Monday, January 3, 2011

Remember Emma

“I see two Pecies”

That was how it started, on a camping trip in 2003. Emma was 5 years old. She had been having headaches and now was seeing two of her Aunt Patrice (Emma calls her Pecie). A trip to the doctor and a MRI revealed a malignant brain tumor. She was admitted to WFUBMC and Dr. Glaizer performed surgery revealing an inoperable malignant Pinealblastoma, a highly aggressive, rare brain tumor. Dr. Nagakawa saved her life the first night in the Intensive Care Unit when the pressure in Emma’s head became critical. She required a second surgery to remove some of the back of her brain in order to reduce the pressure. After a week in the hospital Emma went home. She slowly recovered until she went back to being a little girl who loved to play, color, and ride her bike.

After meeting with her cancer specialists it was decided to start intensive radiation therapy. Emma went to the hospital Monday through Friday and was sedated for therapy. She developed burns on her head and reactions to the sedation, but she made it through. Next came the chemotherapy. She was admitted to the hospital every few weeks for several days for a round of chemo. She was nauseated, lost some of her hearing, required multiple blood transfusions, but she made it through.

After one year of intensive radiation and chemotherapy a miracle happened - the tumor started shrinking. Follow-up scans all confirmed that the treatment had worked. The tumor was being killed and no new areas of cancer were developing. However, not all of the news was good. The intensity of the treatment was having a bad effect on Emma’s developing brain. The treatment which had killed the tumor was starting to kill Emma’s brain cells and all of medical science was helpless to stop this. We started noticing that Emma was becoming more forgetful. She lost the ability to say her ABCs. She no longer had the ability to ride her bike. She went from walking to crawling. She could not control the left side of her body. As Emma put it, “My left arm just does what it wants to do.” But nothing would stop Emma. She loved going to school and church, rarely complaining about the multiple trips to the hospital and doctors. She remained cheerful and positive, always knowing that her future was in God’s hands. One year after going to the Nutcracker Ballet she said, “I am going to be a ballerina when I grow up - as soon as I learn to walk again.”

In 2008 at the age of 10 Emma made the decision to publicly accept Jesus Christ as her Lord and Savior and be baptized. For weeks before her baptism she was so excited that she wanted to tell everyone about her decision and invite them to come to her church to see her get baptized. The Friday before her baptism Emma and her family were eating at the local ice cream stand. Sitting at the next table was a group of rough looking bikers. Before anyone had realized it Emma had struggled over to their table. She told them that she was Emma Isenhour and she had decided to accept Jesus into her heart and be baptized and they should come to see. Sure enough a crowd did turn out. Emma, dressed in a white gown, was baptized by Reverend Michelle Myers at Cornerstone Baptist Church in Valdese, NC. Her younger sister Anna was baptized the same day. Emma wrote a letter that was read that day. She simply said,“I decided to be baptized because I decided to and I’m mature, and I am excited about being baptized. My sister is going to be baptized too. I have never been baptized but I am excited about being baptized”.

Several years after Emma’s diagnosis of cancer I was sitting in a medical lecture from a prominent National Institutes of Health researcher. He was speaking about the growing opportunities for research on treating Adult Onset Diabetes, 80% of which is obesity related. He proudly spoke about the billions of dollars that were being poured into research on ways to treat Adult Onset Diabetes. He presented a diagram showing the mechanism of diabetes. It started on the left with the word “Overnutrition” with an arrow pointing from there to the word “Obesity” and then multiple arrows pointing to all the cellular areas that diabetes effects. The rest of the lecture was spent going over research looking at drugs that are being developed (and the hundreds of billions of dollars being spent to develop them) that treat diabetes at these cellular levels. As a Christian physician I was shocked. Here we have a largely preventable disease that starts with what scientists call “overnutrition”, what Christians would call “gluttony”, which is being treated at the cellular level with huge healthcare resources being spent on this endeavor.

I thought about the many patients I see who develop diabetes and other chronic illnesses. For years I would tell them how to prevent the development of disease - don’t smoke, watch your weight, exercise regularly, eat more fruits and vegetables and less processed foods - and time and time again they would not follow my advice and go on to develop diabetes, heart disease, hypertension, and obesity, unwittingly consuming huge amounts of healthcare resources on largely preventable diseases. I thought about my own struggle to live a healthy life in today’s busy world and the excuses that I have used over the years to justify my unhealthy behaviors.

I Remembered Emma.
I remembered a little girl who did nothing to deserve or contribute to her disease. I remembered all the other kids with cancer we met at Brenner Childrens Hospital, some of whom are no longer alive. I remembered hearing that medical science has nothing else to offer Emma. The reality is that while billions of dollars are being spent on adult, lifestyle induced illnesses only a fraction is being spent on childhood cancer. And for a very simple reason - MONEY! We live in a country of limited healthcare resources. If money is being spent on one problem there will be less to spend on others. Currently in our society the main focus of much of the research and treatment is on adult lifestyle induced illness, such as diabetes.

Look at the numbers,

According to Kate Shafer, Director of Advocacy for CureSearch National Childhood Cancer Foundation, most federal funding for childhood cancer research comes from the National Cancer Institute (NCI), with a small amount coming through appropriations. Schafer says, "It's a bit difficult to determine how much in any given year is spent on childhood cancer research. It is around $170 million per year."

In comparison, the US spends
- over 200 billion dollars a year on adult onset diabetes, 80% of which is preventable with a healthy lifestyle.
- over 150 billion each year to treat the effects of obesity.
- over 150 billion each year to treat smoking related illnesses.

That’s 500 billion dollars spent each year to treat a choice.

Much of this money is spent on developing new drugs which try to compensate for poor health choices. Because of the high cost of developing new drugs, pharmaceutical companies tend to focus on only the most common disorders that have the most potential for future income from sales of the drug (so-called "blockbuster drugs"). Fortunately, childhood cancer is relatively rare. However, this has the unfortunate effect that pharmaceutical companies are generally not interested in pursuing treatments designed just for childhood cancer so most childhood diseases are treated with “adult” medications which have detrimental effects on developing children.

Despite very aggressive therapies that approach the limits of tolerability for the child, the overall survival rate for childhood cancer has remained unchanged since 1998. One in four children who are diagnosed with cancer in the U.S. will die within five years of their diagnosis. Of those who do survive, 30% will have severe side effects, including cognitive deficits, kidney failure, heart failure, and secondary cancers caused from the traditional toxic treatments. Because of the severe toxicity associated with many current treatments and the plateau in survivorship rates, future success is dependent upon the development of new therapeutic approaches. However, the funding for pediatric cancer clinical trials has gone down every year since 2003. As a result, the Children’s Oncology Group (COG), the world’s pre-eminent childhood cancer research organization, has been forced to put 20 new studies on hold and decrease enrollment in new clinical trials by more than 400 children next year. All the while funding for adult lifestyle induced illnesses has increased as the prevalence of these diseases has increased.

If Emma had been told about something that she could have done to prevent her brain tumor I guarantee that she would have done it. As doctors we see patients every day who are developing health problems - diabetes, high blood pressure, heart disease, lung disease, arthritis. We are able to warn them of these impending diseases and tell them how they can be avoided:

The 4 Principles of Healthy Living:
1. Do Not Smoke.
2. Maintain a Body Mass Index (BMI) less than 30
3. Exercise 150 minutes/week.
4. Eat 5 servings of fruits or vegetables daily.

But, rarely do people take our advice. Many patients believe that they can abuse themselves to the point of disease and the healthcare system will be there to bail them out - a pill, an injection, a surgery. Or, they fall prey to the alternative medicine industry with their unproven quick fixes - vitamins, supplements, miracle juices - spending billions of dollars each year on these delusions.

Stop The Madness
Stop killing yourself on a daily basis. You do not need to become a “health nut” or become “skinny as a rail.” Understand that this call to better health has little to do with focusing on weight or physical appearance. While obesity is a serious problem in our nation, you can be obese and still strive for better health by working on healthy eating habits and regular exercise. Likewise, you can be at a healthy weight, but, be destined for poor health by smoking, eating poorly, and being sedentary. This is a call to start following the God-given basics of healthy living that we all honestly know we should be doing. Medically we know that people who follow these healthy principles rarely go on to develop chronic health problems and utilize far fewer healthcare resources.

How can you do this?

Remember Emma…
The next time,
- you cannot get off the couch to exercise because you have no motivation.
- you tell your doctor that you gained 10 pounds because you are a “stress eater.”
- you “can’t say no” to the Krispy Krème donut.
- you say you will quit smoking next year.

Remember Emma…
Because, as Christians we are better than this kind of life. We are called to be “holy and blameless before God.” (Ephesians 1:4) Remember that as Christians the old excuses of the world (a busy schedule, a demanding job, too much stress, financial worries, whatever) can no longer justify our sin and self-destruction.

Remember Emma…
Then get on your knees and ask for God’s strength and forgiveness. Join me as we beg God to forgive us for taking health care resources from helpless children in order to research and treat our self-induced health problems. Let us all beg God to forgive us for allowing ourselves to become victims of this world, for falling prey to the socially acceptable sins of gluttony and sloth, for buying into the delusion of a “quick fix.”

Remember Emma…
Pray for her body to be healed.
Pray for a miracle in her life and in your own.
For mortals it is impossible, but for God all things are possible.
Matthew 19:26

Then, let us start living lives worthy of being called Christians.
This day I call heaven and earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, so that you and your children may live.
Deuteronomy 30:19

Ray Morrow, M.D.