Hello everyone!
Josh here. This week Crystal, Carter, Ethan and myself are in Minneapolis, MN for Carter's 3 year post bone marrow transplant appointments! I thought it may be appropriate to give you guys a little glimpse into Carter's story. A lot of you guys already know the story, however, I know there are some new folks who may be taking a look!
Carter was born On October 12th 2006. In a pre-natal ultrasound the doctors determined that he was missing his right kidney so we knew there were going to be a few tests done after birth. He was born with a
hypoplastic right thumb, a small hole in his heart and very few other issues. Yet to us, he was PERFECT! When we noticed that he hadn't gained any weight from his 6 month to 1 year check-ups we realized that there may be more going on.
After countless tests, and a whole lot of persistence from my wife we were sent to Duke University Children's Hospital for extensive testing. When it seemed like there would NEVER be an answer, it came. A doctor at Duke walked in our room and said "There is one more thing...It was an extra credit question on an exam in med school. A lot of the symptoms seem to match up, but it is VERY rare and most likely will not be it
." **** It was. She called us in to the office in late November to tell us that our son had
Fanconi Anemia. "Do not go home and google it" she said. "The statistics are not very positive."
SO NATURALLY, the first thing we did was went home and Googled it...it wasn't very pretty.
After more research over the next few months as well as discussing things with everyone who would listen, a strange thing happened. My father-in-law's company had recently been bought by another company. His new boss was located in Alabama. During a phone call one morning Dennis mentioned the diagnosis to his boss who replied, "You're kidding me. That's extremely rare! You won't believe this but my nephew has Fanconi Anemia and the discovery channel just did a special on him and his family!"
**** EVERYTHING HAPPENS FOR A REASON! We talked with the family in Alabama and decided that we NEEDED to go to the University of Minnesota and speak with Dr John Wagner, one of the foremost experts in Fanconi.
That we did. And BOY was it cold! Our first trip to Minneapolis, MN was in January of 2008. We left 70 degree weather in Raleigh, NC only to land at the Minneapolis/ St Paul airport to hear the pilot say, "Welcome to Minneapolis. The weather is a brisk 4 degrees with northwest winds at 20 mph." JUST TAKE ME HOME!
We met with Dr Wagner and really liked him. We came up with a plan for action which involved an extremely risky bone marrow transplant. That was the first and the only time throughout the ENTIRE process that Dr Wagner told us that Carter may not make it home from Minneapolis. It was devastating, but we kinda already knew this.
The year went by with Carter's blood counts steadily dropping. Around December of 2009 his counts were at a critical low. We knew it was time for the transplant and this was confirmed in a late night phone call with Dr Wagner. We were packing are bags for one of the hardest and longest trips we would ever have to make.
We arrived at our new home in late January 2010 and got settled in for what was inevitably going to be the most difficult 6 months of our lives. In early February the chemo and radiation started. Carter became sicker and sicker. He got his "new blood" a few days later and it was all a waiting game to see if it took. After a few days we started seeing good signs. His new blood was working! The doctors were amazed at how quickly and how well it was going!
****
We were released from the hospital 14 days after the transplant had taken place. I think that's got to be some sort of record! This new found freedom was a huge blessing even though Carter still had to stay in the apartment with a mask on at all times.
In May of 2010 we were given the ALL CLEAR to fly back home to Raleigh. We were scared to death and hesitant to leave our security blanket of the comprehensive care unit at the U of M but we were ready for the support of home. Plus, a lot of families didn't have a world renown BMT hospital like Duke in their backyard to go home to, so we were blessed!
****
About 2 weeks after coming home Carter got a terrible line infection which for all intents and purposed nearly killed him. We were admitted to Duke for a month.
Things got progressively better and better over the next few months and it looked like we were out of the initial threats of this horrible disease! In fact, it was going so well that Dr Wagner said during his 1 year post BMT appointment that "if I(he) hadn't done the transplant himself, he wouldn't believe that he had gone through anything!"
****
During the stay at Duke we learned that we were expecting our 2nd little boy! This was pretty amazing since Crystal's doctor had all but told her that she'd never have anymore kids
****...She underwent a process called Preimplantation Genetic Diagnosis prior to Carter's transplant to try and conceive a perfectly matched sibling that would be the BEST donor for Carter. It was a very invasive process that would likely ruin all hope of having more children...thank GOD the doctor was WRONG! Our second son, Ethan, was born in February of 2011 healthy and free of Fanconi Anemia.
As I sit here and look back at all that we as a family have gone through in 6 short years, I am amazed at nearly every single aspect. God has brought us through so much to get us where we are today. Even though the struggles for Carter aren't over yet and stage two of this dreaded disease is eminent we are truly blessed that when given the opportunity to either HATE God and turn from Him or lean on HIM completely and know that His hand was guiding everything, we chose the latter.
Carter's strength and spirit has changed the lives of nearly ever person he has come in contact with. This journey has given me, my music and my LIFE a purpose. Whatever we are playing and wherever we are playing it I know that I'm continuing to tell a story that may change even more lives. Whether by bringing awareness to Fanconi Anemia or just conveying the FAITH that brought us to where we are today, I have a purpose for being in front of a crowd, a reason to shout and a little HERO at home to thank for ALL OF THIS.
This journey has made me realize that we all have a gift and a story. When we use these two things together great things can happen.
**** = things that happened that MAN cannot do. Only GOD
"I've got something to say. I've got someone to thank. I've got someone carrying me all the way."
- Josh Pepper Band - "Something To Say"
I am not sure exactly how it came to be, but as much as I love the thrill of experiencing different places/towns/cities/countries, I am still a small town girl at heart. Sometimes I wonder if a "love for the city" or a "love for the country" is written in our DNA before we were born or if it blossoms out of our experiences as we grow/learn life along the way. For this girl, I think it was a little of both. 
Growing up as the oldest of three in a tight knit second generation Brazilian and third generation German immigrant family, I spent a lot of time with my immediate family and also with families that my parents knew growing up (who also spoke German and Portuguese). My family lived an hour and a half north of NYC and would travel every Sunday (for many of my childhood years) to the church my parents grew up in: http://www.immanuelchurchny.org/our-history/ It was a great place. I have many fond memories of strong community with the people from the that church; memories of many events at their homes, at Nassau Beach and also one of my favorites - our annual camping in the Catskill mountains. 
Another contributing factor to my love for small town / country type living comes from growing up in a townhouse community in Beacon, NY. This townhouse community was not like it is in town-home communities today. Everyone knew each other. All the kids grew up playing together throughout the complex - outside every possible day we could! We had birthday parties there, went to the same community pool, rode bikes around the complex and also to school. We would go sledding on the two small hills in the winter and rush to the ice cream truck or eat ice pops on someones front steps after catching lightning bugs in the summer. Certain smells in the air can bring me instantly to that time / place in my childhood. My parents worked hard to be in that townhouse. I am thankful for that and for them. 
