For several months, I’ve been following the Facebook posts of the mom of a nine-year-old girl named Bella who, at age 4, was diagnosed with alveolar rhabdomyosarcoma. She’s been fighting ever since. I also just found out about a 13-year-old boy named Lane Goodwin, who also is fighting the same disease. On Lane’s Facebook page, it states that alveolar rhabdomyosarcoma, “is a rare & aggressive childhood cancer that is only diagnoised in 1 per million kids.”
One per million. And yet, here are two children I “know” who have it. Both were stage IV when they were diagnosed. Not surprising. Like neuroblastoma, this cancer is typically quite advanced when it’s diagnosed. And like neuroblastoma, because it’s so “rare” a cancer, research for a cure is as rare as the cancer itself.
The families of both Lane and Bella have used Facebook and other social media to raise awareness about childhood cancer. It’s working. After all, that’s how I found out about both of them. Right now, Bella is undergoing another round of chemotherapy to fight another relapse of her disease. Lane, on the other hand, is now in the awful stage of his fight in which there is nothing more the doctors can do. The cancer has invaded his brain and he’s in hospice care, where his mother simply prays either for a miracle cure or for him to finally be free of his suffering.
He’s a 13-year-old boy. Yet to look at the heartbreaking photos of him, he easily looks 80. This is what cancer does to children. Want to see for yourself what cancer does to a child and his family? Check out his page on Facebook: Prayers for Lane Goodwin.
Want to join the growing number of people praying for 9-year-old Bella Rodriguez-Torres, who bravely fights every day? Check out the “Pray for Bella” page on Facebook.
Talk to others about these beautiful children. Share their Facebook pages. Look at these kids’ faces and ask yourself whether this “rare” cancer is too rare to push for a cure. Every time the National Cancer Institute fails to allocate enough money to childhood cancer–a mere 3% of their total funding goes to ALL childhood cancers combined–that’s the message they’re sending.
And it’s simply unacceptable.