It's a no go...

The only thing you can count on is not counting on anything! We should have known from the unpredictability of leukemia that this could happen, but we were still surprised.  Kevin's anonymous donor has withdrawn due to medical issues.  We found out last night from Dr. Strair, Kevin's oncologist, just 3 days before he was to start intensive radiation to destroy his immune system.  Due to privacy concerns, we can never know what happened to his donor, but it could be anything: a pregnancy, an injury, a heart issue, anything. The end result is that we're back to square one, beginning a new search for a donor. 

We were both determined and mentally prepared for Kevin to be admitted on Sunday and begin his transplant on Monday, so this has taken the wind out of our sails a bit. We've had a crazy 24-hour scramble to understand our options going forward and to try to get things moving for next week.

We have 2 possible options.  There is a secondary anonymous donor that may be an option.  You may recall that Kevin's first donor was a 9 out of 10 antigen match.  This secondary donor is a 8 out of 10 match, not as good but still a possibility.  Our doctor has contacted the National Marrow Program and asked that this donor be brought in for testing.  Despite an accelerated effort, this process may still take a few weeks, as they must locate and contact the donor, determine if he/she is still interested, and then begin physical exams.  Needless to say, Kevin and I are a little gun shy about the unpredictability of using an anonymous donor again! It's especially frustrating to be waiting and feeling like we are wasting time, not knowing when/if the leukemia is returning or not.

The second option is a relatively new procedure called a haploidentical transplant.  In this case, the donor is a half match to the recipient (for instance a 5 out of 10 match).  Interest in this type of transplant is increasing because many people (like Kevin) do not have viable full-match donors.  Most people have at least one haplo donor in their lives, either their parents, children, or siblings.  Kevin is lucky enough to have 4 siblings that are haplo matches, Greg, Denise, Wayne, and Keith.  Right now, it looks like Keith and Wayne are the best matches, but they will need further blood testing to see who's the best.  Anyone willing to wager??

The preparatory regimen and drugs associated with this procedure are quite different than a typical transplant and research in recent years has made the procedure much safer.  Because the regimen tends to be less intense, much of the treatment can be done on an outpatient basis. This is a relatively new, experimental procedure and, as such, we will have to travel to Johns Hopkins Hospital in Baltimore for treatment, if this is the path we choose.  There are only hundreds of people in this country who have had this procedure, but Johns Hopkins is having excellent results, in the words of Dr. Strair.  I was able to get Kevin an appointment there next Thursday, when I am sure we will learn much more. 

Our goal is to proceed as rapidly as possible, hopefully rescheduling with 2 weeks.  The logistics of a possible haplo transplant are more complicated, as Kevin will need to be in Baltimore for about 3 months! We've heard many good things about Johns Hopkins and are anxious to learn more.  

Alas, my dreams of female blood for my husband may have ended.  All the cards and flowers out the window...replaced with my brother-in-law's blood!  What did I do to deserve this??!!

As I said in my email, I will be updating this blog in lieu of email updates from now on.  I will post whenever I have new information (hopefully a few times a week), for anyone interested in the details of our journey.  Thanks for reading.