Thursday, March 6, 2008

Another Father's Lament

Thanks to Angus for noting this piece on his weblog.

What follows are not my words--and I don't agree with some of the implications here--but Darren Gowen lost his daughter to leukemia in 1999, and his pain is clear.

So. An admonition: pain into action.

"Lessons Learned"
By Darren Gowen
Published September 8, 1999 in the Free Lance Star, Fredericksburg, Virginia

IF I SEE, HEAR, OR READ one more thing about breast cancer, I'm just gonna throw up," she said as we stood at the microwave in the visitors' lounge watching chicken reheat. It was late in the evening and quiet on the hospital's pediatric inpatient floor.

We were sharing a respite from our children's cancer treatments. Her son had osteosarcoma, a bone cancer. Evidence of his four-year battle included a missing leg and a shiny bald head, the result of surgery and chemotherapy to counter the cancer's every move.

My daughter had leukemia, a condition that had relapsed following a bone-marrow transplant. Bald too, she had difficulty walking, and had recently been informed that her treatment had failed and that she would not live to see the millennium.

If given a choice, parents would gladly choose for themselves to have cancer over their children. But cancer never gives them such a choice.

I've been thinking about the woman's words. The television and print-media blitz on breast and prostate cancer is a mixed blessing. The focus on detecting such cancers provides a needed community service to the extent it motivates individuals to contribute time and money to cancer organizations. Also, breast and prostate cancer are relatively common among adults. Over the last decade, for instance, the incidence of breast cancer ranged between 76 and 123 per 100,000 women. The mortality rate was 27 per 100,000.

But cancer is entangled in politics and corporate greed. Government agency budgeteers take advantage of politicians' pandering by spiking their proposals with much-needed requests for cancer research funds. Meanwhile, to boost profits, drug companies invest heavily in advertising and lobbying to influence the political funding process.

Like the mother of the boy with osteosarcoma, I do not appreciate this frenzy over adult cancers. I acknowledge bias, having recently lost a child to leukemia. Yet I wonder: To what extent does the emphasis on breast and prostate cancer hamper the detection and treatment of other cancers? Do the extra dollars going toward breast- and prostate-cancer research pull away dollars that might otherwise fund studies of other cancers?

The National Cancer Institute's proposed budget for the coming fiscal year indicates a clear emphasis on breast and prostate cancer. At the institute's Web site, I ran a word count on "breast" and "prostate" and got a large total. However, "child," "pediatric," "leukemia," or any other term connected to childhood cancer only sporadically showed up in the mammoth site.

The incidence of childhood cancer is 14.1 per 100,000. Although the mortality rate for children with cancer has decreased by 42 percent in the last two decades, cancer's incidence has increased 10 percent. For black children, the increase is 14 percent.

Particular childhood cancer rates have seen higher increases: soft tissue sarcoma and brain cancer, 25 percent; acute lymphoblastic leukemia, 20 percent. Though it appears that the incidence and mortality rates for childhood cancer are small next to cancers among adults, if analyzed in terms of lost years of life, childhood cancer is much more devastating to society.

The average age of mortality for adults with cancer is 50, which represents a loss of more than 20 years of life per adult. In contrast, a child who dies from cancer loses 60 to 65 years of life.

This incalculable loss, however, is not immutable if we understand that research on childhood cancer is often successfully applied to adult cancer. Cancer scientist John Lazslo calls childhood leukemia a "stalking horse for other cancers." When childhood leukemia is cured, he says, cures for the rest will soon follow.

The first cancer clinical trials involved children with leukemia. Children with cancer are usually otherwise healthy and can tolerate greater drug intensity than adults. Each child that has participated in a clinical trial to test a new treatment but succumbed to cancer has bestowed a precious gift--improved treatments--on those, including adults, later diagnosed with cancer.

Much of the early development of bone-marrow transplantation targeted children with immune-deficiency diseases and other causes of bone-marrow failure. Since then, both adults and children with leukemia and other cancers have received bone-marrow transplants.

Some important discoveries about the molecular biology of cancer have originated in pediatric studies. The study of the rare pediatric eye cancer retinoblastoma led to the landmark discovery of the first human cancer gene. The absence of this particular tumor-suppressor gene leads to several adult cancers--including prostate cancer.

The first applications of gene therapy in children with brain cancer and neuroblastoma, a cancer of the central nervous system, are under way at a children's hospital, and eventually will have adult applications.

Our daughter participated in the first comprehensive trial of an immunotoxin. The side effects from the experimental therapy were devastating, and the eventual result was not positive. But we know of several children who are alive today because of it. Treatments using immunotoxins will soon help adults with cancer and AIDS.

Children with cancer have given a tremendous gift to adults with cancer. Are we adults so generous?"


Source: http://home.att.net/~gowfam/lessons.htm

No comments: