It was almost three years ago that my son had a blood clot in his leg that was later diagnosed as resulting from a relapse in the leukemia he had suffered as a child. It’s been a hell of a ride since. But now the page is turning. While I don’t believe that there is any such a thing as closure—life is a stream, not a lake, with every fleeting moment carrying the memory of all that has come before and all that will be, just like the water coursing relentlessly downhill carries within it the memory of its ceaseless cycling—it nonetheless seems time to close this chapter and float on down to whatever awaits behind the next river’s bend.
My son is doing well now, almost normal, and certainly as normal as could be hoped for anyone who had endured two bone marrow transplants. His condition has improved immeasurably just in the last two months, as the graft versus host disease (GVHD, a condition where the new bone marrow attacks the host body as non-self) has subsided, and is all but gone. For the last two years, he had been battling the effects of GVHD, which is expressed as something like an autoimmune disease (e.g., lupus, rheumatoid arthritis, etc.) would manifest in regulars folks, that is, in people who had not traded their natal immune systems for that of an unrelated donor.
The GVHD disappeared as mysteriously as it had arisen. After a particularly nasty infection, one that had required a doctor’s visit and a round of antibiotics, and during which we had stopped administering the immunosuppressants which were keeping the GVHD at bay in order that he might mount a more efficacious response to the infection, the GVHD never came back. We had decided to keep him off the immune suppressing drugs for a while after the infection, to see what might obtain. He’s not needed them since. He’s gained about ten pounds—something the GVHD never would have allowed—and all the systems that might otherwise have been affected by a recurrence of GVHD (liver, kidneys, gastro, etc.) are quiescently humming along.
He graduated high school in May, managing somehow to graduate with his original class, though high school will surely always have a bittersweet feel for him. He was never able to really be the young man he’d set his sights on being after his freshman year. The disease struck early in his sophomore year, and from there, everything was a struggle just to survive, never mind any hope of actualizing his potential. He plans to attend Auburn University in the fall. (Werr, EAGle, y’all!). In the meantime, he’s had the best summer of his life. He’s been a counselor at a church camp where, between tending to kid’s skinned knees and such, he’s been able to play a little basketball in the church gym. He came home so excited today, bragging on the seven buckets he made in a pickup game. I can see where this is huge for a kid like him. He still only weighs about a hundred pounds (even with the ten he’s gained in the last two months), but he finally feels good enough to want to be physically active and competitive. Honestly, I never figured three years ago that a day like this would come to pass.
I have been his primary caregiver for this last transplant. The first one fell to the wife. We knew going in that there was no way for both of us to work and care for a bone marrow transplant patient. The wife had been forced to quit her job the first time. This time, it fell to me, which wasn’t so bad really, because I was already so burned out on real estate closings, having personally conducted six thousand or so in the previous ten years, that I was glad for the break.
I learned through the course of the transplant that much of what I had suspected about the first time was true: The transplant doctors were generally clueless, not much more than glorified automatons, and that’s only when they did their jobs properly. I lost what little faith and trust I may have had vested in them about a month into the transplant when they let my son bleed for nearly twelve hours because they claimed to have not had any platelets available for transfusing. I had done quite a bit of research and study on leukemia and bone marrow transplants in the eight years between his two transplants, and I had learned by then that transfusing platelets was mandatory for anyone with less than 10,000, and especially for anyone actively bleeding. How could I have had confidence in anyone that couldn’t get the little stuff right? No football team that can’t block and tackle can expect to win many games. No transplant team that doesn’t infuse platelets for a bleeding kid whose labs show him to be well below 10,000 can be trusted to do much else right. They used the excuse that none were available. My response was that any reasonably competent monkey could have anticipated the need for platelets, and should have planned accordingly, including requesting family and friends make a platelet donation for the kid’s benefit if need be.
My takeaway from the experience was that quite a bit of incompetence is overlooked these days under the guise of “saving children’s lives”, especially when the doctors expect that no one but them knows whether or not they are doing their jobs. Unfortunately for the transplant team, I knew, through research and experience, what it meant to properly do the job of a transplant doctor. And I demanded that they do their jobs. They hated me, but I make no apologies. Had they done their jobs, I would not have ripped them a new asshole every other day. (Note to readers: leave me a message with your e-mail address if you’re child needs a bone marrow transplant, and I’ll let you know where not to go. The transplant team where my son received both of his is exemplary for how not to practice medicine, and especially, of how not to do bone marrow transplants.)
Though I felt I had already grown in wisdom (resulting simply from experience, and from the autodidactic journey upon which I had tarried) since the first transplant, I learned a great deal more by dint of the relapse. Through the treatment ordeal I gained an understanding for what God is and isn’t. I logically deduced that any entity or being that is omniscient, omnipresent and omnipotent is necessarily the cause of everything that happens, including leukemia. God caused my son’s leukemia, just like God caused his bladder to bleed for several months post-transplant, just like God caused the GVHD, just like God also caused the bleeding and the GVHD to mysteriously disappear. There is no way human beings will ever understand, with our finite minds, the infinity that is God. Which is why I never quite understood the prayers people offered, telling God they wanted this or that outcome for my son. How utterly vain and hubristic to imagine that a mere human might command, through prayer, a being infinite in knowledge, power and presence, like God, to act. God will do what God will do. Humans have only to accept God’s will and make the best of it.
This blog has been my outlet, my way of communicating things I’ve learned along the way of searching for truths about human beings and the universe in which we live. In large measure, I owe the blog to my son’s two bouts with leukemia. Before the leukemia, I was barreling down well-worn tracks leading to what is supposed as the American Dream. After the leukemia, I realized what an exercise in banal temporalities the whole things was, and refocused my energies on things that I could love without the fear of losing. I focused my love on discovering objective, dispassionate truth. I sometimes try to have fun with it, but the purpose is always the same—to understand things as they are, and not how selfishly biased humans would wish them to be.
I appreciate your taking the time to partake of my thoughts, and encourage you to make comments as you feel are appropriate. The blog continues. The transplant appears to be over.