Sean’s Story

Site created on December 10, 2018

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.

Sean (age 23) was born with a rare genetic disorder called Fanconi Anemia (FA). The disease is mostly know as a bone marrow failure disorder. The average age for bone marrow failure a for individuals with FA is seven.  Most afflicted with FA require a bone marrow transplant before they reach adulthood.  Fortunately for Sean, his bone marrow has remained relatively healthy. He has not required a bone marrow transplant and has been able to live an active fairly normal life. Unfortunately  FA is really a DNA repair disorder. This means individuals with FA are much more likely to develop cancer than the general population. We have always worried that Sean may one day develop cancer. Unfortunately that day appears to have arrived.

One Friday December 7th, Sean was warming up for his basketball game at his High School Blessed Sacrament Huguenot (Go Knights!!!) when we was bumped and fell to the court. He struggled getting up and realized that he couldn't move his left arm or leg. After being helped to the bench, he returned to normal after 10 minutes. A doctor checked him out and he seemed to be fine. As a precaution we took him to the ER to have him checked out. An MRI revealed a mass and significant bleeding in his brain. We were transferred to the Neuro ICU at Johnston Willis Hospital for stabilizing and further testing. Our fight has begun.

Newest Update

Journal entry by Kevin McQueen

The results from Sean's bone marrow biopsy came back last week. Of the 20 cells they analyzed, 3 showed an abnormality in chromosome 1.  Fortunately chromosome 1 changes are considered "benign" and not "clinically significant".  Some people have chromosome 1 abnormalities for many years without issues.  However, it is a "change in the marrow", so we plan to repeat the bone marrow biopsy in about 6 months.  

This is the first time we have seen an abnormality in Sean's bone marrow.  Changes in chromosome 3 or 7 are the ones we worry about.  They are precursors to leukemia. If those appear, then we would need to consider going to transplant in short order.  We aren't too concerned at this point.  It's just another thing to to put on our radar to monitor.  We will provide an update after his next biopsy in the late summer.

As always...thanks for all the prayers, love and support. - Sean, Kelsey, Lorraine and Kevin!

 

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