What to do, What to do… Hurry up and wait

Hi Everyone,

Well, no news is good news.  It’s been a while since we’ve made a posting.  In the mean time, we’ve had a few weeks of peace and quiet.  So, what’s going on?   There are a lot of positive things that have happened.  So, let’s get to it.

First is the preamble.  You all know that Maya is fighting MDS.  And for it, we’ve been getting Vidaza.  It is not curative.  That is to say, Vidaza will not get rid of the disease.  But it’s been doing something for Maya. All the blasts in her peripheral blood are gone.  Additionally, no trace of the translocation are found in her bone marrow.   MDS is characterized by translocation of portions of DNA from one place to another.  In Maya’s case, it was from (1, 7) and (11,17).  This simply says that part of her chromosome switched places, from position 1 to 7 and 11 to 17.

The thought is that there are some cells in Maya’s bone marrow that is carrying the translocation (IE, MDS/AML).  However, we can not detect it through the normal test.  There was a more comprehensive test to see if the translocation could be found.  We did not find any.  In other words, at this point, there is no detection of MDS/AML in Maya’s blood!  All good, right?  Right!  Except… what do we do now?    Same questions again.  Some of the questions are:

  • If we don’t do anything, it is likely going to come back… So do we head into BMT?
  • BMT is exceptionally hard on the body.  Maya may succumb to the therapy.  Matter of fact, the therapy may kill her over the disease.
  • If we don’t do anything and MDS comes back, it may come back with a vengence.
  • If we don’t do anything, neuroblastoma may come back with a vengence.

And because what we are dealing with is so rare, there are no data to back us up.  So, we’re flying blind, at night so to speak.


So, for the past few weeks, we almost forgot all about MDS and neuroblastoma.  Maya enrolled in a soccer league and we’ve enjoyed ourselves with daily activities.  We are stressed about work and such.

And as is the case with us, we are suddenly found with an increase in creatinine level.  Maya only has a single kidney and so, we tend to over-react.  Why?  What’s happening.  Why is her creatinine level increase?  This event caused some scans and meetings with the doctors and technicians.  The long and short of it, Maya’s kidney seems fine.  With a bit of saline bolus, her kidney function returned to normal and we’ve all sighed a breath of relief.

We had an ultrasound done this morning and just got the results.  Kidney is fine.  Nothing unusual was seen.  We did see a new mass that was not noticed before.   Is this really new?  Don’t know yet.  So, we have a week to wait before another MIBG scan is scheduled.  If it lights up, it may very well mean a new tumor.  We will then follow up with a MRI to see what the activity level is in this new mass.

The peace we’ve enjoyed for a couple of months have dissipated in an instant.  It may be nothing but the discrepancies that occur with ultrasound.  But the fear is back.  We can only wait another week and see what’s going on. We can only wait til next week to see what we’re dealing with.  Please say a prayer for this amazing little girl, who lives her life like we all should.