We had a typically festive if exhausting week in San Diego, and I for one didn’t notice anything untoward going on with Gabe.
A couple of days before Christmas 1990, my family and I boarded a plane in Oakland bound for San Diego, a.k.a. Grandparentland, where we usually spend the holidays.
My wife and I both graduated from Crawford High in 1968; we’d met in eighth grade, at Horace Mann Junior High. She’d been living in Berkeley since 1969 and I since 1975; our children had been born and were growing up there. Still, San Diego constituted the ancestral homeland, and we made the pilgrimage at least annually. The kids — Jessamine, then 11; Gabriel, then 7; and Peter, then 4 — always eagerly anticipated the trip, for the goodies and favors their grandparents and other relatives would surely bestow on them, especially at Christmastime. This occasion was no exception. But as we strapped ourselves into our seats — we’d commandeered one of those aisles with three seats facing frontward and three facing back, perfect for our little squad — Gabe leaned forward and gave us a look that conveyed pain and distress. “My belly hurts,” he said.
Michelle and I glanced at each other, then at him. The plane was taxiing toward the runway. If he needed to use the bathroom, he’d have to wait. If he was getting sick to his stomach, we’d deal with that as it developed. If he was getting some kind of flu…well, hopefully he wasn’t getting the flu. In any case, there wasn’t much we could do right at the moment. I forget exactly what we told him, but it was something general like, “Just try to relax, and we’ll see how you feel when we get there.”
As I recall, he didn’t complain of any more bellyaches for the rest of the flight. He wasn’t having a problem with his bladder, and he wasn’t getting the flu. We didn’t find out for another couple of weeks, but he was developing something worse.
We had a typically festive if exhausting week in San Diego, and I for one didn’t notice anything untoward going on with Gabe. My father-in-law later reported that he’d thought Gabe — whose intense drive and vast energy reserves normally exceeded those of anyone else you could think of — looked wan and “just didn’t seem right.” Maybe it was harder for me to see the difference, being around him every day. Maybe I wasn’t paying attention. Maybe I simply assumed that my kids, who’d always been blessed with good health, would never be faced with a medical crisis.
After we returned to Berkeley, Gabe started to complain a bit more, of tiredness and minor pains. We figured it for some kind of flu. When it persisted, we called the pediatrician, but we couldn’t get an appointment until a few days later: Monday, January 7, 1991, a date that became the great demarcation point in my family’s history.
With Pete in tow and Jessamine in school, Michelle took Gabe to see Dr. Kittams. I was working at my home office when she called to say the doctor suspected a kidney infection and wanted her to take Gabe to Children’s Hospital Oakland for X-rays. I was to meet her there. But when I arrived at the radiology department, I was told the test had been canceled — which I took as a good sign. With Michelle and the boys nowhere in sight, I headed home. “Well, I hope I never see you again!” I said cheerfully to the folks in radiology. We all had a good chuckle over that one.
But as it turned out, the X-ray had been canceled because the doctor decided instead to order a blood test. He’d found Gabe’s spleen and liver notably enlarged. There were also petechiae (tiny, hemorrhaged capillaries) evident across Gabe’s belly, a sign that his blood was low on platelets, the cells that enable the blood to clot whenever there is a cut or a bruise. All this indicated something bad in Gabe’s system, and a complete blood count was the first step toward determining what it was. So while I was rooting around in radiology, Michelle was off to the hematology lab, where a phlebotomist pierced a vein in Gabe’s antecubital joint (the “inside” of the elbow) and withdrew a couple of vials of his blood. She then took the boys home, by which point I was back in my office about 30 yards away, blissfully unaware of the deepening drama.
It was cold that winter. While we were in San Diego the temperature in Berkeley had fallen to 29 degrees, a rare low for the Bay Area. But that frost was nothing compared to the chill that blew into my office a few hours after I got back, when Michelle, who’d just gotten a call from Dr. Kittams reporting the results of the blood test, jolted me away from my computer screen as she burst through my door.
“I don’t know how to tell you this,” she said, “but your son has leukemia.”
Dr. Kittams had told Michelle straight up that this was serious; he wanted us to take Gabe back to the hospital right away, to be admitted. But he also offered some encouragement, mindful of the fact that huge breakthroughs had been made in recent decades in the struggle against childhood leukemia, which had previously been considered a death sentence. “This is gonna be a hard road,” he told Michelle, “but it’s nearly 100 percent curable.” Or at least, that’s what she understood him to have told her.
We were less encouraged a few hours later, in the emergency room at Children’s, when one of the oncologists receiving Gabe’s case, asked directly to confirm what our pediatrician had said, hedged. “Well, I hesitate to use words like ‘cure,’ ” she said. “But the odds are pretty good.” We learned that for kids diagnosed, like Gabe was, with “average-risk” acute lymphocytic leukemia — by far the most common form of childhood leukemia, and also the most common pediatric cancer — there was something like a 75 percent chance they’d finish their treatment and go five years without a recurrence of the disease. For kids making it that far, the odds of relapsing were no greater than the odds of a diagnosis of leukemia in the general population; in the parlance of oncologists, that’s about as close as anyone comes to “words like ‘cure.’ ” Still, that percentage gave us real reason to hope, and in the months that followed I found myself saying to others more than a few times, “I’ll take those odds.”
Gabe had been taken into the emergency room and held there while a room was being prepared for him on the fifth floor — in “5 South,” a ward we would become way too familiar with in the years to come — because his complete blood count had shown that the leukemia was already eroding his immune system, so he was at risk of infection and needed to be kept in isolation, starting immediately. The doctors explained to Gabe and us that he had contracted a very serious disease, one that threatened his life, but that he was going to get the best possible treatment for it. He was going to be in the hospital for at least a few weeks, maybe longer, depending. There would need to be more tests first, to confirm exactly what kind of leukemia he had and what condition he was in. They didn’t say this, but we would also need the next day or so to begin the task of coming to grips with what they were telling us, to put our life completely on hold, to go so far into shock that we’d need help just to imagine what “normal” looked like, and then to start climbing out of that hole.
The doctors were kind and sympathetic, and especially tender with Gabe. A nurse came along and started an intravenous line going into a vein in the back of Gabe’s left hand, so they could give him blood transfusions and pump certain solutions into him to help his body off-load toxins — and so, when treatment began in a day or so, they could give him the smorgasbord of poisons known collectively as “chemo.” Eventually they brought Gabe upstairs. He seemed reasonably comfortable and not particularly upset — it would be many months before he’d remark on how scared he’d been at the time — and he immediately settled in on the bed with Michelle and started watching TV. The other kids were at home with neighbors, and it was getting late. Somehow, wordlessly I think, we figured out that Michelle would stay with Gabe that night and I the following night, initiating a pattern that would be repeated many times in the following years. As I left I bent over to kiss the two of them, saying, “This will be an adventure of healing and transformation.” I don’t know where a guy gets that kind of stuff. I can’t tell now if I was bluffing, if I honestly believed it, if I was trying to put a positive spin on things, or what. A few days later I started a journal, and the first entry recorded my thoughts just before and after leaving the hospital that first night:
Now we were here, high up in the hospital we’d driven past thousands of times (usually with the thought, “I hope never to see the inside of that place”), and there was no denying it. Our son’s life is in danger and everyone else seems to know what to do but this is not okay I don’t want this to happen nobody asked me first I wasn’t ready for this you can’t do this there’s been some horrible mistake let us just go home now don’t give me that here’s-another-poor-family-who-just-found-out look I want out of this now I’m taking my wife and boy and going home NOW!
…The drive home was cold and quiet, except for my head. I have to tell the kids. I have to tell the neighbors. I have to tell the whole freaking world. My son has leukemia. My son has leukemia. I have to tell somebody. If I tell everybody, eventually I’ll tell somebody who can undo this. Somebody who knows how to put it back the way it was. There’s somebody out there who knows how to do that; I just have to find that person. Meanwhile, I have to tell people.
So I went home and delivered the news, thereby ruining Jessamine’s and Peter’s lives. It didn’t really register with Peter, who at four only understood that his big brother was very sick. Jessamine started crying and asked if Gabe had gotten sick because she’d kicked him a day or so earlier. I was able to reassure her that she had nothing to do with Gabe getting sick. When I explained that he’d need transfusions, she immediately said, “I want to give him my blood.” I had to disappoint her with the news that she was too young to be able to do such a thing. This whole day was teaching me that the world sometimes seems to prefer the arbitrarily cruel to the sweetly good or heroically kind.
Eventually the neighbors went home, in stunned silence, and I got the kids to bed. I forced myself to eat a sandwich. I called my best friend — another old Crawford High grad, with whom I roomed for much of the time we attended ucsd, from 1968 to 1972 — who was then living in Olivenhain. Finally, I fell into bed, exhausted and enervated. I was soon asleep and slept through the night. The next day I would find that this unwelcome turn of events was not some colossal misunderstanding, and there was no authoritative someone who could recognize the mishap and send us home to laugh off a big scare. When I awoke, it was, to my dismay, into a world in which my son, my vibrant boy, my baseball prodigy and nature mystic, my proud and volatile and handsome son, who inherited my Italian curls and birthmarks and possessed more natural charisma and physical vigor than I could ever dream of — a world in which this boy I adored had leukemia.
From the time he was a toddler, Gabe evinced an iron will, a tenacious drive to prevail, a thirst for adventure and experience, a boldness that came alive at the prospect of challenge. At the age of two he would throw himself into backyard games of Whiffle ball as if they were deciding contests of the World Series. His face lit up with discovery and joy at the first encounter with a new sound, new game, new machine. (He adored bulldozers and such and was ecstatic when a gas-company crew parked its heavy equipment right in front of our house for the duration of a project.) When he latched onto a fun thing, he was inexhaustible. The first time I thought something was seriously wrong with him turned out to be the evening before he was diagnosed; we’d been tossing a football for only about ten minutes when Gabe, who’d normally play catch until the seasons changed, came up to me and said, “I wanna stop. I’m tired.” The leukemia was depriving his blood cells of hemoglobin, meaning his blood wasn’t carrying enough oxygen to his muscles, brain, and other organs. (Try running up and down the block without oxygen sometime. You have to be Gabe to go as long as ten minutes.) He did not suffer defeat or even temporary setback cheerfully; he used to drive me crazy during those backyard games when, just as he (or his “team”) started to lose the advantage, he insisted on changing the rules to ensure his eventual triumph. He never could accept an outcome other than prevailing. This sensibility often made him hard to live with, but it became his single most important asset in the long struggle to defeat the disease that was quietly and relentlessly trying to eat him alive from the inside out.
Sometimes I think Gabe was put on earth to play sports, because he also had, even as a youngster, a physical grace, an ability to suss out the landscape around him and the physical task before him and do exactly what he needed to do with aplomb and apparent ease. I’ve observed thousands of young athletes, having worked for years as a coach, referee, and administrator in youth-soccer and -baseball leagues; this ability of Gabe’s was light-years beyond anything I’ve ever seen in any other kid. He didn’t have the greatest raw talent or strength or speed; but he seemed to have an ability to know what was going to happen before it happened and to position himself perfectly to make a slick, intelligent play. I saw him do this countless times, and I never figured out how he did it. It wasn’t from practice; he hated drills and would rather waste an afternoon watching junky TV programs than work on his soccer dribbling or his baseball swing or his basketball shot. But point him at a pickup game and he was there, leading his squad and making plays all the livelong day. His brother Peter, himself a talented athlete and artist and a remarkably self-reliant kid, would spend innumerable hours perfecting a skill, without coaxing. For Gabe, the game was all: teacher, arena, spiritual calling. I’d say it was ironic that such a natural athlete would find his body betraying him, but it wasn’t ironic, it was a fucking crime.
Still, for years the soul-satisfying delight he took in sports (and, later, in music, in dances, in hanging out with friends) provided the crucial, bone-simple motivation as he pursued the only deal being offered by the disease: Take these poisons into your body on a regular basis, and when you’re not feeling so lousy that you might actually prefer to die, you’ll get to do the things you love. Over the years he endured hundreds of “pokes” (punctures of his skin and veins to draw blood and/or administer fluids or chemo), 50 or more spinal taps, a dozen or more bone marrow biopsies, numerous procedures requiring general anesthetics, scores of bouts of nausea, and thousands of oral and intravenous doses of drugs that made his hair fall out, puffed up his face and belly, caused his bones to ache, disrupted his sleep, provoked supersonic mood swings, destroyed his mucous membrane, induced anxiety, or left him too weak to sit up, let alone walk or run. Yet any time there was even a remote chance of playing a game, going to school, or heading off on an outing with pals, he was in on the action. Countless times I saw him finish a stint at the clinic, puke into a bowl, gather himself, and say, “Come on, Dad, let’s go. I’ve gotta get to school — I’ve got a game.” Usually I’d have called the coach beforehand to warn him Gabe probably wouldn’t be able to play that day. Eventually his coaches learned not to pay me much heed, because Gabe was more likely to be there, suited up and ready for duty, than not. I should have known; from the earliest months of his treatment Gabe would never pass up a chance to play if he could manage to stand. Once, about four months after he was diagnosed, I had to leave the house to coach his soccer team in their regular Saturday-morning game, but he was due for a visit from a home-care nurse, who would give him an intramuscular injection (into his thigh) that would leave him nauseous and unable to run. “You stay here and rest,” I told him. “I’ll tell your teammates you’re not feeling well but you’re cheering them on and want them to play hard and have fun.” He accepted that and seemed relieved that he wouldn’t be letting his team down. An hour or so later he suddenly appeared at the game, in uniform, jumping up and down on the sideline and urging me to put him in. I picked up my jaw off the ground and got him in the game; I don’t remember whether we won or lost, but I have a clear image of Gabe trotting all over the field, sweating and calling out to his buddies to pass him the ball, beaming with the joy of flinging his body around with total abandon.
The docs put him on the “standard protocol”: three years of chemo. That first day, first week, first month, first year were hell, and we thought we’d never reach the finish line. But we got through it. We arranged our lives around Gabe’s clinic schedule. We were fortunate in that he did not require any unscheduled hospitalizations — his first hospital stay was a remarkably brief nine days — and he quickly went into remission. He tolerated the treatment very well, and after he entered the “maintenance” (i.e., less brutal) phase six months into the protocol, he regained his hair, much of his strength and energy, and a sort-of-normal lifestyle. For the rest of those three years he never missed a day of school or a game, unless he was actually at the hospital. In retrospect, he sailed through that first treatment regimen. In March 1994, he finished that protocol, and his end-of-treatment tests all proved negative. We were, of course, elated, and took off for ten days in Hawaii to celebrate. We understood that there were no guarantees, but we devoutly believed the worst was over, that Gabe had characteristically prevailed.
For the next six months we watched rapturously as Gabe, now ten, again became the lean, muscled, vigorous boy we’d always known. His hair grew long and luxuriant. An opulent ruddiness returned to his cheeks. He and Peter spent that summer playing street hockey all day every day; his stamina was restored to its normal superhuman level. He had a memorable baseball season, including coming this close to hitting a grand slam in the championship game. In late August he and I took off for a three-day fishing trip in the Trinity Alps, where we laughed hysterically as we yanked rainbow trout out of Lewiston Lake.
For the whole family, it was a happy, productive time. I got my first book contract. Michelle and I began making plans to remodel our house and got as far as refinancing our mortgage. Jessamine and Peter received more of our time and attention, after years of having to make do with whatever energy we had left over (often, little or none). Life could not have been better.
And so it got worse. On September 1, 1994, I took Gabe for his monthly blood test and checkup. His blood counts were perfect, and he looked and felt better than he had in nearly four years. As Barbara Beach, his primary oncologist, examined him, we regaled her with tales of our fishing trip and other summer adventures. “Tell her about your almost-grand-slam,” I said to Gabe as he lay on the exam table. He had loosened his pants and Dr. Beach set about checking his abdomen for signs of enlarged internal organs, his lymph nodes for swelling, his gonads for anything unusual. “Okay,” he said, “it was the championship game, and I come up with the bases loaded.” A devoted sports mom herself, she smiled, muttered an encouraging “Uh-huh,” and went about her business. “So I hit this ball way out to left-center field. And there’s nobody around. So I take off. Two guys come in. The guy at first is rounding third. I’m almost to second. Then the center fielder comes outta nowhere and…” But all of a sudden Dr. Beach was not listening anymore. And now her face was contorted into a frown.
What she found was one enlarged testis. Several different biopsies (and agonizing days) later came the diagnosis: “testicular relapse.” We had been informed, back at the beginning, that “5 to 10 percent” of boys who contract acute lymphocytic leukemia later suffer this kind of relapse, in which some leukemia cells (theoretically, as few as one) evade annihilation from the chemotherapy by “hiding out” in the genitalia, to which the blood flow is not as profuse as it is elsewhere. There was still good reason to be hopeful: The leukemia had not proliferated in Gabe’s bone marrow and had not crossed the “blood/brain barrier” into his spinal fluid. Testicular relapse had been treated many times with an effective protocol. “All the kids we’ve had” with this kind of relapse, one doctor told me much later, “have made it.” Some of those kids had been off the second treatment for ten years or more. Michelle and I got the bad news about the relapse over the phone, then went and met with one of the oncologists; we came back shocked and scared but persuaded that our chances were still good. But that didn’t help us much with the task of telling the kids.
As it happened, Gabe was late coming home from school that day, so we told Jessamine and Peter first. It was a beautiful, late-summer day, bright and warm. Jessamine, not quite 15, burst into tears; Peter, 8, became quiet. They had questions, and we had fitful answers. We cried together. After a while we calmed down a bit. Gabe didn’t come home for another hour or more. Finally, we saw him walking up the block, across the street, with a small band of his buddies. His school, Willard Junior High, had recently held tryouts for its flag-football team, and this turned out to be the day when the final roster was posted. Gabe, not yet 11, had just started sixth grade and making the team was pretty central to his notion of being successful in the world. As he and his friends got close to our house, he called out, “Hey, guess what? I made the team!” I can’t say for sure, but that may have been, up to that point, the happiest, proudest moment of his life.
We called him into the house — making up some reason for his buddies not to come in for a visit — and he joined us in the living room, plopping into a big leather recliner. After a moment Michelle said, “We got the results of the test today, Gabe.” He looked at her eagerly, with a confident smile and an open expression anticipating what he was sure would be good news, and asked, “And was it okay?” Michelle, who over the years was much better than I at summoning the courage and forthrightness to say these unspeakable but necessary things to our son, said softly, “No, Gabe. They found some leukemia.”
“NO!” he cried, as his face collapsed into a horrible combination of shock, fear, betrayal, and outrage, and his tears came. Having to witness that look on his face — and seeing it still — is the price I pay for all the sins I’ve committed in this life.
The four of us quickly went to his side, stroking his arms and tousling his hair and crying with him. There was nothing fair about his getting sick in the first place, but this was downright rotten. He’d done what was asked of him, held up his end of the bargain, had a taste of getting his life back, and now that was being taken away. (Is God really so cavalier as to welsh on deals like this? I don’t know if he wondered that, but I did.) We tried to comfort him, pledged that we would always be there for him. After a few minutes, he became eerily quiet. His tears stopped, and he got a faraway look in his eyes. (I noticed it, but didn’t think much of it at the time; I thought a lot more about it when I saw that same look a few years later.) We assured him — and, no doubt, ourselves — that this was not a time to give up hope or lose resolve.
We would need resolve by the trainload, because the treatment program they wanted to put Gabe on would last another two years, and would be ten — no, a hundred times more intensive. More frequent spinal taps. More numerous hospitalizations. Heavier drugs, in higher doses. Greater immunosuppression. Higher toxicity: One of the drugs, adriamycin, was so certain to cause cardiomyopathy — damage to the heart — that the nurses actually tallied the cumulative dose given to a patient and stopped administering it altogether at a certain point, even though the protocol prescribed more.
As if that weren’t enough, in the early weeks of this treatment plan, Gabe would receive ten “fractions” of radiation targeted at his testicles. It didn’t hurt or make him sick, and in fact he hopped off the radiation table several times to go play for his junior-high-school football team. All the radiation did was render him sterile and deprive his body of the ability to produce testosterone. This meant that he would later (after this new protocol was completed) require hormone-replacement therapy just to have the most meager evidence of transitioning into manhood. When his buddies started growing like cedars, sprouting whiskers, dropping several octaves in their vocal register, Gabe still had a smooth boyish face, a slighter musculature, a sweeter voice, and shorter stature. He hardly ever said anything about this, but given his competitive nature, not to mention the hyperawareness of peer society that obsesses almost all teenagers, I know this part pained him greatly. It also tore at me; although I was grateful to have him in however compromised a state, and to have a plan for saving him, I felt cheated of the joy of watching him become a man and, in time, a father. Worse, I felt he was being forced to endure not just another round of difficulty but gratuitous insult on top of it.
This treatment schedule was so much more intensive than the previous one — the visits so much more frequent, the side effects so much more substantive — that we couldn’t see, at first, how we’d get through it. But we didn’t have the option not to, and so we did. As she had years earlier, Michelle took a leave of absence from work. I worked as much as I could, less than I needed to. Jessamine and Peter once again fended for themselves more than they would have liked but as much as required.
Gabe protested more than he had the first time around and experienced more problems with nausea, including anticipatory nausea, in which he’d become sick hours or even a day before receiving chemo. He became dependent on anti-nausea and anti-anxiety medications, which eventually proved largely ineffective. The heavy periodic doses of prednisone he was required to take gave him a more chronically puffy look than he’d had on the previous protocol, and he was never able to find the strength or stamina to play sports with the same freewheeling abandon he’d managed to approach in the earlier years of treatment. But again his determination saw him through: He vowed, for example, to try out for and make the school team in as many sports as he possibly could. As a result, in the second year of the second protocol, during seventh grade, he played for the school’s football, wrestling, basketball, soccer, and baseball teams. One day there was a soccer game scheduled at the same time as a wrestling meet. Gabe played the first half of the game as goalie and did not give up a goal; at halftime, he went into the gym for a wrestling match and pinned his opponent. He returned to the soccer pitch just after the game had resumed, immediately took the field as a midfielder, played very well, and almost scored a goal; after the game, he returned to the gym for another match, losing it on points. (“He must have been getting tired,” his soccer coach and history teacher said years later.) I only wonder what he would have done if he hadn’t been sick or weakened by chemo.
He finished this protocol in October 1996, not long after his eighth-grade year got underway. As we neared the finish line, we could feel him and us running out of gas; there were times when he pleaded not to go to the hospital for another scheduled overnight stay, knowing he’d feel nauseous the whole time. “I don’t need it,” he begged. “I know I’m okay. I don’t have any more disease in me. Please.” He’d crumple into a pile and cry, pleading as if for parole. But each time, eventually, he’d grab his blanket and pillow — he hated the smell of hospital bed-things — and Discman and CDs and we’d head for our date with an ugly drug called cytoxan. Or whatever.
About a month or two before he finished this regimen, as he was getting ready for bed one quiet evening, he came up to me and Michelle and asked, “Have the doctors said what the chances are of me relapsing again?” We were flummoxed by the question and its abruptness. “Well, not exactly, but all the kids they’ve treated this way are doing very well,” we offered meekly. “Why?”
“I was just wondering,” he said. “I was thinking about whether or not I’d want to do chemo again if I relapsed again.”
It was late and not time for a long dialogue about such ponderous matters. We tried to offer him encouragement, reminding him he was almost done with this ordeal. He didn’t seem upset or anxious. Indeed, it seemed he was weighing his options in a rational, dispassionate way. We were the ones falling short of being dispassionate, for we thought, reflexively, that we’d put up with endless years of chemo if that were required to keep him alive. In any event, we managed to conclude the conversation uneventfully, and he went to bed.
He finished just days after his 13th birthday, and later that month we threw a big picnic/party in a local park to celebrate. Our neighbors videotaped the proceedings. The tape starts with a brief appearance by the boy himself, who is beaming, barely able to contain his glee, and impatient to join his friends in some mischief. I put the tape on a few months ago and couldn’t watch more than a few seconds.
The rest of that school year was sublime for Gabe. He had a succession of girlfriends; although several of the romances ended suddenly and not at his urging, he seemed to rebound from them easily enough and remained friends with most of the girls. In January, we went on a Make-a-Wish trip to the Big Island of Hawaii, where Gabe “swam” (well, played, in a controlled setting) with a dolphin. He made more friends that year than ever before. He didn’t get back into tiptop shape, but his face and belly lost their puffiness. He made the honor roll. He and his friends graduated in June, the same week that Jessamine graduated from high school and Peter from elementary school. Once again it seemed the heavens were smiling on us.
This time we had more warning. The week after graduation, he went for his monthly blood test a couple of days before his regular checkup. The complete blood count revealed some weirdness: low platelets, low hemoglobin. Not dramatically low, but lower than normal. For six months his blood tests had been good. Now they gave us a reason to worry in earnest about the paleness and tiredness he’d been plagued with since graduation, which we’d wanted to chalk up to overactivity and lack of sleep.
Another biopsy; another relapse — this time, in the bone marrow. Just like that. Dr. Beach again had to deliver the bad news.
The only recourse was a bone marrow transplant, so extreme a procedure that there was as good or better a chance of being killed by it as of being cured. (I later likened it to “dropping a nuclear bomb on somebody.” One of the transplant docs said, “That’s a good way of putting it.”) And first Gabe would have to undergo a month or more of “reinduction therapy” — chemo as intensive as anything he saw in his second protocol, blasting him in hopes of inducing one more remission and thereby increasing the likelihood that a transplant might work.
He spent a solid month in the hospital, a first for him and us. Halfway through, he came home — for only one night, as it turned out, for the next day his blood pressure was so low he couldn’t stand, and he spiked a fever. We rushed him to the Children’s Hospital emergency room; the attending physician there took one look at him and helpfully observed that the state of his vital signs “made the hair on my neck stand up.” She shipped him off to the intensive care unit, where he quickly stabilized. The next day he went back to 5 Onc, where he soon continued his therapy. Meanwhile, the rest of us had given blood samples, which were being typed with a space-age methodology to see whose genetic material most closely matched Gabe’s — to see, in other words, if any of us might be a suitable bone marrow donor. Michelle and I were “guaranteed half-matches.” Jessamine and Peter each had a 25 percent chance of being a good match.
A miraculous break: Peter was compatible in six out of six typing factors — “evidently a perfect match,” in the words of the lab report. (The rest of us were only three-out-of-six matches. When he heard this, Peter, by then close enough to teenagerhood to smell it, said, “Aaaah, you guys are weak.”) This was the equivalent of winning the Super Lotto jackpot. No: better. Our hearts leapt at the news; we called the grandparents, alerted our friends, exulted in this apparent reversal of fortune. Gabe said stoically, “I knew it would be him.”
After a reprieve of about a month, during which time it was confirmed that the reinduction therapy had produced a “solid” remission — and Gabe was able to attend a week-long session of Camp Okizu, the straight-from-heaven program for children with cancer and their families — he was admitted to Lucille Packard Children’s Hospital at Stanford, about an hour away from us, for the bone marrow transplant. Packard offers one of only two pediatric bone marrow transplant programs in the immediate Bay Area. We could have gone to UC San Francisco, which is slightly closer to our home, but we didn’t know anyone there. Packard’s program is run by our friend “Dr. Mike” Amylon, whom we’d known through Camp Okizu, on whose board he serves. He’d never been our doctor, but we, and especially Gabe, had grown close to him over the previous six years since the whole ordeal had begun, and we very much wanted him in charge of Gabe’s transplant. We got the okay from the insurance company and set up an initial appointment, but one day we heard from a nurse at Children’s that our insurer was “redirecting” us to UCSF, because they “no longer had a contract” with Packard for pediatric bone marrow transplants (although they did still have a contract with Stanford Hospital for adult bone marrow transplants). Later that same year, the two hospitals would merge. If we had gone a few months earlier, or a few months later, there wouldn’t have been an issue. But Gabe needed the transplant right then.
Don’t ever ask me to talk about the Kafkaesque logic of our health-care system, especially the way we finance it and how coverage decisions are made. We were among the “lucky” ones: Over the years our insurers paid out three-quarters of a million dollars, easy, for Gabe’s medical care. We were not bankrupted, not forced to sell our home, not forced to watch our loved one go without a necessary treatment. But when I heard that we would not be allowed to go where Gabe had already invested his heart and hopes, I was ready to rip somebody’s lungs out. Fortunately, it didn’t come to that; a judiciously worded letter faxed to the insurer’s medical director — and the fact that some poor entry-level customer service rep, doing the grunt work so the insurer’s CEO could earn well into the six-figure range, had mistakenly advised us that we could go to Stanford — led to a reversal of their decision and the negotiation of a one-person contract for Gabe.
We arrived in Palo Alto on Monday, August 18, 1997. The first day was taken up with tests and preparations for the “conditioning” that would begin the next day: four straight days of “total-body irradiation” three times a day, followed by one day of “high-dose” chemotherapy (I was shocked to learn there were doses higher than what he’d already received), followed by two days of “rest.” And on the ninth day, the transplant.
One of the things they did that Monday was fit Gabe for the harness he’d wear during his radiation sessions, including customized lead blocks used to shield his lungs from the invisible but withering rays. They took a few Polaroids of Gabe in the harness, standing in a Plexiglas booth on a little pedestal. I happened to take one of the snapshots with me when I headed back to Berkeley, leaving Michelle behind with Gabe. As I neared my house, I spotted a soccer buddy and pulled over to say hello. “How did it go at Stanford?” he asked. I started to tell him and pulled out the photo to show him. “Here, this is kinda weird, take a look at this,” I said. He managed to gaze at the photo for about three seconds before bursting into tears. The shocking thing for me, looking back, is not that he cried, but that I somehow didn’t anticipate that he would. I had become so inured to the horrors of the all-out battle against this hated disease that it didn’t seem bizarre to me that my son would be strapped into a latter-day torture chamber. And here’s where we zap you with enough radiation to make you glow in the dark. It won’t hurt, but after a few days you’ll puke just from coming to this unit, and you’ll be so weak you won’t be able to keep your feet for the whole blast. Sound good? Okay, step right up. My friend’s reaction rattled me and showed me that my reflexive optimism had led to an underestimation of how difficult the months ahead would be. Before we were through at Stanford, that second protocol (begun three years earlier), which had seemed undoable when we first learned what it would entail, would look like a cakewalk.
The principle, as Dr. Mike had explained it to us during our consultation visit the month before, was to deliver the maximum treatment tolerable — enough to provide the greatest possible chance of eradicating the disease, but not enough to kill you. With a disease as obstinate as leukemia, which erupts in the blood-forming tissues, and a case as resistant as Gabe’s, the margin between those two parameters was thinner than we at first understood.
But we plunged ahead, because there was no option not to. Gabe weathered the conditioning with his characteristically fierce resolve, “zoning out” (as Michelle and I used to call it) with the TV or video games when he wasn’t vomiting. He didn’t take much to sympathetic words or counseling. He wanted help with practical things like going to the bathroom — which meant unplugging his IV machine, with its 12 lines infusing him simultaneously, and dragging it along behind him like a doppelgänger — but he was gonna get through it his way and couldn’t be bothered with the latest thinking in body/mind healing or other such abstractions. As that first week progressed, he became weaker and weaker, and on the day of high-dose chemotherapy he vomited until his eyes just about popped out of his head. But he never complained or expressed any doubt that he could go through with it. He wasn’t happy, but he wasn’t quitting either.
On Tuesday, August 26, I awoke before dawn at the Ronald McDonald House, across the way from the hospital, where I had spent the night with Peter and Jessamine. I had to bring Peter to Surgery by 6:15. We were met there by Dr. Mike and a team of nurses and an anaesthesiologist. Michelle came down from the third floor. Jessamine went upstairs to grab some more sleep and, later, keep Gabe company. Peter was a little nervous, but mostly excited. He never said so, but it became clear that he took great pride in his role in this drama, and rightfully so. They wheeled him off on a gurney and he looked back at us as they turned the corner to the operating room. Do it, Pete, I thought.
An hour or so later, Dr. Mike had extracted some 700 cc of marrow, blood, fat, and bone from two points in Peter’s iliac crest. He ran that through a filter to remove the fat and bone, then transferred what was left to a blood-transfusion bag. They did a lab test to quantify the “nucleated cells” in Pete’s marrow (to make sure there were enough cells for a person of Gabe’s size); it was triumphantly robust. Before long, Dr. Mike entered Gabe’s room, still dressed in his surgical scrubs, holding a plastic bag full of what looked like the richest burgundy in the world, and beaming like he was bearing the Holy Grail, which, for our money, he was. Gabe, however, was not pleased; he anticipated that the infusion of the marrow — which was to be done with a simple intravenous drip, not by injecting it into Gabe’s marrow; it seems that marrow cells “know” where they belong and make their way there — would nauseate him, so he announced that he didn’t want to see the bag. It was hung on his IV pole with a pillowcase over it. A few days later, as part of my continuing on-line chronicle of Gabe’s saga, I wrote, on the Well:
…Jessamine began to stir, and I urged her to sit up and witness. Michelle and I stood at the foot of the bed. Gabe looked a little irritated. At 8:56 AM, Peter’s marrow began to flow into Gabe’s body. I told Gabe I wanted to say something. He waved me away, in an effort to veto my delivering a kind of benediction, but I had already decided it was my benediction, dammit, and I was gonna deliver it whether he wanted to hear it or not. So I said, “Remember that you were created by love, you were born into love, you are surrounded by love. Now I ask you to accept this gift of love. May it bring you joy, and love, and health.” He had already tuned out, I think, but I was content.
Michelle and Jessamine nodded their assent, but Gabe wasn’t having any. He rolled over and closed his eyes. If we wanted to get all spiritual, we’d have to do it by ourselves.
The infusion went smoothly and quickly. First Michelle and later I went downstairs to check on Pete, who was coming around from the anesthesia and wanting to scarf Popsicles. They needed to observe him for a while before letting him go, and he was disappointed that the infusion of his Good Stuff was over and done with before he got up to Gabe’s room. By then Gabe was feeling a bit more sprightly himself, and before long Pete was sitting on Gabe’s bed and the two of them were playing video games together. I shook my head in amazement. It wasn’t the last time one of them would blow my mind. Just the next morning I took Peter into the clinic so Dr. Mike could check his wounds and apply a fresh bandage. Everything looked a-okay, and when the exam was over Peter hopped down from the table. “There aren’t many marrow donors who would hop down from an exam table 24 hours after the marrow harvest,” said a very impressed Dr. Mike. But that was nothing: A couple of hours earlier, Peter had been shooting baskets in front of the Ronald McDonald House.
Those were bright moments; there was also a plenitude of dark ones. In the first few weeks in Lucille Packard’s bone marrow transplant unit (“3 North,” in this case), we saw other recent transplant patients shipped off to the intensive care unit — and worse. One boy who received his transplant the same day as Gabe but whose donor (his father) was not nearly as good a match, developed serious complications only a few days later. One evening I ran into his family on my way back from dinner. Their son had been in the intensive care unit and on a ventilator for days, and I approached them eager for news and hoping for the best. “How’s it going?” I asked. “Not so good,” the mother replied with a wan smile. “We just got word that things are really getting bad.” It was becoming evident that her boy was not going to make it and didn’t have much longer. (Indeed, he died the following day.) “But,” she said, her face brightening, “we understand Gabe’s doing well!” I found myself in the peculiar position of downplaying Gabe’s relatively good condition at that point, for fear of deepening her wound.
Gabe was in fact doing remarkably well, with no sign of fever or other complications, stable vital signs, and only the “routine” aftermath of the “conditioning” to contend with: zero immunity; severe mucositis (in which the cells of the mucosa — the lining of the mucous membrane — break down and slough off, thereby effectively turning the entire mouth, throat, and esophagus into one gigantic canker sore); chronic diarrhea; blood in the urine (another byproduct of the mucositis); total hair loss (including, for the first time, his eyebrows). And that’s just the stuff I’m willing to tell you about.
Yet, somehow, Gabe — and, just as remarkably, the rest of us — endured. At the end of September he was discharged to the Ronald McDonald House, where he stayed for another five or six weeks, during which he had frequent outpatient appointments and several unscheduled hospitalizations (of a few days’ duration each) for unexplained fevers. He underwent a bewildering battery of tests, some to seek the source of the recurring fevers (CT scans, endoscopy), others “routine” (bronchoscopy, spinal taps), not to mention the blood tests. He was severely immune-compromised, and would be until at least “day +180” — six months post-transplant. His GI tract had been so whacked out that it took him over a month after discharge to begin to eat and drink in anything like a normal fashion. He was obliged to ingest a distasteful smorgasbord of pills, several times a day, for various prophylactic purposes. He had little energy, and no strength. Each day was a battle to gain a little more purchase and a constant war against dirty surfaces, possible contamination of intravenous equipment, all the innumerable potential sources of infection. Gabe came through it all, with Peter’s marrow “engrafted” (meaning the transplant “took”), and, most important, in remission. “His marrow looks great,” said Dr. Mike after one scheduled biopsy. Our ears drank in the words.
Finally, on November 7, Gabe was released from house arrest and allowed to return to our Berkeley home. He immediately started pissing on his perimeters, so to speak, like a dog staking out his territory. After two and a half months away, the place probably seemed more than a little unreal, and he no doubt felt the need to confirm his position in the pack order. So he demanded deluxe food service, total control of the TV remote, the right to once again boss his brother around. (Some days later, when I suggested to him that Peter was maybe the one guy in the world he might want to be extra nice to, he was unmoved. “I mean,” he said, “I respect him and all [for being the marrow donor], but he’s still heck of annoying.”) It won’t surprise you to learn we were happy to oblige. We had put our lives on hold since June — Michelle had taken a leave from her job and I had suspended my role in a book project; we were subsisting on meager savings augmented by an unfathomable amount of generosity from friends, colleagues, and strangers — and for the first time in five months we caught a distant glimpse of what it might look like to get our lives back. Tired, dazed, and spent, we were elated just to be together under one roof again.
Thanksgiving, a few weeks later, was the most sublime in memory. I don’t recall a thing about the dinner, except that my in-laws came up from San Diego to share the happy day with us. I just remember feeling a bottomless gratitude of a kind I’d never known before.
Christmas was pretty goldarn good too. We stayed home, unwilling to stray too far from the acute care Gabe might need if a fever (or worse) developed and, frankly, needing to stay quiet and cool our jets. Gabe’s blood counts were not quite normal but were within expectations. His appetite was growing, and he gradually gained energy and vitality. He still couldn’t attend school because of his compromised immunity, but the school district sent a tutor who met with him every day, and he thrived under the personalized attention. His main problem was boredom, which he alleviated with visits from friends and a religious devotion to, God help us all, The Jerry Springer Show. Sometimes he combined the two, and I worried for the future of the species.
By the end of the year Michelle and I were both back at work. In January Gabe started to get a little bit of exercise, going outside to toss the ball with his brother or take a stroll. Jessamine, who’d begun her first year at UC Santa Barbara about a month after the transplant, returned for her second quarter. Peter made the basketball team at Jess and Gabe’s alma mater, Willard Junior High.
In February we went back to Stanford for Gabe’s six-month checkup and “immune reconstitution studies.” The verdict: OK. Gabe’s blood counts were not quite normal, but they were better than expected, and his immune function was sufficient to allow him to circulate in the world. Before we left the clinic he began agitating for us to get the dog he’d long wanted but which he’d had to forgo until his immune system recovered. And we made plans for the surgical removal of his Broviac, the catheter that had been implanted in his chest the previous summer to facilitate the frequent blood tests and even more frequent administration of medications and fluids he’d received in the intervening months. He was quite clear that he wanted the device gone before he returned to school, “in case I get in a fight.”
And so, in March 1998, Gabe made his triumphal debut at Berkeley High, where his cohort had started their freshman year six months earlier. You never saw a kid so happy to go to school. Girls fawned over him; guys were elated to once again have the company of their homey. He dressed cool. He hung out. He chilled. He laughed. He came home and played with his dog, a frisky boxer puppy he named Kaya, after the Bob Marley song. He started practicing the drums in earnest — we’d gotten him a set for his birthday, although he received it a month late, when he returned from Stanford — and, I have to say, developed a nice groove. He took a photography class and became enraptured with the art, and with a classmate named Gabriella. The romance he would have liked to have blossom never materialized, but they became fast friends. Everyone, it seemed, was his friend. And he appeared to regain his vigor overnight. I remember one afternoon he and Pete went up to the high school to play one-on-one soccer, and they returned more than an hour later, flushed and sweaty. Amazingly, Gabe was not out of gas, and I felt he was nearly all the way back.
We hit the first bump in this particular stretch of the road in April 1998, when we went to Children’s Hospital for his monthly blood test and checkup. (We didn’t need to go back to Stanford until Gabe’s one-year checkup.) The complete blood count found a drop in his platelet count, which, since the transplant, had never quite reached the low end of normal but had held pretty steady within striking distance of there. The other counts were fine, and a quick call to Dr. Mike brought the reassuring reminder that blood counts could dance around maddeningly for the first year or more after a bone marrow transplant before finally settling in the normal range. “If nothing else is out of [normal] range besides the platelets,” he said, “I’m not too worried.” That was good enough for me, and, evidently, for Dr. Beach. She asked if Gabe had had any sniffles or other sign of a viral infection. As it turned out, he had, and she thought that was the likely culprit for the drop in his platelet count. “I think we have an adequate explanation for it,” she said. She and I had moved on to other topics, such as a kidney-function test we needed to schedule, when I glanced over at Gabe and was shocked to find his face contorted and tears flowing down his cheeks. I asked what was wrong. “I don’t want my cancer to come back,” he said in a frightened voice. Barbara and I tried to reassure him we weren’t talking about that, weren’t suspecting it, and he calmed down. Months later, however, she would tell me that she “started praying” when his platelet count began to fall.
The following month his platelet count was lower still, to the point where it was worrisome by itself and he was enough at risk of untoward bruising that he needed to avoid contact sports and other such activities. But his hemoglobin was higher than it had been the previous month, a good thing, and his white blood count lower, which was even better, at least in principle — when white blood counts climb above normal limits in a leukemia patient, trouble is at hand. He felt fine, and there was nothing untoward in his exam. So our anxiety level was rising, but we were still optimistic.
Over the next several weeks, ugly bruises began to appear on his legs, his arms, wherever he might sustain a slight blow. His energy still seemed good, and he went to school avidly, even doing a term paper on bone marrow transplants that earned an A+ and an awed note from his teacher. The bruises, though — they got worse. They’d clear up after some days, but we hadn’t seen anything like it on him since he was first diagnosed. With each new bruise, Michelle and I felt our hearts crack a little more.
Gabe was due for his next blood test and checkup the second week of June. We delayed it until the end of the week so he wouldn’t have to take time off from school during his finals. He finished them on Thursday, June 11, and we went in first thing Friday morning for the blood test. Waiting around for results and an exam was driving him crazy, however, since he had plans to get together with his buddies on their first free day after the end of the school year. Dr. Beach agreed he could go, and she’d call me with the blood counts and we’d schedule an exam for Monday.
I’d started a new job as an editor at Yoga Journal less than two weeks earlier but was forthright with my new colleagues and superiors that the issue of Gabe’s health was very much in the air and that in particular I would need this morning, and perhaps the whole day, off to take him to the clinic and…whatever. So, as the afternoon waned, a couple of hours after Gabe had gone to the movies and who knows what all with his friends, I was in my home office — in the same chair I was sitting in when Michelle came in that day seven and a half years earlier — when the phone rang.
“Phil,” I heard in the receiver. “It’s Barbara.”
She exhaled sharply, as if in defeat. I think I knew from that.
“There’s no good way to say this,” she went on. “There were blasts in the blood.”
There was no need this time to confirm with a bone marrow sample. Lymphoblasts, the immature, ineffectual white blood cells, are not supposed to appear in the bloodstream. At all. They’re supposed to stay in the marrow until they mature, then be released into the bloodstream to do their immune duty. The only time they show up in the blood is when there are so many of them from wild, cancerous reproduction they spill out and begin crowding out healthy blood cells. When, in other words, leukemia is manifest. That first blood test in January 1991 found them. After all those years, all those medications, all those pokes and procedures, oceans full of chemo and suns full of radiation, all that pain and struggle and sorrow and worry, sacrificing all there was to sacrifice and then some, all those hopes dashed and rebuilt — after all of that, we were right back where we started.
Only this time, for the first time, there was no plan. What do you throw at a monster after it’s laughed off your most powerful weapons? Nothing. Instead, you prepare for it to swallow you whole. Dr. Beach began to explain that, at this point, there was not really any hope for a cure. She spoke instead of “buying him some good time” with another course of chemo that might produce another remission, however brief. (Dr. Mike later suggested the same thing.)
I asked her what would happen if the disease ran its course unimpeded. He was losing immune function, so an infection could overwhelm him, even before the leukemia got out of hand. But more immediately, his platelet count had now reached a critically low level, and she explained that he was at risk for a spontaneous cerebral hemorrhage. “To be frank,” she said, “that’s not a bad way to go. They just go to sleep and never wake up. Compared to what can happen, that’s not bad.” It was right in here that I started to lose it.
“Barbara, I don’t know what this sounds like, but…I just don’t want him to suffer anymore,” I said, sobbing into the phone.
“I know,” she said, sobbing back.
The next few days were pure hell, and I can honestly say I would prefer being flayed alive to having to relive them. For we found it necessary, Michelle and I, to keep this news from Gabe, and from his brother and sister. It happened that Jessamine was due to leave for Camp Okizu, where, at 18, she was now a counselor, the very next morning; and Peter, who would turn 12 in a couple of weeks, would depart for the camp two days later. There was no need to send them off to what was normally a joyous, fun-filled week burdened with worry and shocked senseless. But that meant containing the news in our hearts and processing our grief out of sight and earshot. Like I say: pure hell. We lost our appetite, our energy; we practically had to think deliberately to breathe. We lay on the bed in the afternoon weeping. We took the dog for a walk just to get away from the strain of being in the house and not telling. We decided that if Gabe asked us directly, we’d tell the truth. But he didn’t ask directly. And so we spent the weekend carrying around a black hole where our hearts were supposed to be.
Finally, on Monday, June 15, we were able to tell Gabe. I wrote an account of it the following day:
We took Peter to the Camp Okizu bus and sent him off okay. We saw several families we know but managed to avoid conversation almost completely.… Then we went to get some coffee and just sat in the car a while to try and steel ourselves and bleed off a few more tears. We even went to get the car washed. No rush.
We got home around 9:30 or 10. Gabe was watching TV. I told him we’d brought home a cherry cheese Danish, one of his favorite treats; he quickly downed it with a glass of milk. He was watching some game show, and Michelle and I puttered around for a while. Finally a program ended and he complained there was nothing to watch and we urged him to turn off the TV. He said no but then slid into an upside-down position on the couch, his head hanging off the cushion, and clicked the TV off with the remote.
“So, Gabe,” Michelle said, “you know your platelets have been low.”
“Yeah,” he said, his head still hanging upside-down.
“And the blood test on Friday showed some leukemia in your blood.”
“NO!” he cried, his lip trembling. Michelle and I quickly moved to sit on either side of him on the couch. “I don’t want to die! Why should I have to die? I’m only 14!”
“We know,” we mumbled through our tears, stroking him. I put his head on my lap.
“I’m scared,” he said. He called for his mom a couple of times, and she told him she was right there.
Then — within seconds, it seems — he calmed. “It’s okay,” he said. “I’m at peace. Don’t worry about me.”
That didn’t settle everything, of course. Over the course of the following hours, he expressed disorientation (“I don’t know how to live,” he said about an hour later, as we were preparing to go out), fear, depression; and I’m sure those feelings will resurface. But overall he has seemed, since that moment, remarkably, almost eerily, calm.
He asked about what happens when you die. I said we didn’t know; Michelle pointed out that many accounts from people who’ve had “near-death experiences” report that “it’s beautiful, a beautiful feeling, a beautiful light. And there’s no chemo there.” “That’s right,” I added, “and no pain.”
We explained what both Dr. Beach and Dr. Mike recommended, but he didn’t hesitate a heartbeat before ruling that out. Right after that, he became nauseous and had to go to the bathroom to vomit. It says a lot about the depth of his feelings on this that just discussion of chemo makes him queasy.
We continued discussing various things for a while. At one point he looked up at me, smiling through trembling lips, and said, “Hey, Dad, maybe you can write a book about me.” “You know I will,” I said, weeping. “And maybe you can write something too.”
This seemed to lighten his mood. “Hey, this sucks,” he said, smiling broadly. “I’m gonna die a virgin!”
He took some Ativan to calm him down and settled in on the couch, our conversation continuing in fits and starts. “I don’t want you guys to get all wrecked over my death,” he said, apparently meaning he didn’t want us to divorce or otherwise go to pieces. Michelle pointed out that although she and I have had our arguments, we have been together a long time and love each other deeply and will stay together. I affirmed this. And we said that we’d already had plenty of opportunities to become alcoholic or whatever and had managed to avoid that route and expected to keep doing so.
A little later, Gabe said he wanted his college money to go to Jessamine and Peter. I’m not sure I can express how that sounded to us.
At some point he asked us, in a small voice that reminded me of a much younger Gabe, if we’d take care of his puppy. We promised him we would.
After an hour or so, he announced that he didn’t want to talk anymore, grabbed the remote and turned the TV back on. This seemed eminently reasonable to us, so we retreated to some more puttering. A short time later we realized that the weather was magnificent, the dog needed some exercise, and, since Gabe had said earlier he wanted to go to the beach, a trip to Rodeo Beach in Marin County was in order. So we made our way out there. A light fog was hovering over the city and the Gate as we turned in to the Headlands. The sun glistened in a million particles as we crossed between the Lagoon and the Pond. The beach was being well used by a healthy number of families and surfers. We dropped our blanket at the crest of the dune. Michelle and the dog wandered off, and Gabe sat gazing at the waves. I took out the camera and snapped off a few photos of him, then of him and Michelle, before he protested that he was the one who should be taking photos.
Eventually we fell into just lying back and letting the sun and sea spray and balmy breeze — and a bit of sand kicked up by the dog — wash over us. Michelle went off with the dog again and Gabe and I lay there quietly. Then all of a sudden he said, “I think there should be a plaque for me at the field” — the soccer/softball field that the youth-soccer club I until recently managed developed and maintains.
“Well, you know,” I said, that field’s gonna change. “The east field and part of the west field are gonna go away, and what’s left will be reconfigured, and…we’ll have to move or get rid of the building where the plaques are.”
“But you’re gonna keep the plaques, right?” he asked.
“For sure,” I said. “We’ll put them someplace else where people can see them. And I’d be pleased to see one for you.”
“There should be a soccer tournament named after me,” he offered.
“That’s a good idea,” I said, “after the field is rearranged and new fields are built and we can have a tournament.”
“Or, they should name the new field after me.”
“I was thinking the same thing myself,” I said.
The whole summer wound up being a schizoid, dreamlike confluence of our unspoken dread with Gabe’s apparent ease. We drove up to camp to break the news to Jess and Pete — in an eerie coincidence, we’d had to do the same thing the previous summer — and once we all came home and the news had sunk in, we actually had what appeared to be a normal routine. Gabe went to summer school and hung out with his friends. I went back to work. We had dinners together. It was like a bizarre joke, with no one laughing. One night a couple of weeks into this anomalous season Gabe left the house after dinner, and Michelle and I had a talk with Jessamine and Peter to see what feelings were brewing in them. They both became glum and discomfited. “It’s weird,” Peter said. “He’s not acting sick.” And yet you want me to understand he’s going to die, he didn’t have to say.
Before long Gabe’s white blood count had climbed to the point where he realized that if he was going to make it to Camp Okizu in August, he needed “some help” — in other words, he had to take something to keep the leukemia from getting out of control in a matter of weeks. So he agreed to a course of “chemo light,” which wasn’t so intensive that it would require him to be hospitalized or make him feel lousy. Of course, there was no expectation it would accomplish anything more than “keeping a lid” on the leukemia. But he was clear on that, and he made his choice. Gabe was determined to enjoy what time he had left and not spend it feeling miserable or being imprisoned in a hospital. He’d seen that movie. And so over the next two months he took frequent oral meds and went to the clinic for an occasional injection of chemo, which he found fairly tolerable. His marrow was not producing any red blood cells or platelets to speak of. Fortunately, we could more or less stay on top of that with transfusions, which he received two or three times a week. Unfortunately, there was nothing we could do about his immune system, which was just about nonexistent.
During this time he and we sought out some adventure. We took a trip to Trinity Lake, just north of where he and I had gone fishing, and rented a houseboat for a couple of nights. The whole purpose of this expedition was so that Gabe could take a ride on a jet ski, an idea that popped into his head suddenly one day (after which he afforded us no option not to do it). The trip was equal parts disaster — don’t ever ask me to pilot a boat for you — and idyllic beauty, limned with the simple pleasure of being together; the jet ski part was, of course, altogether too brief to come anywhere near satisfying Gabe.
Shortly thereafter Gabe flew to San Diego with his friend Gabriella. She was off to visit relatives; he saw his grandparents, aunts and uncles, and cousins, but his main itinerary was an overnight stay at the home of Gary Plummer, the former San Diego Charger and San Francisco 49er. Gabe had first met Gary at a 49er training camp two years earlier and really connected with him (in part, because he adored the way Plummer tackled people), and Gary had visited Gabe at Children’s Hospital during the reinduction therapy before the transplant. (Gabe had no clue about the visit until seconds before Gary walked in; photos from the visit show Gabe all but floating above the bed. It’s not stretching the point to say that this encounter fortified Gabe for the struggle that lay ahead.) During that hospital visit, Gary challenged Gabe to a one-on-one basketball game at his house on our next trip to San Diego; he came to visit us soon after Gabe’s third relapse and reiterated the challenge. That was all Gabe had to hear. He spent a day and a night with Gary and his family, including a trip to Belmont Park for a turn in the roller-coaster marathon then being sponsored by Star 100.7. Gabe’s doctors were no more enthusiastic about a roller-coaster ride than they were about the jet ski, pointing out that a spill on the water or even a hard jolt on the roller coaster could cause internal hemorrhaging. Gabe didn’t want to hear it. What was he supposed to do — save his living? For when?
Gabe made it to Camp Okizu; in fact, he went twice — that is, he went for the first week and then was invited back for a second week, which we’d never heard of before. As it happened, he had to leave camp near the end of the first week to receive an emergency transfusion of platelets at a Sacramento hospital (about an hour from the camp). The staff had realized something was up when his gums began to bleed spontaneously. While at the hospital it also developed that he had a high fever, which would not respond to high-dose antibiotics. He quickly began feeling pretty lousy. Michelle got a call at home from a camp nurse who’d gone with Gabe to the hospital, saying she thought he was “going into toxic shock.” When Michelle relayed the message to me at work, I felt my nerves fry. For two months we’d known that we could lose Gabe on a moment’s notice, relatively speaking, but his condition had stabilized so well that we were lulled into a false sense that that moment would not come, not yet, not soon, maybe not ever. I rushed home from work to join Michelle at home, where we waited for Gabe — who, given an option of being admitted or going home, made the obvious choice.
An hour or so later a sports utility vehicle pulled into our driveway, and Gabe climbed out of the back. He was still feverish, and obviously weakened, but mainly annoyed — at missing out on camp. In his hand was a Burger King bag containing uneaten fries; he’d downed the burger. The counselor who drove him later noted that, while most people go to Burger King for a burger and fries, Gabe ventured out for “a burger and platelets.” Over the following hours he perked up a fair bit, and by nightfall he was agitating to be brought back to camp the next day. Jessamine was enlisted to drive him and stayed the week as a counselor. Gabe required another transfusion that second week, but this time they sent him off before he started leaking, and he was able to return to camp directly.
As summer waned he began to have fevers with some frequency. This always necessitated a trip to the hospital, administration of intravenous antibiotics, and a blood culture, but he was repeatedly sent home when the doctors judged him not in immediate danger. His spirits remained upbeat and his social life remarkably active.
The recurring fevers were a sign that he was losing ground — not to the leukemia itself, but to his lack of an immune system. Yet he still approached each day eagerly. Finally I asked him how he viewed his position and what he wanted to do. I didn’t want to instill any false hope in him, but it was time to reevaluate. “A couple of months ago,” I said, “you told us you were at peace with dying. The most important thing seemed to be going to camp. You did that, but clearly you’re not done living yet. What else do you want to do? What are you willing to do in order to do that? We need to figure that out. Are you willing to do more chemo?” (By this I meant a more intensive course aimed at inducing yet another remission.) “What if you could go back into remission? If you made it another six months or so, you could get your driver’s permit. If you stay in remission…you know, in another coupla years you’d graduate. After that, who knows?”
He didn’t answer right away (although the prospect of driving lit him up pretty good), and in fact he didn’t decide until a few days later, after a long talk he had with Al “Popeye” Goldberg, the Camp Okizu counselor closest to Gabe and himself a survivor of childhood cancer. “You might as well go for it,” Al told him. “What have you got to lose?” Gabe came home from his talk with Al and announced, “Okay, I’ll do it. But first, I want to do two things: I want to go to school for a while, and I want to go skydiving.”
Gabe went to school for two weeks and loved it. He somehow got the idea that he could attend classes and do barely any homework; here too he was very clear on what he wanted. School was a venue where he could coexist happily with his peers, flirting with girls and joking with guys — where, in short, he could feel normal. The homework thing never became much of an issue, because at the end of the second week of classes he spiked a fever and had to be hospitalized.
He spent six days at Children’s, getting antibiotics and blood cultures and watching his temperature swing back and forth between almost normal to notably febrile. The cultures proved negative, and by the sixth day he had been afebrile long enough that they were ready to turn him loose. Meanwhile, plans were made to admit him again soon to begin the One More Try round of chemo. But first, of course, there was the small matter of going skydiving. This required me to burn up the fax and phone lines to Washington, D.C., and elsewhere, seeking special permission for Gabe, who was several years shy of the minimum age of 18 to make a jump. We scheduled it for Friday, September 18, 1998, although we didn’t yet have permission. On Thursday, the nurse writing up Gabe’s discharge papers wondered aloud, to no one in particular, “Let me see if I’ve got this straight. We’re letting him go home so he can jump out of an airplane?”
Friday dawned brilliantly clear and warm. Gabe was weak from his run of fevers and the usual hospital-induced lack of nourishment; he also needed blood and platelets. Michelle took him to the hospital to tank up while I worked the phones to Washington. Someone at the Federal Aviation Administration phoned me early to say he was “walking this through” and we’d get our permission by fax shortly. That was about 7:30 a.m.; by 11:00 a.m., when a bunch of Gabe’s friends gathered at our house to caravan to the “jump zone” about an hour away, there was still no fax. I called the Federal Aviation Administration by cell phone en route, and again when we arrived. It’s coming, I was told. More time went by. We had lunch. Gabe got woozy, from the combination of exhaustion, low fever, general debility, nervous excitement, and the awesome notion of plunging 14,000 feet from an open door on the side of a plane. He lay down in our van for a while. Eventually he was called into the hangar to suit up. The fax came through while he was being fitted. I read it as it spit out of the machine and yelled with elation. My next thought was, Oh, shit. What have I done?
Gabe, Al, our dear friend Mindy (another Camp Okizu counselor), and eight or so others climbed aboard the twin-engine prop job that awaited them about 50 yards from the hangar. Most of the other customers had jumped scores, even hundreds, of times; Al had jumped once, while Mindy and, of course, Gabe were on their maiden jumps. They would each be harnessed to a jump instructor, who would control the dive, pull the ripcord, and land them safely.
It took about 20 minutes from the time the plane taxied away until we saw it overhead, disgorging jumpers. From the landing area where we gathered, we could see tiny white dots, eventually bursting into color, way overhead. Somehow we figured out that the first ones were Gabe and his instructor. They were floating back and forth like a sleepy butterfly. When they had come down to perhaps 2000 or 3000 feet, we started yelling up at them: “Go, GABE!” In a moment we heard his excited, wordless whoops floating back to us. A couple of minutes later Gabe and partner were gliding onto the lawn, landing in a sitting position. He kept his butt in contact with terra firma for a second, flashing a victory sign as we cheered and hugged each other. Michelle and I reached him first and took turns embracing him more fiercely than ever before. (I have a picture on my desk at work: me with my arms around the exultant Gabe, who is in full jump regalia, holding his goggles and a water bottle, grinning from here to there.) We all repaired to the hangar, where we watched the video — the video! — shot by a cameraman who jumped the split-second before Gabe and his instructor. (A soundtrack by the Beastie Boys was being dubbed onto the video as we watched.) We all hooted and hollered, but at the end Gabe, disappointed to see himself flailing helplessly in the 120 mph free fall, announced he had to jump again, “because I have to make a better video.”
The next day Gary Plummer showed up to take the boys and me to a football game at UC Berkeley, his alma mater. Before leaving, we showed him the skydiving video. Just then one of Peter’s friends called, and when Pete couldn’t convince him Gary Plummer was there, he gave Gary the phone. After schmoozing the kid up for a minute, Gary asked him, “Hey, can you fly? Because Gabe can. No, I’m serious. I’m watching a tape of Gabe right now, and he’s flying.”
A little over a week later, Gabe was admitted to Children’s Hospital for intensive chemo. He had rested the previous week and was feeling pretty good. Amazingly, the first five days, during which he received doses as high as anything he’d ever gotten before except during his transplant “conditioning,” went exceedingly well: no nausea, good intake of food and fluids, good rest. Gabe received numerous visits from buddies and was in good spirits. He even took short furloughs to our home. By the end of the first week of treatment, his blood counts zeroed out, as we knew they would. But he was still doing well enough to receive visitors and come home briefly.
A few days later, a small purplish thing, like a blemish, appeared on Gabe’s right wrist. I noticed it but didn’t think much of it until one of the attending physicians, on morning rounds, pointed it out to the residents. Over the next several days more such lesions appeared — on Gabe’s forehead, on his belly, on his left upper arm. It didn’t take long for the docs to realize that Gabe was fighting an infection. Except that in this case, “fighting” was too charitable a word, for his system really had nothing to fight with; whatever token immune responsiveness he might have had at summer’s end had just been obliterated by the five days of intensive chemo (with more scheduled in the days ahead).
The doctors huddled, especially concerned with a large, ugly scab that had formed on Gabe’s right knee. About a month earlier, on the Friday of Labor Day weekend, as we were preparing to go to Camp Okizu’s Family Camp, Gabe had fallen while pushing a neighbor kid on a backyard swing and had scraped his knees pretty noticeably. The left knee eventually healed, but the right knee, which was almost healed at one point, never fully processed whatever had gotten under his skin. A thick scab now covered a wide crater, and it was causing him some pain. A surgeon was brought to look at it, and the medicos decided to “debride” the scab. This would give them a chance to culture whatever was there and, it was hoped, rid his body of it. It seemed like a good idea.
The culture came back positive for a fungus, all in all the worst possible news. Fungal infections are a bitch to get rid of in a healthy host; in an immune-compromised one they’re essentially impossible to clear. Now the doctors were sure the lesions popping up on his skin were signs the fungus was spreading throughout Gabe’s body. As if that weren’t enough, separate tests found a different fungal infection in his gastrointestinal tract.
Gabe was visibly weakening but still resolute. He came home for a few hours on Wednesday, October 7, his 15th birthday, for an impromptu celebration with about 20 of his closest friends. He ate a little cake and mugged for the video camera, but when everyone left he conked out on the couch. The fungus wasn’t tiring at all.
The docs put him on amphotericin, a thermonuclear device of a drug that has come to be regarded as a miracle in the fight against fungal infections. One prominent side effect experienced during the four-hour-or-so infusions of the medication are severe tremors, which not even preheated blankets or the cuddling body of Michelle or me could abate. Gabe endured many nights of this torture without complaint, because he understood, as he had so many times over the years, that this was the price of his ticket. He believed he would prevail against this latest opponent.
But the fight was rigged; it was like going into a boxing ring with your hands tied behind your back — and blindfolded. The ampho accomplished exactly nothing. New lesions appeared every day. The doctors added daily infusions of “donor white blood cells,” in hopes of borrowing someone else’s immunity until some foothold could be achieved. Nothing. By this point Gabe was barely eating or drinking and found it too difficult and too painful to stand any longer than the time it took to pee.
To fully take stock of the situation, a new and comprehensive round of kickass tests was ordered, including a cat scan, a bone marrow biopsy, and, most gruesome of all, a lung biopsy. An earlier X-ray had turned up a spot on Gabe’s lung, which his doctors feared was a fungal lesion. To biopsy it, they had to pierce his left ribcage and insert a probe to the exact spot of the lesion, bite off a sample, and remove it.
Gabe was never the same after that long day of invasive procedures. His ribcage roared with pain, and he seemed completely wiped out. When I arrived that evening for my “shift,” he said to me darkly, “You’ve got your work cut out for you,” fully aware that he was more dependent than ever.
The lung biopsy came back positive for yet a different fungus. This meant Gabe was under attack by no fewer than three fungal organisms. At the same time, the bone marrow biopsy showed that, while the heavy chemo had succeeded in wiping out most of the cells in his marrow, of the few that remained, an unacceptably high percentage were blasts. Meaning that if we waited for his blood counts to recover, in hopes of his being able to mount more of an immune response — assuming that the still-fragile graft of Peter’s marrow was even capable of recovering from the chemo — the only result would be another relapse.
“We’re not doing him any good,” said Barbara Beach, “and in fact we’re just making him more miserable [with the amphotericin].” And so, on October 20, 1998, we brought Gabe home.
Despite the circumstances, we were once again relieved to be under one roof together. Gabe settled in on the living room sofa, and for the first few days, he was sometimes alert enough to have conversations, watch TV, and receive a few visitors. And in that first week he had more than a few. Besides his school buddies, he was visited by several members of one of his favorite bands, Smash Mouth, who’d heard about his plight from a mutual friend. They schmoozed Gabe and razzed Peter about his putative hormonal urges, presented Gabe with a trainload of signed photos and such, and before leaving requested a photo of Gabe skydiving. He signed it, “Be your best — Gabe Catalfo.” (The band’s latest album, Astro Lounge, is dedicated in part to Gabe.)
We also arranged for a Tibetan lama, who months earlier had sent Gabe a “healing cord” via another friend, to come see Gabe and offer prayers to the Medicine Buddha. Months earlier, my friend and colleague Rick Fields, who had recruited me to work at Yoga Journal and who had written How the Swans Came to the Lake, a landmark history of the dharma’s coming to the West, had taught Gabe to meditate and introduced him to the visage and powers of the Medicine Buddha. Now, as Lama Kunga, the Tibetan monk we’d asked to come, sat beside Gabe and suggested in his broken English, “You should try to live as long as you can.” A moment later, as he was uttering the prayers in a low voice, several of us closed our eyes and tried to focalize whatever beneficent energies we could summon or imagine on the prostrate form of the boy we loved. Several days later Gabe told Michelle that while Lama Kunga was voicing the prayers, “He psychically put them in my mind, including their meaning. I can’t tell you the words or exactly what they mean, but I’ve been saying them in my head since then.”
That first week home also saw another visit from Gary Plummer, who had come at my request. I had asked him to help Gabe see that he didn’t need to fight anymore. What little resistance Gabe had offered to the idea of coming home centered in part on not wanting to disappoint his pal Gary, for when Gary visited Gabe three months earlier, he had coaxed from Gabe a pledge to “never give up.” Now, God help me, I was asking Gary to convince Gabe to do just that. He told the story of a game several years earlier in which the 49ers were being beaten soundly, and he became enraged at his teammates for not going all-out in an effort to win in the closing minutes. “I was furious,” he said, “but you know what? They were right. We had fought as best we could, and we had lost. Even though the game wasn’t technically over, there was no way we could have scored enough to win. There was no shame in accepting the defeat.” This is what the situation forced me to do: ask another man to tell my son he had been defeated. It turned out to be the right thing to do, for the football metaphor and the admiration and love Gabe felt for Gary enabled him to hear the words without upset. That, and the strong likelihood that Gabe already knew.
After an hour, Gary said he had to leave. I went to the other room to get Michelle to say good-bye. I couldn’t have been gone more than 20 seconds. When we got back to the living room, we were astounded to see Gabe standing, enveloped in Gary’s massive arms, hugging his buddy good-bye. I don’t know who was crying more, Gary or us. Gabe’s eyes, as I recall, were dry, although I know his heart was full. As I think back on it, the moment seems almost impossibly heroic — but then, we’d come to expect that of him.
The second week was quieter. We kept visits to a minimum. Gabe, who since before he left the hospital had been receiving a constant infusion of narcotics to ease his pain, was conscious only for fleeting minutes a few times a day. Michelle, Jessamine, Peter, and I spent time with Gabe, individually and together, saying the things we needed to say to each other. We devised a little ritual where we dimmed the lights, lit a candle, and sat holding hands in a circle — two of us reaching over to touch Gabe’s hand or foot to complete the loop — professing our love, thanking Gabe for being in our lives, expressing our pride and admiration for him. One evening we had finished and were about to let go our grasp of each other when Gabe raised his head, opened his eyes halfway, and announced he had something more to say. “I love you guys,” he said, “and you’re the best family I could have.”
In the following days Gabe weakened further. Having earlier stopped eating, he now stopped drinking. It was necessary to increase the dosage of his pain medication every day or two. He would ask for the TV remote but could no longer focus his vision on the dancing lights a few feet away. It was becoming hard to make out much of what Gabe was saying, both because his diction was becoming imprecise and because he was traveling back and forth across the boundary between wakefulness and dreamstate.
On Monday, November 2, I was walking through the living room on my way to take a shower, when I noticed that Michelle, kneeling beside the sofa, was crying. Gabe was sitting up. I asked what was wrong. “Gabe told me he’s dying,” Michelle said. “Not today, he said, but soon.”
I sat on the sofa next to him. I swallowed hard and asked, “Are you ready, Gabe?”
“I don’t want to leave you guys,” he replied.
“We don’t want you to leave either,” I said. “But we don’t want you to suffer. Gabe, we’ll miss you every day. But if it gets too painful, or it’s just too hard, we don’t want you to hang on just for us. It’s okay to let go.”
“Promise me you’ll stay together,” he said. He was still sitting up, but he could barely keep his eyes open.
We each took one of his hands and with our free hands clasped each other’s fingers. “Listen to what I’m going to tell you, Gabe. The love that brought you here is still strong. We pledge to you that we’ll stay together.”
He nodded his assent, and his relief was palpable. I kissed his left hand, and Michelle kissed his right hand. Then he raised our hands to his lips and kissed them both.
There was nothing more to say. He lay back down and drifted off to sleep.
The next day Gabe was visited by a boy named Frankie, whose older sister had been a friend of Jessamine’s since preschool but whose family we’d all but lost touch with since they moved away some years ago. Earlier that year, Frankie himself had contracted the same form of leukemia Gabe had fought for more than half his life. Frankie was doing well on treatment and had become friends with Gabe at Camp Okizu that summer. Now, seeing Gabe in the deplorable condition he was in, Frankie was inconsolable and wept freely at Gabe’s side.
“Don’t worry about me, Frankie,” said Gabe. “I’ll be fine. It’s beautiful where I’m going. I wish you could see it.”
On Wednesday Gabe was barely conscious at all. We could understand almost nothing of what he said, when he said anything. He repeatedly tried to shift himself on the sofa, in a vain attempt to get comfortable. He’d want to sit up, then give up and lie down, only to find that unsatisfactory. He’d ask for something then refuse it. The home-care nurse characterized his obvious misery as “terminal restlessness.” For the first time I began to feel that I just could not countenance his struggle any longer — that I actually preferred seeing his life end to seeing his suffering continue — and even said as much to a neighbor. But of course I didn’t mean it.
We increased his pain meds one more time, and by about 9:30 p.m., when Michelle was getting ready for bed, he was beginning to quiet down and appeared to be resting comfortably. Michelle leaned over to kiss him and said, “Well, Gabey, I hope you leave this world as easily as you came into it,” a reference to his lightning-quick (three-hour) labor, ever since which he had been in a relentless hurry to let the world know he was here, to do a ton of living, and make sure everyone knew about it. Michelle went to bed; as had become my custom, I stayed up, sitting next to the sofa and quietly reading while remaining alert in case he needed anything. Peter had gone to sleep, and Jessamine — who had withdrawn from school and come home the day Gabe left the hospital — was reading in Gabe’s room. The house was quiet.
Shortly after 11:00, I noticed Gabe’s breathing beginning to slow down. I watched it for a few minutes and realized this signaled a change. I grabbed a copy of Sogyal Rinpoche’s Tibetan Book of Living and Dying and sat on the coffee table just inches from Gabe’s side. There, I read several prayers from the book to Gabe: prayers for the dying, codified centuries ago in The Tibetan Book of the Dead and re-rendered for modern readers in Sogyal’s book. “Know that you are forgiven,” I read (adapting one prayer slightly), “for any harm you may have thought and done. May you accomplish this profound practice of phowa [transference of consciousness] and die a good and peaceful death, and through the triumph of your death, may you be able to benefit all other beings, living or dead.”
At about 11:30, Jessamine emerged from the bedroom on her way to brush her teeth. “Were you reading him a story?” she asked.
“No, I was reading prayers,” I said.
She looked down at him, lying motionless except for the rising and falling of his chest and silent but for the breaths entering and leaving his mouth.
“His breathing has changed,” I said. “It’s slowing down.”
She looked at me, then looked again at him. “Do you think it might happen before morning?”
“I really don’t know,” I said. “But why don’t you tell him you love him one more time.”
“Goodnight, Gabey,” she said, kneeling down to kiss his forehead, a tear on her cheek. “I love you.” A few minutes later, her ablutions finished, she went to bed.
Still sitting on the table, I took Gabe’s hand in mine and with my other hand stroked his arm. “Thank you, Gabe, for all the joy you’ve given me,” I said. “I’m so grateful to have had you. I’m so proud of you. And I love you so much.”
His breathing slowed further, and a moment later it had become a reflexive, infrequent gasp.
“Now, Gabe, it’s time for this suffering to be over. Now, my son, go be free.”
He gasped, and then long seconds went by without a breath. Just when I was sure he would not take another breath, he gasped again.
Many seconds passed, but no more gasps came; he had reached his allotted number of breaths for this life. His chest was now still, but I could still see a faint pulse in his neck, as his brave heart tried to carry on after the rest of him had surrendered. There was no last beat; after a fraction of a minute, the pulse just faded away and he was gone. Not only had I watched my son die, I had held his hand and ushered him out.
The next afternoon, our family, now reduced to four, went for a walk in Cesar Chavez Park, near the Berkeley marina. We brought Kaya, now entrusted into our care. We made our way to the northwest corner of the park, to a nub of reclaimed land that juts out into the bay, and sat on a bench that sat just four and faced across the water directly at Mt. Tamalpais. The sky was cloudless, as vast as can be imagined outside the Great Plains, and a shockingly deep blue, reminiscent of the Medicine Buddha’s lapis lazuli.
We were quiet for a long time before Michelle asked Jessamine about the crying she’d heard not long after we’d finally gone to bed following hours of sitting with Gabe’s body. (I’d roused Michelle and Jessamine — Peter was too deeply asleep — and we wound up calling the neighbors over too.) Jessamine said that her tears had not been sorrowful.
“I was just drifting off to sleep,” she said, “when I heard Gabe’s voice. And it was a strong voice — it was a healthy Gabe, not a sick Gabe. I asked him if it was easy.
“ ‘Yeah, it was easy,’ he said, ‘just like breathing.’
“And then he said, ‘It feels so good to walk again.’ ”
Some 1000 people gathered at the First Congregational Church of Berkeley a week and a half later for Gabe’s memorial service. They had come from the various communities that had been galvanized by Gabe’s saga: Berkeley High, which in Gabe’s last weeks had become a unified community of concern, showering our household with hundreds of letters and origami cranes; the youth-soccer community, which had led the fund-raising effort that sustained our family over the previous year and a half; the on-line community of the Well, where I had kept a chronicle of Gabe’s victories and setbacks from the first days of his diagnosis; dozens of campers, counselors, staff, and families from Camp Okizu; relatives, neighbors, friends, coworkers, some of whom had traveled hundreds of miles (one former Camp Okizu counselor drove in that morning from Elko, Nevada).
It was an exceptional event. Two Berkeley High women, close friends of Gabe’s, performed an original interpretive dance. Three of Gabe’s buddies played music — one a heartrending solo-trumpet reading of the mournful “Days of Wine and Roses.” A Camp Okizu aggregation sang a favorite camp song, “I Want to Be Strong.” Acoustic-music stars Laurie Lewis and Tom Rozum, for whom Gabe used to cat-sit, sang Laurie’s neo-gospel classic “Haven of Mercy.” Maverick theologian Matthew Fox gave a closing benediction. Gabe smiled roguishly on the entire proceeding, in the form of a huge, blown-up photo of him in mock Hawaiian garb, taken only months earlier, as he prepared to depart for a theme party.
Gabe had said in the weeks before his death that, in lieu of a funeral, he wanted his friends to have a big party. (When Michelle suggested one possible location, he soberly commented, “Oh, no, that’ll never work — it’s way too small.”) So, after the service, most of the crowd repaired to an adjacent room for sandwiches and pastries (including cherry cheese Danishes) and dancing to music provided by two expert DJs who also happened to be Camp Okizu counselors. At one point, two of Gabe’s closest girlfriends came up to me complaining that the kids weren’t dancing. “Well,” I said, “you just tell them that Gabe wanted them to have a party in his honor, and they better get their booties shaking.” For good measure I approached the DJs and covertly told them I thought it was time to whip out the Sam and Dave — music of my youth, to be sure, but also music that, I’m proud to say, Gabe adored. The body has not yet been created that can resist Sam and Dave, and the room was soon jumping. Hours later, the crowd much thinner, they played Bill Withers’s “Lean on Me,” another song Gabe loved, from a CD he’d been given as a birthday gift only weeks before. The remaining number spontaneously linked arms in a circle around the room and did a gentle step-left-and-step-right while singing the song together.
People said afterward they had left the church changed. Brought together by concern, love, admiration, and, finally, grief, they found themselves in a momentary community, enlivened by the courage and insatiable desire of a boy — and, more, by the knowledge that such courage and desire existed, could be plumbed in their own hearts.
Our family was bathed in love that day. The next day, the world was quiet, and Gabe was still dead.
I took a leave from my job and stayed out the rest of the year. In December, the four of us took a brief trip to Hawaii, hoping to find quiet and a chance to lick our wounds and rebond as a family. It was not the best vacation we ever took; it wasn’t really a vacation at all. But we did relax, and cry, and start to be a foursome.
In January I went back to work, Jessamine went back to school, and we began the distasteful, Herculean task of “getting on with” our lives. At times we joked that we had to, because we’d promised Gabe we would. There was no great mystery to it; we put one foot in front of the other, bought groceries, took out the garbage, did homework, walked the dog. Looking back, it seems the first few months were spent just decompressing from the previous eight years. At some point we looked up and realized we had gone past getting on with and had actually gotten on with our lives.
At this writing it’s been exactly 16 months since Gabe died. People can talk about how “it gets easier with time,” but I don’t know what that means. Living is easier, perhaps, in that one re-establishes routines, or that one’s emotions aren’t so volatile. Certainly I don’t find myself crying so much anymore. But I don’t need to cry to miss my boy, or to mourn not only his death but also the way his life was ravaged. Mostly, though, it’s not even sadness that preoccupies me, although I miss him all the time — understand, I mean that literally: I am missing him all the time I am awake and much of the time I am asleep — but rather something quieter and more perplexing. It’s that I can’t get my mind around it. Where did he go? How could he be gone? How come I can feel his presence, his dynamism, within me, but I can’t lay eyes on him, can’t put my arms around him? How could he be dead? Who allowed that to happen? How was he given into my care, and why was I to be tortured by not being able to care for him successfully? What cosmic felony did I commit to deserve that?
And who was he, really? Who was this being that I thought, all those years, was just a boy, yet who understood at 7, at 10, at 14, what most of us can go the better part of a century without ever figuring out — that you live now or you never live at all; that only by accepting the fact that death is on your shoulder every moment of your life can you ever fully become alive; that heartache and physical agony are nothing compared with the abject joy of being alive moment by precious moment? Who sent him here to get that point across to the rest of us? How did he know?
How am I supposed to be a father, a husband, a friend, a guy, now, when I don’t understand anything anymore? How am I supposed to “know how to live”? When I laugh, am I being insufficiently grief-stricken? When I cry, am I not trying hard enough to get on with my life? What do I owe Gabe now? What do I owe myself? My wife? My children? The world?
Where did he go? What’s his new number? When can I see him again?
That’s my exasperated, existentialist side. There is also my regular-Joe side, the don’t-brood-over-what-you-can’t-do-nothin’-about side. That part of me realizes I still have a wife and children to love, good work to do, adventures to seek, fun to share.
Years ago, when our kids were babies and nothing bad was ever going to happen, I was a pie-eyed optimist. I believed that if you thought good thoughts and were a kind, happy person, you would have a merciful, happy life. Sure, we didn’t have a pot to piss in or a window to throw it through, but we had love and every reason on earth to be happy, so therefore we had it licked.
Then I found out how hard and how shitty life can be, for no good reason. I did not, in fact, commit any cosmic felony; nor did Michelle, nor Gabe, nor Jessamine or Peter. The bad stuff happened for no reason at all. Just like the good stuff. The sun doesn’t shine every day because we earned it, and thousands don’t die every week in floods or car crashes or wars or from sickness because they don’t deserve to live longer. There have been times when I’m so pissed off that my son got such a raw deal that I want to slug somebody. But then I’ve thought, Gabe wasn’t mad about it, so why should I be?
In fact, all the way around, I’m not as mad as I used to be. I’ve stared down the worst monster in my imagination, felt his hot breath on my face, and having been through that, it takes a lot to get me agitated. Most stuff I used to get excited about now seems pretty lame. I hardly ever yell at my kids. Political scandals, imbroglios in the community, everyday examples of human stupidity: They sadden me, but I try to remember to pray for every being’s highest perfect enlightenment and to work toward that end, rather than feed my ire as I might have done before. The one thing I want most of all, I can never have, so what good would it do me to agitate myself and those around me? All I care about now is trying to be a good person. Stay awake, be helpful, teach my children to be kind and loving. That’s enough. Otherwise, I’m just causing more suffering, and after what we’ve been through how could I live with that?