Sue Charen

Third Time's a Charm?

News: a third donor has agreed to give a bone marrow donation. We must still wait to find out if the person is healthy enough to be a donor, but a time has been set assuming that everything goes well. Sue will go to the hospital May 8th for preparatory chemo which is even sooner than the would have been with the 2nd potential donor.

Again thanks so much for the leave donations. It has made this very difficult time easier. Every time the we go to the pharmacy for all of the drugs she requires and goes for the endless blood tests, biopsies, MRI's, doctor visits,.... let's just say it has been a overwhelming feeling of gratitude for all the help all of you have all been, with cards, calls, visits, leave, help with chores, companionship, prayers, wishes and love.

Rollercoaster

Well, this last week has been a rollercoaster of news. Sue continues to do very well. However, the second donor is "medically incapable" of giving bone marrow and will instead give peripheral stem cells. Also, the schedule slipped to mid-May. The doctors are trying to move it up, but this is likely to be the way it goes: May 13th Sue gets admitted for the preparatory chemo and May 19-20th the donor contributes stem cells. The main issue is to get the bone marrow transplant before there is a relapse of the leukemia. Sue just had a bone marrow biopsy that showed no leukemia at the cellular level (still waiting on the molecular test). But time is of the essence since Sue is now strong enough to endure the transplant.

At a class for patients and caregivers that we had at Johns Hopkins it was clear that waiting and having changes in schedules is par for the course. Also, we have heard from Sue's office that some generous people have helped with some of the leave donations that are helping Sue at this trying time. Thanks.

We had a nice weekend (thanks to the weather) with Sue's brother from Chicago. "Hi Andy" ;-)

Positive News

And so the call from the bone marrow coordinator from Hopkins was positive: the second matched potential donor agreed to a bone marrow donation. There will still have to be preliminary testing by both Sue and the donor (we will be going to Hopkins several days for these tests). And the transplant donation has been scheduled for May 3rd. Sue will go into the hospital for the chemo treatments on April 27th. She will get the donation on the 3rd or 4th. Then there will be a month of monitoring while the transplant engrafts. After that Sue will have to go to the hospital for a month or two for close monitoring for infections and GVHD (graft versus host disease).

Two types of Two Types of Donations

Sue found out that her first matched potential donor is only willing to give a peripheral stem cell donation as opposed to a bone marrow donation. Since Hopkins prefers bone marrow transplants, the second match is being contacted for a potential donation of bone marrow for the transplant. This is delaying the transplant by a week or two. If the second match can not be used for any reason, we will go with the first.

Differences between the two types of "stem cell" donations (bone marrow donation also is a stem cell donation) in terms of the donor are that the bone marrow donation causes some discomfort during and for a short time after the procedure and is a little bit more invasive procedure, though the peripheral stem cell donation takes more time. For the recipient, the differences are that the bone marrow engraftment normally longer with actual bone marrow, but the incidence of graft versus host disease is probably higher with the peripheral stem cell transplant. Any difference of overall long term prospects are unclear.

There is another donation that Sue is looking for: federal leave time donation. Her coworkers and other helped greatly last year during the long chemo sessions and major recovery. Thanks. Now Sue is about to go in for the transplant, a very long and serious procedure that will sideline her for three months (essentially a bone marrow transplant is chemotherapy so severe that it kills the bone marrow, and then the donated marrow/stem cells replace it). Unfortunately, this is the only known possible cure for the form of leukemia Sue has along with taking Gleevec pills for the foreseeable future. The leave donations will help ensure that Sue remains covered by health insurance and receive other benefits while she recovers well enough to return full time. There are two types of leave time that can be donated, "use or lose" or just regular leave. There are rules that must be followed in terms of leave donation, so if you can donate, you will need to run the form through your agency's leave system prior to sending it to EPA.  If possible, we would appreciate it if you could also fax your form to our office (202-566-0870).

Thanks again to all that signed up to be potential marrow donors, federal workers who donated leave and everyone else who has been so helpful during this difficult time for Sue.

Passed Over many days

Yes, it has been awhile since the last post. There has been no real new news. Sue continues to improve everyday, walking more and more steadily, going out for meals once and awhile, hair growing back in...

There is no set day for the transplant, but it could be as soon as next week. We are just waiting to hear back on the test results and scheduling.

We had a very nice Seder with my aunt and uncle and cousins in Bethesda. We also drove through the Kenwood neighborhood, a major jewel for cherry blossoms in Washington (some say it rivals the Tidal Basin).

So, we have places to stay in Baltimore for the next few months. We will move up there as soon as Sue goes into the hospital. I have a new cell phone number, so please email requests for it if you want (daniel @ citizencontact.com -- delete the spaces to make this an email address).

Thanks again for all the help and love you all have given. The transplant and recovery will entail asking for more help to get through this difficult process. Thanks very much in advance.