There was no joy comparable to watching my two little girls tumble and play in the lush green grass of our backyard. Their laughter and giggles were my music of motherhood. But one day that music paused and threatened to silence forever. After bringing my daughters in from outside, I noticed red welts forming on my daughter Jackie’s body.
My brain raced with questions – questions that at only two years old, Jackie couldn’t help answer. I frantically explored the backyard for clues and found small crystals settled in the grass – fresh fertilizer pellets recently spread by the lawn service our landlord required.
My husband and I took Jackie to emergency care and the doctor informed us that she had developed erythema multiforme, an allergic reaction characterized by large, irregular-shaped, red wheals. The cause was unknown, but it wouldn’t be unlike a two-year-old whose view of the world is quite close to the ground, to pincer-grasp the pretty candy-like crystals, and curiously place them in her mouth.
The doctor sent us home with assurance that the welts would subside, but that if we noticed generalized swelling, to bring her back.
“What would swelling indicate?” I asked.
The doctor replied, “That means the reaction has gone systemic.”
“And what does that mean?” I asked.
“Generalized swelling would mean her kidneys are shutting down, which is potentially fatal.” he said.
We took her home, but the welts didn’t go away, and within hours her hands and feet were beginning to swell. Her baby rosebud lips downturned beneath teary eyes told me she was now in pain as well. We quickly took her back to the emergency room doctor who said, “Get this child to the hospital now. I’m calling the pediatrician.”
My brain pushed all emotion to a back corner; the important thing now was to protect my daughter. Logic had to prevail.
The pediatrician who was waiting for us examined her and determined that she should be admitted immediately, placed on an I.V., and given steroids over a nine-day period. Wait a minute. Steroids for my two-year old? Placing her on an I.V. at this age would also mean sedatives so she wouldn’t pull the catheter. And due to the tubes and monitors, it could also mean an end to breastfeeding, which besides its naturally-inherent immunologic benefits, was a nurturing comfort to Jackie – and how she needed that now. We asked if there were any other medicines or modes of administration, and the doctor’s curt reply was, “Look, this has gone systemic. Your daughter’s kidneys could shut down and that will be it.” It was her “gentle” way of saying if we didn’t do exactly what she said, Jackie would die.
While one part of me wanted to turn my daughter unreservedly over to the care of the experts, there was something inside that wrestled with the cure. I was so committed to the health of my children that I never took so much as an aspirin during my pregnancy and didn’t use labor drugs for her birth. I couldn’t see how flooding her system with an arsenal of drugs when she was already fighting the effect of ingesting a chemical was the first best option. I wanted to know all my options rather than give carte blanche consent for a treatment I feared would have unnecessary risks. But we also had to make a fast decision. Time was not on our side.
We asked for a PDR – a Physician’s Desk Reference – which lists medications, their side effects, and modes of administration. They told us “We don’t have one.” Every hospital has one. We pressed; they miraculously found one. We looked up the steroids and found an alternative to I.V. administration. They could be administered orally. So we pointed this out to the doctor, who impatiently admitted that yes, it was possible. This meant no I.V.s, no sedatives, but the same potentially life-saving medication. This was a better option.
In the midst of all this, we called our pastor and asked him to meet us at the hospital to anoint Jackie for God’s intervention and healing. Like Ben Franklin said, “God heals, and the doctor takes the fees.” We knew the answer to that prayer might be “no” but we could at least ask.
Then the bargaining began. Armed with knowledge of the options, we told the doctor we were taking her home where she could be surrounded by the comfort of familiarity rather than the cold scariness of the hospital, we would administer the oral medication ourselves, and keep her under strict observation. The doctor reluctantly agreed, with the stipulation that we bring her back first thing in the morning. We agreed. The doctor warned us it would take at least one week before we would begin to see any improvement. So I geared myself up for a week of sleeplessness, gave her one dose of the medication at the hospital, and we took her home.
I tucked her in my arms that night, nursed her, listened to her breathe, and kept watch. The next morning, when the light began to fill the room, I surveyed her tiny body again. The welts were gone. The swelling was gone. And we knew what had happened. The answer was “yes.” We had promised to bring her in first thing, so we drove her immediately to the doctor.
The doctor shuffled papers, looked at Jackie, looked at us, looked back at her papers and, with a rather confused expression, asked, “Is this the same little girl I saw yesterday?”
“Yes,” we confirmed.
She sat back in her chair, shook her head, and said, “Well, this is one for the record books.” Jackie was never given another dose of steroids, and she was released from care in good health.
Medical science saves lives. But sometimes it takes a spirit of determination – not resignation – of optimism, and reasoned, alternative thinking coupled with science to pursue the possibilities. Sometimes when traditional medicine says “no,” something greater says “yes.”
That “yes” may come in the form of miraculous intervention, but my parenting experiences have taught me that, like for James “Rhio” O’Connor, it often comes through self-assertion, and finding the dance between working with the system and bucking it just enough.
Mr. O’Connor’s experience resonated with me as I reflected on Jackie’s story. Facing similar challenges, James O’Connor was handed his own death sentence with pleural mesothelioma, a type of lung cancer in the cells forming the pleural lining of the lungs, caused by exposure to asbestos. Given one year to live, he refused to accept the sentence. To fight his battle, he opened not just one reference book, but hundreds of medical articles that provided evidence for alternative health-restoring, life-giving care through nutrition, supplementation and mind-body medicine. He worked relentlessly within science’s own research to find alternatives outside of science’s accepted paradigm. Instead of chemotherapy or radiation which would decrease his quality of life, or surgery which could abruptly end it, through his own initiative and research he found safe alternatives that granted him an additional seven and a half years of life.
Life experiences are profound teachers, and like Mr. O’Connor, I believe those experiences are meant to be shared with others in order to provide both help and hope. Jackie is now 21 years old, a healthy, beautiful young woman of extraordinary faith and spirit. During Jackie’s childhood, my mothering experiences led me to a passion and part-time job of teaching classes in natural childbirth. Through these classes I have shared her story with hundreds of expectant parents. To each of these young parents I stress the importance of self-education, of asking questions, and of exploring more than one possible answer through a simple formula for informed consent using the acronym “BRAND,” which involves assessing benefits, risks, alternatives, necessity and decision-making.
The nature of informed consent is rooted in being informed. A diagnosis like cancer provides a compelling reason to research medical literature through consumer-accessible avenues such as local university medical libraries or online medical databases, to consult with a diverse range of professionals, and to glean information in order to extend life. I am completing an undergraduate degree in Fitness and Wellness, and pursuing my masters, with the hope that I will be better able to inform and positively impact families as they create life. I have seen the confidence that individuals gain by realizing their health decisions are ultimately in their own hands, which empowers them to search out the options and make choices that provide the highest quality of life, throughout life, from day one.
As I pursue excellence in healthcare for myself and my family, and show others a path toward making their own best healthcare choices, I see two driving forces – the same forces that drove James “Rhio” O’Connor: the inquisitive, factual nature of science which rightly causes us to ask “why?” and the determined optimism of the human spirit which causes us to ask “why not?”
