Saturday, October 1, 2011

Two years ago today...

Today is September 30.  The 30th of September.  It is a day that I live over and over and over again.  Ever since, two years ago today, Wednesday, the 30th of September, 2009, I brought my little boy to the pediatritian and our lives changed forever.  My little boy, my baby, the love of my life, the amazing gift I thought we would never have because we were only going to have 1 child, my miracle baby, so smart, so quick, so full of energy and vitality, my youngest son, Carlos's little brother, was diagnosed with cancer.  What is it about that damn word that is so hard to say?  Cancer.  Our baby.  Cancer.  Our son.  Cancer.  Carlos's baby brother that from the day he had just the slightest bit of conciousness as to the world around him, put Carlos on a pedestal and adored him perhapse even more than his own parents.  Cancer.  As parents, I think it is one of the very few things we are truly not prepared for.  I have been living with this for two years and still  cannot accept it.  Will not.  Oh, I live with it.  Yes.  Every day.  It has laid claim to a place in my life.  But I do not accept it.  I won't.  I can't.  My precious boy has cancer.  Stage IV high-risk Neuroblastoma.  And as I sit here writing, I hear and see the resident on duty in the emergency room as she gives me the news. 
Then Dani's face as I communicate the same news to him.  And then the following day, October 1st, when I had to somehow explain to Carlos just how sick his brother was.  And Carlos, just six years old, asking me if his brother was going to die.  And all I could say through the tears was that I didn't know but we would do everything in our power to make that not happen.  And then I took him to a friends house where he stayed for a week while we stayed with Alejandro in the hospital.  And our lives changed forever. 

And yet, here we are.  Still fighting.  Trying to stay afloat in a sea that does with us what it will.  We are thrown in one direction, then another.  When we think we have found our bearings, another surge comes along and carries us to a new place and we start anew.  What was valid yesterday, may not be so today.  For good and for bad.  We have been waiting to hear from Germany.  They contacted us today.  They will accept Alejandro into their antibody program.  There are some prior steps, however.  One is MIBG therapy.  They take for granted that we are currently doing this or are about to.  This treatment does not exist in Spain either.  We have to start making plans on Monday.  They also concider the tumor to be resectable.  !!?  Our hospital has not condidered this possibility to date since the initial partial resection in February proved risky due to the proximity to the sciatic and illliac nerves in the sacrum.  Has the situation changed?  Who is right?  The surgeons at our hospital will review the most recent imaging on Monday.  We will seek further opinions from CHOP and probably Sloan Kettering in New York.  Is this good news?  Yes, of course.  It seems that Alejandro will be able to receive the treatment he needs.  And the steps prior to that?  Once again, we will have to do some more waiting.   CHOP will be a good option for MIBG therapy, but will they accept Alejandro?  More questions to ask.  More waiting.

Thanks for listening...


  1. we await any news you receive -- Gwyn

  2. Thinking about you always.... heartbroken for you. - Jessica