Most families have been touched by cancer. Touched is such a gentle word, maybe it's the wrong word because cancer and it's treatment is anything but gentle. Steamrolled, bashed, sucker-punched, those words are more appropriate for anyone who's lived it, . Yet, even though the cancer experience is almost, dare I say, common, many people are shocked when they learn that kids get cancer. It seems incomprehensible that a baby or a 1st grader would have cancer. It's an ugly truth that most would prefer to not contemplate.
But it's real. We are bombarded with cancer prevention messages...Don't smoke, avoid the sun, lose weight, to
name just a few. Millions of dollars have been spent on research to find the reason for adult cancers, and in some cases, we now know some of those reasons, and there are abundant messages from media and your own doctor on what you can do to avoid some of the causes of cancer. But what about a child's cancer? There is much less known about the causes of childhood cancers. And nothing to be done to prevent cancer in kids. Therefore the focus in childhood cancer is research, because only clinical research can save the littlest victims of the scourge we know as cancer.
Even the very nature of childhood cancer is different than adult cancers. Children do not get lung cancer, or colon cancer, but they do get rhabdomyosarcoma and neuroblastoma. These are just two of more than 10 different childhood cancers that occur in cells that are growing and changing as the child grows. No age is spared. Newborns to teenagers can be diagnosed with cancer. The average age of a child diagnosed with cancer is 6. It's the #1 cause of disease death in kids. The bad news is that over 13,000 children and adolescents learn they have cancer every year. The good news is that the overall survival rate is now 78%. That good news is brought to you by the pediatric research community and the legions of children and their
families who have agreed to participate in research. The good news is tempered by the fact that some types of childhood cancer have 0% survival rate. And that is why research is critical.
The pediatric research community is unique in the world of oncology. In the adult cancer world, there are innumerable groups and alliances doing cancer research: drug companies, cooperative groups, university teaching hospitals, individual scientists. There are a number of ways their results are shared with other
researchers, but it's a patchwork system. In pediatric cancer, there is a single cooperative group, CureSearch-The Children's Oncology Group (COG), that includes over 200 hospitals and treats 90% of kids with cancer in the US. Research is done in other facilities but the scientists at those facilities are usually members of the cooperative group so information sharing is more consistent. There are notable local research efforts, such as
Dana-Farber's and St. Jude's, and they serve important roles in the research system. But most childhood cancers are rare enough that only through a cooperative group effort, can meaningful research be accomplished. What's a cooperative group? That means that a small clinic in Wisconsin can offer the same research study as a large children's hospital in Miami. The largest studies have over 5,000 children enrolled from all over the US and several foreign countries. That kind of research is only possible with a cooperative
Another way that childhood cancer is unique is the involvement of the entire family. Treatment can last over 3 years for some types of leukemia. One parent frequently is forced to quit their job to stay with the child during numerous hospitalizations. The other parent juggles work and the responsibilities of other children. Single
parents struggle to cover all the bases, while trying to stay employed so that the child has health insurance. Siblings are shuttled to grandparents, friends and neighbors. No one in a family impacted by childhood cancer emerges unscathed by the experience.
Childhood cancer occurs randomly, regularly and spares no ethnic group, socio-economic class or geographic region. On average, 36 kids are diagnosed every day. Overall, 78% of kids will survive their cancer. But that survival carries a high cost. Out of every 10 survivors, 7 of them will live the rest of their lives with at least
one long term health problem and 3 of those 7 will be left with severe or life-threatening problems, like lung damage, congestive heart failure or mental retardation. Efforts are being made to lessen the toxic effects
of treatment, but more research is needed.
The subject of research keeps repeating because it truly is the only solution to childhood cancer. Who funds
pediatric cancer research? Mostly it's the federal government through the National Cancer Institute (NCI), which is a division of the National Institute of Health (NIH). In a recent year, the NCI budget was $4.8 Billion. The total spent on childhood cancer, was $173 Million. That equals only 3% of the NCI budget. For comparison, breast cancer research was government funded at $843 Million, plus $256 Million from Komen and other breast cancer organizations , equalling over $1 Billion for breast cancer research. There is no question that the success of the pink ribbon campaign has led to funding that has resulted in improved survival of breast cancer patients. The average survival rate for breast cancer is now near 90%. The success of the breast cancer advocates is a model for others to follow, especially pediatric cancer, which is in dire need of an infusion of research funding, both public and private.
But in the meantime, every day another 36 families will hear the words, "Your child has cancer."
- Missy Layfield