4-Year-Old Fights for More Than His Life "The FDA is Killing Our Children," says mother. <A HREF="http://www.cbn.org/Newsstand/stories/000504.asp">FDA, Friend or Foe?: 4-Year-Old Fights for More Than His Life</A> http://www.cbn.org/Newsstand/stories/000504.asp By Joie Munda and Ken Hulme May 4, 2000 -- EXCLUSIVE -- A young boy fights for his life from an aggressive form of brain cancer. Has the FDA become his worst enemy? People continue to protest over Elian Gonzales. Why is it that no one is fighting over Thomas Navarro? Thomas is the 4-year-old son of Arizona parents Jim and Donna Navarro. He has medulloblastoma, an aggressive form of brain cancer. Recently doctors operated on the young boy to remove a golf ball size tumor. Without additional treatment, Thomas will die. What would you do if you were Thomas� parents? Worse still, what you do if your child were suddenly struck with this fatal form of brain cancer? As his young life hangs in the balance, vital questions have emerged for Thomas� parents, and by implication for the nation: 1. Which cancer treatments are best: The prescribed Food and Drug Administration (FDA) treatment of radiation and chemotherapy, with their dramatic and debilitating side effects? Or an experimental treatments (approved in FDA trials) with an high success rates and no known side effects? 2. Who has the right to decide which treatment is best for this 4 year old�or any child with medical options: the parents and their doctor, or the government? 3. Is the FDA always right in its policies and practices? The "Recommended Treatment" When Thomas was diagnosed with brain cancer in September of 1999, not surprisingly, his parents were devastated. But within days, surgeons had successfully removed the cancerous growth. As a follow-up, they recommended an aggressive cocktail of radiation and chemotherapy, a course typical for this type of cancer. Medulloblastoma takes just 45 weeks to grow a second tumor. If the first one has been removed, the second one is fatal unless the patient undergoes this type of "salvage therapy," as one study calls radiation treatment in children Thomas� age. Initially, Jim was willing to trust doctors with the next step in his child�s care. But, he soon became skeptical when no one would talk to him about what Thomas� condition would be like after chemotherapy and radiation. And doctors were not willing to show the Navarros any survival reports of medulloblastoma. That�s when the Navarros learned some shocking news! "Every patient, which doctors have treated with radiation and chemo at his son�s age, was 'either crippled or dead,' " says Donna Navarro. When Jim wanted to know the ingredients of the chemotherapy, the doctor said, "You don�t need to know." That's when, "Our first red flag went up," says Jim. Later, Jim was assured by the radiologist that the side effects would be manageable. "He had listed skin redness, fatigue, nausea, vomiting, and loose stools and had me sign it," says Jim. The doctor leaves the room. About 10 minutes later he comes back and says, "Oh, Dad, by the way, I forgot. He�ll also have fluid on the middle ear, hearing loss, memory loss, hyperthyroidism, low level hormones, spinal growth deficit, hyper-pituitarianism, secondary tumors, cerebral necrosis, and he went on down the list." Thomas� doctors were unavailable for comment. The Journal of Clinical Oncology confirms the Navarros' fears. In a December 1999 study by St. Jude Children�s Research Hospital, "all patients lost cognitive function during and after [radiation] therapy." In fact, the summary went on to state that "all patients treated in this fashion�with salvage radiation therapy�have significant neuropsychologic deficits [including a significant loss in IQ]. Our experience demonstrates that medulloblastoma in infancy is a curable disease, albeit at significant cost." Suddenly, Jim and Donna realized their son could become an invalid, requiring a lifetime of care. Searching for an Answer As they began to turn a deaf ear to the radiologists, Jim and Donna worked feverishly to find a solution. Using the Internet, they spent thousands of hours becoming experts on their son�s condition. They also made friends through online chat rooms with other families in similar straits. There they also learned of a clinic in Houston, Texas, that had been approved by the FDA to do clinical studies for certain types of cancer. Would this clinic provide the answer? Then, the unthinkable happened. Because the Navarros were unwilling to submit their son to traditional FDA approved treatments, doctors finally turned the family over to child protective services. The Navarros decided to flee the state. They�ve been living in a hotel in Houston for the past six months. There they located Dr. Stanislaw Burzynski, a medical doctor and cancer researcher. The Navarros found Burzynski to be candid about his successes � introducing them to a thriving young man in college, a cancer survivor who has been healthy for 12 years, and an 8-year-old who has been cancer-free for three years. Burzynski was equally candid about his failures. Overall, Dr. Burzynski�s non-toxic, antineoplaston therapy, has had stunningly positive results among medulloblastoma patients, including patients of Thomas� age. Dr. Burzynski told Jim to pitch to the FDA on a new protocol, or study. Jim contacted an FDA official who agreed to the plan, which would require submission of a book-length document prepared by Dr. Burzynski. Working well into the night for a week, Dr. Burzynski wrote the protocol only to have the FDA official change his mind. "I have been dealing with the FDA for 17 years," Burzynski says, "and I have gone from one disappointment to another." It was a painful setback for the Navarros. And the FDA has told the family that Burzynski�s treatments are off-limits to Thomas until they exhaust the "approved methods � radiation and chemotherapy." Poll: WHAT DO YOU THINK? Should Thomas begin chemotherapy or radiation? YES NO See Results A Parent�s Right to Choose? Their plight has caught the attention of some impressive supporters, including Arizona Senator, John McCain, and Ambassador Alan Keyes. A bill � The Thomas Navarro FDA Patient Rights Act (H.R. 3677) � has been introduced in Congress by Rep. Dan Burton, (R-IN), chairman of the Government Reform Committee, who also threatened FDA commissioner Dr. Jane Henney with hearings over the handling of the Navarro case. In a December letter to her (http://cancerbusters.com/congress.html), the congressman wrote: "His [Thomas�] parents, after extensive review of treatment options, have determined that this treatment is what is best for their child." It�s the idea of "parent�s rights" to choose what is the best medical treatment for their child that�s at the heart of the matter. "If this intelligent, educated couple can not take their son to the doctor of their choice," says Dr. Julian Whitaker, advocate of alternative medicines and frequent guest of the 700 Club, "how can we say we live in this wonderful, free country?" The FDA and "Big Money" Whitaker blames the problem not only on "benevolent caution" on the part of the FDA, but on jealousy of Dr. Burzynski, who may have found a cure for certain types of cancer. "It�s the only significant breakthrough in cancer research this century," says Dr. Whitaker. It�s a discovery that Burzynski made at the age of 24 in his homeland of Poland. As an M.D. with a doctorate in biochemistry, Dr. Burzynski noticed that cancer patients are deficient in specific peptides � clusters of amino acids. In fact, he found that these peptides assist cells in learning when to die. But cancer cells never get the message and become "immortal." Then, as new cancer cells reproduce, they join together forming tumors. Dr. Burzynski invented what he termed "antineoplastons," (literally, �no new formations�), a mixture of synthetic peptides and organic acids. Antineoplastons not only "persuade" the cancer cells to die, but also act on the genes controlling the cancer. The cancer suppressor gene is turned on, and the gene that causes cancer is suppressed. So why won�t the FDA permit Thomas Navarro to be treated by Burzynski? Both Burzynski and Whitaker say it has to do "big money" and how the FDA "interacts" with pharmaceutical companies. "The past commissioner of the FDA � now he is an official of one of the large pharmaceutical companies, with a salary of $2 million a year," says Burzynski. "They [the FDA] would like to protect the old order, they would like to protect the interests of large pharmaceutical companies, they would like to use chemotherapy and radiation therapy for many years to come, even though there may be treatments which can be much better and which can be free from adverse reactions of chemotherapy and radiation therapy." Dr. Burzynski says that the FDA has recently restricted his clinical trials, to only the most hopeless cancer cases � and only after the patients have first undergone chemotherapy and radiation. (FDA Commissioner Jane Henney made the same case to Jim Navarro during an April 10 C-Span broadcast). But under a previous, FDA-monitored, Burzynski clinical trial three years ago involving eight children who had medulloblastoma �and no prior treatment � seven have survived and are doing well! A Long Wait� So the Navarros wait�unwilling to treat their child with radiation and chemotherapy because of devastating side effects�unable to get the treatment they desire at Dr. Burzynski�s clinic. "If our son dies," says Jim, but Donna finishes his thought: "They will convict us of manslaughter." "If our son dies," says Donna, "he will not be buried in the United States. And I will not call this country my home." "Time is running out," says Dr. Whitaker. "Thomas is about to have another MRI. But his father says he is beginning to fall, and that his speech is slurring. There is no doubt that this tumor is coming back. And those people siting at the desk of the FDA are open and willing to letting him die. And they will blame it on the family, and say that the family is too emotional, and � Burzynski doesn�t do studies.� They will blame it on everyone except themselves. And they have the power. All they have to do is say, �Give him the therapy." What can you do? Jim and Donna hope that you will pray for their son, and that you will take time to write a letter or email to your congressman supporting The Thomas Navarro FDA Patient Rights Act (H.R. 3677). To quickly email your Congressman, click here: http://congress.nw.dc.us/cgi-bin/alertpr.pl?dir=citizens&alert=18, then type in your zip code and send an email. The family would also welcome donations. (http://www.fundrover.com/display_fund.asp?id=70). "We�re almost completely out of money," Jim says. Send an email of encouragement or a donation to the Navarros: [EMAIL PROTECTED], or visit their website (www.cancerbusters.com) For more information on Dr. Burzynski�s antineoplaston cancer therapy, visit his website: www.cancermed.com. Gavin . Also see; http://naturalhealthline.com/newsletter/15april00/navarro.htm http://www.worldnetdaily.com/bluesky_dougherty/20000112_xnjdo_4yearolds_.shtml <A HREF="http://www.ctrl.org/">www.ctrl.org</A> DECLARATION & DISCLAIMER ========== CTRL is a discussion & informational exchange list. Proselytizing propagandic screeds are unwelcomed. Substance�not soap-boxing�please! These are sordid matters and 'conspiracy theory'�with its many half-truths, misdirections and outright frauds�is used politically by different groups with major and minor effects spread throughout the spectrum of time and thought. That being said, CTRL gives no endorsement to the validity of posts, and always suggests to readers; be wary of what you read. CTRL gives no credence to Holocaust denial and nazi's need not apply. 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