Wednesday, October 30, 2013

Medical Update

After some routine blood work this summer, I learned my platelets had dropped from 100 in March to 83 in August.  Now, just some background information, a normal person has 150-400 platelets.  I have "run low" my entire life, never having had more than 105.  However, this drop was a little concerning, so my primary doctor suggested I reach out to Mom's oncologist/hematologist at USC who treated Mom.  Dr. Casey O'Connell is not only one of the nation's leading physicians in bone marrow failure diseases, immune blood disorders, myelodysplastic and myeloproliferative disorders, but she is one of the kindest, most genuine people I've met.  She recommended I come see her and that we do a bone marrow biopsy just to be safe.  So on October 2nd, I went in for my first bone marrow biopsy.

Two weeks ago I went in for the results.  I learned I have Familial Platelet Disorder with a Predisposition for Myeloid Malignancy (FPD/AML).  I have a gene mutation in my 21st chromosome called RUNX1, which has a 45% chance of developing into acute myeloid leukemia or MDS (this could higher considering my family history).  Only 200 families currently are known to carry this gene (although this may be underestimated as it is now being increasingly recognized due to enhanced awareness).  So basically I'm an X-Men!  I'm still working to uncover my super power though :)

I am very hopeful and confident that I am in the 55% that will not be affected, and I will continue to remain positive.  I am surrounded by the best team of doctors at the USC Norris Cancer Center, led by Dr. Casey O’Connell who is one of the leading experts in this area.  They will monitor my blood counts on a monthly basis and look for any anomalies.  If anything arises, we are way ahead of the game and have the advantage of time and preparation.  Down the road it’s possible I may have to undergo a bone marrow transplant as that is the only “cure”, but there is no sense of urgency for that in the next year or so.

If you want to read a little more about this, here are some helpful links:

Faith is stronger than fear.   The odds are in my favor and I have lots of eyes on me/my blood!  I will practice patience and serenity, and believe that I am healthy and will be so for a very long time :)


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