On Saturday June 27th The Brooks headed to Salisbury NC to visit and celebrate Jonah King, Rays donor. We were able to collect 19 helmets to donate to the helmet drive that Jackie and Ken hold each year to donate to others in Jonah's memory. It was a great feeling to be able to take that many helmets and see Jackson and Riley unloading the bag with Ms. Jackie and looking at all the helmets and talking about them!
As we arrived and were getting out of the car, Ken (Jonah's dad) walked over to the car to greet us. This was my first time meeting Ken face to face, we had talked on the phone before. As we introduced we hugged one another- a long hug- a hug that I am sure we both felt our eyes fill up with tears and just hugged each other as if to say "it's ok". This is a moment and feeling you can never prepare yourself for on either end I am sure- the end of the family being the ones who received the gift or the end of the family who has lost their loved one. It is a strange feeling but at the same time a feeling of peace to be able to physically hug someone from that family and say "thank you".
I was able to meet so many friends and family members that Ray and the kids met last year (but I did not since I was unable to go). It was truly special! It was great to see Mrs. Jackie again (Jonah's mom, Malachi (Jonah's brother) and to meet in person Noah, Jonah's other brother.
Another highlight of the day for me was meeting Jonah's grandparents- Mr. Gene and Mrs. Barb King. I also briefly was able to meet Mrs. Jackie's father and stepmother but unfortunately we missed Jackie's mom- Mrs. Bernice....although I feel like I know her from Facebook!
It was a pleasure to sit down and chat with Mr. Gene and Mrs. Barb. One of the things they told me was that not long after Jonah's funeral, their daughter began to piece together what "they thought" was finding some of the organ recipients. They had found Ray and had found my blog, this blog during that time! Mr. Gene and Mrs. Barb said they would find themselves checking the blog daily, longing to get an update on how Ray was doing. My eyes filled with tears. It was really touching to me to know that through their pain, they were also pulling for this stranger that they "thought" could have received their precious grandson's liver. And maybe in some small, strange way that provided them with a sense of hope during those first weeks of loss.
It was also really touching just to hear Mr. Gene talk about his grandson. How strong and stubborn he was; I was able to tell him THANK GOODNESS for that characteristic because I am convinced that, that strong, stubborn characteristic is what helped Jonah's liver last as long as it did so that Rays surgery could happen and be complete. Just hearing this sweet man talk of his grandson reminded me too of my sweet Granddaddy Joe. As Mr. Gene would talk of Jonah or relive a story you could see his eyes fill with tears and it just made me think of how my own sweet Granddaddy would feel if he too like Mr. Gene would have outlived one of his grandkids. As happy and thankful as this family is to meet and form relationships with these recipient families it is also obvious that they still miss their Jonah and the hurt is still there. I am amazed with how they all pick up, move on and continue to live life not in spite of it all but FOR Jonah.
This was also a special day because the Kings were getting to meet another transplant recipient- John from Maine that received Jonah's lungs.They have now met 3 recipients and also heard from a few others. I remembered back to a little over a year ago and how I felt meeting Mrs. Jackie for the first time. Being able to hug her and talk to her in person. As I watched John and his wife walk up and Mrs. Jackie and Ken go out to greet them and embrace each other for the first time...it was special to be able to see that happen from the outside looking in. John and Ray enjoyed talking- sharing transplant stories, their "battle scars", what medication they both took, etc...I am sure it is an overwhelming feeling for these two strangers to have been able to meet knowing that they both have a piece of a special angel that helped them to continue to live.
I am reminded on days like Saturday how blessed my family is. It fills you with a sense of happiness and also a sense of remembering that "this could have turned out so differently" had Jonah not been a donor. That God doesn't give us more than we can handle- even when it doesn't feel like it- he doesn't- that rings true with this special family- The Kings.
Thank you to all those who helped by making a donation to the helmet drive or by giving a cash donation for the Brooks' to buy helmets. I am certain that it will make a difference and keep kids safe!
*Recently I asked a girlfriend of mine to send me a document of the night she was with Ray at the FD when he got "the call" for the transplant. I want to use it in my book I am writing. I ask our friends and family- if there is something that sticks out in your minds from either the first or second transplant, please jot it down and type it in a word document and send it to me. I would love to get others perspectives and memories to add as a supplement to the book.
Ray and Janet
Monday, June 29, 2015
Sunday, August 3, 2014
Hi everyone (Please share with WOH, Church staff and Red Oak FD emails)
Well it's been quite awhile since my last update and this update has come a few weeks later than I wanted BUT better late than never. Ray ended his clinical trial with Duke the middle of July. This means he took 12 weeks of the medication that Gilead was testing and then was monitored by Duke 12 weeks after. His last visit they did their last blood work and called about a week ago.
"NO SIGNS OF HEPATITIS C", the virus was undetectable after week 4 of the medication and has not been detected since. They know claim him cured from hepatitis C. This is such an unbelievable blessing. Almost too crazy to process. When we told the kids and explained it to them, of course they were excited, cheered, etc...but I told them "do you know how lucky you are that at the age of 7 and 10 YOU have witnessed a miracle...you have seen God perform a miracle in your daddy by healing him".
The maker of this drug was Gilead and it is named Sovaldi (for some of you who have asked and wanted to read about it!) For the first 3-4 weeks Ray took it in conjunction with Ribavirun but then had to stop that drug due to dropping his blood cells too low, however they are feeling like this 2nd drug may not even be needed, just the sovaldi. The great thing about this drug is it is a SHORT window of treatment, high success rates and very few side effects. The downfall is STILL they are arguing over price for patients and if insurance will cover, etc....it is my hope and prayer that they WILL...in the long run you would have healthier people to cover and potentially much lower cost than a transplant.
So how do we say thank you to all of you all for all the prayers, love, support, encouragement all along the way...we don't even know how to say thank you but a BIG THANK YOU! Without you all we couldn't have made it through this crazy ride. We are hopeful and confident that this CHAPTER is closed.....I am happy to lock it away and throw that key away! However we are always reminded that through ALL of this we have learned and grown in our faith, marriage, knowledge of hepatitis C and organ donation...I have grown in more ways than I can even acknowledge.
So thank you all!
I have begun (for many of you, you will smile because you have said this to me!) to write a book. I am about 10,000 words into it now and up to the first transplant! There's a lot to cover! It is my hope to connect to others who have had this disease, doubting their faith, grown in their faith, a young couple who struggles with a health issue, organ donation, etc...there is so much I want to hit on in this book. I just ask that you pray for me during this next journey...I guess I should say when that is done then I can close that chapter. I just feel like I really want to get this story out there. If you think of any "Ray liver memories!!"...send it to me if I need to remember to put it in the book! :)
THANKS all and most importantly PRAISE JESUS....your grace finds us! God is good ALL THE TIME, his word is true...never will I leave you never will I forsake you.
Ray and Janet
Friday, January 31, 2014
Just wanted to give a "Ray update" on the trial medication. Today was the LAST day of the 12 WEEK DRUG TRIAL! It is hard to believe that 12 weeks have come and gone and so has this TERRIBLE virus! He will continue to meet with the duke study drug team over the course of the next several weeks. He will be seen by them until July 18th, twice in February, once in March, once in April and then the last visit in July. Dr. Smith I am sure will begin to pick back up with care and monitoring during long spans of time between study trial visits...I think he misses Ray and I truthfully!! :) Ray ask the question today out of those who have taken the drug before him how many have "relapsed" and the Hep C has returned...out of about 40-50 people there are maybe 2-3. Those who are POST transplant like Ray, most have just finished their 12 week course like Ray. Duke is very very hopeful that the virus has cleared and will stay that way. Ray and I are as well!
Over the past week Ray also received notice from Carolina Donor services and signed a release from them to have/accept contact from the donor family. Ray did and so did the parents of the young man who donated to Ray. We had received a letter from the young mans father and then right after Christmas received one from the young mans paternal grandmother. Just this week Ray received an email from the donors father. They may now have open communication through email- letters back and forth, calls, etc...Ray was very touched and thrilled- it truly seems so is this young mans father to be talking with Ray. He told Ray that he and his mother (the grandmother) had already found Ray (they felt) before receiving the confirmation from Carolina Donor services...interesting because we had done the same...locating the young man that had passed around the time of Rays transplant and finding his story on the news...they were doing the same thing....interesting how God was leading us right to each other, we both just knew we had to abide by the "rules"
So we just ask that you continue to pray for complete and TOTAL healing in Rays body. Continue to pray that Ray and I stay faithful that God has provided this miracle for ALL to witness and that no "seeds" of doubt be planted or paid attention to by satan of the "what if's" and "what if the virus returns"....NO WAY...God isn't done with Ray and I believe he has healed him and will use Ray for great things. So as Ray gets blood work in the next month we will share with you results and that the virus STAYS AWAY!
Thanks all! Ray, Janet and kids (and it actually snowed here this week...REALLY snowed so we ALL had so much FUN playing and sledding...that is the picture of us all above!)
Sunday, December 15, 2013
Sorry it has been a few weeks since an update...can you tell the Christmas shopping season is upon us and between, shopping, hiding gifts, wrapping gifts, decorating and preparing for the last week of school I am BUSY and EXHAUSTED!!!
Well here is the Christmas gift that CAN'T FIT BENEATH our TREE this YEAR!!!!!
Right before Thanksgiving Ray got his viral count from week 2 labs- his HCV (hep C viral count) was down to 2,000...remember the original HCV was 28 million. We didn't send an email that week because Ray wanted to tell his family in person his news for Thanksgiving. He didn't have to go to Duke the week of Thanksgiving and returned the first Friday in Dec. that was week 4 in the trial.
So somewhere between week 3 and week 4 his HCV load became UNDETECTABLE! There is NO HEPATITIS detectable in his blood stream!
We found out last week on Wed. Unbelievable right!!! A TRUE MIRACLE. I knew that once Ray was admitted into this trial that it would be Gods will to cure him and to show ALL those who pray for Ray a TRUE MIRACLE through the healing of his body.
Ray had to return to Duke last Wed and will return again tomorrow. His hemoglobin is LOW and they did stop one of the two drugs he was taking the ribavirin for now. They are waiting and hoping his hemoglobin- red blood cells will go up on their own soon. The ribavirin decreases his red blood cells. If they drop below 5 they will do a blood transfusion, he is in the 6's now.
He continues to take the "trial drug" though by itself. It basically does all the "heavy lifting"...the ribavirun just assist it. He is very anemic and it makes him winded, tired and if too low is dangerous. Duke took him out of work last Wed-Friday to rest, lay around and relax...didn't want him to over exert himself. He will go back tomorrow for another blood draw to check his hemoglobin. He then returns on Friday for his scheduled visit. When his numbers improve they will begin him back on the ribavirin. He is having little side effects from the medicine- obviously extreme tiredness, headaches- pretty much daily, some trouble sleeping and for some reason can now "hear his blood pumping" in his ears/head...which drives him a little nutty! BUT overall they are so minimal compared to all the other side effects he had in the past on other treatments that he is dealing!
He will continue to take the full 12 weeks of the drug even though the virus is undetectable now.
THANK YOU THANK YOU for all the continued prayers. Please share this email about Rays miracle with those that pray for Ray as well.
MERRY, MERRY CHRISTMAS, Thank you God for such a wonderful gift. The kids are SUPER excited as you can imagine!
- Ray and Janet Brooks
Monday, November 25, 2013
Just a quick update on Rays last numbers. His viral count when he began treatment was 28 million. After the first blood draw (7 days into treatment) his viral count DROPPED to 50,500. He had labs drawn again this past Friday (Nov. 22) and it will take about a week again to get those back again- there is a 7-10 day delay from when they draw until the results. He is on week three of treatment now. Waiting to get his labs back from Friday with his liver numbers, kidney function, hemoglobin, etc...hopefully tomorrow.
In a nutshell this is a GOOD RESULT! EXCELLENT the study coordinator told Ray. He has had one of the best reactions so far. Remember they said that a cure (0 viral count) within the first 4 weeks was a good sign and would increase your likelihood of the virus not returning.
The prayers are working prayer partners, PLEASE keep it up! Pray, pray, pray that God, this treatment and Rays body continue to battle this terrible virus and finally free his body of it, complete and total healing.
Thanks as always for the words of encouragement, support and just prayer over Ray and this family. Even Riley told someone the other day "my Daddy is going to be free of Hepatitis"...truly I had never even heard her say hepatitis before...she hears, sees and takes in everything. I pray that her and Jackson WITNESS a TRUE miracle!
Happy Thanksgiving to all, we SURE are thankful this year!
Ray and Janet
Monday, November 18, 2013
Hey all....quick update on Ray today. Duke emailed his FIRST labs today. This was from last Friday...day 8 of treatment. His AST number (the number that first kept him out of the trial-liver number was 366 originally and now is 47. ALT (Another liver number) was near 303 and now is 73. His bilirubin had gotten as high as 3.1 but now is 1.8. Alk phos (another liver number) 412 but now is 282. Platelets were 88 and now are 118 (you want this number to go up not down like the others!). Kidney function 1.5. Been running between 1.7-1.8...kidneys are stable at this time. Red blood cells were not declined as of now.
Numbers are definitely headed in the right direction, a GREAT first report. Hopefully this weeks numbers will be more of the same. Hopefully by Thursday or Friday we will hear the first hep C viral count and PRAY that is decreasing as well. Ray and I were SO PLEASED to hear this first report. The first of much more good news to come I feel like. As I told the girls I worked with today on the playground in was almost SURREAL the words that were coming out of my mouth! He will head to Duke again this Friday for more labs.
Will keep you updated!
Monday, November 11, 2013
Here is the update from Fridays visit 11-8-2013 (Joan can you please share with WHO ladies, Carol can you please print a copy to share with Grandma & Granddaddy!)
Ray began the drug!!!!!!!!!!! Whoo hoo!
He takes the new drug just once a day, the other drug(ribavirin) twice a day. He was very excited on Friday, all smiles! They did the study randomization to see if he would be 12 weeks or 24 weeks- he received 12. I had prayed about it- not one way or the other but that the Lord would just do his will and we would accept whatever that was. I wasn't disappointed or let down- I just knew the Lord had answered saying "this is my will, this is my plan". Stacey- the study coordinator also said no worries, 12 weeks was plenty of time. She said now places are looking into studying the drug for 8 weeks of treatment because that is enough time to clear the virus. WOW! Stacey also told us that she had been on the phone with Gilead ALL week last week. One day Ray was kicked out of the trial (due to a coding problem..on Gildead's end....so then he was back in the trial...then another day he was back out...coding problem on Dukes end...one day Stacey spent over 2 hours on the phone with Gilead about Ray being in this trial. Finally on Thursday of last week Stacey said she told them "he's coming tomorrow and his IS going to start taking this drug"....PRAISE the Lord for angels on earth who FIGHT for us...even when we don't even know it...we told Stacey good thing she didn't tell us any of that until AFTER we came on Friday.
Ray will travel to Duke for the next several Fridays in a row- 3 to be exact and then it will begin to space out more. Most visits will just require blood work, talking about medication- if he's had an side affects and then dispensing more medication. Some are more in depth with more EKG's, examine, but not many of them.
Next week will be the first blood draw since being on the medication for 1 week. It will take about a week to get the HCV (how much hepatitis is in his blood stream) back after the first week. After that the next few weeks will begin to let us know how his other liver numbers are beginning to come down and get back in check. Stacey did tell us that if Rays body can clear the virus within the first 4 weeks of treatment that was a very good sign and a good indicator that the virus would not reoccur. If he was not able to clear the virus until week 7 or 8 of treatment then there was more of a chance of the virus returning after treatment. Beginning the treatment his HCV (viral count) is 28 MILLION copies of the virus in his blood stream. Gilead knows this drug WILL CLEAR the VIRUS...it is keeping it away- what they are looking for.
We are truly just thrilled that Ray is in the study and has an opportunity he has never had before- ACTUALLY clearing this virus. Our next prayer is that the drug begins working and clearing the virus over the next couple of weeks. I also pray that he is able to tolerate treatment, stay strong, his kidneys remain strong and tolerant and his hemoglobin does not begin to go down anymore. I know a lot of prayers right- but it is ALL a balancing act!!!
We will keep you all posted as we hear more from upcoming labs, etc...it may be a couple of weeks though. Even though he will have labs drawn next Friday it may take up to a week to get results back.
Many have asked how many points did the number drop that was keeping him out of the trial before- it was at 366, then dropped to 360 and then dropped to 281. THAT is the POWER of GOD and healing through prayers!
Thank you all for being such FAITHFUL prayer warriors for our family. We hope that over the next several months that you all can witness ANOTHER miracle in Ray with complete healing of his body!
xoxoxox-Janet and Ray