For the past month, I’ve been trying to do my part to raise awareness of childhood cancers. I’ve blogged about it. Facebooked about it. Tweeted about it. I’ve worn my gold ribbon lapel and answered many questions about it. I’ve worn a bright-yellow Alex’s Lemonade Stand Foundation t-shirt and answered questions about what they do. I’ve worn my Team Lane t-shirt that boldly says, “Cancer Bites.” My Truth 365 t-shirt. My St. Baldrick’s t-shirt. I’m sponsoring an Alex’s Lemonade Stand “Change for Childhood Cancer” at my daughters’ school. I’ve repeatedly worn and said anything that brings awareness to childhood cancer. All in the hopes of doing my part to raise awareness and funds for cures.
And today, for the first time, I saw something that made me believe that finally, people were paying attention to the problem.
I was reading today’s Miami Herald and on the front page of the Tropical Life section (which is dedicated to health-related issues on Tuesdays) was a story of a beautiful seven-year-old boy named Sal Vanni, who died of stage IV neuroblastoma. The same bastard cancer that killed Isabella Santos and Ronan Thompson and Alexandra Scott and thousands of other beautiful children.
I’ve read so many of the stories. Leg or belly pain. Treated as a virus. Pain gets worse. Misdiagnosis follows misdiagnosis until finally, the parents hear the four worst words in the English Language: “Your child has cancer.”
And when the diagnosis is stage IV neuroblastoma, too many of these parents learn pretty quickly that the prognosis is grim. Because after suffering the effects of chemotherapy treatments formulated for adults (because the drugs for children don’t exist), far too many of these parents hear the next four worst words in the English language: “The cancer is back.”
And once that happens, the chance of long-term survival is almost gone. Relapsed neuroblastoma has no cure. It’s aggressive and it’s ruthless. So without money to fund research into finding a cure, these children die, not peacefully, but painfully, with broken, emaciated bodies. Their parents have to watch helplessly as cancer eats their child alive, as they frantically search for some kind treatment, ANY kind treatment ANYWHERE to save their child’s life. But sadly, these treatments simply do not exist.
In the Herald article, Sal’s parents describe that agony in detail, so for Miami Herald readers, it’s now hitting very close to home. Miami also is the home of Bella Rodriguez-Torres (“Pray for Bella” on Facebook), who is undergoing chemotherapy for relapsed AT/RT, another deadly childhood cancer. So for those of us who follow these stories–and even for those who, until today, knew nothing of them–we feel like we “know” these kids. I pray for Bella every day and night. In fact, I have a list that grows every day. Each time I learn of another child suffering from childhood cancer and read his or her story, that child sears my heart and gets added to my prayer list. Sadly, the just keeps getting longer and longer.
But hopefully, with stories like the one The Miami Herald ran today, awareness will grow, people will start to get angry about these kids who are sick and dying, and maybe, just maybe, those people will start donating to foundations like the Mystic Force Foundation (www.mysticforce.com), The Isabella Santos Foundation, The Ronan Thompson Foundation, or Alex’s Lemonade Stand Foundation. Foundations named, respectively, for Sal Vanni (7), Isabella Santos (7), Ronan Thompson (3), and Alexandra Scott (8), who all died of stage IV neuroblastoma. And there are hundreds of other worthwhile foundations just like them, named for children who are fighting or have died fighting this horrible beast that is cancer.
If reading about these kids hasn’t touched you yet, let me leave you with seven-year-old Sal Vanni’s last words, as reported in the Herald by his mother, Silvia. The last thing Sylvia heard her son say before he died:
“I’m in so much pain, I need a new body.”
Words no child should ever, ever have to utter. And an agony no parent should ever have to bear.