Wednesday EVALUATION at Duke for Clinical Trial for new Hep C med...October 16, 2013

Hello all

Friday Ray received a call that he had made it through PRE-SCREENING for the drug trial for the new Hep C medicine. He will go for additional screening on Wednesday of this week at DUKE. If all that goes well and no red flags are raised they will send the information off to Gilead and then they will formally approve Ray for the trial and let him know what his start date will be for the medication. This is HUGE! Not at all what we were expecting. In fact several weeks ago I had spoken specifically with Rays nurse coordinator and they felt like Ray probably wouldn't get in the trial and they were determining what the next plan would be to get this new drug for Ray. We had really begun preparing our hearts and minds for that.

 

The call came and it seems like good news. We will be MOST EXCITED when we get the FINAL approval and the medication is in Rays hand for him to take. Just PLEASE pray over these test on Wednesday. That his EKG comes back fine, his labs are ok, kidney function is in an acceptable range and that his liver numbers have "calmed" down slightly. Pray there are no other infections and nothing keeps him from getting in this study.

 

We also received WONDERFUL news from our dear friend Mrs. Pat. Mrs. Pat is in this same clinical trial at Carolina and has been taking this same drug for a little over 2 weeks now. Her first Hep C test revealed her hep C levels were down to 73.....last Friday her family received a call that the virus is now UNDETECTABLE in her body. PRAISE BE TO GOD................WOW AND WOW!! We are just so super thrilled for Mrs. Pat and her family and the possibility that there is a drug out there that will CURE THIS TERRIBLE, TERRIBLE VIRUS.

 

So we will continue to update you all after the evaluation and when we hear a FOR SURE from Duke.

 

We sang this song in church on Sunday by a group called Deluge...the song is called Healing is here. I wanted to include some of the lyrics....

 

Healing is here healing is here   Healing is here and I receive it  

Healing is here healing is here             Healing is here and I believe it

I reach my hands to the heavens        

 I lift my eyes where my help comes from I look to You my rock my healer  I trust in You

Sickness can't stay any longer     Your perfect love is casting out fear   

You are the God of all power     And it is Your will that my life is healed

(you can listen to this song on You-tube, really beautiful)

 

What a GREAT song to sing and share with the Johnson family on Sunday. SICKNESS can't stay any longer, WE lift our eyes up to the heavens and TRUST in you. Our sermon on Sunday was also just perfect. God was sure TAPPING me on the shoulder...."hello my child...listen up and listen good...this is for you.   A few things that really struck me I wanted to share with you all . The sermon was all about TRUST and Gods call (you can watch it on connect2covenant,com if interested). God is looking for people who will obey him EACH step of the journey. Gods plans are not like OUR plans. We don't know the FINAL step...just THIS STEP and he reveals to us ONE step at the time. God is looking for servants who will TRUST that he will provide EACH day, each STEP of the journey. He tells us TRUST me RIGHT NOW and I will PROVIDE RIGHT NOW. God's blessings don't come BEFORE we obey but after.
FINALLY in this long email....I had an endoscopy today and abdominal ultrasound. My endoscopy was fine and didn't show anything with my stomach, etc....that was good news (although not really explaining my "tummy" issues) but the ultrasound did show a "spot" they called it on my liver. Ray was like "really you had to say LIVER"....turns out this doctor, Dr. Cole also knows Dr. Smith- Rays hep C dr....small world....

They will do a colonoscopy on Friday and a CT scan to check that out more closely. The doctor told Ray he was NOT alarmed and felt like it was either nothing, a shadow, possibly a cyst, etc....but since they did see something it is there job to check it out more closely. Next Thursday I will also have a hideascan (however that is spelled) to check my gallbladder and it's function.  While I don't remember ANYTHING from the endoscopy (thank the lord) I was VERY weepy afterwards from the news- (it was shocking and scary) and I guess the anesthesia so I basically cried most of the afternoon! Please just pray for this "spot" to be nothing, for a sense of peace for me in the coming days and test and just to remind myself NOT to worry that it is in God's hands, God didn't make me to have a spirit of fear.

 

So friends, family, "jesus girls", covenant prayer team I just ask that you COVER the Brooks' in prayer this week. Cover Ray on Wed with is test and that he is admitted into the trial, cover me on Thursday as I "prepare" for Friday and Friday during my two test that all is well. Thank you

 

Below is a picture of Ray and his transplant buddy Mrs. Pat....they are the SUPERHERO team of Hep C fighting....they'll make it in some medical record books I know and go down in HISTORY!!!!!!!!!!!!!! We love you Mrs. Pat, Mr. Sam and Amy!

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.
----------------------------------------------------------------------------------------------------------
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.

Red Cross makes emergency call for blood donations - WNCT...Rays interview about blood donation

Red Cross makes emergency call for blood donations - WNCT

GREENVILLE, N.C. - The blood supply is shrinking in hospitals across the country. That's prompting The American Red Cross to issue an emergency call for donors.
Nationwide, donations are down about 10 percent. The Red Cross has 50,000 fewer donations than expected.
Just one pint of blood can save three lives.
"If we don't come out and we don't increase the blood supply these patients in the hospitals are not going to get what they need. And it's so important to keep in mind, they don't get a break from being sick," said Kristin Brown.
Brown is not just a Red Cross employee, she's a survivor. And her job is personal.
In 2008 she was diagnosed with Aplastic Anemia. The rare blood disease affects 2 out of a million people.
"I needed about 100 units of blood and platelets between May and October of 2008 just to keep me alive," Brown said.
It turns out, those donations actually saved two lives.
"Ava Marie. She is my miracle. The doctors did not think I'd be able to have children after my bone marrow transplant in October of '08 but she is going to be 3 in September and she wouldn't be here as well," said Brown.
It's something Red Oak Volunteer Firefighter, Ray Brooks knows all too well.
"Without the blood I wouldn't have made it through the surgery, I wouldn't be here now," said Brooks.
He's been through not one, but two liver transplants.
" I was born three months premature and I needed a blood transfusion. That set the stage. Back in the early 70's they didn't know about some diseases like Hepatitis. I contracted Hepatitis C from that. Found out about it, as I grew up into an adult hepatitis C destroyed my liver," said Brooks.
They're the faces that have relied on the Red Cross, and now the Red Cross is relying on you.
"Locally we need about 500 to 600 units of blood each day to supply our local hospitals," said Kaitlyn Brooks with The American Red Cross.
Summer vacations, the 4^th of July holiday and a break from school is causing a big shortfall in blood donations. There's also an urgent need for platelets which help your blood clot.
"I know it's a little inconvenience maybe out of your day but it's something we could really use. People like me, you may have a family member who gets in a car wreck, loses a lot of blood, needs a blood transfusion and if they don't have it to give...they don't have it to receive either. Please give the gift of life," said Brooks.
If you want to find a blood drive near you visit this website: http://www.redcross.org/find-your-local-chapter

Update after 3 months of treatment Interferon/Ribavirn/Teleprevir- Duke visit July 11, 2013

We went to Duke on Thursday for a monthly check in while on treatment. Ray has been on interferon and ribavirin for 3 months now. The next step would be to introduce the 3rd medication which is the Teleprevir, however his hemoglobin (red blood cell count) has been very low. Duke's biggest concern with starting the next phase would be bottoming out Rays hemoglobin- that would be 8 or below. If that happens he would need a transfusion and also runs a high risk of heart attack and stroke. If his hemoglobin bottoms out he would have to stop the treatment all together and would not be able to resume.

 

There are several options right now. Dr. Smith has written clinical trial coordinators to see if Ray would be a potential for a clinical trial that is coming to Duke (another new medication). Rays Dr. is unsure if he will even be a candidate because he is a retransplantee and his kidney function is low.

 

Regardless of what happens within the next several weeks they do want to biopsy Rays liver to see how it is responding to treatment. Is there less scarring, the same, does it look "less angry" then they last biopsy.

 

Another avenue would to be to stop treatment all together and wait for the next thing to come out. Lets Rays blood cells and body recuperate and hope he can wait for the next drug. How long that could be? unknown.

 

Third- get his blood cells up as high as we can with the help of Procrit....they are slowly creeping up and try introducing the third medication knowing that if his kidneys or red blood cells treatment would have to stop and he runs risks associated with that. Since the second transplant Rays kidney numbers run between 1.7-2.0....this means his kidneys function between 45-60% efficiency. His red blood cells (hemoglobin) once on treatment have been as high as 12.3 but as low as 8.1. Two of his three liver numbers are down almost right outside normal range- which certainly tells us the treatment is doing something hep C and liver wise. The biopsy will tell more. His hemoglobin on Monday the 8th was 9.4, it's got to come up more to even consider the 3rd treatment.

 

Basically that is where we are right now....not very clear. I prayed in church today that Ray and I would continue to be faithful and trusting in Gods plan. Trusting that it isn't up to US or DUKE but that God will provide us a clear answer as to what to do next- he is in control- he will decide- he will lead us and the Duke doctors down the path HE has chosen. This is where it is hard, when medicine, science and FAITH have trouble overlapping. Ray is pretty bummed. He was ready to go ahead and start the 3rd medication. Ray is a risk taker and I believe if given the opportunity he is going to want to try the 3rd medicine and see what happens, praying for a positive outcome. I know that Ray feels like this treatment is his "silver bullet" to rid his body of hep C and stop all the insanity of illness and being sick. I also know that he wants to return to work and is very concerned about that. Each day that passes that he doesn't begin the next treatment is a day marked off his "calendar of work" and saving his job and position. I believe he is having some times of depression, anger and hurt recently- he can use ANY and all encouragement, calls and PRAYERS on a daily basis- not only for his physical health but mental and spiritual.

 

So now what? We just wait and PRAY. Pray very specifically for God to provide us a very clear answer as to what he wants us to do next and for us to TRUST. I pray that Ray will continue to strengthen Ray and regenerate his red blood cells. I pray that God heals Rays kidneys and that they are able to tolerate treatment. I pray that if it is his will for Ray to begin this 3rd treatment that he will take care of the rest- he will keep Ray safe, he will protect his kidneys, he will keep his red blood cells up. HE is the great physician and I DO know that HE can do anything. I WILL pray specifically for those things. I know that God hears our thoughts, fears and cries of "we need something to work, we need Ray to be healed of this horrible virus". So I ask that YOU PRAY specifically for us to....if you know others who pray forward this on to them and ask them to pray that God will show us his will and that it will be done in Ray. Are we scared, yes...is this uncertainty tough to bear, yes....but I just have to keep trusting and believing that it is all for something and worth something and that God isn't done with Ray yet.

 

Will update you again when we learn more- hopefully sometime this week.

Ray and Janet Brooks

 

*On a happy note- Ray celebrated  his 41st birthday this week and DIDN'T feel terrible this week from treatment. Saturday night we were able to go out and celebrate with dinner at Moes, went to bowl and Riley lost her first tooth! Pretty fun and exciting night

Update after 5 weeks of treatment June 6, 2013

Hey everyone

Just wanted you to know that so far so good Ray is tolerating treatment. We went to Duke last week and feel good that after 5 weeks of treatment they will introduce the 3rd medication into the mix. They have ordered it and we will just wait for it to arrive and then Ray will begin it. This medication he will take for 12 weeks and will be the hardest leg of the treatment. Ray will be Dukes 4th or 5th post transplant patient to be treated with this new triple therapy. One man they are treated right now once he began the 3rd drug Teleprevir, after 10 days his viral load was UNDETECTABLE!! Amazing right! The teleprevir is taken 3 times a day and MUST be taken with 20g of fat each time to be processed through the body...whoo right! It is a difficult drug.

As he is getting ready to start this next treatment and his one year anniversary post transplant is coming up I am asking for you all to SURPRISE him with happy anniversary cards or encouragement cards in the mail. Send this to others you may know who may send cards too- bible studies, church friends, family, etc....Just encouraging words, a bible verse, anything to encourage, lift his spirits and let him know there are TONS praying for him and rooting for him.

Our address is 1101 Hayley Court Greenville NC 27834

We are calling June 13th his anniversary date since surgery BEGAN on that date but didn't FINISH until wee hours of the morning June 14th (heaven help remembering all that time June 12th-14th is a BLUR in my memory from last year) Thank you all for continuing to think of him and just PRAY for him on a daily basis. He takes his interferon shot each week on Tuesday so Tuesday night, Wednesday and Thursday are rough days. By Friday-Monday he is feeling a bit better, able to get out, so some things, but also nap. He is very close to being anemic.

Thanks guys!

-Janet

CHECK out www.donatelifenc.org today under BLOG

Well who knew TODAY May the 4th is International Firefighters Day- my sweet, new friend from Donate Life NC Katie Paulson did and she ask me to write a guest blog post for donate life NC today about Ray.
Check out the website and read the post! Thanks Kim for being my "proofreader- even though you say all my stuff makes your cry!" and thanks Katie for asking me, allowing me and helping with the guest blog. A really cool opportunity!
So THANK a fireman today!

Ray started his Hep C treatment this week- Tuesday as a matter of fact. He took his injection Tuesday evening and his main complaint was fatigue and muscle aches. NO fever this week or flu like symptoms- PRAISE the LORD! Maybe he is off to a good start and treatment can continue like this! By Friday he was finally feeling back to himself and was able to go with Riley on her strawberry farm field trip! We even had a date night last night after Jackson's ball game which turned into a really late night dinner for these two parents who are usually in bed by 10pm- but we had a nice, quiet late dinner and (drink for me!) at Rucker Johns. Tuesday will be Rays "injection evening" each week. At the end of May we will travel back to Duke to talk more about the next course of the treatment- the new drug.
Don't forget to check out the website!