Fewer goodbyes to childhood cancer, or “My sunshine, my David”
I love many people, and I love many people greatly, but there is no one I love more intensely or completely than one little boy named David. If you read my blog, you have come to know David as “Li’l D.” He is my son, and—although I once dreaded the prospect of parenthood—my life has been a million times brighter since he entered it three years ago.
For this one blog, I cannot call David “Li’l D.” Because, you see, this is a post about the loss of children, and “the loss of children” translates in my mind to “the loss of David.” Not “Li’l D.” David.
David: my exuberant, bossy, compassionate chatterbox of a son. My David.
Last September, I learned that September is Childhood Cancer Awareness Month. I ignored most of the posts I saw on the matter, because paying attention to them meant paying attention to the fact my own son could someday be among them.
I will cross that bridge if I get there, I told myself.
It was January before I steeled myself to read Donna’s Cancer Story, a series documenting one brave, beautiful girl’s battle with cancer. As I read it and for days afterward, I bawled, I cursed the universe, and ultimately held David tighter as I imagined what it would be like to say goodbye to him having barely just said “hello, my sunshine.”
As this September rolled around, I thought about what it would mean to me. I knew I’d read Donna’s Cancer Story again, and share it for those like me who couldn’t bear the thought of reading it the first time around.
I didn’t know I’d find myself also reading Aidan’s Cancer Story, and compelled by the memory of both Donna Quirke Hornik and Aidan Manning to look more deeply into why pediatric cancer awareness is important not only on a personal, empathy-building level but on an extremely practical one.
In Aidan’s Cancer Story #1: Going for the Gold, Aidan’s mom wrote:
Cancer is the number one killer of children by disease. Yet, inexplicably, research for pediatric cancer remains grossly underfunded. In fact, all 12 major groups of pediatric cancers COMBINED receive less than 4% of the federal budget’s $4.6 billion for the National Cancer Institute.
This paragraph stuck with me as I read through the remainder of Aidan’s story posted so far. After I’d finished reading those eight posts, I began digging around on funding for pediatric cancer research.
I’d previously heard that the American Cancer Society donates only about one cent per dollar received toward childhood cancer research. Searching for easily expressed data on this yielded limited results, but this screen shot is illuminating. By April 2010, the ACS had issued grants of roughly $12 million “related to” pediatric cancer. This carefully crafted “related to” language immediately flags that only a portion of that was granted to direct pediatric cancer research; the remainder merely encompasses it.
Still, giving the ACS the benefit of the doubt, let’s call this $12 million dollars “for” pediatric cancer research. With a fiscal year running September through August annually, that’s $12 million granted over the course of eight months, September through April. Assuming like granting for the remainder of the year, that’s a total of $18 million issued by the ACS on funding “for” pediatric cancer research in ACS fiscal year 2010.
Add another $50 million to that, and you’ve got the amount spent by ACS on administrative expenses over the same period. Add another $130 million to that, and you’ve got the amount the ACS spent on fundraising expenses.
That’s right. An estimated $18 million on pediatric cancer research versus $201,051,202 spent on fundraising.
That there’s money doing some mighty loud talking for the ACS.
Moving on to the National Cancer Institute, I reviewed its Fact Book for 2011, which describes in several charts how much money was allotted for research by cancer type. Pediatric cancer doesn’t appear in any of the charts. In fact, searching for “pediatric” and “child” returns only results for title and organization names. A separate document estimated fiscal year 2010 expenditures at $196 million, or 4% of its $5.1 billion budget, which excludes another $1.3 billion received by it via the American Recovery and Reinvestment Act.
I struggled with the totality of the ACS/NCI picture painted for me. If children are indeed the earth’s most precious resource, why are so few monetary resources set aside for their care and tending to? The answer is probably complex. kidsvcancer.org suggests that underfunding is due to problems getting research proposals reviewed:
One reason federal funding for pediatric cancer research is low is the structural impairments in peer review process, the process by which research proposals are evaluated. Unexamined biases, and lack of accommodations for the inherent limitations of pediatric cancer research has resulted in chronic underfunding of pediatric cancer researchers.
For a million reasons after the night’s research, I am uncomfortable saying this could possibly be the funding problem’s sole source. I am deeply troubled by the prospect that part of the answer lies in the fact that kids just don’t have checkbooks.
Regardless of the reason cancer’s apparent big hitters in the United States apportion little of their resources to pediatric cancer research, it is a troubling fact that they do. This is so despite the fact that cancer is the number one cause of child death by disease in the United States.
The number one cause. If that isn’t a loud enough call to action, I dismay that there could be a call loud enough.
And yet, there is much more than dismay to note here. There are organizations out there dedicated to eliminating pediatric cancer and assisting those living with it now: St. Baldrick’s, Alex’s Lemonade Stands, and CureSearch, for example. (Please find more at KidsCancerFight.)
When I am next able to donate, it will include at least one of these organizations. My son may not be facing cancer now, but he might face it someday. One of his cousins or friends might face it. Many someones’ sons are fighting it right now. Many someones’ daughters. Many are no longer able to fight.
My son is my life’s greatest joy. When David is free to be healthy and happy, my life is good.
As I listen to David’s gentle snores from his bedroom, I hope he is healthy for many decades to come. I hope the same for all parents, everywhere. But even more importantly, I am determined to do my part not only to hope but to support—in words and deeds—organizations committed to childhood cancer research and eradication.
There is much that is precious to me in this life, but none is more precious to me than my sweet Li’l D. As I think of Donna and Aidan, I am grateful for the awareness they and their amazing parents have brought me: of their lives, of childhood cancer, of compassion, of lifesaving childhood cancer research currently lacking.
And I think of my son. I stand by those who stood with Donna and Aidan, and those who would stand by David.
My David. My sunshine.