Lisa Peabody lost her daughter Caroline to a brain stem tumor in 2004. In Caroline's memory, Lisa has become a powerful advocate for pediatric cancer research and tissue donation. In this guest blog post, she shares her family's story and her recent advocacy work at the Alliance for Childhood Cancer Action Day. She is also a volunteer advocate with the National Brain Tumor Society.
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, 3 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-worked, over-burdened lawmaker that my cause is more important than anybody else’s. There will be hundreds of groups in for fly-ins, where advocates from around the country meet with senators and congressman pleading for funding and support for their causes. I am amongst the masses and somehow, I must convince these leaders that my issues supersede all the others.
The previous day was prep day. I heard a dozen specialists, doctors, researchers, grieving friends, emotional moms and career lobbyists, spout words of 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 cancer that would categorize and organize critical research data. I also need them to allocate a small increase in funds for NCI, the National Cancer Institute, since NCI funds almost all pediatric cancer work. It doesn’t seem like much, but I know that my voice, coupled with the voices of the other 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-faced15 month old when I shared the traumas of her short life. At 13 months, Caroline was given the fatal diagnosis of a brain tumor in her brain stem. The stem 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. There was nothing out there that was pediatric and she was dying. Equally as horrific as her seizing from the lethal doses of radiation, was the honest fact that there was no available treatment designed specifically for the vulnerable undeveloped pediatric brain. 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.
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. It was then that we asked if Caroline could be an organ donor. We wanted to save the life of another baby. We wanted to spare another family this intense pain. We wanted to give away what she no longer needed.
In 2004, in order to be a donor, a patient had to be completely devoid of any brain function, but Caroline could breathe and her heart pumped without assistance, which mad her ineligible. We knew that when we made the decision to remove the assisted breathing tube, her breathes would be weak and her heart would stop. Couldn’t she donate then? We kept asking. We kept insisting how unfair it was that she couldn’t be a donor because of a small technicality.
Children’s Hospital of DC reviewed our case. They decided to make a special exception and allow Caroline to be a new type of donor, a Donation After Cardiac Death donor. Very few hospitals were allowing this. She gave life to two dying babies with her tissue donation and sight to two adults with the donation of her corneas. A few months later, Children’s Hospital adjusted their policies and made it standard procedure to evaluate all terminal patients for DAC donation.
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.
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.