Weston Robinett

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.  After 13 days of fever and many doctor visits  ( saying it was a virus and ear infection) we went to Children's Mercy's urgent care facility in Independence.  Something just wasn't right.  After running blood work they found that had abnormal counts and it was looking like leukemia. He was taken by ambulance then to Children's Mercy downtown Kansas City. It was then confirmed through blood work that it was indeed Leukemia. AML  (Acute Myeloid Leukemia), specifically . It was also found that he had the CBFA2T3-GLIS2 mutation, which is extremely rare and gave him a poor prognosis (Weston was the first one to ever test positive for it at Children's Mercy).  Since then Wes has undergone several rounds of chemo, a bone marrow transplant, and  several stem cell infusions. His AML is currently in remission, but is battling chronic Sclerotic skin Graft vs. Host Disease and now has been diagnosed with a low grade glioma (brain tumor).