The answer Maddie Higgins gave when someone asked how long she intended to play in the front yard full of snow created for her in the middle of July wouldn’t have surprised anyone who knows a 6-year-old.
“Until it melts.”
In every way but one the Arlington girl is a typical kid.
But glioblastoma — a brain cancer that usually attacks adults — put her among the up to 20,000 Americans under age 18 who are diagnosed with cancer each year, said Dr. Jeff Murray, medical director of neuro-oncology for Cook Children’s Medical Center in Fort Worth. One of Maddie’s last wishes was fulfilled by the Haltom City-based charity Kinsley’s Kure when it brought snow to her home in July. Now, two months later, the surgeries and radiation treatments intended to stop the cancer have given way to morphine and home hospice care.
America devotes more than $5 billion annually to cancer research, but no more than 5 percent of it is dedicated to childhood cancer, Murray said. He and others involved with the disease want that to change. They want the funding to equal what’s devoted to breast cancer.
In 2012, the National Cancer Institute reported that almost $603 million was devoted to breast cancer research, while $208 million is dedicated to all childhood cancers.
Breast cancer is inexorably linked to the color pink, which will be everywhere next month. You’ll see football players wearing pink sweatbands and shoes, an occasional fire truck painted pink, pink-and-green camouflage shirts (deer season nears) and a zillion ribbons, bracelets and T-shirts.
And just last weekend at TCU, more than 2,500 pink-clad people showed up to shoot a video celebrating breast cancer survivors — in the middle of Childhood Cancer Awareness Month.
September is golden
Childhood cancer awareness advocates are pushing the color gold to represent their cause. Gold: the New Pink is a movement designed to raise the stature of childhood cancer to match breast cancer in the public’s mind.
A grassroots effort — A Day of Yellow and Gold to Fight Childhood Cancer — was started on Facebook by Tony Stoddard, whose 5-year-old son, Cole, died in January 2012 of neuorobalstoma.
He said he was left angry and frustrated as he watched the world turn a blind eye to the monster that is childhood cancer.
“Fighting for greater awareness in his memory has helped me channel that anger and focus it on helping make things better for all kids fighting cancer,” Stoddard said in an email from Sandown, N.H. “I was determined that we would never go through another September without the gold of childhood cancer awareness shining everywhere.”
So far, Stoddard said, buildings, landmarks and structures across the United States — including Niagara Falls, the battleship New Jersey and the Chesapeake Building in Fort Worth — have shined gold this month. And governors in 40 states — including Texas — have proclaimed September to be Childhood Cancer Awareness Month.
In his proclamation, Gov. Rick Perry said: “Whether you wear a gold ribbon that shows the world you care, raise money or make a donation that will go toward research for a cure, everyone is part of the solution to this disease that steals our little ones away too soon.”
Locally, Fort Worth Mayor Betsy Price and the city got on board with the campaign. On Tuesday, Tarrant County Judge Glen Whitley handed a copy of the county’s proclamation to Murray and proclaimed Sept. 17 Madison “Maddy” Martinez Day, honoring a 5-year-old girl’s courage during a year of treatments at Cook Children’s for neuroblastoma.
“ I crave to see as much gold in September as we see pink in October,” Stoddard said. “Our children need and deserve this.”
‘Try to make a difference’
While cancer remains the No. 1 cause of disease-related death for children, Murray said that about 80 percent of children who contract childhood cancer will survive.
But, he said, “if more research dollars were available for clinical trials and other research initiatives, more children would be cured of cancer, with better quality of life and contributing to our society as they grow up.”
Maddie’s mom, Melanie Higgins, said she doesn’t want to take attention away from others who are struggling with other forms of cancer, but she thinks attention should be spread more equally.
Melanie and Patrick Higgins have chronicled their daughter’s illness on the Fight for Maddie Facebook page.
They want people “to not turn away just because it’s sad, because it’s hard to look at these kids who have bald heads and blackened eyes,” Melanie Higgins said. “See them and try to make a difference.”