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JOHNATHAN ECKSTADT 
Johnathan Eckstadt
Johnathan has Fanconi Anemia. We found out that Johnathan had this horrible disease when he was only three and a half years old. Since then, he has had many Doctor's appointments and many blood tests and bone marrow aspirations. Johnathan also was on Anadrol (steroid) from age ten to age thirteen to help stimulate his red blood cells. When Johnathan turned ten years of age his body stopped making red blood cells. Then when he turned 13 he had to have liver surgery. He ended up having to get two benign tumors removed from his liver. This was a side affect from the Anadrol(Steroid). Johnathan had to stop taking the Anadrol which resulted in monthly red blood cell transfusions. Then it became inevitable that Johnathan had to have a bone marrow transplant. He had his bone marrow transplant 7-7-04 at Fairview University in Minnesota. He had an 8/8 match by a non-relative donor. Johnathan has had allot of rough patches since his transplant. He has had to deal with C-Diff, GVHD of the gut, acid reflux, internal shingles,and painful warts on his feet. His GVHD is finally under control, but he still is dealing with stomach issues off and on. Johnathan was taking growth hormone shots daily to help him grow. Johnathan grew an inch and a half on his own and then an inch with the growth hormones. Johnathan's last bone age X-ray showed that the bones in his hands had fused together. That is an indication that he has stopped growing. The growth hormones would seem mute at this point. Johnathan is pretty bummed out about the fact that he will not be able to grow anymore. Johnathan still has to see several specialists at this point. In spite of what he has had to endure over the years, his strength and endurance has been through the roof. He loves shooting hoops with his friends and his dream is to be able to meet Michael Jordan some day. Michael Jordan is his hero. He had a picture of Michael Jordan on his wall all during his transplant. Bret Favre and Lance Armstrong also inspired Johnathan to get through his transplant. Johnathan was able to play on the tennis team when he was at high school and was given honorary king of the court for winning all his games. We are so proud of him! I think Tennis has become his favorite sport. John is 20 now and is in his second year in college this year (2011). I know that God's hand of mercy and grace played the biggest part in Johnathan's survival. Also Johnathan's strong faith and determination helped get him through it as well. We are were told by the doctor when Johnathan was first dianosed with Fanconi Anemia, that he may not live to see 10 years old and he would be lucky if he lived to be 12 years old. Johnathan beat the odds thus far. He still has to deal with cancer that could strike at any time. Cancer is the second phase of his disease. Johnathan tries not to think about his disease that much. He just tries to live his life to the fullest everyday. Johnathan is truly a walking miracle!
FAITH IS NOT THE BELIEF THAT GOD WILL DO WHAT YOU WANT. FAITH IS THE BELIEF THAT GOD WILL DO WHAT IS RIGHT.
Journal
Wednesday, May 26, 2010 10:03 AM CDT Hello Everybody!
John was asked to speak at a Relay for Life event for the American Cancer Society at his former High School: Below is a copy of his speech. We were so proud of him! He did a great job! He spoke before 500 hundred students last Friday May 21st. (He didn't even seem nervous!)
Good evening once again My name is John Eckstadt; I am 20 years old, a 2009 Oak Creek High School graduate and a 6 year post Non-Related Bone Marrow donor Transplant cancer survivor. I was born with a rare genetic disease called Fanconi Anemia, which is a Bone Marrow disease.
JOHN'S SPEECH:
I was born on April 8th, 1990 in Cudahy Wisconsin and was seemingly a healthy new born baby boy. My parents have told me that I was a fun and always laughing young child. My father enjoyed setting me on his lap to watch Packer games and tell me about how great the ‘new” quarterback was playing (Brett Favre).
In June 1993 when I was 3 years old, I started to bruise easy when doing just the fun things that kids do. So my parents took me to the doctor for a check up. He then sent us to Children’s hospital where we met with Dr J. Paul Scott a Hematologist.
He would later tell my mom and dad that he knew what I had when he met us. He had completed research on Fanconi Anemia while studying at the Medical College of Wisconsin .
They sent my blood to Rockefeller University Hospital and the Mayo Clinic. The results were returned and confirmed over the next few weeks. I was diagnosed with a very rare genetic terminal disease of the bone marrow called Fanconi Anemia.
In 1993 the only treatment was to perform a bone marrow transplant and the only successful transplants were with those using a matched sibling. I had no brothers or sisters at the time.
So the bone marrow registry that was just recently started was searched for a donor. They found someone who was a near match to the standards of 1993.
My parents chose to have another child and when my brother Cody was born in Aug 1994 it was determined that he was not a match for me.
So my doctor continued to monitor my blood cell counts between the years 1994 and 2003. During this 10 year period I was in the hospital or a clinic on a monthly basis.
These visits kept my entire family worried about me and in fear that my Bone Marrow would fail at anytime.
In 2003 an ultra-sound was performed since I had been put on Anadrol a steroid to help produce red and platelet cells. My doctors found a growth on my Liver in 2003 and in the summer of 2003 I had an operation that took a portion of my Liver that over the next 6 months regenerated.
After having the operation I was taken off the Anadrol and my doctors had to test my blood monthly to review my blood cell counts. Over the next several months I needed blood transfusions.
The risk of these transfusions was after having transfusions it created a greater risk for the Non-related donor bone marrow to fail.
We visited Fairview University Hospital in Minnesota in fall of 2003 to visit with the transplant team that had performed several non-related bone marrow donor transplants for Fanconi Anemia patients.
The search for a match then started again in 2003 and a couple of donors were found on the national Bone Marrow Registry. We then set the schedule for me to arrive at Fairview University Hospital in June of 2004.
In late June 2004 we arrived at the Ronald McDonald house to prepare for my bone marrow transplant on July 7th, 2004.
The two original donors were unable to donate their bone marrow due to being ill sometime within the few weeks leading up to my scheduled transplant.
In those final days a new donor from out east a 28 year old male was found to be a perfect 7 on 7 match. The word arrived that he was willing to donate and would be ready on schedule.
I have never met this man and don’t to this day know his name. I have his bone marrow living inside my body keeping me alive and everyday I say a prayer that his life be blessed for his giving me new life and a second birthday.
The process started with one session of full body radiation and several treatments of chemo therapy to kill my own bone marrow.
I did not wait for my hair to fall out; I requested that a male nurse shave my head. I wanted to lose my hair on my own request and not from the treatments.
At about 1:30am on July 7th, 2004 with my mom and dad at my bedside my new life and bone marrow transplant was performed.
The very next morning and from inspiration from watching Lance Armstrong overcome his personal battle with cancer.
I requested a stationary bike be brought to my room and from that first day I started riding the bike.
Over the next 10 days the bone marrow started to graph in my body and cells were showing up in the samples.
At first the cell counts jumped and then dropped which is normal after a transplant.
I spent the next several months in and out of the hospital at Fairview and spent many days fighting through the soars in my mouth and throat from the Chemo therapy.
These days took fighting hard to overcome the feeling of just wishing I could just be done with it all.
The years that I spent leading up to this fight had prepared me and given me hope with the support of my parents, brother, grandparents, family and friends.
I reached to connect to my faith, my inward personal faith, and the strength of my parents, family and friends. I knew that this battle could be won through the advances in medical science and the belief that we could fight this together.
I could not have kept such a strong desire to overcome without my parents, my brother, family and friends.
I currently attend MATC College and will be transferring to UW Milwaukee in the fall of 2011.
We all need to know:
Hope remains, the work is never done, the passion never dies, our vision is not blinded, our hearts beat faster, our backs never give, the work is ever in progress. Failure is not an option, today is not over and tomorrow here we come! We will defeat cancer on every front. Thanks to all those who are caregivers to the sick and to those that donate time, money and resources to keep our dreams alive.
Best wishes to all.. Thanks for having me share my story…
Read Journal History
Hospital Information: Home sweet Home
9135 S. Patricia Blvd
Oak Creek, Wisconsin 53154
Links: http://www.fanconi.org Learn more about Fanconi Anemia by going to this link.
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