Biopsy Results

In July, Ethan was diagnosed with a rare bone marrow condition, a Myelodysplatic Syndrome (MDS).  At the same time, we learned that he also had Monosomy 7, a chromosome syndrome that eventually leads to Leukemia.  The only treatment and hope of a cure for Monosomy 7 is a bone marrow transplant.  And so for the last month or so, ‘Be The Match’ has been searching for a bone marrow donor that would be well-suited for Ethan.  The best match is a 22 year old male (that’s as much as we know) who will be available in October.

In addition to searching for a donor, doctors have watched Ethan’s blood counts closely.  These numbers (which had almost completely ‘bottomed-out’ in early July) improved quickly and eventually returned to normal levels.  This improvement has been quite a surprise to our doctors.  In fact, because Ethan’s counts have been so inexplicably good, his doctors ordered another bone marrow biopsy to get another look and hopefully a better idea about what is happening in Ethan’s body.  This test was done Tuesday (8/30) at Children’s Hospital in Nashville.

This afternoon the hematologist/oncologist from Vanderbilt called with the results of the biopsy.  He began by saying he had ‘very good news’ for us.  Although the test had not been entirely completed at the time of our conversation, initial results show that only 9% of Ethan’s bone marrow cells contain the chromosomal disorder, Monosomy 7.  In July, this number was 100%!  Once again, doctors are somewhat baffled by these test results.  It is certainly not what they expected to find.  As our doctor explained today, he’s never seen this ‘pattern’ in a Monosomy 7 patient. 

In light of these good results, the doctor is suggesting that we hold-off on the bone marrow transplant.  Although he predicts that Ethan will still need a transplant in the near future, he explained that it is difficult to justify a transplant considering these latest numbers.  In the meantime, Ethan’s counts will be monitored bi-weekly and another biopsy will be repeated in 3 months.  There is no way of knowing if this changes Ethan’s chances of developing  AML or just how long his marrow might produce these good cells.  The doctor believes his counts will drop again.  If they do, another bone marrow biopsy will be needed.

And so we are both encouraged and puzzled.  If the most well-respected hematologists/oncologists don’t know what to make of Ethan’s situation, then we certainly don’t stand a chance at explaining or projecting it.  But more than ever we are convinced of this…

God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling.  Psalm 46:1-3

Journeying On,

Jared and Sara