Dispatches from TransplantLand: Day +13 (BItter with the Sweet)

Note: Somehow an incomplete version of this post ended up being published, and has now been deleted. This is the correct version of Day 13

Today Beth's white count was up to 7.0, which is well within normal range. We waited around a pretty long time for the results. The Nurse Practitioner finally got around to making her "visit" to us, to say that Beth would not receive a shot of Neupogen today. The clock starts ticking. She then proceeded to tell us that if things continued going well, maybe we'd have a "break" from daily clinic appointments over the weekend. The weekend? THE WEEKEND? We had been told by the Physician's Assistant, who had a day off, that an absolute neutrophil count over 500 and two days without Neupogen or any blood products would be the criteria for discharge. By our calculations, that would be Thursday. When we questioned her about her timetable, she backed off a bit, saying leaving earlier than the weekend was a "possibility." The only thing we can figure is that she's being deliberately pessimistic in order to keep us from getting our hopes up. I can understand that, however, it is necessary for us to have some realistic information in order to make plans. Beth's house is being cleaned, dog boarded, she has to arrange a ride home, etc. People need to know what's going on. For the meantime, we are basing everything on our Thursday-Friday scenario. We think it will be Thursday, Friday at the latest, and we have contingencies for either day.

The clinic has two treatment rooms--A and B. I decided to walk around the two rooms and assess the capacity. Room B has 7 free-standing chairs around the perimeter and 8 small separate rooms with doors. Room A has roughly the same, only maybe fewer separate rooms. That leads me to guess they can accommodate somewhere in the neighborhood of 25-30 transplant patients at a time. There is the appearance of a futuristic assembly line--patients in vinyl recliners, most connected by tubes to intravenous solutions of various contents. Many have friends or family sitting in the small metal chairs at right angles to their recliners, peering into the screens of their laptops or talking loudly on their cell phones. Many of the patients are sleeping, or in that half-sleep drowsy state that helps them conserve their meager supply of energy.

We get to know the other patients and caregivers a little, some more than others. As I was walking through the two treatment rooms to do an unofficial inventory, I saw one woman that we've talked to over the past couple of weeks. Her name is Joyce and she's from Charlotte. The past few days she hasn't been doing so well. She's had trouble with her kidneys. I asked her how she was doing and she told me she was going home today, but the expression on her face wasn't happy. The transplant of her son's non-matching stem cells didn't take. She would have to go home and recover, only to travel back to Duke in about four months to try it all over again. I felt like crying, but I didn't think it would help her to see how sad I was for her. She didn't know why the plan was to use her son's stem cells again, when it hadn't worked the first time, and it didn't make sense to me either. I wondered if it had to do with the fact that she is African American and that minorities are underrepresented in the marrow and stem cell donor banks. Maybe there just wasn't a better match to be had in the sparse listings of the registry. I urged her and her husband to go back home and talk to everybody they know about getting their blood tested to see if they might match with somebody in need. Maybe they could encourage their church or other community groups to have a drive to get more people into the registries. It could be that in 5 or 10 years there will be some way to genetically engineer stem cells so that everybody who needs a transplant will have as successful an experience as Beth has had. In the meantime, many people will need donors. Donating stem cells involves being hooked up to a machine for a few hours and having your blood circulate through it and back into your body. It's not painful and it might save somebody's life.

More information is available at the website of the National Marrow Donor Program.