Results from Liver biopsy on Wed Sept 18th, 2013- update

First THANK YOU to all for the PRAYERS, emails, calls, texts...they truly do help more than you can know!

Rays biopsy on Wed went well, no issues

His foot is healing...he is hobbling around now with no crutches and was actually able to LOOSELY put his shoe on today...that's improvement...that hasn't happened since Monday night.

Dr. Smith sent me an email yesterday morning with preliminary results. Rays biopsy and case will be discussed further next Wednesday when they meet each week as a panel of doctors to discuss cases further and come up with plans of action. I am including below just what Dr. Smith sent to me yesterday

Ray, Janet:
 The preliminary report of the biopsy is available and has been discussed with me.
 1.       There are NO changes concerning for rejection – NONE.
2.       There is change – inflammation (grade 2), and scar (stage 2) – that is the result of hepatitis C virus injury. THIS IS UNCHANGED FROM JULY 2013, AND AT THE MILDER END ON BOTH CASES.
3.       There is NO other pattern of injury present.
 The only thing at present is whether to put the cyclosporin dose up a little, and I am still thinking about that.
 Otherwise, no changes.
 Screening of patients for the study appears to have been slower than anticipated, and Duke is only just about to be finished with the IRB process and therefore ready to start screening folks. This delay works in your favor.
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All in all the results were positive. No rejection and when he speaks of cyclosporine that is Rays anti rejection drug- what to do with the dosing.
We should be hearing in the next week or two about screening for the trial- the delay works in Rays favor- every site gets activated at different times....Carolina has already begun, Duke's activation has come late- again it works for our favor.
Our prayer now- RAY GETS IN THE TRIAL and his liver CALMS DOWN, the liver numbers can come down some (if they are too high and out of whack he will not be considered for the trial), the HEP C CALMS down and gives it a rest for the time being....he is now on NO treatment for hep C which I am sure is WHY his numbers skyrocketed now- since it is no rejection.
This is CONSTANTLY a balancing act....my faith has been tested this week but I remind myself it is not in my hands or Rays, it is not in our timing. The lord DOES have a plan and he isn't done with Ray yet. THANKS to those who remind me of that when my faith is SHAKEN! My friend Cameron left me a sweet, sweet message this week and left me this verse: Psalm 9:10..."and they that know thy name will put their trust in thee: for thou, Lord hast not forsaken them that seek thee." Ray and I put our trust in God, it isn't always easy or pretty, but our trust is in him. HE will take care of Ray, this horrible virus, our family. Remind us of that dear friends when we are low.
Thanks again to all. Keep the prayers coming and we will update when we know more about the evaluation and trial. - Ray and Janet

END of SUMMER update! Sept 2, 2013

Hi all, SO SORRY this update has taken SO LONG! When August strikes my time grows SHORTER and shorter and my "to-do list" grows and grows! We all had a GREAT summer though. Lots of fun things we did together, lots of family time, I got A LOT done (as opposed to last summer!) and there was lots of relaxation and "lazy" time! Ray spent the summer at home of course doing Hep C treatment.

So officially Ray is BACK TO WORK! He began back on August 20th, we started back the same day! Thanks to my Grandparents, Aunt Patti and Aunt Carol who helped us that week!

Rays last biopsy showed little to no change with his previous biopsy. Dr. Smith was pleased with those results since he had been on treatment. We would have hoped it would have been better change but he was very pleased with NO CHANGE. Finally Rays hemoglobin began to come back up...this has literally taken ALL SUMMER. After the results of the last biopsy and speaking with the panel of other doctors at Duke Dr. Smith weighed all the options. Continue with what we are doing, stop treatment, wait to see if Ray is accepted in the trial coming to Duke. Ray has stopped the ribavirin and never began the 3rd medicine of teleprevir. He is however staying on the interferon (shot once a week). He now takes that on Friday since he is back to work. We are hoping, praying and waiting to see if he gets accepted into the trial at Duke for a new hep C medication that is coming. It is in phase 3 of trials and is a Gilead trial if there is anyone who wants to look it up. Simply google "gilead trial hep C." I attached one article here. The drug sounds very promising and with a shorter time span of treatment.

http://www.reuters.com/article/2013/05/02/us-gilead-hepatitis- dUSBRE9410QM20130502

We are just now in a WAIT pattern. Waiting to hear from Duke to see if Ray is accepted in the trial. He is enjoying being back at work, TIRED but good. He beats me to bed now....and we all know once school is back in I'm a 9-9:30 kind of gal...Rays asleep some night by 8:30...right after the kids! His labs lately are STABLE. Hemoglobin is MUCH better and his kidney function last week was MUCH better than it has been in awhile also.

I was thinking back today about the first day of school last year and my birthday. I was reminded that that time last year Ray was in the hospital at Duke "getting a tune up" and I was here by myself, starting the school year, getting the kids ready and spending my birthday without him. I thought to myself how lucky I was that this year was so different. My husband took me on a date for my birthday to dinner and a movie, he walked Riley to kindergarten and was around to help make lunches, he picked up dinner for us on Friday night and helped clean the house Friday afternoon for a tired Mommy teacher, we went to the first ECU game together on Saturday, etc..he was here this first week....Dont' forget the SMALL stuff I thought to myself!

The past month or so with the unknowns has certainly been a roller coaster but I am reminded and confident the Lord has it all undercontrol. Ray and I really thought this last treatment was "the one", the one to rid his body of hep C for good...well it wasn't. I know that God hasn't brought him this far to forsake him now, God has a different plan and Ray and I just need to follow suit. "Never will I leave you, never will I forsake you" the Lord tells us. He will reveal his plan to Ray and I and the doctors.

The kids by the way are great. LOVING 4th grade and kindergarten so far! Really proud of Jackson this year because he qualified for STRIDE (what use to be called AG/TAG). Riley is doing gym and dance this year and Jackson will begin fall ball soon. Never a dull moment with kids right!

I APPRECIATE all of you who send emails and ask about Ray. So many "old AES parents" stop by on open house night or the first day and ask how my husband is. I have gotten emails from folks over the last few weeks because they haven't heard anything from me and wanted an update. Cards will come, emails, etc....I hope all our family and friends know HOW MUCH they all mean to us!

I attached 3 pics...the kids on the first day, Ray with Riley on her first day of kindergarten and Ray and I at the first ECU game.