CHARLOTTE, NC (WBTV) - Imagine for a minute you're a mother and this is what you've learned to say about your oldest daughter:
"She had an orphan cancer with a 40% 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 spark plug 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% 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. Go HERE to watch an amazing video: https://www.isabellasantosfoundation.org/about/
(I find that video particularly powerful on a Sunday morning when many of us take a moment to breathe deeply and count blessings.)
In six short years, The Isabella Santos Foundation has donated a million dollars to neuroblastoma research and other related causes. It was recently voted Charlotte's best charity. Right now its focus is to fund clinical trials to help kids who relapse.
If you're looking to take ACTION this month for Pediatric Cancer (a concept originally from Erin that I have openly stolen), sign up for The ISF annual 5k. It's in Ballantyne on September 24.
REGISTER HERE: www.isabellasantosfoundation.org
At the 5k there's a HUGE kids area, silent auction and...
...THERE WILL BE A #MollysKids TENT!!
YES! I'm really excited.
Erin dreamed up having a place where we – every age – can write get-well cards for #MollysKids you've read about this month.
I love it, love it, love it. ACTION, ACTION, ACTION.
And, I love you, Erin. Keep kicking butt. You know she's proud of all you do in the spirit of her.
P.S. - An Isabella Santos Foundation-slash-#MollysKids Tent!
**Editor's note: This is about one of #MollysKids in the month of September, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there – which is why it's written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. During Pediatric Cancer Awareness Month, she features one a day. Thirty total. Find this story (and updates on all #MollysKids) here.