I get on the Metro headed to the Capital Hill stop. I’m wearing my ‘walking’ shoes even though I’m dressed conservatively and professional. The train is quiet and I’m able to study the statistics one more time: this year, approximately 15,780 American families will have a child diagnosed with cancer, 20% of those will result in death and every day, three families mourn the loss of their child to a brain or spinal tumor. I switch to a game of Candy Crush in an effort to relax. Today is important. I know that what I say, how I behave, my attitude, my mood will all affect my meeting. I need to be compelling in my story, create drama and elicit emotion but stay in control, know the facts and be intelligent and ideally, convince an over-burdened lawmaker that my cause is more important than anybody else’s. There will be hundreds of groups on the Hill for fly-ins, where advocates from around the country meet with senators and congressmen pleading for funding and support for their causes. I am amongst the masses and somehow, I must convince these leaders that the issues I’m advocating for rise to the top.
The previous day was prep day. I heard a dozen specialists, doctors, researchers, grieving friends, emotional moms, and career lobbyists talk about science and progress, loss and pain, and define the direction of legislation. I am armed with a perfect combination of academics and reality. I am ready to face my lawmakers and guide them in my direction, lead the leaders to drink my water and fill my cup.
I need them to vote in favor of funding a pediatric cancer tissue repository, a bank of tumor samples that would categorize and organize critical research data. I also need them to allocate a relatively small, but vital, increase in funds for NIH, since NIH – through its National Cancer Institute – funds virtually all pediatric cancer work. It doesn’t seem like much, but I know that my voice, coupled with the voices of the other pediatric 250 cancer advocates, each pleading with their district representatives, will amount to more than ‘much.’ It will be gigantic and show value and conviction for the youngest victims of cancer.
This advocacy isn’t new to me. I had already established a relationship with Congressman Chris Van Hollen. Several years earlier, I had told him Caroline’s history. I gave him a picture of my red-haired, pink-faced 15-month old when I shared the traumas of her short life.
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At 13 months, my daughter Caroline was given the fatal diagnosis of a brain tumor in her brainstem. The brainstem feeds into the nervous system and the spine, a place that no knife can reach. We were left with only chemical approaches. After one week of chemotherapy, the tumor changed, going from a controlled, slow-growing tumor to an aggressive grade IV. She was paralyzed, immobile, unable to wiggle her toes, unable to scratch an itch, she couldn’t speak, she couldn’t smile, she couldn’t cry.
I knew that subjecting Caroline to an adult radiation clinical trial at NIH could have fatal consequences, but there was no other options. But we were out of options and she was dying, so we agreed.
Equally as horrific as having to watch her seizures as she endured dangerous doses of radiation, was the honest fact that there are no available treatments designed specifically for children with brain cancer and their vulnerable, undeveloped pediatric brains. I knew that her participation would provide immeasurable data and that whatever the outcome, whether she was miraculously cured or devastatingly damaged, researchers would learn and grow from her participation.
But Caroline’s brain had become so broken that the only function it served was to tell her lungs to breathe and her heart to beat. It could do nothing else. Her body was filled with thriving organs but her brain was irreversibly damaged. She would never recover.
So after 23 ambulance rides to NIH, emergency surgery for a torn duodenum, recovery from near death sepsis and 63 days of complete debilitating paralysis, we allowed our daughter to rest and we said our most painful and definitive good byes.
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This day on the Hill is a chance for me to re-connect with Caroline. It is an opportunity to indulge in her, enjoy her, express pride in her scientific gifts and to mourn her. I still possess the natural motherly instinct to protect and care for my baby and by advocating for research, advocating for a cure for her disease, I can feel like I am still doing my mothering part. It is my way of healing.
To learn how you can become and advocate, too, as well as all of the other ways to become more involved with the National Brain Tumor Society, please join the fight.
To learn more about what the National Brain Tumor Society is doing to fight pediatric brain tumors please check out our pediatric research initiatives.