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Funding needed for our littlest cancer patients

By Betsy Flagler
John Rosemond
Betsy Flagler, who lives in Davidson, writes the nationally syndicated Parent to Parent column.

Pink was prolific in October. Even NFL players donned pink to raise awareness in the fight against breast cancer. But there’s another color, another cancer, that doesn’t get as much attention or funding: gold to recognize childhood cancer.

Pediatric cancer, the leading cause of death by disease among U.S. children ages 1-14, did hit the media spotlight recently, for a terrible reason: The National Institutes of Health turned away sick children from treatment in clinical trials because of the government furloughs.

Because children are not little adults and don’t always respond to adult medications, the best way to improve cancer treatments for children is through research designed specifically for them, according to the NIH. Any interruption of that research can be devastating.

The impact of the government shutdown was no surprise to Gretchen Holt-Witt, founder of the nonprofit organization Cookies for Kids’ Cancer. Her son, whom she calls Prince Liam the Brave, died of cancer in January 2011 at age 6. Liam inspired his mom’s idea of raising money for research and awareness through bake sales. In the past five years, supporters of Cookies for Kids’ Cancer from 50 states and more than 4,500 cities worldwide have raised millions to fund more than three dozen research projects.

But for little Liam, funding to bring research to clinical trial came too late. Holt-Witt wrote recently on her blog at cookiesforkidscancer.org:

“… in August 2011, we learned that the same promising research in need of funding that (had) sprung us to action was being moved into clinical trial.” The funding helped speed up the process, she writes, “but the taste of success was bittersweet, as it came just seven months after we lost our precious Liam to this cruel, relentless disease.”

The organization strives to save other families from feeling that “endless sense of loss combined with the aching knowledge of what might have been,” she wrote. As part of the group’s fundraising efforts, Holt-Witt has written two cookbooks published by Houghton Mifflin Harcourt: this year’s “Cookies for Kids’ Cancer: All the Good Cookies,” and 2011’s “Cookies for Kids’ Cancer: Best Bake Sale Cookbook.”

Among the supporters of the cookie campaign is Amy Christenbury of Charlotte, one of the first moms to hold a Cookies for Kids’ Cancer bake sale in 2008. She’s part of the “mommy momentum” pushing for awareness of and funding for pediatric cancer, all while caring for her son Grier. He was diagnosed in 2007, at age 2, with stage 4 neuroblastoma. As Grier continues treatments and attends some half-days at school, his mom is planning her sixth year of fundraising through bake sales. The family’s website, www.gogriergo.com, keeps friends and family posted on his progress.

Social media is both kind and cruel to parents who share stories of their children’s battles with cancer. A mother who calls herself Mary Tyler Mom, writing for the site Chicago Now, says some longtime readers don’t understand why she “still writes about Donna” four years after her little girl died of a brain tumor at age 4. She has even been told to “get a new angle,” as Donna’s story is “wearing thin.”

Her touching “Donna’s Cancer Story” first appeared in a series in September 2011 to recognize Childhood Cancer Awareness Month. Each post covered one month of Donna’s 31 months of cancer treatment.

This mom continues to find solace in writing about her daughter, but she also has a new story of hope to tell: Her second child is a healthy, happy 4-year-old, and she and her husband recently adopted a baby boy.

Email Betsy Flagler at p2ptips@attn.net.

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