I'm only 16 years old, but I've already survived a cancer that nearly killed me -- medulloblastoma, a cancer of the brain. During a struggle that started when I was ten and lasted four years, I met many other kids with cancer. At Children's Hospital of Philadelphia (CHOP), I was one of the older patients, and the smiles and laughter of the little kids kept me going. There was no shortage of love and cheer -- or hope that we would each make it.
What was in short supply however, were new and effective treatments for the cancers these kids and I faced. There were breakthroughs in treating childhood cancers, like leukemia, 40 or 50 years ago, but then there wasn't much progress in the past 20 years or so. Kids are still being treated with many of the older therapies and they are very toxic, leaving side effects that last a lifetime. (I get to pick any hair color or style I want because I will never have any of my own... thanks to all the radiation and chemo.)
I made incredible friends during my treatment, and too many didn't make it through. My dear friend Landon died, and I flew all the way to Alaska for his funeral. So many passed away that I began to wonder why I was the lucky one to still be alive. Think of that -- I was a 12-year-old girl with survivor guilt, like someone who lost their family in a fire.
I survived because of an experimental treatment. The idea was to try to destroy the cancer with radiation, so much that my bone marrow would be almost wiped out and unable to produce new blood cells. So first they removed bone marrow stem cells and stored them in a freezer. Then, when the radiation and chemotherapy was done, they defrosted the stem cells and infused them back into my body.
It worked. I survived, my body got back to something close to normal, and last October the doctors told me I was officially in remission. The treatment is now widely used, giving new hope to both kids and adults in that situation.
Hope: that's probably the most important thing for kids with cancer, their parents, brothers, sisters, families.
That's why I am enthusiastically supporting a new initiative by the giant technology company Siemens. They call it "The Baton Pass," and it revolves around a real baton -- a device that is passed from person to person and lights up when it senses the handoff. It actually records the handoff, too, so Siemens knows how many times the baton has been passed.
Dr. Gregory Sorensen is a neuroradiologist who did cancer research before he became CEO of Siemens Healthcare North America. He explained it like this, "In the same way that runners hand a baton to one another in a relay race, researchers and doctors have handed what they know about the disease to other researchers and other doctors to help them Stand up to Cancer. Significant progress has been made in the fight against cancer and through 'The Baton Pass' we can let people know there is a reason for hope."
This week at CHOP, where I was treated, I helped pass the baton as it started its journey, traveling across the country, passing from patients to survivors, to doctors, to scientists, to health care workers, families and anyone who has been affected by cancer to show how we are all united - with hope -- in the fight against this disease. And "The Baton Pass" is more than a symbol. Siemens has pledged to donate one dollar for cancer research every time the baton is passed, up to a total of $1 million. The money will go the Stand Up To Cancer, the cancer-fighting group that brings together Hollywood and other celebrities to help raise money and awareness to battle against cancer.
Stand Up To Cancer works with The American Association for Cancer Research to ensure that the money goes to top researchers who work in "dream teams" representing best doctors and researchers from hospitals, universities, cancer centers and other institutions across the country working together like they never did before.
It was painstaking scientific research and controlled clinical trials that produced my treatment. All that costs money. When we passed the baton at CHOP this week, Dr. John Maris who is one of CHOP's top cancer experts and co-leads the Stand Up To Cancer- St. Baldrick's Pediatric Cancer Dream Team put it this way, "We are at an incredible place where there have never been more discoveries about cancer; we're making discoveries all the time now. The bottleneck is in translating those discoveries to the clinic. And developing a cutting-edge therapy for a child in dire need of treatment, that is an expensive proposition. The amount of money that it takes to go from an idea to a cure is substantial."
Stand Up to Cancer aims to break that bottleneck and get new treatments out to patients as soon as possible and save lives - like mine.
Maybe my experience has made me an incurable optimist, but I truly believe we are going to beat cancer in my lifetime. I want to share the hope. But beating cancer depends on research, and that takes money.
The work that the Stand Up To Cancer Dream Teams do is so important and they are making incredible progress. "The Baton Pass" is an easy way for everyone to get involved in supporting that research. You don't even have to touch it physically. You can do it virtually! Siemens will count passes through its Facebook page. You can put in some of your own money if you want, but you don't have to.
I will never have a completely normal life because I will always have fragile bones, backaches, nausea, etc., from the treatments. But I am incredibly lucky to be alive and I am grateful for that every day.
Because of the amazing work of scientists, we have real hope like we never had before. I'm thrilled to see so many people and companies joining in the cause. We're going to get through this, everyone working together, until we cure cancer. So please get on board, and pass the baton! You can do it on Facebook (https://www.facebook.com/TheBatonPass) and there's also a facebook app (https://apps.facebook.com/TheBatonPass/).