Susan’s Story

Site created on March 23, 2020

Welcome to my CaringBridge website. We are using it to keep family and friends updated in one place. I appreciate your  love and support.  As many of you know, I've had 2 types of blood disorders for many years.   One of these disorders caused chronic low white blood cells (the cells that fight infection).  I found out 2 weeks ago that this disorder had progressed into a rare form of chronic leukemia called CMML (chronic myelomonocystic leukemia).  Without treatment this will progress fairly quickly into a fatal type of acute leukemia.  The treatment for this only works less than 50% of the time, and is only temporary. The only chance for a cure is a bone marrow transplant,  and that is what I'm doing.   I've laid out the steps in the process in the journal.  We'll keep you updated. Thanks, Susan

Newest Update

Journal entry by Susan Keesee

Hi All:  Well, it's been about 3 months since I wrote an update, so I'm overdue !  The good news is that I am doing great.  I have been off all of the immunosuppresion drugs for 3 months.  They tell me that my immune system is almost back to normal.  All of my lab tests are normal. 

About the only lingering issue I have is mild GVHD (graft vs host disease) of the skin, which I've had since September.   Fortunately, I'm managing this with topical cream.  

I will see the OHSU transplant doctor in July, then on my 1 year transplant anniversary in August I'll have another bone marrow biopsy and receive a huge list of vaccines.   I no longer have my original immune system, I have the immune system of the newborn baby donors.  That means that I start over getting all vaccines.  After August I'll be followed by my original hematologist, and just be seen every 6 months at OHSU until I hit the 2 year mark.

I'm walking, golfing, and  put my boat in the water this week !  I've also been getting together with friends and family that are vaccinated, and that has been pure joy !

Hope all of you are healthy and enjoying the beginning of summer.

Love to all,

Susan

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