Sarah Hershberger, an 11 year old Amish girl, is in the news after her family fled their home to avoid court ordered chemotherapy treatments. But the main stream media, as usual, is either ignoring the story or misreporting the facts. And those few outlets who are publishing stories have neglected to do even basic research. A casual look at all the reporting surrounding this story would have you believe the little girl was diagnosed with leukemia and her family refused to allow treatment. Not the case at all.
My son is halfway through an arduous 3 year process to treat his leukemia – the same type of leukemia Sarah was diagnosed with. Acute T-cell Lymphoblastic Leukemia is a virulent disease that usually affects children and young adults. It can kill in a matter of weeks. But research over the past few decades has turned the prognosis of almost certain death into an 85% survival rate. One of the factors involved is the long treatment regimen – 3 years for boys, 2 years for girls – and therapies that are as harsh as the disease itself.
When my son was diagnosed the oncologist told me, “This is a very aggressive disease. We need to be more aggressive.” He was placed in a clinical trial using the most recent treatment methods. His treatment protocol has since become the standard for T-cell ALL treatment. Believe me, it is brutal. My son went from being a vibrant, healthy college student to an emaciated shadow of his former self in just a few weeks. He still struggles daily with the effects caused by the treatment though he is now free of the disease.
Treatment of leukemia is by design destructive. It targets the production of blood cells in the bone marrow where the disease thrives. The first phase of treatment is known as Induction. It destroys the leukemia cells and induces remission. At the end of that phase the patient should be free of leukemia cells in the blood and spinal fluid. In time past treatment stopped there, but there was a high rate of relapse and when the disease returned it was more virulent than before and more difficult to treat. There was less than a 5% chance of survival.
Doctors found that extending treatment to keep the leukemia from returning lessened the chance for relapse and therefore increased the chance for long term survival. The optimum length of treatment was established at 3 years after initial remission in boys, 2 years for girls. Leukemia hides in the brain and in the testicles even after bone marrow and blood test clear. Relapse generally occurs in those areas, thus the use of cranial radiation and the longer treatment time for boys.
After initial remission, every day a patient remains free of leukemia the prognosis for long term survival increases. If they relapse the whole process starts over with new induction treatments, often including total destruction of the bone marrow and transplant of donor marrow. The odds of a second or third successful remission drop exponentially, and treatment becomes as potentially deadly as the disease.
Sarah Hershberger completed induction. Her parents balked at the long term use of chemotherapy as a preventative because of the effects the drugs had on their daughter and the fact that those drugs greatly increase the risk of other types of cancer later in life. It is a calculated decision that can only be made by the patient and their family. Cancer, especially leukemia, is an odds game. Your odds of keeping the leukemia at bay over the long term are increased with further treatment but you also increase your odds of developing other cancers, heart problems, and a myriad of late effects caused by the chemotherapy and/or radiation treatments.
My son's doctors were very informative at each step in the process, telling us and him the benefits and risks of continuing to each successive phase of treatment. At each juncture we were required to provide informed consent before treatment continued. Sarah's parents were apparently not given sufficient information and when they did find out a little of what the treatment could do to their daughter they withdrew their consent for treatment. In their case the doctors, and courts, want to force treatment on Sarah and a judge has ruled that the “State” doesn't need the informed consent of the patient or her parents to continue.
The Hershbergers did not deny their daughter medical treatment, as many articles suggest. They took her to the hospital and she was treated for ALL. By all reports she is in remission and tests show she is free of leukemia. Her parents have said that if she relapses they will seek further treatment, but they have chosen to use alternative methods to keep her in remission. That is their right. The “State” has no “rights” in the matter, regardless of what a judge rules. All cancer treatment is experimental – it is a work in progress with continuing clinical trials to improve outcomes and lessen the adverse effects of treatments.
Each individual and family must decide for themselves what level and type of care and treatment they are comfortable with. My son has chosen, with advice from his doctors, deep soul searching, and input from family and friends, to follow the prescribed treatment through to the end. That is his choice. I thank GOD he is old enough, and mature enough, to make those decisions for himself because I would not want to decide for him. By all accounts Sarah made her choice and her parents support it completely. I would have done the same if my son had chosen to end treatments at any point along the way.
It is not the place of governments, doctors, or the courts to decide how and when we receive medical treatment of any kind or what medical decisions parents make for their children. It is arrogance on the part of the doctors and the hospitals to think their experimental treatment is better for Sarah than the alternative treatment she and her family have chosen. One can only wonder if money, more than the health of the patient, motivates their attempt to control Sarah's healthcare. It is very possible that the alternative methods will prove in time to be just as effective as the prescribed chemotherapy. That will cost doctors, hospitals, and drug companies billions in lost profits.
Cancer treatment, as I said, is a work in process. Research and trials of alternative treatments are just as valid as the clinical trial my son took part in. Sarah could relapse. She could die. But she could also relapse using accepted treatment protocols. There is no absolute cure for leukemia. Choosing one treatment over another is not denying care! It is a choice that can only be made by the patient and her family through prayer and faith. The Hershbergers seem to have that under control. My prayers are with them.
Please help Sarah's family with her treatment and legal costs by donating HERE.