Whether it’s Jesus appearing in a tortilla or Mary in window condensation, I’m drawn to those who see, filled with a freak-show gawker’s curiosity. But I also couldn’t stop laughing the first time I saw the Almighty appear in a Monty Python sky, and I laugh with each successive viewing. I don’t even wait for the scene now; I laugh in anticipation of the cartoon God’s command to stop groveling.
Mom found Monty Python deeply offensive. For years she and Dad chauffeured a plaster Virgin in our heavenly blue Valiant to visit sick and needy L.A. Catholics. Mom said she witnessed miracles, and once claimed to have found blood on a carpet near the altar rail where the priest had dropped specks of the Eucharist. She told me this during my altar boy days as she stressed care and caution with the paten. Holding a golden dish under a communicant’s chin in the event of a dropped Eucharist may seem a simple task, but for me it was like trying to catch a high pop fly at noon with the bases loaded and score tied in the last inning, except that the round thing you can’t afford to lose in the sun or drop was not a baseball, but God. The distinction might be lost in Boston, where I live now, but it meant something growing up a few exits down the Pasadena Freeway from Dodger Stadium. Mom traveled to sites of apparitions, but I think she died disappointed she never had a visitation to call her own.
I can’t say when I began to have my doubts, but they snowballed. For years it mattered little whether there was a God or not. Even now, count me as a maybe. But eight months after Mom died, watching a stranger’s stem cells go to work in my immune-depleted daughter left me with a sense of wonder lacking only the specificity of Mom’s faith. Mom was intolerant of doubt, but my faith can’t survive without it.
If I’d been born with GPS, I’d still trust stem cell instincts over my own. I didn’t feel that way before the transplant, never even thought about it. I thought about it once I turned to stem cells for another chance, watched them begin their miraculous mission from the rectangular bladder they’d arrived in, through that clear synthetic artery and into my daughter, finding their way to where they were needed. I prayed to them because I needed to and they were the closest thing to God I’d ever seen or maybe ever will. Whatever I knew or still believed got nuked right along with remnants of my daughter’s old marrow. Then along came the stranger’s stem cells to start fresh.
Hematopoietic stem cells are extraordinary things, virtually life itself, and make bone marrow transplant misleading. With transplant, I imagine a surgeon cutting open one body, removing a malfunctioning organ and replacing it with one from another person for whom it was somehow expendable. It’s the human equivalent of changing a car part. The battery is never smarter than the mechanic, or almost never, and the liver isn’t smarter than the surgeon. The attention to detail that goes into an organ transplant is vital, and must be meticulous if there is any chance for it to work. The part must be placed precisely and securely into its new home. The organ can do none of this itself. Without human hands to guide it, the organ will sit there until it expires.
With a stem cell transplant, the meticulous work is in the identification of a donor, preparation of the recipient, timely delivery of the marrow and subsequent marshaling of a certain detente between the cells and their new host. But the actual transplant is a mere infusion of bone marrow, much like a bag of platelets or red cells hanging from the IV poll. The stem cells arrive in a beer cooler, like they’re ready to fire up the coals. Hung and connected by a nurse, they drip from a bag, through a catheter line and into the body through the preferred manmade access point. But once inside, they know where to go. They do not need a surgeon’s guidance or skill in their strange new home. The transplant doctor isn’t even in the room most of the time, leaving the work to the nurses. The stem cells go straight to where they’re needed, begin anew their duplicative process and get to work delivering, nurturing and healing. They don’t know whether they’ll be welcome. They may in fact be ornery and require mediation. But they simply know where to go.
We got lucky — that in my lifetime scientists had come to comprehend tissue types, that we found a willing stranger who matched my daughter perfectly, and that from the ashes of chemical weapons and atomic bombs had somehow risen medical strategies for saving lives.
My daughter was treated with cousins of things America once feared Saddam Hussein was hiding. Before the enemy was cancer, chemo debuted on the battlefield as mustard gas. Atomic bombs that devastated Hiroshima and Nagasaki created a desperate need among scientists to understand what made intense radiation such a lethal killer. They discovered it wiped out bone marrow, leaving victims without platelets to stop bleeding or white cells to fight infection. But what if radiation was limited, they wondered, and replacement marrow existed? For scientists investigating a cure for leukemia and frustrated by a recipient’s rejection of new marrow, the idea of using radiation to wipe out leukemia and defender cells was compelling.
But early transplants only worked with the marrow of twins. Typing for a crucial component, the human leukocyte antigen, wasn’t understood. So bleak were results that even transplant pioneer E. Donnall Thomas got out of the business, except for transplants between identical twins. But his research identified genetic markers on white cells, indicators of histocompatability, improving the matches between donor and patient. In 2006, my daughter’s donor was a perfect stranger and a perfect match, right down to blood type.
Our countdown to transplant began on a Saturday and continued on Palm Sunday, which had launched Passion Week and the Stations of the Cross on a calendar in a previous life. We were told it would be boring. If only. I yawned a lot, but boring requires safe assumptions, and those were gone. Nothing could have excited me like the anticipated return of boring, and all it would mean. I craved boring.
Boring disappeared with my daughter’s immune system in September 2005. But in the months between diagnosis of idiopathic aplastic anemia and transplant, I had developed a look of faux boredom, patterned on that Jesus face where his eyes, open and penetrating from one angle, close from another. I needed to see and watch and hear things being done to my daughter, absorb and try to understand them, without showing the dread I felt. When J was hooked up to her first bag of chemo, I looked to measure her sense of violation and test my months-in-the-making, now-he’s-looking, now-he’s-not Jesus face.
We’d watched the end of “Star Wars” the night before, and J named her IV pole R2 Too. She set up her stuffed bunny Nippy in a hammock, fashioned from a sterile mask, on R2 Too. The nurse hooked up the chemo, laughing at the sight of the reclining Nippy. “OK, let’s go,” J said. I think she was telling us to hit the Play button and restart “Star Wars,” but the chemo bag hanging beside a stuffed bunny in a hammock was unnervingly eager to begin its assault. J was saying Go to one dark force or another.
As I prepared to update our Carepage blog, J said to report that the first day of treatment “went really really really well with no side effects. Except for a little nervousness.” A day later, watching chemo & rabbit serum drip into her body, I felt I might throw up myself. Such nasty fluids were coursing into her, and in such quantities. I felt physically ill.
A bigger room became available, and we moved. My wife filled the walls, doors and cabinets with faces, places and memories. J’s grandma had sent autographed posters of her favorite Olympic skaters, and they surrounded her, along with photos of family and friends and Boston doctors and nurses, a string of origami swans from her Sunday school classmates, and a poster of the neighborhood pond where she’d spent hours in times of robust immune defense.
Even for its practitioners, perhaps especially for the practitioners, bone marrow transplant possesses as much disillusionment as hope. BMT is a desperate measure not attempted unless the patient’s life is at serious risk and alternatives are lacking or lousy. Engraftment failure can be brutal. In providing my family a clear view of possibilities ahead of us, the Seattle doctors in whom we’d invested our hopes shared with us the full range of patient reactions — the gratitude, the despair, the incredible joy, agony and ambiguous in-between. The bliss and the blisters.
The last day of conditioning called for total body irradiation. Chemo had been the source of J’s greatest fear, but she’d gotten through that. Now radiation loomed like a showdown with Voldemort, and her spirit was as sapped as her immune system. The seat was cold and uncomfortable, they let her wear nothing but a thin robe, and she had a bloody nose that wouldn’t quit. J had surprised me so often with her courage, but she couldn’t find calm this day, and TBI dragged on painfully. But at last it was done. Conditioning was over. We were ready to receive.
Back in our room at Seattle Children’s Hospital, J was nervous, hungry, beat up and ready for an infusion of hope. “Tell me five good things about what has happened so far.” She demanded an answer. What could I say? Even the nurses were giving her the lead-suit treatment. My Jesus eyes developed a tic. But tomorrow was another day. Day Zero.
Transplant day is said to be a second birthday, but J balked at this. “I was born once,” she said. “That’s enough.”
We were curious when the marrow would arrive, and asked the doctor for an ETA. He smiled. “When the nurse tells me.”
J’s vitals were fine, but she felt awful. We put a “no visitors” sign on the door; nobody but family, medical staff and the marrow of a complete stranger.
When I was J’s age, sometimes I’d go to Sunday mass with my mom. It wasn’t optional, and I didn’t care much for it. Mom got there early and sat front and center. Nowhere to hide. There never is with God, but the front pew was even more exposed. Then Mom would get very distant, kneeling and bowing her head, closing her eyes and entering into a muttering state of prayer as she prepared for the mass to begin, and she’d expect me to do some version of the same. I gave it a shot. A blue veil obscured her face. She encouraged me to mimic her and bow my head and try to get God’s ear, but Mom’s disappearance behind a veil into some distant place came to feel odd and embarrassing and beyond my ability to tag along.
When Mom would go quiet, I’d get fidgety, and I’d play with the brass clip on the pew, which when you let it go just right, in an otherwise silent church, made a pop that could raise the dead. That’s just a saying. Once the mass would begin, Mom’s silent prayer would give way to loud recitation as she emphatically participated in the responsories and song, as if she thought God was hard of hearing, which I had found him to be, but that’s another story.
Mom could tolerate some of my daydreaming, but not during the consecration. When the priest was saying the prayers that would transform the sacramental water, wine and wafer into the blood and body of Jesus, she made sure I was paying attention. She’d do this while attempting not to become distracted herself, so she’d keep her fervent gaze fixed on the sacrificial transformation occurring on the altar, closing her eyes and tilting her head down when the I am not worthy part arrived, and still somehow reaching out with her left hand to hook me and reel me in. She had this way of gesturing with her head to direct my attention where it ought to be. I tried to join her in her distant and mystical place, flailing fervently. God help me, I tried.
I cannot say I found that place eight months after her death, but since letting go of the blood line that was my maternal spiritual inheritance, transplant night was the closest I’d come. Catholicism was the faith of both parents, but Mom took it to an extreme, and it was her version, religion as dark obsession, that I quit.
What I didn’t leave behind was a fascination with the ancient and undying human need for God’s love, and craving for a path forward. The space once held by the celestial and bearded male God of church art and Monty Python sky was occupied now as much by mystical curiosity as any real presence, with more interest in wonder than answer. Maybe this was the easy way out, the coward’s route. What one believes carries such extraordinary power, and I’ve inherited a passion for the transcendent, but if I believe in anything fully now, it’s ambiguity. Ambiguity gives me faith in God’s sense of humor. I don’t know the punch line, but I’m pretty sure I’m involved in the joke.
These days, whenever my faith is tempted to get specific, the specificity returns to dust and is gone in the next gust. And yet when the nurse came into our room holding the bag of stem cells, with eyes open I saw a chalice raised, a miracle newly harvested and in progress, contained and transported cross-country on ice. Special delivery. I didn’t bow my head, but I was filled with awe and blinked back tears.
J finished watching “Madagascar,” and drifted off as Louis Armstrong sang “What a Wonderful World” over the credits. The 277ml bag of stem cells flew in from North Carolina and arrived on the ward around 10:55 p.m. PST in a beer cooler, white on the sides, red flip lid, tan handle. You’ve seen one just like it at the beach or the park. The delivery guy came and went fairly quickly. An ID tag dangled from his neck. Middle thirties, brown T-shirt wet from sweat or rain, dark hooded sweatshirt, head shaved or bald from causes unrelated to chemo, I’m guessing. He could’ve been delivering pizza. I didn’t think to tip him.
It took a half-hour or so for the nurses to check the paperwork, make certain all the details were right — that this was in fact the marrow intended for J. There were no other transplants on the ward that night, but still. The charge nurse posed for a photo holding up the bag. The marrow posed stoically for several photos, which got irritating to J. By 11:30, Nurse Brooke was hanging and connecting it. The IV pole was a crowded place. The marrow hung beside two bags of fluid, a meter, and a couple of stuffed critters in hammocks.
Made drowsy by the time and benadryl, J was fast asleep by 11:40, her head resting on Float, the purple-blue fish pillow church friends brought during her initial days at Children’s Boston. I stared and breathed deeply and watched the bag hung and the catheter connected and the deep red fluid drawn by gravity toward the Hickman and on into J’s chest, where I’d been told it knew where to go and what to do, and I shuddered and felt as if something ineffable entered my own body, like a reversal of the sensation the day the air was suddenly sucked from me and I shook and sobbed uncontrollably as the lid was dropped on my father’s coffin. Some stranger’s marrow was entering my daughter and about to take up residence, a long residence I hoped and even prayed for, though don’t ask me to what or to whom.
I couldn’t have been more present in that room, and yet I was in a distant and mystical place as well, at once existing in first and third person, a magical realm maybe Gabriel Garcia Marquez could explain, and I had a clarity that may never come again, an awareness that some stranger was giving my daughter another chance and I had no chance of comprehending why this was happening. As with my desire to understand what caused J’s illness, I had to let go and accept and stare in wonder. J’s brains and bones and tissue had my DNA, and will forever, however long that is, but her blood and her hope was from someone I’d not met, a total stranger, some anonymous human being, and I had a front-row seat for this mystical transformation. J was now connected to a blood line that had nothing to do with me, nothing to do with my wife, and everything to do with being alive. If God doesn’t exist in that transaction, God doesn’t exist.
My wife had bought a bottle of red wine to celebrate, and we opened it and toasted and hoped. A schoolmarm of a nurse let us know this was not OK, that wine didn’t belong on the transplant ward. We don’t need no stinking metaphors! We could accept that the rule on some level was appropriate, and so I poured the California cabernet down the drain, ran water after it, and left alone what the two became. Just water and wine, down the drain.
We had to wait till J was asleep to take her picture. In it, the bag hangs to her left, and she’s surrounded by posters of Belbin & Agosto, Johnny Weir, Sasha Cohen and Irina Slutskaya. The night the new marrow arrived and took residence, the saints watching over my sleeping daughter wore skates. The guardian angels wore what nurses wear, and worked until their shift was done.
We waited because J got fed up with my wife and I making such a fuss about the arrival of the marrow. We had giggled nervously and marveled and posed caressing the bag, and Nurse Brooke snapped our picture. J wondered aloud what was the big deal? “It’s just a bag of goo!” she said, and I heard the brass clip resonate through the sanctuary, and felt Mom’s tug.
Adapted from “Blood Lines: Fatherhood, faith, and love in the time of stem cells” (unpublished).