When President Nixon declared war on cancer, I was a college student planning my future. Cancer was the furthest thing from my mind.  It was 1971 and the President signed the National Cancer Act into law, declaring, “I hope in the years ahead we will look back on this action today as the most significant action taken during my Administration.” 

 I never would have imagined that 25 years later, I would bear witness to my own 8-year-old daughter’s battle against cancer.

In 1998, my daughter Caroline developed a pain in her leg.  Her Dad and I took her to the doctor, who told us it was simply growing pains, perhaps shin splints.  When the pain didn’t go away and she developed a limp, we took her back to the doctor insistent on an answer.  Eventually, x-rays revealed something seriously wrong.  After weeks of misdiagnosis and confusion, to our horror, Caroline was finally diagnosed with neuroblastoma. 

Treatments begun with a full compliment of surgeries, chemotherapy, radiation, monoclonal antibodies and or course the endless transfusions.  In the midst of all of this chaos, we managed to celebrate Halloween.  That year, Caroline was GI Jane complete with camouflage fatigues and a military cut, compliments of chemotherapy.  Her protocol schedule also allowed us to “break-out” for Thanksgiving and Christmas.  We even took off for a ski trip to Utah where Caroline won a medal for her skills on the slopes.

In June 1999, Caroline was in clinical remission.  One day, our family was in an activity room in the hospital talking with other kids and their families about the lack of funding for pediatric cancer research.  “Just think how many kids we could make better if we had a million dollars,” Caroline said.  Talk of raising money to find a cure spread and was the talk of the activity room for weeks.  Caroline was always a big dreamer, but her words that day were prophetic. 

By September, Caroline was excited to go back to school, but on the first day, her motor skills and speech began to fail.  Her cancer was back, this time in her spine and brain.  Eight days later, Caroline died at home with me and her Dad by her side. 

Hope Street Kids: Picking Up the Gauntlet

Caroline’s death was the impetus for the development of Hope Street Kids, a non-profit program of CureSearch for Children’s Cancer that her father and I founded in her memory.  The mission of Hope Street Kids is simple – to eliminate childhood cancer through pioneering research, advocacy and education.  We have transformed Caroline’s prophetic words into reality. 

More than $10 million has been raised enabling us to award 92 grants and fellowships to more than 36 leading pediatric cancer institutions across the United States. I believe every dollar raised is one step closer to the day when all children are free of this disease.

Hope Street Kids was spurred by my own special interest as a mother of a heroic little girl.  But my position as a member of the U.S. House of Representatives also gave me a unique opportunity to make a difference.

Resources for Family Members

It was a great honor and privilege to be a member of Congress, working to improve our country and the lives of our children and families.  Over the years, my journey as a mother and a member of Congress has challenged me in ways I never could have imagined.  It has tested my strength, my sanity and my faith.  However, working to advance the interests of childhood cancer patients and fight for a cure remains a labor of love and passion.  For me, it’s been the highlight of my career and tremendously rewarding to work with my Congressional colleagues on both sides of the aisle and the cancer advocacy community to make a difference.

During my 16 year tenure in Congress, a highlight of my career was the introduction and unanimous passing by both the House and Senate of the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008. My colleagues named this bill in honor and memory of my daughter Caroline and the thousands of children diagnosed with cancer each year. 

On July 31, 2008, the President signed into law H.R. 1553, the Caroline Pryce Walker Conquer Childhood Cancer Act, landmark legislation to dramatically increase federal investment in childhood cancer research and awareness. The bill was an historic step in the fight to eradicate pediatric cancer and includes three provisions:  1) authorizing of $30 million annually over five years to hasten advancements in pediatric cancer research. 2) establishing of a comprehensive national database on childhood cancers to help researchers detect trends in the disease; and 3) providing educational and informational services to patients and families to ensure they have access to appropriate clinical treatment and the array of vital support services.  

To date, provisions #2 and #3 have received funding in this last appropriation cycle.  Three million dollars were appropriated in the Labor, Health and Human Services appropriation for the Centers for Disease Control (CDC) for a pediatric cancer registry. The CDC is instructed to report to Congress how they plan to implement this registry.  One million dollars were appropriated in the Office of the Secretary of the Department of Health and Human Services (HHS) for informational services to patients and families. HHS placed the responsibility for the call for letters of intent at the National Cancer Institute (NCI.)  NCI in July 2010 announced a request for proposals and plan to review and award the first portion of the appropriated funds this Fall.

Provision #1 related to research has not been funded yet.  The pediatric cancer community continues to encourage Congress to include this in the 2011 appropriation cycle. We believe that this funding is essential to provide effective, widespread and speedy research to help eradicate childhood cancers.

The Reality: Nearly every single person in this world has been touched by cancer is painfully sobering.  And in this country, when something terrible affects many, we all have a stake in reaching a solution.  We rally to rebuild after manmade and natural disasters. We stand tall in the face of terror and hate.  I have been blessed to witness bringing that same spirit to the eradication of childhood cancers. 

The best and brightest scientists and researchers work hard each day to develop new medicines and therapies to help fight cancer.  We have the most experienced doctors in the world pushing the research agenda and recommending proper protocols, treatments and surgeries.  Caring and talented oncology nurses work on the front lines caring for sick patients.  We have an incredible array of organizations and patient advocates armed with knowledge dedicated to raising awareness about cancer.  Most importantly, cancer survivors themselves are a testament to the inestimable value of research.

While great progress has been made in the diagnosis and treatment of childhood cancer, it continues to threaten the lives of many children and adolescents. Childhood cancer is the #1 disease killer of children. More children die of cancer than of any other disease, including asthma, diabetes, cystic fibrosis, congenital anomalies and AIDS, combined. One of every 300 persons in the United States will develop cancer before their 20^th birthday.  The median age of diagnosis for childhood cancer is six years of age. In total, more 13,500 children are newly diagnosed with cancer each year and 40,000 children are in treatment.

 Childhood cancer does not discriminate. Childhood cancer cuts across all social, economic and ethnic differences. Despite many advances in cure rates, we are still losing a third of diagnosed children to this disease.

 It is my fervent desire that no child will ever fall victim to cancer. One thing that I have learned through my experience is that through collective determination as parents, friends and advocates that our goal – eradicating cancer – is in sight.  Cancer is no longer the mystery it once was.  The scientific and medical communities continue to crash through barriers, to unlock cancer’s secrets, and to cut this opponent down to size.  Fifty years ago, a childhood cancer diagnosis was a virtual death sentence; today, 78% of children with cancer overall are cured. Tremendous progress has been made on the war on cancer, however our goal is a 100% cure rate.  One child lost to cancer is one too many.

Hope Through Research

With our nation’s resources, our scientists, our committed doctors and oncologists, and our inherent and insuppressible fighting spirit we can and should do more to defeat cancer, and put an end to so much suffering.

 Now more than ever we have the momentum and a chance to stand together, and draw strength from each other.  Like thousands of parents each year, I became an involuntary member of the sad club of pediatric cancer, but through it, we are inspired by the courage of those who are working to fight this horrible disease, and encouraged by the power and strength in our numbers to effect change and make a difference. 

Let us harness this spirit of optimism and resolve, and leave an historic impact in a war on cancer that has turned so many lives into casualties.

 Though retired from Congress, I don’t intend to stop my efforts to fight this dreadful disease.  A mom never stops. Through our own pediatric cancer research program, Hope Street Kids, and as a Board of Trustees member for CureSearch for Children’s Cancer and an outspoken advocate, I remain very active in this war.

 Each of us has a journey and often it is filled with challenges and sometimes painful experiences that change our life forever. Through our challenges, we become stronger, determined and inspired to make a difference.  Now more than ever, I am filled with optimism and great hope.  I truly do believe that we are marching forward in this battle against cancer and we will one day win it for good.  With each step, we are moving toward an ultimate goal of a generation free of cancer and together, we will find a cure and spare others so much suffering.

I am honored to have been Caroline’s mom.  Thank you, Caroline Pryce Walker for inspiring me and so many to make a difference in the lives of thousands of children diagnosed each year.

Please visit www.curesearch.org to find out how you can make a difference today.