How the Childhood Cancer Community Gets It Wrong

It’s happening again.  The childhood cancer community, a group I am both honored and sorrowed to call myself a part of, is getting it wrong again in a very public way. National news outlets are now reporting on what I have seen on my private Facebook feed almost immediately after the announcement — sour grapes over Caitlyn Jenner receiving the ESPY Arthur Ashe Award for Courage rather than our own community’s Lauren Hill.

For those of you who don’t know (those of us in the childhood cancer community require no introduction), Lauren Hill was a 19 year old college basketball player at Ohio’s Mount St. Joseph who died of one of the most vicious forms of pediatric brain tumors, DIPG, on April 10, 2015.  Diagnosed shortly after her 18th birthday, Lauren inspired thousands with her courage and selfless focus on the importance of research for other children, knowing full well she herself would not benefit, as DIPG remains a terminal diagnosis. Before her death, Lauren directly inspired over $1.5 million in donations, and that number has risen significantly after her death.

Lauren Hill and Caitlyn Jenner.  Does one of these women have the corner on courage?
Lauren Hill and Caitlyn Jenner. Does one of these women hold the corner on courage?

There is absolutely no question that Ms. Hill demonstrated extraordinary courage in how she lived with cancer.  She represented the best of humanity at a time of tragic loss for herself, her family, and her loved ones.  Her selflessness inspired those within our community and a national audience to better understand the need for research and learn how severely underfunded pediatric cancers are within the larger world of cancer research.  I salute her and remain awed by her grace.

And while this may be presumptuous to say, every indication is that Lauren would be ashamed of the childhood cancer community’s response to the ESPY award announcement.  Like petulant children, I have seen countless activists bemoan Jenner’s selection for a courage award, demanding that Lauren be recognized for her clear superiority over someone who undergoes elective surgery.  The rhetoric has been shameful, though most of it is couched in politically correct terms so as to ensure everyone knows that the childhood cancer community fully supports the struggles of the transgender community.  Those disclaimers and assurances do little to demonstrate empathy for a condition that results in up to 46% of transgender or gender non-conforming individuals  attempting suicide.

Please.  And enough.

This is not the first time the childhood cancer community has created a public ruckus in response to something they disapprove of.  Last summer it was the ice bucket challenge for ALS.  For weeks I read blogs and saw angry status updates from Cancer Parents about how ALS was getting the support and recognition that our children with cancer should have.  Like with Jenner, the unspoken suggestion is that childhood cancer is worse — worse than ALS, worse that gender confusion, worse than any cause or effort that eclipses our own.

It is shameful to me, and embarrassing.  The childhood cancer community is acting in ways that, I hope, we as parents would discourage in our own children.  If siblings were squabbling about not getting enough of this or that or things within the family not being perfectly equitable, our parental instinct would be to shut that s&%$ down.  We can recognize that behavior as petty and immature and demand it stop.  And yet, somehow, we cannot see it within the larger childhood cancer community and how we harm our cause by engaging in it ourselves.

It is time to stop the nonsense, the petty behaviors, the entitlement.

For that to happen, though, some hard truths need to be addressed.  The childhood cancer community has no singular focus to rally around.  There are many charities doing outstanding work on behalf of our children.  I am honored to know some of the major players in the arena and, like with Lauren Hill, stand in awe of their efforts.

But not everything is rosey.  As the mother of a daughter who died of an aggressive brain tumor, I have had other Cancer Parents ask why our family supports the work of St. Baldrick’s, given that their efforts are not exclusive to pediatric brain tumors.  The suggestion is that the $365K+ our events have raised for research is somehow being misappropriated because it is not specific to childhood brain tumors.  And, yes, people actually say this to me.  The truth, from the mouth of our own beloved Dr. Stew, Donna’s oncologist and a renowned researcher, is that were we to donate $50K for research with the requirement that it be specific to Donna’s type of cancer, papillary meningioma, he would have to refuse it, as Donna’s cancer is not even being researched.  How about them apples?

Perhaps the hardest truth of all is that our children with cancer have become symbols for folks wanting to feel connected to the next feel good story of the year.  This month a documentary about Bat Kid will be released.  You remember Bat Kid, right? Huge swaths of San Francisco shut down in November 2013 to accommodate the wish of young Miles Scott, a beautiful little boy diagnosed with leukemia, to the delight of an international audience who monitored the day via almost half a million tweets covering the events.  The documentary is described as “humorous and touching.”  Ouch.

1 in 5 children diagnosed with cancer will die of their disease, 1 in 2 children diagnosed with a brain tumor will die, and yet documentaries are being released that focus on the “humorous and touching” aspect of pediatric cancer.  We allow that.  Hell, I think our childhood cancer community, to a certain degree, encourages that.

I have said it before and I will keep saying it.  We need to center and focus on one thing:  research.  R-E-S-E-A-R-C-H.  Our government is not helping, the pharmaceutical companies are clear that there is no profit in devoting resources to childhood cancer, so they will not help.  We must do it ourselves, as no one else understands.  But we do not help our cause or our children by public displays of entitled, petty behaviors that cast stones on the hard work of other diseases and disabilities.

As the mother of a child who died of cancer, I understand the pain and frustration we all feel.  We shout and we shout and we shout and our efforts don’t always have the impact we wish they did.  This public nonsense, I realize, comes out of both exasperation and fear that our children will be forgotten.  I live with that very real fear every day, so I understand, but it is no excuse.

We must stop the petty, immature, entitled behavior and remain focused on research. Period.

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