The chemotherapy almost killed Thomas. The Navarros refused further treatments, only to find that the FDA wouldn’t permit Thomas to receive the gentler experimental treatment unless he had radiation too. In frustration, the Navarros went to Congress, as other patients have done, to plead for permission to use new drugs not yet approved by the FDA. After a year and a half of fighting, when Thomas was expected to live for only two more weeks, the FDA finally permitted him to have a “compassionate use” exemption.
By that time, Thomas had developed new tumors, called leptomeningial-sarcoma, from his initial chemotherapy. Nevertheless, the experimental treatment kept Thomas going for several more months. How much longer might Thomas have lived if we had honored his parents’ choice in the earlier stages of his disease?
—Dr. Mary J. Ruwart, Healing Our World