Central Arkansas venues have a full week of commemorative events planned
EDITOR’S NOTE: Renan Antunes de Oliveira is a Brazilian journalist who spent time in Little Rock with his friend, a patient at the Myeloma Institute for Research and Therapy at the University of Arkansas for Medical Sciences.
A bunch of Brazilians came from Porto Alegre to Little Rock in search of a miracle. While here, each and every one also pretended to have fun. Their main goal in the unfolding drama was to cheer up one of their group, Daniel.
He was carrying a mortal multiple myeloma, a rare cancer that catches 15,000 Americans a year, killing most of them within months.
Daniel Koslowsky Herz was looking for a cure not promised anywhere else in world except by this particular cutting-edge hospital in Little Rock, at the University of Arkansas for Medical Sciences. If the Walton family, one of the richest on earth, had built the myeloma center to treat one of theirs, where else would Daniel, a 51-year-old writer, find a better place to shop for his own miracle?
Being Jew and agnostic, a true believer in pure science, Daniel didn’t expect a divine miracle. Since he was first diagnosed with that damn MM in 2000, in Porto Alegre, he never had any thoughts of finding a cure unless doctors could explain to him all the steps in the treatment.
Yet he may have a place in the Guiness Book for his six bone marrow transplants that took place between January 2001 and last March. He was the perfect guinea pig for all the new treatments envisioned by doctors at the Myeloma Institute for Research and Therapy — a brave, willing, and above all, self-pay patient.
He knew that the miracle would be expensive. Daniel spent almost $1 million per year of treatment, with prices itemized to the last Band-Aid. He was never past due on a single medical bill.
Daniel first looked for free treatment in his native country. Let’s forgive a Brazilian doctor who once prescribed Tylenol for what he thought it was a minor ache during the time Daniel was recovering from his third transplant. An air ambulance took a comatose Danny from Brazil to UAMS in the nick of time.
How did he get to Little Rock in the first place? It was a scouting trip to New York that helped him to select Arkansas and UAMS as the ground for the miracle. Who gave him the map? It was a sweet young lady from this Natural State, then a resident physician at a Manhattan ER.
She had the looks of Cameron Diaz and was as gentle as possible while treating Danny for a bout of hemorrhoids. In a soft-spoken, matter-of-fact tone of voice: “Myeloma? Go to Little Rock. Best in the world.” His only answer was a muttered, painful, “hummmm.”
The Internet confirmed her piece of advice. So, the first Brazilian miracle seekers came in January 2001, full of hope. Danny, wife Celia, children Guilherme and Ada, then 9 and 6. They set anchor at Embassy Suites for their first six months in Little Rock, a city five times smaller than Porto Alegre (the name translates to Happy Port and the city is located at southern tip of Brazil).
After them, in a five-year span, a string of friends and relatives came. In his troupe there was also a Mexican and a Honduran, enlisted as caregivers.
Daniel loved to tell friends about his first encounter with Dr. Bart Balogie. He’d entered Olimpo to find Zeus clad in a Harley-Davidson leather jacket. He later described that moment as if he had been enlightened.
He had finally met and touched the man who is conducting pioneering research on myeloma! If someone in the world could give a new life to the ones almost killed by myeloma, Barlogie was the man. There was little doubt left — especially because BB had a self-confident persona at all times.
Beyond that, the two men seemed to have formed an instant friendship. After a few days looking at Danny’s lab results, BB made a promise. Daniel knew very well that it was just a promise and that BB could only try to “fiercely attack and beat the disease.” This was BB’s mantra, but not a guarantee.
Immediate action was taken: the Greatest Doctor in the World took a sip of Daniel’s bone marrow. He filtered the portion contaminated by a certain “lambda free” factor, then reintroduced what was left of that beverage back into Danny’s veins. He administered a cocktail of drugs that would have given a jumpstart to Lazarus.
A small, medically controlled miracle had indeed been delivered in Little Rock. In July 2001 Daniel was sent back to Brazil, in partial remission, almost cured.
Lab results showed his “lambda free” marrow at almost zero. Price: just a little over a million dollars. A bargain for Daniel. He got two years almost worry-free, spent most of the time back in Brazil, paying occasional visits as an outpatient to UAMS. Definitely a bargain.
What is money for? Only once Danny said something that might have been a signal of doubt, asking a friend: “If I die, don’t you think that have I put good money in a bad thing, that I should have left it to my children?” But he himself answered that: “Anyway, I will leave them enough money.”
He would always indulge in fine food and drink — but beyond that he would keep a low profile. Son of a wealthy businessman, he was raised with humble manners. After graduating as a journalist, he quietly set for an independent career as a teacher at a local university.
He did well for himself. The young professor wrote a book that was an instant success. He exposed the alliance between the most influential Brazilian TV network and the military dictatorship then ruling the country.
“A História Secreta da Rede Globo” (Globo Network Secret Story) had no fireworks, just plain research, lots of documents, interviews — investigative journalism at its best.
The book, which made his name in the early ’80s, infuriated the establishment. O Globo newspaper, the flagship of Rede Globo, was forced to withhold the list of the 10 top-selling books in order to not acknowledge his work, which was on the list for weeks. Why in the heck would a son of the elite turn against the rulers?
The answer could lie with his father, from whom he seems to have inherited more than money. In his business, Walter Georg, son of a poor German immigrant, introduced a tropical version of capitalism. He paid higher wages than unions wanted. He treated workers with a respect rarely before seen in the region. In his final days, Herr Georg sold the family business to a national competitor, losing money, instead of selling it to an international conglomerate for profit.
Daniel used to joke that he was using his inheritance to buy time to live. “I already bought two or three years; if it was not for Barlogie’s methods I would be dead by now,” he later said.
His healthy life is easier to read about than his fight against myeloma. For starters, it must be said that it is an ugly disease. In its final stage, something like grapes grows out of the bones of an infected person, causing excruciating pain. When it reaches the brain, it causes seizures and ultimately kills. It can cause everything from renal failure to skin ulcers. Patients sometimes must be wrapped like a mummy. Even a simple cold can kill, so sometimes a patient is kept inside a bubble (UAMS has three bubble-like rooms).
There is no cure for myeloma. Bottom line: the shots, pills, infusions, creams, chemotherapy and one transplant after another are, in the end, as effective a cure as the magic fumes shamans give to natives in the Amazon.
Treatments, a caring staff and lots of strength from the patient himself can keep the almost-dead alive for a while — but cure is always seen as a miracle.
To survive a year or more, patients must endure tough times. Most insurance pays just for the first transplant and that is it. The second is only for the lucky who live and have the money to pay.
Besides money, Daniel had the strength required to face myeloma. It is not the kind of strength we need for the everyday business of that thing called life. He had something that moved everybody around him. In fact, he was the one who convinced the bunch of friends and relatives to wait for the miracle: “I will make it” was his mantra — if he was faking it, he never showed the extent of his fear.
To be on solid ground he read every single note, memo or report about myeloma, reaching the point of lecturing his many doctors, except Barlogie.
In August 2005, Barlogie began to run out of tricks. After four transplants — all from his own bone marrow, kept frozen for years, while he was traveling back and forth to Porto Alegre, Daniel’s “lambda free” numbers were rising again.
Barlogie ordered his fifth transplant, using the last bag of cells. Barlogie then advised him to stay for good in Little Rock, on an outpatient basis, to be hooked every other day to an IV pole, having platelets and blood transfusions as needed — and he needed a lot.
That was when all the people around him begun to have serious fun. The Brazilian bunch conducted several shopping sprees at CompUSA, Best Buy, Linens and Things, Wal-Mart. A show at Alltel Arena? There they were. Cirque du Soleil, Rolling Stones, you name it.
Daniel would lavish his troupe with dinner at the best restaurants in town — by then he seemed to have eaten in every single one. His favorite was The Butcher Shop. Faded Rose was also on his top list, followed by Brave New Restaurant. Red Lobster got a spot, because his wife loved the biscuits. A place in Maumelle serving catfish was a family must, as was Fulin, on Sundays.
By the end of the year his daily visits to UAMS as an outpatient were more worrisome. He was having frequent bouts of fever, was on antibiotics all the time. The mammoth dose of medicine began to affect his taste. His days at restaurants were over. He was in need of a more balanced diet.
That’s when Mary Sulema entered the picture. She is Honduran, daughter of a Palestinian refugee. She was cooking at McDonald’s for $200 a week; Daniel offered $500. With her on board, life on Point West Drive, where Daniel rented a house, began to look more like Porto Alegre: breakfast at 7h30, lunch at noon, dinner at 7 p.m.
Christmas came and with it bad news. The fifth transplant had failed. Barlogie kissed Daniel, reassured him of his faith in the next — known as a MUD (from a Match Unrelated Donor). The donor would be an unknown person.
From then on even Barlogie would be in uncharted waters. Very few people survive to MUDs.
Daniel took his chances and traveled to Brazil for Christmas with his family — a cloud of fear could be felt hanging over Point West Drive.
On Jan. 10 a Brazilian doctor called UAMS to know what to do with a patient named Daniel. This gentleman had spent nine days there fighting an opportunistic infection that no one in Brazil knew the cause of.
Barlogie ordered Daniel to return to Little Rock. Another air ambulance, whose ticket cost $87,000, flew Daniel back to Little Rock.
The disease looked like it was winning the battle. But Daniel came back again full of hope. He had a wonderful time with Celia and their children. The plans: put kids in school, set up a video conference to keep running his business.
Next in line were his duties with Brazilian National Congress, since he was an appointed official overseeing media deals. Plans in the long run: Invite friends to USA to attend the World Soccer Cup via a satellite in his room.
The only thing that mattered to him while waiting for the MUD was food. He was now obsessed by nutrition, having identified a flaw in the UAMS/Barlogie approach: “It is mathematics. I must gain weight before, to lose it after the transplant.” He enlisted Mariza Ribeiro, his longtime Brazilian cook. She was granted a visa to come to the U.S. to prepare his rice and beans. Many people below the Rio Grande would kill for that visa.
Daniel’s days now were just eating days. Blanca, the Mexican, drove him to UAMS, where he had massive doses of medicine before returning to watch TV. His favorite show? Anything on the Food Channel: “I must gain weight.” He set a goal of gaining 35 pounds before the MUD, fearing that he would lose up to 45.
On Valentine’s Day he cooked a shrimp dish that would have won a blue ribbon wherever they are given to chefs. The children were dispatched to Breckenridge Cinemas and he served Celia and a couple of friends — it was superb.
Thinking about food all the time, he complained that Barlogie and his team had not paid enough attention to the issue — and began to write a paper on it.
March 7 was MUD day. RN Gwen and Dr. Kiwan delivered the cells bag to Daniel’s room, 762 of Ward Tower. It was a very simple procedure. If the donor’s bone marrow was strong enough to kill the disease, it also could reject Danny’s organs.
That is what happened at first. His liver, kidney and heart failed. For a week he clung between life and death. A few more days and all organs recovered except the kidneys. A month later he was hooked to a dialysis machine, but was doing fine. His routine of reading papers at breakfast and phone calls to Brazil resumed. The kids, now at Anthony School, were told that they would soon have the spring break — they were divided between care for their father or returning to Porto Alegre.
Now the days of his troupe revolved around him. One person would buy his favorite baguette at Community Bakery at Shackleford at 6:30 a.m., be at the hospital at 7 a.m., read the Democrat-Gazette to him and then help him take his daily massive dose of medicines and dialysis.
He would have one pill to avoid rejection, another to provoke it, one that would cause nausea, another to prevent nausea and so on. The list was two pages long; every day a doctor had to go over it, to ensure that he was having the correct dosage.
In mid-April he was strong enough to go home to Point West Drive. He sent the kids to Brazil, determined to give them a normal life. Celia flew with the children, promising to return by Mother’s Day, the second Sunday in May.
The discharge from UAMS was not a good idea. He felt all sorts of pain and discomfort, fever and tremors and had to return just 20 hours later.
Bedridden again, Daniel rediscovered some of the simplest pleasures of life: To have breakfast with a fresh, crusty baguette. The one he was having from Community Bakery, Bill Clinton’s favorite, was not good enough for him.
A scout sent for a better one found it at Boulevard Bread. The baguette. The one. The only. But the problem was that the baguette was never out of the oven before 9 a.m. — and by then Danny was knocked out by the many medicines he was having.
An envoy spoke to Scotty, the owner of Boulevard. Scotty pleaded to Tonia, or Sonia, or Sonja — the Boulevard Bread general manager. Her answer was “no way.” According to her, it was not possible to bake baguettes before the opening time (7 a.m.) due to particular characteristics of the baguette.
That will be the day. What she didn’t know is that Daniel, The Professor, had studied baguettes with the same care he gave to the myeloma subject. He then ordered his envoy to offer buying all the daily rations of baguettes, provided that they would be baked by 7 a.m. The offer was refused. He then offered $1,200 to anyone willing to bake his bread — $300 a week for seven loaves of bread. That was when people around him begun to think that he was losing control.
But he was not. From his bed, hooked to his dialysis machine, he smiled: “Is it that difficult to have a baguette in Little Rock? We can find one on every corner of Porto Alegre by 6 a.m.” Well, he had a point. His envoy was sent in one last attempt to bring to the manager to her senses. Daniel was photographed in his bed with a message to Boulevard. The photo was shown to Scotty, who ordered the manager to bake bread Thursdays and Fridays — no more questions asked.
Daniel was puzzled: “Why it is possible to have baguettes baked in two days of the week and not in the others?” But that’s the way it was.
The length of this stay in the hospital took a toll on family and friends. By then, Daniel was using the helping hands of Shanita and Nicole — two patient care technicians who took care of him during the night. They were nicknamed “sergeants” in the sense that if needed they would deliver care in a war zone.
By then, Daniel had lost some weight because the first thing a MUD attacks is the guts. He had frequent bouts of diarrhea. He felt pain in his legs. Docs scanned his body several times to find signs of myeloma rejection, but found that the disease was not being rejected, his organs were.
Yet he showed how much in control he was: “I am expecting the donor’s bone marrow to take care of the disease, it doesn’t matter how low I go.” Always rational, he also took some time to write his will.
He never complained. His belly was blackened by hundreds of shots, his mouth was dry, his fever high, his dialysis painful — but when asked how he was doing he would always answer, “Fine.” At this point he said to his wife and brother, “If my brain stops and I get hooked to a machine, let me go.”
One sunny Sunday he was taken by wheelchair to the patio. He looked as if he were devouring every ray of light. Upon returning to his room, he made a sarcastic comment: “I am lowering my expectations. Now all I want is to go home, sit down with my children on the couch and watch ‘Belissima’ ” (a TV soap opera aired by none other than Rede Globo Internacional).
For two days before Mother’s Day weekend he had his deluxe breakfast — baguettes from Boulevard. He told Blanca that she should leave the country for a week to renew her visa and avoid breaking immigration laws: “Be back soon because I will have worse days ahead.”
That same Friday night, he had a seizure. It lasted maybe 15 seconds. Three people witnessed the Big One: Blanca, sergeant Nicole and this reporter. RN Grace jumped in and took control, thus receiving the nickname “Grace under Fire.” Dr. Krishna, a young resident born in India, got so scared that he ordered an immediate CAT scan of Daniel’s brain.
He must have reported that to Barlogie — who, by the way, was nowhere to be seen during those days.
Daniel then formed a survival bond with Krishna, now the one in charge of his recovery. If the miracle would have come, it would have been in a cloud of incense.
The Monday after Mother’s Day, since there was no baguette, Daniel had a ciabatta roll with butter — but that didn’t settle well.
On Tuesday, a baguette appeared God knows how. He sat for breakfast and discussed some issues about what he would write for Congress, slowly savoring each crumb of the crusty, mysteriously baked bread.
That night he had another seizure. Krishna now began to investigate the possibility that the myeloma had reached his brain. Daniel’s skin began to get red and scars appeared in his feet out of the blue. Krishna was puzzled. He called his superiors.
They came in a herd, on Friday, May 19. Barlogie was among them. He stood against the wall for a full four minutes, then asked something about Daniel’s eyes and left.
Dr. Fritz Van Rhyee leaned over his bed: “Daniel, do you recognize me?” A murmured answer: “Dooocctoor Vannnn Rhyeeeee.” “How many fingers do you see now?” Daniel’s head couldn’t follow his hands.
The herd left after two more minutes. Krishna returned alone with a verdict: “The family must come immediately.” Someone asked: “Are you doctors throwing in the towel?” Nope. A miracle could still be expected.
Daniel spent the weekend slipping in and out of his mind — everybody bothering him, questioning “How many fingers?” Celia arrived on Monday, May 22. Doctors broke the news: He either dies today or tomorrow. It would be much better to take him out of the country before it gets too complicated to leave. It was a shocking surprise to hear from physicians those bureaucratic concerns.
No chances for the man? “1 or 2 percent. Only a miracle. … Daniel is unresponsive, his brain is deteriorating rapidly, there is nothing that we can do.”
The family called a private air ambulance to take him back to Brazil. Soaring gas prices made the ride more expensive this time: $90,000. The goal: having him dying at his place, with his people, in Porto Alegre. The Canadian crew members believed he would not survive the trip. Only a miracle can take him alive to Brazil, someone said — from doctors to pilots, everyone was in need of a miracle.
On May 23 Daniel was flown back to his native country. The last bill at UAMS was $600,000.
The flight was a nightmare. The Canadian crew landed by mistake in a car racetrack during a stop to refuel in Aruba. The local police ordered everybody out of the plane — including Daniel on his stretcher.
He arrived in Brazil at dusk on the 24th. He went to a hospital and was immediately put on a ventilator, a machine that he always dreaded to be put on. For days he didn’t say a word.
Then, at last, Daniel had his miracle. A small one. For the first time in days, he opened his eyes and talked. He muttered something to his mother and tried to speak to his daughter, Ada. People who heard his last word said that he said “Chica,” Ada’s nickname.
On May 30, at 3:15 p.m., Daniel died in Celia’s arms. She was trying to adjust his pillow when it happened. He was cremated on May 31, in Porto Alegre.
A garage sale was held in his Point West home. TVs ranging from $50 to $120 and a trampoline for $300 attracted several neighbors. The last item to be sold was Ada’s bike, for $40. His couch, big screen TV and favorite pans were shipped to his family. All Brazilians have returned to their country.