In 1981, 3-year-old Damien Reed Kovarik was a very sick little boy. The diagnosis: leukemia. Today, Damien is a healthy 9-year-old. This is the story of one family’s fortitude, and a miracle of modern medicine.
This story orginally appeared in the January 1988 issue of Memphis magazine.
On the afternoon of the last Friday in September, 1981, Jim Kovarik was at home on his farm in Cobden, Illinois, packing for a three-day canoe trip. The weather was fine – bright, cool, crisp – and Jim was looking forward to getting away with a few buddies for a leisurely excursion on nearby Cedar Lake, where the trees around the shoreline were just beginning to blaze with fall color.
Jim and his wife, Paula, along with a number of other young couples, had settled in Cobden eight years earlier, buying ten acres of land there with the intention, as Jim puts it now, of “doing it naturally” — building their own home, growing their own vegetables, raising their children in an unspoiled, pastoral environment. Lately Jim had also been working construction jobs, when he could get them, to help ends meet. And Paula had been taking classes at Southern Illinois University in nearby Carbondale, completing work for her degree in ggraphic design. As a result, their 3-year-old son, a dimple-cheeked toddler with a mop of golden curls, had been spending part of his time in day care at Rainbow’s End Preschool.
It was the day care teacher's report that Damien had been taking three-hour naps — while the other children played noisily and rambunctiously all around him — that pompted Paula to decide, on this particular Friday afternoon, that a trip to the family practice clinic at memorial Hospital of Carbondale was in order. Damien wasn’t actually due for his regular check-up at the clinic until the following Tuesday, but Paula was a little worried about him. She too had noticed that he’d seemed unusually tired and lethargic lately, often taking two naps a day, and sometimes even three. And he’d been complaining that his legs hurt, begging his parents to “pick me up, pick me up” on walks around their farm. In addition, he’d had what seemed like a constant case of the sniffles for the past few weeks, and his eyes had looked rather puffy as well. Perhaps most puzzling of all, he had experienced some strange “phantom fevers,” fevers which appeared suddenly, usually in the late afternoon, and then disappeared just as suddenly, with no other symptoms of illness.
Taken separately, none of Damien’s symptoms was unduly alarming. Paula suspected, in fact, that his puffy eyes and runny nose were simply due to the allergies that had plagued the child since infancy; this was September after all, the height of the hay fever season. Still, Damien’s general malaise was worrisome. And so, at three o’clock on that golden Friday afternoon in September, 1981, while Jim headed to the lake, Paula picked up their son from day care and headed over to the clinic. Something about Damien, she though uneasily, was not quite right.
Dr. Steve Nagel knew at a glance that something about Damien was not right, and when Paula told him about Damien’s phantom fevers, and his leg pain, and his sleepiness, Nagel issued a quick order: “Lets get a blood test.” Paula asked the doctor what he thought the trouble might be. “Well,” he replied, measuring his words carefully, “it could be a virus, or it could be mononeucleosis.” Then came the kicker: “Or it could be leukemia.”
“I was just stupefied, stunned,” Paula recalls. “I just sort of went cold.” She called her friend Barb Temple-Thurston, whose husband Peter was supposed to go on the canoe trip with Jim. “Something’s wrong with Damien, and I’m at the hospital,” she told Barb. “Go find Jim.” Hoping that Peter had not left for the lake yet, Barb dialed his number at work — and caught him just as he was walking out the door. She relayed Paula’s message, and then left to join Paula at the hospital.
It was nearly 7 p.m. by the time Jim got to the hospital. All he knew was what Peter had told him: “Something’s wrong with Damien, and you have to go back to town.” Walking through the hospital parking lot, he ran into Barb whose demeanor did anything but put him at ease: She started crying the minute she saw him.
“What’s wrong?” Jim asked her, growing more alarmed by the minute.
“I can’t say,” Barb replied. “Just go on up there.”
Rushing upstairs, Jim found Damien lying in a crib-like hospital bed, hooked up to an IV, and Paula looking, as he puts it now, “sort of frazzled.” Just as Paula was about to brief him on the afternoon’s developments, Dr. Nagel came in and said he wanted to talk to both of them. Leading them down the hall into a little playroom, he sat down with them and quietly gave them the bad news: Damien did indeed have leukemia. “It was all terribly unreal,” Jim recalls. “I felt like I was on tv, and [like] this was a soap opera. I felt like I was watching something happen to someone else.” Adds Paula: “Neither of us really cried or stormed. There was just sort of a cold iciness, sort of a nether world.”
Nagel’s first plan of action was to order a helicopter to fly Damien to Washington University’s Barnes Hospital in St Louis. But when an impending storm grounded the helicopter, the Kovariks switched modes of transportation — and destinations — in a hurry. By 8 p.m. a new plan was in the works: Damien would travel by ambulance to St. Jude Children’s Research Hospital in Memphis.
What wasn’t decided so quickly, however, was whether there would be room in the ambulance for Paula and/or Jim to go with him. Anticipating the possibility that 3-year old Damien, frightened and sick, might have to travel to St Jude without his parents, a nurse at the Carbondale hospital handed Paula two sheets of lined, yellow paper and suggested that she “write things about Damien.” Numb, reeling from the events of the past few hours, Paula scribbled everything she could think of that would introduce her son to the staff at St Jude.
“Damien Reed Kovarik,” she wrote, “D.R. for short. Mom calls him Booga. He has a cat named Mitchell that he’s real fond of; he also has a big black dog named Icarus …. He likes to eat carrots, toast and jelly, milk, hot dogs, apples, bananas, and plums. Tomatoes, sometimes…. His grandma and grandpa live in Chicago, were he recently visited…. He can say his ABCs and count to ten. [Favorite] tv programs – Sesame Street, Muppets, Captain Kangaroo… he likes to cuddle soft toys with blankets….”
As it turned out, there was room for one parent in the ambulance after all, so Paula accompanied Damien on the three-and-a-half-hour trip to Memphis, while Jim rushed home to throw some clothes for the three of them into a suitcase and arrange for someone to care for their pets. He would follow later in another car — as soon as he could borrow one; his own car, a 1968 Chevy, was too unreliable to make the trip.
It was nearly 1 a.m. when the ambulance set out, lights and siren going full blast. “Damien was sleeping,” Paula recalls, “but I couldn’t sleep.” Ironically about halfway between Carbondale and Memphis they passed a road called “St Jude.” The coincidence apparently confused the driver, because he stopped the ambulance and got out his map. After puzzling over it for a few minutes, he began looking intently through the widows, turning this way and that to survey the dark empty countryside that surrounded them. “Nope,” he concluded finally, “this isn’t it.”
“It’s funny now,” Paula says, chuckling at the memory. “But back there in the dark, in the middle of nowhere, in an ambulance, it wasn’t so funny.”
They arrived at the real St. Jude at 4:30 a.m. It had been just 13 hours since Paula had walked into the Memorial Hospital of Carbondale, holding little Damien by the hand, 13 hours in which Damien’s world — and hers and Jim’s — had turned upside down. Their world would remain topsy-turvy for many months to come, as they gradually came to understand the full dimensions of Damien’s disease, amd learned to cope with the powerful medical arsenal that would be used to try to prevent that disease from taking his life.
For now, though, it was enogh for Paula to know that they had arrived at a place where they could get help. Trailing along behind Damien’s stretcher as he was wheeled through St. Jude’s emergency entrance, she remembers looking up and seeing two nurses and a doctor waiting to greet ther. “Oh, Finally,” she thought with relief, “something’s going to be done.”
Looking down on Damien as he lay on an examining table at St. Jude on that Saturday morning back in September 1981, Dr. Judith Ochs, a pediatric hematologist-oncologist (children’s doctor who specializes in diseases of the blood and in tumors), saw a child whose medical history and physical signs were typical of the 120 or so new patients who are brought to St. Jude for treatment of leukemia each year. (The hospital also handles some 280 new patients annually with other catastrophic illnesses.) His skin was pale, his bones were tender, his lymph nodes were swollen, his spleen and liver enlarged, and he had a one-month history of fatigue and sleepiness. He also had a fever, which is why he had been admitted as an in-patient upon his arrival at St. Jude earlier that morning, and started on intravenous (IV) antibiotics.
Damien’s blood counts upon admission were indicative of leukemia: his hemoglobin, the substance in red blood cells that give them their red color and ability to carry oxygen, was low; his white blood-cell count was high; and his platelets, the cells that enable the blood to clot properly, were very low — only 11,000, compared to a normal count in the 200,000 range.
A bone marrow aspiration and spinal tap confirmed the diagnosis: acute lymphoblastic (or lymphocytic) leukemia, A.L.L. for short. Without treatment, Dr. Ochs knew, Damien would be dead within three months.
But with treatment, thanks to the research conducted by St Jude and at other cancer centers around the world ove the past 15 to 20 years, Damien had a chance — not just to have his life extended by a few years , but actually to be cured.
It was time for a conference with Damien’s parents to lay out the best course of action.
Prednisone … methotrexate ... mercaptupurine … side effects … radiation. Paula was trying to concentrate on what Dr. Ochs was saying, but it was all so complicated, and she was exhausted, disoriented. Twenty-four hours earlier she had been at home in Cobden, Illinois, looking forward to a pleasant fall weekend. Now, after a sleepless night, still dressed in the same clothes she had put on the previous morning, she was sitting with Jim in a conference room at St. Jude Children’s Research Hospital in Memphis, Tennessee, listening to a doctor describe — in grim detail — a program of drug therapy (chemotherapy) and radiation that was apparently the only hope of keeping their only child alive.
Dr. Ochs had already explained that ALL — cancer of the white blood cells — is the most common form of childhood cancer, and that doctors don’t know what causes it, or how to prevent it. What they do know, she had said, is that the disease starts in the bone marrow where abnormal white blood cells, called lymphoblasts, began to multiply rapidly and crowd out the normal cells; that most often the children who develop it are between two and eight years old; that slightly more boys get it that girls; and that it strikes white children more often than black children. Damien’s case was “typical” in these respects, he was considered as part of the “standard risk” group. His chance of a “cure” — of surviving six years or longer with no evidence of leukemia in his body — were, according to Dr. Ochs, about 50/50.
Paula looked down at the two-page typewritten document Judith Ochs had given them — a paper titled “Summary Statement for Total Therapy, Study X — Standard Risk” — which outlined the two-and-a-half-year treatment program Damien would have to undergo, mostly as an out-patient. Skipping over the unfamiliar, difficult-to-pronounce driug names — vincristine, mercaptupurine, cyclophosphamide, adriamycin — Paula’s eyes zeroed in on the words “possible side effects.” Listed as the possible side effects of just the first combination of drugs Damien would receive were hair loss, increased appetite, weight gain, nausea, constipation, allergic reactions, inflammation at the site of injections, liver dysfunction, bleeding, elevation of blood sugar, increase in blood pressure, and decreased defenses against infection. Reading on, she discovered that as the treatment progressed he might also suffer diarrhea, loss of appetite, mouth ulcers, or highly unlikely, but still a possibility — bleeding into the urine, paralysis, or even cardiac failure. And those were the short-term side effects. The Kovariks were also told that Damien might also experience some long-term effects from the chemotherapy and radiation — specifically growth problems, learning difficulties, and impaired motor control.
Confronting all this for the first time makes for “a very hard day for the parents,” Dr. Judith Ochs acknowledges sympathetically. A tall, slim brunette whose youthful good looks often come as a surprise to parents who expect a cancer specialist to look more like Marcus Welby, Ochs was only 34 when she first met Damien and his parents back in 1981. A graduate of Temple University Medical School in Philadelphia, she had joined the staff of St. Jude four years earlier.
“Most parents say we are pretty blunt,” Ochs continues. “We teach them about leukemia, and we teach them about leukemia therapy. This is such a difficult situation sometimes, and what you are dealing with is literally life and death. And they need to know. It’s not easy to stand by and watch a bone marrow [aspiration] or spinal tap, and what you have to keep in mind is why you are doing it. The only way I think a parent can get through this is to say to themselves that they’re doing what is best, that it’s something that has to be done, that there’s a possibility for a cure.”
For Paula and Jim, that was the magic word — “cure.” Pinning their hopes and prayers on it , Paula signed her name on the bottom of the Summary Statement, authorizing St. Jude to begin a program of therapy for Damien that the U.S government still characterizes as “experimental.”
Damien remained hospitalized at St. Jude for two weeks. During that time he received blood transfusions and antibiotics, as well as his first doses of the three induction phase drugs — prednisone, vincristine, and aspariginase — which, when given in combination, are successful in inducing remission (absence of any evidence of the disease) in more that 90 percent of all leukemia patients within the first four to six weeks. Meanwhile, Jim and Paula, who had no healthcare insurance whatsoever and practically no savings, were discovering what it meant to be part of the St. Jude “family.”
“On our very first day there,” Jim recalls, “they said, ‘Here’s your pass, here’s your holiday meal tickets. Go to the Holiday Inn [at the Medical Center]; there’s a room ready for you, free of charge.” The Kovariks were told they could eat their meals at the Holiday Inn, where the cost would be covered by St. Jude, or they could get a voucher from the hospital which would pay for their meals at certain other local restaurants. (They could also opt for one of them to stay at the hospital with Damien, sleeping in a room adjoining his.) Most surprising of all, they were informed that all of Damien’s hospital, doctor, and pharmacy costs — a pile of bills that would eventually total nearly $50,000 — would be covered by St. Jude for the duration of his treatment there. Even incidentals and travel money were provided. On the morning Damien was to leave St. Jude for the first time, for example, the Kovariks asked a clerk there if she could cash a check for them. The woman asked them to wait a minute, then disappeared into another room. When she came back, she had an envelope in her hand. “We can’t cash your check,” she said, “but we can give you cash.” Paula explained that all they wanted was money to buy gas for the trip home. The woman smiled and handed them the envelope, which had about $30 in it. “Here’s your gas money,” she said.
Jim and Paula were overwhelmed. “For people in our situation,” Paula says, “it was a godsend.”
By mid-October Damien was judged well enough to go home, although his parents were advised to keep him isolated, away from crowds; partly due to the leukemia, and partly as a result of the chemotherapy, his resistance to infection was practically nil. Chicken pox was especially to be feared; Paula and Jim were told that in Damien’s present condition, a simple case of that common childhood disease could be fatal to their son.
Arriving back in Cobden, the Kovariks found their house festooned with crepe paper and “Welcome Home Damien” signs, the work of concerned neighbors and friends. They also discovered that the friends had launched a “Save Damien” fund with the proceeds of a community garage sale held while they were in Memphis. Damien was taking prednisone by mouth at this point, but a second drug, vinicristine, had to be given intravenously. Arrangements had been made for him to get the medicine once a week at the Memorial Hospital of Carbondale but his first chemotherapy treatment there turned out to be an unnerving experience all around.
“Damien was somewhat of a celebrity at the local hospital,” Jim recalls, “His was the first case [of leukemia] they had discovered themselves. So here comes the hospital administrator down — the top dog at the hospital — and all these doctors are in the room. And then the administrator says, ‘Okay, we’ve got this drug, and I’m going to administer it. ‘So he tries a vein — and misses. He tries another vein, and misses again. Then another doctor tries in both feet, and he misses. Finally the administrator says, ‘Don’t we have a hot-shot anywhere?’ Someone says, ‘Oh, yeah, up in pediatrics, nurse so-and-so. She’s real good.’ So they call for nurse so-and-so, she comes down, and she gets all mad at them for not calling her right away. And she finally gets the needle into a vein in his hand.”
“It was five [needle] sticks to get one dose of medicine in him,” Jim says now, shaking his head at the memory of his son being used as a pin cushion. “In two-and-a-half years at St. Jude the people who did the tests on Damien and administered the medicine never missed a vein. Not Once.”
Two weeks later Paula brought Damien back to Memphis for a check-up at St Jude. It was October 26th, just 31 days since they learned that Damien had leukemia. Following a routine that would become all too familiar over the next two-and-a-half years, Damien had blood dreawn from his arm for a battery of blood-chemistry tests, and then Dr. Ochs performed two procedures on him: aspinal tap and a bone marrow aspiration. “Bone marrows, I think, are the most nightmarish thing to go through,” says Paula, shuddering even now at the memory of her son screaming through the painful procedure, which involves inserting a long needle into the hip bone to suck out some marrow. “The first time, when he was diagnosed, they had to do it more than one, because the bone marrow was so impacted [with leukemia cells], they couldn’t draw the cells out. I think that was when it really hit me that this was really an awful thing, that my baby was going to have to go through awful things. But he came through like a trouper.”
This time Damien also came through with flying colors. For a change, Dr. Ochs was able to deliver good news: there was no evidence of leukemia cells in Damien’s blood, spinal fluid, or bone marrow. His leukemia was in remission.
It was not, however, gone for good. Dr Ochs knew it was possible — indeed probable — that some leukemia cells were still lurking in Damien’s central nervous system (even though they couldn’t be detected), and that without further treatmentthe risk of a relapse was 50-70 percent. And so Damien and his parents embarked on the second phase of his therapy at St Jude, a two-and-a-half-week period during which he received five injections of the drug methotrexate in his spine, plus daily doses of radiation. Jim and Paula remember the radiation treatments as if they were administered yesterday. “The technicians would strap Damien down on a table and mark little spots on his head with Magic Markers,” Jim recalls, “and they’d block the rest of his body off with lead sheets. Then they’d say, ‘Okay now hold very still, Damien, here we go, and they’d push the button. And we’d just wait…” Adds Paula: “…and think about all that radiation aimed at his head.”
As expected, Damien’s hair fell out from the radiation. “It came out in clumps,” recalls Paula. “In the morning, his pillow would be covered with hair. But he was very young. It never bothered him.” What did bother him — and Jim and Paula of course — was the nausea. “We were staying in the hotel [Holiday Inn Medical Center] at that point,” Paula recalls. “I remember we’d ask the maids for several sets of sheets.”
Damien was able to go back home to Cobden again on November the 12th, the week before Thanksgiving. Still in remission, he had graduated to the third and final phase of his treatment — “maintenance.” From then on, for a period of 120 weeks — two and a half years – he would take several different pairs of anti-cancer drugs, mostly by mouth, plus antibiotics to ward off a particular type of pneumonia associated with low immunity. “We got to the point that we had a whole shelf in our refrigerator devoted to D.R.’s medicines,” says Jim. The drugs would be given on a rotating basis, in an effort to keep his leukemia from becoming resistant to any one drug. The aim, of course, was to prevent a relapse by destroying any remaining leukemia cells that might still be hiding in his bone marrow, or anywhere else in his body.
Thus commenced a series of trips from Cobden to Memphis and back again, so Damien could keep his regular appointments at St. Jude. “It took us about three trips,” says Paula, “to realize that we were not going to be able to do this.” Paula and Jim had occasionally talked about moving from Cobden even before Damien had become ill — possibly to Baltimore. Now, with Damien being treated at St. Jude, Memphis seemed like a better choice.
As luck would have it, Paula and Jim had a friend from college who knew someone in Memphis: WREC sportscaster Dave Woloshin, who had also gone to Southern Illinois University. The friend phoned Woloshin and told him to expect a call from Paula. “So,” says Paula, “I got my portfolio and a suit, and my calendar, and came down here and knocked on Dave Woloshin’s door — a complete stranger! — and said, ‘I need to find a job in Memphis. Can I stay at your apartment?” She stayed for four or five days, eventually lining up a job with the Ron Huffman Group, a local advertising agency, and finding a duplex to rent in Midtown. Then Paula returned to Cobden to help Jim pack. At that point, however, Daimen had an asthma attack, so she hurried back to Memphis with him so that he could be treated at St Jude. The Kovariks finally moved to Memphis a few weeks later. (Damien continued to be plagued by asthma during the entire time he was under treatment for leukemia. In fact, of the total of five weeks he spent in the hospital during those years, only the initial two-week stay was directly related to his leukemia; the other three weeks were for treatment of severe asthma attacks.)
Eventually, the Kovariks say, it all fell into a routine — the pills, the side effects, the blood tests, the long mornings spent sitting around St. Jude waiting for test results or chemotherapy. Two things, however, they never grew accustomed to: the spinal taps and bone marrow aspirations. “We adopted a policy of saying [to Damien], ‘Yeah, they’re going to do it. Get ready for it,” Jim recalls. “But he knew, anyway. There was a certain cart that had all the supplies. If he saw that cart he knew.” Adds paula: “We’d hear that cart coming and he’d scream bloody murder — primal screams. And you’d want to scream right with him.”
The worst medicine Damien had to take was a drug called VM–26, which was administered intravenously about nine months into the “maintenance” phase of his therapy. Damien received nine doses of VM–26 over an 18-week period, and each time he’d become violently sick to his stomach for six to eight hours afterward. “I felt so sorry for him,” Jim recalls. “You’d sit there and you just knew he had to go through that. There was nothing you could do but just do it.”
“He knew it was the one that was going to make him throw up,” adds Paula, “but he’s always been a real trouper. He’d throw up and then say, ‘Can we play a game, Mom?” It was a way of life — that’s the way life was. And he always sort of bounced right back. He’d be sick for eight hours — throwing up, dry heaves, and all that — and then at the end of the eighth hour it was all over and he’d say, ‘Can I eat now?”
“A lot of people have asked me that question, ‘How did you handle it?’ “ Paula continues. “And really, I think that one of the things that I learned about it is that there is only so much you can do. You have to say to yourself. ‘Okay, this is the problem, and this is how they say it can be solved. So instead of getting worried or upset and angry and emotional about the problem, let’s take Step One and see what that does. And then we have a new problem, so let’s take Step One of that.’ And I think that's what really carried me through more than anything else, because they always gave us the steps. And basically we were doing what we could do.”
In a curious way, Paula says, Damien’s illness was more difficult for their friends and relatives to handle than it was for her and Jim. “We knew that Damien was in the best possible hands,” she explains, “but they didn’t know that, didn’t see that every day. So their way of dealing with it was to treat Damien in many ways with kid gloves. They were afraid — you know, ‘Do I touch him? Can I bring my kid over to play with him? What if they fight and there’s blood?’ We really did make an effort to to make Damien and all of our friends believe that he was a real kid — that , yeah, he’s going to falll down and scrape his knee, and yeah it's going to bleed, and he’s going to be fine. He has not been treated like a kid in a glass bubble. To us, he’s always been just a normal kid.”
Through it all, however, the Kovariks lived with a constant undercurrent of fear. Damien was in remission, but would he stay in remission? Judith Ochs had explained to the Kovariks on their very first day at St. Jude that if Damien relapsed while on therapy, it would mean that his leukemia, in all likelihood, could not be cured. And so they waited. And worried. And stood by helplessly as other children they came to know at St. Jude failed to do as well as Damien. “There was this one particular kid named Jeffrey,” Jim recalls. “He and Damien were the same age. He was from Florida. He’d fly in, and they had the same Tuesday appointment. They were on the same schedule of medicines, taking them the same way and everything. It turned out little Jeffrey relapsed three times and eventually died. There was no reason for one of them to make it and the other one not. That’s just the way it happened.”
Paula grimaces as she recalls what it was like to live with that threat of relapse hanging constantly over their heads. “Every time we would go in for tests, every time blood was taken, every time there was some new test to be done, there was a worry, a heartsickness,” she says softly. “One of the routines of St. Jude is sitting in the waiting room, waiting for your test results. And they’d call your name, and you’d go trooping down to B Section or whatever, and I remember many times seeing Dr. Ochs coming down that hallway toward me making a thumbs-up sign. That relief — we’ve done it again, he’s okay still — was really wonderful.”
In March 1984, Damien, by then 6 years old, reached the end of his treatment. Before going off chemotherapy, he had to endure the usual series of tests — blood tests, spinal tap, and bone marrow aspiration — plus one more unpleasant medical procedure: a testicular biopsy, which was performed (under anesthesia at St. Joseph Hospital) to make sure there were no leukemia cells in his testicles, a common hiding spot for leukemia in boys. After the biopsy had been completed, Dr. Ochs, grinning from ear to ear, raced down the hall to sound the “All Clear.” Damien’s body, as far as anyone could tell, was totally free of leukemia. It was safe to take him off chemotherapy.
To the uninitiated, this would seem to be an occasion for rejoicing. And for most parents of leukemia patients, it is. But it's also an “extremely stressful” occasion, says Dr. Ochs, because suddenly — after more than two years of treatment — nothing is being done any more to fight the leukemia. “It’s the day we take their security blanket away,” she explains. “We say, ‘Okay, no more chemotherapy. Now we’re just going to wait and see what’s happened. Because the die is cast. You are, or you are not, cured of leukemia.”
Jim and Paula were told Damien now had a 90 percent chance of being cured. The odds were reassuring, to be sure. Even so, they knew that for each individual family, the answer boils down to yes or no. There ws security in the numbers — more than they’d had in the past two years — but there was still no substitute for waiting it out.
Three-and-a-half years later, on a chilly night in late November, 1987, Paula and Jim are relaxing over an after-dinner cup of coffee in their comfortable home in Midtown, rehashing for a visitor the story of Damien’s battle with leukemia. Paula, now 34, operates her own graphic design business these days and is expecting the couple’s second child in the spring. Jim, 37, works as a research associate in the department of anthropology at Memphis State; he also puts out the program guide for WEVL radio, serves as president of the Peabody Elementary PTA, and participates in enough other community activities to keep him busy every night of the week. Damien, a friendly, spunky 9-year-old clad in jeans and a blue-and-white button-down shirt, wanders in and out of the room during the conversation, whistling softly and muching on a Dove Bar, by turns fascinated and bored with the details of the illness he had, as he puts it, “when I was a child.”
It's hard to know how much Damien remembers about his illness, and how much he thinks he remembers because he’s heard the story repeated so many times. When his father describes the nightmarish ordeal of having spinal taps and bone marrow aspitations, Damien gets down on the floor and cheerfully demonstrates the doubled-over, head-to-knees position he had to assume for the procedures to be done. Yet he seems to have forgotten the pain that accompanied the experience; he talks of the ordeal casually, matter-of-factly, making less of a commotion about the whole thing than most kids would make over a tetanus shot.
“My son taught me a lot about courage,” say Paula. “He’s gone through hell with medications and it doesn’t seem to have bothered him. He can swallow eight pills at a time. He sees a needle and goes, ‘Okay, where do you want to stick it?’ He’s very casual about medicine and hospitals and doctors, very comfortable with that situation. He’s grown up with it. But he’s never asked any questions like, ‘Well, what is this thing leukemia?'”
“\I really don’t think he has too many memories,” she continues. “He doesn’t recall the pain, he doesn’t recall the nausea, he doesn’t even recall Jeffery. When we talk about it, it’s like it’s separate, this life that he had. I really wonder when, or if, or why it will surface for him.”
For Jim and Paula, however, the memories are never far below the surface — and they bubble up again every time Damien returns to St. Jude for his annual check-up (which to everyone’s relief, involves no “procedures”). Not surprising, the specter of leukemia also haunts them every time Damien gets sick. And nowadays, they have yet another worry to keep them up nights: AIDS. Jim and Paula received a letter from a St. Jude telling them that Damien will be tested for the AIDS virus on his next visit to the clinic, since he received blood transfusions after the epidemic began in the United States, but before the blood test for AIDS was in use. Dr. Ochs has assured them that the likelihood of Damien’s testing positive for AIDS is remote, that St. Jude, in fact, has not discovered a single instance of the AIDS virus among their leukemia patients. Still, it’s one more thing to worry about.
On the other hand, a few things that they had been concerned about — the possibilies, for example, that Damien’s growth might be stunted or that he’d experience learning difficulties — have so far not panned out. At his last check-up, Damien was in the 6oth percentile for his age on the growth chart, and his report cards, his parents note proudly, are sprinkled liberally with A’s and B’s.
Indeed, things seem pretty normal at the Kovarik household these days. Paula and Jim say Damien’s ordeal has drawn the family closer together, and that they’ve all learned to appreciate the wonders of life, to cherish every moment. Nevertheless, they admit, the longer Damien stays in remission, the easier it is to get caught up in the minutiae of everyday living, and to put Damien’s illness behind them.
Until, that is, they go to a party, or meet someone new at work, or strike up a conversation with a new neighbor who says, “Tell me, how did you end up in Memphis?”
At that point, says Jim, it all comes rushing back. “Well,” he replies, “that’s a very long story….”