By David Fajgenbaum
On October 26, 2004, I lost my mother to brain cancer. Her diagnosis, which had come just weeks before I began my freshman year at Georgetown University, and her months of treatment revealed for me the extraordinary capabilities and deficiencies of cancer research. On a more human scale, the fifteen months leading up to my mother's death were a testament to the strength of her spirit and the courage with which she - and many like her - face death from cancer.
At a time when the United States Congress is considering how to fund the National Institutes of Health (NIH) - and more specifically, the National Cancer Institute (NCI) - I hope that cancer patients and their families will let their voices be heard. While it is true that progress in cancer research has been, at times, agonizingly slow in coming, it is also true that the National Cancer Institute is pushing hard across a variety of fronts to maximize clinical and practical applications for new therapies. Some of these therapies, including ones that were made available to my mother, are promising. Others are still in the throes of early development. Without funding, there will be a shut-down of new drugs and other interventions that can prolong life and ease suffering.
I was at my mother's bedside following her brain surgery at Duke University Medical Center. Although she had been diagnosed with a Grade IV (most serious) Glioblastoma Multiform, doctors at Duke hoped to employ innovative surgical techniques and a new regimen of chemotherapy to extend her life. We worried that the surgery would compromise her mental functioning. But, I knew when I saw her in intensive care and when, over the beeps of the monitors, she asked how I was doing, that my mother was intact. My mother, also my best friend, was most concerned that I remain at Georgetown - and that I pursue my studies. Throughout the course of her treatment, my mother always focused on my work, my achievements and the wonderful care she was receiving from my father and my two sisters who left prestigious jobs in Manhattan to be at her bedside.
Cancer researchers are well aware that brain cancer remains one of the most difficult and resistant of cancers to treat. In the years since such well-known Americans as political chieftain Lee Atwater, businessman Reggie Lewis, and lawyer Johnnie Cochran have died of brain tumors, there has been much frustration. There have also been the first signs of hope. New radiological techniques are permitting oncologists to better attack cancer cells; progress arrived at through the Human Genome project and other groundbreaking research is opening the doors to the possibility of marshaling an individual's own immune-fighting cells to tackle tumor cells and "cancer vaccines" equipped with such cells are being re-introduced into the bloodstream of cancer patients. Lives are being extended.
For my mother, who was able to continue fighting for 15 months, her favorite thing to say was, "I'm so lucky." Despite an exploratory craniotomy, radiation treatment and chemotherapy, having her family with her was all she needed to believe that she was still the luckiest person in the world. This does not mean that she was not suffering. She was. But she rose above the pain and her treatment gave her reason to hope.
One week before my sophomore year began, we found out that my mother's tumor had grown back larger than before and in an inoperable location. Again, my mother insisted that I return to school. Hesitantly, I agreed but only if I could return home every weekend. My Mom would spend Monday through Friday saving up her energy for those precious moments that she knew lay ahead. One afternoon, my sisters told my Mom how special it was for them to have been able to move back to spend the last year with her. She smiled, reached up to touch their faces and said, "Best year ever."
Looking back on the last two years of her life, I know that my mother remained the most beautiful, compassionate and humble person in her battle with brain cancer. Her serenity and indominatibility proved that the greatest test of character is not how one responds to happiness and the promise of life - but to adversity and the inevitability of death. As she neared the end of her life, my mother suffered through treatments that have proven to have little or no effect whatsoever on brain cancer. And yet, in spite of the fact that her treatments were not productive, she was willing - even passionate - about trying anything that could offer her the possibility of continuing with us.
Just before I returned to school the last time before she died, I told my mother how much I loved her. For the first time since her struggle began, I saw a different look in her eyes. She responded by saying, "One day I am not going to be here to take care of you." She was not scared of dying - she was worried about how I would be without her. At that moment, I began to think about the millions of terminally ill parents that worry about their children. I told my Mom, "I am going to be OK, and I'm going to help other children like myself, in your honor." She smiled and spoke to me for the last time and said, "Unconditional love."
Unconditional love has been the stepstone for the organization that I founded at Georgetown. Students of Ailing Mothers and Fathers (AMF) Network exists to help students cope with the psychological, spiritual, social and academic difficulties associated with having to pursue studies while a parent lies sick or dying. The letters AMF are also an acronym for my mother's name, Anne Marie Fajgenbaum. AMF, which began as a support group for some 10 Georgetown students with sick or deceased parents, is growing quickly. The organization now has 40 "members" supported by faculty "Angels" and conducts community outreach honoring lost loved ones through a service group of more than 350 Georgetown students. And, because of the thousands of young people in need of support everywhere in the U.S., the AMF initiative is networking now to campuses across the country.
While AMF performs a critical function for students like myself who have had to cope with the unbearable pain of losing a parent, we cannot lose sight of the vital importance of research. Those of us who have had to bear the unbearable - the loss of a parent - have learned some coping mechanisms. But, we would trade the shared sense of loss in an instant for meaningful returns on research investment. It is these investments - investments that I hope the Congress will protect and preserve- that offer the best hope for a future free of cancer and the ravages this disease conveys.
David Fajgenbaum is a third-year student at Georgetown University and is Founder and Executive Director of Students of AMF. He also serves as a Special Youth Advisor to Friends of Cancer Research, a national non-profit headquartered in Washington, focused on education and research funding awareness.
