Close Enough for Horseshoes But We Need a Ringer

On a date like 1-11-11 we had hoped for good luck and good news.  Dr. Porter came into the examination room with a serious face.  This might not be unusual for an oncologist but we were hoping to see some cartwheels or something.  The news was mixed.  Dr. Porter said Jeff’s blood counts are “fantastic.”  Unfortunately, none of Jeff’s siblings are a close match.  Debbie and Greg match each other but not Jeff.  (Hopefully, that fact will never be anything more than an interesting factoid.)  Paul is better than a 50% match but not as close a match as Dr. Porter would like.  It would be adequate if nothing closer can be found.  Dr. Porter said, “Don’t be mean to your brother yet.”  Jeff’s blood sample from last month’s draw for the HLA typing is being tested further so that he can be entered into the bone marrow registry.  In the meantime, Jeff will continue on Vidaza for at least one more cycle – and maybe two or three - while the search goes on. He’ll have another biopsy in mid-February. 

Dr. Porter sometimes holds back while he gauges our understanding and reaction to things.  Today he drew us out to find out whether we had thought about the low-intensity transplant.  When we told him Jeff’s preference was to do the conventional transplant if it meant a better chance of doing it only once with possibly better results, Dr. Porter said the conventional transplant would be what he would recommend in Jeff’s case.  He said Jeff is in a gray area for recommended treatment.  He would have a different recommendation for a 40-year-old than a 65-year-old but Jeff falls in-between.  When we asked about a second transplant, if it became necessary (for example, if a low-intensity transplant didn’t work well), he said that a second transplant would be “extraordinary” and you would not want to plan for a second transplant.

We asked about Jefferson’s work with 50% matches and whether that is something we should look at.  He said a conventional transplant with Paul as a donor would still be better than what Jefferson is doing, trying to make it safer to use marrow with only a 50% match.

We discussed what would be involved for the donor.  If Paul donates, the harvesting would be done at Penn and may or may not require an overnight stay.  If the donor is in Japan, California or Timbuktu, it would be harvested where the donor lives.  The donor’s identity would be kept confidential for a year after which time the donor and recipient can learn each others’ identities.   Only one staff member knows the source of the bone marrow donors; no one else is allowed to know.  Jeff mused, “It’s just blood.  I don’t think I would need to know the donor.”  Amy pointed out that some people on are the registry for years and years and are never called so when they are called it must be a pretty big deal to them.  Plus, it would be a life-saving big deal for Jeff.  Amy would want to know.  Jeff would not.  Stay tuned…   

Jeff mentioned that people have asked about having their bone marrow tested and he asked Dr. Porter for advice on what to tell them.  He said that although it is unlikely that they could help Jeff, it is probably worth encouraging them to register at www.marrow.org.  Of course, they would have to be willing to help anyone who might be a match.

Oh, and sadly, Dr. Porter’s cute resident was not present today.  We were all disappointed, Kim particularly.  Maybe next time.

Prayers, please, for a match and continued good blood counts.  And please leave comments here or send us emails.  Your messages help.