September is National Pediatric Cancer Awareness Month

Personally, I'm not much of a blogger. However, since we are now into September and September IS National Pediatric Cancer Awareness Month, I felt the need to share (with her permission) the blog of a friend I've recently made, Sandy Smith. I hope people across the country will join me in supporting Sandy and other parents in not only fighting for a cure, but in praying for strength during their journeys. To learn more about Sandy and her family's journey, please visit www.caringbridge.org/visit/aws. Take a moment to sign their guestbook. Tell them Bonnie and Kim sent you.

At one time I lived what many would consider a fairly normal life. I was consumed with my family, my home, with my children’s spiritual, academic and musical development. My oldest son Stephen began to read long before he reached kindergarten. My daughter Charis picked up the violin and began to play at the age of two. We were consistently involved in the services and activities of our church. By the time Andrew was born, our routines were established; he fit nicely into the fourth bedroom and into our lives.

I worked to keep the house spotless, to cook meals my husband would enjoy, and to educate my children at home. I enjoyed teaching the teen girls’ Sunday School class and spending time with the ladies of the church. I arranged our schedule so that my children regularly practiced piano along with violin, viola or cello, and I made it possible for Stephen and Charis to participate in an award-winning children’s choir. We enjoyed playing games and sharing meals with friends, and I walked daily in an effort to take care of myself. I shopped at the local grocery store, frequented the town library with all three children, scheduled regular doctors’ appointments, and dreamed of the future...until one fall afternoon when everything changed.

I will always look back at October 25, 2007 as the day our lives were turned upside down. For over a month 6-year-old Andrew had been struggling with symptoms we thought were related to a virus. We ended up in the local hospital Emergency Department that afternoon, and by early evening we were advised of CT scan results. “There is a large area of swelling in the brainstem.” After a pause the physician’s assistant continued, “We suspect a mass.” The next morning we met the pediatric oncologist and learned that Andrew has a diffuse intrinsic pontine glioma, a rare and deadly inoperable brainstem cancer. We walked into the hospital an average family; within 24 hours we were thrust into the world of pediatric cancer.

September is Childhood Cancer Awareness Month, a good time to reflect upon the past two years of our lives. I am grateful that we are still a family of five. Most children with Andrew’s particular cancer are dead within a year of diagnosis. I have friends who have buried their children. I know a little girl who leaves messages on the white board in the garage for her sister in Heaven, a little boy who rides his bike to the cemetery to visit his brother’s grave, and a young couple who eagerly look for notes left for them by their daughter before she died. When I think of Andrew’s first grade year, I think of radiation treatments, steroids, and the 24 hours he spent on life support. I feel at home among bald heads, puffy cheeks, and little children attached to I.V. poles. I read medical abstracts on brainstem glioma research, have assisted several families with tumor tissue donation after the death of a child, and am working with some state officials on the wording of a childhood cancer awareness resolution.

Just as most do not know that the gold ribbon has been the symbol of childhood cancer since 1970, people would not guess by looking at me that my youngest child is among the one in 330 who will develop cancer by the age of twenty. I blend into the crowd in a restaurant, but our living room resembles a pediatric intensive care unit, and we check into the local hospital for chemotherapy every three weeks. I look like the average shopper in a grocery store, but my son is one of over 12,500 children diagnosed with cancer every year. My husband preaches on Sunday mornings, studies during the week, and gets up in the middle of the night every night to attend to the needs of an 8-year-old who has lost the use of the left side of his body. My ten-year-old daughter will enter fifth grade this month; she has befriended three little girls who are battling cancer, and her heroes are the nurses who dedicate their lives to caring for children like her brother. My thirteen-year-old son enjoys reading and lives with the knowledge that we don’t know how long his brother will continue to beat the odds.

Diffuse intrinsic pontine glioma (DIPG) is one of the most deadly forms of pediatric cancer. It is shocking to note that treatment for this particular brain cancer has not changed in more than 30 years. A conservative estimate is that between 15 and 20 children die of DIPG each month, yet very little research is being done to try to combat this horrific killer of our children. Visit www.justonemoreday.org to learn more, including how you can help.

SEPTEMBER IS NATIONAL PEDIATRIC CANCER AWARENESS MONTH.
FIND A CAUSE BEFORE A CAUSE FINDS YOU!
Visit www.JustOneMoreDay.org
to find out how you can help the cause.