Saturday, March 28, 2015

Surgery Success!

Surgeon Myers:  If anyone can pull through this, River can!!  Look at what she's already come through"  She has not only endured it, she's come through cheerfully and with spirit.
Just as they were pushing in her anesthesia for 14 hour surgery.


Moxie - definition - energy, pep, courage, determination, know-how
River with her make a wish key - it is also special because it looks like the key on Indian in the Cupboard.  We are currently reading #5 of the series.

Left:  Surgeon that has done her biopsy, embolization and dye markers
Just to the right of him - Anesthesiologist

River was under anesthesia for 14 hours - One and a half hours to place dye in the right lung where one of the tiny spots of cancer was - surgeon said it was deep and so small she couldn't feel it.  She was so glad they had pre-marked the spot.  He also marked the vein in the liver that needed to feed the part of liver that was saved.
They also had to place numerous IVs - including one in her neck that goes directly into the jugular. River's port was also removed - it was right in the area they needed to work on.

The blue is cancer - where the tumors were.  6 nodules were also removed from her right lung.
The yellow is what came out.  The tumor furthest down was removed first and then the rest was taken out as a big chunk - lobes 5, 6 and 1 were saved.  The vein to them is not excellent - but it is there :)
The hepatic vein was also an unknown if it was able to be saved - the cancer was surrounding it.  She was able to shave off bit by bit and had 2 mm before the vein.
Notice the blue and yellow is quite a ways out of the border of the liver - the cancer had grown through the diaphragm and into the lower right and mid right lung lobes.  Surgeon also removed the diaphragm on her right side along with the pherenic nerve and the lower parts of her right lung.

This is a lot to ask a body!  Friday Drs and those checking on her have been amazed that her breathing tube is out!  They have said that a lot of kids don't really breathe well after surgery because it hurts too much.  This is amazing that without the diaphragm muscle on that right side and with all the lung work she is breathing okay on her own - with oxygen, but without the breathing tube.

It is a dance between pain and pain meds.  To give her enough so she is comfortable would be too much meds for her body and she would stop breathing.  To breathe is more important than being comfortable.  -
River looks like a spaghetti bowl with tubes and ivs and monitors....
She has 5 draining tubes - 2 for the lungs, 1 for her stomach and 2 more for the abdomen.  She has a PCA - a machine where she pushes a button every time she feels like she needs more pain meds.  It delivers a constant low dose and also when she pushes the button - it will only deliver it after 10 minutes have passed after the last dose, but a good gauge of how her pain is being managed as to how many times she is pushing the button.

How firm a Foundation kept running through my head as she was in surgery

  1. 1. How firm a foundation, ye Saints of the Lord,
    Is laid for your faith in his excellent word!
    What more can he say than to you he hath said,
    Who unto the Savior, who unto the Savior,
    Who unto the Savior for refuge have fled?
  2. 2. In ev'ry condition--in sickness, in health,
    In poverty's vale or abounding in wealth,
    At home or abroad, on the land or the sea--
    As thy days may demand, as thy days may demand,
    As thy days may demand, so thy succor shall be.
  3. 3. Fear not, I am with thee; oh, be not dismayed,
    For I am thy God and will still give thee aid.
    I'll strengthen thee, help thee, and cause thee to stand,
    Upheld by my righteous, upheld by my righteous,
    Upheld by my righteous, omnipotent hand.
  4. 4. When through the deep waters I call thee to go,
    The rivers of sorrow shall not thee o'erflow,
    For I will be with thee, thy troubles to bless,
    And sanctify to thee, and sanctify to thee,
    And sanctify to thee thy deepest distress.
  5. 5. When through fiery trials thy pathway shall lie,
    My grace, all sufficient, shall be thy supply.
    The flame shall not hurt thee; I only design
    Thy dross to consume, thy dross to consume,
    Thy dross to consume and thy gold to refine.
  6. 7. The soul that on Jesus hath leaned for repose
    I will not, I cannot, desert to his foes;
    That soul, though all hell should endeavor to shake,
    I'll never, no never, I'll never, no never,
    I'll never, no never, no never forsake!
Whistling before surgery - she had no fear.

 Reading Patrick McManus with Daddy - "Never sniff a gift fish"
Silver painted one hand - Summer the other



The morning before surgery - River wanted to play Clue Circus again!  We played it the night before and she wanted to get one more game in before surgery!  She loves mystery and trying to figure out the clues!
Diagram surgeon drew before surgery - where 6 lung nodules are and where tumors are and part she wanted to save.

River's diagram :)  Lungs and Liver Before and Now

Patrick McManus 
"Poof no Eyebrows"
and "Grasshopper Trap"





Fitted for hearing aids

River with her audiologist

I told her she is probably the first person in the history of ever to play a glockenspiel with a key and a mallet in her mouth!!

Glorious Day Headed into hopsital

We went to the Make-A-Wish Building the night before admit to hospital.  

With stars from wish kids - each star is a wish granted. 



Sunday, March 22, 2015

There is Sunshine in my Soul Today

Update:  Liver Surgery Thursday - 26th of March.
Major Liver Surgery to remove about 80% of her liver and part of lung.
It will be a very delicate and intensive surgery with a difficult recovery. 

We are very grateful to have this surgery as an option:  Several MAJOR Ifs had to line up to be able to take this step:
IF it can clear out of the lungs enough that remaining nodules are small enough and few enough to be surgically removed.
IF they can find a healthy chunk of liver
IF her body had good blood flow to and from liver.

We feel such peace knowing that we are in God's hands.  I know that he will give us the strength Thursday and meanwhile I haven't worried about it.  Our job is to help her be happy and healthy!  We can do that :)  


River felt so good the last time she was in the hospital for chemo!
She was riding up and down the halls on her IV pole - 
She was in the halls probably more than she was in the room.
We enjoyed sitting on the window bench at the hospital - in the sunshine - with a fantastic view of the city.



She made up several games in the halls with a throw up bag and medicine cups - 
catch, baseball, soccer, 



VIDEO:  River riding her IV poles in the halls

VIDEO IV Pole


Summer, River, Silver

Silver



Up the canyon for Family Night.
Daddy taught girls how to start a fire using magnesium flint and steel.
It was a good object lesson taking quite a while to start the fire - but what a neat memory that something great can take multiple attempts and then some more and then quite a few more.  They stuck with it until they had a little blaze.

Each one made their own fire and kept it going!

Take time for dates :)


The Lord is very aware of us and loves us individually - he is in the details!!
Waiting for us at the Ronald McDonald house was a thank you package from the San Diego zoo for River helping them and appearing on their zoo channel.  It was a polar bear because she LOVES them so much.  This trip we accidentally forgot "Mr Carrots" at home!  YIKES!
She had a polar bear to snuggle while away from home, and on the very time that we accidentally left Mr Carrots home.  


River with Rick of the Zoo Channel.
What Rick said about experience on Ronald McDonald Facebook page:
Had a wonderful time at @Ronald McDonald House of the Intermountain Area making friends with River. We had great conversations about polar bears (one of her favorites), cheetahs and elephants. She even had a chance to preview some of the content on the San Diego Zoo Kids Channel - and good news, she gave it her approval!
After thought: I wish you all could meet who I meet and see what I see. As most of you know I am in Salt Lake City right now. We are preparing to launch another event for San Diego Zoo Kids channel here for the Ronald McDonald House & Primary Children's Hospital. Today I was fortunate enough to meet 3 families, each with children going though something different, something challenging. One little one just wanted to play ball with me, another one, (River in the pic) had a great love of polar bears thanks to her family taking her to the SD Zoo for vacation long before she was sick. Another little one wasn't feeling too well, and just wanted to sit next to me and look at the animal pictures I have on my phone. I can't help but get emotional after a day with these families. All dealing with so much, and all fighting the illnesses so bravely. And don't even get me started with the volunteers, doctors and nurses who bravely stand by the side of these families and these kids fighting the good fight with them. I am grateful for my opportunities, I am grateful for good health and I wish you could meet who I met and see what I see.

River, Silver, Summer, Tanzi

GeoCashing!




Arizona Snow shovels

Silver's Snow Beast she is hunting

River had a toothache ontop of it all!
Dentist came to her primary children's room and took x-rays - Permanent teeth pushing up but baby teeth not falling out.  Dentist says:  needs to come out now.  Oncologists:  No Way!  No immunity and very low platelets.  A few weeks after this River's platelets and immunity were up and the tooth came out on its own.  "Faith in the Lord includes Faith in His timing." - Neal A. Maxwell

Catching snowflakes


More window seats!  I LOVE WINDOW SEATS!
Ronald McDonald Room - window seat tea party!

River, Summer, Silver, Tanz

River's view of the world:
There is beauty everywhere!

Ronald McDonald Craft room:  Making Flubber!


I play while River sings.
This time:
"There is Sunshine in my soul today!"

Lyrics

  1. 1. There is sunshine in my soul today,
    More glorious and bright
    Than glows in any earthly sky,
    For Jesus is my light.
  2. (Chorus)
    Oh, there's sunshine, blessed sunshine
    When the peaceful happy moments roll.
    When Jesus shows his smiling face,
    There is sunshine in the soul.
  3. 2. There is music in my soul today,
    A carol to my King,
    And Jesus listening can hear
    The songs I cannot sing.
  4. 3. There is springtime in my soul today,
    For when the Lord is near,
    The dove of peace sings in my heart,
    The flow'rs of grace appear.
  5. 4. There is gladness in my soul today,
    And hope and praise and love,
    For blessings which he gives me now,
    For joys "laid up" above.


Summer has a knack for finding hearts - she finds them everywhere!
Little heart rocks, and here a chocolate heart in the bag of chocolate covered nuts!

Silver, Tanz, Karin, River


I Have learned SO much from this kid on how to embrace every day.  How to LIVE in a happy manner always looking for the silver lining and secure in her heart knowing that she is in God's hands.

Song on You Tube:
David Archuleta:  GLORIOUS from Meet the Mormons

https://www.youtube.com/watch?v=GytW_rgr0RM&list=PLKNMaufnM7Tp_PtYzUM1HBHldK9pJ9BL6&index=2

Lyrics:
There are times when you might feel aimless
And can't see the places where you belong
But you will find that there is a purpose
It's been there within you all along
And when you're near it you can almost hear it.
[Chorus:]
It's like a symphony just keep listening
And pretty soon you'll start to figure out your part
Everyone plays a piece in their own melodies
In each one of us, oh, it's glorious
[Verse 2:]
And you will know how to let it ring out as you discover who you are
Others around you will start to wake up
To the sounds that are in their hearts
It's so amazing, what we're all creating
[Chorus:]
It's like a symphony just keep listening
And pretty soon you'll start to figure out your part
Everyone plays a piece in their own melodies
In each one of us, oh, it's glorious
[Bridge:]
And as you feel the notes build high
You will see
[Chorus:]
It's like a symphony just keep listening
And pretty soon you'll start to figure out your part
Everyone plays a piece in their own melodies
In each one of us, oh, it's glorious

Acts 17:27
That they should seek the Lord, (JST) If they are willing to find him, for he is not far from every one of us.