My Testimony at the Illinois State Capital

My Testimony at the Illinois State Capital

Laura and Atia, 4 years old

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The day I testified at the Illinois State Capital Building in front of the House Revenue and Finance Committee was nothing short of extraordinary. While I was proud of my speech and the role I played that day, it was so much more than that. It was my team’s flawless execution, the committee’s response, the observers’ enthusiastic nods. It was all the unexpected surprise meetings, interviews and parades (yes, there a full fledged parade outside that Capital that day – I kid you not).

Every moment of that day was magical, and easily earned its place among my other treasured and life-changing days: my 16th birthday, the day I met Steve, my wedding, my children’s births, my cancer diagnosis, Atia’s cancer diagnosis, my 5-year survival mark, Atia’s treatment end, etc…

Of course, leading up to Thursday, May 3, 2012 I was a nervous wreck and shaking like a leaf. I read and rewrote, read and rewrote my speech about a million and one times. It was tourture trying to fit my speech into 3 minutes (there’s a written 3 minute rule – look it up!).

The night before, we arrived at my mom’s house in Springfield around 11PM. In an unfortunate oversight, we added an extra hour to our trip after realizing we’d forgotten our suits and were forced to backtrack over an hour round trip.

The morning of, we arrived at the IL Capital Building around 7:30AM. We found our room. It was empty.

I practiced at the podium.

Sheila Quirke, my amazingly brilliant friend and her deliciously sweet family arrived, followed closely by Dr. Cunningham and Rep Cynthia Soto.

We powwowed, sharing facts we’d be citing, comparing notes and securing the plan.

The room began to fill. It was standing room only. Then it was show time.

Rep. Soto kicked things off by describing The Childhood Cancer Research Fund's intentions to the committee and audience, and explaining why she sponsored our bill. She, then, introduced me.

Atia and I and stepped up to the microphone. The all-consuming nervousness I’d been struggling with completely dissolved. I looked into the eyes of our IL leaders and began my impassioned testimony. It was warmly received. Towards the end, faint cheers rang out when I announced that Atia was in full remission. In less than 3 minutes the room embraced our story, celebrated our victory and supported our cause. It was mind-blowing.

Before we were excused, Rep David Harris asked a question about the bill, shared his very touching, personal story with pediatric cancer and while looking me directly in the eyes, complemented my bravery and applauded my initiative. Stunned. I was stunned!

As we were stepping back, the Chairman asked Atia if she’d like to say anything. Without hesitation, she leaned in to the microphone and in her happy-go-lucky, cute-as-a-button, sweet little 4-year-old-voice she said, “Hi!”

The crowed erupted in laughter. Atia smiled and giggled. She then leaned down and said, “Thank you.”

My heart swelled.

In that moment it was difficult to deny there was a purpose for every obstacle we'd faced. In that moment, the answer seems crystal clear: I had cancer so I’d know Atia’s battle. Atia had cancer so we’d come to that very moment.

Sheila Quirk, aka Mary Tyler Mom, was up next. Her testimony was gripping, poignant and brave. She shared her family’s journey with her daughter’s cancer. There was no roadmap, she explained, “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.” Sheila asked the committee not for money, but for an opportunity. She was brilliant, eloquent and downright incredible! Read more of Sheila’s testimony on Mary Tyler Mom.

Dr. John Cunningham, Chief of Pediatric Hemotology/Oncology, Director of Hematopoietic Stem Cell Transplantation, and Professor of Pediatric Physiology and Stem Cell Research at The University of Chicago Comer Children’s Hosptial, certainly proved why he’s internationally revered as a pediatric cancer expert. His delivery was flawless, as he explained exactly what The Childhood Cancer Research Fund would mean to pediatric cancer research and its potential advances. He cited many of Comer’s impressive medical and research achievements. Everyone was thoroughly impressed; he was the perfect finale.

Dr. Cunningham stepped back, and Rep Soto invited my family and Sheila’s family to stand before the committee as a group. We thanked the committee for their time and consideration.

Moments later the Chairman declared, “This committee has all intentions of passing this bill…” We cheered. We hugged. We thanked them once again. We exited the room.

Pure elation.

As if that experience wasn’t already as good as it gets, Rep. Soto escorted us into the General Assembly Hall and then arranged a private Meet and Greet with Governor Pat Quinn, in his office.

As we were waiting for him, the kids made a playground out of his desk and conference table. Shhh… don’t tell!

Shortly thereafter, News Channel 20, Sprinfield’s ABC-TV affiliate, showed up to interview us. Shantel, the reporter, was such a wonderfully compassionate woman, moved by our efforts. The news story.

The day wrapped with pictures outside and the Illinois Law Enforcement Officers Memorial service parade.

As the moments passed, the exhilaration amplified almost to a point of complete intoxication. I know I sound as if I’m romanticizing the day, but I’m not. I was euphoric, weightless, floating on a sea of bliss. All.  Day.  Long.

The team: Dr. Cunningham, Laura Lutarewych (me), Representative Cynthia Soto, Sheila Quirke

We did it!

Below is my testimony and a series of pictures showcasing the day:

Good morning Mr. Chairman and members of committee. Thank you so much for allowing me the opportunity to speak before you today. My name is Laura Lutarewych and this is my 4 year old daughter, Atia.

Three years ago, Atia was like most children her age; she was fearless and active, until one day, she collapsed. Within a week she transformed into a lethargic, sick child. After a series of disturbing side effects and several visits to the ER, Atia was diagnosed with leukemia. We were beyond shocked. It was a double-whammy.

3 years earlier, I had been diagnosed with stage IIIb Melanoma and given a 40% chance of survival. During my difficult and painful battle, I prayed for two things (1) to survive and (2) to be a mother.

We were devastated knowing that our baby would soon undergo grueling treatments, much like I had, but in a more vulnerable, delicate vessel. It was agonizing to watch Atia and the other children endure such invasive procedures and toxic treatments. Atia’s compromised immune system often led to hospitalization due to infection.

All too often, I heard parents cry out, “If I could take this from you, I would.”

The harsh reality is that if a parent could in fact swap places with their child, most likely they’d have access to more resources and more extensively funded research.

Currently, childhood cancer receives about 4% of the national cancer research budget. And, that 4% is divided among several different cancers, like leukemia and neuroblastoma, to name a few.

In the US, the average life expectancy is 72 years old. The average age of a child diagnosed with cancer is 6. When a child survives cancer, 66 years are saved. Under the current research allotment to pediatric cancer research, those years are valued at $940 per year. Compare that to an adult cancer, like Prostate Cancer, whose average age of diagnosis is 68, and whose years saved are valued at $10, 226 each.
Let me say that again. A child’s life is valued at $940 a year, whereas an adult’s life is valued at over $10,000 per year.

Childhood cancer is the #1 disease killer of children. 1 in 5 will die, and 3 of the 4 survivors will suffer late-effects, such as infertility, heart failure, and secondary cancers.

The answer is clear: we need more funding; funding to discover a cure; funding to uncover less toxic treatment. Our scientific experts have the talent and ability; they simply need the funding.

In the late 1940’s, according to the book The Emperor of All Maladies, "Children with cancer were typically tucked in the farthest recesses of the hospital wards, left to die in peace." Clearly, we’ve made great strides over the last 60 years.

Atia is currently in full remission and 8 months post treatment. Sadly, all kids with cancer aren’t as fortunate as Atia. By today’s end, 46 more children will be diagnosed with cancer, and 7 will die.

That is why Atia and I humbly stand before you requesting The Childhood Cancer Research Fund check box. It will do more than give IL residents a chance to contribute; it will provide new hope for kids currently battling cancer and for the 13,000 children who will be diagnosed this year. Thank you.

My Next Blog > A Prized Ponytail


 

All pictures taken by Kristen Schmid, courtesy of the University of Chicago Medicine. 

My Next Blog >  A Prized Ponytail

 

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  • You are my hero moms, Laura and MTM. Congratulations on this milestone accomplishment!

  • In reply to jiyer:

    Thank you so much. It was a labor of love, a charge born of necessity. The funding pediatric cancer currently receives is unacceptable and change is in order. If it can't come from the top-down, then we'll do it from the bottom-up! Give the people the option, let them make the choice to help fund research. Kids matter. They're important. It's a simple as that. I am grateful for your support. Thanks for following the story as it unfolds.

  • In reply to Laura Lutarewych:

    Kids aren't just important, they are the future. It is astounding to me that such little value is accorded to their lives. Kudos to you for taking the initiative on this.

  • Thank you for posting the test of your testimony. I was moved and impressed by your articulateness and passion. And thank you a million times more for your advocacy for research into childhood cancer and treatment. You are a mom-hero.

  • In reply to MAMil:

    You're very welcome. It took me weeks to finally get it where I wanted it. Advocating for this cause is in my bones, it's what I do. I'm very thankful to folks like you who support the efforts of all who are working hard to make a change. As I commented to jiyer above, kids matter, and anyone who has witnessed a child suffer through cancer treatment, watched a child die from cancer, or survive cancer knows that these kids are worth every moment dedicated to advocating on their behalf. Thank you for your comment and your support. Here's to many, many other states following suit.

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