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I AM SCAR BOY

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Seth Upchurch Howard needed a liver transplant. He was born with a rare genetic liver disease- Progressive Familial Intrahepatic Cholestasis type 3, also known as PFIC-3. By the time Seth was 8 years old the inflammation in his liver had caused liver cancer- hepatocellular carcinoma. His doctor at Children’s Hospital Colorado, Dr. Narkewicz, had advised that a transplant was the best treatment for the cancer. Dr. Narkewicz had been monitoring Seth and treating Seth medically from a satellite clinic in Billings, MT since Seth was 2 years old.

Seth was diagnosed with HCC in June 2013 and was put on the transplant waitlist in July 2013. The transplant team at Children’s Hospital Colorado advised that we move there to wait for the transplant. Luckily, we had lots of family in Colorado and a great support network while we stayed with my parents (Seth’s grandparents) in Lake George, CO. We waited for several months and finally got the call in early October 2013. Of course we got the call when we were back in Montana visiting my husband. Up until that point, we had a lot of anxiety and worry that Seth’s cancer would metastasize.

Seth’s first transplant initially went well. His surgeon, Dr. Michael Wachs, had remarked that it was one of the best transplants that he had performed. After 24 hours though, Seth was gravely ill. He had had an acute rejection episode and would need another transplant. He was put at the top of the transplant list, because of his critical condition and received his 2nd transplant within 48 hours. Unfortunately, he had another complication with the second transplant–hepatic artery thrombosis where the hepatic artery closes off blood flow to the liver. The surgery team went in to repair the hepatic artery which had caused damage to his bile ducts. After that surgery, he seemed to be doing ok, but the liver was sick and causing problems, such as intestinal bleeding and ulcers. After numerous surgeries and procedures to stem the bleeding, it was determined that Seth would not survive unless he had another liver transplant.

We were devastated, but we could tell that Seth was so critically ill at that point and it was apparent that things were not going to get better without one. Seth had worked too hard and had gone through too much not to take the chance of getting that third transplant. We were very concerned because a child had passed in the ICU that same week while waiting for a liver transplant. This was definitely the lowest point we reached at the hospital- it was very hard to stay strong and have hope at this time. Fortunately, Dr. Wachs was able to find a provision in the transplant waiting list that allowed Seth to go to the top of the list because of his hepatic artery thrombosis. We received a call on Christmas day that there was a liver for Seth. We were trying to be positive, but he was so sick that day and all he wanted for Christmas was a drink of water all to himself, but the water was making him throw up and we couldn’t honor that Christmas wish. We also told him that day that he had to have another transplant, which he wasn’t aware of up until that point.

His Grandma spent Christmas night with him and he told her that it was the worse day of his life. She said that it was going to get better from here on out. She was right…that third transplant seemed to do the trick! Shortly after the transplant, he began a long recovery, albeit more normal than the course he had taken up to that point. This included learning to walk and regain his fine motor skills again. He was so weak from not moving very much for 4 months. Seth worked very hard to walk again with the help of his amazing occupational and physical therapy team. He was released from the hospital in February 2014. He had quite the reception and lots of visits from his liver team, the ICU nurses, and, of course, Dr. Wachs.

It has been about three years since we received that call that the transplant team had a liver for Seth’s first transplant and I am happy to report that Seth is doing great! He is strong and healthy and loves biking and skateboarding. We recently rode the Hiawatha Railroad Trail in Idaho which is a 13 mile bike trail. (Granted it is mostly downhill, but Seth wasn’t even phased.)

Seth has grown into a kind and thoughtful young man. He loves animals and has started volunteering at the local animal shelter. He remarks that his Make a Wish trip to Florida was such an amazing treat after the awfulness of the hospital. He has been inspired to talk to local charities about his hospital struggles and what the Make a Wish trip meant to him. He says “My Make a Wish trip was so inspiring to have fun after the torture of the hospital that I want other kids to be able to experience that after their struggles in the hospital.” He always ends his story with the same message – “Be a donor!” After all, he wouldn’t be alive today if it were not for the amazing life-saving gifts of organ donation.

Seth was inspiring through that whole awful experience because he stayed thoughtful and positive and always tried to do what the doctors and physical therapists asked of him. I can only hope that his story can be an inspiration to other people going through tough hospitalizations, like ours. It is never easy to have to go through a transplant, but when it turns into a long term struggle, like ours, it is important not to give up hope.

By Tammy Hinman

Seth’s Journal Entry

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