Pediatric Cancer: Cure Desperately Needed

Neuroblastoma is the most common cancer in infancy with about 650 new cases diagnosed every year in the United States.  More than 12,000 U.S. infants and children are diagnosed with some type of pediatric cancer every year.

Neuroblastoma is cancer that arises in immature nerve cells affecting mostly infants and children.  Usually beginningin the nerve tissu of one of two adrenal glands one on top of each kidney in the back of the upper abdomen.  Adrenal glads produce hormones that help control heart rate, blood pressure, blood sugar and the way the body reacts to stress.  Neuroblastoma may also begin in the chest, abdomen, nerve tissue near the spine in the neck, or the spinal cord.

Sometimes formed before birth, but rarely found until tumors begin to grow and cause symptoms, neuroblastoma most commonly affects children under the age of five.  Very rarely, neuroblastoma may be discovered by fetal ultrasound prior to birth.

Neuroblastoma, sometimes is caused by a gene mutation passed from parent to child, generally presents at a younger age than neuroblastoma that is not inherited and often consists of more than one tumor in the adrenal medulla when inherited.

By the time neuroblastoma is diagnosed, the cancer has usually metastasized (spread), most often to the lymph nodes, bones, bone marrow, liver, and skin.

According to the National Cancer Institute (NCI) website," possible signs of neuroblastoma include bone pain and a lump in the abdomen, neck, or chest.  The most common symptoms of neuroblastoma are caused by the tumor pressing on nearby tissues as it grows or by cancer spreading to the bone."

Early symptoms of neuroblastoma are often vague making diagnosis difficult.  By the time symptoms are apparent, 50-60% of neuroblastomas present with metastases.  Symptoms which should be discussed with a health care professional are:

    * Lump in the abdomen, neck, or chest.
    * Bulging eyes.
    * Dark circles around the eyes ("black eyes").
    * Bone pain.
    * Swollen stomach and trouble breathing in infants.
    * Painless, bluish lumps under the skin in infants.
    * Weakness or paralysis (loss of ability to move a body part).

Less common signs of neuroblastoma include the following:

    * Fever.
    * Shortness of breath.
    * Feeling tired.
    * Easy bruising or bleeding.
    * Petechiae (flat, pinpoint spots under the skin caused by bleeding).
    * High blood pressure.
    * Severe watery diarrhea.
    * Jerky muscle movements.
    * Uncontrolled eye movement.
    * Swelling of the legs, ankles, feet, or scrotum.

Tests that examine many different body tissues and fluids are used to detect (find) and diagnose neuroblastoma and may include a physical exam and history, 24 hour urine test, blood chemistry studies, cytogenetic analysis, bone marrow aspiration and biopsy, cellular and/or tissue biopsy, x-ray, CT scan, neurological exam, ultrasound, immunohistochemistry study, and metaiodobenzylguanidine (MIBG) scan.
  
The prognosis (chance of recovery) and treatment options depend on many factors, the age of the child when diagnosed, stage of the cancer, where the tumor is located in the body, the shape, function and structure of the tumor cells and whether the cancer has spread to the lymph nodes.

Perhaps one of the most important factors in prognosis and treatment of this terrible cancer is the vast amount of information that is unknown regarding neuroblastoma, one of many pediatric cancers which continue to claim lives of children, and the fact that there is no cure.

The mission of the  Pediatric Cancer Foundation (PCF) since it's inception in 1970 has been to find a cure for childhood cancer. This non-profit charity raises money for research, state of the art equipment/instruments and parent/patient care for world renowned doctors at these PCF supported hospitals

    * Children’s Hospital of New York-Presbyterian
    * The Hassenfeld Children’s Center at NYU Medical Center
    * Memorial Sloan-Kettering Cancer Center
    * The Steven and Alexandra Cohen Children's Medical Center of New York
    * Maria Fareri Children’s Hospital at Westchester Medical Center

PCF receives NO government funding.  PCF receives NO funding from pharmaceutical companies.  Since 1970, over 90% of every dollar raised/donated by PCF supports their mission to eradicate children's cancer.

While neuroblastoma is a horrible, dark, ugly cancer; the faces of the sweet, innocent children that fight for their lives are beautiful and their smiles sweet.

Toby's mom, Mookie remembers  starting her blog in the spring of 2007, almost three years ago, just days following 4 year old Toby's diagnosis of neuroblastoma.  She writes, " I spent most nights in a pit of fear, adjusting tubes, cleaning vomit and watching my child waste away. In between terror and tears I searched constantly for "neuroblastoma blog" online, in desperate need of finding others like Toby."

"I found a boy named Will, who lived in Boston, and through his father's writing discovered Erin, Max, Sam and Erik. These were seasoned neuroblastoma families, with a lot of history and knowledge. The children were at various stages in treatment and the parents carefully and precisely outlined every drug and reaction. Their blogs became my source of news and my worldview. Pretty soon I found myself starting at the beginning and reading each and every post, delighting in Max with long golden curls, following Erin at camp, marvelling at family photos of Sam with his red-headed brothers, putting Erik's words to memory and always circling back to Will, where it all started."

"Each of these five children gave me respite, hope, and a sense of belonging. Through their parents' words I was able to string my days together and remain human. I linked to their sites with a sense that these were the children who would make it. How could they not make it? They each lived so large—running, laughing, overcoming every obstacle with pluck, determination and joy."

     **Will.      **Erin.      **Max.     **Sam.     **Erik.

"In less than 2 years, four of these five children have died."

Mookie emotionally describes their journey, "This is the beast neuroblastoma. Look on any neuroblastoma child's site, and the links to dead children far outweigh the links to the living. In our world we call them angels and warriors, awful words to describe a reality that should not be. I know this is difficult to read. And probably not the reason you dropped by. I'm sorry. As I wrap my arms around Toby, and virtually around Will, I wish Erin, Max, Erik and Sam were here."

"During the year that hospital became home, Toby spent most of his waking hours in bed. Moving was difficult. So we used a wheelchair to get to surgery, radiation and countless middle-of-the-night emergency scans. And we carried Toby everywhere else: to the bathroom and the IV room, to look out the window as the world spun madly on. And we cried as his body withered, his little bones pushing through skin."

"He was 4 years old, the age when children laugh and run like wildfire. He could not walk more than a few steps."

Toby's mom recalls pushing him to kindergarten in a stroller for more than 6 months, "while weathering the disapproving glances of those who thought he looked too old for a stroller."

"After a year Toby began to walk again.  At first he could only manage half a block, but we learned to scope out places to rest. Soon he could string together a path of steps to the front door."

In May of this year,  Toby walked 4.5 miles in Central Park with his brother Yoni and friends, to raise money for pediatric cancer research. He walked for the ones who still battle and for the children who have died.  "A chain of steps for Erin, Max, Sam, Erik, Gus, Carter, Jack, Ellie, Courtney, Austin, Santi, Christi, Eden, Emily, Lucas, Penelope, Nathan, Kendall, Spencer, Pierce, Sydney, Brody, Katie, Xinxin and sadly, many, many more."

The purpose of Childhood Cancer Awareness Month is to bring attention to childhood cancer and survivorship issues nationally.  Many organizations dedicated to childhood cancer awareness, research and support recognize September as Childhood Cancer Awareness Month and use the time as an opportunity to reach out and educate the public about the prevalence of childhood cancer, the need for greater funding for research and support services and the long-term effects faced by childhood cancer survivors.

The symbol for Childhood Cancer Awareness is a gold ribbon.