Sue Charen

Another Week

The now weekly visit to the hospital went very smoothly. Sue's labs were good, the GVHD assessment was great, and the oncologist started talking about the next stage of treatment. That stage will involve going back onto Gleevec and the lumbar puncture chemo and maintenance supplements.

Sue continues to work a couple hours a day or so during the week. Her appetite which has gone from nothing to ninety is back to normal. And the doctors have allowed her to have more foods like salads at home. Sue is napping for at least a couple hours in the afternoon, but she is generally more energetic and walking better.

Flu Shot

Sue did not quite get through a third time without needing anything, but she is doing very well. She needed some red blood and was a little low on some things. The GVHD team was very happy with her continued improvement. Sue is also doing much more walking on her own with no assistance. And she even started to do some work from home.

And I got a flu shot. Caregivers of people who are immuno-suppressed are supposed to get flu shots. Sue has little resistance and a flu shot would probably have no effect as her immune system is too immature to create the anti-bodies. So it would be very helpful if anyone visiting her this fall and winter gets a flu shot (or stays away if they feel like they might have anything at all). A flu shot, and not a flu misting (the nasal spray). If for some reason you do get the flu mist which uses live viruses, you must stay away from Sue until at least three weeks after.

2nd Time in a Row

Today we went to Johns Hopkins for the twice weekly set of labs. And for the second time in a row, Sue did not need anything by IV at the hospital. At home Sue is getting a liter a day of IV hydration and various supplements but seems to be doing good on that. If this Friday she does a three-peat, she may be able to only go once a week.

Sue has been doing very well. She is starting to walk outside with very little assistance. Her hair is coming back. Her appetite is good and she generally feels good. She is still weak and needs to rest, but that is expected and may last for sometime. As the steroid dosage continue decreasing, she may even feel a bit more tired.

We are finally getting settled into the apartment.  I realized it was a five days since the last post, but really there hasn't been much "news," which is a good thing.

Quiet Days

We have had three quiet days here in DC. Not much happened. Sue feels good. Tomorrow we see Sue's doctors.

And Back to DC

Fortunately, Sue has been fever free for forty-eight hours. So this morning the doctors confirmed that Sue could go home. Sue was actually feeling pretty good except for last Tuesday when she had a great deal of knee pain. But after a bone marrow transplant and when taking drugs for GVHD (Graft Versus Host Disease), being infected can be very dangerous and doctors are very cautious.

Now we are back in town and don't have to go back to Baltimore until Friday. So we can finally unpack.

Bumpy Road Back to Baltimore

Well, it has been a hectic few days. On Monday Sue came to the conference where I was speaking (thoroughly masked and with a buffer around her). On Tuesday Sue developed a high fever and horrible pain in her knees. We nearly went to the hospital, but we waited and the fever went down and the pain disappeared. On Wednesday we went in to the hospital, but Sue was feeling well. However the next morning the fever came back. At this point the doctor asked for Sue to come in immediately and that she would be admitted to a hospital room.

Sue has been in the room, getting lots of tests. So far all of the tests show no signs of infection though it is clear she has one. That may mean that it is viral. Sue will continue to be tested though. She will probably stay through the weekend. Sue is feeling very well, but doctors consider infections to be potentially dangerous and act very conservatively. So back to Baltimore for a few days.

Back in the DC of US

For the first time in over four months Sue was in DC. We arrived yesterday afternoon with some help from friends. So it has been a busy weekend with the birthday on Friday and friends visiting and a big move back to DC. It may take a while to settle and unpack, but Sue seemed very happy to be in the apartment and back in the neighborhood.

We will have to be back twice a week for lab work and GVHD assessments. Right now it will probably stay Tuesdays and Fridays for awhile. As Sue improves it will drop to once a week and by six months out even less.

Thanks for cards and birthday greetings and for help with the move.