Donna Day 2013: Bloggers Unite

The saying is that March comes in like a lion and out like a lamb.  Donna Day 2013 proved that right.  There were 50 bloggers ROARING loudly about pediatric cancer and St. Baldrick’s yesterday.  One blogger’s voice and keyboard can be a powerful tool, but 50 collective voices and keyboards?  I think Walt Whitman said it best with the words “barbaric yawp.”  Thing is, though, that this March is gonna go out with a big ROAR, too, as the Donna’s Good Thing’s St. Baldrick’s shave will wrap up the month on March 30.  I am still reeling from the outpouring of love, support, stories, words, and blog posts from the participating bloggers.

From the bottom of my bursting heart, THANK YOU to all those who so willingly used their platform to talk about the not always popular topic of childhood cancer.  You are making a difference.

Without further ado, here they are . . .

Adventures of NinjaMama, “To Mary Tyler Mom, With Love”

Advice From Marta, “Cancer Sucks”

The Amazing, Affordable Adventures of Mama, Bunny and Pip, “Donna Day”

The Apocalyptic Ginger Chronicles, “Donna Day 2013”

Baby Sideburns, “Are You Kidding Me, Another Damn Holiday?  Oh Wait, It’s a Good One”

Cheaper Than Therapy,  “Donna’s Good Things:  St. Baldrick’s Event to Help Fight Childhood Cancer”

A City Mom, “It’s ‘Donna Day’ at ChicagoNow

The Crumb Diaries, “Curveballs:  Donna Day March 1, 2013”

Daddy Knows Less, “Feeling Blessed on #DonnaDay”

DeBie Hive, “Donna Day”

Deepest Worth, “Donna Day”

Dribbles and Grits, “Donna’s Day”

From the Bungalow, “Donna Day 2013:  Hair Grows Back”

Frugalista Blog, “Donna Day”

Get Fit Chicago, “If You Give a Runner a Tutu . . .”

Gig Masters, “Fundraiser for Kid’s Cancer”

Holy Fire, Cake Girl!, “Donna’s Day:  A Chance to Help Kids With Cancer”

Humble Writes Words, “It’s Donna Day!”

I Want a Dumpster Baby, “Choose Hope”

I’d Give You the Moon and Stars, “Donna’s Day”

Insane in the Mom Brain, “Donna Day!!!”

It Builds Character, “Donna Day:  Save Children’s Lives with St. Baldrick’s”

It’s Cool To Be OCD, “Donna Day”

Just Getting Started, “Support St. Baldrick’s and Donna’s Good Things”

Kissing the Frog, “Cancer Sucks, But We Can Do Good Things”

Shawn Renee Lent, “A Brain Tumor at My Dance Ricitle

Life As I See It, “Suck It, Cancer.  It’s Donna Day!”

Listing Toward Forty:  “Donna Day:  Support Pediatric Cancer Research”

Mary Tyler Mom, “Donna Day is Here!  Hooray!”

Moms Who Drink and Swear, “Sources Say It’s Donna Day:  The Facts About Getting the Facts Straight When It Comes to Funding For Pediatric Cancer Research”

Mother Naked, “Donna Day”

My Children Think I’m Perfect, “McTip’s Snips”

My Sports Complex, “Donna Day:  Playing in the Sand With Donna Lu”

Organized People Are Just Too Lazy to Look for Stuff, “It’s Donna Day!”

Part Time, “Spending Some Time With Donna to Beat Childhood Cancer”

Pinwheels and Poppies, “Donna Day 2013.  Let’s Do This”

Portrait of an Adoption, “Donna Day:  Raising Money for Pediatric Cancer Research In Memory of a Lovely Girl”

Razorblade Brain, “Change for Change”

Real Mom Nutrition, “It’s Donna Day”

Red Vines and Red Wine, “Celebrate Donna Day 2013 With Me!”

Ashbey Riley, “Celebrating Donna Day”

SarcasMom, “Donna Day Should be EVERY Day”

Stop and Blog the Roses, “Donna Day:  What Do Kids With Cancer Need?”

Suburban Scrawl, “It’s Donna Day!  #conquerkidscancer #DonnaDay”

Sweet Matthew Burr:  “Donna Day”

Tiny Steps Mommy, “Day Five:  Give Back Mission to Express Gratitude”

Tween Us, “Donna Day:  Raising Awareness and Money to Fund Childhood Cancer Research”

Ups and Downs of a Yoga Mom, “Today I Celebrate Donna Day by Donating to Pediatric Cancer”

We Band of Mothers, “Emily”

What a glorious Donna Day it was!  Thank you!

So I have no freaking idea why some of these links are in bold and other are not.  That is completely beyond my technical scope.  But subscribing to my favorite blogs is not!  You can do it, too! It’s true!

Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.

Donna Day Is Here! Hooray!

This is just one of dozens of Donna Day posts published by bloggers across America today, March 1, 2013, all in support of raising $ and awareness for the good work of St. Baldrick’s, and the goal of conquering kids cancer.  I am humbled, overwhelmed, honored by the generosity of the blogging community that has embraced Donna as their own.    

I am Donna’s Mama.  I carried that girl in my belly, felt her kick inside me, was her sole form of nutrition for six months, fed her, bathed her, cuddled her, taught her her colors and numbers, loved her completely.  Life was so sweet, so good, so simple and uncomplicated.  Wake up, cuddle Donna, head to work or plan a day together, come home, cuddle Donna, sing and laugh and play.  We had it so very good, so very, very good.

And then this happened.

 

Donna during her stem cell harvest in 10/2007.
Donna during her stem cell harvest in 10/2007.

We moved to Cancerville and our lives were forever changed.  We had visited Cancerville before, caring for my Mom as she lived and died with her own brain tumor in 2004 and 2005.  This was different.  After moving to Cancerville with Donna, we learned that we would never leave.  It is our home now.  The neighborhood sucks, but damn, the neighbors are amazing.

Over three years after Donna’s death, I am still trying to wrap my head around the impact her life and story have on people.  First published in 2011, the response to Donna’s Cancer Story sort of threw me for a loop.  I hear from people around the world on a fairly regular basis about the impact Donna has had on them, how she has shaped their perspective.  People have stopped drinking or using drugs because of Donna.  People have opted to care for foster children because of Donna.  People have chosen to go into pediatric oncology nursing and doctoring because of Donna.  People have hugged their kids tighter and read them more stories and demonstrated more patience with unruly toddlers because of Donna.  People have gotten tattoos because of Donna.  People have consciously worked to help others in their community because of Donna.

You see what I mean?  It is both amazing and overwhelming and uplifting and makes me so damn proud to be her Mama.

One of those people was a reader like you.  Her name is Jamie.  She was the cousin of a friend who read Donna’s Cancer Story as it was being published in September 2011.  She wanted to help.  She wanted to make a difference.  Tentatively, she called me and we talked.  She proposed Donna’s Good Things, the charity we started after Donna died, host a St. Baldrick’s event.  Would I be interested?

Um.  Yes.

Right after Donna died, we wanted nothing more to do with cancer.  It had taken my mom and our daughter.  It had taken enough.  We wanted to do something to honor Donna, but didn’t want to give cancer any more of our time or attention.  Pfffft.  Yeah, right.  What the hell were we thinking? Pediatric cancer advocacy is now an important part of my life.  Jamie just knew that before I did.

With Jamie’s suggestion, we did our research on St. Baldrick’s.  WOW.  What a fantastic organization.  They have funded more childhood cancer research than any other entity outside the U.S. Government.  They have excellent charity ratings, an extremely streamlined administrative tier, and minimal overhead.  St. Baldrick’s is the real deal.  They were Donna-worthy, if you will.  We were in.

In just one year, Donna’s Good Things has raised over $130K for children in treatment for cancer.  BAM!  Let me tell you, there is no better way to tell cancer to SUCK IT than to help raise $ to banish it.  Our shavees know this.  Our donors know this.  I hope you know this.  And as of this year, no matter where you live, you too, can host a Donna’s Good Things shaving event in your own community.  Do you live in Montana?  NO PROBLEM!  Florida?  We got you covered?  Oregon?  New York?  California?  All things are possible with St. Baldrick’s.  Just email marytylermom@gmail.com or heather@stbaldricks.org and we will hook you up.  BOOM.

On Saturday, March 30, we will host our 2nd DGT St. Baldrick’s shaving event at Candlelite Chicago.  There will be shaving — and hey, if you have a head, you are still eligible to shave it — lots of dough can be raised in 30 days (that’s the blue button, yo).  There will be beer and pizza and burgers and tater tots.  There will be face painting.  There will be smiles.  There will be a tear or two.  There will be lots and lots of hair to sweep.  There will be cake. There will be bravery.  There will be children and old ladies and lots of folks in between.  There will be love.  There will be joy.  There will be gratitude. There will be HOPE.

Hope is what Donna taught me.  More than any other lesson, and damn, that little girl had so many lessons to share, the importance of hope and joy in our lives — just our day-to-day seemingly dreary lives — was just part of her DNA.  It is now part of my DNA.

Biologically, parents pass DNA to their children.  With Donna, it worked the other way.  That is just how damn amazing she was.  My life is more joyful and full and rich and hopeful for being Donna’s Mama.  Every day I thank her for what she has given to me, what she continues to give me and so many others.

You can do a Good Thing today and donate to our St. Baldrick’s event.  Just click on the green “DONATE” button and make a difference for a child and family undergoing cancer treatment.  It is a bitch, that cancer treatment.  Honestly.  Some days I never thought I would make it.  We lived a life for 31 months that I would not wish on anyone.  Today we live a different life.  It is calmer than while we were in active treatment, but it can be sad and lonely.  Quiet.  We miss our girl, our Donna.  We thank the stars above that Donna left us with joy and love and hope and the finest example of how to live a full and complete life.

Please, consider donating.  Now.  Not later.  Not tomorrow or next week.  You’ll forget.  You will.  I know, cause I do it all the time.  Our lives are busy and frantic and crowded with responsibilities.  In the midst of that, think of Donna and all the kiddos and families who live in Cancerville.  It is damn crowded in here, let me tell you.  We could you your help — $5, $10, $20 and up — every dollar makes a difference when it goes for research.

Tell ’em Donna sent you.

I need you.  YOU.
I need you. YOU.
Get, scootin!  Children with cancer need your help!
Get, scootin! Children with cancer need your help!

Thank you, folks!  Donna Day is one of our favorite days of the year.  

 

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