Sep 29, 2017 Latest post:
Oct 10, 2017
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Our son Charlie, doesn't follow the rules.... from the moment we met him at 18 weeks into our pregnancy when he was given a fatal diagnosis of fetal hydrops, he has turned our world upside down. Our roller coaster ride continues on through his tenth year of life and as we come home from his 158th hospitalization, surgery, procedure or ER visit. He continues to astound us with his courage, bravery, forgiveness and joy. He lives life to the fullest, every minute of every day and he brings happiness and laughter, and kisses and hugs to everyone he meets. His original diagnosis of fetal hydrops miraculously resolved on its own with no medical explanation. He was born into our family with a diagnosis of Down syndrome which he seems to completely ignore. He came home to us with oxygen tanks and monitors and gathered new diagnoses of severe tracheobronchiallaryngealmalacia and chronic atalectasis. He has a tracheal bronchus and had severe reflux and aspirated even his own saliva. At five months of age he had a nissen fundoplication and a g-tube placement. He has had virtually no food by mouth to this day. He had several months of growth and clear respiratory times. Starting in November of 2005 through the beginning of 2011 we were in the hospital almost every month with a combination of respiratory issues and increasingly severe gastrointestinal problems. In December 2006 he was diagnosed with global pseudo-obstruction and since has had several rounds of TPN, a J-tube placement and finally an ileostomy in June 2007 to relieve the pressure in his severely extended belly. In April 2009 we placed a mickey button in his colon (cecostomy) in the hopes of not having to remove the colon permanently. In November 2009 we had a mediport placed to give IV fluids at home in hopes of cutting back on hospital visits. Most people live with one port their whole lives. Charlie is on his 10th in four years due to life threatening infections originating from the leaching of bacteria through the inflamed colon. With each dangerous sepsis, his port has been replaced with increasing difficulty in his tiny veins. However the IV fluids make all the difference to his overall health and we have experienced decreased hospitalizations since the placement of the port. In August 2010, we made the very difficult decision to remove the majority of his colon leaving a 6cm stump and hoping for a possible reconnection in his adulthood. By December it was clear that the stump had to go because it caused another sepsis in the port and severe pain and bleeding. On Jan 3 2011 we removed the remaining colon and rectum which had turned gangrenous and were left with just scar tissue behind the anal sphincter, permanently removing all hope of reconnection. For a year Charlie was remarkably healthy. Beginning in October 2011 he began to experience excruciating stomach pain and bleeding through the gtube, ileostomy and by the summer of 2012 he was bleeding from the minimal scar tissue left in his bottom. An endoscopy showed he had severe hemorrhagic gastritis and duodenitis. All the doctors across the land threw up their hands because they didn't know why it was happening or how to stop it. We worried it would follow the path of the colon and become dangerously infected and removing the stomach is not as simple as removing a colon in terms of living a long life. In a follow up endoscopy in January 2013 through a random biopsy the very rare gastric carcinoid tumor was found. We have now added a cancer diagnosis to his list. Gastric Carcinoid (also called Neuroendocrine) for children is extremely rare; Charlie is about 1 in 14 million and the only known patient with carcinoid and Down syndrome. We traveled to the University of Iowa numerous times to see the only pediatric carcinoid specialist in the world and have begun treatment. Unfortunately, this type of cancer only mutates the cells, it doesn't grow and get big, so it is very difficult to locate and remove. The doctors have essentially said that we have to learn to live with it and the horrible symptoms it causes (pain, bleeding, diarrhea, hives and eventual heart issues) until we find a cure or he dies. So we are looking for a cure. In November 2016 we got the news that his cancer has metastasized into his lymph system. On December 15, 2016 he had two malignant lymph nodes removed from his abdominal cavity. Our marvelous Dr. O'Dorisio in Iowa has now upped his medicine from four shots a day to 24/7 subcutaneous infusion with an IV pump. Through it all, Charlie smiles and laughs and takes us on a journey of love and life... real life. We invite you to join the journey but don't be surprised by hills and valleys, the sudden curves and darkened tunnels.... We thank you for your presence in our lives and for your support, prayers and love. Kymberly, Brian, Sophia and Charlie