LESSONS LEARNED

Oh lessons learned and they sure run deep
they don't go away and they're sure not cheap
Oh there's no way around it
this world turns . . .
on lessons learned.

July 31, 1999: It's been over two months since we lost Doris to leukemia. I am still unable to write about how we are dealing with her loss. While it is now possible to focus on other things in our lives, the backdrop of our consciousness remains on Doris.

I have written some other things I wish to share with you. This link is called "Lessons Learned" and I intend to convey those lessons in time. Meanwhile, enjoy the following essays. Darren

***************

Eight year-old Joe had AML and underwent a bone marrow transplant shortly after our 12 year-old daughter Doris underwent the transplant procedure for ALL.

Joe admired Doris like high school freshmen admire seniors. Several treatment protocols ahead of him, she continually encouraged him to keep his chin up during his fight against a deadly disease. She'd smile at him and say, "Hang in there Joe. Everything'll be okay."

During Joe's consultation with the transplant physician, he saw Doris' lung shields in the radiology unit. He and Doris exchanged a wave and a smile as he walked by her room during a tour of the transplant unit.

As the consultation ended, Joe smiled and told his transplant physician, "If Doris can do it, I can do it. I'm not afraid."

Six months later Doris' leukemia recurred and she died. Joe's parents couldn't bring themselves to tell him of her passing. They didn't want to upset their 8 year-old son, who was still recovering from a successful bone marrow transplant.

Things were compounded when Joe began telling his mother that a girl appeared to him in his dreams. Every night! Joe told his mother, "The girl keeps telling me that everything will be okay."

Eventually, a favorite nurse broke Joe the news of Doris' death. He continues to do well by the way.

My wife, Michelle, and I wondered: Was the girl in Joe's dreams Doris? If it was Doris, what had she meant? Did she mean that Joe will survive, or that death is nothing to fear. We suspect she meant that either way things turn out for Joe, everything'll be okay.

***************

When childhood cancer gets short shrift, kids and adults suffer

Comment

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?

***************

December 1999

Heidi, our 5-year-old goldilocks, is learning letters of the alphabet in her Kindergarten class. Each week brings fascinating new words that begin with each new letter that is learned. It’s exciting to watch Heidi’s eye’s sparkle as a single letter unlocks another door to a world beyond her five senses.

The letter C unlocks a critical door for our family. Heidi’s buddy, her older sister, our oldest child Doris, died of cancer about seven months ago. Neither I, Heidi, her surviving siblings, nor her mother, can get Doris off our minds. Not that we want to. It hurts to think of Doris and to recall the repeated heartbreaks in her final year of life. Most of all, it hurts us to be reminded of her absence.

The letter C begins other thought provoking words. What causes cancer in children? Most childhood cancers are acquired (not inherited) by some unknown mechanism. There are speculations about what causes cancer in children, but nothing has been proven conclusive.

With adults, long term environmental exposure to pollution, poor diet, and other lifestyle habits are associated with many types of cancer. But children haven’t been around long enough to become environmentally exposed to the extent that adults are exposed. Or have they?

In a June 1999 press release, the National Institute of Environmental Health Sciences concluded that evidence is weak for a cancer risk from the electric and magnetic fields (EMF) around power lines. EMF’s refer to low frequency electric and magnetic fields that surround both the big power lines that distribute power and the smaller but closer electric lines in homes and appliances. Sections of the report say that EMF exposure cannot be recognized as entirely safe and that there is evidence of a small health hazard from exposure to EMF’s. For some methods of measuring exposure, the "strongest evidence" for increased risk of health effects comes from associations observed with childhood leukemia.

In a recent study by the Minnesota-based Hughes Institute, researchers applied EMFs to human cells and observed those cells begin to replicate pathologically, e.g., cancer. This is in contrast to other studies where researchers have not been able to trigger this cellular catastrophe by bombarding cows, pigs, monkeys, and mice with EMF’s of a thousandfold stronger than the EMF’s generated by overhead power-lines.

Part of this research on EMF’s exposure in children involved household surveys that showed a weak association between the incidence of childhood leukemia and use of hair-dryers. I interpret this to mean that children with leukemia were slightly more likely than their peers to have had their mothers blow-dry their hair for two minutes each morning before school.

When I read such mind numbing research, I get the feeling that those who conducted it are not particularly inspired. Maybe having a child with cancer would make them more inquisitive. It’s no intellectual stretch to know that if one wants to find out if a true association exists between hair-dryers and cancer, survey hair stylists for God sakes!

We have an electric heater that Doris used in her bedroom to stay warm prior to her leukemia diagnosis. Ironically, she used the heater again after her bone marrow transplant just before the leukemia recurred. Yet the literature says that a person must be in close proximity to an electromagnetic wave-field generating device to receive a harmful exposure. Doris always kept the heater 8 feet or so away from her bed, so it must be a coincidence.

I haven’t trashed the heater because I want to get it tested to measure its electromagnetic emissions. Another part of me says, "It won’t bring her back. Move on buddy."

Perhaps researchers are asking the wrong question about what causes childhood cancer. Think about the complexity of your personal computer and how often errors occur, requiring a reboot. Living organisms are much more complex by comparison. Given the complexity of human physiology, shouldn’t we be asking, "Why don’t more kids get cancer?"

What is the cure for childhood cancer? This is a tough concept for a dad. To kids, dads are good to have around to fix things. I can fix a flat bicycle tire, help with difficult homework, give advice on dealing with a neighborhood bully, or say "yes" when mom says, "no." But I was helpless in fixing my daughter’s cancer. It was the same feeling I get when getting lost on a family road trip, refusing to stop and ask for directions, compulsively turning at every intersection, in blind pursuit of an escape from a suburban labyrinth.

With leukemia, though, I asked many questions in search of answers. I obsessively read medical journals, canvassed the Internet, and grilled doctors at every opportunity. My feelings of helplessness prevailed because there is no cure for childhood cancer. I dislike the ease with which the word cure is used by the media. I’m reluctant to use the word cure, even for persons with long-term remissions. There’s no certainty that cancer won’t return. When scientists can say with certainty that the cancer will not return, then I’ll accept the use of this term.

Perhaps researchers are asking the wrong question yet again. If it’s not known precisely what turns on the switch to the cellular catastrophe called cancer, what is it that turns it off? In other words, "Why do some people survive cancer?" Cancer recurs because cancer cells develop resistance to cancer treatments, much like viruses become resistant to antibiotics. Maybe it will be easier to cure cancer once we’re able to cure the common cold.

There are children who recently have died of cancer with names beginning with the letter-C: Christopher, age four, and Constance, age six. Since no words begin with any letters of the alphabet that describe or interpret the loss of a child to cancer, all the more crucial is the pursuit of learning that which we know we don’t know: cause and cure.

Like all letters of the alphabet, the letter C has infinite possibilities. It’s curious how once that door is opened, C-words commence to cultivate a string of other thought provoking C-words which cascade into sentences.

I’m confident that someday the true path to the cause and cure of childhood cancer will be discovered by opening the right door. But who will open that door? It might be, years from now, a captivating kindergartner who is now learning the letters of the alphabet, or much sooner from the captivated parent of one.