Saturday, October 18, 2014

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.

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