Date: Thu, 15 Jun 2000 17:28:24 +1200

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From: USSW Date: Sunday, 8 February 1998 08:09

Subject: One Son's Story to the World

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The attached story will appear in the latest issue of "The Discoverer Review", the monthly publication of Toxic Discovery Network, Inc. Our brochure is printed and going out to prospective sponsors. We will make this "Memory Ride...Bike Across America"...Reality! We hope that you will help get this young man's story published for the WORLD to see....If you re willing to help...please contact us at the following:

Toxic Discovery Network, Inc.

1906 Grant Ln.

Columbia, Missouri 65203

Phone: (573) 445-0861

Fax: (573) 445-8539

E-Mail - Toxic@prodigy.net

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June 11, 1997... "Dad, why is everyone crying ?" my five year old son, Kaegan, asked me . "We're sad." I told him. "About what ?" he replies. "We're sad about Granny. We're sad because we will never see her again." Granny is what we called her since she had become a grand mother. "Where did she go? He inquired. With tears flowing from my eyes I responded "She's gone to heaven, buddy." Kaegan began to cry too.

11:00a.m. June 8, 1997... My mom had been in the intensive care unit for four days, going on the fifth. Everyone was exhausted and my wife, Kelley and I went to my mom's apartment to get to bed early. The ringing phone toke me from a stuporous, deep sleep... I was dreaming. Dreaming of unknown worlds. Confusion was pounding loudly in my mind and nothing seemed to fit into the perceptions which I currently knew. When I realized the phone was not part of the dream, I opened my eyes. The phone continued to ring as I tried to orient myself. The first thing I saw was my mom's cat sleeping to the foot of our bed. "That's odd" my wife said to me as we simultaneously had the same thought. Really odd I thought, considering the cat had been missing for two weeks. The same amount of time my mom had been in the hospital... When I answered the phone it was my father. "I think you guys had better get up here." he said. "What's going on?" I asked, but knowing exactly what was going on. " Things don't look good". He said. I could tell in his voice. Suddenly every thought I had about my mom's death became all too real and twice that..

November, 1989: My mom began noticing joint pain in her shoulder and hips, her skin was extremely painful to the touch on the shin and calf, her hands had become painful and numb. She thought she had carpal tunnel syndrome or months before seeing a doctor. Once she saw the doctor, he diagnosed her with Scleroderma in 1990. The doctor sent my parents home with a bundle of information regarding the disease and it's possible treatments. A strange disease for a forty three year old woman to get, especially with no family history of anything that even slightly resembled it, they both thought. My mom was so distraught over the information that she came home that night and went straight to bed. My Dad stayed up that night and read all of the information that was given to them by the doctor. He came across something that even the physician who had given it to them had not seen. One of the articles stated a "possible" correlation between scleroderma and silicon breast implants. Sirens went off in my dad's head. My mom had gotten silicone breast implants in 1979. They went back to the doctor with the information about the correlation and everyone involved believed that the silicone implants were playing a huge role in the rapid onset of the disease. She was immediately ex planted but that was only the beginning of her battle against silicone poisoning. Seven years had passed since the beginning of her illness. She went from a completely healthy, beautiful woman to someone who was experiencing severe difficulties with normal, daily bodily functioning. Her skin had become so stiff and tight that it felt like leather. Her hands had gotten so rigid that she could only close her hands to about 50% of making a fist. She had to use both hands to drink from a cup. Her mouth and face had become immobile. She could only open her mouth about !/4 of what she could just seven years ago. Her esophagus had lost a majority of its elasticity which made swallowing difficult and the valve between her oesophagus and stomach had virtually become useless. She was beginning to loose control of her owels. Her lung capacity was about fifty percent of its original capacity. She suffered from chronic fatigue and chronic joint pain and had numerous bouts with life threatening pneumonia.

My mom had initially taken an oral drug called penicillimine, with great results, but within a couple of years it had caused severe kidney damage. She then started receiving an experimental treatment called photophoresis. She would go to the hospital for two days every twenty eight days. She would be hooked up to the machine in which her blood would circulate through and be blasted by ultraviolet rays. This treatment was very successful at slowing the progression of the disease, but wasn't stopping it. The insurance company would not pay for this treatment because it was experimental. She received the treatment for about five years. The hospital continued to give the photophoresis pending insurance payment. We all felt very positive regarding the treatment and the results it was providing.

March, 1997: The photophoresis was going well, but the hospital had threatened to terminate the sessions because of the financial burden. It had been four years and they had not seen a dime for a treatment which was six thousand dollars per visit. A general sense of panic had overwhelmed our family. Not long after this a lump was found in her left breast. Biopsy revealed that the mass was malignant. Because of her skin's condition, the biopsy was very difficult to perform. The incision site was healing very poorly. She was told that a mastectomy would have to be performed. She then chose to have a double mastectomy. Many years ago she had given up on the idea of having any normalcy in her appearance and she was tired of it all. The double mastectomy would insure that the cancer would not spread to the other breast. The operation did not go as expected. The surgeon had problems with her skin ripping after he made the initial incision because of it's lack of elasticity. He was barely able to stitch the skin back together. The week following the mastectomy my wife, Kelley and I had returned to Missouri for a ten day visit. When we got there she had been in bed since the surgery and in a great deal of pain. Kelley and took turn massaging her shoulders at night so she could have some pain relief and get some sleep. The drainage port was still in place so the incision site would not accumulate fluids. I could see clearly in her eyes that she was scared. While we were there, which was mid May, she started to gain some energy. Her endurance and strength improved enough that she was able to stay up all day without going to bed. She was scheduled to receive her first chemotherapy treatment the second day after we left. I was concerned about her getting the treatment since the incision from the mastectomy had not healed. To proceed with the chemotherapy before an incision was healed was common practice our family was told and there was no reason to worry. We had to leave Jefferson City because I had to get back to work. After kissing her and telling her that I loved her I went to our car. I got in the passenger seat and Kelley drove. As we pulled away the image I saw will forever be etched into my mind. My mom was standing in front of her garage waving with a smile on her face. The look on her face was one that was not afraid anymore. Something had changed for her while we were home. She looked like she believed she could beat the cancer.

We returned to Santa Fe on my birthday, May 26. I talked to my mom on the phone at 4:00 in the afternoon. She had gotten her first chemo treatment two days before and reported feeling good. At 11:00p.m. on the 26th, my brother Jim called me. He told me that our mom was in the hospital. Her left arm had become severely painful. So painful that she felt she had to go to the emergency room. She didn't even mention it to me, just six hours earlier. Jim wasn't sure what was going on except she was in agony. She as medicated with morphine immediately and that decreased the intensity and then admitted to inpatient hospitalization for observation. After many days the origins of the pain was still unknown. Continued medication from the morphine caused her to become confused. There were many ideas, but none accurate. It was finally concluded that the source was an infection. The drainage port had been dislodged one night as my mom slept. When she woke up, she tried to put the port back in herself. The next day the pain in Her arm started. I think she panicked when she saw the port was out and instinctually tried to put it back in without considering the potential risks. A friend of my mom's later told me that she had said on the way to the hospital " I might have done this to myself". She was in the hospital for almost a week and the infection was still present. Her white blood count had been very low from the chemotherapyand her body was unable to respond to the invasion.

June 3... Everything changed. She was very disoriented and at most times in and out of consciousness. It was discovered that the infection had spread into her lungs. This was only discovered after almost a full day of this turn for the worse. My sister in law, Kim, is a nurse. She was with my mom all day as a visitor and felt like it would be out of place for her to comment on what she thought was going on. Finally she asked the staff of anyone had checked her oxygen saturation level. No one had and when they did, her reading was in the twenties out of one hundred. Individuals with normal respiratory functioning are usually between ninety five to ninety seven percent. Most people would be fully unconscious at that point. Now there was an emergency on hand and drastic measures had to be taken. My mom was told that her only option besides death was to be put on a ventilator. She consented to the ventilator with the impression that it would only be for a day or two. It was using so much of her energy to try to breath that it was making her defense system weaker. Going on the ventilator would live her body a rest she was told. It would help her to fight the infection faster. When Jim called me and informed me of this news I decided that we had better return to Missouri. We got the news from Jim at noon on June 3, left at 11:00 p.m. June 3 and got to Columbia at 10:30a.m. June 4. Jim and y sister had been staying with my mom at the hospital from the beginning. When we got there we had been driving all night and exhausted. We met Jim and my dad at the front door. We immediately went to the ICU. Nothing could have prepared me for what I was about to see. I went through the double doors into a big room divided into sections by curtains. There was so much happening in there. Alarms on machines sounding, numerous doctors and nurses walking around and conversing, many other families with their loved ones. It seemed so cold and sterile. I walked to the left to where my mom was. She was in the supine position with needles inserted to what looked like every inch of her arm. There was a huge tube in her mouth, the ventilator. It's sound was very eerie. The suction of air into it and then the release. Its rhythm was a hypnotic reminder of what loomed just around the corner. I couldn't believe how swollen her body was. It did not look like her at all. It was very surreal. We went to her bedside and Kelley said "We're here Granny". She was able to barely turn her head and blink. It was enough of a sign that she knew we were there. This was day one. On day two on the antilitter her white blood count had increased some. It was encouraging news hoping that would mean she was beginning to fight the infection. Day three was the same; white blood count (WBC) had increased again and was approaching normal. The doctors were optimistic and began to attempt to wean her from the machine. They would turn it down from 100% oxygen and continue down until they reached 80%. She was able to handle 80% for a short time but ad to be returned to 100%. Her body temperature fluctuated so much. She was at 103 degrees most of the day and this indicated that the infection was still present. Day four her WBC went well over normal but nothing was controlling the infection. Some of the doctors had now become more concerned with the prognosis, especially the pulmonologist. Her body had continued to accumulate fluids. They went through so many IV bags of various fluids. I never knew the body could old that much. Her face had become so swollen that it was causing her eyes to open involuntarily. They finally had to put patches over her eyes because it looked like she was wide awake. Her heart rate had been hovering roundm 140 beats per minute. That is around 80% of the maximum of a normal, healthy 50 year old person. That would be the equivalent of me running or actually sprinting for 96 hrs. without stopping.

...After getting off the phone with my dad the morning of the eighth we rushed to the hospital. When we got there the doctor gathered my family or a meeting. He told us that my mom had a minor heart failure the night before and that her liver was beginning to fail. None of this was good news and even the most optimistic doctor had changed his mind. That day was the longest day of my life, yet it also seemed like it flew by. Around 8:30 that night Jim and I were standing at the foot of our moms bed. Neither of us were speaking. We both seemed to be lost in our own thoughts. Suddenly steady, constant beep jolted me out of my momentary daydream. It was her heart monitor. The machine showed a flat line across the screen. I turned to my brother and we both began to cry. We embraced one another for a moment when the monitor picked up a heart beat again. I took what felt like the biggest, deepest breath ever when I saw that jagged line return. We immediately went to the waiting room to get the other family members. Over the next fifteen minutes my whole family came into the room. All of the lights were off. The only light was coming from the equipment surrounding my mom. My dad was seated near her left shoulder and my sister, Nicki was at the same place on the right. Nicki had not left my mom's side the whole time she was in ICU. The doctors even told her to leave and get some rest, but she refused to leave her best friend. Myself, Kelley, Kaegan, Jim, Kim and their daughter Lauren, my brother Thomas, his girlfriend Maria and Nicki's boyfriend Steve were all, standing around the bed. For the next two hours we stood together, crying, holding hands and one another. We were watching the monitors like they were a movie that told my mother's fate. Flat line for 30 seconds then a weak return to 50 beats per minute. This cycle began slowly and gradually increased its frequency. By 11:00p.m. she had flat lined on the machine numerous times but the nurse told it did not mean she was clinically dead. Some of the flat lines lasted for up to two minutes but every time it rebounded. At about 11:10 her heart rate began to decline. It went from 50 to 40 to 30 beats per minute until it flat lined again. By this time we were in misery. It was like being tortured catching the monitors. This flat line lasted for over three minutes. It was three minutes of silence covered by painful crying. Beep...Beep...Beep... The monitor picked up a beat again and we began to cry harder. Sixty beats per minute; a normal heart rate. This held for about a minute and then gradually declined over a few minutes to a flat line again. The steady sound of the monitor rang in my ears and the nurse said she was gone. The ventilator was still pumping when she told us. I can still seeing her push one button and everything was shut off. Like a match burning out she had gone to the other side. The difference in what we saw between life and death was so subtle. The spirit in that body had crossed the thin veil of existence as we know it and the body was unchanged.

Over the next few days we had to plan two funerals. One where she lived in Jefferson City and another in Farmington, Missouri. We held the one in Jefferson City at the high school where she taught biology. We planned and organized the ceremony ourselves (my brothers, sister and I). It was very beautiful and comfortable. We concluded it by releasing five hundred white helium balloons into the air. Each balloon had a string attached with a small card. Everyone was instructed to write anything they wanted to say o our mother but never got the chance to do so. It was a moving experience and gave friends an opportunity for closure. That was not enough for me.

Following the funerals I had an urgent sense not to let my mom's death go unnoticed. I couldn't let her become another statistic. I wanted to do something that would educate people about the truths behind silicone breast implants. I was still in a state of shock and the creative aspect of my brain was overwhelmed by images from the hospital. My wife had an idea. Lets do a bike ride across America" Since we are both avid cyclists, I immediately saw the possibility. For a brief moment the pain was gone and was excited about the thought of doing it. It wasn't long before I returned to my state of disarray. For months the idea for the ride never left my mind but I had no clue where to begin. As we moved all of my moms belongings out of her apartment I found a newspaper article with a green post it note attached. The article was about a woman who had organized a not- for- profit group called Toxic Discovery Network, Inc. (TDN). The lost -it note had the name Kathy Keithley- Johnston R.N. written on it with a phone number. I kept the name and number. I

was blown away to read that my mom had only lived thirty miles away from Kathy and that she had never contacted her. I don't know why my mom never called, but that may be futile to speculate upon.

The idea of the bike ride began to consume my thoughts increasingly day by day. I was driving myself mad because I discussed the ride with many people and no one seemed to show any interest. I had not done anything to make it happen except talk and I was beginning to think that the idea was a waste of time. A few more months passed and I had a tremendous feeling of guilt that I might just let my mom's death go unnoticed by most. Finally, five months after she passed away, I called Kathy. By this time I had thought that we wanted to raise money to fund a research project to further study the relationship between silicone implants and the disease. I spoke to Kathy and told her of our ideas. She thought it was a great plan and that she would help in any way she could. She told me she would put me on the mailing list for her newsletter and send me other information regarding the topic. After a few days of intense anticipation the package finally arrived. I read every piece of information that she had sent and I was amazed. I learned more about silicone breast implants, the diseases related to them, the treatment and all of the legal issues surrounding them that I had the whole time my mom was alive. My parents chose not to tell we children much about the illness or maybe I chose to ignore it. I don't now which, but I don't remember a lot of discussion at home about my mom's illness. They only wanted to protect us and looking in hindsight, perhaps we may not have been prepared to deal with those issues. We did not talk about the lawsuit against Dow Corning either. Not at all. I had no inclination about the issue but learned from reading one issue of The Discoverer Review. After reading everything, I knew that what ever money I could raise that I wanted to donate it to TDN. Kathy and her partner Sandy McDougal have devoted their lives to educating people on toxic injury with an emphasis on breast implants. They are both survivors of silicone injury. I felt that they could do more with the money raised than I could ever imagine doing. They would be able to reach more people than they already are with more money to do so.

The silicone breast implant issue has been pretty hot over the past few years and there has been more than a lot of controversy. As of lately, the majority of the media attention has drifted toward the side that says there is no connection between silicone implants and disease. They say that silicone implants are completely safe. Well... We're sick of it!! Really sick of it !!! There is absolutely no doubt in any one of my family members minds that our mom and wife died of silicone poisoning. There is not a single person on this earth who could make us feel any differently. We're tired of Dow Corning covering up their messy tracks with their billions of dollars. We don't have billions to tell our story but we want to be heard anyway! We're tired of being lied to and we want the truths about toxic injury and silicone breast implants to be told!

My mom was working as a high school teacher and she loved what she was doing. She had finally found her role in society and gave one hundred and ten percent every day at school. Many children including her own children, present and future grandchildren will never have the opportunity to learn from someone who devoted themselves to their jobs. That is a rarity in our world any more and many peoples lives will be less rich without her in it. We're very angry about this! We're not angry that she is gone because it had to be, but we are angry that this all could have been prevented if Dow Corning had been honest from the beginning. She was told by her doctor that the implants were safe and the doctor had been told they were safe by the manufacturer. As far as we're concerned, Dow Corning should not only be in court for bankruptcy but for murder as well! Every individual who saw the memo that stated there were dangers surrounding the silicone implants, before they were ever introduced into the public, carries the blood of my mother and many other woman all over their greedy hands!!!

For seven years my family was torn apart. The pain in our hearts was so severe and we were not prepared to deal with the illness. Dow Corning did not give us the tools to handle the pain and suffering so we had to do the best we could and that is what we did. Funny how they had no problem producing silicon breast implants and making a lot of money off of them, but they have no money to pay for the damages now. Where did all of it go ? Some one or many people have fat bank accounts and all we have is a bill from the hospital for two hundred and fifty thousand dollars. Were is the justice in this scenario. If I were to get drunk, drive a car and kill someone in an accident, I would be sent to jail for murder. Not Dow corning though. They can kill numerous women with silicone implants and not pay at all, in any form.

Fear ruled my life while my mom was sick and now that she is gone I'm tired of being afraid. It was necessary in my life at that time but it no longer is now. I'm no longer going to stand back in the shadows and let my life be ruled by others. I want people who are sick from breast implants to know that it is OK to be afraid and more importantly that it is OK to talk about it with your family. There a hundreds of thousands of us and we are like a big family. We know what it is like to live with silicone implants in our lives and we need to use each other to help ourselves. Organizations like the Toxic Discovery Network are here to connect us and continue to educate those who are not part of our family.

My mother suffered for many years and thank God she no longer has to. While she was alive she displayed a strength that was unsurpassed. She never complained about her illness or her pain. She wouldn't talk about her disease unless we asked and that was only the minimum necessary. She anted us to continue with our lives and progress towards our futures. She did not want to be a burden. We want to reflect her strength by riding our bicycles across the country, and them some. Every revolution of the pedal will be in memory of her and her battle against silicone induced disease. We want to use this tool to educate women about their choices regarding implants and further educate those who already have them.

We plan to start the ride in Boston, Mass on May 15. We will then ride down the east coast to Richmond, VA. From Virginia we will ride across the U.S. through Kentucky, Illinois, Missouri, Kansas, Colorado, Wyoming, Montana, Idaho and Oregon to end in Portland. We will need a lot of assistance to make this happen but this will be an opportunity to make our collective voices heard. It is time the truth be heard and we want to scream it out. Can we really afford to lose another person in this battle? I don't think we can and we are going to do all that we can to prevent it.

Vaya con Dios. 1946-1997