Category: Pediatric Cancer

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An Open Letter to WGN’s Mark Suppelsa

You aired what you referred to as an “investigative” report on WGN last night regarding the misuse of State funds from the income tax check off boxes.  We use the quotes because it is hard to think of matters that occurred two years ago and were previously reported on as investigative journalism.

As two moms who are the most involved with the creation and development of the Illinois Childhood Cancer Research Fund, new to the Schedule G check off funds as of tax year 2012, we find your report seriously lacking and potentially gravely detrimental to Illinois children with cancer, not to mention the other worthy causes represented on Schedule G that will also suffer at the hands of your one sided reporting.

Before we address some issues that your report raised, let us just be clear that we feel our cause of helping to generate greatly needed funds for pediatric cancer research has been thrown under the bus of Illinois partisan politics, and that you were the willing tool that accomplished the dirty work of Illinois politicians.  To be caught in the cross hairs of elected officials and their political games saddens us immensely.

For the record, the practice of sweeping and “borrowing” of money from these charitable funds is despicable, deceitful, and a complete breach of trust of the Illinois tax payer.  Our elected officials should be ashamed of themselves.  And trust us that as we lobbied for a spot on the 2012 tax form this matter and the history of deceit and misappropriation was both considered and discussed.

Despite that, we moved forward, successfully securing a much sought after spot on the Illinois 2012 tax form.  This was significant work and took a lot of effort, especially considering we are not a part of the Springfield system, but two Chicago moms with the misfortune of having a child diagnosed with cancer.  All we asked of our legislators in our appeal was the opportunity to reach out to Illinois tax payers and allow them to help Illinois children with cancer by donating a dollar or more of their expected tax refund.

This leads us to our disputed points in your story:

  • You repeatedly referred to Illinois charities in your report.  The Illinois Childhood Cancer Research Fund, along with most other check boxes, are not free standing charities.  The Illinois Childhood Cancer Research Fund, as stated, is a group of committed moms who saw a need and found a creative way to reach out to Illinois tax payers.
  • You stated that you “learned” the funds would not even go directly to the charities themselves, and instead be subjected to the “red tape of Springfield”, implying this was misleading.  NO, they will not, nor would they ever have.  We petitioned the State of Illinois to establish a fund where Illinois scientists could petition for grant money to fund science directly related to pediatric cancer.  We knew every step of the way that all monies raised would stay in State accounts until qualifying research studies applied and were granted funds.  When your colleague Dina Blair did a report on our efforts last month, she clearly stated this fact.   A true investigative reporter would know that, and not suggested otherwise.
  • Your report, in a very confusing manner, lumps the dozen or so charitable funds in with “700 or so” other Illinois funds like the gas tax and doctor fees.  Charitable causes that qualify to be represented on the Illinois income tax form have no relationship whatsoever to those separate funds and taxes.
  • Your report stated clearly that over $14 million has been donated by Illinois tax payers for military families.  In 2010 and 2011, approximately $400K of those funds were misappropriated by the Illinois House and Senate.  That practice has not continued, yet your story has the power to cripple donations for Illinois military families in the 2012 tax year.  If a minimum of $100K is not donated on an annual basis, these funds vanish, no longer to appear on the following year’s tax form.  Does putting those counted upon funds raised for military families in jeopardy make you feel like you’ve done a good job?  The real story, a true “investigative” report, would have addressed what has occurred since 2011, namely, the cleaning up of this reprehensible practice.
  • Why was not a single representative from any of the charitable causes interviewed?  Not a single one.  These are causes and campaigns that are easily identified with a Google search.  We believe it is an extremely relevant POV to seek.  How DOES the Illinois Military Family Fund feel about their misappropriations in 2010 and 2011?  Why do they continue to petition the State on an annual basis for that very sought out spot on the tax form?  This, perhaps, is the greatest flaw in your partisan story.  If you are a true investigator, why do you not seek out those most affected by the actions of the Illinois House and Senate?
  • To the best of our knowledge, NO Illinois charitable cause or campaign has opted out of this check off box donation program when the sweeping practice was uncovered in 2011.  The reason being is that it is an effective way to access much needed funds for such worthy causes through the generosity of Illinois tax payers.  We are not government entities nor do we condone corrupt government practices.  These causes and campaigns are run by individuals working hard to make a difference in Illinois.

For this to have been a fair and balanced story, different than the partisan piece you aired last night, you needed to do your job.  But you didn’t, Mr. Suppelsa.  Instead, you jeopardized the many, many groups, causes, and individuals that benefit from these funds across the State of Illinois.  The true losers in this story are not Governor Quinn or Leader Madigan or even the Illinois tax payer.  Those that have the most to lose from your shoddy, biased journalism are children with cancer, Alzheimer’s patients, abused children, homeless individuals and families, military families, diabetes patients, breast cancer patients, and others that look to these charitable donations for support.  With a single six minute report, sensationalized to run at the opening of the newscast, you have put all of that in jeopardy.

We suggest a follow-up report, utilizing your investigative skills, to uncover the good that these funds have done over the years, the families and patients who have benefited from their existence, the scientific strides that have been made, the families that can now feed their children, the women surviving their breast cancer diagnosis, the military families that can support themselves through unemployment – that would be some good reporting, and tell a full and complete story.

 

Most sincerely,

 

Laura L. and Sheila Q.

Illinois Childhood Cancer Research Fund       

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Internet Hate: What You Don’t Know Might Hurt Me

Yesterday, I called “Uncle.”  I was done.  Over.  Wounded.  A tearful, salty mess on Valentine’s Day, when I thought I was long past those days.  It wasn’t my husband or long lost secret crush that brought me to that place, but strangers.  Yep, freaking strangers on the Internet.

I know, someone call the wahmbulance.  Mary Tyler Mom got her feelings hurt.  Boo to the hoo.

Truth is, I have been at the receiving end of some fairly hard core Internet hate for weeks now.  And for the record, I use the true definition of hate as it was intended, “intense and passionate dislike,” that results in malicious attempts to hurt or harm others.  Disagreement is not what I mean.  There are lots and lots of folks who disagree with me and my POV and that is always welcome.  Hate is irrational, disagreement is rational.  And welcome.

When a piece I wrote about adoption was featured on the Huffington Post last month, it attracted the attention of a particularly rabid subculture of haters.  Ones that I didn’t know even existed.  That was a wake up call.  And the hate was significant and brutal enough where I severed an agreement made with my editors over there to publish any future post I wrote about adoption.  That hurt, as I had fanciful hopes that our next child coming to us through adoption might be found through my writing, and The Huffington Post is a national platform where my words are exposed to a whole new set of eyes.

This week the hate has been much more contained, and with less volume, but no less personal and biting.  I dared write about my feelings related to the language used to describe sick and deceased children.  My feelings on my blog.  Well, 1,300 of you “liked” it, and man, did that feel validating, as many that I heard from were other parents of sick and deceased children who felt the same way.

What didn’t feel so good were the parents of sick and deceased children who did not feel the same way, and sadly, felt shamed and criticized by me.  Yeah, that was not my intent.  Ever.  What works for me does not work for everyone.  Of course, that is the case, but because I have a voice and use it and that voice is recognized, it carries some weight.  My intent with “Angels and Warriors” was to cast a bright light on words and language and to explain how the words and language most commonly used to describe my Donna never felt good or right or comforting.  End of story.

Honestly, I knew the “Angels and Warriors” post would cause a stir.  I did.  I knew it was a risk because I was removing a defense.  As a trained clinical social worker, I know that a cardinal rule of therapy is NOT to remove a defense if you have nothing to replace it.  My words did just that:  I trashed the defense that employs metaphors and romanticized imagery of angels and warriors to describe children with cancer.  I knew and accepted that risk going in, knowing that it would most likely hurt some parents I know and respect who take comfort with those metaphors and imagery.

Because I write so openly about Donna and pediatric cancer, I get a tremendous amount of support from those near and far.  Many, many of the kind notes I receive refer to Donna as an angel and me as a warrior.  Each time I read a note of support I feel grateful, but each time I am called a warrior or Donna is called an angel, it stings.  If I am a warrior, that means I am some sort of super hero that can handle each and every thing that comes my way.  If Donna is an angel, it means that she is flitting amongst the clouds, happy and peaceful as a clam.

Here is the truth.  I am a mom.  Right this very second I am sitting at my dining room table writing these words.  My dishwasher is humming in the next room, the clothes are moving through their own wash cycle downstairs.  My boy is playing with some Lego trains about ten feet away.  I am a mom.  No  more, no less.  I have no weapons, no shields, no super powers.  I am a mom with a keyboard.

Now I get that that can be a powerful thing.  Clearly, or neither of us would be here, right?  And I work hard to honor the power my words hold for folks.  I always employ respect.  I have grown that way.  I used to trash Gwyneth Paltrow for fun.  It’s not fun anymore, since I realized that when I trash Gwyneth in a clever and pithy way, others take it as a cue to call her a word used to describe female genitalia that I choose not to use.  Me making fun of her calling Chicago BBQ “meat heavy” was suddenly translating into a whole lot of heavy, ugly hate.  I stopped that.  I am happy I did so.

Me writing about the defenses we use to cope with pediatric cancer also lead to a whole lot of heavy, ugly hate.  My beautiful Donna and other children whose parents had commented to offer support were being exploited and called horrible, twisted things.

That is not okay.  And, yeah, dammit, I have feelings about that.

Apparently, having feelings about Internet hate that is being heaped and piled on me is a silly thing to do.  I am told time and time and time again to ignore the hate.  Move on.  Embrace my supporters.  Rise above.  Don’t let the haters win, blah, blah, blah.

That’s all fine and good.  Honestly, I wish I were a better, stronger writer that could do that.  Truth is, as already pointed out, I am a mom at her dining room table.  Not a warrior.  Not a super hero with deflective powers.  When people suggest I am a cold, thieving, narcissistic, heartless, self-righteous, baby stealing mother of worm food, yeah, guess what?  IT HURTS.

Don’t feed the beast, I am told.  Don’t respond to the hate, is the rule.  Here’s the deal.  I don’t make the rookie mistake of feeding the trolls.  I never responded once to the Huff Post hate, which is it’s own premium, top shelf brand of hate.  Not once.  I was, though, guilty of reading the hateful things about me.  Yep.  Guilty of that.  And made to feel stupid and weak because of that.  Just walk away, I was told.  Don’t read it.

I gots to say, I have a whole new level of empathy for kids bullied through social media.  It pulls you in, it does.  I am trying and learning, but my first time as a target of lots and lots and lots of hate, I failed.  I read every sick and twisted word about me.  Yep, I did.  And I kept it to myself for the most part.  Just me and the hate.  Opted not to write about it.  Opted not to send the amazing followers of this here blog and Facebook page to the site to defend me.  Nope.  Didn’t do any of that.  I am guilty of just reading it and carrying that shit around with me until it wears off.  My defense with Huff Post was to opt out of publishing anything that makes me or my family too vulnerable.  The sad truth is that I haven’t written a single thing about adoption since.  I am still feeling bruised and battered.

In my own safe place, here at MTM,  I ban and delete when I see offensive remarks,  as soon as I am near a device that will allow me to do that.  But if I am out with my boy and waiting for him to get out of school, and happen to check my comments in the car and see some hard core, hateful garbage written by a pathetic stranger taunting me?  Well, I have no way to deal with that on an iPhone.  This here MTM enterprise is me.  Just me.  There are no other admins, no one managing the fires at home.  Just me.  And as has been made patently clear, I lack the super hero street cred and yep, have pesky feelings that get hurt.

But damn if I will stop.  Writing is release and connection and probably the single healthiest thing I do for myself.  It hurts like freaking hell when people shit on that.  It does.  My go to response is to withdraw, hole up, and seek comfort in chocolate and a down comforter.  My haters would love that, wouldn’t they?  Such is the price I pay for exposing my vulnerabilities on this here Internet.

Cowardly haters love to say that when you put yourself out there, as I do, you best expect folks to have a response, and it won’t always be pretty.  Problem with that logic is that the same rationale is used to blame the victim in rape cases — “She asked for it,” “She was dressed provocatively,” “She was walking alone at night,” yada yada yada.  That is not acceptable.  I do not mean to diminish the pain and suffering of rape victims, nor to equate my hurt and bruised feelings with those of a rape victim, only to demonstrate how hate works in our culture and on the Internet.  People who violate others, either tangibly or intangibly, will always suggest they were provoked, that their hateful actions are justified.

By writing about my family’s wish to adopt and by writing about how I cope in my grief, I do not ask to be sliced and diced on the Internet.  But I am and it hurts.  My words cost me, expressing my opinions and POV cost me something.  The question, then, becomes, how much am I willing to pay?  How much am I willing to share?  How much am I willing to expose?  I hate that the onus is on me, but truth is truth.  The onus is on me.

I am figuring it out.  In the meantime, fuck you, haters.  Seriously, fuck you.

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Angels and Warriors and Cancer, Oh My

Having a child die before you is not easy.  Everyone can agree on that.  It is universal knowledge that parents are supposed to die first — sometimes too soon, but they still die first.  Then the kids.  Sadly, it doesn’t always work out that way.  Sometimes children die before their parents.  It sucks, but it happens.  Seven children in America will die of their cancer diagnosis every school day.

How we as parents of a dead child make sense of that will determine how we move forward.  My husband and I have opted for acceptance.  We accept that our daughter was diagnosed with cancer.  We accept that she was one of the 50% of children diagnosed with a brain tumor that will die.  We accept that there was so little information about her type of cancer, papillary meningioma, that there was no treatment protocol to guide Donna’s doctors.  They did the best they could, but as a family member who is a cancer researcher told us, everything that was done for Donna was nothing more than “a shot in the dark.”

So we do our best to accept something that defies the natural order of things.  We don’t like any of it, but we accept it.

We also know that other folks accept different things.  In trying to make sense out of childhood cancer, many turn to metaphors for answers.  Our children who have died become “angels,” gentle and revered creatures lucky enough to fly above us and be with God.  Or “warriors” waging war against the enemy inside their body.

This brings me no comfort.

angel

The words we use to talk about cancer, in children and adults, influence how we think about cancer and those unlucky enough to be touched by it.  Survivors are called “victorious” and “winners.”  Those who have not survived their cancer are called “angels” and “in a better place.”  I read a description last week that almost made me throw my iPad across the room.  A respected cancer advocate wrote the words “those who have fought and surrendered to cancer” to describe people who have died as a result of the disease.

Ugh.  ARRRRGGGGHHHH.

Words matter, people.  My four year old daughter is not an angel right now.  She is a child who died of an aggressive brain tumor.  I myself, early in treatment, used to refer to Donna as a warrior.  Then one day I looked at her — my beautiful and vulnerable daughter.  She was not a warrior.  She was a girl, little more than a baby, under two years old.  She held no weapons, she had no strategy, she answered to no general.  Donna was no warrior.  Just a girl.

I even try to stay away from the analogy of “fighting” cancer, which is so very common.  In a fight, we can all recognize that there are generally winners and losers.  If those who are “victorious” over their diagnosis are the “winners,” then it stands to reason that those unlucky enough to die after being diagnosed with a more aggressive strain of the disease or some unfortunate circumstance like infection, are “losers,” or have “fought and surrendered to cancer.”

Hell, no.

My girl is not a loser, and she sure as hell never surrendered.  Good freaking Lord, just days before she died she was still attending school.  Does that sound like surrendering to you?  Not to me.  Not a chance.

I don’t want to be all self-righteous here, or play the cancer card — the card that implies that my opinion holds more water than yours because of its hard earned credentials.  I do, though, want to inform and question and educate.

When we use words like angel and warrior to describe a child with cancer, why do we do that?  How are those the go-to metaphors for children diagnosed with the number one disease killer of children?  Does it make it easier to accept the brutal consequences of a disease that is underfunded and ignored by so many?

warrior

Does it make it prettier to think of thousands of angels floating above us, protecting us in a way that we were unable to protect them?  Does it make us believe that these kids are stronger than they actually are if we wrap them in the imagery of warriors with protective gear and weapons to defend themselves?

Human nature demands that we try and make sense out of things we don’t understand.  I think that is a large part of these metaphors that romanticize these most vulnerable of children.  Let’s not do that anymore, okay?  Let’s not lay our own needs on these kids.  They and their families are already carrying more than their fair share of burdens.

This is the reality:

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Angels and warriors only confuse the issue.