I decided to leave this blog “as is” after Ben celebrated his first year’s anniversary post-treatment – a record of his leukemia experience with a hopeful ending. But this chapter of “The Rest of the Story” tempts me! I think I would have liked to have found it 3 ½ years ago at the beginning of Ben’s battle when, in a state of wide-eyed hope and dread, I spent many sleepless hours in front of the computer screen googling “teen leukemia survivor,” “leukemia soccer,” “t-cell leukemia adolescence…” So few hopeful sites came up. The kids and families I did find, I clung to for the duration.
Ben is 21 today! An official adult on all fronts, he made it through all the regular scary trials of teenager-hood – and then some. Very soon after his diagnosis, I remember a late night talking about "rite of passage" as an analogy for what he was going through. I told him stories of cultures that have rituals where young men face danger and deprivation and their own fear as part of a journey toward manhood – and that for some reason it looked like this was going to be his path too. I imagine he fell asleep in the middle of it. - a good bedtime story anyway.
Nearly four years later, lying awake last night basking in the wonder of Ben being 21, the analogy came back to me. Ben went through absolute hell during treatment, unimaginable to either of us early on, and then he finished up only to face the wilderness of painkiller addiction and avascular necrosis . His journey has been absolutely torturous at times; to say it was two steps forward and one step backwards seems Pollyanna-ish. It was simply hellish. And the fact that it didn’t end on the end-of-treatment date that is branded on every parent’s brain made us sometimes despair.
It was really helpful to me to be in touch with other parents whose teenagers were going through similar post-treatment issues: private emotional stuff that bordered on or became full-blown clinical depression or anxiety, self-destructive behaviors, even attempted suicide for one of the young men.They were a huge support for me in navigating this unforeseen territory. Ben’s guides and wisdom figures—seeming providentially placed along the path to encourage him and point him in the right direction—were an extraordinarily diverse bunch including (but not limited to) the Gator basketball team, a group of rag-tag fellow-addicts, an uncle he never knew, and a counselor who became a friend. They wielded their magical powers like shamans, wizards and angels in Ben's saga. They pointed the way home.
Certainly Ben has many years of journeying left on his “quest for manhood.” But he seems finally out of this particular woods. Since my last post, Ben finished up his second semester at school – 15 hours of classes with straight A’s – another totally unforeseen event (Ben had never, throughout his school history, come close to this), and a huge “in-your-face” to all the cranial radiation and spinal chemo he endured. He doesn't play team soccer, but he shoots hoops with friends, rides his bike all over town, wrestles with his nephew, stays as active as any young man his age. He takes his heart meds on his own (moms of teenagers, you know what I’m sayin’), usually keeps his appointments, has learned to talk with doctors and other healthcare professionals man to man/woman. Lately, he seems to have grown in leaps toward responsibility and integrity. That man Ben is becoming is in sight, and he looks good. I can’t imagine a better Mother’s Day present than Ben at 21.
