Childhood cancer Awareness (Action) Month - Day 27

This is Michael. Today is Saturday, and today we attended "Kickin' Kids' cancer," a great event at the XL Soccer facility in Orlando. Melissa posted about the generosity and kindness of the owners of this nationwide business with facilities in 5 US cities and agents worldwide, Tara and Ciaran McArdle, and their kindness to hold a benefit for the Sophia Soto family and to benefit funding for research for children's cancer. Last year at this time, Cannon had just returned from our month in Manhattan and his 13 hour tumor resection surgery at Memorial Sloan Kettering. Since then, and over the last year, many more people have come to know Cannon and our fight for his life and to educate as many as we can about the lack of funding for pediatric cancer research and our life mission to change it. So many ask about Cannon, and we are humbled and honored. The most common question is "What type of cancer did he have?" And followed by "What is neuroblastoma?"

So, I thought I would take today and talk about just one of the 12 major types of children's cancers and the cancer we have been fighting with Cannon - neuroblastoma.

Cannon was diagnosed with stage IV high risk, amplified neuroblastoma on April 19, 2013. That evening, when Melissa and I received the call from the oncologist reporting the diagnosis, neither of us knew what neuroblastoma was. I had heard the word before and had watched the St. Jude infomercials over the years. But I ignorantly didn't know that it meant cancer, and we didn't know a thing about it or what path was next for Cannon. Eighteen months later, we now have an education we never wanted. I'd like to share more of that with everyone in the hope that these facts will help spread awareness so that ultimately, the cause of neuroblastoma and the other 11 major types of children's cancers can someday be solved and no more parents will receive a call or be told the words "Your child has cancer". 

Childhood cancer Awareness Facts of the Day: 

Neuroblastoma (NB) is a very rare cancer. Of approximately 13,500 new cases of childhood cancer in the U.S. each year, only about 650-700 are neuroblastoma. There is similar incidence in other countries and no clear differences between ethnic groups.3 About 55% of all NB patients are boys.

NB is a pediatric cancer. Neuroblastoma generally develops in young children—half of all cancers diagnosed in infants are neuroblastomas. The median age at diagnosis is about 2 years old. Numerous children are diagnosed after age 2, but the number of diagnoses decreases as age increases. Adult diagnoses of NB account for less than 2% of all cases.

No one knows the cause of NB. Although the cause of NB is unknown, most physicians believe it is an accidental cell growth that occurs during normal development of the sympathetic nervous system. Only 1-2% of all cases are hereditary, and a particular genetic mutation (ALK) has been implicated in most of those cases.

Source: Handbook for Parents of Children with Neuroblastoma, Children’s Neuroblastoma Cancer Foundation, , revised 5/31/11. 

“Neuro” indicates origin in nerve cells, and “blast” means immature cells. Normal neuroblasts (baby nerve cells) begin in embryonic tissue and grow and mature into functioning nerve cells. neuroblastoma means the immature cells reproduce forming a mass and do not develop into functioning cells  (the "oma" ending denotes a tumor). 

Neuroblastoma is a solid tumor—a lump or mass—originating from neural crest tissue that is part of the sympathetic nervous system (SNS). This part of the nervous system is responsible for the fight or flight response when stress occurs. Nerves of the sympathetic nervous system run parallel along the outside of the spinal column and connect to organs. Since NB arises at the interface between the nervous system and the endocrine system (the hormone producing organs—NB is one of the few cancers that secrete hormones), it is also included in the class of neuroendocrine tumors.

The most common place for NB to originate is on the adrenal glands located above each kidney (40% of localized tumors and 60% of wide-spread disease). Cannon's tumor originated here. NB tumors can also develop in nerve tissues in the neck (1%), chest (19%), abdomen (30% non-adrenal), or pelvis (1%)—anywhere along the chain of the sympathetic nervous system.  

In rare cases, no primary tumor can be discerned. By the time Cannon was diagnosed, the tumor had grown and spread to his abdomen, pelvis, had encased his kidneys and was wrapped around his aorta and pressuring his vena cava vessels.   Understanding the involvement and size of Cannon's primary tumor makes appreciation for the skill of Dr. LaQuaglia and his team at Memorial Sloan Kettering even more remarkable.    

Please help Melissa and me and all the parents of children with cancer and all those advocating for these kids---help us increase awareness and action so that someday, someday cancer in children will be no more. Thank you.