The Journey called Life…
Yes, Life was Good! What more could I ask for? After years of infertility, Jon and Michelle arrived November 29, 1991. I remember how proud my husband was as he cradled them, blissfully unaware as my obstetrician skillfully converted my cesarean into an emergency hysterectomy. Having worked in Labor and Delivery, I knew the words well. "Prostin please; Can we have some extra hands in here? Do we have general anesthesia?" I prayed…"Please God, I waited so long to be a mother. I just want to live and be a mother." And I was heard…
Over the next four years of Jon and Michelle's childhood, I never knew how tired one could be. Yes, I had worked the rotating shifts, the back to backs, the 12 hour shifts of the nursing life, but nothing really prepares you for the fatigue of twin motherhood. How busy life had become, but the rewards were great…I was a mother!
April 7, 1996
It was Easter Sunday. It was no wonder Jon had vomited shortly after dinner as he and his sister had more than their share of candy at Grandma's. As I helped him back to the table, he was irritable and appeared pale. I became uneasy as I looked him over. Surely, it was the candy or the stomach bug, which had thrived all week at their preschool. I knew then it would be a long week. As the next several days passed, Jon began to spike fevers and grew more pale. "Was that petechiae on his earlobe?" No, it wasn't that as I quickly put the thought out of mind. It must have been related to his Easter Sunday big boy shirt with the stiff collar. Within the next two days, it was gone. We went to the pediatricians for a check and he was diagnosed with a virus. The intermittent vomiting, diarrhea and temperature were the bug du jour and it was a nasty long one. I felt reassured and went home. During the next several days, Jon's temp steadily climbed and I grew more uneasy with his paleness. The last night before our trip back to the doctors was a long one, as his Tylenol just didn't seem to bring down his temp. He vomited again only this time…it was there. Two small pencil sizes spots of purpura were dotting his shoulder and now his nose and lips had a blood tinged crust. "We are at the doctors as soon as they open," I thought as "hemolytic something" raced through my mind.
April 17, 1996
Jon's primary physician met us at the office and I could see the look of concern on his face as he greeted us. I relayed the night's events and the suspicious purpura as he laid Jon down to examine his abdomen and skin. He explained that Jon's liver and spleen were enlarged and his legs now revealed a faint petechiae…yes, I guess my first thought was correct. I didn't want to believe this was happening. Not my little boy! We were sent to the new Connecticut Children's Medical Center, which had opened just the week before. "No, I didn't want to see it like this"!
"Acute lymphoblastic leukemia"…the words echoed as Jon's oncologist relayed the news. His pancytopenic profile of the day before, HCT 18, platelets <5,000, WBC 1.6 with 80% blasts and 0 ANC was confirmed early pre-B ALL by bone marrow aspiration. The good news was that it wasn't aplastic anemia and not in his CNS. "Has Jon been exposed to ionizing radiation or benzene asked his oncologist? He was the only one who ever asked and I will always remember those words.
1996 to 1999
Over the next 3 years, Jon underwent Hickman placement with subsequent induction, intensification and maintenance chemo going into remission at 2 weeks from diagnosis, a favorable prognostic indicator. He has been off chemo since June of 1999 and May 6, 2003 will mark 7 years and the beginning of childhood cancer survivorship. As our family struggled to cope through the ups and downs of having a child with cancer, I began to search causation. Why did my healthy 4 year old child suddenly become so ill? What in our lifestyle or environment caused his little body to go haywire? I kept thinking about the oncologist's question…ionizing radiation or benzene, but no, we had not even had one x-ray.
My search for causation turned to the Parents of Kid's with Cancer message boards, pub med, Hematology Basic Principle and Practice and the Internet. I became immersed on environmental causes of cancer and came upon the Radiation and Public Health Project (RPHP). The words on their website seemed to jump out at me…"Low level effects of ionizing radiation" and "The Tooth Fairy Project".
The Tooth Fairy Project
Why Ionizing Radiation?
As I continued to search causation of childhood leukemia and cancer, I came across many suspected etiologies including, ionizing radiation, benzene, pesticides, plasticizers, chemicals and electromagnetic (non-ionizing) radiation. The number one etiology listed first in most instances continued to be ionizing radiation. Yes, "safe" limits were discussed, but as I continued to research, I learned that within the radiation expert community themselves, these "safe" limits were being challenged. Where did it come from I thought aside from naturally occurring sources?
I then read about Dr. Alice Stewart, clinical physician and Fellow of the Royal College of Physicians. In 1955, she and her colleagues noticed the rapid increase in childhood leukemia among children and the Oxford Childhood Cancer Survey was born. One of the key early findings was that children who died of leukemia or cancer had been x-rayed in utero twice as often as healthy children2, thus our practice of avoiding x-ray exposures during pregnancy. As the years went by, her work continued to point toward ionizing radiation and childhood cancers resulting in government and academic funding controversies and consequences. It appears even back then, profit was more important than people were.
My question after reading this was "does particulate
ionizing radiation deposited into our bones and teeth have similar effects
on the fetus and/or children as does an x-ray?"
After surfing the Agency forToxic Substance and Disease Registry (ATSDR) website and receiving their book on Strontium, I learned that stabile Strontium is found in nature in the form of minerals in amounts that vary widely. Radioactive Strontium 90 (Sr90) is not a naturally occurring substance and its presence in the environment is a result of human activities and nuclear fission. It is considered one of the most dangerous of the radioactive isotopes. . Both radioactive and stabile strontium may be transferred to the fetus across the placenta and infants may be exposed to radioactive strontium by drinking the breast milk of exposed mothers3. I also learned as I petitioned information from the state that Strontium 90 was also found in data reports of wastewater treatment plants. It was present in well water, municipal drinking water (tiny amounts) and fish. Other exposure factors to consider include dose, duration, how one was exposed, age, sex, diet, family, lifestyle as well as other chemical exposures can determine whether you will be harmed. According to the ATSDR profile, children are more vulnerable than adults to the effects of Sr-90 due to the higher rate of uptake and binding into growing bone and the possibility of high energy radiation damage to bone and bone marrow, leading to potential anemia or cancer (damage to DNA)4 As I read this, I recalled the unique vulnerabilities of children. Because children engage in more physical activity, play close to the ground, engage in hand to mouth behaviors, they are exposed to higher levels of toxicants. They eat more food, drink more water and breathe more air per unit of body weight than adults do5 Just what IS Strontium 90 doing to our children's health? What are the standards for children? Do we really understand them? Can we really be sure the "small" releases of radioactive particulates the industry claims are within the safe standard is NOT harming our children? Are we really sure of these "safe standards"? Are the releases being reported accurately and honestly? What is the synergy with other chemicals, radioisotopes both naturally occurring and man-made? It was then I became committed to helping the RPHP collect teeth. It might just be a small piece of the puzzle…
Who are the RPHP?
I contacted Joseph Mangano MPH, MBA, National Coordinator of the RPHP and relayed my interest in helping. I have gotten to know Mr. Mangano over the past two years as he endured my endless emails and phone calls helping to educate me on my new job. I was pleasantly surprised at his passion for his work, and had developed great respect for his persevering attitude, despite their uphill battle involved with such controversial and many times, political work. After all, there won't be academic grants from the energy industry! I began to learn just what the phrase "conflicts of interest in science" really means. At 40 years old, I was politically naïve, but I was learning.
Mr. Mangano's previous work was as a health administrator in hospitals and quality assurance/cost control.
"What motivates Joe Mangano to be such a dedicated and committed researcher?" I asked.
"I felt I could make more of a contribution to people's well being by getting into disease prevention instead of trying to figure ways to spend less money for treatment." After reading articles by Drs. Jay Gould and Ernest Sternglass, he made contact and his new career began. He has published 17 articles and wrote a book Low Level Radiation and Immune System Disorders: An Atomic Era Legacy, related to effects predominately affecting the generation Baby Boomers.
Janette Sherman MD is the author of Life's Delicate Balance: Causes and Prevention of Breast Cancer and Chemical Exposure and Disease, and has published well over 70 articles. She specializes in Internal Medicine and Toxicology. Dr. Sherman worked in radiation and biologic research at the University of California nuclear facility and at the US Naval Research Laboratory at Hunter's Point in San Francisco. Her undergraduate degree is in Biology and Chemistry from Western Michigan University and a Medical degree from Wayne State University. She has been an advisor to the National Cancer Institute on breast cancer and to the EPA on pesticides. She is currently an Adjunct Professor in the Department of Environmental Sciences at Western Michigan University.
"What motivates Dr. Sherman?" I asked.
"I became alarmed at the number of sick people I examined early on in my career, most were sick with preventable illnesses largely due to chemicals in their work places. My view was expanded as I saw children with cancer and birth defects from water contamination and pesticide use. My world was further enlarged while writing my book where I researched not only chemicals and hormone disrupters, but nuclear bombs and power plants."
After her book was published, Dr. Sherman's grand daughter was diagnosed with a malignant brain tumor at age 3 ½. After learning of this, I thought…We would all be touched in our lifetime…it no longer just happens to others.
Jay M. Gould Ph.D., Director and Founder is an epidemiologist and statistician serving on the US EPA Science Advisory Board during the Carter administration. He has written several books and articles on the epidemiological evidence demonstrating the health effects of low level radiation.
Ernest Sternglass Ph.D., Director and Chief Technical Officer of the RPHP Baby Teeth Study. As Professor Emeritus of Radiological Physics at the University of Pittsburgh Medical school, Dr. Sternglass has written numerous articles on the health effects of low level radiation and holds 13 patents for various radiation physics devices.
And then there is me…Agnes Reynolds, Mom to Michelle and Jon, Wife of Gilbert. Cancer Parent. Staff RNC in Women's Health at Hartford Hospital, CT and volunteer tooth collector for the RPHP.
As a nurse and mother of a child with cancer, I understand
the unique role we play in helping to establish links to causation. I
have submitted Jon's teeth for testing.
My fellow nurses…. Can you help us too? Baby teeth from children with cancer are needed for study…we need to take a stand and help support important research which will create the foundation for further study. We need to actively embrace prevention and educate our patients with regard to environmental exposures involved in cancer causation. We cannot be silent any longer…. or it may just be a "Silent Spring!"
Yes, Life IS GOOD! ….And I still pray….please God, I just want to be a mother. (I know I was heard!)
Agnes Reynolds RNC