A Son's Illness, A Family's Journey

Looking back, it seems preposterous that we didn't catch it sooner. The day before, my 5-year-old, Peter, and I were at our local park playing baseball before dinner. As the early evening sunshine filtered through a sieve of pine trees, and the neighbor's dog yearned to crash through his reinforced picket fence, Peter was bruised and weepy. Each swing that didn't meet the ball met tears instead. The smell of dehydrating alder leaves reminded me it was fall. Kindergarten had begun, and I concluded Peter was overtired from the transition to being at school all day. Walking back, Peter stumbled and fell. I carried him home for dinner. He didn't eat.

On Wednesday, Sept. 27, 2000, Peter was diagnosed with high-risk leukemia, and a bomb was dropped into the middle of our perfect little life. The shock wave spread outward through family and friends, leaving unstable foundations in its wake. Peter had developed a cancer of the white blood cells normally responsible for keeping him healthy and free from attack. A stratospheric white blood-cell count earned the high-risk designation. The consuming mass in Peter's chest and the assault on his blood system meant precious little oxygen was finding its way in. Our little boy was critically ill. We were plunged into a darkness fueled by fear, uncertainty and doubt. The smells of a northwest summer were eclipsed by antiseptic hand soap and alcohol swabs.

According to statistics, Peter's prognosis was good. All he had to do was survive the treatment.  My wife and I, immersed in unintelligible medical terminology and despair, moved into the hospital. We left Peter's 3-year-old brother and abruptly weaned 10-month-old sister at home with Grandma. At the hospital, doctors designed a course of treatment. The first phase, called induction, used chemotherapy to break up and slough off the ponderous tumor in Peter's chest. The assault on Peter's pathways from this sloughing was massive. He suffered chronic nausea, with persistent pains in his back and hip. We were drained by the process. Our medical team applied their creativity and vast experience to managing the fallout during this first phase.

The induction phase worked. Through the hospital-room window I watched the mornings turn crisp like the skin on the back of my hands from incessant washing. The maple leaves shimmered golden as Halloween approached. The tumor was gone. The treatment had destroyed all Peter's neutrophils, the white blood cells produced by his bone marrow, leaving him with no immune system whatsoever, but he had survived induction. He also had a central line running from his posterior aorta out through his chest, dangling freely just below his left breast. The procedure to place his central line had consumed two of the longest, loneliest hours imaginable, because we could not be with him during the procedure. This new umbilical line was absolutely necessary, though. For the next three and a half years of treatment, it would be used regularly; to put chemotherapy, red blood cells and platelets in, and take blood for measuring progress out.

The weapons are blunt and coarse in this war. Annihilate the foe, restore, repeat once more. Peter's protocol included additional phases after induction with deceptively benign-sounding names like consolidation (chemotherapy to reduce the diseased cells that remain in the body after induction), delayed intensification (more chemotherapy) and maintenance (still more chemotherapy). Maintenance, the last phase, was repeated in 12-week courses for over three years. Each course dismantled his immunity, necessitating hospital stays, transfusions and trepidation. Unexpectedly, we developed a routine. This is the nature of a systemic cancer like leukemia. If Peter had developed a solid tumor with well-defined boundaries it would have been excised. Leukemia has no such boundary. So excising occurs via repeated destruction and renewal, asymptotically approaching cancer-free. Treatment was a long haul to be sure, but desperately not wanting to revisit leukemia gave us the strength and discipline to endure.

Peter turned 12 in January 2007. He is no longer known at school as the boy with cancer. He is just Peter. He remains in remission, strong and healthy, with a flourishing sense of sarcasm. We are always on the look out for consequences of chemo, and often wonder how to tell them apart from normal genetic quirks or the meanderings of a typical 12-year-old. In the corners of our daily lives lurks the question why. Why did Peter get leukemia? Why was our perfect little life derailed? Why us? One of our nurses passed along a notion that helped me frame an answer. The notion is about timing. The question of why Peter got leukemia cannot be answered at the time of diagnosis. Rather, the answer is found in what my family and I make of and do with this experience over time.

Imagine a rock, tossed without malice into a perfectly calm pond. The initial splash is apocalyptic. Serenity shattered. However, as ripples from this splash spread outward in time, the pond is changed, the shoreline altered ever so slightly. And in those alterations, entire ecosystems are born and flourish. I look for ecosystems now. Light will find those nooks and crannies, and an answer will emerge, eventually.