After my diagnosis of Brain Cancer in 2002, I became very concerned about the environmental factors that might be contributing to the increasing prevalence of childhood cancer. Hearing the words " You have cancer" is just about the worst thing you can hear as a young child, unfortunately it is heard much to often. There are many lasting side effects of cancer treatment that are virtually unheard of by anyone who has not been touched by cancer personally in some way. I am passionate about raising awareness of childhood cancer because I have, and still am experiencing what can happen when people do not have the proper knowledge of this vicious disease. I can take a perfect example of this from my own life. When I was told that I had cancer the first word that came to my mind was "death". I think the only time I had ever heard the word was on the news when some well-known celebrity died of cancer. I was completely! Unaware that cancer can strike anyone at any age, at anytime. It was not until I started going tough my cancer treatments and getting check-ups at St. Lukes Mountain States Tumor Institute in Boise, Idaho that I became aware of all the young children with cancer that I realized something was wrong. It was like the childhood cancer ward was a hidden room with no apparent knowledge from the outside world. Well it is time to pull the cloak off of the childhood cancer ward and reveal to everyone what has been happening to our children. Children are the future; cancer can destroy that.
--Trevor Smith - Nov, 2007

    Keep up the good work Trevor I've known you since you were 3 years old and I'm so proud of what you are doing. You have been through so much and for you to help others is wonderful. Good job Trevor!!
--Deanne - Nov, 2007

    Thank you so much for raising awareness of childhood cancer. We moved from Idaho about a year ago, but before we left I had started looking into a Conquer Childhood Cancer specialty license plate. I didn't get very far though. I had no idea how politically charged specialty plates had become! Tawny Flanders is a friend of mine, and Bri is a friend of my daughter. Through her website, I have seen the work that you are doing (the video, the float, proclamations, etc.). I am so happy that you are doing what I had not yet accomplished. I wish we still lived there to help you! I wanted to write to you about an unusual connection between Trevor and my son Nicholas who was born with cancer in April 2003. Throughout his treatment, I personally double-checked each dose of medicine that he received. I looked for his name, the drug name, the dosage, etc. no matter what time of day it was. One night, a nurse came in and started to give Nicholas chemo ALMOST before I could go through my compulsive checking routine. I stopped her and asked to see the bag. The name "Trevor" was on the bag. I stopped her just in time thankfully. Dr. Johnston told me later that that chemo was meant for an older boy and that the dose would have killed Nicholas. It wasn't until yesterday while I was thinking about Bri and the float that I put your Trevor and this Trevor together as the same person. Of course, it may not be the same person, but I think that it is. I am so happy to hear that Trevor is doing well. You are both an inspiration to me. Nicholas is also doing well. This month he has been off treatment for four years! I wish you continued health and happiness.
--Lara Derderian - Dec, 2007

    Trevor, Thank you for your hard work. I had no idea the affects of chemo and radiation until Trevor's Trek. Nor did I know how many children are affected each year by the killer called cancer. The support that you are providing to other children inflicted with cancer is so...........important. I want to see you keep going with the awareness.
--Karen - Dec, 2007

    Congratulations! Hi Trevor, I just had to tell you how impressed I am to see the wonderful work you are doing! You have much to be proud of, and it\'s very obvious to me that you ARE making a difference. I often think about you and wish you love and all the best always. !!
--Linda - Dec, 2007

    STEPHANIE'S STORY: My daughter Stephanie Suzanne Sands was diagnosed with Acute Lymphocyte Leukemia- T cell in mid-July 1999. I would later learn that Stephanie's was the 2nd case diagnosed as attributable to the Fallon, Nevada childhood leukemia cluster. In early June 2001 I again found myself traveling to the University of Pennsylvania Medical Center at Philadelphia to spend the day with Steph; she had undergone an UCB stem cell transplant there on 23 MAY 2001. Although the transplant had gone very well with engraftment beginning soon after the procedure, Steph remained hospitalized. During my drive to Philadelphia I struggled to find the words that I had to speak to Stephanie that morning that young Adam Jernee of Fallon who also battled ALL T-cell, had died the previous day in a hospital in Southern California. Stephanie and I spent perhaps our first hour together that morning in idle chitchat and with Steph good naturedly complaining about hospital food and that sort of thing. She complained bitterly of how badly she missed her son. She could tell that something was bothering me and I could not delay the inevitable any longer. There are no good words by which to deliver bad news and as gently as I could I told Steph of Adam's passing. Stephanie turned away in silence and remained sullen and detached for what seemed like an eternity. After a while Steph turned back to me and asked me how old Adam was; I told her that Adam was 9 years old. Steph's eyes filled with tears and slowly those tears were replaced with anger. STEPHANIE'S PLEA Daddy, they're just little kids. They didn't do anything wrong." Stephanie Suzanne Sands died in my arms on 1 SEP 2001 at the age of 21. She left behind an adoring 3-year-old son, Ewan Mikel Sands, and a heartbroken family. THE FALLON, NEVADA CHILDHOOD LEUKEMIA CLUSTER By her own words Stephanie planted the seeds of my activism that June day; her death lit a fire within me. The Fallon, Nevada childhood leukemia cluster is the most aggressive attack of cancer in medical history worldwide, in terms of time/spatial clustering. The official investigation into the Fallon leukemia cluster recognizes 17 cases of childhood leukemia. In Truth, there are no less than 25 children who have been cut down by Fallon leukemia over the course of several years; no less that 5 of our young warriors have died. The Fallon, Nevada childhood leukemia cluster was identified and exposed, not by the Nevada Cancer Registry or by the Nevada State Health Division, but by the parents of Fallon children undergoing treatment for leukemia at Oakland, CA Children's Hospital when they literally ran into each other there. Richard Jernee would later tell me that after encountering several other Fallon parents there in Oakland that What the hell? Became the word-of-the-day among Fallon parents who found themselves thrown together several hundred miles from home. The Fallon, Nevada childhood leukemia cluster soon hit the Public consciousness and the glare of national media attention forced CDC- the Centers for Disease Control to launch it's first cancer cluster study in more than 20 years. CDC and the Nevada State Health Division publicly predicted that their work would fail and several years later gloated in their failure as they closed their Fallon investigation. As with all of CDCs previous cancer cluster investigations, their Fallon study was doomed to be Inconclusive by Design from the very outset. I know of no other individuals, agencies or businesses which claim to achieve success through failure, yet this is CDC's stock in trade. CDC's Fallon childhood leukemia cluster study is it's 109th consecutive failure at cancer cluster study. If CDC were a horse, it would have been put down decades ago.

    OTHER COMMUNITIES, SAME STORY: In 2002 Dee Lewis and community activists in Calvine-Florin, CA became alarmed at the excesses of cancers, many of them rare cancers, among their neighbors. The CA activists were rebuffed and derided by governmental agencies as they presented their concerns. Also in 2002 Terry Norbrock of Tucson, AZ began mentoring and supporting many parents in Sierra Vista, AZ whose children had been diagnosed with Acute Myelocytic Leukemia. The Arizona Department of Health used every trick in the book to keep the Sierra Vista case count below statistically significant levels in order to avoid conducting a cancer cluster study there. AZ DOH went so far as to hand off one of the Sierra Vista cases to the Nevada State Health Division for inclusion into the Fallon study. In 2002 Paul Spracklen, father of a daughter fighting AML at NAVMEDCTR-San Diego bumped in to a woman there who seemed familiar to him. During a brief conversation Paul and this woman realized that they had been neighbors living in base housing while stationed at Guam. Within a short period of time Paul was in contact with a number of other former Guam neighbors whose children were fighting childhood leukemia at various locations around our country. Through personal tragedy Paul discovered and exposed the Guam childhood leukemia cluster, which struck the dependent children of US Navy and US Air Force personnel serving on Guam. In 2003 concerned parents of children diagnosed with ALL and living in Hoisington, KS contacted independent university researchers involved in Fallon, Nevada and Calvine-Florin, CA studies. More recently the story of the struggle of Trevor Smith formerly of McCall, ID has come to light, and Trevor's and his mother Charlie's work has begun. Most recently Michael Barry and concerned residents of Victor, NY have discovered stunning clusters of cancer and autoimmune disease among the residents of 50 homes there, which sit atop a known groundwater TCE plume. The list goes on and on and on. The stories remain the same, only the names and faces change.
--Floyd - Dec, 2007

    We live in northern Virginia now just outside of Washington DC. I agree that something needs to be done to raise awareness about childhood cancer and funding for childhood cancer research. Presently, I spend a lot of time worrying about the long term side effects of the very aggressive chemo that Nicholas started when he was just 16 days old. New issues seem to arise quite often, and information that I was given 4 years ago about the particular drugs he received has already been changed. He had an echo and EKG yesterday for which I am anxiously awaiting the results. He also has an appointment today because of possible liver issues that are developing. It's just not right! Re: Congress ~ Last June, my children and I participated in the Cure Search Reach the Day events in Washington DC. We were fortunate to meet some Idaho participants while we were there, Tammy from MSTI (can't remember her last name) and Hank Showalter and his mother. We met with our representatives in Congress and told them our story. We plan to continue those efforts. It is so important. Re: Rise of cancer ~ I have asked myself that very question so many times. Prior to Nicholas' cancer, I know that I would have believed that the people weren't eating healthy organic food or that they lived on well water too close to agriculture or they lived under power lines, etc. However, we were so careful about what we eat and what we cook with, where we lived, etc. I didn't even wear make up when I was pregnant. How is that for paranoid? I made my husband clean the toilets so I didn't have to be near any chemicals. Yet, my child got cancer. After Nicholas was born, I felt so powerless because all the things that I could control weren't enough to prevent him from getting cancer. I do believe that there is something in our environment that is out of my immediate control that probably did this. We lived in a newer home. There are all kind of chemicals in carpet and paint and sheet rock, etc. Look at Boise air during a winter inversion. It's HORRIBLE! I get so upset when neighbors use companies to spray pesticides all over their lawns every month. I can remember going out for a walk and then turning back because I could smell that someone somewhere was spraying their yard. Those are things that are out of my immediate control, but they are things that can change if people would just listen and make smarter choices.
--Lara - Dec, 2007

    Bradley Charles Springer was just 3 and 1/2 when he was diagnosed with a rare childhood cancer called Neuroblastoma in November of 2006. Bradley is now 4 and 1/2 years old. You have no idea how devastating the news was. Mom was 24; Dad 26 and they have another son who was 9 months old at the time Bradley was diagnosed. How could this be? Bradley had been treated for a year for what 2 family doctors called "normal childhood constipation" for about a year before a nurse practitioner decided to run urine and blood tests and knew something was really wrong. Bradley had a tumor the size of a tennis ball on top of one of his adrenal glands. The cancer had spread to his lymph nodes and bone marrow. Life will never be the same for this family. Living with cancer is truly just one day at a time. Bradley had 5 rounds of chemotherapy before they could do surgery to remove the tumor and one of his adrenal glands. Then on to Salt Lake City for a double stem cell transplant and radiation. The stem cell transplant was very painful. Bradley and the family came home for a short time and then went off to Memorial Sloan Kettering in New York to obtain the latest cancer treatment called Immunotherapy (3F8). Baseline tests that were performed indicated that he was still not cancer free. They did additional chemotherapy and Bradley had a difficult 8 and 1/2 hour surgery where the surgeon looked at every organ in his abdomen, removed lymph nodes that looked bad and scraped anything that looked like it didn't belong in there. His remaining adrenal gland was destroyed. He will now take medication for this for the rest of his life. I think that people don't really realize the impact on the extended family that childhood cancer has. I'm his "Nana" and I can't fix this. I've listened to my son have to make life and death decisions for Bradley. It hasn't been easy. Clark, his brother, has basically grown up in the hospital and Ronald McDonald house. Thankfully, my son was blessed with a great job and they have been wonderful and have let him telecommute. If it weren't for telecommuting, they would have had no income. We have been blessed with friends and family that truly care. Bradley is truly a miracle child. Currently, Brad is heading into his fourth round of Immunotherapy and is doing well. He is gaining weight and his hair has started to come back. His energy is continuing to increase every day and so is his stamina and appetite. We need to band together and find out what is happening to our children. Kids should never have to battle cancer. God doesn't make mistakes and we know that he has a plan for Bradley and Bradley has touched many hearts and gives us the strength and hope to find a cure for all childhood cancer!
--Cathy - Dec, 2007

    Ducks are known for their skills on the water, but they also have a talent of flying in the air. During each of my five pregnancies, I always made sure that in preparing the nursery that this bright, yellow, plastic floating bird was part of the bathtub accessories. I sang "Rubber Ducky, I'm awfully fond of you" during the early years of bathing my children. I'm not the best singer, but my kids always thought I was entertaining. It seems that Jarrett Micah, my 3rd child, was the one who enjoyed the tub the best. He would ask to stay in and play for long periods of time. With a little warm water added along the way, he would imagine himself to be an underwater diver searching for sharks, or journey on some other grand National Geographic quest. He enjoyed his marine adventures so much that one year at Halloween we built him a shark cage from a cardboard box and pulled him around in the wagon so he could trick or treat as a shark hunter. Then one day, the mighty hunter fell ill. Imaginative play stopped, and lying on the couch began. He was easily tired, but didn't sleep well at night. He lost his appetite and cried that his joints ached. Motrin would break his low grade fever only for it to return. It was the strangest viral infection I'd ever seen. I'm not sure if his diagnosis of leukemia was more difficult than his two months of pain and suffering. Those two months now seem like the longest in my whole life. In and out of the pediatrician's office, ER and lab visits, specialist appointments, a hospitalization and watching my 4 year old son being traumatized by it all took an emotional toll on me. A diagnosis of childhood cancer actually relieved me because I now knew what the problem was and could work toward nurturing Jarrett back to health. As Jarrett began chemotherapy I spent my time in the hospital and clinic with him reading about leukemia. My husband and I decided to get our water tested once we learned that benzene was a cause of leukemia, and that it was a bi-product of petroleum. We happened to live 500 feet from a massive petroleum tank farm which pumped in fuels from two different pipelines and stored them onsite for distribution. The movie, "A Civil Action" was coming out in theatres at the time, and it just seemed eerie that the children of the movie had the same type of rare childhood leukemia my son did. Their leukemia was linked to exposures of contaminated groundwater from community wells. I didn't want my son to die like all the children of A Civil Action. Yet twenty-five years after their plight, I found myself oddly in a similar situation. I should have realized that something was wrong when the water lab called asking for another sample. They speculated that our first sample had likely been contaminated from their lab chemicals, but the second sample revealed they were not. Carbon tetrachloride, a now phased out dangerous volatile chemical, was once used as an antifungal agent to keep rodents out of grain as well as used in refrigeration. 1, 2 dichloroethane is a solvent and degreaser. Both were reported in unsafe levels. Georgia Environmental Protection Division notified us that they would follow up on these results. They performed more intensive water tests and found what we had feared: benzene in unsafe levels. They also discovered trihalomethanes, trichloroethylene, chloroform, pesticides and a gas oxygenate in their samples. Our well was immediately shut down, and we decided in the best interest of our family to live in the basement of family until we could move elsewhere. I discovered that I could petition the federal Agency for Toxic Substances and Disease Registry who would investigate our exposure to these hazardous wastes. I wanted to know if these chemicals were responsible for my son's cancer. I also informed them of 4 other children in Athens who were diagnosed with acute leukemia before and after my son. A year and 30 pages later, a Health Consultation from ATSDR did not answer my question.

    Although they stated our risk for cancer was increased from exposure to the water, they left the report inconclusive. They gave no data on my son's in utero exposures to these chemicals, nor did they address the synergistic effects from our exposure to a multiple brew of toxicants. I was not satisfied so I continued to contact children's environmental health experts from around the world. I kept in contact with ATSDR, US EPA Region IV, GA EPD and the GA Division of Public Health to follow the investigation into the sources where the chemicals in our groundwater could have originated. In the meantime, I began a children's environmental health ministry to promote the awareness about the impact of the environment on children's health and well being. The emphasis of MICAH's Mission would be to reduce the environmental hazards in the lives of children and adolescents. The name of the ministry came easy. It was the middle name of my son who underwent 2 1/2 years of chemotherapy to stay alive. It was also a wonderful acronym: Ministry to Improve Child & Adolescent Health. In December of 2003, I received, after requesting and purchasing from EPA Region IV, an Expanded Site Assessment. The report summarizes that the petroleum constituents of benzene and 1, 2 dichloroethane could be attributed to Southeast Terminals, a company across the street from us, who had a history of negligence and environmental violations. Southeast Terminals is currently in remediation to meet compliance orders. Furthermore, according to this report, the carbon tetrachloride can be attributed to the old grain elevators in close proximity to our former resident. EPD is continuing their investigation of the grain elevators due to conflicting data reports from the landowner who hired a private environmental engineer for compliance issues. This contaminated area is listed on the GA Hazardous Site Inventory as the Athens Grain Elevators/Former Oakwood Mobile Home Park. I am seeking to hold Southeast Terminals responsible for their neglect, violations and failure to comply with federal and state environmental laws which resulted in our exposure to petroleum constituents from their facility. On behalf on my son who was diagnosed, treated and continues to be monitored for childhood leukemia, I would like to seek damages for his injury, pain and suffering. I would like to seek compensation for my family whose risk for cancer has increased because of our exposures to these chemicals. But I am also insistent that state and federal environmental regulatory agencies be held responsible for their part in failing to protect the environment and human health in our case. I call this the Duck Brief because of the water exposure pathway during his in-utero, infancy and early childhood that exposed my son to a burden of toxicants during critical windows of development. We believe the petroleum constituents contributed to his leukemia. Ducks, though they spend lots of time in the water, also breathe air and fly in the atmosphere. Childhood cancer research indicates that children who live in close proximity to petrol stations are at x4 the risk of developing acute leukemia. The longer they live near these facilities, the greater the risk due to benzene in the air. The most recent research also indicates that benzene in the atmosphere can be an in utero cause of childhood cancer. With the air pathways I breathed in my home from the volatiles in our water, along with the atmospheric benzene from the petroleum companies outside, there is no doubt that these multiple exposure pathways began my son's in utero exposures resulting in chromosomal changes. The fact that these volatiles would also transfer in breast milk is also contributory since I nursed my son into his second year. The poor regulation of these petroleum facilities is largely to blame for extensive environmental contamination that leads to my son's disease.

    Because the entire environmental regulatory agency has failed to do its job to protect the environment and human health for the past 30 years, I have a final reason for calling this the Duck Brief. The research from Woburn, Mass. where a Civil Action took place indicated that women, who drank contaminated water when pregnant, had children with a higher risk for leukemia. Childhood cancer remains the #1 cause of disease related deaths in children which are now known to be caused from atmospheric combustion pollutants especially benzene related chemicals. For their attempts to keep our environment from degradation and our children healthy, I have one bird word, "Quackery."
--Jill - Jan, 2008

    On August 12, 2006 Isaiah Rafael Rodriguez was diagnosed with AML known as Acute Myelogenous leukemia, a quickly progressing disease in which too many immature blood-forming cells are found in the blood and bone marrow. He is currently being treated by our area's best available care at St.Luke's Regional Medical Center, including a pediatric medical facility with experience in treating childhood leukemias. The intense treatment for Isaiah's subtype of leukemia requires the skills of board-certified Hematologists-Oncologists, a Pediatric Surgeon, Radiation Oncologists, Pediatric Oncology Nurses, Rehabilitation Specialists, and Pediatric Social Workers. This team of trained professionals ensure that Isaiah receives state-of-the-art treatment, supportive care, and emotional support for the months or years of his treatment. Isaiah's battle continues as he is currently receiving treatment out-of-state in Seattle, WA, where he has undergone an unrelated donor bone marrow transplant as well as receiving outpatient treatment with the Seattle Cancer Care Alliance. The Rodriguez family appreciates any and all of the support our family & friends can bring at such a critical time as this. Please visit us at: www.overcomeaml.org
--Ryan - Feb, 2008