Mary Tyler Mom Goes to Springfield

Photos by Kristen Schmid, courtesy of the University of Chicago Medicine

I’m a reformed political junkie.  Vice President of the College Democrats, yo, class of 1991.  We won’t talk about the fact that my boyfriend was a College Republican.  Somewhere along the line, I lost the faith.  Politics don’t move me the way they used to and I no longer believe what politicians tell me.  Don’t get me wrong, I vote and have opinions and still hope for brighter days, I just no longer feel politics is the way to get there.

All that went out the window when a fellow Cancer Mom contacted me in February about HB 4211, the Illinois Childhood Cancer Research Fund.  Laura, over at Ay, Mama, mother of Atia, and Director of Atia’s Project Ladybug Fund, graciously asked me if I would ever be interested in testifying in Springfield, Illinois’ capital, on behalf of an annual income tax return checkbox, enabling Illinois tax payers to donate $ to pediatric cancer research as part of their annual taxes.

Um.  Yes.  Yes, I would.

Well all of that came to fruition bright and early last Thursday morning when me and Laura made our impassioned pleas.  It was solemn, it was fun, it was empowering, it was a packed house.  I wrote in January that children with cancer need research dollars more than they need a bald Barbie.  I still stand by that and my testimony on Thursday was the proof of that snarky pudding. 

It is an emotional process to continue to tell Donna’s story.  Mary Tyler Dad and I say it is how we parent her now, and sad as that is, it is true.  In the absence of homework and tween drama and first dates and sibling squabbling, we have Donna’s Good Things.  We can’t hug Donna’s Good Things, or comfort it, or tickle it behind its ears or read it stories before bedtime, but we can nurture it.  We can support it and help it grow and develop.  It’s not enough, but it is something and it is what we have.

I am supremely grateful to Laura, my fellow Cancer Mom, herself a cancer survivor, for reaching out to me and including me and Donna’s Good Things in her initiative.  I like her.  She is smart and pragmatic.  In our first conversation she laid it out on the table:  Atia was treated at Comer Children’s Hospital at the University of Chicago; Donna was treated at Children’s Memorial, the soon to be Ann and Robert Lurie Children’s Hospital of Chicago (first week of June I will be writing about that transition).  Atia was alive; Donna was dead.  Together, we accounted for the majority of children with cancer being treated in Illinois.  She had me at “Hello,” to be honest.

Something that grieving parents fear is that their child will be forgotten.  And that is a very real possibility.  When Laura was testifying, she held beautiful Atia in her arms.  Atia shines brightly.  She is a gorgeous girl, full of life and pluck.  A lot like her Mom.  Her testimony was received well, people welling with Atia’s story, and questions were asked when she finished.  When I reached the podium, I introduced myself and opened with a punch, “My daughter, Donna Lubell, died of papillary meningioma, a rare and aggressive brain tumor, on October 19, 2009 at four years old.”  Eyes were averted.  I tried to make eye contact, but it was hard.  People don’t want to hear about children that die.  People don’t want to look a grieving parent in the eye.  It’s too harsh a reality.  Trust me, I know, I get it.  Sometimes it’s hard to look in the mirror.  Laura is not afraid to look me in the eyes.  And she appreciates the power and significance of educating people that pediatric cancer kills children.  Seven every school day.  One in five of every child diagnosed with cancer will die. 

Donna’s story is now part of the congressional record for the State of Illinois.  That’s saying something.  And even if people could not look at me when I spoke, I could feel that they were listening.  And I could feel Donna, too, keeping me company, guiding me through the day.  And what a day it was.  I am honored to have testified beside Laura and Dr. John Cunningham, Chief of Pediatric Hemotology/Oncology at The University of Chicago Comer Children’s Hosptial in our attempt to make the Illinois Childhood Cancer Research Fund a reality.  Grateful thanks are also extended to our sponsor, Representative Cynthia Soto, of Illinois’ 4th District.  She could not be a more invested sponsor or a more gracious host to us in our visit to the Capital — even getting us a meet and greet with Govenor Quinn. 

I am so proud of what we did together, Laura and I.  I’ve said it before, but Cancer Moms are some of the most amazing people you will ever meet.  Never underestimate a Cancer Mom.  Word.  Thursday we were able to do something that could potentially make a vital difference in the lives of thousands of Illinois children.  Here’s to passage of the Illinois Childhood Cancer Research Fund, here is to the researchers that need our help, here is to the taxpayers giving generously, here is to the children, here is to Donna. 

We did it, girl. 

Good morning, Mr. Chairman, and Committee Members. My name is Sheila and I am honored and humbled to be here today. 

My daughter, Donna Lubell, died of papillary meningioma, a rare and aggressive brain tumor, on October 19, 2009 at four years old.

Donna had an early prognosis of 2-3 months when she was diagnosed just under two years old.  Her oncologist at Children’s Memorial Hospital, the soon to be Ann and Robert Lurie Children’s Hospital of Chicago, gently told us that it would be perfectly reasonable not to treat her cancer, to bring her home and enjoy the time she had left.  We opted to treat, under the guidance of our team, and are so grateful we did. 

Though more than half her life was spent in that treatment, cancer did not define Donna.  Her bright and intelligent nature did.  Her astounding vocabulary and empathy did.  She was perfect measures of grit and grace.  She loved books and dancing and her baby brother Jay.  She was and continues to be a wonder to us and our guide.

Donna’s thirty-one months of treatment were an endurance test for our family.  They included four tumor resections, six rounds of inpatient chemotherapy, followed by six hospitalizations for neutropenia,  a stem cell transplant, twelve weeks of out-of-state proton beam radiation treatments, and four months of palliative and hospice care in our home. 

Her treatment team, lead by Dr. Stewart Goldman, had no roadmap to guide them.  There was no protocol for them to consult.  Every single treatment decision that was made was a shot in the dark, an educated guess, a hope, and a wish.  The thing that failed Donna was the science.  Her cancer was simply  better equipped than her doctors. 

Great and tremendous strides have been made in cancer research in the past few decades.  When children like Atia are diagnosed with ALL now, almost nine out of ten of them will survive.  Those are pretty good odds, until you realize that they apply to children.  Our children.  Your children.  Illinois’ children. 

I stand before you today not asking for $, but asking for opportunity.  The 248 children that were newly diagnosed with cancer at Children’s Memorial in 2011 need that opportunity.  Their families need that opportunity.  Give us this opportunity to better equip the doctors and researchers that treat our children.  Do it for Donna, and Atia, and for the thousands more that will follow them. 

My humble thanks to you.

 

Things are looking up for Illinois kids.

Hand shake with Illinois Governor Pat Quinn

Mary Tyler Mom, Rep. Cynthia Soto, Laura of Atia’s Project Ladybug Fund