Nicknames

Update:  Several days combined into a few thoughts of the overview:
Been battling for several days with fevers - between 102 and 104.5
Fluid buildup in sac around lungs.  Surgery for drainage tube - In for several days.  Hard, hard hard to have that tube in her!  Breathing so much more labored when getting up to go to the bathroom.  One more surgery site to have adhesive on - couldn't lay on that side to giver her back a break.  She can't lay on her right for drainage tube and port or left for G-tube.  Adhesive removal for dressing changes extremely challenging!
Back hurts so much.
Breathing much better.  :)  We will take every improvement.  It can get so hard in ways that were never before even contemplated.
Removed the tube!!
Breathing then became significantly harder and Oxygen levels would drop quickly when oxygen not in her nose.  Had to go up to 2-3 liters of O2 to keep Oxygen levels good.
Started shaking really bad each bathroom trip.
Doctors decided another CT scan was needed to determine why breathing took such a sharp turn.
CT scan shows everything (organs) shifted upwards.  The already crammed space with tumor is now significantly more squished.  As I understand it the diaphragm muscles function to expand and pull things down with every breath to open up lungs and take good breaths.  The muscle/nerves there aren't currently working so everything is no longer pulled downward.  Pushing on lungs and heart :(
But we know that there is no sign of Pneumonia, no sign of virus or bacteria :)

AMAZING NEWS!  CT scan was able to show doctors significant breakdown of pockets of the tumor.  Cancer has been dying off and had such a great response to chemo in only 2 weeks!  Progress is usually checked after 2 cycles of chemo (3 weeks each cycle) so at least 6 weeks.  It's very nice to know that it has had such a great effect and that doctors can have a better idea of how her body is responding!

Another Karin :)

We love to nickname our nurses and people that help us in so many little ways that mean so much. 

I ran into this scripture Matt 10:42  And whosoever shall give to drink unto one of these little ones a cup of cold water only in the name of a disciple, verily I say unto you, he shall in no wise lose his reward.

Christ spent his life serving others.  I am grateful to all those who touch our life through service. 

Interesting cup references:

Matthew Chapter 26:  vs 26 And as they were eating, Jesus took bread, and blessed it, and brake it, and gave it to the disciples, and said, Take, eat; this is my body.

27 And he took the cup, and gave thanks, and gave it to them, saying, Drink ye all of it;

28 For this is my blood of the new testament, which is shed for many for the remission of sins.

On the same page vs 39  And he went a little further, and fell on his face, and prayed, saying, O my Father, if it be possible, let this cup pass from me: nevertheless not as I will, but as thou wilt.

Cleaning Lady extraordinaire!!

Rain's Spelling of Courage

Nickname Curly.  Also Croatian connection through seeing a jar of nutella :)

Sharing Talent:  Listening, Kindness



Dr Baby and Dr Hope


Primary Children's moms.  What a Zion community where we cry together.  Laugh together.  Share one another's burdens and share in each other's journey.  We say hi to each other and take time to sit and chat and really listen to the answer to the question: How are you?

1st week in hospital before Chemo and before surgeries.  Painting suncatchers. 
Has not been up to more than movies and listening as I read books.  I mentioned when she starts feeling up to crafts again we have many options.  She says "Yeah!  If we are bored that is our own fault!"


Boston
Laughing with River.

Sharing talents:  Harp!  So many people come to the common areas to play piano, harp, violin, guitar, harmonica, etc.  They have puppet shows that are put on outside the door to individual rooms.  A tv channel for the patients in the hospital.  Bingo is held for all kids that want to go in person.  If in your room you can watch it on tv and call in on the phone for a bingo!

Other nicknames:  Moon, Ears, Stickers, Red, Smiley, Ray (of sunshine), Staci (sometimes they look like people we know), Boston, Mr Mess, Manny, Cheetah, Dr. Cloud (perfect name for her, named by Silver who still asks how Cloud is doing), Dr Hope, Dr Baby.  To name just a few. 

Sept 21st 2014 Hello from Primary Childrens

It feels so good to be back on my blog.  It feels like coming home.  I have always enjoyed organizing pictures and writing a bit about our happenings. 

I plan on blogging regularly with updates of River, Silver, Summer, Tanzi, me and Colt.  This is a family journey.  I love pictures - however many of the things I describe will have no pictures for respect of privacy and modesty.  Those pictures that I do have are worth more than a thousand words.  Most of the pictures that will be posted are on the feel-best-moments of the day.  Her health can turn on a dime - and is very serious and very fragile. 

I so enjoy a smile.  A wiggling of her finger for a wave goodbye.  A conversation.  A question.  An "I love you"  a request of something to drink - she has gone pretty much without much by mouth at all for 2 weeks now.  A sip of pop.  An ice cube.  She is very good at requesting what she needs - if she needs help she will ask.

First of all a HUGE thank you and grateful appreciation for all the love, prayers and support we have received.  We have felt of your love and concern.

Update:  Silver Summer and Tanzi get some Grandma time with cousins!

Update:  River:  The days are blurring together.  Here is a quick rundown.
Sept 2nd:  Ultrasound showed enlarged Liver
Sept 3rd - this one felt like the 2nd because we checked in just after midnight and didn't get settled into room until about 4 or 5 that morning.  Scans showed abnormal tissue throughout liver.  We were put in the Oncology (Cancer) pod until further diagnosis.

I don't have my calendar with me - I usually wear an apron to keep my essentials with me - phone, calendar, journal, pen and scissors.  So we'll just do this from memory.

More scans also showed about 20 spots in the lungs and possibly heart. 

Cancer.  After a biopsy of several parts of the liver it was confirmed.  Tears.  Heartbreak.  Faith.  Love.  Grieving.  Together.  Eternity.

We didn't have a clear diagnosis for well over a week.  This cancer case is extremely rare.  Hepto Blastoma most often occurs in babies.  Heptocellular Carcinoma in Teenagers and adults.  River is 8 and right in the middle of that and it wasn't determined which one until extensive staining of tissue and collaborative effort by specialists all over the country.

We were hoping for Blastoma.  GREAT news! Pathology reports back from Texas. Diagnosis: aggressive Hepatoblastoma instead of Hepatocellular Carcinoma - which chemo is pretty ineffective against and can't really treat. With aggresive Blastoma we have hope it can shrink tumor over 6 months enough to possibly attempt surgery or transplant? Still tough battle but better than alternative!

Team.  A team of nurses, doctors, techs, specialists have given River the most amazing care and tender concern. Primary Children's is an amazing place whose motto is "The child first and always"  We have felt this clearly as they have always demonstrated the utmost care and treated this as an individual child with individual needs and response to treatment.

Options.  1.  Do nothing.  Just try to manage pain and nausea. 
2.  Chemo. 
All other options are not available to us now.  No surgery at this point because of the spreading in the lungs.  Surgery is a possibility once cancer shrunk or no more in lungs.  No radiation.

We fasted and prayed in making such a big decision.  I was nervous about choosing which path.  As we pondered in our hearts we felt peace about chemo.  That sounds so weird to write it because chemo is so ugly and takes you to the very brink of death.  But Chemo is also hope! 

We fight.  We do everything in our power to eradicate this from her body knowing it is in the Lord's hands. 

I had recently taken our girls to a cancer walk in our small town.  River was familiar with the term cancer and with talking to her about it we asked her what she knew about cancer.  She says "People loose their hair".  Yes.  She slumped down and then raised back up.  She held out her hands infront of her as if weighing the options.  One hand:  "Get Better"  other hand comes up "Keep my Hair"...hand gets higher "I choose get better"

River currently has 0 white blood cells that fight germs.  A normal person has between 8,000 - 10,000.  This was expected as part of chemo. We need to ask that no one with any sickness in the last 2 weeks (fever diarrhea runny nose flu etc) come into the cancer unit of the hospital. We are trying to keep germs out of her area :) and all the other kiddos on this special floor.  Thank you for all the support, outpouring of love, and understanding. 😄

Chemo.  Heavy dose of chemo.  Chemo targets fast growing cells.  Most fast growing:  1.Hair.  2.The entire lining of your inside "tube"  from mouth to end.  3. Cancer   Chemo every week. 1 week heavy 2 weeks "light"  Chemo is administered heavy once white blood cells rise from 0.  As soon as the system starts recovering it is slammed again in hope. 

Side effects - with every side effect there is a medicine or lessening somewhat of severe symptoms.

Tuesday we received word that her lungs are filling with fluid.  As Chemo is hard on the body - it needs to be flushed from the system.  Lots of fluid is pumped into her body to try to flush kindeys.  Swelling of her feet went down after fluid reduction meds started to work.  All the water possible was pulled out and her lungs still had fluid.  The liver is so large that it cramps everything including lungs.  Drastically reduced ability to breath.

Wednesday Surgery inserted a "piggy tail" tube into the lining of her lung to drain off fluid.  Surgery was a huge success.  Expected 45 minute surgery took 25 minutes.  Were able to drain a lot of fluid.  She has still been hooked up to the machine Thurs and Friday, Saturday and now Sunday.  Friday night we turned off suction (tube still inserted) and were hoping that all fluid drained and would not come back.  Friday night was atrocious.  With all of intense pains (stomach, liver, lungs, back, neck, etc. nausea, diminished breathing capability it just kept getting worse.  Had her stand to wash hands.  She started shaking and by the time she sat on bed threw up.  (not a new thing just one more thing to endure this evening.) Standing and especially walking take supreme effort. 

It hurts so bad, so so bad to watch her hurt.  Her entire chest just jumps with racing heart rate and accelerated shallow breathing.  Fevers.  Lots of fevers - between 102 and 104.5  Sometimes just one big long fever. 

Sponge bath followed which was then followed up by an allergic reaction ???  Where did that come from?  Severe itching.  Oh the sweetest thing.  She did not want a sponge bath - but said "would it be helpful if I sit on the swivel chair"  She was thinking of others having an easier time at it in spite of her having to get up again. 

In the night we had intensive care visit, xray and multiple specialists monitoring her closely.  This morning we had ultrasound (extremely painful on sensitive areas already without something pushing on them)  Lungs look good.  Fluid not collecting back again.  !!!

Doctors that had never before met her and met with us in the hall said that they were struck by her Grace and Sweetness.  Even in intense pain and nausea with so many many symptoms she is sweet. 
She expresses Thanks for kindness extended to her.  She is so cooperative and helpful - holding still when that is agony - turning to certain positions for ultrasound pushing on her - standing on a scale to weigh - iv lines - drawing blood - feeding tube - lung draining tube - oxometer sp? to measure oxygen and heart rate  - oxygen tubes in nose.........it goes on and on.

Oh, she also cleans her own g-tube.  Feeding tube inserted Monday before last - the provides care to that site knowing how gentle and how much pressure to put.  Amazing.  Absolutely Amazing.

Scripture of the day:  Ether 12:27
 And if men come unto me I will show unto them their weakness. I give unto men weakness that they may be humble; and my grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them.

The Lord is helping, sustaining, strengthening us every step of the way.  Many people express that they wouldn't be able to do this.  When faced with it - you can.  You can because of Christ. 

Philippians 4:13  I can do all things through Christ which strengtheneth me.

Tender Mercies

Have you seen the hand of The Lord in your life today?

Hope You Know Video

This life is not always easy, nor was it meant to be.; it is a time of testing and proving. At times we may feel to say, Hope ya know I had a hard time, we can be assured that Jesus Christ is there and we are safe in His loving arms. 

http://youtu.be/wz41YxNiHEg

Surrounded by Love

Between the people we've been blessed to meet here and all of our friends and family members, we have felt such amazing support through this.

One thing that truly inspires peace is the sacred hymns and children's music of the Church of Jesus Christ of Latter-day Saints. The music and words truly reach out and fill the empty spaces in our hearts.

The words of these songs have brought such a lift to us.

We'll Bring the World His Truth

1. We have been born, as Nephi of old,

1. 1. To goodly parents who love the Lord.
      We have been taught, and we understand,
      That we must do as the Lord commands.
   2. We have been saved for these latter days
   To build the kingdom in righteous ways.
   We hear the words our prophet declares:
   "Let each who's worthy go forth and share."
2. 3. We know his plan, and we will prepare,
   Increase our knowledge through study and prayer.
   Daily we'll learn until we are called
   To take the gospel to all the world.
   
   
   4. We are God's children, we have received
   The blessings promised to Abraham's seed. 
   We'll share the gospel this is our quest
   till every nation on earth is blessed. 
   
   
   
   
   1. Chorus
      We are as the army of Helaman.
      We have been taught in our youth.
      And we will be the Lord's missionaries
      To bring the world his truth.

1. 
   
   • play

   00:0

   00:00

   
   
   • 
     

I can be a missionary now!

River plans to be a missionary someday. It is more than wanting to emulate the examples that have been set for her by parents and grandparents and others, it's something she has always talked of. When she was younger she used to save her money just for her missionary fund. Seeing missionaries at work, especially sister missionaries, brings a smile to her face.

When the sister missionaries came to visit River here at PCMC, it was a remarkable experience. It definitely boosted her spirits and she will always treasure those moments. These are the things that manifest to us, the tender mercies of The Lord.

Finding JOY in our journey

Beautiful River Joy was diagnosed with liver cancer just over a week ago now. As we all have sought for understanding, it has become very clear that this is not as much about all of us as we think. This is a very special part of River's mission. We have completely turned our hearts to God as we help River in her journey. Our Heavenly Father is so mindful of each of us. He knows the desires of our hearts and our deepest sorrows and pains. River truly wants to serve Him. It shows in everything she does.

Being at Primary Children's Medical Center is indescribable. Countless miracles surround us and continue to lift our spirits. I cannot even count the multitude of small tender merciesThe Lord has sent.

I do not mean to say this has been easy in any way. This journey has been excruciating. But River's middle name being Joy was not coincidental. Putting our faith to this test, not losing sight of our priorities, enduring trials with patience and love for others will surely bring great joy, if not now, then when it matters most. Our Heavenly Father is full of love and compassion and His Son has made His grace available to us. He will not leave us comfortless and He keeps His promises!

On Sunday, September 7, we were able to worship together and attend meetings as a family. It was so nice to be altogether!

The hymns we sang there seemed to speak to me. We sang Hymns 3 "Now Let Us Rejoice"  and 171 "With Humble Heart."  The words brought such comfort.

        Now Let Us Rejoice

        Now let us rejoice in the day of salvation.
        No longer as strangers on earth need we roam.
        Good tidings are sounding to us and each nation,
        And shortly the hour of redemption will come,
        When all that was promised the Saints will be given,
        And none will molest them from morn until ev’n,
        And earth will appear as the Garden of Eden,
        And Jesus will say to all Israel, “Come home.”

        We’ll love one another and never dissemble
        But cease to do evil and ever be one.
        And when the ungodly are fearing and tremble,
        We’ll watch for the day when the Savior will come,
        When all that was promised the Saints will be given,
        And none will molest them from morn until ev’n,
        And earth will appear as the Garden of Eden,
       And Jesus will say to all Israel, “Come home.”

        In faith we’ll rely on the arm of Jehovah
        To guide thru these last days of trouble and gloom,
        And after the scourges and harvest are over,
        We’ll rise with the just when the Savior doth come.
        Then all that was promised the Saints will be given,
        And they will be crown’d with the angels of heav’n,
        And earth will appear as the Garden of Eden,
        And Christ and his people will ever be one.

We also sang 171 With Humble Heart

1.	With humble heart, I bow my head
	And think of thee, O Savior, Lord.
	I take the water and the bread
	To show remembrance of thy word.
2.	Help me remember, I implore,
	Thou gav’st thy life on Calvary,
	That I might live forevermore
	And grow, dear Lord, to be like thee.
3.	To be like thee! I lift my eyes
	From earth below toward heav’n above,
	That I may learn from vaulted skies
	How I my worthiness can prove.
4.	As I walk daily here on earth,
	Give me thy Spirit as I seek
	A change of heart, another birth,
	And grow, dear Lord, to be like thee.

"