Sue Wile

First post: Jul 19, 2017 Latest post: Aug 16, 2017
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. 

Mom had been experiencing changes with her symptoms from her blood disorder, Polycythemia Vera (PV), since the beginning of the year, January 2017.  Dr. Nguyen was adjusting her medication and frequency of visits.   But her symptoms continued to worsen.  After, much urging -- she made an appointment to see another physician from Dr. Nguyen's group and she was told that she was severely anemic and needed a blood transfusion.  On April 12, 2017, Mom visited Dr. Nguyen and was diagnosed with myelofibrosis (MF), a myeloproliferative neoplasm.

After finding out about the new diagnosis from Mom on Easter, we made an appointment to see  Dr. Verstovsek at MD Anderson Cancer Center on April 25, 2017.  Unfortunately, Dr. Verstovsek admitted us to MD Anderson, because Mom was hypercalcemic and her kidneys were failing.  IV fluids would need to be administered and calcium levels would need to be monitored.  Bob and Melody handled the discharge from MD Anderson on May 5.

Over the last several weeks / months.  R. J., Amy, Bob, Melody and I have been on a rotating schedule of caring for mom in her home.  Fortunately, mom has been able to walk with the assistance of a walker or rollator.  Unfortunately, she hasn't had a good nights sleep in months -- between night sweats, anxiety, neuropathic pain in her legs/ankles.

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