NO RIGHTS FOR A CHILD DIAGNOSED WITH CANCER
Over forty years ago, those powerful words were written and endorsed by many nations throughout the world including the United States. It is a beautiful declaration but sadly it is only an illusion. The medical establishment took every single one of those rights away from our only child, Alexander. Without the right to live, there are no opportunities for affection, play, or love.
Alexander was two years old when he was diagnosed with medulloblastoma, the most common pediatric brain tumor. This killer of children is rising in frequency. Alexander was a strong, happy, intelligent little boy who loved life. He enjoyed trucks and could name various types of bulldozers, backhoes, garbage trucks, cranes, and tankers on sight. He had a special fascination with airplanes and helicopters and enjoyed his visits to the airplane museum where he could sit in the cockpit of a real helicopter and make believe he was flying. He enjoyed being pushed in a stroller while his mommy roller-bladed behind. He loved taking his daddy down to the boat docks to show him the little animals he had found attached to boat-lines that had been in the water too long. Of course, he loved the TeleTubbies and Barney and dreamed of the day when he would go to school wearing his little back pack, meet the real-life "Barney's backyard gang," and build things, make friends and play. Alexander was a wonderful, handsome, sweet, happy child who was loved by a large extended family. When he was diagnosed with brain cancer we turned to the FDA and the medical profession for help. What happened next, none of us could imagine.
After two brain surgeries to remove the tumor Alexander required therapy to ensure that the cancer would not return. We conducted around-the-clock research to find the cancer treatment that offered Alexander the beat chance to live. After scrutinizing therapies from throughout the world, we selected the Burzynski Clinic in Houston, Texas. Burzynski, a MD, PhD has a 20-year track record of curing or controlling the re-growth of malignant brain tumors in children and adults with an innovative cancer therapy. In addition, his therapy is nontoxic and offers a good quality of life. The worst side effect of his treatment is increased thirst and urination.
With this decision made we took Alexander to Houston. There, on September 21st, 1998 Burzynski met with us and then gave us the incredible news that he could not treat Alexander He explained that the FDA controlled his protocols and that this regulatory organization required that Alexander first be treated with chemotherapy and/or radiation and then have the tumor return in his brain. We explained that our son had suffered through a total of 16 hours of brain surgery to be tumor-free. Burzynski said his hands were tied. He explained that Dr. Robert J. DeLap who was then Director of the Division of Oncology Drug Products of the Center for Drug Evaluation and Research of the FDA had sent him a letter dictating what he could and could not do. Later, through conversations with other parents, we would learn that the FDA had actively restricted other children from gaining access to this potentially life saving therapy.
This position by our government signed the death warrant for Alexander and many other children. Now, instead of needing a diagnosis of brain cancer to enter the Burzynski Clinic, the FDA was requiring that the child first receive "standard therapies" (chemotherapy and radiation) and have "measurable disease." This meant that a child with brain cancer must first submit to chemo and/or radiation and have the tumor return in order to be admitted to the Clinic. Alexander did not meet either of these two criteria and that's why, at the age of two, he was rejected.
Back in Los Angeles, we scrambled for other options but we were unable to find any other viable non-toxic therapy that had any record of success with pediatric brain tumors. We spoke with the oncologists at Children's Hospital. They explained that radiation was out of the question. At two-years old, Alexander was much too young. Radiation would destroy his developing brain, leave him with severe neurological disabilities and reduce his IQ to around 60 which would mean retardation. But they held out a life raft - chemo.
Chemotherapy, they told us, was both effective and relatively safe. Much safer than either surgery or radiation. They told us that young children do extremely well on chemo. They told us that without a doubt, chemo would prolong Alexander's life. It got even better. The doctor who would later become Alexander's oncologist (Doctor X) told us that having Alexander survive wasn't the problem.
The problem was to raise him as an ordinary child. He made us promise that we would treat Alexander normally and- not show him any inordinate attention because of his disease. The oncologist gave us what we wanted most - hope. Yet, even with these encouraging promises we still hesitated. The idea of filling our son's body with poisons in order to make him healthy didn't make sense. We continued to pursue Burzynski's therapy We found that there were several doctors who planned to use this non-toxic approach outside the USA, beyond the reach of the FDA, but they were not up and running yet. The clock was ticking for Alexander. Dr. X of Children's Hospital began pressuring us to start the chemo.
We began receiving faxes and phone calls from him that communicated his impatience with us. After more assurances from the oncologists that their drugs would, at a minimum, "buy us time" we brought Alexander in for his first round of chemotherapy on October 7th, 1998. Alexander sat on his mommy's lap watching his favorite Barney video. The nurse came in the room covered with a protective "spacesuit" that covered her body with blue plastic from head to toe. She hooked up the bottles labeled "biohazard" to the IV pole and connected it to Alexander's port-a-cath that accessed a vein near his heart.
Then she started the drip. We cried quietly as this bottle of poison emptied into our son's body. Since before Alexander was even born, we had done everything we could to protect him. His mommy, Raphaele, ate healthy food throughout her pregnancy and bore Alexander without drugs or painkillers of any kind. She breast-fed him for four months and then made homemade baby food or bought organic baby food. His formula was made with bottled water. He rarely ate cookies, candy or ice cream.
From day one, we made sure everything that entered Alexander's little body was pure, healthy and wholesome. For the first six months of his life, we had even made his grandparents wash their hands before they touched him. And now he lay in a hospital bed attached to an IV pole where liter bottles of poisons were being purposefully poured into his veins. To reassure ourselves, Raphaele and I repeated the words that the oncologists had told us. "We're buying time. "And to Alexander we said, "This is medicine that is going to help you."
What we didn't know and what we couldn't possibly know was that those words were lies.
After the first round of chemo, Alexander began to change. Even after two brain operations, Alexander was still a vibrant, ruddy, strong, energetic child. But as the chemotherapy repeatedly filled his small body, Alexander began to die inside. First the relentless stomach pains and the horrendous projectile vomiting began. Then his beautiful curly hair fell out. Next his dark skin tone turned pale as a ghost. He got sick with fevers and spent weeks in the hospital.
Then there were the blood transfusions to replace the blood cells the chemo had killed, the hearing tests to see if the chemo drug cisplatin had not devastated too much of his hearing, the nuclear medicine tests to check if Alexander's kidneys were not giving up under the strain of processing so much poison, the liver function tests to ensure that his liver was not being destroyed, etc. We felt as if we were actively engaged in the slow torture of our own child.
Then we found the following statement written by Alexander's oncologist in our son's medical chart. It was dated September 26, 1998: "Dr Z also called me because he was very concerned about Mr. and Mrs. Horwin ... He was very concerned that the family would refuse treatment and that a court order would have to be obtained to treat Alexander."
And on October 6, 1998 Dr. X continued: 'I think that if Mr and Mrs. Horwin do not bring Alexander in for chemotherapy tomorrow, additional steps will be necessary."
We went to see an attorney to find out if the oncologists could take Alexander from us if we decided to stop chemo. Incredibly, the answer was yes. The lawyer explained that the court could take custody until the law decided what to do. We weighed everything. If we said "no more chemo" to the oncologists we knew that would get a visit from a police officer and a social worker. Alexander would be taken from us screaming. His last days alive could be spent out of our reach in some kind of foster care environment away from his home, his family, his toys, everything he knew and loved while an over-burdened legal system decided what to do with him. If we agreed to continue chemotherapy the horrific side effects would persist but the oncologists assured us that the treatment would prolon Alexander's life, if not save it. . 9
If we left the country, we would have our son but no blood tests, MRrs, or follow-up by the surgeons who operated on him. Those were our three choices, one worse than the next.
What do we do? We did not have a choice of therapies. Our first choice for treatment at Burzynski's Clinic was denied. The oncologists warned us that if we didet use chemotherapy that the tumor would probably return in three months.These doctors assured us that the chemo they were administering to our son was the current "state-of-the-art." They told us repeatedly that this was Alexander's best choice for a long and healthy life.
We continued the chemotherapy Soon Alexander's balance was lost and his ability to see deteriorated. When we took him home from the hospital, in between chemo rounds, we had to give him daily injections into his legs to help raise his blood counts that the chemotherapy had decimated. Alexander hated it. The whole thing was horrendous.
We never stopped looking for alternatives. After three sessions of chemo, we had found a clinic in Switzerland that had a good track record with pediatric cancers using a non-poisonous approach. Raphaele told Alexander: "No more chemo, Ninouche. It is finished! No more chemo or hospitals!"Alexander was thrilled. 'Yeah mommy, no more chemo," he said. This was on December 7th, 1998.
But it was already too late. After a "clean" MRI on January 4th, Alexander had pain in his head and back and he began to vomit. His oncologist, Dr. X refused to do a UM because he had done one recently and it had not shown the return of the tumor."Mommy I have pain here and here," Alexander repeated constantly putting his hand on his lower back and on his head. His suffering was increasing. We brought Alexander into the hospital on January 11th and Dr. X ordered a CAT-scan without contrast. We were told that the scan looked "fine," although later, we would find out that a CAT scan - especially one taken without contrast, is not designed to reveal the presence of a returning brain tumor. As Alexander's pain continued to increase, incredibly Dr. X told us to give Alexander Tylenol and "Mountain Dew" the soft drink because it had caffeine for his headache.
Finally, on January 18th, we brought Alexander in to the hospital and demanded' a MRI. We knew something was terribly wrong. Dr. X refused to 'order the test. We had a confrontation. We would not leave until a MRI was ordered. They would have to drag us out. Finally, the doctor relented. Alexander was wheeled into the MRI suite. We told him that he would sleep for a while and then when he woke up mommy and daddy would be there and we would go home. An hour later we had the news. It was surrealistic - like the first time we were told our precious son has a brain tumor.
Dr. X shook his head and told us that Alexander had over 30 tumors throughout his brain and spine.
"What does that mean?" we asked completely stunned.
"I'm afraid that it means that he has about three days to live," he told us.
We were ushered out of the MRI suite. Alexander was waking up slowly recovering from the powerful drug Nebutal. He smiled because mommy and daddy were standing over him.
"Mommy, I have to throw-up,"he said apologetically and threw up on the floor.
"It is ok Alexander, it is ok Ninouche, mommy loves you so much." We were keeping back our tears to maintain our sanity in front of our 2-1/2 year-old son. One of Alexander's neurosurgeons stopped in to look at the MRI and then came out to talk with us.
"What is it?" we asked him.
"Leptomeningeal sarcoma. I am so sorry. There is nothing we can do."
"How is this possible?"
"It happens," he said.
"How often?" we asked.
"It happens sometimes. I'm sorry, I've got to get back to the OR," he said and left.
Dr. X added, "Oh, yes I have seen this a lot," and walked back inside the MRI suite. We stood silently, holding Alexander's hands.
"I'm going to ask Dr. X what we can do," I said to my wife. Without asking permission, I returned to the MRI suite. Dr. X was laughing with one of the nurses. When he saw me his demeanor changed and the nurse got off the table where she was sitting and walked away.
'Me only thing we can do is send you home with hospice care. I'll give you a prescription for morphine and decadron " Dr. X said as he awkwardly patted me on the shoulder. "I think it is better to keep your son here tonight and you can go home tomorrow," he added.
Alexander hung on for almost two more weeks. He wanted desperately to stay alive. He loved life. He loved his mommy and daddy and he wanted very much to stay with us and grow up and go fishing and do all the things we promised him that we would all do together. Alexander died on January 31, 1999. He was only 2-1/2 years old.
After Alexander was buried, Raphaele and I wanted to know *hat happened. No one ever told us that the cancer could come back and kill Alexander while he was on chemotherapy. In fact, Alexander was only one-quarter the way into a twelve-month chemo protocol. We used Medline, the electronic medical index available on the internet, to search for "leptomeningeal sarcoma," the cancer that had grown so rapidly and killed him. One of the abstracts that came back stunned us.
It was a study published in 1994 by a leading pediatric oncologist of St. Judes. It discussed the "leptomeningeal progression" of medulloblastoma in 13 children Alexander's age who were given chemotherapy. It explained how the cancers returned and spread in eleven of the 13 children within five months. This abstract described in detail exactly what happened to our son. In fact, the treatment went so poorly that according to the abstract: "Progressive disease required early termination of chemotherapy in 11 (out of 13) cases."- Gajjar A, Mulbern RK Heideman RL, Sanford RA, Douglass EC, Kovnar EH, Langston JA, JJ Jenkins, Kun LE. Medulloblastorna in very young children: Outcome of definite craniospinal irradiation following incomplete response to chemotherapy. J Clin Oncol 1994 June; 12(6): 1212-1216
In other words, it worked so poorly that the oncologists actually stopped the therapy. Unfortunately, the abstract did not name the chemo these children were given back in 1994. "These couldn't be the some drugs Alexander got. Alexander got state-of-the-art cherno," I said to Raphaele in disbelief.
We were suspicious so we drove to the medical library at UCLA medical center to retrieve the full text of the article. What we found sickened us. The chemo that they had given these children was identical to the cherno the oncologists had administered to Alexander. The four drugs were exactly the same. The cancer that returned, metastasized and took Alexander's life did so in less than five months from the time when he had his surgeries. Right on schedule. Just like the other children. Alexander never had a
chance. The chemotherapy they had given him had proven its uselessness years before.
After reading this article we wondered what else the oncologists had not told us. We began to read hundreds of abstracts and articles on pediatric brain cancer written by oncologists for oncologists. In the pages of their medical journals we were amazed to find that they admitted to each other that chemotherapy is ineffective, extremely dangerous, toxic and carcinogenic in the treatment of medulloblastorna and other aggressive pediatric brain cancers. If any of this information had been made available to us, we would have hidden Alexander so that the oncologists couldn't force these useless poisons into our son.
What you are about to read will shock you. It is a story of oncologists lying to parents about the efficacy of their therapy and using coercive tactics such as threats of court orders to take children and submit them to treatments that they know are torturous and ineffective. The quotations that follow come from abstracts and articles printed in their own peer-reviewed medical journals that trace the use of these drugs in children, starting almost a quarter of a century ago. It is organized in chronological order. All the abstracts are available on Medline (http:Hncbi.nlm.nih.gov/PubMed/). Most medical libraries can provide the full articles. To make it easier to follow the chemo drugs they gave Alexander, they are bolded in the quotes and listed below. Incredibly, all these drugs are still being administered today to children whether or not the parents consent.
Alexander was put on protocol CCG 9921 that consists of
Vincristine causes seizures: In 1976, the oncologists experiment on children with a drug called vincristine. Twenty-two years later, they would administer the same drug to Alexander. Here in 1976 they find that the drug causes seizures.
'Seventeen children with clinical evidence of recurrent brain tumor were treated with vincristine for 12 weeks ... The toxicity encountered was minimal except for seizures..."
- Rosenstock JG, Evans AE, Schut L: Response to vincristine of recurrent brain tumors in children. J Neurosurg 1976 Aug, 45(2): 135-40.
Vincristine does not eliminate cancer: A year later, they tested vincristine with two other chemotherapy drugs on more children. The tumors returned in an average of 45 weeks with the chemo.
"Seventeen patients with recurrent medulloblastoma were treated with a combination of three drugs: procarbazine, CCNU and vincristine. The median time to progression (the time when the tumor returned) for all patients was 45 weeks."
- Crafts DC, Levin VA, Edwards MS, Pischer TL, Wilson CB. Chemotherapy of recurrent medullQblastoma with combined probarbazine, CCNU, and vincristine. J Neurosurg 1978 Oct; 49(4): 589-92.
Response rate has nothing to do with survival:' In' 1979, an article appeared that explained the significance of a response rate, the benchmark used by all oncologists. A patient 'responds to therapy" when their tumor shrinks, but apparently this has nothing to do with survival. A tumor "responds," that is shrinks a little, then quickly grows and spreads. In this example, five children with medulloblastoma (the same tumor as Alexander) "responded," but as of 1979, three had already died.
"Five children with recurrent medulloblastoma were treated with Vincristine, BCNU, Methotrexate and Dexamethasone. All five patients responded to therapy. Two of the patients are alive..."
- Duffner PK, Cohen ME, Thomas PR, Sinks LF, Freeman Al. Combination chemotherapy in recurrent medulloblastoma. Cancer 1979 Jan; 43(l): 41-5. I
Oncologists experiment on children: As bizarre as it may seem to you or I, experimenting on children is permissible behavior for pediatric oncologists. They have been allowed free access to our children's bodies with no accountability. There are four reasons for this. First, children with cancer are not allowed access to alternative cancer therapies. A steady stream of new victims is assured because other treatment options are outlawed. Second, the rate of pediatric brain cancers continues to rise. Third, if parents do not willingly give their children to oncologists the child will be forcibly taken. Fourth, after the child dies there are no repercussions.
The oncologist's compensation, reputation, position, career prospects, and opportunities for advancement have no relationship to whether or not his young patients live or die. Alexander's last three months were spent being injected with dozens of drugs, vomiting, losing his hair, losing his eyesight, losing his ability to walk, losing hearing in one ear, having radioactive substances injected into his body, receiving blood transfusions, having GCSF injections shot into his legs after each chemo session etc, etc.
Then the cancer came back with a vengeance andAlexander was given a death sentence by his oncologist who washed his hands of us. "Sorry, I'll arrange for hospice care." And that was that. Don't call us we will call you.
In the name of science, oncologists have carried out hideous experiments on children with brain cancer. In the experiment below, a new chemo regimen is tried out in five children. The drugs are so toxic that three die from the toxicity, one dies from cancer, and the fifth is alive "but he is demented."
'The first five patients also received (chemotherapy) during radiotherapy. The toxicity in the five patients was very severe. There were three toxic deaths, one death from cancer, one patient survives disease free, but he is demented."
- Thomas PR, Duffner PK, Cohen ME, Sinks LF, Tebbi C, Freeman Al. Multimodality therapy for medulloblastoma. Cancer 1980 Feb 15; 45(4): 666-9.
Chemotherapy does not affect survival- Two years later, vineristine is part of another chemo experiment that is administered to more children with brain cancer. The only thing that changes is the body count. The chemotherapy is still useless.
'The data showed no improvement in the survival of such children when adjuvant therapy (chemotherapy) was given."
- van Eys J, Chen T, Moore T, Cheek W, Sexauer C, Starling K. Adjuvant chemotherapy for medulloblastoma and ependymoma using iv vincristine, intrathecal methotrexate, and intrathecal hydrocortisone: a Southwest Oncology Group Study. Cancer Treat Rep 1981 Jul-Aug-, 65(7-8): 681-4.
Vinmistine is toxic: That same year, another experiment with children demonstrated that vincristine was toxic to the nervous system, caused blindness, and could cause cardiorespiratory arrest.
"Three children with malignancies developed severe neurotoxicity, including transient cortical blindness, following chemotherapy regimens. The only drug in common was vincristine .. one child had a cardiorespirartory arrest..."
- Byrd RL, Rohrbaugh TM, Raney RB Jr, Norris DG. Transient cortical blindness secondary to vincristine therapy in childhood malignancies. Cancer 1981 Jan 1; 47(l): 37-40.
When I found that article I was particularly saddened. We both cried when we remembered how, after getting vincristine, Alexander's eyes would burn and bother him. We would pat his eyelids with a cool damp cloth to help ease the pain. It helped a little but his sight was terribly impaired and he would collide into walls, crashing his head with a "bang" you could hear throughout the apartment. Raphaele and I asked his oncologist what was going on and he assured us that the drugs had nothing to do with Alexander's deteriorating eyesight.
Chemotherapy does not affect survival: That same year, another experiment demonstrates that vincristine and other chemo drugs do not prolong survival.
"Survival with the chemotherapy used in this study (procarbazine, vincristine, and prednisone) was not superior to the survival of children who received craniospinal irradiation only."
Seiler RW, Bernasconi S, Berchtold W, Feldges A, Imbach P, Luthi A, Pluss HJ, Vassella F, Wyss M, Wagner HR Adjuvant chemotherapy with procarbazine, vincristine and prednisone for medulloblastomas. A preliminary report. Belo Paediatr Acta 1981 Jul; 36(3): 249-54.
Chemotherapy does not stop the cancer from spreading: It's 1981 and oncologists admit that they are on the wrong track. They state that chemo doesn't stop brain cancer from spreading throughout the brain and spine.
"Cerebrospinal fluid dissemination of medulloblastoma occurs despite adequate systemic chemotherapy..."
- Edwards MS, Levin VA, Seager ML, Wilson CR Intrathecal chemotherapy for leptomeningeal dissemination of medulloblastoma. Childs Brain 1981; 8(6): 444-51.
Vincristine destroys eyesight: The fact that oncologists were already warned that vincristine was dangerous to a child's eyesight didn't seem to make an impression. It didn't for Alexander's oncologist in 1998. This article is written about another child who nearly goes blind from vincristine in 1982.
"Bilateral optic atrophy developed in a 15 year old patient receiving radiation therapy and weekly vincristine for medulloblastoma... Visual loss occurring in a patient receiving vincristine should alert the physician to the possibility that the process is drug related."
- Shurin SB, Rekate HL, Annable W. Optic atrophy induced by vincristine. Pediatrics 1982 Aug; 70(2): 288-91.
Vincristine can kill: In the next article, the oncologists discuss what happened when they administered vincristine by accident. They undertook "detailed clinical observations" for seventeen days, the amount of time it took for the child to die.
"A case is described of accidental intrathecal administration of vincristine, with detailed clinical observations over a 17 day period. The toxicity ... resulted in death. The onset was characterized by opisthotonos, followed by ascending paralysis and finally bulbar and cerebral involvement."
Manelis J, Freudlich E, Ezekiel E, Doron J. Accidental intrathecal vincristine administration. Report of a case. J Neural 1982; 228(3): 209-13.
Cisplatin destroys hearing and leads to neurologic deterioration: In 1983, the danger of another chemo drug, cisplatin, is discovered, but only after trying it out on children. This is another drug the oncologists would inject into Alexander fifteen years later.
"Six children received cisplatin for recurrent brain tumor. Five of the six children had evidence of significant hearing loss after only one cycle of treatment. Two (children) ... developed profound deterioration in neurologic status within 72 hours after infusion
- Granowetter L, Rosenstock JG, Packer RJ: Enhanced cis-platinum neurotoxity in pediatric patients with brain tumors. J Neurooncol 1983; 1(4):293-7.
Cyclophosphamide does not affect survival: That same year, another chemotherapy drug called cyclophosphamide. is tried out on children. It does not affect survival. This is the third of four drugs they would administer to Alexander many years later. This article admits that even if a drug is "active" and temporarily shrinks a tumor, it does not prolong life. This admission echoes the one from 1979 in which a response rate has nothing to do with survival. The oncologists are admitting that an "active" chemo drug that creates a "response" (temporarily shrinks the tumor) has no "important effect on survival." You may recall that in the past, cyclophosphamide was already shown not to affect survival. But for some reason the oncologists kept prescribing it and countless children have been given the drug anyway. You may recall this statement from 1983:
"...Although cyclophosphamide alone was an active agent in this context, these treatment regimens did not have an important effect on survival."
- Allen JC, Helson L, Jereb B. Preradiation chemotherapy for newly diagnosed childhood brain tumors. A modified Phase II trial. Cancer 1983 Dec 1; 52(11): 2001-6.
As we have seen, the oncologists have admitted that chemo is toxic, provides poor quality of life and does not prolong survival for children with brain tumors. Yet, they continue to use various means to force and coerce parents to allow them to inject these poisons into the veins of innocent children.
The chemo is not the problem, it's the children who are at fault: It's 1993 and the oncologists have a new strategy. The drugs are exactly the same. What is different is who is to blame when the therapy fails. Now, the problem isn't that the chemotherapy is worthless. The problem is the children. They just have a poor prognosis.
"Children younger than 5 years who have PNET have a poor prognosis."
- Goldwein JW, Radcliffe J, Packer RJ, Sutton IN, Lange B, Rorke LB, D'Angio GJ.
Results of a pilot study of low-dose craniospinal radiation therapy plus chemotherapy for children younger than 5 years with primitive neuroectodermal tumors.
Cancer 1993 Apr 15; 71(8): 2647-52.
Other oncologists agree: Among patients with malignant brain tumors, infants and very young children have the worstprognosis and the most severe treatment-related neurotoxic effects."
- Duffher PK , Horowitz ME, Krischer JP, Friedman HS, Burger PC, Cohen ME, Sanford RA, Mulhern RK, James HE, Freeman CR, at al. Postoperative chemotherapy
and delayed radiation in children less than three years of age with malignant brain tumors. N Engl J Med 1993 Jun 17; 328(24): 1725-31.
Chemo is the problem: But some oncologists are uncomfortable with this new "blame it on the victim" mentality and are still willing to admit that the problem isn't the children, it's the chemotherapy.
'...the absolute benefit of chemotherapy for the treatment of medulloblastoma in childhood is, as yet, not proven."
- Attard-Montalto S, Plowman N, Breatnach F, Saba V, Eden OB. Is there a danger in delaying radiotherapy in childhood medulloblastoma? Br J Radiol 1993 Sep; 66(789): 807-13.
Chemo and radiation can kill: But chemotherapy isn't only ineffective. It's also dangerous. This little girl was killed by the combination of radiation and chemo that the oncologists gave her. The treatment caused her brain to become "necrotic" or dead.
A three year old girl received (radiation and chemotherapy for a recurrence) ... After two months ofthemotherapy, central nervous system toxicity progressed rapidly from ataxia to paraplegia to quadriplegia to central respiratory failure. RadiQgraphic scans and autopsy material revealed brain stem necrosis."
- Watterson J, Simonton SC, Rorke LB, Packer RJ, Kim TH, Spiegel RH, Priest JR. Fatal
brain stem necrosis after standard posterior fossa raidation and aggressive chemotherapy for metastic medulloblastoma. Cancer 1993 Jun 15; 71(12):4111-7.
It is 1994 and after almost 20 years of admitting that chemo does not work in pediatric brain tumors the oncologists are still administering the same drugs. Predictably the children react in the same way - they relapse and die.
More chemo failure: Here they gave children a chemo cocktail containing three of the four drugs they would later give Alexander. Tumors returned in six months.
Children (with PNE7s and ependymomas) were treated with a CCG (chemotherapy)protocol ... The median time toprogression (return of the tumor) was 6 months."
- Geyer JR, Zeltzer PM, Boyett JM, Rorke LB, Stanley P, Albright AL, Wisoff JH, Milstein JM, Allen JC, Finlay JL, et aL Survival of infants with primitive neuroectodermal tumors
or malignant ependymomas of the CNS treated with eight drugs in 1 day: a report &om the Childrens Cancer Group. J Clin Oncol 1994 Aug; 12(8): 1607-15.
Tumors return in seven months: In this chemo experiment they gave children the exact same four drags they would give Alexander four years later. For most of the children, the tumors returned in seven months.
..Responses were short lived, with two patients relapsing while still receiving chemotherapy. Three offour ver young children relapsed within 7 months of completing chemotherapy"
- Gaze MN, Smith DB, Rampling RP, Simpson E, Barrett A. Combination chemotherapy for primitive neuroectodermal and other malignant brain tumours. Clin Oncol (R Coll Radiob 1994; 6(2): 110-5
The exact same drugs they wouldgive Alexander in 1998 are again proven ineffective: Then there is the study that started our research. In this experiment at St. Judes Children Research Hospital, cyclophosphamide, vincristine, etoposide and cisplatin was administered to thirteen children. These children were the exact same age and had the exact same tumor as Alexander. In this study these chemo drugs worked so poorly that the cancers returned in an average of five months. As a result, the experiment . required early termination." The majority of the children had "leptomeningeal progression"- the cancers spread throughout their brains and spines. But this would not stop oncologists from continuing to use these exact same deadly drugs on Alexander and other children for years to come. In fact, these drugs are being forcibly used on children even now as you read this.
"Thirteen youngpatients (under 36 months) with medulloblastoma were treated with preirradiation multiagent chemotherapy ... Two patients completed the scheduled chemotherapy with residual disease and received delayed radiation therapy. The remaining elevenpatients had either local or leptomeningeal progression during chemotherapy (median time to progression, 5months) ... Progressive disease required early termination of chemotherapy in (these) eleven cases..."
- GaJar A, Mulhern W Heideman RL, Sanford RA, Douglass EC, Kovnar EH, Langston JA, JJ Jenkins, Kun LE. Medulloblastoma in very young children: Outcome of definite craniospinal irradiation following incomplete response to chemotherapy. J Clin Oncol 1994 June; 12(6): 1212-1216
Note that in these last three experiments the children's cancers returned in an average of 6, 7 and 5 months after the original tumor was surgically removed. Raphaele and I wondered how this figure of 5-7 months compared to the time to recurrence in the era before chemotherapy and radiation. In other words, when surgery was used by itself, did the tumors return faster, slower or at the same rate? The answer to this question would indicate if chemo does anything to slow the return of the cancer.
To get the answer we read the books and articles written by Drs. Harvey Cushing and Percival Bailey. These were the first neurosurgeons in the United States who actually named medulloblastoma almost 80 years ago. During the first quarter of the 20th century these early neurosurgeons removed medulloblastomas and other brain tumors at the Surgical Clinic of the Peter Bent Brigham Hospital in Boston. It took longer to diagnose in those days because they didn't have MRI or CT machines, but according to their data, children lived an average of eleven months from when they were first diagnosed.
These were children whose only therapy was surgery - there was no chemotherapy or radiation used. (Some patients were treated post-surgically with radium or roentgen-rays but these children were not counted to arrive at the eleven month average.) Furthermore, most of these patients did not have their tumors completely removed because of the lack of sophisticated surgical technology. Later, when the tumor recurred, Cushing and Bailey would simply operate to remove it a second or even third time. Cushing and Bailey wrote:
In one case, the patient had an extraordinarily long survival period, twenty-one months, from the time of the first operation, which amounted merely to a decompression. At two subsequent operations, the tumor, which the decompression had permitted to attain an enormous size, was radically extirpated .. It will be seen also that the next three patients operated on (cases 11, 12 and 13) had survival periods of nine, ten and sixteen months, respectively..."
- Bailey P, Cushing K Medulloblastoma Cerebelli: A Common type of Midcerebellar Glioma. of Childhood. Archives of Neurology and Psychiatry. Volume 14,1925; 192-224
Today, children on chemotherapy, have their brain cancers return in an average of 5-7 months. With chemo, Alexander lived a little more than five months from when he was diagnosed and he had all his tumor removed. This meant that in the days when brain surgery was just invented and chemotherapy didn't yet exist, many children with medulloblastoma lived longer than they do today. But today, we have superior surgical technique and the extent of tumor removal is greater. Incredibly, the children operated on 70 and 80 years ago already beat Alexander in-terms of survival, but if these kids had had the benefit of a modern surgery they might have lived even longer. Who knows how long these children would have lived if they had been given a modern operation.
This meant that chemotherapy is shortening children's lives, not lengthening them!
Without chemo, Alexander wouldn't have been poisoned. He wouldn't have had to spend his last months on earth in a hospital. He could have visited Disneyland and Sea World and played on the beach that he loved so much. Without chemo, Alexander wouldn't have been isolated from his friends and family. He could have had the most joy you could pack into a child's life. And most of all, without chemo, Alexander probably would have lived longer and would have undoubtedly enjoyed a superior "quality of life.'
Response rate is entirely subjective: This next article raised the curtain on the "science" behind these chemo experiments. As we have learned, when a study says that a child, responded, this means that the tumor shrunk temporarily. This is considered a success for the oncologist. Even when the children die, the oncologists focus on the response rate. The tumor responded, returns with a vengeance and kills the child. Yes, but, there was a response! A point in favor of chemo. If oncologists focused on duration and quality of life there would be no role for chemotherapy whatsoever. But in next article we see that response rates themselves are doubtful. This quote is taken from an article published by Memorial Sloan-Kettering Cancer Institute. In it an "institutional review" documents a 33% response rate. However, when the exact same patients are seen by the "central review" the response rate drops to 18%. We now understand that a "response rate" lies in the eyes of the beholder. This suggests that an oncologist can find a response rate where none exists:
'One hundred and thirty children less than 21 years of age with newly-diagnosed high-grade astrocytoma were treated with 'eightdrugsin-one-day chemotherapy ... Of 79 patients with evaluable postoperative residual tumor on CTor MRIscans 26 (33%) were determined on institutional evaluation to have had an objective response. However, central review of scans documented responses on only 14 (18%) ... The differences in response rates reported by institutional and central review highlight the difficulties inherent in assessing response to brain tumor therapy."
- Finlay JL, Geyer JR, Turaki PA, Yates AJ, Boyett JM, Allen JC, Packer RJ. Preirradiation chemotherapy in children with high-grade astrocytoina: tumor response to two
cycles of the "8-drup-in-l-day" regimen. A Childrens Cancer Group study, CCG-946. JNeurooncol 1994; 21(3):255-66.
Here we are in 1995 and more children are given the same toxic and worthless drugs with the same results.
"Chemotherapy consisted of vincristine, procarbazine and methotrexate ... No benefit for the receipt of pre-radiation chemotherapy could be demonstrated..."
- Bailey CC, Gnekow A, Wellek S, Jones M, Round C, Brown J, Phillips A, Neidhards MFL Prospective randomized trial of chemotherapy given before radiotherapy in childhood
medulloblastoma. International Society of Paediatric, Oncology (SIOP) and the (German) Society of Paediatric Oncology (GPO): SIOP H. Med Pediatr Oncol 1995 Sep; 25(3): 166-78.
Same drugs, more deaths: In the article quoted below, the oncologists admit that all the children died and that chemotherapy .was neither effective in controlling the tumor at the primary (original) site" nor in preventing it from spreading.
Chemotherapy consisted of two 28-day cycles Of cyclophosphamide plus vincristine, followed by one 28-day cycle of cisplatin plus etoposide ... All children ultimately failed chemotherapy (2 months-11 months) ... All children died ... 7Wis chemotherapy regimen was neither effective in controlling the tumor in the primary site nor in treating or preventing leptomeningeal spread."
- Duffixer PK, Cohen ME, Sanford RA, Horowitz ME, Krischer JP, Burger PC, Friedman HS, Kim LK Lack of efficacy of
postoperative chemotherapy and delayed radiation in very young children with pmeoblastoma. Pediatric Oncology Group. Med Pediatr Oncol 1995 Jul;25(1):3844.
The children die because the therapy is ineffective: Oncologists deduce that the children!s deaths are due to the cancer's resistance to chemotherapy, specifically a chemo drug called cyclophosphamide.
Many clinical trials 'noted that many children with newly diagnosed or recurrent medulloblastoma frequently displayed initial or subsequent resistance to cyclophosphamkIe... Development ofdrug resistance was invariably the harbinger of...death of the patient."
- Friedman HS, Bigner SH, Bigner DD. Cyclophosphamide therapy of medulloblastoma: from the laboratory to the clinic and back again (and again and again). J Neurvoncol 1995; 24(l):103-8.
If you review the papers quoted above (1983 and 1992), you will note that oncologists had already admitted that cyclophosphamide does not work in meduRoblastoma. This pattern of using a chemo drug, admitting it is ineffective, and then continuing to use it on children is incomprehensible.
Chemo is toxic and ineffective: Predictably, the next year it is still the same drugs and the same horrific, results:
'TVventy eight children with a variety of malignant brain tumors have received the regimen, which contains carboplatin, vincyistine, cyclophosphamkfe, methotrewte, and cisplatin. The treatment is toxic ... all but three children eventually required radiation..."
- Lashford LS, Campbell RH, Gattamaneni HR, Robinson K Walker D, Bailey C. An
intensive multiagent chemotherapy regimen for brain turnours occurring in very young children. Arch Dis Child 1996 Mar; 74(3): 219-23.
Cisplatin still destroys hearing: Remember Cisplatin and hearing loss?
Visplatin induced hearing loss ... may progress insidiously and rapidly."
- Ilveskoski 1, Saarinen UM, Wiklund T, Perkkio M, Salmi Tr, Lannin M, Makipernaa A, Pihko H. Ototo3dcity in children with malignant brain tumors treated with the "8 in 1" chemotherapy protocol. Med Pediatr Oncol 1996 Jul; 27(l): 26-31. That was written in 1996, do you recall this from 1983?
"Six children received cisplatin for recurrent brain tumor. "Five of the six children had evidence of significant hearing loss after only one cycle of treatment."
Granowetter L, Rosenstock JG, Packer RJ: Enhanced cis-platinum neurotoidty in pediatric patients with brain tumors. J Neurooncol 1983; 1(4):293-7.
The inexplicable use of dangerous drugs that oncologists admit are ineffective continues. For these oncologists, it seems nothing has changed in 13 years except more children getting injured by drugs that are supposed to help them. Each child represents income to the oncologist and profits to the drug company that sells the chemotherapy. Of course, none of these victims are the oncologists' children.
The outcome with conventional therapy 'remains poor." Oncologists are not shy about admitting to each other that what they are doing does not work.
'The outcome for the majority of children with malignant brain tumors remains poor, despite surgery, irradiation and conventional chemotherapy."
- Finlay JL. The role of high-dose chemotherapy and stein cell rescue in the treatment of malignant brain tumors. Bone Marrow Transplant 1996 Dec; 18 Suppl 3:S1-6
Chemo remains 'unproven": Oncologists continue to question the value of chemo but they keep right on prescribing it.
"...the value of preradiation chemotherapy remains unproven."
- Packer RJ. Brain tumors in children. Curr Opin Pediatr 19M Dec; 8(6): 549-57.
Chemo does not work: The same toxic and ineffective drugs. The same results. More tortured and dead children. More grieving parents. "We treated 25 children with nondisseminated medulloblastoma... with carboplatin and vincristine ... Our experience with this adjuvant chemotherapy regimen with carboplatin and vincristine, as used by us, does not en ' courage its adoption in future clinical trials." - Bergman 1, Jakaeld RI, Heller G, Finlay J. Treatment of standard risk medulloblastoma with craniospinal irradiation, carboplatin, and vincristine. Med Pediatr Oncol 1997 Dec; 29(6): 563-567.
Vincristine causes neurotoxicity: The oncologists seem surprised that vincristine causes brain death:
"We describe a very unusual case offulminant (sudden and severe) neuropathy in a child who was previously exposed to vincristine. The clinical picture resembled brain death..."
- Bakshi N, Maselli RA, Gospe SM Jr, Ellis WG, McDonald C, Mandler RN. Fulmin
demyelinating neuropathy mimicking cerebral death Muscle Nerve 1997 Dec; 20(12): 1595-7.
That was written in 1997. Do you recall these comments written in 1981, sixteen years earlier?
"Three children with malignancies developed severe neurotoxicity, including transient cortical blindness, following chemotherapy regimens. The only drug in common was vincristine ... one child had a cardiorespirartory arrest..."
- Byrd RL, Rohrbaugh TM, Raney RB Jr, Norris DG. T~ransient cortical blindness secondary to vincristine therapy in childhood malignancies. Cancer 1981 Jan 1; 47(l): 37-40.
Chemo in children is a big experiment: Here in 1997 is an outrageous admission. The oncologists confess that although they have been using these chemo drugs to treat brain tumors for over 20 years they have no idea how much of the drug is delivered to the brain.
"Although both eyelophosphamide and ifos/amide are used in the treatment of central nervous system tumors, little is known about the concentration ofeither drug or their metabolites in the cerebrospinal fluid of children."
- Yule SM, Price L, Pearson AD, Boddy AV. Cyclophosphamide and ifosfamide metabolites in the cerebrospinal fluid of children. Clin Cancer Res 1997 Nov; 3(11): 1985-92.
Chemo still causes cancer: In this article published by the National Cancer Institute, the oncologists admit that a child has a 5.4-fold excess chance of getting cancer after being treated with conventional therapy:
Using conventional therapy, 'overall, there was a 5.4-fold excess of second neoplasms (cancers) ... Significantly elevated risks were seen for cancers of the salivary glands, cervix uteri, brain and CNS, thyroid gland, and acute lymphoblastic leukemia."
Goldstein AM, Yuen J, Tucker MA. Second cancers after medulloblagtorna: population-based results from the United States and Sweden. Cancer Causes Control 1997 Nov; 8(6):866-71.
With orthodox treatment, medulloblastoma is fatal: Here's a statement from oncologists at Harvard Medical School that with only rare exceptions, recurrent medulloblastoma. is "universally fatal."
'Recurrent medulloblastoma has long been considered universally fatal. In spite of attempts to improve its treatment, only rarely have long term survivors been documented in the world's medical literature."
- Balter-Seri J, Mor C, Shuper A, Zaizov R, Cohen IJ. Cure of recurrent medulloblastoma: the contribution of surgical resection at relapse. Cancer 1997'Mar 15; 79(6): 124-7.
Chemo is still ineffective: In this next chemo experiment from St. Jude Childrens Hospital, seventeen of 23 children with medulloblastoma had their cancers spread while getting chemo. This particular oncologist had used the same drugs three years before with such poor results that he pulled the plug on that experiment. But here he is using the same drugs again on a new group of children.
"Chemotherapy regimen depended onprotocol, but usually included cisplatin or carboplatin and' etoposide, + / - cyclophosphamide and vincristine ... (There were 23 patients under 3 years old) seventeen patients progressed (had the tumor return) during chemotherapy..."
- Richard Heideman M.D., et al; Patterns of failure in children with medulloblastoma: effects of preirradiation chemotherapy in The International Journal ofRadiation Oncology, Biology and Physics; August 1, 1997, volume 39(l), pages 15-24.
But even after these admissions that "virtually no cures are reported" with chemo in 1985, that chemo is "controversi0'in 1991, "unproven" in 1993, and provides "a poor rate of survival and high treatment-associated morbidity (i.e. side effects)" in 1997, nothing changes. Here we are in 1998. The children are still getting the same drugs. The children die of the disease or the chemo itself. The conclusion is that the treatment doesn't work. How many dead children did it take to reach that conclusion? What's worse is that even with that conclusion, the oncologists continue to use these drugs on children.
Chemo is toxic and ineffective. After receiving chemotherapy..."there were two toxic deaths. Median survival of the patients with resistant or recurrent disease was 4.7 months.... Conclusion: Alternative strategies need to be developed for this h~ghly lethal disease."
- Dunkel IJ, Garvin JH Jr; Goldman S, Ettinger LJ, Kaplan AM, Cairo M, Li H, Boyett JM, Finlay JL. High dose chemotherapy with autologous bone marrow rescue for children with diffuse pontine brain stem tumors. JNeurooncol 1998; 37(l): 67-73.
Chemo and radiation cause an unknown amount ofbrain damage: Here, in 1998, comes another one of those ghastly admissions that the oncologists don't even know how much brain damage they are causing with their therapy:
"In the treatment of children with brain tumors, balancing the efficacy of treatment against commonly observed side effects is difficult because of a lack of quantitative measures of brain damage..."
- Reddick WE, Mulhern RK, Elkin TD, Glass JO, Merchant TE, Langston JW. A hybrid neural network analysis of subtle brain volume differences in children surviving brain tumors. Magn Reson Imaging 1998 May; 16(4):413-21.
Chemo, provides "minimal suceess'~- 'For many years, chemotherapy has been utilized for the treatment of malignant brain tumors with minimal success."
- Prados MD, Russo Q Chemotherapy of brain tumors. Semin Surg Oncol 1998 Jan-Feb; 14(l): 88-95.
Orthodox therapy 'has not improved survival". 'Aggressive treatment ofmedulloblastoma, the most commonpediatric brain tumor, has not improved survival."
- Weil MD, Lamborn K, Edwards MS, Wara WM: Influence of a child's sex on medulloblastoma outcome. JAMA 1998 May 13; 279(18):1474-6.
Chemo causes cancer: Here we are in 1998 and more children are getting cancer from the chemotherapy the oncologists are giving them. In this article the oncologists list the various secondary cancers that their latest chemo experiment caused in their young victims.
"Diagnoses were choroid plexus carcinoma (2 children), ependymoma. (1 child), desmoplastic infantile ganglioglioma (2 children), and medulloblastoma (1 child) ... Three children younger than 2 years old developed ... myelodysplastic syndrome (2 children) ... and acute myelogenous leukemia (1 child) ... Potential causative factors for this high rate of secondary malignancies include prolonged use of alkylating agents and etoposide (chemotherapy)..."
- Duffher M Krischer JP, Horowitz ME, Cohen ME, Burger PC, Friedman HS, Kim LE. Second malignancies in young children with primary brain tumors following treatment
with prolonged postoperative chemotherapy and delayed irradiation: a Pediatric Oncology Group study. Ann Neurol 1998 Sep; 44(3): 313-6.
But this should not be any surprise. Simply take a look at the articles published years before (e.g. 1987, 19911997) that already described how chemotherapy causes new cancers in children.
All of this information was published and known to oncologists when we walked through the door withAlexander. This was the unimaginable history of a highly toxic and ineffective treatment that we never suspected e2dsted. None of this information was shared with us. Instead we were toldjust the opposite - that chemo would help Alexander because it has already helped thousands of children before him.
What would our reaction have been if the oncologists had acted honestly and said:
'Mr. and Mrs. Horwin, there are chemotherapy drugs that we have been testing in children with brain cancer for more than 20 years. The results, after all these years, suggest that chemo is unproven and potentially dangerous in your son's disease. In fact, we have proof that it can cause secondary cancers such as other brain tumors and various leukemias. Chances are that your son will not benefit appreciably by this therapy. Most children his age with medulloblastorna die fairly quickly even with administration of these drugs. In addition, because of the toxic side effects of the drugs, Alexander will not enjoy a quality life. Since there is no guaranty that the duration of his life will be significantly improved but there is evidence that the quality of his life will be significantly hindered we want you to make an informed decision. Feel free to try any non-toxic therapy that you think may work or that will give Alexander quality of life. If you wish to try chemo we are here for you. If you don't wish to try chemo, we are still here for you and will provide MRFs, blood tests, hospice care, etc. Whatever we can do to help Alexander we would be happy to do."
Those honest words would have been "music to our ears. "And yes, we would have passed on the chemo. But that's not how chemo was presented. Instead, we were told that time was running out. We were told, not asked, but told, that we had 30 days from Alexander's surgeries to start chemo. We were told that chemo would offer Alexander a good chance of survival. We were told that he would be getting a new chemo protocol with "state-of-the-art" drugs. And we were warned that if we did not bring Alexander in for chemotherapy a court order would be forthcoming, so that the oncologists could take him from us and administer these poisons without our approval. We were lied to and threatened so that oncologists could fill our son with deadly ineffective poisons that simply shortened his life and made his last days on earth a living hell.
The oncologists did what they were trained to without challenging the death that surrounds their treatments. The FDA took away Alexander's freedom to use a non-toxic and potentially life-saving therapy. The drug companies received their chemotherapy profits. Alexander lost his life. And we have to live with the knowledge that we never gave our son a fighting chance to survive his disease.
While Alexander was getting his chemo he would smile because he knew that mommy and daddy were with him." Alexander, your job is to rest and let the medicine work. Soon we are all going to go to the beach. Mommy and daddy and Alexander, the team!" Alexander would open his eyes and force a smile. "Yeah, the team," he would whisper.
The following basic moral and ethical concepts must be observed in medicine.
All experimental medical protocols should be voluntary.
The experiment should be performed to avoid unnecessary suffering.
No experiments should be conducted where there is a belief that death or disabling injury will occur except where the experimental physicians also serve as subjects.
Proper preparations should be made to protect the subjects even against remote possibility of injury, disability or death.
The human subject should be at liberty to bring the experiment to an end.
- Summarized from the Nuremberg Code
The bill was introduced on July 29, 1999 and was referred to the House Commerce Committee on August 27th, 1999. If passed, this law would allow individuals to choose any method of medical treatment, as long as there is no evidence that the therapy causes harm and that the patient is fully informed about the treatment and its possible side effects.
Correspondence: Raphaele and Mike Horwin
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