I cringe still when I recall how, a few weeks before the diagnosis, Aahren had asked me to feel a strange lump near his throat that he thought was a pulled muscle. I didn’t know it was anything but a pulled muscle, either.

How could I have been so ignorant—so unsuspecting?

Anthony DePalma is the author of Here, a Biography of the New American Continent. He is currently an international business correspondent for The New York Times, assigned to explore the increasing connections between North and South America. A former freelance writer for The New York Times Magazine, Harper’s, and the Columbia Journalism Review, he lives in New Jersey with his wife, Miriam, and their children Laura Felice, and Andres.

Their son, Aahren is a sophomore at Notre Dame.

Magazine
Fall/Winter 2001

A Man's Life
Embracing Aahren


by Anthony DePalma

Except for the suspicious hawks that eyed us as we flew by on the Indiana Turnpike, the trip could be called normal. And for all I know, it might be as normal as fireflies in a jar for Indiana hawks to perch on posts while they digest their morning hunt.

My son Aahren and I had begun the drive from New Jersey the day before, and this was the final leg of our trip into South Bend, where he was to begin his second year of study at Notre Dame. On the way we had passed countless other cars tagged with decals from a catalogue worth of colleges and universities, all loaded with boxes and duffel bags, all making the same summer pilgrimage.

Like the others, we put up with long hours of highway rumble that muffled our ears and made conversation in Aahren’s Jeep a shouting match. We stopped far too often for bad food and expensive gasoline. Luckily, Aahren—whose name is pronounced conventionally like Aaron, but spelled in the unconventional spirit of the 60s—has developed a taste for the music I listened to back then. As we took turns driving we could agree on the same FM radio stations whenever the one we were tuned to dissolved into static.

It was a classic summer scene, a rite of passage and pride, and it was all perfectly, splendidly normal. We reveled in that normalcy like no other family in the vans and cars heading into America’s heartland. For while others were probably impatient with the routine, we craved the very commonness of it.
A similar trip just two years before had been anything but normal.

I HAVE TO ADMIT AT THE OUTSET HOW DIFFICULT IT IS FOR ME TO WRITE THIS. Although I’ve made my living with words for more than 25 years, I have until now been unable to summon any spirit to help me put order to what I’d felt after that first trip west in 1999. I had vowed to avoid the sentimentality that I heard myself resort to like a crutch when I desperately tried to talk about what had happened. And I refused to return to the trite, overused, pre-packaged but oh-so-handy expressions that, in the dark days, roughed up as
I was by fate, were my only recourse but silence.

Before committing to put this down on paper, I promised myself that I would give up all literary pretense and simply record what I had felt then—a fear so dark and so complete that it blocked my vision and hid all the skills I had developed over two decades in journalism. When, finally, I asked a therapist for help, she told me that of course I would find it far more difficult than any assignment I’d ever had. I was dealing with Aahren—my Aahren—and trying to explain what had happened to him. I would not be a correspondent writing about a subject, but a father writing about his son.

ON WHAT WOULD HAVE BEEN HIS FIRST DAY OF CLASSES AT NOTRE DAME in 1999, Aahren was diagnosed with acute lymphoblastic leukemia. In the clinical argot of medicine it is more commonly called juvenile leukemia or A.L.L., which struck me as viciously appropriate, since it is a disease that touches ALL aspects of our lives.

It all happened in a flash, a gunshot of a revolution that changed our lives and challenged my own concepts of what it means to be a man and a father. Aahren had just turned 18. In many ways he already was a man, ready to take the first steps into his independent adult life. Thus far, those steps had taken him only a short distance from our house and the warm comfort of childhood, where he’d always felt protected by his mother and me.

And until just a few hours before the diagnosis, we felt we had watched over him well and successfully guided him to the threshold of a wonderful life. I especially felt satisfied that, as his father, I had done just what I should have for him. I had kept him from harm while making sure he had more opportunities than I ever had.

One short conversation with the doctors seemed to have changed all that. I had not been able to protect my son, nor could I do anything now to make him better. I had to stand by while the doctors and nurses took over. To save him they had to hurt him. And all I could do was be there.

Until now, I have been too frozen by fear to reveal any of this. I feared I would lose him. I feared thinking that. I feared saying that. I’ve never written that until now, and even now doing so stings my heart.

I cringe still when I recall how, a few weeks before the diagnosis, Aahren had asked me to feel a strange lump near his throat that he thought was a pulled muscle. I didn’t know it was anything but a pulled muscle, either. When the oncologists examined Aahren they told me that the lump really was a mass of cells produced by the leukemia.

How could I have been so ignorant—so unsuspecting? But at the moment he had asked me to touch his neck he was in beautiful physical shape, with broad shoulders and a flat, hard stomach. He was working out rigorously because he intended to enter ROTC at Notre Dame that first year. He had already undergone the rudimentary physical that the university requires, and in my eyes he was indestructible. By the time we were ready to leave him after the three-day orientation for freshmen and their parents that fall, we did not even know where to find the campus infirmary.

As we neared the car, he had mentioned that his back hurt a little from sitting so much during the orientation. He expected that the pain would go away. I told Aahren something about responsibility and safe sex, surprised at how paternal I sounded. Then I reminded him of how fortunate he was and how much more he was expected to give back to the community because of that. Then my wife and I departed.

Less than 24 hours later the world we knew came apart.



Oh Holy St. Jude, apostle and martyr, great in virtue and miracle, I promise to make your name known.

There, I’ve done it. Left with no other options in the days after Aahren’s diagnosis, I had desperately grasped the faith that had been so much a part of my own upbringing as the fourth son of an Italian-American longshoreman born in the blue-collar streets of Hoboken, New Jersey. When she heard about Aahren, my sister-in-law sent the prayer and said it had worked for her. The part of it containing the quid pro quo bargain—do this for me and I’ll spread the word about you—seemed suspect at first, but that was the journalist in me thinking, not the frantic father trying everything for his son, including prayer.

The aftermath of Aahren’s diagnosis was a constant battle between intellect and emotion. I knew I couldn’t blame myself for not having protected him, but blame myself I did. I warned myself not to be superstitious or mystical, yet I took great solace in the sign I got coming out of my local church one day early in Aahren’s treatment, when the sun emerged triumphantly from beneath the dark clouds of a continuing autumn rain.

My heart still turns cold when I see the words “lukewarm,” “likewise,” or any combination of letters that, at first glance, takes on the general shape of the fearful disease Aahren is battling.

For strength, I’ve relied on Miriam, my wife, and her inextinguishable spirit. One night near that first Christmas, when Aahren's treatment was at its most sickening, and we all were at our most desperate—exhausted, afraid, and in tears—she let us cry ourselves out in Aahren's room. Then she called us all downstairs for ice cream, signaling silently but resolutely that she knew that everything would be all right.

I’ve also leaned on the shoulders of a couple of extraordinary men. One is Dr. Peter Steinherz, a specialist at Memorial Sloan Kettering Cancer Center in New York who has spent 30 years studying and defeating A.L.L. During the two years of treatment that Aahren has undergone, Dr. Steinherz has comforted us not so much with the warmth of his words as with the precision of his science. He tells us what he is going to do and how Aahren is going to react. Then he tells us when to expect things to get better. And it happens. He provides order where otherwise there is chaos.

Another strength is Rich Casparie, a friend who walked this same path with his own son, Ernie. Having fought with AL.L. before, he can brief me now on my enemy’s strategy. Ernie’s bout with the disease began 12 years ago. Now he is 16, a masterful fisherman and budding trumpeter, Rich’s best fishing buddy. A normal kid. From the beginning, Rich was certain Aahren would be normal too.

Then there is one of my oldest friends, Steve Valero, who has written, called, e-mailed or sent an instant message almost every day since those first horrifying moments. I rely on Steve to tell me not to beat myself up too much for what’s happened, and to remind me that the prognosis for Aahren’s full recovery is very good and improving all the time. The better he is, the better the odds become.

Finally, there is Aahren himself. Strong, determined, more quiet than I might want him to be but with the subdued dignity of a true hero. From the beginning, his approach to all this has “Let’s just get on with it and get it over with.” Very little complaining, never a loss of motivation. He’s taken everything the doctors have thrown at him, and more. The disappointment alone could have been crushing. He had to withdraw from the university after one day. He left behind all that we had brought out that first trip, and he said goodbye to his roommate of one day. But he vowed to come back.

After a full year of treatment he was only halfway through the regimen in September of 2000. But with Dr. Steinherz’s permission, we retraced our steps back to Notre Dame last year. I admit my heart was in my throat. Aahren had to come home once a month for chemotherapy, and during the rest of the time his resistance to infection was so lowered by the treatment that he had to stay in a single room. He was warned not to take even a sip of beer. He arrived on campus the day after a treatment and was nauseated. We again moved him into his dorm, unpacking some of the things that had been in storage at Notre Dame for a year.

Our departure that second year was more reserved than the first. We said goodbye simply, expecting to see each other in a few weeks, but mindful of what had happened the year before. We followed that same pattern all year. We’d say goodbye, pray that everything would continue to be normal, and a month later he’d come back for treatment. Then we’d say goodbye again.

THE PHALANX OF HAWKS ALONG THE INDIANA TURNPIKE this September seemed an uncertain sign, but by then one more year had passed. This time, we drove west in Aahren’s yellow Jeep. Early Sunday morning he pulled confidently in front of his dorm and I helped him unload. Two of his three roommates were asleep inside the suite that Dr. Steinherz has allowed him to move into. As I watched all the curious parents and eager first-year kids find their way around the dorm and along the paths of the campus, I couldn’t help but wonder which ones would smoothly start their university years and which ones stumble over some unforeseen and unimaginable obstacle.

When it was time to leave, he drove me to the airport, asking if I had my ticket, making sure I had everything I needed. Aahren’s chances of a full recovery and a wonderful life are excellent, and as we waited for the boarding announcement he told me of his plans to travel to Europe. He also wants to begin studying another foreign language to go with the Spanish and French he’s already mastered.

We embraced. I felt his strong back, his broad shoulders, his firm hands. There still were a few more monthly treatments remaining so I knew I’d see him again in a couple of weeks. But for us, every departure, every goodbye, now is infused with the significance that only comes from staring into the face of tragedy. We try to hide those emotions, if only because it is simply too painful to expose them every time we take leave of each other. We recognize how much chaos exists in the world, and how little control we have, but we do not speak of it. Instead, we seek what is normal, and if we don’t find it, we try to create new planes of normalcy that bring us comfort.

“Goodbye,” he said, as I headed toward my flight.

It was perfectly normal. Absolutely normal.

Splendidly normal.

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