Burzynski Patient Alyssa A.’s Story

In 1993, when she was 5-years old, Alyssa A. was diagnosed with anaplastic ependymoma. She had surgery, radiation, and chemotherapy. As a result of conventional treatment, she had, according to her mother, no evidence of disease until January of 1997. She did, however, have slight facial paralysis damage to the pituitary gland from the treatment. The side effects of conventional treatment can be awful, make no mistake.

The tumor started growing again, and the family, according to a Riverside Press-Enterprise article from 15 February 1997, decided to forego a second surgery. By this time they had decided to go to Burzynski. According to the reporter, who was I’m sure trying to help:

Dr. Stanislaw Burzynski of Houston uses fluids that occur naturally in human blood and urine to treat cancer and the treatment reportedly has none of the side effects of chemotherapy.

By reportedly, they most likely mean, the family reported it. Burzynski’s own informed consent disclaimer (and the long record of testimony here) clearly demonstrates that the treatment can have awful side effects. According to Burzynski:


But other than that….totally safe? Not a chance. According to the same article:

Family and friends are helping [Alyssa’s family] raise the $16,000 for Alyssa’s treatment by holding a car wash and bake sale at the Harvest Christian Fellowship Church today. Right now Alyssa’s tumor is the size of a green pea. If it grows larger than 2 inches before the [they] raise the money, Alyssa will be excluded from the clinical trials, [her mother] said.

That $16,000 is likely the startup fee for the antineoplaston treatment at that time. In this article, they make no mention of the vast sums that Burzynski typically extracts from people who stay on his therapy for months. They raise $3000 in a few weeks, but then another appeal appears in the same paper of 22 Feb:

[Alyssa’s mom] said the therapy could cost as much as $40,000. The initial therapy, she said, costs $16,000 and follow­up treatments that cost $2,000 per month can run four months to one year, depending on the complexity of Alyssa’s case.

There is scant info about what happens when they go to Burzynski. What we know comes from 2 posts a cancer board hosted by MIT, after Alyssa was off treatment and had at least 2 tumors. On 23 July 1998, the Alyssa’s mother told another person looking into treatments:

Jessica, my name is […] and I have a daughter named Alyssa who has also been to the Burzynski Inst. for antineoplastons my daughter also had problems on the therapy. Alyssa had seizures and went into a coma for three days, but her tumor was shrinking in any event we discontinued that treatment.

How did this happen? We find out in a post from 1 Aug 1998:

I infused her with antineoplastons for ten months with good results. We still owe the man $98K, but after they pushed me to raise the dose of A10 to 200cc, she had seizures and we almost lost her. I did acquire [an] oral form [likely sodium phenylbutrate, which Burzynski also sells and which is the prodrug for ANP] from a patient that did not survive and she is on a safe dose. I have enough to get the job done this time. They are charging ancillary charges but not providing the care. I would not go to Houston again.

So, an overdose that may have put her into a coma for 3 days. Burzynski has historically had a problem not only with overdoses, but also with reporting them and preventing future ones from happening, at least according to the FDA, who during a recent site review found:

  • Burzynski did not report all adverse events as required by his study protocols. One patient had 12 events of hypernatremia (high sodium), none of which was reported. There are several similar patients.
  • The FDA told Burzynski: “You failed to protect the rights, safety, and welfare of subjects under your care. Forty-eight (48) subjects experienced 102 investigational overdoses between January 1, 2005 and February 22, 2013, according to the [trial number redacted] List of Hospitalizations/SAE (serious adverse events) [redacted]/ Overdose [redacted]/Catheter Infection report. Overdose incidents have been reported to you [….] There is no documentation to show that you have implemented corrective actions during this time period to ensure the safety and welfare of subjects.” [emphasis added] It seems that these overdoses are related to the protocol, which requires family members to administer the drugs via programmable pump on their own. Further, patient records show that there were many more overdoses that were not included in the Hospitalization/SAE/Overdose list.


Poor Alyssa may probably be counted among those patients whose overdose, in her case in 1997, should have triggered changes to the protocol to prevent other patients from “almost losing” their children. But he could not demonstrate that he ever did, and the human wastage piled up until 2013 as the FDA, inexplicably, watched. ONE patient overdose should have triggered these protections.

Not only that, but if the family actually thought that the treatment could “cost up to $40,000,” like they told the newspapers, how could they possibly have had informed consent of the costs?

Alyssa died on 1 March 1999.

What is baffling, however, is how Alyssa’s mom’s memory absolutely does not square with all the press coverage of her daughter’s case. In July of 2014, when the FDA waffled and allowed desperate patients–mostly children–to die on Burzynski’s drug, Alyssa’s mom appeared on facebook extolling the benefits of ANP:


Non-toxic? By her own account, Burzynski’s drugs nearly killed her daughter. And she does not seem to remember that, even though there were some bad side effects, due to conventional treatment Alyssa was lived for years with no evidence of disease until the relapse. This is simply another example of how anecdotes should not be used as evidence of efficacy. People make mistakes.


h/t to the research ninja

Burzynski Patient Cari U.’s Story

[As Stanislaw Burzynski goes in front of the Texas Medical Board again to face a list of abominable charges in November, and as we expect many of the patients who have defended him in the past to be used as human shields again, we have been bringing you the stories of patients who defended him but won’t be at this hearing. It is indeed a rare pleasure to be able to publish the story of someone who defended him only to discover what type of operation Burzynski runs. Cari U.’s story, which is reprinted here in its entirety, was first published in Health in 1998. We are very grateful for her permission to publish it here and glad to report that she is doing well, cured by what was then an experimental treatment. She experienced two clinical trials, a legitimate one and Burzynski’s, and she offers a rare, crucial perspective on the differences between the two. All footnotes are editorial additions that were not in the original. –eds.]

Diagnosed with incurable cancer, I had to fight the FDA for the alternative treatment I desperately wanted. I won–and that’s when my problems began.

At the end of February 1996, I sat in a large hearing room on Capitol Hill, staring at the elevated seats soon to be filled by the dark-suited members of the Subcommittee on Oversight and Investigations. The topic of the hearing was whether my doctor, Stanislaw Burzynski, could keep treating patients with the drug that seemed to be ridding me of cancer.

Two years before, at the age of 21, I’d been diagnosed with a slow-growing non-Hodgkin’s lymphoma. The diagnosis had come almost by accident. A routine scan following a bout of food poisoning had shown tumors throughout my gastrointestinal tract. After doctors at several oncology clinics said they had nothing to offer me, I began taking Burzynski’s medication, called antineoplastons (derived from the Greek for “against cancer”). After a few months I received good news: Scans revealed the tumors were shrinking. But the likelihood of my being able to continue the treatment was shrinking as well. The Food and Drug Administration had just won an indictment of Burzynski on 75 counts of mail fraud and interstate commerce of an unapproved drug.

I, along with dozens of other patients, decided to protest. Since another patient and I lived in Washington, D.C., we took to Capitol Hill, toting our bags of medicine around to elected officials as we asked for help. Most of the senators and congresspeople listened politely, stiffly said they would look into the matter, and nodded good day. A handful, however, welcomed us into their private offices, served sodas, and spoke with us at length. After such a meeting with Rep. Joe Barton (R-Texas), he called this hearing. Barton is one leader of a new movement to give Americans more freedom of choice on their medical care. He favored a bill to speed approval of drugs for serious illness and had just cosponsored the Access to Medical Treatment Act, a bill that would give patients the right to try any alternative therapy, even an unproven one. Barton wanted our saga to illustrate his point. For us, the hearing was a chance to expose what we saw as a witch-hunt of our doctor.

Patients, former patients, and their family members arrived in Washington by the dozens, some flying cross-country to attend. I arrived with Michele, with whom I had been lobbying for the past month and who had become a good friend. Seven years earlier Michele had been diagnosed with a rare liposarcoma that, despite numerous tries at chemotherapy and alternative treatments, kept resurfacing. In front of me sat Maria, whom I had befriended in Burzynski’s waiting room last year. She and her two teenage children had traveled to D.C. from Pennsylvania. Maria had an astrocytoma, a brain tumor that had gradually shrunk to a sliver after she went on antineoplastons. On my other side was a father from New Jersey whose 12-year old daughter had been diagnosed with a brain tumor. “Only a couple weeks after she started on antineoplastons she was out of the wheelchair!” he proudly reported to me.

The entire back row of the hearing room swarmed with cameras and reporters. Barton took his seat at the center of the panel and, in his soft drawl, described the hearing’s purpose and announced that FDA officials had turned down his invitation to testify.

Burzynski’s most vocal supporters then paraded in, taking their seats at the front, where they would, one by one, tell their stories. Over the past year I’d gotten to know them: the wealthy businessman and his wife who had transformed their dining room into pro-Burzynski headquarters after antineoplastons cured her of the same type of cancer I was battling; the mother who would bounce her toddler son on her knee as she spoke of how antineoplastons had dissolved his brain tumor; and the decorated policeman whose baby, one of twin girls, also experienced remission from a brain tumor after treatment with antineoplastons, only to die of brain damage caused by her previous long run of chemotherapy and radiation. They all spoke in quivering, choked-up voices, some with tears streaming down their cheeks. Finally the policeman’s remaining twin daughter, her long white-blond hair tied with a bow, asked into the microphone, “Why can’t we throw away the bad medicine and keep the good medicine?”

Anyone who’d ever had cancer or known anyone with cancer began to cry. Anyone who was a parent and could imagine having a child with cancer began to cry. The congresspeople shifted uncomfortably in their seats.

Except for a couple of reporters scribbling on steno pads, I was possibly the only person in the room with dry eyes. Maybe I was unaffected because I had heard the stories a dozen times. But more likely I didn’t cry because I was angry. I was angry that Burzynski’s patients had to keep resorting to tears to get heard. I was angry for all the time and energy I had devoted to fighting off the FDA rather than to getting better. But I was also angry for a reason I was just starting to uncover: that our problems with the FDA could be traced to Burzynski himself.

What I didn’t realize was the scope of our actions. We were affecting the course of alternative medicine as a whole, being used as a voice for the Access to Medical Treatment Act. Yes, I’d like to think every American should have the right to the treatment of his or her choice. Yet I can’t help but see my story as a cautionary tale. Had I only known then what I do now.

I first visited Burzynski’s privately owned clinic in Houston after top specialists at Stanford and Harvard gave me the same advice: Do nothing-a strategy called watch-and-wait. Chemotherapy doesn’t work against slow-growing tumors like mine, they said, and radiation would damage nearby organs. When the cancer’s growth speeded up-in a year, five years, 20 years, no one could say for sure–then a bone marrow transplant might be the route to take. But perhaps, they suggested, if I sat tight for a while, one of the exciting experimental drugs being tested by the FDA would be approved. Unfortunately, I couldn’t get into any of the clinical trials; those spots were reserved for people who had been failed by at least one method of mainstream treatment.

But, at age 21, waiting was not easy. It was unsettling to know I had cancer and was doing nothing about it. Out of frustration, my parents and I began researching alternative treatments, from massive doses of vitamin C to macrobiotic diets to the unproven regimens of doctors from Canada to Mexico.

Given Burzynski’s notoriety, it didn’t take long for us to come across the subject of antineoplastons. We sent away for Burzynski’s materials and also contacted the Lymphoma Research Foundation of America, which, after noting that many people at its support group meetings were Burzynski patients, had compiled a list of those willing to share their experiences. We tracked down a dozen who had used or were using his treatment for the same diagnosis as mine. Amazingly, all said taking antineoplastons had led to a significant decrease in tumor size if not a complete and lasting remission. Over and over they repeated ‘one word: nontoxic. Even if antineoplastons didn’t work for me, I concluded, they wouldn’t cause harm.

I consulted my oncologist, who, after reading the information I provided and speaking with colleagues, took a deep breath and said, “I understand how frustrated you must be and why you would like to try this. I wish there was something here I could offer you, but there isn’t. I can’t tell you to go to Houston, but there is nothing I can find that would make me say, ‘Don’t go.'”

The scientific evidence for and against antineoplastons was thin. Burzynski had written papers that detailed impressive-looking results in individual patients, but they hadn’t been published in major peer-reviewed journals. Other oncologists who had examined records of brain tumor patients treated with antineoplastons had seen enough to recommend research, but they had looked at only seven cases. (Single-case reports can’t fully account for the fact that some tumors may wax and wane even without treatment.) And then there were the troubles of which I was well aware: Burzynski’s history with the FDA.

Fifteen years ago the FDA sought and won an injunction to stop Burzynski from shipping an unapproved drug across state lines. Two years later the FDA raided his clinic, taking patients’ CAT scans, MRIs, and other records. Burzynski had subsequently appeared before three grand juries but hadn’t been indicted. However, problems with the FDA seemed almost standard for the alternative doctors I researched. Many had resorted to practicing in another country.

Burzynski described antineoplastons as a mixture of peptides and amino acids found naturally in blood and urine that could cure brain tumors, lymphomas, and several other types of cancer without serious side effects. The premise was that antineoplastons reprogram cancer cells by switching off the genes that instruct them to multiply out of control and by switching on the genes that tell the cells to self-destruct.

A Polish-trained physician, Burzynski began treating patients with his mixtures in 1977. Initially he developed antineoplastons using his own urine; eventually he had gallons of urine shipped from public urinals. By the time I visited him he’d treated a reported 2,000 patients and was making synthetic antineoplastons in his own lab in Texas. In most cases antineoplastons weren’t covered by insurance plans, so patients themselves paid the medical bills, which started around $200 a day. I was one of the lucky ones. My insurance agreed to pay half.

I spent most of my first day at Burzynski’s clinic sitting in the large waiting room with three dozen other cancer patients and their families. This waiting room was different from the many others I had visited. Most obvious, it was filled with reporters and TV news crews, their lights bombarding us all. Words were unnecessary, as the youngest children told the story of antineoplastons’ appeal best. The children were victims of mainstream medicine. They wore the tattoos of those failures clearly: half-shaven heads zigzagged with scars; swollen, steroidal faces; and weak, wheelchair-imprisoned bodies. Then the cameras shifted to the children who’d been taking antineoplastons for months or even years. With full heads of hair, they ran and laughed and played with the toys in the waiting room, all the while hooked up to IV bags of antineoplastons.

Another difference was that people talked. No one had spoken in the waiting rooms at Stanford or Harvard or any of the other oncology offices I’d visited. Yet here there was an immediate sense of comradeship, and the common bond, it seemed, was that we all had heard unfavorable prognoses, even death sentences, from mainstream doctors. We needed the support of others who had sought out Burzynski as a last shot.

“I was diagnosed eight weeks ago with a brain tumor,” Maria volunteered the first time I met her. “I was skiing, and I had a seizure right there on the slope.”

“I’m here with my sister, all the way from upstate New York,” an older woman said. “She has kidney cancer and is back with the nurses now. Dr. Burzynski said he didn’t know if the medicine would help.”

I spoke with a man, bald with pasty yellow skin, who’d been diagnosed with a lymphoma. “We followed the advice of the first doctor we saw, and he got a bone marrow transplant,” his wife explained. “But before he was even released from the hospital the lymphoma came back. The hospital just dismissed us. They said, ‘Well, we tried. Just go home and get your things in order.'” The wife was 28, the husband 30.

I cringed when a woman asked me outright, “What brings you here? What were you diagnosed with?” But looking around the room at the people chatting, exchanging phone numbers, making dinner plans, and hugging each other, I realized it was a question everyone asked and got asked. For families who were sacrificing savings, jobs, and even homes to pay for this treatment, the security of friendship was all they had left.

In the waiting room that first day, I scrawled my signature on numerous documents releasing Burzynski from responsibility for anything that might happen as a result of antineoplaston treatment.

When I was finally introduced to Burzynski, he gave me a squinty-eyed smile, the corners of his mouth stretching toward long sideburns. A short man with a heavy Polish accent and a tendency to mumble, he exuded friendliness as he studied my chart. “Usually this treatment has very good success with slow-growing non-Hodgkin’s lymphomas. Every four hours you would get a dosage of two types of antineoplastons. You would get a CAT scan after you had been on the treatment six weeks. The treatment would continue for four months after you have a clear scan because we need to ensure that all of the lymphoma is gone and will stay away.”

I had heard similar promises of a simple cure at other alternative clinics and had fled. Yet the words of the patients I’d spoken with before coming to Houston echoed in my head, compelling me to begin.

The following morning in another clinic, I had a semipermanent IV surgically inserted in one of my largest veins, directly above the heart. The slender white tube was held externally by two stitches and completely concealable under clothes. Back at Burzynski’s clinic I was ushered into a large room filled with leather recliners, a sort of classroom where patients were taught correct administration of antineoplastons. On one wall hung newspaper clippings about Burzynski, one describing how he was called during Jacqueline Kennedy Onassis’s final days of battling lymphoma.1 He was not allowed to bring antineoplastons to her bedside in New York, however, since the first civil trial had ruled he could practice the therapy in Texas only.

Despite the ruling, it was no secret that the majority of Burzynski’s patients were not from Texas. The clinic operated on a “don’t ask, don’t tell” basis. I gave a Texas address of distant cousins to whom my monthly supplies of antineoplastons would be mailed. My cousins would then ship them to me. Many patients had similar arrangements. Others restocked by flying to Texas frequently with several empty suitcases.

I received my pump, attached by thin translucent tubes to my first bags of medicine. The pump looked like an enlarged calculator with a number pad and a digital display. It fit snugly into a blue tote the size of a camera case. The nurse connected the medication to the catheter with a simple, painless twist, programmed the pump, and began infusion of the clear, sticky antineoplastons. Because of their urinelike composition, the medication smelled of an overused public toilet. As Burzynski had promised, I felt nothing as the drugs entered my system.

Over a few days at the clinic I learned how to connect and disconnect the IV bags, change the tubing, and set the pump. I also experienced my first side effects: I couldn’t eat because my stomach was churning, and I was too tired for anything much besides reading in bed. Finally a nurse gave me a shot of an anti-inflammatory steroid, told me my reactions were good-signs of “tumor breakdown”-and, with Burzynski’s consent, sent me home, where I returned to college for my senior year.2

Twelve weeks later my CAT scans revealed the first signs that the tumors had shrunk. I called everyone I knew, relaying the news as tears of relief dripped onto my IV bag. Each scan that followed showed more reduction, and by eight months my scans, read by my radiologist and oncologist in D.C., showed a 35 percent decrease.

Word from Burzynski’s office, though, was that my response was slow, and so I was instructed to increase my dosage steadily. I began feeling the toll: My joints hurt to the point that it was painful to bend, type, or write; I could hardly eat; and I often slept the entire day. Worse, though, was the thirst. No matter how much water I drank, I was always on the verge of dehydration. I complained to my oncologist about all the side effects, and she recorded them. I complained as well to Burzynski’s nurses who called each week to check up on me. They said they, too, were recording them. I didn’t mind that no one suggested remedies. The pain seemed small payment for steps closer and closer to a cure.

Then one day I got a call from someone on the phone chain set up by Burzynski patients, relaying the news of the doctor’s indictment. As I listened to the shaky, panicked voice, I sized up my dwindling supply of antineoplastons. It would last a few weeks. I hurriedly phoned the clinic, asking to have six months of medication reserved for me. The place was in disarray. Some staffers were reluctant to speak freely, fearful the phones were bugged. Newcomers were filling in for the usual receptionist who, after traumatic cross-examination during her grand jury testimony on Burzynski’s behalf, suffered a heart attack while driving home. Because of the commotion and demand, the clinic was allotting each patient a two-month supply of antineoplastons, which had to be picked up in person at the clinic in Houston.

“Only a two-month supply?” I pleaded. “It’s finally working, and that’s not enough.”

Even when a drug is backed by a large pharmaceutical company, the FDA approval process is arduous and expensive. Rather than “innocent until proven guilty,” the premise is essentially “ineffective until proven effective.” And effective means results within precise standards from several phases of trials determining a drug’s safety, whether it works in the test tube, then on animals, then on humans, and then the best possible protocol. Most trials eventually involve not just a drug company but doctors in multiple hospitals working together to test the drug on hundreds if not thousands of patients.

To the FDA, Burzynski was someone who had flouted this system, who by not collaborating with oncologists, a major medical center, or a drug company was refusing to play by the rules. After the injunction in 1983, Burzynski had applied to the FDA to begin clinical trials, but the agency said his application was incomplete. In 1989 Burzynski got the go-ahead for a clinical trial with breast cancer patients, but the FDA says he never submitted any data. Trials were approved again in 1993, this time testing brain tumor patients, but the agency says Burzynski refused to enroll enough patients and the trials were canceled. All the while, at his clinic, Burzynski continued to treat hundreds of patients at a time with antineoplastons.

Shipping an unapproved drug across state lines to patients who aren’t enrolled in a clinical trial is a federal offense. (States regulate medicine within their own borders.) After a decade of trying, the FDA had finally convinced a grand jury that Burzynski was doing just that.

The day after I received the call I skipped work and graduate school, and flew to Houston with my mom. We hauled cardboard boxes filled with IV bags of antineoplastons out of the clinic, into our rental car, and to UPS. Then we met up with the dozens of other patients who had dropped everything to come to Burzynski’s aid. We organized a picket for the following morning at the federal building in downtown Houston.

The wealthy businessman and his wife, the mother and her saved little boy, and the decorated policeman, as well as other patients, relatives, and friends, paraded around and around, shaking homemade signs and chanting, “FDA, go away! Let us live another day!” Parents pushed their-children in wheelchairs. The children chanted through puffed-up cheeks and waved signs as best they could with swollen hands.

Our efforts appeared to succeed, as the clinic stayed open. I returned to D.C., where Michele and I, along with lobbyists working on Burzynski’s behalf, took to Capitol Hill every week.

Now that I was being quoted in the press, I started receiving calls from members of Congress, reporters (from as far away as London), and even interested scientists. Some were anonymous tips on who our friends were on the Hill. But others wanted to keep me abreast of allegations against Burzynski that were surfacing. One caller had heard that Burzynski had been given an opportunity to affiliate with the prestigious M.D. Anderson Cancer Center in Houston but had balked. Another claimed that Burzynski’s annual take-home pay topped a million dollars.

As the charges multiplied, I asked Burzynski’s staff and the people leading our activist efforts for background information so I could accurately refute them. Had Burzynski refused help from a leading cancer center? Was he pocketing millions supplied by patients who had given up everything? But I was shunned. “You are beginning to remind us of E.,” I was told. E. had been blacklisted by the group for asking questions that leaned toward “the other side.”

Burzynski’s patience was waning, too. When a New York Times reporter asked him why a top medical journal had never published findings on his drugs, he responded, “To hell with them.” He went on to compare himself to Albert Einstein and Louis Pasteur and said, “[Treatments like mine] have never happened before in medical history, so if the New England Journal of Medicine refuses to publish my paper, why should I waste my time with these fools?”

There, in black and white, my doctor was admitting he’d lost interest in making his treatment more scientific. All this time I’d campaigned on Burzynski’s behalf, I had cast him as a victim of the FDA and its conventions. But now I wondered whether it was actually the other way around. Might Burzynski be getting in the way of science more than it was getting in his way?

Taking a chance on this insight, I telephoned acquaintances at the FDA. They said that in trying to set up clinical trials in 1993 Burzynski withheld information, was evasive and hard to work with, and had only six patients in the trial until a judge ordered him to enroll more. Their message: Your doctor is the one making it difficult. Then I phoned Burzynski’s clinic and spoke with the clinical trials director, Dean Mouscher. He had no medical training. After his father had become a patient of Burzynski’s for a brain tumor, Dean had felt the calling. “Do you know how much paperwork the FDA wanted?” he asked me. He explained how the agency kept asking for minuscule, nitpicky information, how the clinic would have had to hire extra help to meet the FDA’s demands, how it had a limited staff. He said the FDA also had to okay every new patient and was turning away people who needed treatment but didn’t fit the guidelines. Mouscher’s answer in effect confirmed the FDA’S view: The clinic wasn’t willing to follow the rules.

Still, our political efforts had shaken the FDA, and soon after Barton’s hearing the agency agreed to approve a new set of clinical trials on antineoplastons, enrolling each and every one of us-an unprecedented break with the usual practice of studying only patients who fit specific protocols.

But Burzynski was still facing trial on mail fraud charges. Ironically, as he was scheduled to appear in court for illegal shipment of antineoplastons, he was at the same time legally sending them to all 400 of his patients around the country as part of the FDA-sponsored trial.

As the court date neared, our campaign gained more momentum. Patients bought angel pins for “Dr. B.” and his staff to wear. TV news shows covered our effort. “If you convict the doctor,” asked Ted Koppel on “Nightline,” “are you sentencing his patients to death?”

Meanwhile, my side effects worsened. Burzynski’s staff of doctors continued to tell me my increasing pain wasn’t a sign of toxicity but was more “tumor breakdown,” evidence that the high doses were working. To assuage my pain, they filled me with prescription painkillers, steroids, and anti-inflammatory agents, toxic medications to counteract effects of the “nontoxic” treatment.

Nothing helped. I rarely slept since the medication forced me to get up nine or ten times a night to go to the bathroom. Because antineoplastons contain a lot of sodium, the more I upped my dosage, the more thirst became the center of my life. I would drink a gallon of water during the day and go through another gallon at night. And I was still thirsty.

My regular oncologist was also growing frustrated since she had no basis on which to judge my progress in conjunction with my increasing side effects. She didn’t know what to expect, what was typical, or how long to continue therapy before deeming it unsuccessful. Burzynski seldom had answers to these questions. Although the clinic’s nurses called me regularly (daily when the FDA tightened its reins), I was losing confidence that my reactions were being analyzed and compared with those of other patients.

Exasperated and unable to control my nausea, I found myself back in the office of the gastroenterologist who had originally diagnosed the lymphoma, begging for help. He immediately ordered biopsies, tests he said should have been required months before.

He was right. For what showed up in the biopsies was that the cancer cells had turned aggressive, spreading fast. From all my research, I knew what that meant: The lymphoma was now much more dangerous, but was also likely to respond to chemotherapy. In a couple of weeks I had stopped antineoplastons, moved to be closer to my parents, and, at Northwestern Memorial Hospital, begun six rounds of standard chemotherapy.

Standard. Just the word relaxed me. I snuggled into the comfortable arms of an established scientific therapy, where I was fully informed of my exact protocol, not to mention any and all anticipated effects gleaned from years of research and painstaking documentation.

People laugh when I tell them that despite losing my hair, chemotherapy was simple. Now I realize I was comparing the treatment to all I had been through while taking antineoplastons.

Though the chemotherapy was not completely effective, its failure finally made me eligible for a spot in a clinical trial on the promising treatment called monoclonal antibodies. The therapy was touted as a magic bullet, infusing human antibodies and doses of radiation directly to cancer cells, eliminating the toxicity and side effects that normally accompany cancer treatments. Conducted at Northwestern, this was just the sort of trial that the Stanford and Harvard specialists had advised me to watch-and-wait for.

Suddenly I was experiencing the drug development process as it was meant to be. At Northwestern I was grilled relentlessly on my symptoms, poked and prodded, and bombarded with tests. Yet after my experience with Burzynski I felt grateful to be monitored so closely. When the next patient complained of a side effect, I knew the doctor could research the exact day, the exact hour, I’d experienced the same problem. With Burzynski, the patient after me who complained of a side effect like mine was probably told: “It’s tumor breakdown.”

In two weeks the treatment was complete. A few months later I heard the words I’d waited three years for: “There is no sign of lymphoma anywhere.”

Burzynski’s criminal trial began in February 1997. The media, swamped the courthouse. Patients launched rounds of letter writing, took out huge newspaper advertisements, and raised hundreds of thousands of dollars for the legal defense. In May, when my local newspaper ran a photo of a smiling Burzynski trailed by the little boy who was saved, I knew without reading the story that Burzynski had been acquitted.

Two years have passed since I stopped using antineoplastons. I still catch my former doctor on television news and tabloid shows. He is always posed the same way, standing authoritatively next to MRI brain scans, pointing out the changes. First scan, deadly tumor. Second scan, after treatment, no tumor.

Every now and then a desperate patient sees my name in an old newspaper article and calls, seeking information about Burzynski, just as I had done with patients before me. I am never quite sure what to say. Such hope and yearning wait on the line, it is not right to squelch it. I think of Maria, who is still infusing antineoplastons for the remaining sliver of her brain tumor but who is alive and relatively active years past her prognosis for survival. This person on the phone does not have a brain tumor, though; she has ovarian cancer, something that Burzynski, I assume, would say he’s not sure antineoplastons can be effective on. But he’d be willing to try.

Willing to try. How can someone facing death disregard those words from a doctor? A part of me wants to tell the caller just to enjoy what’s left of her life, not to bother with long shots that might make those last months miserable and cost her family’s savings or her house. But I can’t say that. Even if the chance of antineoplastons working is one in 100, what if I’m discouraging that one?

My response would be so much simpler had Burzynski lived up to his responsibility as a scientist and healer by working with others to collect statistics on his medicine. But he didn’t.

After I discontinued his treatment, I requested that a copy of my records be sent to me. Flipping through page after page of recent daily entries, I read, “Condition unchanged… Patient doing well,” “Patient feels good.” I checked the name at the top; it was mine, although I couldn’t remember a single time in the past six months I had felt “good.”

The FDA released preliminary data from the clinical trial earlier this year showing that more than half of the treated patients had high levels of sodium in their blood. The condition may have contributed to seven deaths. Burzynski disputed the finding.

The wealthy businessman and his wife were among the patients at another congressional hearing this spring. This time they rallied passionately for the Access to Medical Treatment Act, which is currently being decided in Congress.

I can see both sides of the argument, for I have lived them. I believe in letting cancer patients try unproven treatments; had I been free to try monoclonal antibodies when I was first diagnosed, the lymphoma might have been wiped out in a few months rather than a few years. Yet when I look closer, the proposed law scares me. It means any doctor could claim to have a cure and prey on people desperately seeking help. It removes incentives for alternative doctors to conduct trials and contribute to science.3

I don’t know who’s right. But I do know that for 15 years the FDA and Burzynski have chased each other, spending precious time and money on legal battles rather than on contributing to science. Had everyone involved focused on what was truly important, antineoplaston therapy could have been proven or disproven as a viable treatment by now.

Instead, the cancer patient loses. And it shouldn’t take a brain surgeon, or an oncologist or the commissioner of the FDA to figure this out.


  1. This article apparently appeared in a tabloid.  OnassisIf this in fact happened, unless the Clinic had specific permission to release patient information, this would seem to be a big violation of patient privacy. It strikes us much in the same way the Clinic ghoulishly latched onto the story of Brittney Maynard, a cancer patient who made national news after electing physician-assisted suicide. According to a report in USA Today on 14 February 1994, when asked if Jackie was taking alternative therapies (which she was known to be interested in) her spokesperson replied, “I don’t believe so. She has great confidence in her doctors.”
  2. Nurses at the Burzynski Clinic have said things like this for some time, apparently. According to a 2000 article in US News and World Report which covered the story of Burzynski Patient Andrea W., who had a different tumor:Over the following six weeks, [Andrea’s mother] says, her daughter suffered side effects ranging from disorientation and high fevers to constant thirst. She and her husband […] repeatedly complained to clinic personnel. Each time, she says, “the nurses were jubilant. They said this [side effect] was a sign the tumor was breaking up.”Andrea was dead within the week. Burzynski’s staff have been feeding people this line for decades: getting worse is getting better. See the cases of Evan WJustin BGeorgia MCody G,  Leslie S, Domenica P., and Chase S. Think of Amelia S. And then think of the nurse who told John D.:“[…] she’s been there for 10 years & has seen this before & many times, the more severe symptoms that are seen as a result of the therapy is really a good sign that it’s working better.”Now we can add Cari U. to this list of patients who were misled.
  3. This is precisely the problem with so-called “Right to Try” laws. One such law just passed in Texas this summer.

Again, and as always, special thanks to the skeptical research ninja whose tireless work has made this article possible.

Burzynski Patient Laura L.’s Story

Tonight we’re going to take a break from the patients who defended Burzynski in court and discuss one who advocated for him in a different way, on the Burzynski Patient Group website. Indeed, her story only ever appeared on that website, as far as we can tell.

After a few years of back pain, in September 2003, Laura L. started physical therapy because her leg was going numb. On October 11, she had an MRI and it revealed a plasmacytoma and damage to her spine. Before she even had a diagnosis, Laura’s relatives suggested that she go to the Burzynski Clinic:

We made the appointment for October 30th and flew to Houston on the 29th. My bone marrow biopsy was done on the 28th, so I didn’t know I had multiple myeloma until I was in Houston. It’s a good thing I went right away. My oncologist was worried about me leaving. He wanted me to have radiation treatments right away. I got them quickly in Texas.

First point: she had radiation, which is part of the standard treatment for this cancer. That itself makes it impossible to determine whether or not Burzynski’s treatment contributed to Laura’s care in any meaningful way.

Laura does not go on antineoplastons, rather the prodrug for them, sodium phenylbutyrate (PB), which Burzynski manufactures. She is also on a host of other drugs:

When I arrived in Houston, I had to walk with a walker. But I quit using it during the three weeks of treatment at the Burzynski Clinic. I was getting better quickly. My treatment consisted of 30 pills per day of sodium phenylbutyrate (PB), four pills per day of Aminocare A10, 200 mg. of Thalidamide, 40 mg. of dexamethasone for four days and then off for four days. I had radiation every day. I had zometta infusions and I will continue that for a couple of years to heal my bones. I get these just once a month. On the first day at the Clinic, I also had a shot of procrit, because I was so anemic.

With the exception of the PB and Aminocare supplement, both manufactured by Burzynski, so far as I can tell, there is nothing remarkable about this suite of treatments. Thalidomide is often given to MM patients, and dextramethasone is a steroid, which is another common treatment. With radiation and an only slightly abnormal combination of therapies, why does Laura think that Burzynski’s patent medicine in the mix made a difference?

In December, Laura is very near death with a high temperature and wonky sodium level which put her in the ER:

The next day, I had a chest x‐ray, which revealed that I had pneumonia in both lungs. I finally went home on Christmas day and that was a wonderful gift to me. I was very weak, though, and I had a hard time climbing stairs. I started having a lot of back pain and then my bone‐scans revealed more lesions. The Burzynski Clinic recommended I have a stem cell transplant. I was very scared, but I trusted their decision.

This sure suggests that Burzynski’s novel medicine medley had failed. Stem cell transplants are part of the normal treatment regimen for MM as well, a conventional approach. She says:

I just had the stem cell transplant and did well with that. I’ve been home since April 25th, 2004. I am not even sterile. Now, I am only taking the sodium phenylbutyrate pills and I am still getting better. The doctors who gave me my stem cell transplant were very impressed with how much I have improved since my diagnosis, how well I did with the transplant and how I am doing now. I thank God for Dr. Burzynski and his cancer treatment.

The question here is, why? Laura had every conventional treatment in the book and credits Burzynski, whose only innovation giving her almost certainly worthless (and apparently already failed) PB.

After all the conventional treatment, Laura L. lived until 2008, when she died of her disease. Sadly, the Burzynski Patient Group “disappeared” her story. How many others have disappeared from that misleading site over the years? (Quite a few, actually. We’ll remember those patients in time.)

Burzynski Patient Carol M.’s Story

As we prepare for Burzynski’s upcoming hearing in front of the Texas Medical Board in November, and anticipating that people who happen to have survived Burzynski’s and support him unquestioningly will rally for him as they have in the past, we are telling the stories of patients who have supported him in court, in the political arena, and in the media to find out what happens to patients who defend him. So far we have written about Burzynski patient Elke B., Burzynski patient Douglas W.Burzynski patient Janet C.Burzynski patient Sen. Ed G., McKenzie L, and Alice C. These patients may not be testifying in the upcoming trial, but their stories are perhaps the most important and are far more eloquent and revealing.

In September 2011, Carol M. was diagnosed with stage IV, triple negative, inflammatory breast cancer. This is a very bad diagnosis, and the median survival time for patients diagnosed with stage four IBC cancer, according to the American Cancer Society, is about 21 months, which means half of patients live 21 months past diagnosis. The “triple-negative” means that the tumor will not respond to receptor targeted treatments, though it is responsive to other chemotherapy. It’s aggressive and very likely to recur.

As Carol tells the story on April 25, 2012, because she had a younger relative die the previous year of the same disease:

[W]e decided to look for a treatment other than the traditional protocols. A friend recommended Suzanne Somers’ book, Knockout, and, with no other treatment beforehand, we went straight to the Burzynski Clinic. I feel kind of like a poster child for Dr. B.’s Clinic.

She also watched Eric Merola’s uncritical patient exploitation film, Burzynski: Cancer is a Serious Business, which is staggeringly unconvincing to experts, but is eagerly received by the desperate. Suzanne Somers’ medical advice is absurd and dangerous.

As stage IV suggests, by the time the cancer was detected, it had spread through her body. Later we hear that she is watching a large tumor in her breast, two lymph nodes, a tumor in her abdomen, and one on her rib.

In October 2011, Carol is in Houston at the Burzynski Clinic. The regimen she describes is what the clinic sells as “gene-targeted therapy,” but is basically just an untested chemo cocktail with a sodium phenylbuterate chaser. This is the same witch’s brew that was recommended by the Burzynski boys to poor Kathy B. who said that she:

made this video [of a patient visit with Greg Burzynski] in anticipation that I would be receiving the antineoplastons. Apparently after spending over 30,000 here I found out that the Antineoplastons are only reserved for brain cancer patients who have already undergone chemo radiation. FDA put this restriction on the Burzynski Clinic, so any other cancer patients are BASICALLY ONLY GETTING THE TRADITIOINAL ALLOPATHIC TREATMENTS OF SYNTHETIC ANTINEOPLASON PILLS THAT DID NOTHING FOR ME.

We don’t hear what chemotherapies she is using. Breast cancer patient Denise D. ( a truly heartbreaking story) was on Xometa, Xeloda, Zolinza, Tarceva. Real drugs. So maybe we should not be completely surprised that after two months of chemotherapy, in December of 2012, the tumor is responding. A few of the tumors are not visible and there no new nodules on her scan. This is not a miracle; this is chemotherapy.

She signed a petition on Burzynski’s behalf in March, where she describes herself as “stable.”

In June, she reports she is in remission:


Of course, she has been on chemotherapy, so I don’t know why she is giving Burzynski undue credit.

Then in July, something ominous. Absolutely no details, however:


On July 30, bad news.


Carol M. died on Jan 22, 2013, about 16 months out from diagnosis, about five months short of the median survival.

For reliable information about clinical trials, visit clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay

Burzynski Patient Amelia S.’s Story

[Houston Press Readers: This is a re-post of an earlier story that really shows what we’re dealing with at the Clinic. The other story we recommend is Burzynski Patient MacKenzie L.’s story. Just last year, her family fought for him to get his “trials” back, and then horrible things happened to them.]

As Stanislaw Burzynski stands in front of the Texas Medical Board to answer for yet another litany of abominations, patients are no doubt gathering to protest in front of the courthouse so they can beg for their lives. Many of his supporters in the past have been then-current patients who were convinced that Burzynski is their only chance at life. Burzynski’s patients often have dismal prognoses and their prospects do not improve when they buy into his medical adventurism. In anticipation of such patients being used as human shields yet again, we are focusing on stories of people who have testified on Burzynski’s behalf, begged for their lives in courts and in the public, but who of course died anyway. These patients, so far, include Burzynski patient Elke B., Burzynski patient Douglas W.,Burzynski patient Janet C.Burzynski patient Sen. Ed G., and McKenzie L. These patients may not be testifying in the upcoming trial, but their stories are perhaps the most important and are far more eloquent and revealing.

Last week, we posted about the patient who had perhaps the most high profile campaign in the US in recent years. This one is perhaps the biggest in UK in recent years. The case of Amelia S. is a hard one to write about, because it tipped skeptics off to a pattern in the stories that patients at the clinic were telling, that their worsening symptoms were signs of improvement. As you will see, this is a story that Burzynski’s patients have been relating for decades. It’s a long post, but it’s important that you read to the bottom.


3-year old Amelia S. lived in Reading. In about September of 2011, Amelia started displaying neurological symptoms–wobbliness and a trembling left hand (often drawn into a fist). The family brought her in to the hospital after she started falling down. On Jan 30th, 2012, she was diagnosed with a brain tumor, and on the 1st of Feb it was determined to be a large tumor on the brainstem. Surgery revealed a grade 2 diffuse astrocytoma, which the family was given to understand meant that the core of the tumor was likely grade 3. Doctors were unable to remove much of the tumor, only the 4 biopsy samples.

Amelia’s medical team was honest. The benefit offered by radiation and chemotherapy, on average, could be measured in weeks. These are bad, bad tumors. The family brought Amelia home on the 20th of February, her mobility and speech impaired, opting to spare Amelia the unpleasantness of the chemotherapy and radiotherapy. When they saw Amelia improving (we’re not told what those improvements were–whether they were reduction in tumor size or reduced swelling as she recovered from surgery, for instance), however, family understandably felt obliged to look for other options.

They found Burzynski. Immediately, the enormous price tag of his antineoplaston treatments spurred the family on to raise funds. Amelia’s father began documenting their journey to Burzynski in a couple of places, at ameliasmiracle.com and on a Facebook page of the same name. As a whole, his story is the most moving and insightful account of parental heroism that I have read since I began this project, and I strongly recommend that you read it for yourself.

By the end of February 2012, the family had decided on Burzynski. We were introduced to Amelia on February 28th in a video posted by her father:

Attached to the video was a simple plea:

Our daughter, Amelia, was diagnosed at the beginning of February with a very rare type of inoperable brain tumour. She has only a few months to live. We have a ray of hope – treatment for her is available at the Burzynski clinic in Houston, Texas. This treatment in total will cost around £200,000. We need to raise this money to allow Amelia to have the chance to live a normal life.

From the beginning, the family sought media attention to raise money for the Burzynski Clinic, as we see in a Facebook post. the earliest example of Amelia’s story appearing in the press was in the local Wokingham Times on 8 March 2012. The public campaign was launched. And by 14 March, £45,000 had been raised by the community, enough to get Amelia in the door at the Clinic (recent accounts put that initial consult at $30,000). The Wokingham Times seems to have informally adopted the family and followed their progress closely for the rest of the year. These community fundraisers appear as human interest stories and reaffirm that people are basically kind and generous and trusting. In fact, my first exposure to Burzynski and realization that something was profoundly wrong came after I did a newspaper database search for all of the patients that I could find. Of those patients I could find an outcome for, every patient who appeared in the international press, usually begging for money, with a single exception was dead.

A week before Amelia hit the papers, on the 6th of March, Eric Merola, who made an uncritical hagiography to Burzynski unironically called, Burzynski: Cancer is a Serious Business, interviewed the family about their upcoming trip to Houston for his new movie, a sequel, which comes out soon. He planned to follow Amelia’s progress in the film. On the 17th, as they planned their trip to the US, the family put up a short video for Amelia’s donors:

So, she clearly she packed everyone’s hearts into her suitcase. Such a dear.

They left on the 23th of March for America, having raised a staggering £75,000 for Burzynski. In a Wokingham Times piece, her father stated some of the opposition that the family had met:

Mr Saunders added that he was amazed at the number of people who had suggested the American treatment would be fruitless.

He said: “I was warned about this before we decided to go with the Burzynski treatment – it is like there is a vendetta out against the man.

“It is so strange, and all I keep getting are contacts from patients who have been or are being cured by the treatment, or at the very least have had positive results.”

People for whom Burzynski’s treatments fail tend not get into contact with other patients. We are witnessing what is known as survivorship bias. You can talk to a dozen survivors and have a positive impression of a treatment but fail to take into account the 10,000 failures, which would put a treatment well below the efficacy of chance remission, misdiagnosis, and unrecognized responses to traditional therapies. This is why controlled trials are so important to determine efficacy, so we can sort out the background noise of chance from real effects. It is also an important reason that dependence on patient testimonials is a red flag for quackery.

Amelia has had a hole opened in her chest where a Hickman line has been inserted, where she will receive her ANP. These frequently have complications with infection and clogging.

By the 30th, Amelia has her backpack full of antineoplastons, as we see in a video. Her family will spend the customary 3 weeks or so in the US learning to administer the ANP themselves. They are infused at high doses almost continuously.

Amelia’s dad shares his first impression of the Clinic on the facebook page:

The clinic have been fantastic. I am still amazed that people give them such a bad press. They have literally bent over backwards to get this started for us. The receptionist Irena even has a photo of Amelia behind her desk, she is so lovely!

Well there is a reason, of course. It’s because they apparently tell patients that they can tell brain tumors are shrinking by looking at their urine:

Mr Saunders said: “Every day is a milestone and the clinic is being extremely thorough in its tests – Amelia has regular blood tests and these are all closely monitored to check for signs of all sorts of things.

“Interestingly, they can actually see the early signs of the tumour breaking down by how her body excretes it in her blood and urine. This might be the only time in my life I get excited by seeing this kind of information!

I’m not sure what this is supposed to mean, and before Amelia’s story I would not have even noticed this. I can see why a parent clinging to hope would sieze onto any augury of healing. Remember, this family has not had good news about Amelia since her diagnosis. Little steps, literally, mean the world to them. I contacted research oncologist David Gorski, who studies and treats breast cancer, about this claim, and he replied:

“Oncologists don’t monitor anything in the urine for tumor breakdown, at least not for that tumor. There is such a thing called tumor lysis syndrome, but that’s usually only seen in leukemias and lymphomas as a result of induction chemotherapy that kills a lot of cancer cells really fast, releasing potassium, and a number of other byproducts. However, as I said, you don’t generally see this in solid tumors (mainly because none of them respond nearly as dramatically to chemotherapy as hematological malignancies). It’s also a complication to be managed, because its most frequent result is renal failure. It’s possible that he’s referring to GFAP, which is a biomarker for glioma under study, but I don’t think it’s really been validated as a measurement of response to therapy.”

There are apparently no biomarkers for glioma that appear in urine. Amelia had chronically low potassium at this point in her treatment.

We don’t see a lot of what is going on at the clinic on facebook, where most of the story is told record, but we get a clue on Amelia’s other website:

10th April 2012

I realised I hadn’t updated the news section here for a few weeks, this is largely because we update our Facebook page daily and much of our time has been taken up going to and from the clinic. Every day has been a bit of a rollercoaster here. Amelia has been on antineoplaston treatment for a week and a half and at the end of last week we hit a bit of a wall with the treatment dosage. Amelia got pretty sick so we had to back down on the dose a little. Yesterday she started getting really bad headaches so we have now also put her on a low dose steroid as well. Other than this, she is doing well and responding well to treatment. We think there are some very slight improvements in her coordination of her left hand side. We are continuing the treatment, and the aim is now to increase the dosage more slowly to see how she responds. All in all we are doing well and looking forward to coming home soon!

So, she’s been up and down. The steroids are a recurring feature of treatment and can very quickly reduce inflammation in a way that leads to improvements of the type that the family is reporting. You see it a lot on this website. It’s hard not to think of John D., who experienced worsening symptoms while under treatment (and on steroids), which was met with joy on the part of the staff:

I want to mention that the IV nurse told mom today that she’s been there for 10 years & has seen this before & many times, the more severe symptoms that are seen as a result of the therapy is really a good sign that it’s working better. I know this nurse & she is very honest & helpful. She also runs the class they run every week for new patients.

On April 19th we hear that the family is preparing to return home, and on the Wokingham Times page where it is announced, we see that damned picture again, patients literally at death’s door, posing in front of the Burzynski Clinic. We get the update that they have arrived back in England on the 22nd. Amelia’s dad talks about the fundraising (truly amazing acts of generosity by the whole community) and how grateful he is for the immense support that the family has received. (Amelia gives her own thank you’s in an adorable little video a few days later.)  He speculates on the road ahead:

I have come home from Houston with a strange kind of feeling. Perhaps a little apprehension, a bit of fear, a dose of happiness and a shot of hope. We still feel that every day is a roller coaster. We may be sitting on a ticking time bomb, and it may still be that any day we might lose Amelia. Every day truly is so precious, and it is a joy to watch her and her little sister back together again, albeit in a different way, a more careful one, where we have to watch them all the time.

The next day, it sounds like Amelia is having the unquenchable thirst that comes with ANP:

Amelia has been OK today, she was a bit sick earlier but we think this was because she drank too much too quickly – she was fine shortly afterwards. We’ve been getting used to life again at home and putting everything in place we need to.

And we hear that she is due for her first post-treatment MRI:

As far as the MRI goes, I just want to make a point that we aren’t expecting a lot to have happened with this next scan. As part of the medical trial we are required to get a scan done every 4 – 5 weeks – and these things take time to show any change. It is very likely the tumour may be the same or have grown slightly. This is fine and we expect this, and clearly if it has shrunk then great – but we aren’t expecting it to have done.

Tumors on which chemotherapy is working should probably not be growing at all. It’s the definition of “working.”

On the 25th:

Today has been a busy day. Unfortunately Amelia was pretty sick this morning – those of you who have been following our journey will know that we are trying to increase Amelia’s dose of drugs and it sometimes has side effects, this seeming to be the most common. She was fine afterwards and has been eating for the rest of the day.

We had an appointment at the hospital at lunchtime and ended up spending most of the afternoon there so we could get everything sorted. The doctors here are being very cooperative – but I must emphasise that they are recommending different treatment (chemo) and we have consistently turned this down. We have not found a single person with a DIPG tumour that has had any effect with chemo – so continue to find it strange that this is offered. Our plan is to continue the antineoplaston treatment for as long as required. We realise this is being frowned upon by the doctors here – but ultimately we are trying the only thing we found that had credible results.

Credible results would have been publication and replication of his trials. Burzynski can’t seem to complete his trials, much less publish them (which is odd given that he has the test agent already developed and the tumors he is working have outcomes comparatively rapidly). If trial completion were a batting average, he’d be at .015 and his trial publication average would be .000.

By May 4, Amelia is a celebrity. They have raised £160,000 (!) and she is meeting and hanging out with celebrities. And the paper has clearly been reading Amelia’s dad’s updates. Also, her dad’s website announces:

Well we have now been back from Houston for a few weeks – and Amelia has continued to slowly improve with both her walking and speech getting better. The Burzynski clinic were brilliant – we were made to feel so welcome and Amelia really made an impression on everybody there!

We had an MRI scan on Monday that revealed her tumour has stopped growing. Considering she has had no treatment other than the antineoplaston therapy from the Burzynski clinic, we are really pleased (and impressed) that the treatment seems to be working so quickly. We are now continuing the treatment and increasing her dose such that we try to get her to the ‘target’ dose for her weight.

This tumor “stopped growing” news is taken as validation that the treatment is working, so much so, that the Wokingham Times irresponsibly reports that result.   According to her dad:

1. Amelia has been on treatment for less than 4 weeks.
2. She is not on full dose yet, and has some way to go to get there. This is a slow progress, perhaps taking another month or so to achieve this (or more).
3. She has a low grade tumour. Any response will be slow. In other kids where the treatment has worked it has taken many months to show response.
4. She is still on steroids.
5. Her previous scan showed a 13% growth in 7 weeks.

So, having now had several opinions of the scans, I can confirm that Amelia’s tumour has STOPPED GROWING. This is amazing news and we are over the moon that this is the case. For this tumour type, in this short time, with a tumour of the size of Amelia’s, this is an incredibly good result. This is an INCREDIBLY hard tumour to do anything with, one of the hardest to treat and normally very lethal. In most circumstances Amelia would no longer be here (in February there was no way we thought we’d get to May with her) so to have the thing stable is fantastic news.

A few important points. It’s a low grade (slow growing) tumor. This does not seem to have been a PET scan, which would give  a sense how of active the tumor was–to see if it had in fact “stopped.” And initial responses to chemotherapy (and ANP is chemotherapy by every definition) correlate poorly to outcomes, which is, of course, the final goal that everyone involved is keenly interested in. Of course, the Clinic doesn’t convey that information:

I also had a good chat with our doctor in Houston earlier. Again all sounding very positive, and we have again increased Amelia’s dose tonight […] The clinic sound very positive that Amelia’s tumour stopped growing so quickly. Let’s just hope we have more positive news on the next scan in June.

On 12 May, we get an update about Amelia’s progress:

Amelia was on top form today, she was pretty tired after the wedding but perked up and during doses, when we unplugged her from her backpack, she was really bubbly. Later in the afternoon she was doing some proper walking – unassisted. I think we have now realised that a lot of the walking problem now is just her confidence. She was walking almost normally, and certainly the same or better than she was before her operation. Fantastic.

So, they are at point zero, which considering where they have been is wonderful from the family’s perspective, but it doesn’t tell us that the ANP is working of if she has just recovered from surgery to her brain stem and is now on steroids. And this may be important, as dad mentions on the 20th:

She really has improved. We’ve both noticed significant improvements in her speech, mainly in the quality of her pronunciations and also the speed and which she speaks. Slow speech is a classic symptom of her tumour location, so any improvement is a good sign here. This might be the steroids causing this improvement so we have to be careful, but we have a lot of fingers crossed we’ll be taking her off the steroids within the next few weeks if we can get her second bag to target dose. We’ll see.

On the 21st:

Amelia has been a bit groggy, fairly lethargic and pretty reluctant to do a lot. […] Because of the lethargy, the doctor in the US has recommended increasing her steroid dose very slightly. We’ll see if this improves things – if it does then this is a good sign. It does all tie in with us increasing her dose, which is now at maximum on her larger bag. No wonder.

Also on the 21rd, just over a year ago, the fundraiser reaches its goal of £200,000, and the tally continues to climb. In the intervening time, however, we hear that Amelia has had some complications with the Hickman line, which has been replaced because of a tear:

She is doing well otherwise, and we’ll be resuming her treatment tonight. She is now walking by herself, her coordination and balance have all improved and her speech is much better. It looks like the treatment is definitely helping her.

In early June, dad is rattled by the deaths of patients Billie B. and Supatra A., who had the same tumor as Amelia, and for a few days he rails against skeptics. Apparently some have been contacting him and criticizing him. This is wrong, in my opinion. Cancer patients have enough on their plate.

On the 21st, we hear that the tumor remains stable:

Firstly we are waiting on a further interpretation from Dr Burzynski, but as we suspected from our own view of the scans this morning, Amelia’s tumour remains stable. In other words, there is no change since the last scan.

The family accepts this as a sign that they have stayed the brain tumor:

We are 100% sure that without antineoplastons, Amelia would either be in a hospice by now or dead. She has a grade 2 tumour, on scans it appears as a grade 3, and it is very large and in a very dangerous part of the brain. Even a few mm of growth would cause a significant impact on her quality of life at this size. We are all walking on a knife edge. Dr Burzynski’s treatment is undoubtedly keeping her alive. I actually want to wave this in the face of all the skeptics we came across along our journey.

It’s worth noting that the tumor hasn’t shrunk. Small victories–including just not dying–are huge when your child has one of these tumors.

Amelia has her 4th birthday on the 22nd of June, and it is celebrated in the papers.

Again, we see that the steroid dose is being increased on June 25th to control the symptoms of the disease:

We have been advised by the clinic to increase her steroid intake back to how it was last week to see if we see an improvement in her. We will then try in a couple of weeks time to reduce it again but at a slower rate, reducing it by 0.25mg instead of 0.5mg per day. The steroid intake is a tricky issue as they are essential and help reduce the symptoms of this awful disease (headaches, tiredness), however long term steroid use is not good and cause side effects such as weight gain, muscle problems.

We still haven’t seen anything that looks like clear evidence of improvement past diagnosis; it sounds like the symptoms return when the steroids are tapered. She seems to be doing pretty well on this dose of steroids, going to school. (Her last day of nursery school is 11 July.)

On July 15th we hear:

Well – we have had a pretty good weekend. I had a truly amazing conversation last night. Purely by chance I’ve been contacted by the mother of another little girl, who is almost the same age as Amelia, who is receiving the same treatment (for longer), with the same tumour (DIPG) and her tumour just shrunk. By 36%. We are so, so pleased. There is so much hope in our hearts now.

I’ll just briefly mention how frustrated we still are to read so much crap on the internet about Dr Burzynski. I feel like we are ‘insiders’, in a way, and know how the whole thing works now. These doubters clearly don’t. The lady I spoke to last night was told her daughter would die. When she went to Burzynski, her doctor shut her off. Refused to speak. Thank God she chose to follow her heart, and not that doctors advice. She might just have saved her daughters life. There is no doubt this works, and we want it in every hospital in the world. We’ll keep spreading the word until it is.

This child, sadly, is now dead.

By August the tumor has not shrunk, but Amelia has been coping very well. A few weeks earlier she had a wonderful day at the zoo. She’s still a little wobbly on her feet and in the pictures her family put on the Facebook page, you can tell that her face is not symmetrical, but by God she’s enjoying her life, which is an immense thing in itself. On the 6th however, she gets pale and sick; when her blood work is done, they find that her potassium and magnesium are way down, though they stabilize her.

On August 8, we hear:

One of the many things I have said throughout this year is that I hope that maybe, one day, I can learn that another child has had success with this treatment because of the inspiration they gained from Amelia. I know of one little girl, Chey, who is waiting to go to the clinic right now. But due to some complications with the FDA and the clinic, there are some delays – but we are all hoping she will get there very soon. We felt so welcomed by the Burzynski clinic and everything we saw there made us puzzled why so many people don’t believe in it.

We just found out exactly what happened. According to an SEC filing:

In a letter dated June 25, 2012, the [Burzynski] informed the FDA of a serious adverse event which may have been related to the administration of Antineoplastons.  On July 30, 2012, the FDA placed a partial clinical hold for enrollment of new pediatric patients under single patient protocols or in any of the active Phase II or Phase III studies under IND 43,742.  The FDA imposed this partial clinical hold because, according to the FDA, insufficient information had been submitted by the Company to allow the FDA to determine whether the potential patient benefit justifies the potential risks of treatment use, and that the potential risks are not unreasonable in the context of the disease or condition to be treated.

According to the mother of patient Alynn H., her understanding was that a child had died (link is password protected). We have not heard anything else, only that the ANP trials, almost a year later, have not started up again and that the partial hold remains.

On August 13, Amelia’s dad posts a video about Amelia’s life since diagnosis. This write up an unusually long post for this blog, and I haven’t done justice to the support the family has received from their community or the sheer number of people who pitched in to help the family, and this video gives a sense of that:

On the fifteenth, we hear that the family is understandably anxious for the tumor to shrink:

Incidentally, we are well aware that a stable tumour is good. Mondays scan was one that we went into thinking ‘if it is stable then great’. I’ve had a few people come up to me and ask “is the tumour shrinking?”. Now I know people mean well – but it is a little like me walking up to somebody and saying “have you won the lottery yet?”. In other words, frustrating. I smile, say no, it will take time, and move the conversation on.

So far, the tumor’s behavior has been utterly unrelated to the dose of the antineoplaston chemotherapy. On Aug 25, we hear that Amelia is tired on treatment and that she has had a progression of symptoms:

We are still looking to increase her dose slightly as she has gained a little weight since Houston so she should be able to tolerate an increased dose (or at least we hope so). We will probably have to increase her steroids in line with this, but we have been considering this anyway as she seems to have become a lot more wobbly lately. We know from the MRI that the tumour hasn’t grown so an increase in her steroids should help this.

Now, I’m not sure how this was verified. The definition of a “stable” tumor can actually accommodate some growth, so, we can’t know exactly what is happening. And we hear from the family a few days later that they have come to a hard realization:

On the 27th, we hear:

Firstly, Amelia hasn’t quite been herself unfortunately. She has been very reluctant to walk, a lot more tired, slow and pretty lethargic. She was sick on Saturday night also. We are reasonably confident we have probably gone too far with the steroid reduction so we have actually increased these slightly again today. We decided we would rather have a happy and more alert Amelia than one who doesn’t want to do too much – so we made this decision today in coordination with the Burzynski clinic. We’ll see how she does. There is a small chance it is the tumour growing, but much more likely given the scans we have that this is due to swelling of the tumour caused by the treatment. Time will tell. […]

The symptoms we are seeing right now are a direct result of the tumour, hopefully due to it swelling, and the steroids will fix this. They are also what we would see if it has grown.

It really, really looks that her wellness is linked directly to how much steroid she is receiving. And here’s another example of something that is…desperately, desperately wrong at the Clinic. The patient is being told that the tumor is swelling because of the treatment. How is it that only at the Burzynski Clinic that getting worse is indistinguishable from getting better? Second point: this is a tumor on the brainstem. If a possible side effect were swelling of the thing pressing against the brainstem, you’d expect that to be on the informed consent form, right? The type of thing that would be among the “serious side effects,” right? It’s not, at least not in a version of the consent form used after Amelia had started ANP:

consent1 consent2 consent3consent2consent3

(Burzynski’s supporters who have been saying that the treatment has no long-term side effects would do well to look at that first paragraph. The paperwork that every patient signs says it can have exactly that.)

On September 5th, we see a candid moment on the facebook page. The parents are committed to seeing this therapy through, but the father has that lingering awareness that this nothing the tumor has not shrunk:

Whether we have returned to a feeling of optimism or not remains to be seen. I still feel uneasy about the fact that we are so far on without the tumour shrinking. It is frustrating, because we have worked SO hard with the treatment – our entire lives are ruled by it and it is almost a full time job sorting it all out – we just share it between us and make it happen. We just know to be patient, and we 100% know it can work.

At this time, Amelia was returning to school (she had already been going to nursery school on treatment). And the way it appeared in the press, and certainly how I and other skeptics read it, it was being promoted as, “See? This treatment is working enough to let this little girl go back,” a human interest story (The Mirror’s coverage was profoundly disgraceful–suggesting UK doctors “refused to treat” Amelia, whereas when you look above you see that in fact: “The doctors here are being very cooperative – but I must emphasise that they are recommending different treatment (chemo) and we have consistently turned this down”), and by god it was good to hear that Amelia was having a great time, but there’s a lot more going on than is contained in the articles. On the 5th we see how much support was needed to get Amelia in. This was not the return of a healed child that everyone took away from the coverage:

“There has been a LOT of organising around this, far more than getting a healthy child to school. We’ve arranged our nanny, we’ve had to work around the school timetable, we’ve had meetings with the school and the teachers and the hospital nurses and made everything happen. The school have been absolutely fantastic every step of the way – we literally cannot fault them.”

On the 8th, we see on the Facebook page:

“On Monday we have a physiotherapist coming to look at her to see if she can get her walking again. I tried a little walking with her today and she is really, really trying. You can see she struggles, like her brain doesn’t know how to do it but the conscious Amelia that we see and know does. It’s a bit like trying to write with the wrong hand – you know what to do but you can’t quite make your hand write as well as the other. She tries to walk, but can’t quite make it all fit.”

This is not a child improving.

September 10, on they were visited by Eric Merola for his utterly uncritical documentary about Burzynski. More on that in a moment.

On the morning of the 15th, Amelia woke up crying with a pain in her head. She went off treatment for a day or so and got better, not trembling, perhaps speaking a bit better. One wonders if she is not experiencing relief from the hypernatremia that can appear alongside such massive sodium doses and can have such side effects.

Amelia has a great couple of days in late September (and she really takes to her school!), and her dad talks about how the awful waiting game goes in between MRIs, which I have learned is how time is measured by cancer patients:

I’ve said this many times before, but the really frustrating thing for me is not having anything really tangible that tells you this is working, until we get the scan image in front of us. This means an 8 week wait between scans when you really have no idea what is going on, and if she gets worse like she did a few weeks back then I think you naturally assume the worst. Then she gets better, and you relax a little!

The October MRI shows no change. But later that month, the family is trying to come to grips with what life will mean in the likelihood that Amelia is not with them. It’s a beautiful post, and I hope you read it. It’s immensely sad and healthy and you can’t help but feel the full force of their grief and fear. This family is mentally preparing themselves for a horrible future, and this makes what happened next absolutely inexcusable by any measure.

By November 19th, Amelia’s right hand is immobilized, a clear progression, and the family gets the results of a recent scan:

What I don’t want to do is get ours, and everybody else’s hopes up about things. I could not bear thinking that this is working and then to be told it isn’t. (emphasis added)

What I will elude to is that the Burzynski clinic feel that there is a cyst forming inside Amelia’s tumour, very slowly. This does seem apparent on the scan images but we want to make sure this has grown over the longer timeframe. A cyst will form where there is cell breakdown, so clearly is a good thing from a ‘killing the tumour’ viewpoint, but possibly bad in that you then have fluid in a very difficult place to get to. We’ll address that little hurdle if we get to it being a problem in the first place.

This sounds exciting (it is), but we are really trying to be careful about getting too much so. Amelia has got worse, although she has had some improvement over the weeks before her MRI. This could be due to a number of factors and we know the tumour has not grown.

Another point with this is that the tumour isn’t shrinking, but if a cyst is forming then it might be some time before the tumour does shrink. We’ve always said that due to Amelia’s tumour being very slow growing, we have more time on our hands more than most kids who get this.

When this news was released on the family’s Facebook page, followed by rapturous confirmation the next day, it was brought to the attention of Orac at Respectful Insolence, who gave an honest medical opinion:

It pains me greatly to do this, because, no matter how I write this, it will be perceived as trying to take away the hope for Amelia’s survival that the Saunders family holds. Such is not my intent, by any stretch of the imagination. However, these “cysts” almost certainly represent areas of ischemia (low blood flow) leading to tissue death as the tumor outgrows its blood supply. This is a phenomenon commonly seen in advanced malignancy. I know this because tumor angiogenesis ia one of my areas of research interest. […]

Sadly, then, seeing “cysts” growing in Amelia’s tumor most likely says nothing one way or the other about whether or not it’s responding to Burzynski’s antineoplastons. That’s assuming that Burzynski’s interpretation of the scans is even correct, which I wouldn’t bet money on. Most likely, these “cysts” indicate that there is no therapeutic effect. I take no pleasure in saying this, but most likely this is true.

Amelia’s dad was understandably upset and actually responded to Orac on Nov 29th, but the day after Orac posted, the family updated their followers:

We know that some people doubt what we are doing. We understand that it is in human nature to question, and many people will not just take something on faith alone. But, ultimately, this is our choice. And that choice seems to be paying off.

Yesterday I sent a CD with the latest MRI scans on to our local oncologist and I’ll be waiting for their opinion. We’ll consider this, and then continue until the next scan and see if the cystic formation that we have been shown grows in some way. I don’t want anyone to think we just take things at face value and accept them – we consider what we see, what we are told, and get as many opinions as we can. We can see with our own eyes though that something has changed with the tumour and we hope this continues. Amelia’s tumour hasn’t enhanced or progressed, so we know it is unlikely to be anything other than cysts, but we will get that second opinion for sure.

Amelia had a magical week. She won a community award, the “Child of Courage” award, and was literally the star of a Nativity play with her friends. The reality of Amelia’s situation soon came upon the family, however. On 2 December:

The truth is, Amelia isn’t getting any better neurologically. We live with her every day and we see it. She is very slowly deteriorating and I think we would be putting our own heads in the sand if we didn’t accept this. On one hand we have the Burzynski clinic who believe the tumour is beginning to die. We are getting opinions here about this theory and we’ll very likely need another scan of a different type in early January to back this up. Everything is based on opinions – and nobody agrees, which makes it all very hard on us.

And the final assessment from the Great Ormond Street Hospital:

We had our meeting at Great Ormond Street yesterday and, sadly, they just don’t have anything for us. We kind of knew this before we went – but wondered if they might have a trial that we could take part in. Unfortunately they don’t.

They felt that Amelia is in the latter stages of the disease, and that what is called ‘progression’ has already started. This means her tumour is growing, the cancer is spreading and we don’t have a huge amount of time left. Again we had already guessed this was happening but it was good in a way to have another opinion of this.

Were it just a one-off bad interpretation of an MRI on the part of the Burzynski Clinic, we might have been able to write this off as a simple mistake. But it’s not. Not by a long shot.

Had Burzynski not used this line on the family who had given him by far the most publicity of any other in years, this recurring theme might have slipped by unnoticed. But it’s clear that this is not just a coincidence, it’s an M.O. predicated on false hope that strings parents and patients along. And it’s been going on for decades! And it leaves patients utterly crushed and confused. The few skeptics who have been working these stories in their spare time have found case after case of patients thinking that getting worse is getting better (a partial, growing list can be found in this post). Consider that the cases written up at this website represent 1/10th of the total cases we’ve been able to find and will be bringing to you, that we have only found a small fraction of cases, mostly from the most recent years, and that this guy has been operating for over 35 years! My god! Imagine what that means!

In light of this, when Eric Merola, in his new movie, says in a series of title cards:

Two months after this interview, Amelia’s tumor began to swell and fill with fluid.

There was confusion and disagreement among between their local radiologists and the radiologists in Houston, [sic] about why this was happening–

So her parents decided to discontinue antineoplaston therapy.

[Then he cuts to a picture of Amelia’s obituary and says,]

“Amelia passed away with her parents by her side on January 6, 2013.”

…it is fundamentally dishonest. There was no confusion. There was the right diagnosis and Burzynski’s diagnosis, a story that’s been spun for decades to desperate parents, and it’s a goddamned disgrace that Merola suggests that the parents’ evidence-based decision could have been related in any way to the outcome.

Instead of the usual plea for a donation to St. Jude Children’s Research Hospital, which researches children’s tumors and provides care for free, we’d like to ask you to make a donation to Naomi House, the children’s hospice center that cared for Amelia’s family in the last days and which seems to be the family’s preferred charity.

If you want to take action, protect the vulnerable, and put reliable information in front of patients who might be looking into this Clinic, the Skeptics for the Protection of Cancer Patients (facebook page here) have put up guidelines about how to boost good information into Burzynski’s search results.

Burzynski Patient Priscilla P.’s Story

Priscilla P. had driven a school bus in numerous cities around the country. In November 1998, she was diagnosed with ovarian cancer. She had radical surgery, a complete hysterectomy and removal of her gall bladder, appendix and lymph nodes. Following that, she endured a year and a half of chemotherapy.

On 8 June 2000, her story appeared in the Atlanta Journal Constitution, raising awareness of a fundraiser for Burzynski:

The chemo slows the cancer, but it’s still growing. But [Priscilla] is upbeat, determined and not about to give up. Her bright blue eyes are animated as she explains Dr. Stanislaw Burzynski’s experimental treatment program in Houston, where she has been accepted as a patient. The treatment is called antineoplaston therapy. Very basically, antineoplastons act as a biochemical microswitch, turning on tumor ­suppressing genes to stop tumor growth.

“My son read about it in People magazine,” she said. “Basically, you have an infusion or take a pill which only attacks cancer cells, without destroying healthy cells. It teaches the cancer cells to die. . . . He’s had over 3,000 patients with great results and very good results with soft sarcomas, which is what I’ve got.”

There’s only one snag to the scenario, and that, of course, is money.

Of course. he has no track record–no basis to claim ANY results with sarcomas because he has never published a respectable account of his treatment. And there is similarly no evidence that ANP is a “biochemical microswitch,” an unnecessarily sciency term if I’ve ever seen it. The article continues:

Since the clinical trial has not yet been approved by the FDA, insurance companies won’t pay for the treatments, which would total about $50,000 for a five-­month program. Like most people, [Priscilla] doesn’t have access to those kinds of funds, and the clinic requires up-­front payment of $20,000 before treatment can be started.

“I can’t understand why insurance won’t pay,” said [Priscilla]. “The cost is a bout the same as chemo, and it would only be for five months, where the chemo can go on indefinitely. . . . Less than five percent of patients are able to go for these kinds of clinical trials because of the money situation, but this is how cures are found. If they don’t have the people to do the trials, how can they hope to find a cure?”

I hate to have to disagree with a patient, but this is NOT how cures are found. Respectable researchers secure funding on the basis of the merit of their ideas, their track record, their ability to convince knowledgeable peers at research foundations to sponsor their research, or their ability to attract investors. Disreputable quacks hit up the dying for cash and bleed the desperate dry, never publishing anything convincing.

Part of Priscilla’s mission, it seems, was to spread the gospel of Burzynski, and she and her family repeated his talking points to the press, who dutifully reprinted it without critical comment, which is deeply irresponsible. I guess fact-checking is something that other newspapers do.

Education of the public is part of what they hope to accomplish as well, said [Priscilla’s daughter].

“I just want people to be aware that these kinds of treatments are available, but people can’t use them because they don’t have the money, and insurance won’t pay,” said [Priscilla’s daughter].

“The other thing is that people like my mom get accepted after everything else is exhausted. She’s had a year and a half of chemo, and she’s completely run down by it. What would have happened if she went (for the treatment) right after surgery? She may have been completely cured by now. If they could go immediately when diagnosed, rather than after chemo brings them to death’s door, how much more effective would that treatment be?”

In all probability, the fact that Burzynski’s patients usually have had prior treatment has lengthened the lives of his patients, as there is no evidence that his treatment does anything. It also gives Burzynski a bogus out for whenever a patient dies: It was the prior treatment that killed them.

On the 22 June an update appears. The fundraiser was successful and raised enough money for Burzynski that he’d let her start.

After the second month of treatment doctors will know whether or not it is effective. If it is not, [Priscilla’s daughter] plans to donate the rest of the money to another candidate for the treatment. The obstacle of money is almost overcome, but now there is a challenge of finding a place to stay during the treatment. [Priscilla’s daughter] is looking into several possibilities, including the Ronald McDonald House, but hopes a local resident with ties to Houston will help. Right now, [Priscilla] is being treated at Kennestone Hospital for blood clots in her lungs.

The Ronald McDonald House has denied Burzynski’s patients housing in the past because of who their doctor is. Think about what that says about the doctor.

An update appeared on November 23 in the AJC. She’s on treatment, and the family is still raising money for Burzynski:

To fund an experimental cancer treatment in Texas, she is selling cookbooks at Curves for Women, a Woodstock business on Main Street that features exercise and health routines for women. The $10 cookbook features low-­fat recipes for busy people and was written by Dawn Hall. The treatment costs  $9,200 a month and lasts five months. [Priscilla], 58, undergoes a 24­-hour­ a ­day infusion of anticancer medication and ingests several dozen pills daily.

Priscilla died of her ovarian cancer on 23 August 2001.

For reliable information about clinical trials, visit clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay.

(Tip of the hat to the Research Ninja, whose hard work made the recent flurry of posts available. Many more to come.)

Burzynski Patient Alice C.’s Story

As Stanislaw Burzynski stands in front of the Texas Medical Board to answer for yet another litany of abominations, patients are no doubt planning to protest in front of the courthouse so they can beg for their lives. Many of his supporters in the past have been then-current patients who were convinced that Burzynski was their only chance at life. Burzynski’s patients often have dismal prognoses and their prospects do not improve when they buy into his medical adventurism. In anticipation of such patients being used as human shields yet again, we are focusing on stories of people who have testified on Burzynski’s behalf, begged for their lives in courts and in the public, but who of course died anyway. These patients, so far, include Burzynski patient Elke B., Burzynski patient Douglas W.,Burzynski patient Janet C.Burzynski patient Sen. Ed G., and McKenzie L. These patients may not be testifying in the upcoming trial, but their stories are perhaps the most important and are far more eloquent and revealing.

Alice C.’s story begins in August 1994, when after 2 years of a steadily growing lymph gland in her neck, she switched to a doctor who took the symptom to be something more serious than a mere infection. In December she received the diagnosis, non-Hodgkin’s lymphoma. She reports that the diagnosis was left unceremoniously on her answering machine, which might have been a massive privacy violation and she has every right and reason to be disgusted by that.

Alice’s story is shared in the book Women Confront Cancer: Twenty-one Leaders Making Medical History by Choosing Alternative and Complementary Therapies, in which she is described as a “real-estate broker, master gardener, and former flight attendant” (33).

In January of 1995, she began working with an oncologist who explained the prognosis, that it was not a curable cancer, but that it was treatable with chemotherapy. She reconstructed the conversation:

“I asked him, “Well, how soon do I need to start it?’

“He said, ‘Today.’

“I asked him, ‘Well, what kind of time are we talking about?’

“He said, ‘Ten years doing chemotherapy, five years if you don’t do the therapy.'” (34)

Alice insisted on an independent second opinion, a completely reasonable course of action. A bone biopsy showed the cancer in the marrow, meaning that the cancer was stage 4. The first mention of Burzynski in the account comes at this cancer center:”

“At the cancer center she asked one of the doctors what his opinion was of antineoplaston treatment, and he dismissed Dr. Burzynski as the ‘pee doctor.’ (His antineoplastons were originally derived from urine.)

Burzynski’s treatment was originally isolated from urine and the claim is that cancer patients lack these endogenous, cancer-fighting compounds. No other physician, researcher, or scientist has ever confirmed this, nor do they recognize antineoplaston as a risk factor for cancer. And the treatment has not gotten any mintier smelling since the early days, it seems. According to one recent patient, whose daughter was being treated with ANP:

BTW if you come over, expect our house to smell funny. Alynn’s medicine has a strong smell. I think it smells like a hamster cage.

The BBC’s flagship investigative journalism show Panorama, in their “Hope for Sale?” which looked into the Clinic. According to the BBC:

It looked like something out of Willy Wonka’s factory. A room full of pipes and noise; a production process that flowed through steel tubes, steaming boilers and glass tanks of bubbling liquid.

But there was one striking difference from a chocolate factory – the whole room smelled of urine.

And USA Today reports that the drugs have an unpleasant odor. Burzynski’s nickname, it seems, is not unearned.

Alice talked to other lymphoma patients and eventually decide to pursue alternative medicine. Part of her regimen was “a concoction of mistletoe and a few other ingredients” (35). And this is the interesting bit. A few months after deciding to not pursue traditional therapy, around February of 1995, she got the results of a scan. Her doctor told her:

“…that I was a case of spontaneous remission. This was either from the herbs that I was doing or from what doctors say about lymphoma, the waxing and waning process.” (35)

When there is no need to invoke the magic potion thrown together with no demonstrable medical skills, don’t. This type of cancer waxes and wanes. It would seem that whatever she happens to be doing as the cancer runs its natural unopposed course in her body will share credit for what the cancer would be doing anyway. This will include Burzynski’s treatment and all the other alt med remedies.

As is often the case, Alice’s doctors do not want to work with Burzynski. According to her story:

When she became [Burzynski’s] patient, she found that most other doctors were unwilling to work with her. ‘I didn’t get help from anywhere. I felt abandoned and alone.”

This, I’m certain, is misleading. Burzynski’s treatment requires a doctor to work with the patient in their home state while they are on treatment. Patients often have a hard time finding someone, especially finding a qualified oncologist, who will work with the Clinic. It’s not that they won’t work with the patient, you see, but with the Clinic. She has a hard time getting the port installed in her chest, where she will take in the ANP. When she does, she has numerous complications, including the port breaking and a piece of it traveling to her heart, where it needs to be removed. As far as I can tell, these are unnecessary complications of the treatment. These are the reasons why doctors don’t work with Burzynski.

Because of complications, including pain from necrotic tissue and swollen lymph nodes, she went off of ANP on 26 October 1996. A few weeks later, she learns that there was a 58% reduction in her cancer. (Of course, it’s still a waxing and waning cancer, so there is no need to give Burzynski any credit.)

It is during Alice’s treatment that Burzynski’s big fraud trial was underway. She appears in the Dallas Morning News at the height of the drama:

“The FDA is violating my constitutional rights to treatment,” said Alice [C], a 45­-year ­old Dallas woman suffering from non-­Hodgkins lymphoma. The agency, she said, “has made a list of who will live and who will die. I guess I’m not on the list.”

The article gives an example of a strategy that has worked for Burzynski in the past, letting his desperate patients stand as human shields between him and justice:

“Dozens of Dr. Burzynski’s tearful patients gathered Tuesday to accuse the U.S. Food and Drug Administration of murder for obtaining a court order that could close his practice beginning Wednesday.”

Alice had not ruled out chemotherapy, and she saw it as something to fall back on after she tried alternative medicine. We don’t know if she did rely on chemotherapy in the end. She died on 10 December 2004, however, right in line with her original prognosis if she took chemotherapy. But we simply don’t know. There is no reason to think that Burzynski’s treatment helped her, as the disease would flare up and go into remission on its own. Even if she never had conventional therapy, we can’t in principle know that she wasn’t a statistical outlier or if Burzynski’s treatment helped because both outcomes look exactly the same.

And that’s why testimonials are not evidence of efficacy.

Burzynski Patient Courtney H.’s Story

In October 1997. 6-year old Courtney H. started to have neurological symptoms, including headaches, trouble hearing, stumbling, and double vision. On 11 November 1997, Courtney was diagnosed with a tumor on her brain stem. According to a first-person narrative authored by her parents in February 1999, the prognosis was about 3 months. (This is of course, highly variable.) Courtney underwent 6 weeks of radiation therapy, some 33 treatments. The parents were clearly shocked by the weight gain caused by the steroids that her doctors put her on, likely to reduce swelling around the tumor.

After the radiation treatment, Courtney went to North Carolina to be put on a chemotherapy regimen at Duke. She had two more months of this treatment. Courtney, then, had two therapeutic regimens before she went to the Burzynski Clinic. This is important to consider when we see what came later. Both chemotherapy and radiation can kill cancer for months after they have been administered.

In April 1998, Courtney’s family took her to the Burzynski Clinic. According to the father:

With no time to waste, we packed up and drove to Texas. After 1 month on antineoplastons, the tumor had decreased by 30%. That was the best news I have ever had in my entire life. I felt as if a bulldozer had been lifted off my back.

The reasons that there are controlled trials is to determine whether or not it was the chemotherapy Courtney had just finished, the radiation that she had, the antineoplastons, or some combination of these that contributed to the reported decrease. It’s hard to tell what improvement, if any, she has experienced with respect to this reported decrease, as the father says:

However, Courtney was still suffering. The steroids had put her in a wheelchair because her feet were so swollen she couldn’t walk without crying.

Apparently, she is still on steroids at this point. (Steroids seem to be part of the routine at the Burzynski Clinic; she was on steroids before Burzynski as well.) Three months after the family started treatment, in the summer of 1998. the family was trying to taper her off of the steroids:

Courtney has done wonderfully on antineoplaston therapy. After 3 months of treatment, her tumor decreased by about 50%. When she was being tapered off the steroids, however, Courtney developed pneumonia, became dehydrated, and went into a coma. We were air­lifted by helicopter to Children’s Hospital. She was unresponsive for 3 days. She had a catheter inserted to collect urine, and IV in her arm, a tube in her nose to her stomach to remove excretions, and a tube down her throat so she could breathe. A spinal tap was performed. The doctors initially told me Courtney was bleeding in her brain. Later, we were relieved to find they were wrong. What they believed to be bleeding turned out to be calcium deposits. After she came out of the coma, she stayed in the hospital for another week. Then she came home, and we put her back on antineoplastons.

The calcium deposits in the brain can appear following inflammation of brain tissue. The doctor’s suspicions of stroke, however, might not be unfounded. Children have had strokes while on antineoplastons; take the cases of Elizabeth K. and Haley S. (and the Clinic’s heartless response to Haley’s stroke), for instance.

In a brief Cincinnati Post article from 30 July 1999 we hear how much this treatment is costing Courtney’s family:

The controversial treatment, which was created by Dr. S.R. Burzynski, features the use of a substance called antineoplastons. The family struggles financially because their medical insurance won’t cover the $14,000 per month cost of the treatment, which is considered experimental.

Yes. Going to Burzynski bankrupts families, who turn to their community who often bankrolls the dubious patent medicine. Take for instance the junior-high student who raised over $3,600 for Burzynski, as reported in the Post on 4 March 1999. Or the $42,000 raised at a single fundraiser for Courtney, according to an article from June 24, 1999. Communities rally behind the sick. However, would they be so generous if they knew what it was funding?

Even in the laudatory report written by Courtney’s parents, it’s hard to see anything that looks like progress, as he reports that after she returned to treatment:

Unfortunately, that was not the end of Courtney’s problems. I noticed some discharge around her C­-line. It was infected and had to be removed. Courtney was given antibiotics.

Infection at the site of the port that is placed in the patient before administering the ANP is a fairly common complication (see the cases of Keith G.Erik M., Leo D., and James N.) and one that the Burzynski has had trouble reporting to the FDA in the past, at least according to a recent inspection, when the FDA told Burzynski:

“You failed to protect the rights, safety, and welfare of subjects under your care. Forty-eight (48) subjects experienced 102 investigational overdoses between January 1, 2005 and February 22, 2013, according to the [trial number redacted] List of Hospitalizations/SAE (serious adverse events) [redacted]/ Overdose [redacted]/Catheter Infection report. Overdose incidents have been reported to you [….] There is no documentation to show that you have implemented corrective actions during this time period to ensure the safety and welfare of subjects.” [emphasis added]

Sadly, more complications are lurking around the corner for Courtney:

After only a couple of more months of antineoplaston therapy, Courtney again began to have serious problems. She stopped eating, developed prolonged diarrhea, nausea, and vomiting. She stopped drinking, too. Therefore, her sodium levels became high. We found ourselves in and out of the emergency room. Finally, we decided that Courtney needed a feeding tube. The tube is connected to pumps that provide 100 cc of formula and 300 cc of water to Courtney every hour. From April 1998, when she began antineoplastons, to February of 1999, Courtney’s brain tumor has decreased by 75%.

It’s hard to imagine how this patient is benefiting from this supposed decrease. Even in the father’s story, things seem to be getting steadily worse. Indeed, when the parents’ account was written, Courtney is not attending school, attending ballet, running, or playing.

The father seems to think that the side effects are caused by the radiation. Of course, the high sodium levels are a well known side effect of antineoplastons–patients report having to take in huge amounts of water to keep their sodium levels in check–and the same type of complication may have killed Josiah Cotto, and it certainly led to an overdose in Luna P., whose regular doctor reacted like this when he heard how high her sodium level was (178):


Indeed, hypernatremia is the top entry on the lengthy list of side effects that appear on the antineoplaston informed consent sheet that every patient receives:




By February of 1999, Courtney’s family has raised $100,000 for Burzynski, according to the family’s story.

In December 1999, according to the Post in March 2000, the family hears that the tumor is 90% gone, though if it is true, there is nothing to confirm that it was that antineoplastons and not all the prior treatment.

In May 2001, a magician decides to unicycle across the country to raise funds for Courtney. The snippet from the May 13th Cincinnati Enquirer is revealing:

“I really have two reasons. One, I want to raise money for Courtney. Two, I want to raise awareness of Dr. (Stanislaw) Burzynski and his Houston clinic.” “Courtney” is 10­-year­ old Courtney [H], suffering from an inoperable brain stem tumor and receiving Dr. Burzynski’s $7,200 a month treatment. It’s considered alternative, so insurance doesn’t help. Mr. Dalton’s brother Mark had the same treatment last year and his tumor was nearly gone when he had to go off the medication. He died in March 2000.

Imagine that. Tumor almost gone, patient dead shortly thereafter. This is not an aberration; it happens over and over and over. In another report, from 25 Jan 2001, we see this account of Mark’s tumor:

The treatment got rid of Mark’s tumor, but other complications arose. He died in March.

Bunk. But look at how Courtney’s parents describe what is happening:

However, many of the problems Courtney has experienced and is now experiencing are side effects of the radiation therapy she received.

It’s the same story, over and over. To the true believer, it’s never that the treatment didn’t work. It’s always something else.

Courtney died on 20 March 2002.

A side note. The account that this was based on comes from the Burzynski Patient Group. Her story has disappeared from that site:


This is one reason that this site exists, to make sure that nobody’s story disappears down a memory hole. All the stories are important, not just the ones that Burzynski’s supporters think make him look good. We have far more stories than the Burzynski Patient Group will ever have, well over a thousand at this point, and we’ll tell them all.

Burzynski Patient Chelsea S.’s Story

In May 2012, 3 months after she gave birth to her second set of twins, 35-year old dancer Chelsea S. lost vision and experienced numbness in one half of her body. She was diagnosed with a brain cancer almost never seen in adults, a pilomyxoid astrocytoma (PMA). It was near the brain stem and could not be removed, though she received a diagnosis after a biopsy. It appears that she also had radiation. In August, after the radiation, she was told that palliative care was her best option.

The family, understandably was upset and sought another option. As recounted in the Vancouver Sun in November 2012:

They weren’t ready to accept that Chelsea would die; within a matter of days, they had heard through friends of the Burzynski clinic; a quick search online brought them to his website. Steyns’ sister Emma filled out an online application, sent in a package of Steyns’ medical information, and two weeks later the sisters were on a flight to Texas.

They didn’t balk at controversy surrounding the doctor, or the cost: $35,000 up front and up to $30,000 a month for the targeted gene therapy treatment

According to a facebook page that was set up in Sept 2012,

Since her diagnosis, Chelsea’s case has been overseen by a team of doctors from both Lion’s Gate Hospital and the B.C. Cancer Clinic. She has just completed an aggressive round of radiation treatment but unfortunately it has not stopped the tumor growth and her doctors have said that they are unable to offer her any other conventional medical options. The Burzynski Clinic […] in Texas can offer her Personalized Gene Targeted Cancer Therapy which has shown huge success in the the treatment and remediation of Chelsea’s type of cancer, however because the treatment is still in its trial phases, it will come at a huge cost.

Usually, experimental therapies are provided at no cost to a patient. This may technically be true at the Burzynski Clinic, where they happily tell US senators that there will be no charge for the experimental agent, but then charge out the nose for all sorts of “support” services. How much in the case of Chelsea?

$35,000 up front and up to $30,000 a month for the targeted gene therapy treatment.

Now at this point it seems that it’s unclear which form of quackery Burzynski is pouring into her veins, whether it is the “antineoplaston” treatment, a fraction of human urine a lack of which is not recognized as a cause of cancer but which Burzynski “replaces” anyway, or the untested, potentially synergistically toxic chemo cocktail based on the genetic equivalent of palm reading that he calls “gene-targeted therapy.” Both are dangerous and unproven.

Burzynski is treated with well-earned contempt by physicians interviewed for the Vancouver Sun piece:

Dr. Chris Daugherty, an oncologist and international authority on medical ethics and end-of-life decision making at the MacLean Centre in Chicago, draws a line between patients pursuing treatments based on “real trials” and Burzynski, who he says is “off the bell-shaped curve 95 per cent of us practice on.”

Daugherty said it would be unfair to compare Burzynski, whose treatments have not been shown in any randomized study to be effective, with doctors conducting clinical trials at more traditional medical centres […].

Chelsea has her first appointment on Sept. 18th spends several weeks in Houston, suggesting that this is in fact that ANP treatment, Burzynski’s patent medicine. Of her first day, we hear on her blog:

Then we spent the rest of the day at the Burzynski Clinic where I met the Big Guy. See pic. They reviewed my files and images in a very formal way. We were interviewed by 2 separate doctors and then the 2 of them together with Dr. Burzynski. Then after they accepted me into phase 3 of the trial of the Antineoplastone program, they send you to financial department to drill you and see if you can actually afford it (thank goodness for the run). Next they take you for a physical – blood work and an exam. Now we wait for the FDA to approve my case which needs to happen before I can start (up to 3 days). We felt very excited leaving the clinic. A new pathway for me and some real hope to kick this tumour into remission!

Yep. They give you hope and then they shake you down for cash. It’s called the hard sell, and any number of patients have reported that. It’s curious that they think that they are in a trial, where it sounds like they are applying for a special exemption with the FDA. A few days later, we hear:

After receiving FDA approval, Chelsea has begun her customized treatment. She  had some wonderful days exploring neighboring towns with her sister […] last week before treatment started Thursday, and on Monday was joined by her brother […]. Despite a few challenges, she is doing well and continues to express her gratitude for everyone’s love and support here at home.

What are the few challenges? Perhaps the side effects of the ANP:

She has had difficulty tolerating the treatment, and is experiencing severe side-effects including dangerously low potassium levels, temporary blindness and severe pain.

It is chemotherapy by any reasonable definition. And isn’t temporary blindness her original symptom? Nonetheless, Chelsea’s sister is a nurse and is taking care of her, and we get a peak at what the family was being told at the Burzynski Clinic:

“Before we went to Texas I was just sad all the time,” [Chelsea’s sister] said. “Texas really gave us a boost because the nurses and doctors are saying they’ve seen patients come in totally debilitated, as bad as Chelsea, and walk out.”

Notice this is very different from actually seeing the patients get out of their wheelchairs. And since the nurses have a nasty habit of saying stupid things to patients at the clinic, like, “Your side effects are a sign the ANP is working,” one should take their words with a grain of salt substitute. They return from Texas on October 11. At any rate, Chelsea is very popular and her fundraisers, by November, have raised over $200,000 for Burzynski.

Another thing that sticks out from the Sun article, is how puffy Chelsea’s face is. This is likely a side effect of the steroids that Burzynski puts his patients on.

Just before Christmas, Chelsea’s facebook page reports, in between massively successful fundraisers for Burzynski:

Christmas has officially come early this year. Great news yesterday! Chelsea’s Tumor has shrunk 13% since the last MRI which was in October and this result has been confirmed by Doctors both here as well as in Texas.

On Feb 21 we get this update:

Update time: Chelsea had a scan on Feb 5th which again showed continued reduction of the tumor. This was not a surprise to her or her family as her movement and strength in both her legs and arms continued to improve also.

It’s been a rough month with colds which have been a challenge for Chels, but she has faced them all with a smile. Her best week included watching her “kids” dance at Snowmotion. Her next scheduled scan is in March.

We don’t hear about the March scan, only that she is on vacation with her family. The next update relevant to her treatment comes on May 24:

A very brief update on Chelsea: She is at home with [her husband] and the kids, and is continuing to receive cancer treatment. Some days are better than others as is to be expected, however she faces each one with positivism, spunk and resilience as only Miss Superwoman can.

Chelsea S. died on June 23rd.

For reliable information about clinical trials, visit to clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski.

Burzynski Patient Derek W.’s story

As Stanislaw Burzynski heads to court again to answer charges made by the Texas Medical Board on behalf of a variety of patients, he is doubtlessly preparing by getting the testimony of current and former patients. In anticipation of this pony’s one trick, we are telling the stories of patients who have testified on Burzynski’s behalf over the course of his long, dubious career and see where they are now. Much of what follows is based on reporting from The Oregonian and on written testimony presented to Congress in 1996 in the same hearing in which Douglas W. testified.

Derek W. was just 7-years old but already knew what he wanted to be when he grew up: a preacher. His proud parents nicknamed him the “preacher in sneakers” and ensured he was active in their growing church congregation. Derek also enjoyed participating in his local cub scout troop.

On November 6, 1995, Derek’s parents received the devastating news that Derek had a deadly tumor in his upper brain stem. According to his dad, the news was bleak, so they scoured the country for a solution:

Without treatment he was given 3-6 weeks to live. With paliatory treatments, primarily radiation, he was given between 4 and 18 months. As any parent in our position would, we researched all known traditional and non-traditional cancer treatments.

The doctors’ recommendation of radiation was not likely to be curative. So the family decided to try Burzynski’s treatment antineoplastons because it “appeared to be based on firm scientific data.” Derek’s dad said Burzynski “felt that his success rate was as high as 20%,” but the trusting father acknowledged that the number “was not scientifically documented”.

Sadly, the data released by the Burzynski Clinic over the decades has been notoriously misleading. Indeed, the 20% survival number remains unsubstantiated even two decades later. And yet, other desperate families are still under the false impression that antineoplastons have been demonstrated to be safe and effective.

For example, the family of McKenzie L. thought she had a 27% chance of survival by being pumped full of Burzynski’s concoction. To a desperate parent, a 1-in-5 or better chance certainly sounds infinitely better than the 0% chance that brutally honest cancer doctors sometimes are required by ethics to provide.

The mother of Brendan B., who paid $10k to the Burzynski Clinic in 1991, describes the psychology in a 1996 New York Times article:

“I would have gone out and stood naked in traffic,” Mrs. [B] said. “I would have died in his place if that were possible. I would have done anything to make this child live.” Dr. Burzynski, she said, “offered us a thread to cling to.”

When she and her son Brendan were in Dr. Burzynski’s office, she said, “a very interesting thing happened.” She explained: “I got caught up in this whole thing with all these sick people, people coming and saying they were cured. I feel so stupid even talking about it because I am intelligent and educated and so is my husband.”

She believed in Dr. Burzynski, in spite of herself she said, because “this beautiful child is dying and here’s this person who may possibly have something.”

In addition to Burzynski’s treatment, Derek received radiation as recommended by his oncologists. His father is hopeful that the tumor’s lack of growth is a good sign:

We had an MRI that showed no new tumor growth since we began Dr. Burzynski’s medicine. We still feel [Derek’s] situation is shaky, and this does not mean the medicine is working for sure. It is our one and only hope. Without it, he for sure would die. With it, we still have a chance.

If only Derek’s parents had been able to speak to Mrs. B, who said, “It’s fine to say Dr. Burzynski offers hope, but you have to have hope in something that’s not ephemeral.”

And if only Derek’s parents had reviewed the results of a 1982 visit to the Burzynski Clinic by Canadian doctors. The doctors’ report contained a horrifying picture of what was happening in Houston, according to the 1996 NY Times article and a Usenet posting:

We were surprised that Dr. Burzynski would show us such questionable cases. We were left with the impression that either he knows very little about cancer and the response of different tumors to radiation and hormonal measures, or else he thinks that we are very stupid, and he has tried to hoodwink us.

As we look back over the cases were were shown, we are left with the impression that the only patients who are still alive either had slowly growing tumors, or had received effective treatment before being referred to Houston.

And the Canadians reportedly concluded:

After reviewing 20 case reports, selected by Dr. Burzynski as his best examples of clear cut responses to Antineoplastons we were unable to identify a single case in which therapeutic benefit could be attributed to Antineoplaston.


We believe that it is unethical to administer unproven agents such as Antineoplastons to patients without satisfying the requirements of the FDA and an ethics committee, that the minimum standards for human experimentation are being met. We also believe that it is immoral to charge patients for this unproven, experimental treatment.

What’s true in 1982 is still true today, since the American Cancer Society agrees that “there is no convincing evidence showing that antineoplastons actually work.” In fact, Burzynski has, according to FDA inspection records, a horrible time satisfying them that his evaluations of his trial outcomes are accurate. Indeed, the FDA recently found that his outcomes are inflated 2/3 of the time.

Derek died of his cancer on December 13, 1996, just over 11 months after his diagnosis. There is no available evidence that antineoplastons improved Derek’s survival.

Derek’s parents wanted to create a special memorial to their son. So when their church expanded to include three 40-foot crosses, they made sure one of them was dedicated in memory of him. The crosses were made of steel and shared their message at least 2 miles away.

Derek’s mom thought the memorial cross was a fitting way for her “preacher in sneakers” to continue to preach: “You want a chance to remember the person who died and to have their dreams live on. [The cross] is a testimony to our hope.”