When I saw Emmalee exhale for the last time I was forever changed. I never dreamed my life would have so many twists and seemly impossible roadblocks. I firmly held the belief my children would bury me, not the other way around. Emmalee was only nine years old when she fell victim to the second leading cause of death among children. [Emmalee’s FaceBook page]
Accidents are the number one killer of children and cancer is the number one disease that kills children or second overall killer of children. One in five who are diagnosed will die from the disease. According to an article in TIME [link], 80% of children who survive cancer treatment will end up with a life threatening, disabling or serious health condition by the age of 45. Also, this article cited a study of 1,700 children, which showed that 98% of those children who survived cancer treatments ended up with chronic life long problems such as new cancers, heart disease or abnormal lung functions.
Is Chemotherapy the Answer?
Emmalee had two rounds of in-patient hospitalization chemotherapy. As a result of chemotherapy, she had to have her intestines removed out of her body to search for a hole caused by chemotherapy. A few cancers like Leukemia boast an 80% survival rate, but if the treatments cause a multitude of long-term, life altering issues, or other diseases and problems, then I dare say this is an archaic way of treating this horrific disease. For a nation that has made amazing technological advances and we still use chemotherapy as our best solution fighting cancer, I question our resolve.
Ribbons and Awareness
We all know that the pink ribbon represents breast cancer awareness, but how many know the gold ribbon represents awareness for all pediatric cancers? In October, which is breast cancer awareness month, we see the NFL players wearing pink socks, pink shoes and pink hand warmers… Breast cancer advocates have done wonderful job marketing for money and clout.
Appropriateness of Campaigns
I find it a little strange that high schools and even elementary schools are promoting breast cancer awareness, when their own classmates are suffering from cancer. Recently, I posted a photo on Emmalee’s FaceBook page [link] and one of the comments from a young man was “In America we like boobs, not kids.” I don’t believe this represents the majority mindset by any means, but it does speak to the over-sexualized society we live in. Is it appropriate for students to be advocating for breast cancer when there are plenty of youth-focused foundations?
A Change is Coming
This year there is finally a change occurring. Major League Baseball is going gold for pediatric cancers [link]. This is great news for us advocates who have worked so hard to have pediatric cancers recognized.
Don’t ask How and Why
When we asked the doctors the taboo question of why and how Emmalee got this cancer, ultimately they had no answers. The first day she was diagnosed we were asked by at lease three different doctors if we had been to a third world country where Hepatitis B runs rampant. We had not, nor was she a drinker of alcohol, this being another cause of her type of rare cancer.
What Causes Childhood Cancer?
This is the case in most pediatric cancers: few answers to troubled questions. There is no rational explanation as to why or how each child ends up with this heinous disease. With some adult cancers there is at least an explanation, i.e. genetics, lifestyle or personal choices, but no casual root has been established for pediatric cancers.
Six Children Die Everyday
Any time we see a child die or killed on the news, our hearts skip a beat in sorrow. Every day, however, in homes and hospital beds across the country, six children die of cancer, according to www.cancer.gov.
In the last few days of Emmalee’s life we knew her time was up. She hated the hospital and we didn’t want her to die there, so we took a big risk and had an ambulance take her home to die. The doctors thought the ride would kill her, so we rode with her just in case. But Emm was strong and wanted to be in her favorite place at home to pass. When we arrived home, I gently picked her up from the gurney and carried her to the couch in our front room. Her breathing slowed and within 20 minutes she peacefully slipped away.
Plain and simple, we need to stop this disease. ###
Steve Havertz has been a Licensed Clinical Social Worker for 22 years. He is the author of many articles and two books, including Dragonfly Wings for Emmalee [link about the book].