Just believe and you’re almost there
Use your heart to show you care.
It’s your turn now
To show your world now
Open up your heart and let it grow.
-- The Lorax
It was a particularly difficult morning. I’m not sure what made things worse this month than last month, but they were. Atia woke up knowing what lay ahead. She’d been charged with the same impending task for the last 21 months. It was chemo day. We needed to eat breakfast, get dressed, do her hair, apply Emla (a numbing ointment) to her port, cover with press ‘n seal, get in the car and head down Lakeshore Drive to Comer Children’s Hospital. She enjoyed looking at the boats on Lake Michigan to her left and Buckingham fountain to her right. Every month, it was systematically the same – brutally routine and yet curiously comforting - with the exception of her quarterly spinal tap appointments.
Certainly, it was never one of Atia’s favorite days. We often opted to withhold the information from her until the last minute, revealing details of “the appointment” only after she’d awoken that morning. Invariably, she’d begrudgingly cooperate, even helping squeeze the white creamy ointment onto her port.
Atia lived in the moment, like other three year olds. Her simple, toddler manner and joyfully optimistic spirit prevented her from seeing the glum reality of what was to come. That’s not to say that she didn’t understand cause-and-effect. She absolutely knew that an Emla sighting meant a soon-to-be port access, but interestingly it didn’t incite memories of pain and discomfort. And therefore, her reaction was minimal. She didn’t fear it. She had yet to learn that experiences socially accepted and categorized as painful – like chemo treatment - typically elicited precursory anxiety, ghost pains, and genuine fear.
That is, until this time, when she was scared.
Atia proved that fear is directly proportionate to age. As one increased, so did the other. This time, she was older and here’s what happened that morning:
It is memories and experiences like this that fuel my desire to change things for these kids - these unsuspecting, trusting, adolescent beings that should be insulated from the relentless effects of this vile disease. I’m currently reading a fascinating book outlining the history of cancer, or rather, the biology of cancer, as Siddhartha Mukherjee, that author of “The Emperor of All Maladies,” calls it.His writing is captivating, informative and alluring. The more I read, the more I want to know.
It seems perverse that as recently as the late 1940’s “children with cancer, as one surgeon noted, were typically ‘tucked in the farthest recesses of the hospital wards.’ They were on their deathbeds anyway, the pediatricians argued; wouldn’t it be kinder and gentler, some insisted, to just ‘let them die in peace?’” Thank goodness for pioneers like Sidney Farber, a brilliant pediatric pathologist who “would try to use the knowledge he had gathered from pathological specimens to devise new therapeutic interventions.”
So often, change begins with one - someone who has a hope, a vision, a “fanatic’s enthusiasm,” as Mukherejee called it. I’m the first to admit that I’m obsessed with childhood cancer. My passion is set deep within my bones, almost like a Leukemia. My impetus seems to multiply as rapidly as mutated cell growth.
Every day I wake up more impassioned. Childhood cancer advocacy has become my life’s calling. Next to Atia’s Project Ladybug Fund, my second proudest accomplishment (currently under consideration) is HB 4211, getting The Childhood Cancer Research Fund donation option added to the IL income tax form, allowing residents to donate a minimum of $1 or more to the noble cause.
I was planting a seed; a notion, to increase awareness, raise much needed money and hopefully inspire others around the country to look into doing the same within their own state (if it collects state income tax). Turns out that Amy Aldridge, Sahara’s mother, a Missouri resident learned about my bill and was encouraged by its simplicity – give the tax payer an easy way to donate.
And the ripple effect began…
Within weeks, she reached out to her local representative, shared her daughter Sahara’s story and the grim statistics about childhood cancer research and on the spot Rep. Wayne Wallingford agreed to support her initiative. Amy’s legislation called, “Sahara’s Law” will benefit CureSearch for Children’s Cancer, a nationally recognized organization funding clinical trials and research conducted at 175 hospitals across the nation.
Amy’s efforts are in honor of her 13 year old daughter, Sahara, who passed away over four years ago, after a 17 month battle with brainstem glioma, a form of childhood cancer. Dissatisfied with current childhood cancer funding, in 2010, Amy’s family launched the annual Hoops for Life 5K Run/Walk, which has grossed over $16,000 for pediatric cancer research, making it the largest race in Southeast Missouri.
Interestingly, the legendary Rick Springfield, “Jessie’s Girl” singer and actor on “General Hospital,” is a big Sahara fan, too. After a chance meeting in 1999, he and her family became fast friends, and he has since done everything in his power to support all of Amy and her family’s efforts along the way. This weekend, he invited Amy to blog about “Sahara’s Law” on his homepage. Check it out! Amy’s local news station also featured the story.
I am humbled (and excited beyond belief) to be referenced (either by name or as “a similar effort in Illinois”) as the inspiration behind Amy’s efforts. I mean, my name is on Rick Springfield’s website for cryin’ out loud! I had a chance to talk to Amy this weekend and there was an instant connection. We’re Mamas on a Mission.
The seed has been planted and you better believe we’ll be tending our crops with love, attention and unparalleled resolve!
Can’t wait to see what the next ripple will bring.
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Tags: acute lympoblastic leukemia, ALL, Amy Aldridge, Atia, Atia's Project Ladybug fund, childhood cancer, HB 4211, Hoops for Life 5k run/walk, Leukemia, pediatric cancer, Representative Wayne Wallingford, Rick Springfield, Sahara's Law, Sidney Farber, The Childhood Cancer Research Fund, The Emperor of All Maladies