Sunday, September 21, 2014

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 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.


  1. Oh my precious Friend!This will be a treasure for generations to come!! No words to express how I feel about this journey. But I know that you are right, it is all possible to endure because of our Savior!

  2. Your family is so dear to ours! We have all been missing you!
    “Faith is not so much something we believe; faith is something we live.”
    ― Joseph B. Wirthlin

  3. Thank you so much for sharing these tender mercies. You are in our constant thoughts and prayers! What a stalwart example and valiant servant little River is for us all. Lots of prayers and love from New Mexico!