This is Michael. Today is September 15th and we are halfway through the month and Childhood cancer Awareness Month. So many good things have happened this year and this month, and we are making progress by informing as many as we can about this outrage we call pediatric cancer. The electronic billboards went up in Florida yesterday, to let everyone know the facts of pediatric cancer like we are posting here daily. We also got word yesterday that the Goodyear Blimp is now displaying a CKc message for Childhood cancer Awareness Month. Be on the lookout for the Blimp and these boards, but most of all, help us in just one small way: tell a friend, a neighbor, a relative or even a stranger when you stand in line at the grocery store or for lunch today. Kids are being diagnosed with cancer, too, and the treatment available to children is abysmal compared to that afforded adults and worse yet, we are losing children unnecessarily to the beast we call cancer.
Childhood cancer Awareness Fact of the Day: I mentioned yesterday and many have known that Cannon was diagnosed as Stage 4. We get a lot of private messages and questions about this and what it means, and today I would like to use neuroblastoma as an example to try to answer these questions. Most people are aware of the staging system in cancer, having experienced it themselves or having had a family member or close friend diagnosed with a “stage” of cancer. We all know threes and fours are not good. What about in children's cancers and specifically neuroblastoma? The treatment a child receives for neuroblastoma is dependent on placement in a risk group. Risk is determined by age, tumor characteristics (pathology and genetics), and stage --- the extent to which the disease has spread.
Disease stage in neuroblastoma is determined according to the International Neuroblastoma Staging System (INSS), developed in 1988:
§ Stage 1 – 21% of diagnosed patients
The tumor is confined to one area of origin and can be completely removed through surgery. Although microscopic residual disease may remain after surgery, identifiable lymph nodes on both sides of the body are negative for NB.
§ Stage 2 - 15% of diagnosed patients
2A - The tumor is confined to one area but because of size, location, or proximity to other organs, cannot be completely removed. Identifiable lymph nodes on both sides of the body are negative for NB. 2B - The tumor is confined to one area and may or may not be completely removed. Identifiable lymph nodes on the side of the body where the tumor is located are positive for NB, but lymph nodes on the opposite side of the body are negative for NB.
§ Stage 3 – 17% of diagnosed patients
The tumor crosses the midline of the body (defined as the spine) and may or may not have spread to nearby lymph nodes; OR the tumor is confined to one area of the body with disease in lymph nodes on the other side of the body; OR the tumor is located crosses the midline with disease in lymph nodes on both sides of the body
§ Stage 4 – 41% of diagnosed patients
Neuroblastoma is found in distant lymph nodes, bone marrow, bone, liver, or other organs (except in the special circumstances of Stage 4S, explained below). Indication of presence of NB cells by immunocytology alone (no visible tumor cells in bone marrow biopsy or aspirate) does not classify a child as stage 4.10
§ Stage 4S – 6% of diagnosed patients
Usually in infants, the tumor is confined to one area of the body, like a Stage 1 or 2 tumor, but disease has spread to only the liver, skin, or less than 10 percent of the bone marrow (no bone lesions).
Source: Handbook for Parents of Children with Neuroblastoma, Children’s Neuroblastoma Cancer Foundation, www.cncfhope.org, revised 5/31/11.
I also mentioned in a prior post that most neuroblastoma in children is diagnosed as Stage 4. Why? Because often the diagnosis is finally made only after a long, trying period. Children may have a variety of symptoms such as irritability and low-grade fever that mimic common illnesses and viruses, or diseases such as juvenile rheumatoid arthritis that cause joint pain. Symptoms depend on where the tumor originates and if it has spread. For example, children with a tumor in the abdomen may have a swollen abdomen, constipation, vomiting, or diarrhea. A child with a tumor on the spine may stop crawling or walking, or may have weakness or paralysis. A tumor in the chest may cause breathing difficulties. A child whose disease has spread to bones may have black eyes, bone pain, bruises, fever, paleness, and may limp or stop crawling or walking. Cannon had low grade fever for several months prior to diagnosis, but it was believed to be related to teething and new teeth cutting in. It was only when he started to limp that we took him to an orthopaedic physician who ordered an MRI that detected the metastasized mass behind his left knee.
And from there the hell begins. 40 times a day or more it happens to parents around this country, and once every 3 minutes to a family in the world. “Your child has cancer”. And the statistics say 80% of children survive cancer diagnosis. Not really... read my earlier posts on this subject. Doesn’t matter...1 out of 5, or 1 out of 4; does it matter? Kids are suffering from the painful treatment and dying from both the harshness of the treatment and the disease itself, and it's not getting much better. Help us create outrage to these truths.
Please help Melissa and me, CKc and all the parents of children with cancer and all those advocating for these kids. Help us increase awareness so that someday, someday cancer in children will be no more. Thank you.