Home > Charity, Dreams, Family, Health, Love, Parenting, Reflections, Youth > Fewer goodbyes to childhood cancer, or “My sunshine, my David”

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.

love

With my mom, a few months before she died

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’sAlex’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.

Donna

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.

  1. September 9, 2012 at 12:15 am

    Oh, my. My Momcologist heart is swelling. Thank you for leaning in and witnessing. Thank you for taking the time and offering a piece of your heart to my childhood cancer community and the public at large.

    Love, love, love……. in honor, in memory, in defense.

    • September 9, 2012 at 8:02 am

      Thank you, Mindi, for reading this and helping me start the morning with my own swelling heart. So much love.

  2. September 9, 2012 at 2:24 am

    So many cancer types get funding because they are somehow ‘sexy’ or trendy. I thought long and hard about it and decided cancer is cancer is cancer. I now give money each month to the Australian Cancer Council which funds research and support in the areas of most need.

    • September 9, 2012 at 8:09 am

      One of the shocking things to me was how much money is spent on breast cancer research. It’s not that I find anything implicitly wrong with that, nor any other cancer research, but the inequity was appalling when expressed as follows by the American Childhood Cancer Organization:

      To put this figure in perspective, the NCI allocated $572.4 million on breast cancer research in 2007. Other NIH Institutes funded breast cancer research at a level of $132.6 million in the same year; and the Department of Defense, which also supports breast cancer research, allocated an additional $138 million. As a comparison, breast cancer with its overall 5 year survival rate of close to 90% received $843 million in Federal research funding in 2007. This was in addition to the funds raised by breast cancer organizations through their pink ribbon campaigns and private donations. It is estimated that the success of those initiatives raises approximately $256 million in the combined assets of the top four breast cancer organizations. The success of the pink ribbon campaign and its resulting funding for breast cancer research has resulted in an increase in the five year survival rate of that patient population. Their strength as advocates has resulted in a strong position for both federal and private research funding.

      As individuals and organizations supporting our nation’s children and adolescents with cancer we too can take a strong stance for our cause with both federal and private research funding. Breast cancer is the sixth most common cause of death by disease of women in America (behind heart disease, stroke, lung cancer, respiratory disease and Alzheimer’s). In comparison, cancer is the number one cause of death by disease of America’s children. In terms of person years life lost (PYLL), the average age at diagnosis of breast cancer is 61, with a calculated 16 PYLL. In contrast, the average age that a child is diagnosed with cancer is 10. This calculates to 67 PYLL. Sixty seven years of life lost when a child dies from cancer.

      There are many excellent cancer research organizations that will do great things with the funds they receive. I hope that, whichever ones people choose to fund, they will do so–like you–with an understanding of how those funds will be used. I didn’t always used to do that, but now it is essential to me.

  3. September 9, 2012 at 5:11 am

    It’s possible the funding problem could be the perception that cancer is a disease only older people get. Or one of those situations where people would rather it not be an issue so they pretend it just doesn’t exist. Cancer is a difficult disease to tackle all around. I was constantly surprised both how much and how little we know about it when we talked about it in my classes. There seem sto be a perception that cancer is one disease, when really each type of cancer is quite different, although it seems that they have similar causes as at its heart cancer is essentially a genetic disease (not as in it runs in families, although it can, but that it’s caused by disturbances of certain genes). Cancer in childrem could well have unique markers or causes that could teach us much about other cancers and help us to treat them. Science works best when all avenues are considered.

    Maybe if I go to grad school (which is possible given the dismal job situation) I’ll do cancer research of some sort. That or something with green energy.

    • September 9, 2012 at 8:17 am

      I really do think that wishful thinking plays a huge role in this in an almost ostrich-like way: “If I close my eyes to it, it can’t hurt me or those I love.” That was how it was for me a year ago today. The thought of something like that was so devastating, I moved along to other things. Now I see that I did so at a disservice to myself–to my own understanding about the world and both the suffering and joys of others who share it with me–and to others who suffer now. Of course, I continue to understand how hard it is to open up to something like this and understand how little control we have over some parts of what’s to come.

      That’s part of why I keep thinking about this, and posting about it. I think people see stories like Donna’s and Aidan’s as only profoundly horrible, sad things. There is immense sadness in them, but there is also hope. By listening to their stories and taking actions inspired by the love from doing so, we have a chance to change the future. That is an amazing gift, and that is why I keep trying to emphasize to folks I know that my life has been better for knowing these stories. Brighter. The sadness must also be embraced to obtain that overwhelming love.

      I’ve been thinking about your job search, by the way! I’m sorry it’s going so dismally, but maybe . . . maybe grad school will lead you amazing places in the future. It’s a heartening thought, although I know (from personal experience and intellectually!) that heartening thoughts don’t actually pay the bills. :)

      • September 9, 2012 at 9:04 pm

        Exactly! If we are to understand the world around us, we have to look at it for what it is. Suffering is a part of this world, like it or not. But that doesn’t mean that bliss cannot be there also :)

        Thanks! Yeah the job search is going badly. Very badly. My degree hasn’t qualified me for anything, so far, haha. I keep thinking about grad school, but I doubt I’ll do it. Mostly I’m just sick of school, haha. Still, it would be cool to become an honest-to-God scientist :D

  4. September 9, 2012 at 7:35 am

    I think I know what the problem is. People do not want to think about kids having cancer. They don’t want to look at sick kids. They don’t want to have to think about it or have it enter their realm of possibilities. A lot of people pay it face but aren’t willing to go past that. My daughter had a brain tumor and my family could mostly care less. Most of my “friends” could care less. As long as it’s not their kid, they don’t care. God help us all.

    • September 9, 2012 at 8:29 am

      I think you’re right that they don’t want to “have it enter their realm of possibilities,” Ellen. I know it was fear that kept me from reading Donna’s story for several months. I felt as if, like an ostrich, I could keep myself safe from it by hiding from it.

      Fear is a crummy reason for doing or not doing things. Embracing the sadness that would come from reading Donna’s story also opened my heart to so many things I could never have seen had I kept my eyes closed. It’s hard to explain this to folks, but I keep trying.

      I don’t think it’s that they don’t care. I think it’s that it’s terrifying to confront how little control we have . . . but it’s liberating, too, once that limitation is embraced, and it enables actions borne not of fear but love.

      I am so sorry for the eyes closed around you. I deeply wish I could say or do more than that.

  5. Val
    September 9, 2012 at 8:23 am

    I have no children and I’m not in America, but if I did and if I were, I’d be fighting this along with you. I’ve retweeted this for you. Hugs.

  6. Linda Barry
    September 9, 2012 at 2:09 pm

    I have stopped donateing to breast cancer. They have the loudest voices and an abundance of men will gladly open their wallets and donate to breast cancer research. It’s all about the boobs. No one is interested in a walk for ovarian cancer, pediatric cancer, or brain cancer.
    It’s not sexy. Our yearly rodeo has a ” Real Men Wear Pink” day and all the cowboys wear pink proudly. Need I say more.

    • September 12, 2012 at 8:35 pm

      I so hear you. I’m trying not to get grumpy every time I see pink ribbons now, but I’m frustrated by what they represent about what feels like a very, very unfortunate distribution of cancer research funds in light of incidence, survival rates and such. That’s not to say that I begrudge improvements in any fight against cancer, but the more I understand . . . the more agitated I am. It is my goal that with more time, more research and more chance to reflect, I’ll be better able to translate my agitation to change.

  7. John Erickson
    September 9, 2012 at 3:51 pm

    Whatever cause you support, it’s best to get your money to the closest possible organisation. When I was working in the far northern suburbs of Chicago, we had a yearly United Way drive. Some heavy flooding had hit my home county (heck, it had hit two blocks from my folks’ house), and I was in a position to give a fairly good amount. Well, come to find out, since our offices were in Lake County, that’s where the money went – not to DuPage county, where I lived and where the flood victims were. I fought tooth and nail up both my company’s chain of command and that of United Way, to no avail.
    So I stiffed United Way that year. Yeah, there were people in Lake County that needed some help, but I’d rather give DIRECTLY to those that need it (in the flooding case, a fund set up by a local bank) than throw money at an organisation that uses most of it for self-sustainment.
    As with all things, caveat emptor. Sadly, even in charity.

    • September 12, 2012 at 8:42 pm

      Ai ai ai! I am so sad to hear this about United Way! I had positive experiences with them back in college, but I’ve not returned to them since.

      That experience reminds me–somewhat tangentially–of things I read about right after the Japanese tsunami. After all my reading, I didn’t feel comfortable recommending any particular cause for donations, but did advise folks to choose donations carefully. I urged folks then to not earmark donations for specific causes, if donating to large organizations, since that often tends to leave huge amounts of funds undistributed that could’ve gone to other worthy causes.

      But more and more since, I’ve come to see that larger organizations might not be the best ones. There are obviously going to be exceptions, but be they small or be they large, I will research fastidiously before donating . . . or asking friends to donate on my behalf. I wish I had looked a little more closely two years ago.

      Still, it felt good to do something–anything at all–back when I so fiercely regretted how little I could do six months prior.

  8. September 9, 2012 at 5:16 pm

    I have a cancer kid..Neuroblastoma,stage IV,high risk..We were told that he was so covered with cancer that he would n ot live for 2 weeks.When we asked if we needed to go somewhere else for treatment,we were told that there had not been a new drug in 19 years….can you believe…the pain that we felt from that was just unbelievable….that was January 18,2008….4 1/2 years old….he was too “old” for this cancer.
    He is still alive but it is not due to the treatment…6 of the hardest rounds of chemo given to a child,a life htreatning round of chemo,stem cell transplant,radiation and Acutane..and 6 months of a study drug that is now on the roadmap for Neuroblastoma.
    These drugs usually kill the kids before the cancer can….My son has hearingaides and several other problems but we can live with those.
    Now we have to watch for this cancer,other cancers,heart attack..and so many other major side effects from chemo..
    If my son lives past teenage years we will so very blessed….If he gets old enough to get married,he will not be able to ever father a child….
    My son is 9 years old and I sit every night and listen to him breathe because I understand what a gift that God has given us…..

    • September 10, 2012 at 8:30 pm

      Your son”s story is so heart-rending. I’m praying for his continued health.

    • September 12, 2012 at 8:47 pm

      It’s heartbreaking to read everything your son has endured in his short life, but your final words choke me fill me with the wonder of love nevertheless: My son is 9 years old and I sit every night and listen to him breathe because I understand what a gift that God has given us….. Do you mind if I share this comment on my FB page?

      I am so thankful for you reading this post and sharing your experiences with your son, Dot. I wish you and yours peace (when it can be found) and love (always) in the days ahead.

  9. September 9, 2012 at 7:34 pm

    My nephew Elias is a cancer survivor. He was diagnosed with Neuroblastoma before his second birthday. Memorial Sloan-Kettering Hospital saved his life. He’s ten now. As Dot writes above, the treatment is difficult and there are lifelong side effects. Like her son, my nephew has a hearing loss and other chemo side effects. And he is still considered high risk for recurrence. Alex’s Lemonade Stand is a wonderful place for a donation. I would also recommend Fred’s Team. This organization, associated with Sloan-Kettering, raises funds by running the New York Marathon. To date, Fred’s Team has raised $46 million. Every dollar goes directly to Sloan-Kettering for cancer research – especially childhood cancer.
    I’ve attached a link below to my brother’s page (he’s running again this year). Even if you can’t give, it is certainly worth the click just to see a photo of my sweet nephew, Elias.

    http://mskcc.convio.net/site/TR?type=fr_personal&fr_id=1730&px=1039281&bpg=list&pg=personal

    • September 12, 2012 at 9:04 pm

      This is some wonderful information. Thank you! Thank you, too, for sharing that link to Elias, and a little of the detail about the indirect impacts to him. I can see from site stats that people are reading these comments and clicking on links, which is a heartening thing indeed. Thank you again!

      • September 13, 2012 at 5:19 am

        And thank you for your post and allowing me to add my own personal appeal.

  10. September 10, 2012 at 4:20 am

    Thank you Deb. As you do so often you lift our spirit and open our eyes. I am always careful with my donations, demand they be used for what they are intended. For years I have given monthly to one of my favorites, St Judes which is focused on Children, both research and care. Though Cancer isn’t their only focus it is one of their primary. I love that you have provided additional links, I will go check them out.

    • September 12, 2012 at 9:12 pm

      I love the care and thought behind this comment. I wish I had your skill for saying much in only a few words. I’ve seen a little about St. Jude’s, but I don’t believe I’ve ever donated to them yet. I’ll have to look into them further as 2013 nears, and another (small but hopefully helpful) round of donations with it.

  11. September 10, 2012 at 6:24 am

    Thanks for educating me, Deb. I had no idea cancer is the number one child killer. It takes a great deal of courage to even read stories about children with cancer. Head-in-the-sand syndrome. If I don’t read about it, I won’t have to face the fact that I should try in my small way to do something about it. I didn’t know either how underfunded this research is. I appreciate all the research you have done and the links you’ve provided. Your courage inspires me.

    • September 12, 2012 at 9:23 pm

      I didn’t know that, either, until just this last weekend. I only meant to write a short post linking up Aidan’s story, but then I got to thinking about why I was linking it. Thinking about that made me start poking around . . . and then, well, this.

      I am glad I poked around. I know in a few months or years I’ll look at this and think, “Oh, geez, I knew nothing then,” but I’m glad to have taken the plunge and started here with the information I do have. Rather than waiting to cross the bridge if/when I get there, I’d love no one to ever have to get there again.

      Reading Donna’s Cancer Story was hard. For a couple of months, I kept fearing what would happen if Li’l D were to experience the same thing. Eventually, somehow, fear was replaced with faith that in such a case, my sunshine and me will be abundantly supported. We don’t get to choose all of what happens to us, but when we’re lucky, we don’t have to go it alone.

      Thank you so much for reading and for your thoughtful words, Pat. Much love.

  12. September 14, 2012 at 8:08 am

    May your sunshine always burn bright…

  13. October 12, 2012 at 10:54 am

    I am so pleased to have stumbled upon this post. I posted an update in my blog everyday for the month of September that somehow related to Childhood Cancer Awareness Month and I do believe that I helped raise awareness even if in just a small way. Friends and family shared my posts on FB and I received a lot of encouraging comments from my readers, but this is the first time I have come across a post like this, from a Mom that does not have a child with cancer. Your words and your acknowledgment that childhood cancer exists and that no one is immune to it, I am grateful for. The information that you shared with respect to fundraising and the very small amount of monies raised that goes to childhood cancer research is information that needs to be put out there. Listing the foundations that are dedicated to childhood cancer will hopefully inspire people to make better decisions about their fundraising dollars.

    I am a “cancer mom”. Our son, Aleksei, was diagnosed with PNET Ewing’s Sarcoma of the spine in January of 2011. After surgery chemo and radiation which was all complete in October, 2011, he showed no evidence of disease or “NED”. Since then he has had to go every 3 months for an MRI of his spine and a chest x-ray as this type of cancer is very well known to come back and besides the primary tumour site often times tumours are found in the lungs.

    Since last October his 3 month scans have continued to show NED. He had his last scans a few days ago and as I sit here waiting to hear the results, wanting the phone to ring, but not really wanting the phone to ring, as I pass my days with a general all over feeling of numbness which contributes to the inability my brain seems to have of not being able to think of something else for me to do but worry, I found this post and it made me feel hopeful.

    I thank you for that.

  1. September 13, 2012 at 11:50 am
  2. September 13, 2012 at 6:35 pm
  3. September 23, 2012 at 11:40 am
  4. September 24, 2012 at 10:01 pm
  5. March 20, 2013 at 7:17 pm
  6. October 1, 2014 at 8:40 pm

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