Precious Family Video: Created by Dani with Lemon Lily Photography

Update:  Got some tough news yesterday. Met with the head liver surgeon here at Primary Children's Hospital. After 20 years she has "retired" to study liver cancer full-time with other specialists around the world. (After she met with us she was leaving on a plane to Toronto to an International Liver Cancer conference on Liver Cancer. She was the speaker on the latest research from Japan, Germany, France and UK.) She said that unfortunately, instead of being the "good" Hepatoblastoma we thought it was, and not the Hepatocellular Carcinoma, that River has "Hepatocellular NOS" (not otherwise specified) meaning it is abnormal in the world of already abnormal liver cancer.  It is both Hepatoblastoma and Hepatocellular.  

She said it is the second case she has seen in 20+ years and that if you were to talk to 100 Liver cancer doctors only 2-3 would have heard of it. Her best explanation was that it is like Neapolitan ice cream with vanilla, chocolate and strawberry mixed together. The chemo may knock out the chocolate and vanilla, but leave the strawberry etc. It has mixes of both the hepatoblastoma and Hepatocellular which respond differently to the chemo. She is prescribing the heaviest schedule of chemo she can throw at it for the next 3 months through the end of December and our hope and prayer is we can get it out of the lungs so that we can get on a transplant list as they will not currently let her get a transplant with cancer spread to other areas. 

Full removal and transplant look like only options so we will proceed with chemo until the end of the year and then check CT scans and do biopsy's to see if we can get transplant eligible  

“Come unto me, all ye that labour and are heavy laden, and I will give you rest.  Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls.  “For my yoke is easy, and my burden is light” (Matthew 11:28–30).

Otherwise doing great. Onward and upward. Thanks for everyone's love and support. 

River's hair came off yesterday in a clump and she likes it much better without the itchiness! Much improved! She likes the "Uncle Merlin" look 



VIDEO:  Click on the above picture to go to the video of our family pictures taken at the Primary Children's Hospital. 

This video is a very tender mercy of our Heavenly Father to our family.  The pictures were taken Sunday, September 7th.  We started this journey on Tuesday, September 2nd.  That week was full of heartbreak, tears, togetherness, courage, grief, hope, faith, love.

River went downhill pretty fast - that week was chock full of support, friends, family, new hard experiences, and pain.

Sunday was an AMAZING Day!  River walked all the way to church - in the building but still quite a treck for a sick kiddo.  She then was able to walk to the community kitchen to make potato salad with her sisters and mom and dad and the sister missionaries!  (video and pictures coming)

A sweet friend arranged for a photographer to come to the hospital.  Summer, Silver and Tanzi were able to visit Saturday and Sunday.  The day after these pictures the hospital put a ban on visitors under the age of 14 - it is a really nasty flu season and we want to protect all the kiddos here.  What an amazing blessing to have been able to have the sisters here!

River was pretty worn out by the time for pictures.  She was hurting and I was afraid the pictures would be painful to look at.  But when I see them, her beautiful spirit is shining through.
She was cute as she'd go play peek-a-boo with Tanzi to help her smile.
She had the worst pain attack that night, excruciating pain and such a hard time breathing.  These pictures came at a price.

Monday - just the day after - she had surgery to place a feeding tube in her stomach and a port for IVs and blood draws in her chest.  We also started Chemo that day.
I'm so grateful to have these beautiful reminders of
God's Mercy, River's Strength, and Sister's love.

Sleep On

Thursday and Friday were full of 3 doses of Chemo: Doxyrubicin, Cisplatin over 24 hours followed by another dose of Doxyrubicin.  A cancer survivor we know calls Doxy the "Red Devil"  

Saturday and Sunday were rough!  We were discharged Saturday being able to "deaccess" her port.  This means she is not hooked up to IV through her port - horray!  BUT it means that everything needs to go through the g-tube with limited tummy space, this is challenging as we had to put in high amounts of water to flush the chemo out!  We found that if we kept it in small amounts every 12 minutes she could get it to stay down.  In the middle of the night she had lots of nausea and throw up.

After this morning she has been able to keep everything down - but sometimes that almost is worse because you don't have the relief that comes with having it out! 

It is just a LONG nausea ride with lows and even lowers and some lower stills.

I massage her back a lot and read "Josephina" our American Girl book series we are currently reading.  We watched the movie "Legacy" about the Mormon pioneers.  

Things that have helped with River's nausea:  smelling Spearmint.  We have it diffused in the air and also in the above picture on some cotton balls.  Orange is also good for anti-nausea.  We also have a fan to fan her with.  She also says it is better if she is laying down than sitting up.  And if she lays down, puts her leg up with the other leg ontop of that she presses her knee into her forhead and sings herself a primary song.  

Sleep is such sweet release! Sleep on dear River, sleep on!

Luke 1:37 For with God nothing shall be impossible.

Caring Bridge Photos

L-R Tanzi, Summer, River, Silver
Pictures taken at the hospital.

River Update:  Handling this dose of Chemo very well!  Minimal nausea so far this dose and no throwing up!!  Medicine is amazing!  Every side effect of chemo has a medicine to try to ease the effects - pain, nausea, wigs, hats, medicines to protect her heart as much as possible.  This is a heavy dose of 2 different kinds of Chemo given over 2 days. Many nausea side effects show up 2-3 days after treatment.  River is courageous and strong and does everything she is asked to do.  It is hard for her to get up and get moving - her legs hurt a lot and so does her back, but we know that movement helps everything - fluid from not building up in lungs, feet and other parts of her body, the chemo to be able to flush out, muscles to stay strong, etc.  Many "out of bed" sessions end in tears and sometimes the best and most she can do is just to stand next to her bed or to change from bed to sitting in rocking chair. We celebrate every victory - no matter how small.  Every day we do 1 sponge bath or shower  2 times brushing teeth and 3 out of bed times.  Our 1, 2, 3s.

My friends and family have helped tremendously in setting up support for River and us and everyone. I feel as though this is everyone's journey - so many people love and care for River - even those she has never met.  Thank you for being a part of our adventure in trust and faith.
A big thank you to those who have supported us!  It is all so appreciated and we have shed many happy tears to have connected with you on such a personal level!
I haven't yet figured out how to get pictures from our phones onto my blog - so until then, all of these photos have been lovingly uploaded by Ginger and Lena.  Thank you!!
These pictures are from the caring bridge site.



River outside of Primary Children's


Sisters!





Picture that travels with River from her room in Primary Children's to our Ronald McDonald house!

Danika:  Amazing babysitter and friend!  With matching bracelet that she made with River.

Ronald McDonald house

Blanket from church held at the Hospital:  Each girl got one and Tanzi especially loves hers and packs it around and rubs the flanel tabbies across her face.


Proof that Colt can sleep ANYWHERE!  I am so jealous!




Jelly Bellies!


Summer and Daddy









SO love the decorations in our room - Rainbow put together by River's 3rd grade teacher Jane Cluff.  A hand made by everyone at the school - students, teachers, janitor, principle, everyone!







They have so many resources available here - we are grateful that she now feels up to doing crafts, games, cards, etc.  It clearly showed me how sick she was when my crafty girl wasn't up to doing anything for weeks and weeks and some more weeks after that.







Board game that River invented with Danika

Nail Polish!


Family spur of the moment, unplanned, wonderful trip to California!  We returned home on Sunday night and were up at Primary Children's Tuesday.  How grateful I am for this sweet memory!
River, Silver, Daddy, Summer, Mommy, Tanzi

Fly Fishing!

Our 1, 2, 3s as a family:  1 Touch - hug, squeeze, footrub, something to connect physically.  2 devotionals.  Think short and sweet:  Morning - scripture, prayer and primary song.  Evening:  Friend magazine article, prayer and primary song.  3 I love yous.

ALma 26: 35-37  Now have we not reason to rejoice? Yea, I say unto you, there never were men that had so great reason to rejoice as we, since the world began; yea, and my joy is carried away, even unto boasting in my God; for he has all power, all wisdom, and all understanding; he comprehendeth all things, and he is a mercifulBeing, even unto salvation, to those who will repent and believe on his name.

 36 Now if this is boasting, even so will I boast; for this is my life and my light, my joy and my salvation, and my redemption from everlasting wo. Yea, blessed is the name of my God, who has been mindful of this people, who are a branch of the tree of Israel, and has been lost from its body in a strange land; yea, I say, blessed be the name of my God, who has been mindful of us, wanderers in a strange land.

 37 Now my brethren, we see that God is mindful of every people, whatsoever land they may be in; yea, he numbereth his people, and his bowels of mercy are over all the earth. Now this is my joy, and my great thanksgiving; yea, and I will give thanks unto my God forever. Amen.

Family visit - Primary Children's

Update:  GREAT NEWS!!  AFP (Alpha feto protein) is a tumor indicator in the blood.  Normal levels are around 30.  River's AFP beginning of September were 1,444,000.  Yes, you read that right!  One million, four hundred fourty four thousand!  WOW!  AFP is now 180,000.  79% drop!!!  Encouraging that chemo is having an effect.  As I understand it AFP is a hormone that is secreted by active cancer cells. 

L-R  Summer, Silver, River with Daddy in front of this mural with Jesus and children gathering around him infront of the world.  This picture was after church.  The sacrament service here is so beautiful!  It is held in the hospital with family and friends and when they can patients themselves.  River was able to attend the first week walking, and the 2nd week in her wheelchair.  

Silver Summer Tanzi and River each got a soft blanket after church that reads "And he took their children, one by one, and blessed them."

Silver says She is the one with the blindfold, Summer is at the very right, on Mommy's lap.  Tanzi is on Jesus' lap and River is on the very left.  Daddy is the one kneeling just to the right of the World. 

We have been blessed "one by one".  The gospel and the Savior's ministry is "one by one" very personal.
This scripture comes from 3rd Nephi 17.

20 And they arose from the earth, and he said unto them: Blessed are ye because of your faith. And now behold, my joy is full.

 21 And when he had said these words, he wept, and the multitude bare record of it, and he took their little children, one by one, and blessed them, and prayed unto the Father for them.

 22 And when he had done this he wept again;

 23 And he spake unto the multitude, and said unto them: Behold your little ones.

 24 And as they looked to behold they cast their eyes towards heaven, and they saw the heavens open, and they saw angels descending out of heaven as it were in the midst of fire; and they came down and encircled those little ones about, and they were encircled about with fire; and the angels did minister unto them.

 25 And the multitude did see and hear and bear record; and they know that their record is true for they all of them did see and hear, every man for himself; and they were in number about two thousand and five hundred souls; and they did consist of men, women, and children.

Silver holding the dolly that she got from the hospital - rag doll that she can color face and hair on.  Each girl also got their own little dr kit and River showed them how everything works.  They had a hard time leaving "Rivy".  Summer said "I  can take care of my Rivy"  She wanted to go up and be her nurse!  

They went around the cafeteria and found several pennies and dimes.  There is a waterfall out front that they threw their pennies in for wishes.  Each of their wish "I hope Rio gets better soon!"  Summer's socks say "Fearless" and Silver's "Hope"

Tanz with Momma and Summer's sheep.  Summer got this sheep on her birthday in California when we toured a cheese making factory.  We returned home from CA Sunday night and came to Primary children's that Tuesday.  Summer LOVES lambs!  Summer has let Tanzi pack around her lamb that means so much and is so special to her.

River could order whatever she wanted.  We ordered a nutella dinner:  Bananas, Apples, Popcorn, etc. all to be dipped in nutella.  John, our friend that answers the phone when we call in to place a food order said that this was the "most fabulous dinner ever requested!"  John has the best personality and is fun to talk to.  River says "He sounds like he has a nice personality.  This was the last meal River has had.  She has eaten/drank very little in the last month.  Nauseous and extreme sore throat.  We are very blessed she has her g-tube.  The surgeon said that if her tumor was any larger he wouldn't have been able to place it!

Summer with Paca

Summer and Silver in Rio's room.  The day after this was taken the hospital had visitors restricted to age 14 and older.  Nasty flu season!  They usually start in November, and it has started in August!

Visit from cousin Tomi
Beautiful Memories!

September Primary Childrens Summary and Pictures

Update: 

We were able to take River to Ronald McDonald home last Friday.  She was on 2 liters of Oxygen, and never ran a fever over 100 the whole time.  She was able to stay until Thursday, October 2nd. 

I went down to visit Silver Summer and Tanzi from Wednesday night to Sunday night. 

We had the greatest time!  We talked and played, laughed, cried and loved.  Summer will cry and say "you remind me of River and when I remember Rio I cry.  She loved to look at the pictures on my phone and spend some time through the pictures with "My Rivy"

It was harder for me to be at home with all of her things and our home with so many wonderful memories.  The flowers in the yard, the kitchen sink, her bed and books.

Silver's prayer:  Please father shine down on us and listen to our prayers. 

*We went to Library Time:  Normal Life!!  Cuddling together during story time, doing crafts together and playing "Go Fish!"

*We rode bikes in a subdivision on real sidewalks in full pouring rain! 

Silver said "This is the Best Day Ever!!" 

*Went swimming in the bathtub with our swimming suits on :)

*Summer:  "Jesus will protect River"

*Went to Kanab homecoming parade and girls got to get candy!

*I took Silver and Summer to Zumba - It was Summer's first time:  "I'm 4 now!!"  It was such a nice time and great release. Silver was so cute dancing to the music - the whole time and with new songs she did her very best!

While I was with the girls, River and Daddy explored the Ronald McDonald home.  It is a lovely home with wash room, huge kitchen, family rooms, a meditation room, quiet places for sitting and reflecting, family rooms with books and movies.  Daddy and River went on a walk (in wheelchair) and found chestnuts. 

I took over while Daddy took girls back home.  River and I went on 2 walks outside with wheelchair.  Tuesday it was very gray and we stayed close to home so it didn't rain on us.  We did find a big chestnut tree and took a nut home.  River held it and held it.

The next day we went exploring for chestnut trees.  It was quite nippy out but we decided to get out anyway.  As soon as we got to the sidewalk the sun came out.  It warmed up and was such a beautiful day with blue skies.  We walked and walked - tricky going over the old sidewalks in a wheelchair but it was so wonderful and she was so up to the nature adventure!

She was cute noticing everything around her:  The bark of a big tree how the colors and shades were different -   The orange berries on shrubs, the windows, car colors, etc.  So very observant.

We didn't find a single chestnut tree so went back to the one we found the day before.  We picked up lots of chestnuts to make checker pieces out of.  We also found chestnut pods - one held 2 chestnuts and the other had 3 chestnuts in it.  One of them was so pretty with wood grain.  

Silver and Summer were so cute with River on their visit!  They were very good girls, very quiet and very thoughtful.  We ate meals in the big kitchen together and they were so excited about the pop machine with lots of pop choices for $.25!  We watched tv in the big family room and read books together.  They loved taking turns in Rivy's wheelchair and thought that was great fun.  It is really fun when we all get to sleep in the same room together.  Silver and Summer made "nests" on the floor and cuddled together.  

We also moved rooms while Silver and Summer were here with us.  We have the most lovely room at the Ronald McDonald house with large windows!  It is a relaxing haven of peace amid uncertainty and grief.  We lovingly call it "Home"

River with her doctor kit.  They gave her a doll to make a face/hair on with a bag of nurse equipment.  River put red tape on syringe - for taking blood.  On the doll's tummy you see a medical cup upside down.  She had decorated it to look like a heart that they checked on an ultrasound with red and blue veins and arteries.  Daddy is holding an empty water bottle that represents her iv bags.  Very creative.  She enjoyed sharing with her sisters their dolls and teaching them what everything does.

Cap from Kanab Tennis :)





Oxygen in her nose.  Buck on the wall - underneath buck is River and Daddy with their deer last fall.


Before she got her g-tube.  She can no longer sleep on her side.  Her right side has her port for IVs and blood draws.  The left side has her g-tube.  Oh how grateful we are for the g-tube!  She hasn't been able to eat or drink much at all for the last 29 days! Some days she tries a bit of an orange or a sip of pop.  My definition of "great day" has drastically changed.  Our GREATEST day of eating included 2 small sips of water, a couple licks of popsicle and a sucker. 
It took a few days for g-tube to heal enough to put water through.  It started bleeding a lot and had to give it another few days rest.  Chemo targets fast-growing cells.  It kills the good right along with the bad.  The entire tube from mouth to the other end - she has had a very sore throat and has a hard time even swallowing spit.  She says "I figured it out!  When I push on my chest like this it helps me and is a bit easier to swallow!"  The sides of her mouth on the creases at the sides of the lips was cracked and sore.  Canker sores in her mouth.
Intense Nausea...vomiting...diahrea...We found that a fan helps with nausea.  Just having that cool breeze on your face does feel good.  We like foot baths and smelling spearmint :)  Orange and Spearmint are such cheery smells!


*Bathroom breaks are tricky with how much fluids they are pumping into her to flush the chemo - she needs to go often and a lot!  SO many cords going into her!  3 IV lines for fluids, chemo, etc.  G tube for feeding, electric cord (for feed tree), and chest tube cords with multiple lines going to a box to collect fluid.  It would wipe her out completely to get up to go potty.
*A lot was thrown at her at once:  Pain from tumor, surgeries for biopsy, g-tube and port insertions, Chemo and then chest tubes.  Throw in there several x rays, ultrasounds (which are super ouchy as they have to touch the painful spots with very limited lung capacity.  Wipe out all immunity and white blood cells with several transfusions of blood and platelets.  Add in sore throats and high fevers...just to name a few of her challenges this month.


First night in the emergency room.  So brave.

River's favorite before surgeries and chemo:  Nutella, strawberries and root beer.


Before Surgery for lung-tube.

Rainbow behind daddy:  All the kids, teachers, janitor and Principal from River's school put their hands together to make a rainbow.  It brightened up her room so much!

Giving her back a rest!

One of my favorite pictures!  A trip down to Ronald McDonald family room in the hospital to play "Old Maid" with Mommy and Daddy








This lego piece was particularly challenging.  River:  "If I can do cancer I can do legos!"





Jesus the Christ knows us and knows how to help us through this:
Alma 7: 11 And he shall go forth, suffering pains and afflictions and temptations of every kind; and this that the word might be fulfilled which saith he will take upon him the pains and the sicknesses of his people.

 12 And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities.