I have options

Good news first. Harriet's bone marrow tests and all of her blood tests came back just fine. The primary reason for her bone marrow biopsy was to ensure that she did not have the same condition as Samson. No one knows whether this could be a familial condition that our other biological children could have inherited. But Harriet doesn't have it, which means she is healthy and she can be Samson's donor. Also, because she came out pretty well on the marrow sampling (toys, flowers, lots of drama), she seems to be pretty fired up for the actual harvest.

Also the Democrats finally earned the votes I kept giving them and passed the health care bill. Which for lots of people brings about abstract feelings of happy (it won't just be fortunate people who get to go to the doctor) or sad (it won't just be fortunate people who get to go to the doctor), but for us is some concrete reassurance that our health insurance policy probably won't hit the maximum and just end while Samson is in the ICU racking up gazillion dollar daily bills. And if the whole country has to pitch in to make that happen, well, I'm grateful for the contribution.

And really there is no new bad news, just bad thinking about old news. Our week began with with Samson's CT scans on Monday. He did fine with the sedation and we went home right afterwards. The scans did not raise any alarms, and at our appointment with the infectious diseases doctor, Dawn Nolt, on Wednesday, Samson was cleared for transplant, pending another bronchoscopy for a final lung check next week. I also met with Samson's surgeon, Dr. Garrett Zallen, on Thursday, to discuss the central line that he will place in Samson's chest next week. There are some major, but rare, risks associated with that surgery that would have scared the pants off of me in more innocent days. Nothing, really, for a daredevil like Samson.

It is the more viable threat to Samson's life, and quality of life, that occupied me this week and had me questioning whether transplant is the right thing to do. I had been going along as if I had no choice but transplant, and channelling all my energy into moving that forward, even as I learned more about how bad transplant will be. According to Dr. Nemecek, Samson has only about a fifty percent chance of even surviving this transplant process, given how poorly his lungs are now functioning and how vulnerable he is to infection. And after fighting to survive this thing, the long term effects for him may be enormous.

Meanwhile, we have him on these antibiotics and antifungals and he is doing great. Happy, alive, growing. I began to feel very sorry for myself, for him, for us, that we had to do this awful thing so soon. Adding to my misery, to my sense of myself as the condemned man, was my feeling that I had no choice -- that I had to do this terrible thing.

But that was wrong, and I began to feel better even as I recognized that no, I am not forced, I choose for my son -- and I need to choose wisely. So I spent some time sorting through our options. I laugh that I am going to quote my mother here, but I have to give credit. From when I was a child, her most favorite piece of wisdom was this: you have options. I used to make fun of her because she always said that, so cryptic, so really not that helpful. But, truly, it is a powerful mantra; it puts you in the driver's seat. All kinds of miserable stuff can be happening to you, but if you say to yourself, I have options, well then, look who's running this show.

Anyway, I have options. One of them is transplant, and the other is not transplanting. There are two threats to Samson. First, the MDS morphing into acute myeloid leukemia, at some point, probably fairly soon but maybe in a few years. Second, the threat of infection because he has no neutrophils, the cells that fight infection.

I start with the infection piece because it feels more real. Dr. Nemecek told me that even a 50 percent survival rate with transplant is worth it, because she believes he will die of infection within a year without transplant. She is very blunt. Infectious diseases people agree. He will run into resistant bacteria or a fungal infection that antibiotics cannot fight alone. It is a matter of time, they say, and he is lucky it hasn't happened yet.

The leukemia part is sketchy. When? Dr. Stork, our oncologist, had a conference call with us last night and was helpful on this point. She was very open that we do not know when the leukemia will come, but she says it will. She affirmed, strongly, that it is my choice whether to transplant, and she validated our desire to spend time with our son outside of the hospital, to enjoy him. But, she said, if we do not transplant, we need to accept that Samson will die of leukemia; we cannot delay transplant to enjoy our time together with the notion that we would just beat the leukemia later. When I asked really what that meant, she explained that Samson would have to undergo intensive chemotherapy to get the leukemia into remission to be right back where we are now, getting a BMT to cure him. She estimated that we would have something like a 20 percent chance of even getting to this point -- clearing him for transplant -- and our chances at transplant would be far worse.

So, back to where I was, but not exactly. Today, I do not choose to wait for the fatal infection. Nor do I choose to accept that Samson will die of leukemia. Of my options, I choose transplant. I don't feel good about the statistics, but I do feel relieved to be at the steering wheel again.

Next week, if I so choose, we will be at the hematology/oncology clinic bright and early Monday morning for an IV immune globulin infusion, which will take several hours. We will have meetings with Dr. Nemecek to finalize transplant plans and prognosis, and with the Bridges team, which is supposed to help us in our decision making while we have a very ill child. I am not sure exactly what that means. I wonder if they will tell me I have options.