When winning was everything
May 3, 2001
By JOE TONE
Editor-In-Chief, The Santa Clara
Stanford's Children's Hospital greeted 9-year-old D.J. Frandsen like it always did. A needle-bearing nurse to draw some blood. A cold table and bulky machinery to take a chest X-ray. Then, more needles.
A nurse stuck D.J. in the arm to hook him up to an IV while his veins hid deep below the surface of his skin, avoiding the prick of the needle like always. The last test was an intravenous pylogram, an X-ray of the urinary tract that requires a special dye to be taken intravenously to outline the image of soft tissues (because regular X-rays see only bone structures). That was it, three tests - some poking, some prodding, some pictures. TIme to go home. But before D.J. slithered off the table and back into childhood, the X-ray technician studied the image and, as casually as he might ask a patient what he had for breakfast, reacted to what he saw:
"I didn't know you had cancer again."
That summer day in 1988, hysteria was somewhat welcome for the Frandsen family. At least they felt something. Three years earlier, in the summer of 1985, they were paralyzed with disbelief. After D.J., then six, crept to the edge of a diving board at the Almaden Valley Athletic Club pool and did a flip dive that landed him square on his back, he came up sore. By the time he was back at his South San Jose home, there was blood in his urine. After hours of tests at a nearby hospital, a doctor walked D.J.'s parents outside of the crowded waiting room, sat them on a cement curb and told them their son had a childhood kidney disease called Wilms' Tumor. Their son had a coin flip's chance of living.
"It hurt quite a bit," says Dave, D.J.'s father. "At first, we gave it that, 'Why us, Why us?' But then you get over it and say, 'We gotta go on to the next step.'"
Dave Frandsen is 47 with a face made for daytime television. A coach for more than 20 years in three different sports at six different high schools and colleges, it's rare to find him without a whistle around his neck. When his oldest son was sidelined with cancer, Dave didn't take off his whistle and start holding D.J.'s hand. That's not what wins games, and to D.J. and his father, this was just one more game they weren't going to lose. "Each day seemed like a game," D.J. says. "You can't quit while you're playing."
Even D.J.'s long-time doctor, Michael Link, a pediatric oncologist at Stanford, likens D.J.'s approach to athletics. "It's like shaking off an injury," he says. "His dad just told him, 'All right son, get back in the game.' That's not usual. It's their family style."
Named after scientist Max Wilms, who first wrote about this childhood cancer in 1899, Wilms' Tumor is the result of certain kidney cells not developing properly. These cells, which are supposed to allow water, salt and waste to pass into the ureters while filtering blood back into the bloodstream, don't mature and can eventually grow out of control, forming a jumbled mass known as nephroblastoma (Wilms' Tumor). To treat the cancer, doctors first removed D.J.'s entire left kidney. Then, to kill the cancer cells that had spread into his lungs and other kidney, D.J. underwent 18 months of chemotherapy and had radiation every day for six straight weeks.
Throughout the next year and a half, D.J. did everything he could to forget his illness, even if it meant defying the orders of several nurses and doctors. He rushed through treatment and sped to soccer or basketball games, where, in between scoring goals and setting picks, he would bend over on the sidelines and throw up. "We don't want to put kids at undue risk," Link says, explaining how a blow to the back could have been very dangerous. "We encourage kids to live, but there are limitations."
But despite the sideline vomiting, his lost coordination and diminished speed, Dave and Tracey refused to let cancer stop D.J. from being an athlete. "The sports were always twofold," Dave says. "They would serve the mental and physical part, but also, they killed a lot of time. They took his mind off of things, and time flew fast because we were always going to the next soccer game or little league game or whatever. There was always something there ahead of him and he always looked forward to it, and we did to. It was a big diversion from what was actually going on."
D.J. was making progress, but his recovery hit a brick wall six months into treatment. His internal incisions began to break apart, and with no healing power, D.J.'s body couldn't stop them from bleeding. Link says the intense internal hemorrhaging is somewhat common in these patients and probably wasn't caused by a blow to the kidney during a soccer game. But he can't rule it out.
"We were in Intensive Care for six weeks," Tracey says. "(D.J.) didn't speak to us for five."
For more than a month, the kid you couldn't shut up didn't say a word. The kid you couldn't get to sit grew bedsores on his backside from being stuck in bed. The kid whose smile you couldn't slap off his face was pissed off, and he didn't want to talk about it. He remembers feeling bored and lonely, thinking it couldn't get much worse. When it was over, it could only get better. "He rallied after that," his mom says.
From there, D.J. stormed from one treatment to the next, one game to another. And after a year and a half of treatment, the 7-year-old was in remission. Ask his father how his son's bout with cancer affected him, and you'll get a coach's answer: He was a little weak, a little slower, he'll say. Not as coordinated, he'll tell you. A little smaller too. The chemo had stunted his growth, something D.J., who was supposed to be 6-foot-5 but is only 5-foot-9, admits he is bitter about. To try to heal any emotional scars, his parents sent him to a therapist, but "personality conflicts" halted the sessions. "I played games with her," D.J. says.
What on earth is wrong with these people? That's what you might ask if you watched the 1988 Frandsen family work for a while. Their 6-year-old's living on chemo, radiation and half his kidney supply, and they speed through traffic to plop him on a court where elbows to the kidney are commonplace? It sounds criminal to some, but for them, it was the only way to do it. "We tried to make him be as normal as possible in his life," Dave says, "to keep it up, and be active and have a good mental frame of mind. He was always a focused kid, but he became driven to get through the next treatment."
At six, it's more likely that D.J. was just driven to the next treatment and to the next practice in mom or dad's Sedan, never really examining goals and the best way to reach them, he admits he probably just went with the flow. "You look back and, are like, 'Oh God,'" D.J. says about the risk he was taking playing sports through treatment. "But I would have had to get pounded in the kidney. It's always a possibility. But the best way was to keep going forward."
After Wilms' Tumor almost killed their son, the family tried to erase the memories by moving into a new home, just miles away from their old one. Throw in a pool, a hoop and plenty of room for touch football, and it'd be hard for the 10-year-old not to forget he almost lost his life, right? "I thought we had conquered everything," Tracey says. "But he was ... more hostile towards people. Love was not there - no hugs."
D.J. spent the next four years catching up with classmates and teammates, and eventually, love, hugs and sleep were there. So on that summer day in 1988, hysteria was the only reaction that could follow that technician's slip of the cerebellum. The second Wilms' Tumor had attacked D.J.'s remaining kidney to the point that a transplant was impossible. Instead, doctors were forced to try an experimental surgery, and D.J. faced odds that made a coin flip's chance seem like a sure thing. Dr. Michael Harrison, the chief of pediatric surgery at San Francisco's UCSF Medical Center, performed the operation, during which he removed the kidney, opened it, radiated and shaved it to leave one third of the original organ. Then, the Frandsens could do nothing but wait. While they did, D.J.'s fraction of a kidney, one of the smallest anyone has ever lived with, sat around and waited with them, not showing any signs of life for several days while D.J. lived on dialysis. "It's like trying to push a diesel with a Volkswagen engine," Dave says. After days of waiting and praying and preparing for the worst, and moments before doctors would open D.J. up just to poke around, not having a clue what to look for, D.J.'s VW motor kicked into high gear and started pushing. "Just a little patience," Harrison told the Frandsens.
The next year for D.J. was nothing new. Through 12 months of chemotherapy, he lost some weight and all of his hair, but continued to play organized basketball and Little League. One of the biggest effects of the cancer and therapy? "He had to play minors because he was weak," Dave says. Most can't play in the Little League majors because they can't stay in front a grounder. D.J., because he was a little weak at practice from the chemo he had received hours before. It doesn't seem right, really, for the same kid to be smacked with the same cancer twice, all before he started liking girls. It seems all too right for D.J.'s mom and dad to ask, Why us? But as he continued to evade death, it became evident why him, and why his family. While other families may have survived one heavyweight bout with Wilms' Tumor, it seems few families but a coach, a stubborn soccer mom, a pissed-off jock and his little brother could have taken Wilms and his tumor behind the woodshed twice.
"If you believe you can get well," says Nancy Harazduk, the clinical director of the Center for Mind-Body Medicine in Washington D.C., "that can help you." Harazduk's organization is one of many that say attitude is everything when it comes to conquering cancer. But after treating D.J., a fiery, relentless and seemingly unbeatable kid, through his battle with this fiery, relentless and seemingly unbeatable cancer, Link is skeptical about how much D.J.'s attitude had to do with his success. "I'm unconvinced," Link says. "There are people who say attitude is everything. There are research centers devoted to it. It's very hard to prove." More likely, the doctor says, luck is to thank. Luck in contracting Wilms', a highly treatable cancer. And luck in the treatment working. But Link is also quick to point out that not anyone could have beaten Wilms' like D.J. did. "It takes a lot of guts to stay with it," Link says. "Having a good family with the willingness to push him, those things (are important)."
D.J. knows his aggressive attitude played a major role in beating cancer. "Many times friends came to say goodbye," he says. "You can't give up, even when people tell you it's done with. You have to set your mind on your own goal."
On his mental checklist of goals, there was hardly room for his name. Be alive. Check. When cancer reoccurs four years later, "you're kind of pushing the envelope," Link says. "He kept bashing on." Be a leader. Check. D.J. won the Amateur Athletic Union's scholar athlete award for overcoming adversity and spoke to a national convention in Orlando. He also spoke at a United States Olympic Committee convention, where he talked about dedication to athletes like Carl Lewis. Be an athlete. Check. D.J. played four years of tennis, cross-country and basketball at Bay Area powerhouse Bellarmine High School.
D.J. took up tennis early in high school when it was clear that his size and strength wouldn't allow him to compete on the baseball team at Bellarmine. It started as a way to keep active and stay in sports. By his senior year, he was accepting a partial tennis scholarship to Loyola Marymount University. "That's what athletics are about," says Dave, "finding something you're good at and that you like." For D.J., it was a ticket away from the memories. It was also one of the first positives he could draw from his battle with cancer. "I probably wouldn't have played tennis," he says today.
If, by some freak of all that is normal, a VW engine ever did push a diesel truck, How long could it go? That was the question Dave continued to ask while D.J. ran mile after mile, slapped backhand after backhand and grabbed rebound after rebound, all on a kidney two thirds too small. "We knew (the kidney) would eventually give out," Dave says.
After a visit to LMU, D.J. came home to San Jose in July for a couple of club tournaments to help prepare for college tennis. He was stoked. He loved LA, loved LMU, loved the prospect of getting away from San Jose. He even met a girl on his visit. "I really wanted to go to Loyola," he says.
On a 100-degree day, the tennis courts at the Courtside Tennis Club heat up like a Ricky Martin music video, so it didn't seem weird for D.J.'s feet to begin swelling out of his tennies during a match that July. "I just need some Gatorade," D.J. told his mom. "I'm just really dehydrated." So he kept pumping fluids into his system and forehands past his opponents, counting the days until he would leave for college. But at his going-away physical, D.J.'s blood work came back abnormal, and doctors determined that D.J.'s VW had finally broken down, his third of a kidney was failing. "They put him on dialysis that day," Tracey says.
But at this point, dialysis was old hat, and D.J.'s dad was scheduled to give up one of his kidneys so D.J. would be back on the courts in time for his sophomore season. Who says coaches don't look out for their players? "David was a match," Tracey says. "He had done all his tests, and passed."
D.J. had one final CAT scan that would allow doctors to move forward with the transplant. Tracey was at Leigh High School (San Jose), where she works as a counselor, when the doctor called. "I cannot even tell you how sorry I am," he told her, "But D.J. has cancer again." Right about then, it was Tracey who needed a counselor.
Maybe he should have, just a little. Perhaps a tear falling off his cheek and on to his jersey of the day would have made some of the anger and the fear fade, at least momentarily. But even this time, even when D.J. was finally old enough to understand what he was up against, that wasn't an option "I was ready to explode," he says. "But I didn't cry."
Truth is, he didn't have time to cry. Immediately, D.J. was forced to set another goal. He would do chemotherapy for six weeks, three to five times a week, to shrink the tumor that was wrapped around his failing kidney. He would lose all his hair, again. He would shrink away, again, this time to just over 80 pounds, the weight of a healthy fifth grader. Catching a fastball from Kevin, his younger brother, could nearly knock D.J. over.
This time, there were no little leaguers to take out his aggressions on, and in the months that should have been his first in sunny Southern California, D.J. became depressed, distraught and scared out of his mind.
"There were some days when I hated going to sleep," he says, "Because I didn't know if I was going to wake up."
He kept waking up, but kept feeling like he was wasting away, until he realized what he was missing. "It was my goal to get out to a sporting event," he says. So every day, he found something. A Bellarmine football game, his brother's baseball game, one of his dad's practices - anything to get out of the house. Doing that became even easier when Santa Clara basketball coach Dick Davey called and asked if D.J. wanted to help at practice. Davey knew D.J.'s father through a mutual friend and wanted to help. D.J jumped at the opportunity to be around athletes and coaches again.
"In a way, that's the reason I'm alive," he says.
D.J.'s regimen, with chemo and sports helping him get from one day to the next, finally got him to the big day, when doctors would remove the kidney and D.J. would live on dialysis. Then, finally, Dave would give up his kidney. But when they opened D.J. up, Tracey says, "All hell broke loose again."
The tumor, which doctors originally thought to be a small mass, reached from D.J.'s diaphragm to his groin, and was wrapped around the aorta, the vena ceva, and down into his legs. The cancer reached centimeters into some organs, and butted up against others, while scar tissue from previous surgeries made cutting the cancer out even more difficult. "We're in trouble," a surgeon told D.J.'s parents, who were sitting where nobody wants to sit, back in another crowded waiting room. "I can't do this."
The doctor said he could attempt to chisel the tumor off of D.J.'s insides, but it would be experimental and risky. All of a sudden, D.J.'s parents would give anything for their son to have a 50 percent chance of living. Link accompanied the surgeon to ask the Frandsens if they wanted to attempt the operation.
"I wouldn't even ask this question," Link said. "Because I know what D.J. would do. He'd go for it."
His parents didn't think twice. "That's what D.J. would do," Dave told the doctors. "He wouldn't waste away. He'd give it all he had."
For 10 1/2 hours, more than 10 specialists (most of whom were in town by chance for a medical conference at Stanford) carefully cut cancer from his veins and organs. Like they were trying to cut a bruise from a pear, doctors snipped around the cancer until they had a thin layer of normal tissue surrounding each removed mass. "It was a wild and wooly operation," Link says.
Midway through the procedure, the waiting room looked like the DMV on a Saturday afternoon: people everywhere, everyone scared as hell without a clue what to do. A priest from Bellarmine stayed and prayed with D.J.'s friends and family. "I don't know what you're doing out here," the doctor would tell them when he came out every hour or so. "But keep it up, because it's working." So they did. And it worked. "It was really a strange, surreal feeling that was in there the whole time," Dave says.
But while the recovery began smoothly, D.J.'s incisions couldn't hold up and began to bleed out while D.J. lay on the couch in the living room of his San Jose home, where he nearly died as his insides were flooded with blood again. "It was a nightmare," his mom says.
D.J. was rushed to the hospital, where he would spend 67 days, some of them in a drug-induced coma while on constant dialysis. Other days, he was on a respirator. No sneaking away for little league or select soccer. The pain made it difficult for D.J. to breathe deeply, forcing him to use a respirator to expand his lungs. But every time he went on the respirator, the doctors told his dad, the less likely he would ever be off, because while it sustains life, it can also damage the lungs beyond repair.
Late on a December night, D.J.'s nurse went to Dave. "If D.J. goes back on that respirator tomorrow morning," she told him, "he won't ever come off." But to avoid being on a respirator, D.J.'s oxygen saturation - the level of oxygen in his bloodstream - needed to be 92 percent. He was at 78. "It was the same attitude," Dave says. "We're going to get through this." Every 15 minutes, all night long, D.J. breathed hard into a spirometer (a device used to force patients to breathe deeply), forcing him to use and expand collapsed portions of his lungs and increasing his saturation. "He wouldn't let me go to sleep," D.J. says. Five hours later, at 7 a.m., when a doctor was scheduled to put him back on the respirator, his saturation was 96 percent. "From that point on," his dad says, "He made a tremendous jump."
He jumped all the way to remission, and though he missed his goal of being home by the '98 Super Bowl, by February 1, he was back. Back at Camp Frandsen (a name given to his sports-crazy house by his friends and teammates) which had added a batting cage to the attractions during his final battle. Back to school - he transferred to Santa Clara to stay close to the medical facilities where he still does blood work once a month. Back to his brother's games, his alma mater's games, and Santa Clara games, the games that had kept him alive for months. Back to his bedroom, littered with autographed shirts and balls from fellow stars who had heard he was sidelined from family friends in professional sports: John Elway, Sammy Sosa, Pete Sampras. "Stuff like that sparks you," D.J. says. "I can't let my fans down."
More than three years later, D.J. isn't letting anyone down. Doctors won't say he's ever out of the woods, because he has a history of late recurrence. "I don't know that he's in the clear," Link says. "We'll have to wait a few more years. The fact that he's alive is a phenomenon." In the meantime, D.J. just keeps surprising. "My doctors can't understand how the hell I'm doing this." Nobody can, really. D.J. keeps a busier schedule than just about any 21-year-old. He takes morning classes, and for the past two years, his fall months have been consumed by his newest passion: coaching. In two seasons as the head women's tennis coach at San Jose's Leland High School, he's 36-0 in the regular season. He also just finished his third season as the team manager for Coach Davey's basketball team, a task that consumes most of his afternoons. "If my players ever think they know hardship," Davey says, "all they have to do is look down to the end of the bench." Or the end of the couch. D.J. has lived with basketball players the past two seasons, an experience he calls "awesome."
Between practices and classes, D.J.'s busy embracing his newfound outlook on life. "You have to seize the moment," he says. "Teachers say that - 'seize the moment' - and people are like, what the (heck) is that? My outlook on life is completely different." D.J. takes several pills each day, among them are transplant rejection drugs, which he'll take for the rest of his life. Some of the drugs can make D.J. moody, but those those taking the brunt of his mood swings -- especially his girlfriend of a year and a half, 20-year-old Helen Allrich, also embrace D.J.'s healthy attitude. "He's just so happy to be alive," Helen says. He just enjoys life ... And he puts things in perspective."
Even as his life speeds away from his most dreary, frightful years, D.J. can't avoid bumping into memories around every corner he turns. He can't stop himself from going back to Bellarmine, the school that saw him in his slightest form. He can't avoid going back to his San Jose home, just a traffic jam away from Santa Clara. And he'll never escape Courtside, the tennis club where his VW finally broke down. In fact, just last November, he found himself sitting in a Courtside patio chair, exhaling every coach's cliche' he could think of while two of his players played in the Central Coast Section doubles semifinals. "(I have) no control," he says helplessly, wishing he could seep through the holes in the chain link fence in front of him and show his non-responsive players how to slam the overhead volley. But he can't. And eventually, his girls walk off the court with tears in their eyes. D.J. can do nothing but shake his head. "It's so frustrating," he says of the loss. He never did like losing much.