Neuroblastoma is a cancer of immature cells of the sympathetic nervous system arising in babies and children. It is a hideously painful disease - at diagnosis, most children have widely disseminated disease, including metastases to bone including the skull, marrow, orbits, liver, distant lymph nodes, skin, and brain. If diagnosed in children over age 2, or if the unique microscopic and genetic characteristics of the tumor are "unfavorable", stage IV disease has a very poor overall survival, and children go through torturous treatment regimens - including chemotherapy at dosages that would likely kill most adults - in an attempt to prolong their survival. There's basically one shot at controlling the disease; if a child doesn't achieve "No Evidence of Disease" (NED) status including resolution of bone marrow metastasis after frontline therapy, or if the disease returns after treatment, long term survival is essentially nil and treatment goals shift to chasing the disease, attempting to snuff it out with new or experimental treatments as new metastases pop up all over the body and palliating the severe pain that obviously arises from a tumor of neuronal origin. Here is a grim, grim
article outlining the horrifying pain associated with end-stage neuroblastoma, including the highest dose of opiate analgesia I have ever encountered - 3000 ug/hr + 250 ug bolus dose fentanyl per 5 minutes then 733 ug/hr sufentanil, neither of which controlled the pain of a dying FIVE YEAR OLD who weighed 18 kg (
@LonesomeDud have you ever run into a higher dose in the wild?)
This poor girl was first diagnosed when she was Gracie's age, which is a bad prognostic indicator in neuroblastoma, and relapsed multiple times before dying with disseminated disease at age 13. Basically her entire life was spent in various forms of brutal treatment, all of which ultimately proved futile anyway. In the end, she also developed secondary leukemia (cancer of the blood) from the high dose chemotherapy she received. The drugs used in childhood cancer treatment have not substantially changed since the 1950s, and you don't even need two hands to count the number of new and unique drugs that have been approved for use in the pediatric population since then. The state of funding for pediatric cancer research For every dollar of the millions donated to the American Cancer Society every year, FOUR CENTS are designated for childhood cancer research. In fact, the research behind several of the handful of new treatments that have been developed over the past decade or so has been funded in part by groups of parents whose kids have, or have died from, neuroblastoma. Parents should not have to fund a lab so that their kid doesn't die. This is something that all Americans, regardless of politics or religion, should be incredibly outraged about, but I have sperged enough.