Hospital Help: Get Sawyer To Vandy

Sawyer's Story: Three years ago, a fighter was born. Our son Sawyer was born with a rare form of pediatric end stage liver disease called Biliary Atresia. This kept his liver from being able to drain bile. He was jaundice...very jaundice...and tests from his doctors were able to diagnose him. When he was four weeks old, he underwent a surgery called the Kasai procedure. This used parts of his intestine to try to rebuild the damaged bile ducts. The procedure failed, and toxins continued to build up in his tiny body. When Sawyer was 3 months old, he was placed into foster care after being neglected by his birth parents. He weighed less than eight pounds. The neglect had caused medical setbacks that left doctors wondering if he would survive. He was placed with us, his forever family, on March 25, 2015. We learned everything available about his condition and what was needed to save his life. He had a feeding tube placed in April and started to gain weight. We got all of his medications ironed out and made up for the time when no one was giving him the proper doses. We loved him so fiercely and our community rallied around him and lifted him up in prayer. He stabilized and we held on. The next step after a failed Kasai is a liver transplant. Sawyer is followed by the incredible team at Cincinnati Children's Hospital, a four hour drive from our current home in West Virginia. West Virginia does not have a pediatric transplant center in any of its hospitals. This fact becomes very important as we move on and is the basis of this fundraiser. Sawyer was admitted for complications a couple of times between April 2015 and May 2016, but was over all doing alright. We celebrated his first birthday as a victory in life. Along the way, we had been told that Sawyer would need a full liver from a deceased donors of small size. We cried constantly at this guilt. How could I be waiting anxiously for someone else's child to die so that mine could live? It wasn't fair. Nothing was fair. But then, good news came. Sawyer would be able to take a partial liver from a living donor! Now we just had to find a match. And it had to be a good one. Relatives are the most common choice for living donation, but Sawyer was still in our care as a foster child and blood relatives were out of the equation. The screening is so rigorous that we knew we were on our own. I (one of Sawyer's moms) fit the initial criteria and asked to be tested further. It is a slow and long process. On May 24, 2016, Sawyer was admitted to the hospital again. This time, his team told us we would not be going home again without a transplant. We were now hostages, I mean guests, of Cincinnati until further notice. But then good news came. I was a match. Not a good match, a perfect match. A perfect match to a child I didn't birth, but had been placed with us by chance and divine intervention. We were elated. And terrified. My wife would have to take a ton of time off work, family would have to help us from out of state, but it was go time. On June 3, 2016, I gave Sawyer 15% of my liver. Recovery wasn't easy for anyone, but we got there. At the end of July, we got to return home to West Virginia. We were still coming back to Cincinnati every few weeks for follow up, but we were home. On January 13, 2017, we finalized the adoption of Sawyer and his big brother Gavin. Our family was happy and healthy. Everything was perfect. Until February 18, 2017. Sawyer got a fever that wouldn't go away. We took him to the local emergency room and he was admitted for observation. We gave them a detailed account of his condition and Cincinnati Children's was checking in constantly, but they had never treated anyone like Sawyer before. I know this because they told me. In one instance, they mistakenly gave him 5x his dosage of immunosuppressant. Cincinnati asked us never to admit there again and to only use their ER as a transfer point to hitch an ambulance ride back to our liver team here. Once we were back in Cincinnati, we learned Sawyer's journey was far from over and he still had to fight. He had developed post transplant lymphoproliferative disease (PTLD) and had grown tumors in his lungs. We beat liver disease and got a type of cancer? Are you kidding me?? We now had a new team to add in Cincinnati. Oncology. Sawyer was treated with 6 rounds of an antibody called Rituximab and 2 cycles of a low dose chemo called Cytoxan. The tumors shrunk. We changed his medications some, and everything went back to normal. Other than a liver biopsy in August 2017, we have been out of the hospital except for follow up. But yesterday, November 26, 2017 (Sawyer's 3rd birthday), he got another unexplained fever. Since we can't admit locally for testing and diagnosis, we came back to Cincinnati to find out what is wrong. We're unsure as of yet but I promise to update as we know more. Why Vanderbilt? Why Nashville?: Vanderbilt Hospital has a pediatric transplant center. They have an amazing working relationship with Cincinnati Children's, and we have been assured by our team here that they would be comfortable with us being seen there instead of having to come four hours for every emergency. If we lived near a hospital that could treat Sawyer, it would mean so much less stress. Less emotional turmoil, less financial burden. Nashville is the city where I met my wife, the city she still considers to be "home". There are more job opportunities there which better allow us to care for our situation. Our Family: We are made up of two dedicated moms, two older brothers, Sawyer, and a baby sister. So Why Are You Broke?: Because of Sawyer's compromised immune system, it is unsafe for him to attend daycare. Because of his medications, warning signs to watch for, and ease of ending up hospitalized, I stay home. This leaves us on one income managing not only our normal family expenses, but the expense of constant travel to and from Cincinnati. His past admissions have drained our savings and we live paycheck to paycheck. I want to be very clear though. We are not asking for long term support. We are not asking to raise enough money to have no worries and start taking vacations. No. We are only asking for your help in getting our family moved from West Virginia to Tennessee. This will mean first month rent and security deposit on a new home, the moving truck (doing it ourselves to save. Not hiring help), and deposits and startups for new utilities. If you can find it in your heart to donate even a little bit, we will be forever grateful. Thank you for taking the time to read this.
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    • $50 
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    • $100 
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    • $50 
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    • $500 
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  • Anonymous 
    • $50 
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Organizer

Carissa Bailey 
Organizer
Dunbar, WV
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