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Xander's dad and I met at MU in the fall of 2010.  After several years of dating, we wed on June 27th, 2013.  We prayed for God to bless us with a child and He did.  We were ecstatic when we found out that we would be having a son.  At 27 weeks gestation, we found out that our perfect little boy likely had a rare genetic disorder by the name of Beckwith-Wiedemann Syndrome(BWS).  This was suspected due to a very large tongue present during ultrasound and large gestational size along with an excess of amniotic fluid. 
 
Xander entered this world a couple months early due to me developing preeclampsia.  He was delivered on January 23rd, 2014 at the MU Women's and Children's Hospital, weighing a whopping 6 lbs 9.5 oz and measuring 18 inches long.  He was by far the largest preemie in the NICU.  Genetic testing confirmed our suspicion of BWS and we began our journey down this road of uncertainty.  This diagnosis not only meant Xander would be a larger child (above the 90th percentile), and would likely need tongue reduction surgery; it also meant that he would be regularly scanned for malignant abdominal tumors.  Xander is 600 times more likely to develop childhood cancer than a child without BWS, which is devastating.  At just 2 1/2 months old, lesions were found all over his liver during an ultrasound and a surgical biopsy confirmed any parent’s worst nightmare, Stage III Hepatoblastoma.  Since Xander was still in the NICU on high flow oxygen support, he began chemo before he ever even got to sleep in his own nursery or let the sun shine upon his perfect little face.
      
After four rounds of the best chemotherapy known to treat this type of cancer, he had 15% of his liver removed in hopes the cancer would be gone for good.  He received two more rounds of chemo after surgery to kill any remaining microscopic cancer cells.  Xander finished his sixth round of chemo in October 2014 and in November there was no evidence of disease on his scans, which meant he was cleared to travel to St. Louis for tongue reduction surgery. 
 
In January 2015 we celebrated his first birthday and the very next day received a devastating call that his MRI results from the week prior showed at least three masses in three lobes of his liver. We were again dealing with recurrent stage III liver cancer.  With little to no options locally, we sought out the best doctors at one of the top hospitals for pediatric cancer and liver transplant in the U.S.  We traveled to Cincinnati Children's Hospital right away and got him placed on the transplant waiting list. 
 
After just 17 days and many declined offers, Xander received a perfect match whole organ and was transplanted in the wee hours on March 3rd, 2015.  He did great for the first two weeks post transplant then a series of unfortunate events redirected our future.  He contracted two viruses the week of March 16th, HHV6 and Adenovirus.  He also had two allergic reactions to IV Tylenol and Lipids.  That week his bile ducts started vanishing and he began to turn yellow.  His bilirubin continues to go up and after months of waiting and hoping the graft would repair itself, it's becoming apparent that only a miracle will heal Xander's liver.  He has recently received his second liver transplant and is recovering as Xander does, like a champ. We appreciate any support and prayers as he recovers and gets stronger by the day.