How St. Jude Children's Research Hospital
Treats Children with Brain Tumors
St. Jude Children's Research Hospital in Memphis, Tennessee represents a wonderful idea as envisioned by a very caring and generous human being Danny Thomas. Mr. Thomas saw a need for a hospital that would focus solely on research and treatment to cure pediatric cancers. He also wanted a hospital where a parent's lack of funds would not stop his or her child from getting quality care. This humanitarian acted on his vision and persevered to make this hospital a reality. But if the Thomas family and their supporters understood what goes on inside those walls today in respect to brain tumors they would surely wonder what happened to that virtuous vision.
According to statements published by St. Jude:
Are these remarks true? We contend that they are not, based on our research and our experience there from September 14, 1998 to September 23, 1998 with our son. Promising non-toxic therapies are ignored while oncologists use children with brain tumors as guinea pigs in experiments of highly toxic and carcinogenic drugs. Below is an overview of our experience at St. Jude followed by what our research has revealed about many of their brain tumor experiments.
Alexander was diagnosed with a brain tumor (medulloblastoma) in August 1998 and we wanted to explore every treatment option, leaving no stone unturned. Mike visited St. Jude the second week of September in 1998 to meet with Drs. Richard Heideman and Larry Kun. Dr. Heideman is one of the lead pediatric oncologists at the hospital and arguably one of the most prominent, respected and experienced pediatric oncologists in the country. Dr. Kun heads up the radiation oncology department at St. Jude and he is also highly respected and one of the top pediatric radiation oncologists in the U.S.
Heiderman offered Mike an overview of a new trial for children with medulloblastoma. He explained that this protocol was a more rational approach to previous applications of chemotherapy and was designed to deliver the drugs directly into the brain. Mike returned to Los Angeles and we decided that we would take Alexander to St. Jude. On September 13th we took a "red-eye" and arrived at the hospital on the morning of September 14th. We were there for a total of 10 days.
The hospital is very impressive and very much like a sparkling new office building with a stone and glass exterior and modern landscaping. Inside there are high ceilings, shiny reflective floors and plenty of bright colors. There's a grand piano in the lobby. Toys can be found everywhere and the staff is almost uncomfortably nice. Smiles appear tattooed on everyone's faces. It was the most beautiful and friendly hospital we had ever seen.
We soon found out that if you are a parent with a child with cancer, St. Jude pays for your stay at a hotel, pays for your three meals a day (for the child and one parent), furnishes a snack bag in the afternoon, and provides a free shuttle bus to and from your hotel and the hospital. If you decide to use your own car because you live near the hospital, the hospital reimburses for mileage. And if your insurance refuses to pay for anything, St. Jude's picks up the entire tab.
When you walk through the hospital door in the morning you line up with your child. There, at the check-in window, a friendly admissions person attaches a little bracelet (a different color for every day) around your child's wrist and you are handed an itinerary of medical tests and procedures that are scheduled for that day. Alexander's bracelet had his name, his account number, the oncologist's name, the date and the letters "BT" for Brain tumor. Children with leukemia have "LK" on their little bracelets for leukemia. So everybody knows and nobody gets confused.
There are many children being treated for cancer there. We still remember some of the children that we saw. Lethargic ten-month old babies on chemo, children with skin that appeared torn-up and burned because of the high-dose chemotherapy followed by bone marrow transplants they received, bald-headed children walking the halls with dark "X's" painted on their shaved skulls to provide targets to line up the radiation machines. Desperate parents chasing every rumor of a new treatment after their child has had all the chemo and radiation possible and the cancer has returned with a vengeance.
When Alexander's oncologist, Dr. Heideman told us that he scheduled a "small operation" to insert an ommaya reservoir into our son's brain so that a chemo drug could be injected directly into his brain and spine every other day, we had some doubts. We did not want to put Alexander through a third brain operation (he had already had two surgeries). In addition, Dr. Heideman couldn't tell us very much about the drug (maphosphamide) because it was a new therapy. He told us that we had to trust him. Admittedly, after our experience at UCLA, we had difficulty simply handing over our child's life. Perhaps some parents can do this but we could not. We wanted some information about this new drug that he wanted to inject into Alexander's brain and spine every couple of days so we began to research. We called and spoke to the oncologists in Europe who had used the drug before. We even located the manufacturer in Germany and spoke with the two doctors who invented the drug. They all asked us, "Why do you want to use this drug on your child?" We said that frankly we didn't know. They told us that the short-term side effects, the long-term side effects and the efficacy were all unknown.
When we had a meeting with Heideman and his nurse assistant, we laid everything out that we had learned. The oncologist admitted that it was all true. I asked Heideman, "Do you plan to use Alexander as a little white rabbit?"
He looked at me and said, "Yes."
His assistant cringed. She was embarrassed.
He was obviously not happy with us. We wanted to make an informed decision. He wanted us to trust him. He explained that we didn't have any other options and that we had one hour to decide what we were going to do. He gave us a release to sign and left the examination room. We went to the cafeteria to think.
Exactly one hour later, Heideman walked over to our table in the cafeteria and asked for the signed release. Still undecided, we signed it and gave it to him. Two days later, we checked out of the hotel and returned to California. This left a bad taste in Heideman's mouth. Later he would call our oncologist in California and discuss the need for a court order so they could take Alexander from us in order to "treat" him. This is what our oncologist in California, Dr. Douglas Hyder wrote in Alexander's medical chart:
How many other children have been used as "little white rabbits" and what have been the results? How successful are their chemotherapy experiments in young children with malignant brain tumors? To find out we read the medical abstracts and articles that Heideman and his colleagues have published. The story they tell as written in their own words is damning.
Below are the results of Dr. Heideman's chemotherapy experiments on children during the last twelve years. The quotations come directly from the articles that he has co-written as published in peer reviewed medical journals. As mentioned above, Heideman is arguably one of the top pediatric oncologists in the country. He is no better or worse than any other pediatric oncologist who inexplicably submits children to the same drugs again and again even when:
Please note how these drugs are shown to be ineffective and then reused on a new group of children. This conduct is going on right now. Keep an eye out for the drug topotecan. This ineffective drug has been used with terrible results over and over and yet today St. Jude is calling this drug "new" and "promising." Also watch out for cisplatin, cyclophosphamide, and vincristine for the same reasons.
Drug causes disorientation, delirium, hallucinations and is ineffective against cancer
In this experiment, Heideman and his colleagues use a chemotherapy drug named "spirohydantoin" or "SHM." The drug results in "disorientation, delirium, or hallucinations" in 9 of the 23 children. Seventeen of the children were evaluable for response (which suggests that six may have died while getting SHM). Of those seventeen, there was "no objective tumor response" which meant that the tumors stayed the same size or continued to grow in every child.
Children are administered a drug that is listed as "Reasonably Anticipated to be a Human Carcinogen" by the U.S. Department of Health and Human Services
In this experiment, 60 children are given another chemotherapy drug called "thiotepa." It appears that eight children died while getting the drug (they were not "assessable") and 49 of the remaining 52 children do not have an "objective response" which means their tumors either continued to grow or stayed the same size. Thiotepa was listed as "Reasonably Anticipated to be a Human Carcinogen" in the Second Annual Report on Carcinogens published by the U.S. Department of Health and Human Services (DHHS) in 1981. DHHS would "upgrade" thiotepa to a "Known Human Carcinogen" in 1998.
Two drugs are injected into children- one is a known human carcinogen and the other is anticipated to be a human carcinogen according to U.S. Department of Health and Human Services
In the next experiment, thiotepa is used a second time, this time with another chemo drug called cyclophasphamide. Cyclophosphamide was listed as a "Known Human Carcinogen" in the First Annual Report on Carcinogens published by the U.S. Department of Health and Human Services in 1980. Children were administered this drug regardless of its status as a substance that is known to cause cancer in people. In other words, children with cancer, were injected with one drug that was (and still is) listed as a known human carcinogen (cyclophosphamide) and another drug (thiotepa) that was listed as anticipated to be a human carcinogen (and is now listed as a known human carcinogen).
In this experiment thirteen children were first injected with the carcinogens, then implanted with radioactive iodine, and then had their brains irradiated. As a result of this "treatment," twelve children had mucositis (necrotic inflammation of mucous membranes), one had cardiomyopathy (heart disease), one had acute abdomen pneumonitis (lung inflammation), and two had "infection." In addition, the brains of three of the children became necrotic (brain tissue died) and one child died of "toxicity." The results? On average, the tumors returned in nine months and the children died within 14 months.
Carcinogenic and hazardous chemo resulted in "early termination" of the experiment
Children are given a toxic drug that oncologists admit is ineffective because they have used it before with terrible results
The next year, Heideman and his colleagues published the results of another chemotherapy experiment on children. In this disastrous experiment, it appears that sixteen of 87 children may have died immediately (they were not "evaluable"). For the others, a couple of children (one out of sixteen for medulloblastoma) had their tumors shrink temporarily. The abstract does not mention how many of these children soon died but if only a couple out of 87 had a response this suggests that this experiment was a disaster. The abstract concludes with, "IFOS (ifosfamide) monotherapy possesses little clinically meaningful activity in brain tumors." This massacre was entirely foreseeable for at least two reasons:
To summarize, Heideman and his colleagues used ifosfamide in children two years before and it did not work and they acknowledge this. However, this admission does not stop them from injecting this toxic drug into 87 more children several years later. Predictably, many of these children died with no quality of life. Toxic effects included: three children dead from infections ("sepsis"), three children with significant kidney damage ("renal tubular dysfunction"), one child with hematuria (blood in urine), one child with neurotoxicity, and three children had salt depletion ("hyponatremia"). The study concludes by stating that ifosfamide "possesses little clinically meaningful activity in brain tumors."
That same year, Heideman published the results of another experiment in which he gave 20 children the drug thiotepa that had already proven its ineffectiveness twice before. You may recall the articles on the thiotepa experiments quoted above. In one experiment, sixty children were given the drug, it appears that eight died immediately and 49 of the remaining 52 children had their tumors unaffected by the drug. In another experiment, the tumors returned in nine months and the children died within 14 months on average. Even with that appalling history, here they are injecting the same poison again. This time they added more chemo to the cocktail. The results are predictable. According to the paper, "poor survival led to early study termination " due to "an unacceptably high rate of disease progression." This experiment was such a failure that they pulled the plug. Given the drug's track record, why did they sacrifice more children to experiment with this toxic agent?
Another "inactive" drug is used on children
In this next experiment, Heideman and his colleagues continue their chemotherapy research on 45 more children. Nine children with high grade glioma are administered another chemotherapy drug called topotecan. It did not work in any of them. Nine other children with medulloblastoma were given the drug. It didn't work in any of them. Fourteen children with brain stem glioma were also administered the drug. It did not have any positive effect in them either. Out of 45 children, six have their tumors temporarily shrink for a few weeks. The conclusion? According to the report, Topotecan is "inactive in high grade gliomas, medulloblastomas, and brain stem tumors."
and carcinogenic drug that led to "poor survival" and required
early termination years before is given to more children
Seventeen of 23 children have their cancers spread while being administered drugs that had already proven to be carcinogenic and ineffective
In this experiment, twenty-three children, three years of age or under with medulloblastoma, are given chemotherapy. Nearly all the drugs have been used before with miserable results. One of these drugs (cyclophosphamide) is listed as a known human carcinogen and the others had already proven their ineffectiveness. Not surprisingly, for seventeen of these twenty-three children their cancers spread while they are getting the drugs.
Same drugs result in death
Drug that oncologists labeled "inactive" is used again on children with disastrous results
In the next experiment, the drug topotecan is used again. You may recall that it was used in 1996 with such miserable results that the oncologists described it as "inactive." (Nine children with high grade glioma, nine children with medulloblastoma, and fourteen children with brain stem glioma were injected with drug. It did not work in any of them.) But here they are giving the same drug to 88 new children. Of course, the results are predictable. The cancers do not regress in any of the children. In fact, 68 of the 88 children have their cancers spread within two months. Heideman and his colleagues describe the drug as showing "insufficient activity."
Repeatedly inject chemo directly into children's brains and spines
The next chemo experiment Heideman conducts with children with medulloblastoma and other brain tumors isn't even published yet. The reason we know about it is because he tried to recruit Alexander. We declined. This one involves drilling into the skull, installing a special reservoir, and injecting chemotherapy directly into the brain. It also involves injecting chemo directly into the spine through frequent spinal taps. After that, the children have their brains radiated. (Pilot Study of Systemic and Intrathecal Chemotherapy followed by Delayed Radiation for Infants with Embryonal Intracranial Central Nervous System Tumors - St. Jude Children's Research Hospital Protocol BB98 - See http://www.stjude.org/brain/protocols-BB98.htm)
We don't know the results of this experiment yet. One can only imagine.
Returning to St. Jude's public statement about their treatment of brain tumors:
that brain tumors in children require special care and consideration.
At St. Jude, your child will receive the most advanced treatment from
an experienced, multidisciplinary team of healthcare specialists who are
dedicated to treating children and giving them the best chance of survival
and quality of life
The Brain Tumor Program at St. Jude prides itself
in developing new and innovative therapies for our patients
to treating a patient with any new approach, we conduct extensive tests
in the laboratory to determine if this therapy is effective and how the
drug can best be used in our patients."
The answers to
these questions are echoed in the latest St. Jude protocol for pediatric
brain tumors entitled "Treatment of newly diagnosed medulloblastoma
and supratentorial primitive neuroectodermal tumors (St. Jude protocol
SJMB96)." This protocol is currently accruing children for this experiment.
What "new" and "innovative" drugs does this brand
new protocol use? Incredibly but predictably, they are the exact same
carcinogenic chemicals that have been used with such disastrous results
during the preceding years. But they don't tell the truth. Below is St.
Jude's description of this new therapy:
But topotecan is not "new," it is not "very promising," and it is not "active" based on published papers by St. Jude's own doctors. Do you recall what they wrote in 1996?
Or you may recall this quotation from a 1999 article in which 68 of 88 children had their cancers spread within two months while getting topotecan.
So how can they now claim that topotecan is a "new drug that has been very promising in our pre-clinical work and studies suggest it is active against primary brain/spinal cord tumors." It is utterly untrue.
And what about the drugs cisplatin, cyclophosphamide, and vincristine that St. Jude now claims is "known to be active against medulloblastoma." Again, they are contradicting themselves. According to their paper published in 1994, the lack of effectiveness of these drugs in medulloblastoma led to "progressive disease" that "required early termination of chemotherapy" (J Clin Oncol 1994 June; 12(6): 1212-1216).
This betrayal of children is not limited to St. Jude. Identical conduct continues around the clock at other children's hospitals throughout this country. In fact, Dr. Heideman told us that all the old chemo protocols are not optimum. That is the reason he decided to try injecting maphosphamide directly into children's brains and spines. Unlike many pediatric oncologists, he is trying to push the chemotherapy envelope as far as possible because he knows that young children with highly malignant brain tumors usually die while on chemo. But the reason we do not congratulate Heideman for this brave new strategy (and the reason we did not give him Alexander) was because it still represents the perpetuation of the same futile approach. Whether it's injected into the brain or spine or veins or arteries, chemo should be abandoned and replaced with more rational and effective therapies.
St. Jude Children's Research Hospital was an extraordinary vision by a wonderful man, but the vision for children with brain tumors has gotten lost. Oncologists like Dr. Heideman are bright and resourceful individuals. If they were to take off their "chemotherapy blinders" and avail themselves to promising non-toxic treatments, St. Jude would become the place it was envisioned to be - a truly revolutionary place for a child with cancer. Instead, the oncologists continue their gruesome, toxic and carcinogenic experiments on children's bodies and brains using drugs that have repeatedly proven their ineffectiveness. The number of deaths these oncologists are answerable for is a disgrace. But instead of trying a new path they are busy lying to the public, to parents and to children. Their so-called innovations are actually old, tired, toxic and ineffective experimentation on innocent children who want their lives saved not their bodies filled with poisons to hasten their deaths.
© Raphaele and Michael Horwin, 1999 - 2002