I actively fought for my life for over 365 days straight. While much of it happened while I was asleep, because of the pain medication, or soaking in the bathtub, because of my aching joints and muscles, I was faced with my mortality every moment of every hour of every day. I never got a break. I was 28 years old and I was battling cancer - stage 3b melanoma.
The Fight was all consuming and my existence was stripped down to the barest essentials, focused solely on the fundamentals like eating and drinking. Getting through the day was my goal every day – so simple and yet so monumental. Enduring procedures, invasive scans, and continuous Interferon injections was no easy feat.
After surviving and enjoying two years of blissful post cancer life - of wifehood and motherhood - we once again found ourselves gasping for air after receiving the blow that Atia, our 17 month old daughter, had cancer – Acute Lymphoblastic Leukemia (ALL). We spent over twice as long fighting for Atia’s life every moment of every hour of every day. It was a million times more terrifying, difficult and complicated.
For the last six years, in some shape or form, cancer has infiltrated our lives - it’s taken the lives of my father-in-law, grandmother and husband’s aunt, several sweet children we’ve crossed paths with along the way, and many of our friend’s family and friends. And as of yesterday, my grandpa has been diagnosed with thyroid cancer.
If you’ve been following my story, you know that I’ve tried my darndest to transform our suffering into hope for others – launching Atia’s Project Ladybug Fund - I’ve shared the nitty gritty details of our journey to realistically illustrate what a family goes through, how hard it is, how frightening it is and how weak and vulnerable the kids can become.
I’m no expert on childhood cancer, but I know more about it now than I ever did before. My daily life is immersed in it. I read everything I can about it. While researching the various forms of childhood cancer, their prognosis and other fascinating details I quickly uncovered the not-so-secret secret - childhood cancer research is grossly underfunded, most of the current drugs for kids are over 30 years old, and are merely a modified strength of adult chemotherapies. It’s appalling, shocking and baffling.
Anyone who knows me knows that the majority of my conversations circle back to childhood cancer and Atia’s Project Ladybug Fund. One of my favorite topics is brainstorming how to raise more money to support the psychosocial aspects of childhood cancer and its clinical research needs. It was during one of those convos that a friend mentioned the Charitable Deduction check off boxes on the Illinois State Tax Form’s Schedule G (which ties back to Line 33 on the IL-1040) stating:
You may contribute to one or more charitable contribution funds. Contributions to the funds may be in any amount of $1 or more and will decrease your refund or increase your balance due.
The seed was planted and my quest began. How could I get The Childhood Cancer Research Fund on the form? There are over 12 million IL residents.
- If 30% of taxpayers gave $1, we could raise $3.6 million;
- if 10% of taxpayers gave $1, we could raise $1.2 million;
- if 5% of taxpayers gave $1, we could raise $600 thousand.
It’s one dollar. Who wouldn’t give $1 of their state tax refund to help fund cancer research that could save children's lives?
So, my legal counsel and I set out to create language defining The Childhood Cancer Research Fund, outlining the type of programs it would benefit and how the money must be used:
The Childhood Cancer Research Fund is created as a special fund in the State treasury. Moneys in the fund shall be used by the Department of Public Health to make grants to public or private not-for-profit entities for the purpose of conducting childhood cancer research. For the purposes of this Section, "research" includes, but is not limited to, expenditures to develop and advance the understanding, techniques, and modalities effective in early detection, prevention, cure, screening, and treatment of childhood cancer and may include clinical trials. The grant funds may not be used for institutional overhead costs, indirect costs, other organizational levies, or costs of community-based support services.
In early February 2012, I met with IL State Representative Cynthia Soto and presented my idea. I shared my story, the facts about childhood cancer, the dire need for additional research funding and how beneficial this could be for the amazing pediatric cancer labs and researchers in Illinois. Their discoveries could result in wide-ranging advances for the entire pediatric cancer community.
Rep. Soto understood the need and without hesitation offered to support this bill. She submitted the language to her committee for review and invited me to gather a small group of advocates and medical experts to testify down in Springfield, our state capital.
So, to stand beside me, I immediately reached out to none other than the incredible Sheila Quirke (aka, Mary Tyler Mom) who is an inspirational Cancer Mom, and a fellow ChicagoNow blogger who recently told the harrowing details of her daughter's battle in, Donna’s Cancer Story (if you haven’t read it, you must!). She founded Donna’s Good Things and is heading up one of the most successful St. Baldrick’s head shaving fundraisers. She’s a mother, a powerhouse and is brilliantly eloquent.
I also reached out to Dr. John Cunningham, the Chief of Pediatric Hematology/Oncology at The University of Chicago Comer Children’s Hospital. He is a renowned expert, extraordinarily talented and a genuinely warm-hearted man.
Together, I believe we are a formidable team representing both outcomes of childhood cancer, and the two leading hospitals in Chicago – Comer’s and Children’s.
Last Friday, HB 4211, The Childhood Cancer Research Fund (house bill),was officially filed. Seeing it in black and white brought me to tears. At that moment, it became real. Really, real. It’s magnificent how a simple desire can turn into a solid idea, which can lead to a formal proposal and ultimately turn into a bill which is filed with the intent to change Illinois law.
Our testimony is set for sometime next week, and then it goes to vote. I’ll be sure to keep you posted. Wish us luck!
You'd be willing to donate at least $1, right? I'm counting on it!
To read the entire bill, click here.
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