Barbara Johnson

First post: Nov 3, 2017 Latest post: Jan 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.  

  Mom's story began on August 17th, 2017,  After a trip to the Dr due to extreme fatigue, chills, fever and various other symptoms, it was discovered that Mom's WBC (White Blood Count) was virtually  non existent.  The normal range for WBC is 4-10, mom's is .4.  Therefore, her immune system is completely compromised and leaves her very susceptible to any type of infection or illness.  She would not be able to fight it off with no immune system.  This then began a long and continuing journey of trying to find a diagnosis.   

 They ran a gauntlet of test including Bone Marrow Biopsy, body scans, MRI, more blood work than you can imagine, infectious disease protocol, and test I can't even remember.  At first glance the Dr's thought it was a blood disease call LGL.  LGL stands for Large Granular Lymphocytic Leukemia.  The Dr stated that LGL is a chronic condition, slow growing and treatable.  At the time no test came back as Definitively positive to the diagnosis but most likely.  The Dr then started mom on  a treatment of Chemo that was dosed in pill form, called Methotrexate and only consisted for taking a treatment of 6 pills once a week.  The Dr's recommended that she undergo a 5 week treatment.  They felt that they would see improvement after 5 weeks.  However, there was no improvement, so treatment was discontinued.  After the Dr at CBH Oncology discontinued treatment, he suggested that she seek a second opinion at The Markey Cancer Center.

  As of October 16th, mom is under the care of the  Hematology Department at The Markey Cancer Center.  They have run numerous test including another Bone Marrow Biopsy, PETscan and lots and lots of blood testing.  We have a follow up appointment Thursday, November 2nd to review the results of test and hopefully a diagnosis.   

As you can imagine, Mom is very weak due to her condition as well as no activity for  over 2 months now.  There have been 3 trips to the hospital and 2 stays at a rehab facility.  As of October 20th mom is back home.  I can not say enough about the love and compassion that my dad has  displayed in taking care of mom daily.  He has been by her side non stop since the 1st night.  57 years of marriage!!!  Mom does some small physical therapy each day to try to regain some strength and stamina.  She gets tired quickly and is restless.  As you know, mom is not familiar with sitting and letting others do the work.  She say's that she feels very frustrated not being able to get up and help.  We have assured her that her #1 job is to get well.  We will take care of everything else.  

People have asked about sending flowers, unfortunately due to mom's condition she can NOT have  fresh flowers.  

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