• Youngster giving back to Make-A-Wish

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  • Katie Peterson | Staff Writer
    Sam Grover seems like a normal, happy, healthy 8-year-old who loves art, his family and his best friend, Kai, the family labradoodle. However, this MacArthur Elementary School third-grader had to fight for his life to get there undergoing a liver transplant at just 1 year old in September 2011.
    Now, Sam will serve as the first co-chair of Make-a-Wish Missouri’s Bubble Ball for Wishes Sake Sept. 28 in Kansas City, Mo.
    Sam was born on Aug. 13, 2010, and though he was three weeks early, he was healthy and considered to be full term. However, things changed when he went in for his two-month wellness check on Oct. 13, 2010.
    When the doctor checked his eyes with a flashlight, she noticed some yellowing so she ordered bloodwork. People have two bilirubin markers, an indirect and a direct. A high indirect bilirubin level is common in children with jaundice. A high direct bilirubin level indicates an issue with liver function.
    “Sam’s direct bilirubin was high and that’s what got her concerned,” said Darien Grover, Sam’s mother. “(The doctor) called us and said, ‘I already called the team at Westchester Children’s Hospital (N.Y.) and they’re already waiting for you.’”
    From there, Sam went through a week of tests before he was diagnosed with biliary atresia.
    According to Cincinnati Children’s Hospital, biliary atresia is “a rare disease of the liver and bile ducts that occurs in infants. When a baby has biliary atresia, bile flow from the liver to the gallbladder is blocked. This causes the bile to be trapped inside the liver, quickly causing damage and scarring of the liver cells and eventually liver failure.”
    “It was a big blur up until he was diagnosed,” Grover said. “When we were in the hospital that first week, we had a lot of doctors coming in and explaining things and worst-case scenarios. This was the worst-case scenario. It was like living in a vacuum. Everything was just a whirlwind.”
    With a confirmed diagnosis, the first step was to perform a Kasai procedure, where the surgeon took a piece of Sam’s intestines and attached it to his liver so the bile had a place to drain, Grover said. The surgery was on Oct. 21, 2010, and he was discharged shortly after. However, it wasn’t the end of Sam’s struggle.
    “We knew after the first surgery that it was basically about buying time because he was so small and it was really about getting him bigger,” said Sam’s father, Lt. Col. Josiah Grover, assistant professor in the Department of Joint, Interagency and Multinational Operations of the Command and General Staff College. “We started doing a lot of research on transplant centers and how transplants happen. I went from reading a lot of history stuff to starting to read a lot of medical journals.”
    Page 2 of 3 - In January 2011, Sam was officially put on the liver transplant list and the Kasai procedure seemed to be keeping him healthy. However, in August 2011, Sam had a major gastrointestinal bleed, forcing a transplant date to be set for Sept. 19, 2011, at Yale New Haven Children’s Hospital in Connecticut with Dr. Sukru Emre and Dr. Manual Rodriguez as the chief surgeons.
    “(The surgeons) knew once the major bleed in August happened that it was a race against the clock,” Josiah Grover said. “He was visibly much sicker.”
    The transplant date was in place and the donor was Josiah Grover.
    “We knew based on blood match that he and I were pretty compatible,” Josiah Grover said. “He listed in January and I went down to get the work up done in March, getting images and CAT scans and 3-D CAT scans and stress tests. We wanted to go the living donor route.”
    However, a match between Sam and his father did not mean they should start preparing for the procedure.
    “The surgeons, they would prefer a cadaver donor just so they’re not putting two patients at risk in the operating room. A living donor is the last resort,” Darien Grover said.
    “They had to balance, too. They want to hold off as long as possible so he could get bigger and stronger before transplant, but they also want to make sure he didn’t get too sick because then it would be harder for him to come back after transplant.”
    After six weeks in the hospital following his transplant, Sam was discharged and, despite a few minor hiccups in the first year, he has not had any complications.
    While the Grover family was still living in New York, Sam was approved for a wish from the Make-a-Wish Foundation in 2014. His wish — a puppy. However, because of several life obstacles, his wish was deferred until August 2016 when the family applied again after moving to Fort Leavenworth. In September 2016, Sam’s wish was granted and Kai came home with the family on Oct. 28, 2016.
    “I really wanted somebody to cheer me up and when I’m lonely I can have a friend that is always with me,” Sam said.
    Kai has been more than a friend to Sam. Though Sam has not had any serious complications since his transplant, he does have routine biopsies and tests every year to make sure he does not develop fibrosis in the liver. Darien Grover said these tests often give Sam anxiety and Kai helps him through it.
    “Kai has definitely been a blessing to us. He is Sam’s best friend,” she said. “He has the ability to calm Sam down when he gets anxious about the biopsies. He has the ability to bring the family joy and that was a real treat to be able to see that happen after everything that Sam’s been through.”
    Page 3 of 3 - After Sam’s wish was granted, Make-a-Wish Missouri asked the family to share their story at the first Bubble Ball for Wishes Sake in 2017. Ever since, Sam and his family have been actively involved in raising funds and awareness for the foundation, which lead to his selection as the co-chair.
    During the event, Sam will also have a painting he made auctioned off with the proceeds going toward granting wishes. The painting features a vase of flowers created on a large canvas with tempera paint and is based on the work of folk artist Heather Galler, which was taught in art class at MacArthur.
    “Sam is an enthusiastic artist,” said Gretchen Martens, MacArthur art teacher. “He has great ideas and he tackles each assignment with a big smile.”
    “I like art just because it is cool and has all those colors and strokes and designs,” Sam said. “It was awesome to be able to donate (the painting).”
    Darien Grover said the family likes being able to share Sam’s story because it brings awareness.
    “It is important to bring awareness because biliary atresia is very rare and they don’t have a known cause for it and there is no cure for it,” she said. “By bringing awareness to it, hopefully one day a cause can be found. If we can find a cause then prevention can happen and then another family won’t have to go through what we’ve gone through.
    “Sam’s is a story of hope because even though we don’t know what the future is going to bring, right now, in the present, it is a successful story,” Darien Grover said. “There are other people that are just going through this, and I think by getting this story out, there is hope for them, too, and brings them hope for their family.”
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