Dance Like No one is Watching, on the razor’s edge

That’s my daughter.  She dresses funny.  She speaks her mind.  She’s a language cop and she definitely marches to her own drum beat.  And she’s unique… more than one can possibly imagine.

About eight months ago, we found out that Maya developed therapy induced MDS;  a precursor to AML.  Well, you all know this.   Since then, we’ve had many ups and downs.  There were moments when we feared Maya coughing, because her platelets were so low.  We feared for spontaneous internal bleeds.   We saw angry bruises on her hip from her bumping into the TV stand.  And I don’t mean a cute little bruise either.  We have taken Maya to sick-kids emergencies because of a … simple fever.  Not enough platelets, white blood cells etc .  We have worried over Maya because she became neutropenic after the rounds of Vidaza.

Today was a good day.  I had a chance to discuss Maya with her haemotologist, Dr. Igal Dror.  Well, it seems Vidaza is working.  Maya is N.E.D (No Evidence of Disease) from MDS.  Maya’s blood is for all intent and purpose, normal.

She is not cured from MDS.  We know Vidaza is not curative.  We still have the dreaded Bone Marrow Transplant in our future.  And the chances are, MDS/AML will return at some point.  But the results today was not expected.  Dr. Dror was surprised to find such a great response from Maya.

So now, we are discussing what her maintenance regiment should be.   There are worse things!    Even a week ago, I wanted to take Maya away.  Vancouver, for sure.  Ecuador maybe?  Indira objected.  Over night, things are different.  We can make plans.  Cautiously, but nevertheless, truly we can.  Maya wants to go help baby turtles hatch. (That was my doing…)  And so, perhaps we will.

Oh… BTW, here’s something else for ya!  Of course, for BMT, the ideal outcome is if Maya received a bone marrow from a matching donor.  You’ve heard similar stories in the news I’m sure.  “So and So is looking for a bone marrow donor…” .  We’re one of those people now.  Except… Indira is latin and I am Korean.  Finding a match is exceedingly difficult.  There are amazing stories of a Chinese mother going back to China, to a small village where her  family came from to look for a matching donor.  There are no Ecuadorian, Korean villages. So, we will perform another BMT with Maya’s own marrow.  But this is not now.  It’s in our future at some point.

For now, we can enjoy Maya… dacing around as if there isn’t a care in the world.

May we all live in the moment with those that mean so much.