The Bone Marrow Matchmaker

December 7, 2010

Kim, Jeff and I visited Dr. Porter’s office at the University of Pennsylvania today.  While sitting in the waiting room, Jeff noticed a feeble old man being wheeled towards the examination rooms in a wheelchair.  Later he came out pushing the wheelchair.  Jeff took that as a good sign!

When it was Jeff’s turn, we were led down a long hallway to an exam room.  We all noticed right away that Dr. Porter’s resident, Brett, is ever so cute!  Brett took some history and attempted to determine what we understood about MDS and to learn what we had already been told about why we were there – a bone marrow transplant.  When Brett asked about Jeff’s mood, what a joy it was to give him high, high marks for attitude!  He noted all of those things – and the evidence of a good support system - on the computer for Dr. Porter and answered some of our questions; others he deferred to Dr. Porter.  Then he went down the hall to discuss Jeff’s case with Dr. Porter.  Dr. Porter was already familiar, having consulted with Dr. Kennedy to determine a treatment plan. 

While the three of us we were waiting in the exam room, Jeff brought up his hair which so far has not shown any sign of thinning as a result of the Vidaza treatment.  He recalled that his children said they would shave their heads if he should lose his hair.  I looked over at Kim, with her gorgeous long locks, and said, “Oh!  I didn’t know Kim offered to shave her head!”  Kim said, “Neither did I!”  We all laughed, just as Brett returned with Dr. Porter.  Dr. Porter said something about our having fun, shook all of our hands and prepared to get down to business.

His demeanor was very, very serious.  He took his time explaining the disease, the prognosis if left untreated (a year or less; Thank God for poison ivy.) or if treated with Vidaza (six months or six years depending on Jeff’s response to the drug) and transplant (if he survives the treatment, he might be expected to live another 40 years).

The transplant is, of course, the only good option.  It is very, very risky business.  During the first week in the hospital, high doses of chemo and radiation would be given to kill all his bone marrow cells – good and bad.  This process could potentially harm organs: heart, lungs, liver, kidney.  Then the transplant would be given and Jeff would be monitored for infection and Graft vs. Host disease (for which there are good treatments).  It would be another four weeks or so in the hospital and would take another year before he would feel normal.  Dr. Porter said to think of it as one lousy year followed, hopefully, by another 40 good ones.

The possibility of a mini-transplant (reduced intensity is another one of its many names) was discussed.  The advantage would be that less chemo and radiation would be given, possibly sparing the organs.  There is no good data yet on whether this treatment is any more or less successful than the traditional transplant.  MDS could recur.  

Dr. Porter seemed to want to do the transplant sooner rather than later, testing Jeff's bone marrow after four months of treatment (not six months as the Vidaza literature says is typical).

Jeff wanted to know whether he would have to see his family and friends through a glass wall while in the hospital.  Dr. Porter assured him, “No.  Unless there is someone you don’t like.”  He said we will have to wear gowns and masks. 

Jeff had blood drawn for his HLA typing.  We were given the number for Maria who will arrange Paul’s, Debbie’s and Greg’s HLA tests.  Pray for a match!  Thank God for siblings willing to fight their aversions to needles for the cause!