Resurrecting the Blog

Resurrection…defined, it means

res·ur·rec·tion

[ˌrezəˈrekSH(ə)n]

NOUN

1. the action or fact of resurrecting or being resurrected.

   "the story of the resurrection of Osiris"

   synonyms:

   raising from the dead · restoration to life · rising from the dead · return from the dead

   • (the Resurrection)

     (in Christian belief) Christ’s rising from the dead.

   • (the Resurrection)

     (in Christian belief) the rising of the dead at the Last Judgment.

   • the revitalization or revival of something.

     "the resurrection of the country under a charismatic leader" ·

It’s an appropriate word for many people at this time of year as Easter is the remembrance of resurrection. I feel like this is more of a revival so I will go with the revitalization of something.  I am going to be completely honest here.  This will be an insanely personal blog post for me and one of the most difficult things I have ever written.  For those of you who follow me on FB, you have a small idea of what late 2017 and 2018 were like for me and my family.  For those of you just now tuning in…lets just say life tilted off its axis for me and my family in November of 2017 and the blog took a back seat.  I needed a year to kind of readjust, reevaluate and frankly…do the the whole freak out and then sit back and deal with it all.  That meant walking away from the blog for a time.  It also meant….walking away from collecting and photography for a time.  I just needed to get re-centered.

Why did I need to re-center?  In a word…Cancer. 

Before the questions come, not me.  It was never me and I wish to God it had been me,but it wasn’t…it was infinitely worse.   It was one of my children.  You might as well have taken my heart and ripped it from my body.  When you have no heart, it’s hard to create.  It’s hard to look at anything and find the beauty and wonder of it.  All you see and feel is relentless uncertainty and  pain.  I was wounded and scared and I needed to heal.  Thankfully, through the strength, love and wisdom of amazing doctors, friends, family and the power, love and grace of God, our story continues, our daughter’s story continues and for that I offer unending thankfulness.

I am going to go into specifics now because I feel like this is a chance to give a testimonial and a public service announcement.  I would be happy if the last year and a half of our experience could possibly help and guide another family facing similar circumstances.  If I can offer anything to anyone…specifically parents or caregivers….its this.  If you think something is odd, go check it out.  Don’t wait.   If your child complains of  something odd, go have it checked.  Don’t wait.

Background:

In mid 2017 our daughter Megan came to me and complained of a “stitch’ in her side that persisted for more than a few days.  She was 17 at the time and was dancing every day of the week so we wrote it off as some minor dance strain.   It went away and we thought all was well.  A few months later, she complained again of a “stitch” in her side and we ( by the guidance and grace of God) decided to have it checked out with her pediatrician.  We had an ultrasound performed the day after Thanksgiving 2017.  Three days later, we were told our daughter had a large abnormal mass in her liver and she needed an MRI.  The MRI confirmed that the mass in her liver was a very rare liver cancer -  Fibrolamellar hepatocellular carcinoma (FHC)

Doctor #1 told us that the tumor was inoperable and that there was nothing that could be done.  Second opinions are always a good idea and in our case, it saved our daughters life.    Doctor #2 told us that he believed the tumor could be removed and that it would be difficult.  Doctor #3 told us he believed the tumor could be removed and that it would be difficult. On December 14, 2017 doctors 2 and 3 ended up performing the 9 hour surgery necessary to save Megan’s life.  Over 30% of her liver was removed.  Our thanks for the skill and knowledge of the Doctors at Seattle Children’s Hospital and University of Washington Medical Center are without limits.  They were and continue to be the best team of doctors we could ever wish to have for Megan’s care.

Right after Christmas of 2017 our prayers were answered again when the pathology of all 7 lymph nodes removed during Megan’s surgery showed no signs of cancer.  It had not spread and her chances of surviving  were greatly improved.  There is no treatment or cure for this cancer.  The only chance of surviving it is 1) if the cancer has not spread outside of the liver  2) if the tumor can be successfully resected (removed) and 3) if the cancer doesn’t come back.  This type of cancer typically has no symptoms until the tumor has grown so large that it is inoperable and/or has metastasized to other parts of the body.  It affects mainly children and young adults.  We had caught it early.  Praise The Lord!

2018 was a year of quarterly rituals we affectionately  called “scanxiety”.  Each quarter brought the requisite MRI and sometimes CT scans and I am happy to report all have been clear and clean.  No sign of regrowth of the tumor.  I am also very happy to report that Megan bounced back as only a young and healthy teenager who has danced for most of her life does.  By May of 2018 she performed all of her dances AND her senior solo at her dance school and in June she graduated with honors from High School and was accepted into University of Washington as a pre law student.  She continues to grow and thrive in college while maintaining close contact with the team of doctors that monitor and are studying this rare form of liver cancer. 

We don’t know what the future will hold but for now all is well and that is good enough for me.  We ( the entire Berry Clan) want to say a huge “Thank You!” to the collector community who absolutely enveloped us with love and care.  It was one of the most amazing things I have ever experienced in my life.  It was the essence of “community” made manifest and we could not begin to thank everyone enough.

(Photo is courtesy of Stan and Peter from 2018 Barbie Convention in Arizona.  Thank you so much for this!)

Now, I am finally starting to  feel like I can and want to pick up the camera again and create.  Look for more blog posts soon and “Thank You” for sticking with me during the hiatus.

-Rebecca

April 6, 2019 | Categories: Uncategorized | Tags: Cancer survior story, Childhood cancer, FHC, Fibrolameller hepatocellular carcinoma | 63 Comments