"DNR"

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This is Michael. Today I am going to make a lot of people upset. Warning:  If you don't like harsh reality and are upset easily by direct talk about children's cancer, don't read further. In the past and still occasionally, I will receive a private email or message that lets me know that my writings, presentations, pictures or facts are offensive to the writer and I hurt somebody's feelings with my words and thoughts and posts about our experience and what we are doing to bring about better therapies to children with cancer. Today, I make no apologies. Say what you want to me or anyone at CKc... Live with it, because Charlie didn't get that chance.

 

Charlie Keith died this week. He was 7 yrs old. He died of relapsed neuroblastoma. Take a look at the picture I have attached to this post. See the "DNR" bracelet on Charlie's wrist? Know what that means? It means "Do Not Resuscitate", as in "We have done all we can for Charlie, but we can't save his life and he is going to die."

 

Let the rage build up in you. Imagine seeing that on the wrist of your child, a child that has already suffered immensely and has been so violently ill from chemotherapy and other barbaric, antiquated treatments that are largely ineffective and did nothing to help Charlie and all the other children that die from cancer each day. This is what childhood cancer is! This is what really happens on pediatric oncology floors in our supposedly modern day of medicine. This is why CKc and others do what we are doing --- how unjust and wrong.     

 

So go ahead and write me and tell me how I have hurt your feelings or insulted your family member who works in the field of medicine, or somehow insulted an adult cancer sufferer by speaking about children's cancer, or how my words are too harsh or how your child was the one in the picture holding the balloons in the ad for a children's cancer hospital. Go ahead and blast away, because you do nothing but perpetuate the status quo and shut your eyes to the reality of child dying at age 7, and why we still don't know how or why cancer forms in children or how and why it relapses, assuming, of course, that the child even survives the ridiculous harshness of the protocols currently in place and largely unchanged for 20+ years. Rounds and rounds of chemotherapy that burns and disables, surgeries that take the child to ventilator dependent, transplants that take the child to near death and cause immeasurable suffering, radiation that causes lifetime toxicity and side effects and burns and immunotherapy that is so painful it is described as "watching your child be electrocuted" for 30 minutes and then suffer for 10 hours a day, five days in a row (once a month for 6 months). Go ahead and take your shots. I don't care and never will. A child died today, and you are the problem, not the solution. 

 

Charlie Keith was a sweet 7 year old boy who liked cowboys, cowboy boots, dinosaurs and super heroes.   He was diagnosed in March, 2012 with high risk neuroblastoma, same as Cannon. He was declared NED, after all of the treatment described above, in April, 2014. He finally got to go back to school in August, 2014. He relapsed in October and passed away this week. His final indignity of childhood cancer? Wearing a "DNR" bracelet. 

 

Childhood cancer Awareness Fact:  Neuroblastoma is a rare cancer that forms from immature nerve cells. It usually begins in the adrenal glands but may also develop in the abdomen, chest or in nerve tissue near the spine. Neuroblastoma typically occurs in children younger than five years of age. According to the National Cancer Institute, neuroblastoma occurs in approximately one out of 100,000 children and is slightly more common in boys. There are an estimated 650 new cases of neuroblastoma diagnosed in the United States each year. Patients with high-risk neuroblastoma have a 40 to 50 percent chance of long term survival despite aggressive therapy.

Source: fda.gov    

 

Neuroblastoma accounts for approximately 7% of children struck with a form of cancer, but is responsible for 15% of childhood deaths due to cancer. The relapse rate of neuroblastoma for those that can clear it initially is still 60%.   

 

This is the reality of childhood cancer. Help us. Help us and Alex's Lemonade Stand and CureSearch and St. Baldrick's Foundation. Help us to fund research strictly devoted to cancers found only in children, to improve therapies, increase early detection methods, make treatments less painful and toxic and debilitating, and ultimately find a cure for our children. Make a donation to CKc today, or to one of the above charities who strongly believe in research as the answer to cancer in children.

 

No child should ever have to wear a "DNR" bracelet. cancer in children is wrong. It is unjust. It is unnecessary. Eternal God, in whom mercy is endless, and the treasury of compassion inexhaustible, look kindly upon us and increase your mercy in us, that in difficult moments we might not despair nor become despondent, but with great confidence submit ourselves to your holy will, which is love and mercy itself. For the soul of Charlie and all the children who have passed unjustly from cancer, we pray.