Providing Support for Children and Their Families
As we all are painfully aware, cancer can devastate a family. But as many of us have seen, those who have suffered through a bout with cancer or lost a loved one to cancer often respond by trying to help others like them.
Russ Sanford and his family fall into this group. In June 2002, 10-year-old Joe Sanford died after a courageous, 3-year fight with medulloblastoma, a form of brain cancer that typically afflicts children and young adults. The Sanford family underwent the roller-coaster ride that all families do when one member battles cancer - treatment successes and setbacks, periods of calm, and periods of mania.
In the last months of his battle with cancer, Joe was enrolled in a clinical trial conducted at the National Institutes of Health. Russ and his wife, Betsy, responded to their son's odyssey by launching the Joseph Patrick Sanford Memorial Foundation, which raises money and donates acts of service and funds to help meet the needs of suffering children and also gives to organizations that touched Joe's life during his battle with cancer.
The proceeds from the Foundation's first annual "Joe's Ride" fundraising event were donated to the Children's Inn on the NIH campus. The Inn is a place where children participating in NIH clinical trials and their families can stay when they need to be on campus for treatments over an extended period. Patients being treated in NCI trials are the largest majority of Inn visitors, accounting for approximately 36 percent of annual visits.
A new wing of the Children's Inn was officially opened during a touching ceremony last week. The new wing, which will house 22 additional families, was desperately needed. In 2003, 400 families' requests to stay at the Inn - instead of at nearby hotels, which is often their only resort - had to be denied. There simply wasn't enough room.
With this new addition, at any one time 59 families can call the Inn their home - for a short while at least. The Inn really is a "home away from home" for patients and their families, providing comfortable accommodations, fun events, and the opportunity for families to interact, commiserate, and lean on one another. The Inn is a model for caring for the whole person - a recognition that quality care extends well beyond the hospital or clinic.
When you're embroiled in the enterprise of cancer research - investigating the genetic and molecular origins of cancer, using advanced technologies to search for biomarkers of disease, performing secondary analysis on large clinical trial results to look for interesting trends - it's easy to lose sight of the patients and families who are affected by this disease. But compassion is and must continue to be as much a part of our culture as intellectual excellence is.
At NCI, we are truly committed to palliative care and quality-of-life issues. We are sponsoring research into a number of supportive care areas, including pain management, depression, nutrition, and stress management, and others. The bottom line is that when somebody is diagnosed with cancer, they don't abdicate their right to a sense of normalcy and comfort.
The second annual Joe's Ride is scheduled for this coming weekend. Proceeds from events like this and foundations like the one established by Joe's family, helped make this new wing possible. And these same patients and families staying at the Inn while participating in a clinical trial are benefiting children now and in the future by helping to advance clinical research. That is a true circle of life.
Dr. Andrew C. von Eschenbach