A Mother's Mission: Advocating for Pediatric Cancer Awareness

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By Val Marshall

Val Marshall's cancer journey began in May of 2009 when her son Addison was diagnosed with acute lymphocytic leukemia. A visit to the family doctor for what they thought was a simple high school football injury turned out to be so much more.

Inspired by her son's strength and hope, Val strives to be a voice to help connect other parents on this journey.

Addison Marshall Crush Cancer

valmarshalll.jpgLast week I had the privilege of visiting our country's capitol in the role of advocate for pediatric cancer awareness.

As the lone representative from Texas, I had the pleasure of meeting with the health care aides for Sen. Kay Bailey Hutchison and Sen. John Cornyn. I also met personally with Rep. Michael McCaul and Rep. Ron Paul.

A day of training from CureSearch and Children's Oncology Group (COG) prepared us for our day on Capitol Hill. Riding the bus felt like the first day of junior high as everyone rushed to meet with the "popular kids," and the campus police and X-ray machines kept us in line.

I went with the mission of increasing awareness of our medical orphans, the "only" 13,500 children who are diagnosed each year.

I gently asked one staffer, "Could you perform your job with a cell phone or computer developed during Kennedy's presidency?" We are asking our pediatric oncologists to perform brain surgery with oven mitts, but are expecting soufflés!

When I pulled out Addie's 13-foot beads of courage and explained the procedures that our children endure with chemo from the 1950s, 60s and the 70s, I was met with puppy dog eyes of empathy. There seems to be a general consensus of surprise that only one drug had been developed for pediatric cancer in the last 20 years.

I also talked about the high medical cost of relapse when antiquated meds are the only option. On this day, Congress was trying to duct tape the budget together for another few weeks, so C-Span was on in every office to monitor the budget scenario. Chuck Todd, NBC White House correspondent, spoke of war fatigue on both sides of the aisle and that our opportunity was the bipartisan Pediatric Cancer Caucus chaired by Michael McCaul of Texas and Chris Van Hollen of Maryland.

I used McCaul's office as home base and returned often to update my progress. McCaul is like that special teacher in junior high. He is the sugar daddy for cancer kids. His wife even sits on a board at MD Anderson. When asked if I could invite her to attend a Family Advisory Council meeting, he whipped out his card and wrote her cell number on the back. This is a family that remains loyal to the mission.

Pounding the pavement

Currently, four representatives from Texas have joined the caucus. I assured each office that I visited (perhaps 20) that this would not require many meetings, but would provide the often-misunderstood facts surrounding pediatric cancer.

Telling the story with beads, pictures and essays was powerful and I was allotted 10 minutes but took 30 because no one has the guts to toss out a cancer mom when she's talking about watching the IV pole delivering poison and thinking with bated breath, "Will it cure him or kill him?"

I assured each member that when a child is diagnosed, LUCK is a four-letter word. We also don't need the four-letter word PITY. The only four-letter words needed are HOPE and CURE!

Each office was open about the budget woes, which I know are legitimate. But I countered with, "What about the Cold War, Vietnam and the Cuban Missile Crisis?" As cancer families, we are also fighting a war with little resources while trying to govern the day-to-day battles in  our families. I closed with a quote from President Truman, "... No country is healthier than its children ..."

In advocacy training it was stressed that to be effective, no member should know your party preference. I told each office, "This is neither a blue nor red state issue, it's a red, white and blue matter." 

Pushing though the pain

At the end of the day when my energy was zapped and my feet were throbbing, I sat on the wall facing the Capitol with little hope of continuing to the next building. I flipped open my book of pictures and stories and realized that this is a day in the life of a child with cancer -- tired, annoyed, hurting and just wanting to escape sickness. I said to myself, "Less yapping and more snapping."

I pushed on through the trail blazed by these incredible pioneers with tears in my eyes but strength in my step. I vowed to never stop lobbying for our most precious of assets, the children we love. 

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