Val Marshall: An Advocate for All Pediatric Cancer Patients
Family Matters - Spring 2011
In her own words:
My husband and I have decided that we both need to become advocates who speak with members of Congress about the lack of pediatric cancer research.
The chemotherapy our son Addison has been on for two years was developed in the 1950-1970s. Many strides have occurred with different combinations of these agents, yet the late side effects can be horrifying and the relapse rate is over 30%.
To witness a teenager having to have a total hip replacement because of this drug regimen is too painful to bear. To attend memorials for kids who have had the best care, best prayers and best of attitudes is gut wrenching. To read that one of the drugs in the treatment for leukemia can actually cause another form of leukemia makes me extremely angry.
I believe that Congress may be a good place to start. Childhood cancer is not a blue state issue or a red state affair; this is a red, white and blue non-partisan crisis. Every day, 46 families in the United States hear a phrase that will change their lives forever − “your child has cancer.”
Taking advocacy to Capitol Hill
So, during March, 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 to the CureSearch Children’s Cancer Awareness and Advocacy Day, it was my pleasure to meet with the health care aides of Texas Senators Kay Bailey Hutchison and John Cornyn. I also met personally with Texas Representatives Michael McCaul and Ron Paul.
A day of training from CureSearch and the Children’s Oncology Group prepared all of the pediatric cancer advocates for a big day on Capitol Hill. Our goal was to increase awareness that the 13,500 children diagnosed with cancer each year are true medical orphans. We were patted on our heads with murmurs of, “I just can’t imagine …”
I asked one staffer, “Could you perform your job with a cellphone or computer developed during the presidency of John F. Kennedy – because that’s the same thing as the parents of these pediatric cancer patients asking pediatric oncologists and surgeons to perform brain surgery with oven mitts and expecting to see soufflés as the result!”
I anticipated an emotional reunion with strangers who are fellow cancer families, but I was unprepared for the sympathy in each congressional member’s office. When I pulled out Addie’s 13-foot “beads of courage” chain and explained the procedures that our children endure with chemotherapy from the 1950s, ‘60s and ‘70s, I was met with eyes of empathy.
There seemed 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 medications and treatments are the only option.
Visiting with senators and congressmen
On the day I visited, Congress was trying to duct tape the budget for another few weeks so C-SPAN was on in each and every office to monitor the budget scenario. Chuck Todd, NBC White House Correspondent, spoke of war fatigue on both sides of the isle, and explained that our opportunity was the bi-partisan Pediatric Cancer Caucus chaired by McCaul of Texas and Chris Van Hollen from Maryland.
I used McCaul’s office as home base and returned often to update my progress. McCaul’s wife sits on a board at MD Anderson and 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 who remains loyal to the mission.
Currently, only 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.
This wasn’t a pity-party, but …
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, “Will it cure him or kill him?”
I’m sorry to say this, but cancer parents win the poker prize of the “worst nightmare” contest. I assured each member that when a child is diagnosed, a family’s luck is a four-letter word. We don’t need the four-letter word, which, by the way, is “pity.” The only four-letter words needed are HOPE and CURE!
Each office I visited was open about the budget woes, which I know are legitimate. But as cancer families we are also fighting a war with few resources, while still trying to govern the day-to-day lives of our families. 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 apologize if I become a bore about this, but all my time in the fox hole of life-threatening illnesses is making me feel it necessary to be part of the answer instead of whining about how unfair life can be.
If I shove a gold ribbon in your face and ask you to wear it to promote awareness, please just smile and say, “yes, ma’am.”
We all know what the pink ribbon signifies, but I assume that gold was chosen for childhood cancer because kids are our most precious resource. I do believe that I remained loyal to my goal − and I didn’t have to wrap Addi’s beads of courage around anyone’s neck!
The CureSearch Children’s Cancer Awareness and Advocacy Day partnered with the Association of Pediatric Oncology Social Workers, Children’s Cause for Cancer Advocacy, Kid Cancer and the Leukemia Lymphoma Society to host more than 200 families representing 28 states from across the country.
In total, these advocates held meetings with more than 180 Congressional appointments, including 40 personal meetings with senators and representatives.
As a result of these meetings the following was accomplished:
- increased membership of the (House) Congressional Pediatric Cancer Caucus;
- heightened bipartisan interest for the Creating Hope Act in the Senate and House and the introduction of the bill by the Senate on March 17 (Most members showed a great willingness to support this creative initiative to encourage new drug development for children's cancers and rare diseases.);
- renewed bipartisan interest in signing on to the Childhood Cancer Survivorship and Quality of Life Act once reintroduced later this year; and
- elevated bipartisan concern for preserving the National Institutes of Health budget and holding the line for pediatric cancer research.
In This Issue
- They Walk the Walk
- Val Marshall: An Advocate for All Pediatric Cancer Patients
- DePinho Sole Finalist for President
- Opportunities for Cancer Patients After High School
- Young Patient, Family Experience Shock of Childhood Melanoma
- Spring Has Sprung for Children's Art Project
- Paradise Right Setting for Transplant Experts
- Lessons From the Rodeo