It is gray outside this September morning and I am driving to my exercise class that begins at 6 a.m.
As I pull up to a non-Jewish neighborhood far from home, parking my car on a side street, I look up from where I am concentrating on maneuvering into the space between two cars and see ahead of me an entire street of trees ribboned in gold.
I catch my breath, startled by the tears trickling down my face on this random morning.
I watch the gold ribbons flutter in the wind, each tied in broad, elegant bows around the great sturdy stomachs of the grand trees that line the two sides of the street, my eyes blurring with the tears that have caught me unaware.
It is ironic, I think, how seven years ago I would not have known what these ribbons mean. I think how beautiful it is that somebody in this neighborhood has thought it important to announce to the world that they support the message behind the gold. I think, with a sad aching feeling, that there is no one in my own neighborhood who has any idea how meaningful these gold ribbons are to me, and how moved I would be if someone from my own community had thought to remember me in gold.
September is National Childhood Cancer Awareness Month.
I am a parent of a child with a pediatric brain tumor.
Here are the statistics:
Every year 13,500 children will be diagnosed with a pediatric cancer. That’s about 40 children a day. Eight of them will die.
About 280 children will be diagnosed yearly with ependymoma.
One year my son joined that statistic.
Pediatric cancer is the number one fatal disease for children, yet of the thirty billion dollar budget granted the National Institute of Health, National Cancer gets 4.9 billion, and childhood cancer gets 200 million – only 4% of the funds available.
In the last twenty years only two new drugs have been developed specifically for children’s cancers; the rest were designed for adults. In thirty years, no new treatment has been discovered for specific types of brain tumors whose diagnosis carries an immediate death sentence.
More children die each year of cancer than adults died in the Twin Towers on 9/11.
If the average expected life span of an American citizen is 77 years, and the average age of death for a child diagnosed with cancer is eight, then cancer has robbed that child of 69 years.
Of the 35,000 children currently in treatment, 25% will eventually die of their cancer. Of the 75% who survive, the treatments themselves will often cause horrible impairments like brain damage, secondary cancers, infertility, physical and learning disabilities, blindness, deafness, and/or endocrine issues such as stunted growth.
So, in order to change these statistics, we need better treatment options, we need new treatment options. And gold is the color that advocacy groups have designated to raise awareness in order to get more money for funding for research that will find the cure and the answers as to why cancer happens at all.
I am part of an online group for parents with children with pediatric brain tumors, and what has struck me over the years is how the parents in my group, secular Jews and non-Jews, who choose to make a difference as a result of their experiences with cancer, are choosing to create organizations to fund cancer research.
This is in sharp contrast to frum Jews who tend to make a difference in creating organizations that directly help those coping with cancer.
I am often a recipient of those chesed organizations in the form of food, bikur cholim apartments, insurance advocacy, rides to and from the hospitals, and presents for my child. There are a host of other incredible services that other parents and families benefit from as well. And my gratefulness knows no bounds. But I don’t think I have come across any Orthodox organization that addresses the need to advocate for research funding or to actually raise money to fund research.
