[Lisa V]

Paula, the article in your link is very interesting and has more information than any of us can provide. Each of us only knows how we or our loved one is doing, and that is the most important thing after all.

Of course most of us do want to know what lies ahead, and the only way to get any idea of that is to read the statistics. A few things to keep in mind when reading something like that, however: first, it is a limited study. All of the conclusions made were based on a specific group of only 122 patients. A different group might produce different statistics. Second: in order to be able to cite any figures for long-term survival, patients must be followed over the course of several years, which means that by the time those survival figures are recorded they are already obsolete because medical procedures continue to evolve and hopefully, improve. How can we know the odds of someone receiving ATG surviving for another 30 or 40 years, when the procedure itself hasn't even been in use for that long? We have heard from a few people on this or other forums who had ATG at least 20 years ago and are still here, so I find that encouraging.

Another thing to keep in mind is that Aplastic Anemia is not a single homogeneous disorder, but a group of symptoms. Each case is unique and has its own peculiarities, so what is true for one person may not be true for another. Seen in this context, statistics are just a record of what has happened, not a predictor of what will happen. Of course we have to use them to determine which drug protocol is likely to be most effective, etc. but the most important factor is always your own experience.

When Ken was first diagnosed and treated I spent a lot of time reading articles and studies and looking for answers. I had to come to terms with the fact that he could die from this, and try to prepare myself for it. At some point, however, it became clear that he wasn't actually dying, but managing his illness and living his life. I choose to focus on that now. I don't ever forget, but we will cross that bridge when we get there, and we're not there yet!