Posted by Tyler If you're wondering why I didn't post how many days I'm into Project Don't Die this time, it's because I think it's kind of irrelevant right now. It was actually a count of the days since the transplant, but that only really means anything if those days are cancer-free, so as soon as I'm in remission again, I'll restart the count. Project Don't Die, however, is still in full swing. Speaking of being in remission, I think I'm headed that way. It might just depend on how you define it. Before my second Myelotarg treatment, the doctors performed a bone marrow biopsy (#18) which showed a reduced number of blast cells (3% down from 8%) as well as a more promising ratio of Vanessa's cells to mine in the marrow (95:5 up from 85:15). So technically, I'm in remission from the leukemia, but I'm waiting for the 100% Vanessa marrow count until I claim that I'm in remission. The results from the biopsy do suggest that the Myelotarg is working, and because my liver handled the low dose of the first infusion just fine, we went ahead and did the second dose about a week-and-a-half ago. I got a fever again about 2 hours after the infusion but was able to stay out of the hospital, so that was very nice. I did not want to go back in there. I had just been taken to the ER and admitted for two days the previous week having caught a couple viruses that attacked my intestines pretty agressively. The positive side of all of that was I found out that I could return to a regular diet because the acute GVHD in my intestines had burned out for the most part. Back to the Myelotarg: I met with my doctor on Thursday and we talked about what lies ahead. Another higher dose infusion of Myelotarg is more than likely in the future as well as another bone marrow biopsy in 3 weeks or so to see how things are progressing. The doc reiterated that the Myelotarg itself is not curative, but will help in fighting back the "bad cells" to a point where Vanessa's cells can keep them at bay. If the next bone marrow biopsy is favorable, then we'll probably move ahead with the Myelotarg, and if it's not favorable, we'd more than likely do the Myelotarg anyway just "to buy time" as the doctor so tactfully put it. Medicine has pretty much exhausted its resources at this point, but I have been looking into detox centers and other holistic approaches that have had some great results in terminal cancer patients. Meanwhile, my blood counts have been holding their own for the most part. I've only been needing platelet transfusions, and those about twice a week which is a bit much. The idea is that they will recover from the Myelotarg in about 3 weeks along with the rest of my counts. I'm thankful that I haven't been needing red cell transfusions as they take a long time, something I don't have a bunch of with working on my classes and finishing up for graduation. As far as the documentary is concerned: Uncertain Tomorrow was screened on Monday in Anderson, IN during AU's Vision Revision week. There was a turnout of around 175 people which was overwhelming and it was followed by a great Q&A. I've also just sent a copy out to a prospective distributor and one to the PBS affiliate in Marquette, MI to preview. I'm waiting to hear back from them still, and I will post any news I find out. There may be some very exciting developments on the horizon. Finally, people ask me sometimes how I'm doing with everything, and I'll be very honest. It's difficult coming out of clinic appointments where the doctors just aren't very optimistic and not feel defeated, and waking up mornings with no energy, realizing that I can't leave the house and that basically all I can do is work on school stuff. Lately it has been tough, and I've grown somewhat lethargic and indifferent, however I'm encouraged everywhere I turn: phone calls, prayers, e-mails. Also, as the weather is turning nice and I've been able to stay out of the hospital, I'm working on getting some exercise which definitely drives out the cabin fever. I'm very much looking forward to when my counts come up again and I can break out of isolation, but I am still learning quite a bit during this time. For those of you who are praying for me and want something specific, pray that I get some energy and enthusiasm. For now, that's all I've got. I'll post again when I have news. Until then, Tyler
on 4/5/2003, 4:00 pm
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Hey everyone,
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