Trip Home...March 3, 2013

We were not prepared for the contradictory emotions
that hit all of us yesterday with this transition......
Joy and Sorrow
Excitement and Anxiety
and all mixed with a deep Gratefulness!

Kristi was having a rough morning the day of her 
trip home.  She had a restless night due to pain
and side effects to medication. 
 Having her family all back together
and leaving cancer behind in Houston
kept her moving. 
The 20 min car ride to the airport confirmed how much we needed a plane ride to Arkansas!
Amy flew from Siloam with Rory to meet Dad and Danina to help
Kristi fly home to her family and friends!  She was
already in pain from the short road trip and had a rough start
to the plane ride, but then was able to go to sleep.  
Dad went back to finish loading the car up and started
his drive back to Arkansas.  He left a card of encouragement
for the next people and prayed for them as they start
their visit to Houston for Medical reasons.  As you can see...

there would not have been room for Kristi to drive home anyway!!  : )

Two very happy Children and Mom
to see each other when her plane landed.   It was a happy, but quiet reunion as the reality of the situation was a lot to take in for the kids and Kristi was exhausted and not feeling well.  

 Joshua is a handy brother to have around!  He built
this to help her move while in bed and get in and out more easily.  

Settled at home!  Thank you LORD!!  
Continue asking God with us to protect
Kristi from any further complications and to guard against infection.  Praying her obstruction in the small intestine resolves itself and that the fluid in her abdomen will continue to decrease.  Praying she can rest and heal and feel well enough to eat and hydrate as needed.  

We have a schedule for the month of March for Care Taking Organized.  Kristi says she is like taking care of a newborn baby around the clock...and that really is a little of what it is like!  I'm sure glad she can communicate and tell us what she needs ....unlike a newborn!!
  I told her yesterday as I was getting her ready to go to the plane that she was such a good patient.  She always remains kind and appreciative even when in great pain and misery.  

Sunday, March 3, 2013

Prayer Requests for Travel Day

We have been busy packing up the apartment and getting Kristi ready to go home today.  She is anxious about the travel and the transition away from her Dr.'s and this controlled environment, but also looking forward to it.  Seeing her children and having her family back together will help in her recovery!

Pray for smooth and safe travel today.   It can be painful for her to go over a little bump in her wheelchair!  We are soooooo grateful for the flight home to make this travel and transition so much quicker.  However, there has been a small complication this morning, but we are praying God knows best what plane Kristi needs to be on.  (Amy posted on Team Kristi Prayer Warrior Facebook Page)

Dad was singing yesterday, "One "Moment" at a Time" because everything all day kept changing quickly with her home health care and travel.  Amy is now flying down with the pilot and we will meet her at the plane to get Kristi settled at Houston Hobby.  She will fly back with Kristi and I will get on a plane at 2:30 at Houston Hobby to return home. God provided for me a flight home on short notice through a cancer survivor friend of Kristi's.  Thank you!!!   Dad will start driving after he is finishes loading the car.  Pray for safety for all of us in travel as we are tired and there are a few always these days!!

Pray also for Kristi with her medication.  She has been having some very uncomfortable side effects from medication and we are trying to change some of that, but change also brings other side effects.

Isaiah and Alyssa are  extremely excited!  Pray Kristi feels well and has the energy after her travel to interact and enjoy them.  She is usually not in great shape after she has been upright and moving for a long period of time. Thanks to those of you who have the house clean and disinfected and her specific food needs all in place as she returns!  You are AWESOME!!  Thank you to the Elders of her church and the many others that are specifically praying today.  Thank you for trading cars with Billy so Kristi's travel can be easier once in Arkansas.  So many little details and God cares about each one...and so do you..... her cherished family, friends and prayer warriors.

Pray God will take all of her anxious thoughts captive!!  
"You will keep in perfect peace him whose mind is stayed on you, because he trusts in you."  Isaiah 26:3