The story was gripping, it was compelling, it tore at my heartstrings. A fifteen year-old girl from Portland, Oregon, stricken with one of the rarest forms of pediatric cancer: Alveolar Soft Part Sarcoma, ASPS. It was the story of a young woman whose cancer was unresponsive to traditional chemotherapy and who had endured countless operations to control spread of the cancer. It was the story of a young woman who, rejected from clinical trials due to her not yet being the mandatory 18 years-of-age, was appealing to Big Pharma for a special exemption to try the one drug which could help beat her cancer, an exception called "Compassionate Use." And it was the story of a young woman who should have been fully enjoying her childhood, not suffering, not in pain, not worrying, not having to face the fear of cancer with it's so many knowns and unknowns.
After reading the story, I returned to the original Tweet and hit the Retweet button. With that press of the button, for the past half-year plus, the Traller's mission, their crusade, became part of me: affecting me, entering my thoughts, becoming part of my prayers, bringing tears to my eyes.
The ensuing months were long. Filled with trepidation. Filled with the ever-present feeling that the clock was ticking. But always filled with a sense of optimism and hope that one of the pharmaceutical companies would step up and Nathalie and the Traller Family's prayers would be answered - that Nathalie would be given the right to try the experimental drug - no strings attached, no expectations, quite simply access to a very promising, last-resort medication.
The months, as they flew by, saw many developments. Here are but a few:
- A nationally syndicated piece by CNN featuring Nathalie's story, "Dying Patients Denied Drugs."
A hard-hitting appearance on Portland Oregon's KATU News: "Nathalie's Crusade: Family Fights for Cancer Treatment"
Vickie Traller's (Nathalie's Mother) 24-hour marathon, walk of love to bring attention to her daughter's plight
-And most recently a series of national stories and appearances including Nathalie's father Nathan Traller on CNBC: "Compassionate Use: Nathalie's Story"
It was thus with tears in my eyes and a sense of overwhelming relief for a family who has become part of my life that I awoke this past Friday morning to the blessed news in the form of Tweets on Twitter from members of "Team Nathalie" - news that one of the manufacturers of PD1, Genentech had said "YES!" They had agreed to provide Nathalie with Compassionate Use access to the drug, presently in late-stage clinical trials, which holds the promise of revving up her immune-system to defeat her cancer.
With this victory comes the beginning of a new fight: Nathalie's renewed battle against ASPS cancer.
May thoughts, prayers, love, and the Grace of God, continue to follow Nathalie and the Traller Family. Always...