Sept Day 18: Isabella's Impact.
There's a lot that could be said about Isabella Santos. Every time I see this picture though, all I can think of Isabella's mom. Imagine for a minute you're her and this is what you've learned to say about your oldest daughter:
- "She had an orphan cancer with 40 percent chance of survival."
- "She relapsed five times in five years."
- "She didn't make it. She died at the age of 7."
When out in public, Erin Santos says those things calmly. Almost unemotionally. They're facts. Privately, she lets those words feel a little more.
Isabella Santos was diagnosed with neuroblastoma at 2-years-old. It started with back pain. Doctors finally found a Stage IV tumor in her abdomen. She went through treatments and hit remission.
Months later this vibrant sparkplug of a princess toddler relapsed. She battled back, then relapsed again. This happened multiple times. Erin says she was considered a miracle just for going into remission. If you relapse with neuroblastoma, there's only a 5 percent survival rate.
Isabella fought -- her entire family fought -- until 2012. She died soon after meeting actual princesses at Walt Disney World. I'll never forget her dad Stuart calling hours after she passed. So many people loved Isabella, he said. He knew everyone would want to know. To this day, Erin recalls those moments with descriptive, hard truth.
"The last couple hours she was alive, I just held her hand and rubbed it," she says bluntly, through tears. "Even though she had started to turn gray, I never looked away from her. I watched her the whole time she died. I owed that to her."
Erin is not one to mince words.
"I just think if anyone had to watch what we watched there would be a cure tomorrow," she said. "To watch your child's skin slowly not be pink anymore… it's your worst nightmare. We felt like we owed it to her to be there the whole time. And we were."
You guys should hear Erin say it herself. You can watch the video here. On that website you'll see lots of information about The Isabella Santos Foundation. The foundation has donated well over a million dollars to neuroblastoma research and other related causes.
I don't know what Erin and her team will dream of next, but I'm going to follow as they lead.
PPS: In case you missed them: