Saturday, November 30, 2013

Amish Girl Flees Forced Chemotherapy



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.


Sunday, March 31, 2013

Tragedy: Sometimes The Hero Dies (updated)

 I originally posted this April 1, 2012. It's worth reiterating. (updated)


Writing romance, the Happily Ever After (HEA) ending is expected. There are conflicts, setbacks, tragic events, but in the end the hero – against all odds – triumphs, right? That is our modern convention, the “formula” of a good romance regardless of genre. The hero and heroine ride off into the sunset victorious. But that's not real.

The ideal of a happily ever after fills much of our literature, not only romance. In action/adventure our heroes are beaten and bruised but they survive to kick ass in the final battle. In our mysteries the killer is caught, evil is thwarted, good is vindicated, and everything works out in the end. But some of our greatest heroes are tragic heroes. They live in a flawed world where sometimes evil wins. That's real.

Historically, tragic romance was very popular. In our modern society we seem to prefer rose colored glasses to the gray tones of life. We want epic fantasy where “should” prevails over “does.” We cling to our childhood beliefs of fairness and justice. Yet even now tragic heroes are our most powerful heroic icons. Though the accepted paradigm demands HEA, when heroes die audiences morn. They connect emotionally to the reality that life isn't an HEA Romance.

In the Alien saga Ripley throws herself into a vat of lead because she's infected. In the Matrix trilogy, Trinity's death is powerful, and Neo – blind and beaten – staggers away to certain death. Characters who are willing to die in order to battle evil and save others are our truest heroes, even when resistance is futile, even when evil seems to enjoy the final HEA. It is by their struggles that our heroes are defined, not their victory. Living on in a happily ever after world – as if nothing bad actually happened – often cheapens the hero's struggle.

My son the philosopher often takes issue with one of my favorite quotes, “What doesn't kill you makes you stronger.” He says that's a logical fallacy. What doesn't kill you can, and often does, leave you scarred and broken. For the hero to walk away victorious and live the good life with the heroine is often an unrealistic ending tacked on merely to satisfy the HEA requirement of modern literature.

In Tolkien's classic, Frodo and Sam don't retire to the Inn in Bree to tell tales, drink wine, and enjoy their victory. Frodo survives – though scarred and broken – and sails away with poor Bilbo. The Shire is no longer a peaceful and idyllic home, and Sam must say farewell to his beloved and tragic Mr. Frodo forever. The enemy is defeated, yet the scars remain – nothing is ever the same – there is no HEA for the heroes.

Today is Easter. Today week we remember what has often been called, “The Greatest Story Ever Told.” The hero triumphantly entering Jerusalem, the hero routing the temple of thieves and money changers, the hero standing before corrupt rulers and being nailed to a cross and left to suffer and die – his friends abandoning him. This is the week we remember the truth – “There is no greater love than one who will offer up his life for his friends.”

Easter morning we celebrate our hero's ultimate HEA, but this week we must take into our heart the struggle that brought that final victory. It is in the hero's life, his suffering and death, that we find wisdom. It is in taking up our cross daily that we give ourselves to others and live not for our own HEA but for theirs. Life is often tragic, and good seems to often fail, but it is not in the winning or losing that we are defined. It is in how we live. When that life is an all-in, willing to give up everything to hold our fellows up, type of life we become the heroes of our own story.

True heroes are not motivated by achieving a personal victory and enjoying their ultimate HEA. Their motivation comes from a servants heart. The true hero battles, and gives all, to the cause of others. These are the heroes who touch the deepest part of us. They stir our soul to join the battle, to lift up our fellow man, to give our life for our friends. In literature, and in life, heroes are defined by what they sacrifice not what they gain. Our tragedies and our reaction to them, not our HEA's, define humanity.

Those who follow my blog know that my son Joshua is being treated for leukemia. Life often throws you a curve ball and sometimes you get hit by a wild pitch. But one thing I will take away from this experience is that true heroes still exist. Good friends have lifted me up and kept me going this past year. Please, visit Indies Unite For Joshua, read the list of people who donated books and services to the campaign, then look at the list of contributors. These people are modern heroes. Support them, buy their books, visit their blogs, follow their twitter streams and "like" their pages..

We, and our characters, are ultimately defined by how we help others. Whether you are Christian, Muslim, Jewish, Hindu, Buddhist, pagan, agnostic, or atheist – caring for others is the noblest of human traits. I praise God for all of you this Easter because all of you have shown me true love. The outpouring of support for Indies Unite For Joshua crossed all religious, cultural, and political boundaries showing that compassion is universal and has offered my personal story the chance for a real HEA.

Thank You.

xoxox

max

Sunday, March 24, 2013

How much should I pay for publishing services?


Pricing of editing services, freelance writing, and design work is based on many factors. The most important of these factors is the particulars of the project itself. Developmental editing of a full novel is far different than proof reading a blog post -- as is ghost writing a technical manual as opposed to writing a magazine article. But there are some basic averages that can give you a ballpark figure of your costs.

One great resource is the Editorial Freelancers Association chart on common editorial rates. Yet a quick look at the chart gives a wide range of possible prices. $30-$40 per hour for basic copy editing at 5-10 pages per hour? Okay, my 90k fantasy manuscript is about 360 pages (250 words per page is an industry standard) so that would be $1080.00 - $2880.00. That's a wide range!

And what about design, layout, coding, or freelance writing assignments? The chart covers some of these as well, as do other resources you can find online, but again the range is vague. You could check out some of the publishing services like Amazon's CreateSpace. They offer basic copy editing for $120, for up to 10k words, or $0.012 per word. Hey! Now we are getting somewhere. But dig deeper.

For my fantasy manuscript that would run $1080.00! That's in line with the low end of the chart and my manuscript would get a very basic copy edit, perhaps running it through an advanced spelling and grammar check program a little better than what you get with MS Word. Now I don't know that for sure. An actual real person might read my manuscript, but you get what you pay for. You'll also notice that CreateSpace suggests multiple edits before you publish.

The industry's accepted path for a new manuscript is a developmental edit (if needed) followed by a good substantive or line edit, followed by a good copy edit, and perhaps some fact checking if it's called for. Now the price range for my 90k novel would be somewhere around $4000-$25,000 without the developmental work or fact checking! Now you can see why publishers are so picky as to what manuscripts they accept -- they shoulder all that editing, design, and printing costs!

The advantage of an Indie writer hiring an Indie editor/publisher such as Underground Press Publishing is a unique pricing paradigm based on the project itself, not industry averages or a set price-per-word. An Indie press like Underground Press Publishing can offer you the exact services you need and an unique price quote based on the particulars of your individual project. The price will of course be competitive when compared to similar services at other companies, but you'll only pay for what you need -- not a cookie cutter standard package -- and you'll get one-on-one access to your editor.

Now the ballpark figure I mentioned earlier is pretty simple to arrive at. You can expect to pay around $0.015/per word for copy editing and around $0.025/per word for more in-depth editing. Developmental work is better charged per-hour, as every manuscript is different, but it should average around a nickel-a-word overall. Book covers are art and can range approximately $250-$500 for a .jpg cover image ready for upload and freelance writing depends on the type and length, but expect to pay around $0.25/per word.

I hope all of this helps! If you have any questions, or need some free advice, drop me an email, catch me on twitter, or leave a comment here.