CHARLOTTE, NC (WBTV) - Today little Willow-Grace Hinson starts chemo.
This joyful baby (is this not the cutest picture?) was born happy and healthy in Lancaster, South Carolina. Her mom, Nicole Summitt, said she noticed a knot on little Willow-Grace's side. The pediatrician said it was normal.
But Nicole says when her daughter turned 6 months old, the knot was really hard and protruding on certain days. At 7 months old they went on family vacation and the knot seemed to hurt when Nicole pressed on it.
In their 9-month check-up – just last month – Nicole says the doctor still didn't seem phased but said she'd schedule an ultrasound "just to ease minds."
The week continued and Nicole said doctors never called about setting up an ultrasound. She turned to Google. Everything she read made her more concerned.
"We were out for dinner and I finally talked Willow-Grace's dad into just 'stopping by' the ER on the way home to get an ultrasound," Nicole said. "I knew if we went we'd have results the same night."
Scans showed little Willow-Graces's liver was large and course instead of smooth. She was immediately transferred to Levine Children's Hospital.
"We went home and packed an overnight bag," Nicole says. "We let our dog out. We thought it might be awhile, but had no idea what we were about to face."
They were met by three pediatricians. Questions. Questions. Paperwork. Questions. Then a CT scan with results.
Their baby girl had liver cancer. Hepatoblastoma. Very rare. Affects young children. Doctors told them they only treat 1-2 cases at Levine's a year. Willow-Grace's tumor was huge.
"They told us cancer was throughout her liver," Nicole said. "We stared at our happy child playing her heart out in a hospital crib while our hearts ripped to shreds."
On August 17, Willow-Grace had ¾ of her liver removed. The tumor was the size of a softball and three times the size of her entire liver.
She only weighed 15 lbs, so a tumor this large was taking all the nutrients she needed to grow.
Today – as in right now as I post this Thursday morning – Willow-Grace is being readmitted to Levine's to begin chemo. Turns out doctors said she'd need it anyway.
"No child should experience this journey," Nicole said. "We went from eating at an Outback Steakhouse on a Friday night to discovering our daughter had cancer by Saturday morning," Nicole continued.
"All these kids are special heroes," Nicole said. "And if I can offer any advice…. Please hear me… Please… do not ignore your parental instincts. If you know something isn't right, keep fighting it. Don't let things go unnoticed."
Nicole says they're nervous about starting treatments today, but will try to stay strong.
"We already know Willow-Grace will end up with hearing loss because of this chemo," Nicole said. "It's frustrating that the medicines she has to help her will also hurt her. That's because chemotherapy plans are decades old and there's a lack of research. Our hope is CureSearch for Children's Cancer Children's Oncology Group – the group that comes up with chemo plans across the U.S. – starts getting more attention.
They need help getting together more current-day plans. What these kids face right now is unacceptable."
Look at this sweet baby's face and imagine a tumor sucking up her nutrients, trying to kill her liver.
Spread the word, my friends. These kids need our help. Babies like Willow-Grace can try to fight, but we have to be the ones to speak for them.
**Editor's note: This is a about a member of #MollysKids, one of the kids WBTV Anchor Molly Grantham follows closely on her Facebook page. This article was first published there – maybe you'll be able to tell that in the personal way it's written. For years Molly has followed the stories of dozens of kids with uphill medical battles. Find this story and updates on all of #MollysKids here.**