NJ girl met the Pope, and now her cancer's gone

Grace "Cookie" West doesn't like to use the word "miracle" lightly.

"I feel like I have this privilege," the 12-year-old said, sitting in the New Jersey 101.5 studio last week following a visit with morning host Bill Spadea.

It's been six months since Grace and her family learned her stage IV, high-risk neuroblastoma — a pediatric cancer that affects nerve cells — had disappeared. In stage IV, the cancer has spread throughout the body, and less than half of children with the diagnosis live another five years.

And it's been a year and a half since the moment Grace and her family say turned around an impossibly difficult struggle — when the Make a Wish Foundation flew her to Rome to meet Pope Francis.

The pre-teen speaks with a certain calmness about her ordeal. Back at school on a normal schedule, back on her swim team, back leading the life a parent wants for a 12-year-old, she's thankful for good news she never expected.

"It's good to be sick, like any other kid," she said. "Like not, sick-sick. You just have a cold."

Grace's visit with Bill Spadea

A 'pulled muscle'

Grace's family first became aware of her cancer when she was 10 years old. She'd had a fever, and severe back and hip pain for a week. Her first doctor thought what many might — that she'd suffered a pulled muscle, and there was probably nothing to worry about.

But the doctor told her family to come back if the problems persisted. They did. And in a hospital visit a week later, Grace's doctors delivered an answer to a question her family had never asked — they told the West family Grace's bloodwork didn't show signs of leukemia.

"From a pulled muscle to leukemia doesn't really add up in our minds," Grace said.

The diagnosis after an MRI scan was just as troubling as the suggestion of leukemia has been. In a stage 4 neuroblastoma, tumor cells have metastasized — requiring advanced, intense and harrowing treatment.

"I had no idea what it meant," Grace said. "It took me so long to learn how to say that."

What it meant most immediately: Chemotherapy. Radiation. Surgery.

"I've gotten my heart stopped and I never thought that would ever come into play, ever in my life," she said.

Seeking a miracle

Grace's mother, Sharon West, said over time, the family tried to make the best of any good news — or even the absence of bad news. After several months of treatment, Grace's scans stabilized. She wasn't getting better, and she wasn't getting worse.

Grace's doctors turned to maintenance chemo, meant to keep the cancer at bay, but not knock it out.

"I don't want to be on chemo for the rest of my life," Grace said. "I hate chemo. Chemo is horrible."

That's when the West family turned to the Make-a-Wish Foundation — and with its help, arranged a trip to meet Pope Francis.

Grace lights up when she discusses the Dec. 17, 2014 trip. She couldn't speak to the pope in English — but said she immediately picked up on a sense of peace about him.

"You could tell by his expressions he was genuinely happy for me," she said.

"He hugged me, and then he looked in my eyes and kissed my forehead," Grace said. "It was this moment in time where everything stopped, and I was like, 'I'm living this moment. Like this second. Like right now.' It was crazy."

Grace returned home and continued her treatment — a new regimen Sharon West said doctors hoped would remove just a small bit of her cancer at a time, and make more progress than the chemotherapy had to that point. She was put on a new antibody drug that had shown encouraging results among patients.

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Panic and joy

On Dec. 11, 2015, Grace's doctors performed an MRI scan — as they had countless times before.

And then, Sharon West said, they performed another.

"I was panicked. I knew we had been through enough scans, and I knew they didn't run the scans twice," Sharon West said.

She continued: "And they said we just really have not seen this before. ... When those scans came back clear, I don't think anyone was anticipating that."

Dr. Shakeel Modak, a pediatric oncologist at Sloan Kettering, told the Asbury Park Press last year it was "very unusual" for someone Grace's age to respond so well to treatment. He described her as a "unique kid, very composed, poised, confident, (with) a can-do attitude."

Grace doesn't attribute her miracle to meeting Pope Francis alone — though she says it's an important part of the mix. A young girl of faith, she credits the loved ones who prayed for her, the community members who came to her family's aid and the doctors who worked continuously to beat her cancer together for her recovery.

"These doctors that work tirelessly with this every day, and the nurses," Sharon West said. "I don't know how they do that. That in and of itself is a miracle."

And whatever lead to Grace's recovery, she's taken it upon herself to bring a miracle to others. Through the Cookie's Crumblers Foundation, she's raising money to help fund research on childhood cancer. The foundation held its first "Gala of Gratitude" June 4 and accepts donations online.

Grace's fight against her cancer, though in remission, isn't quite over. She still needs to continue vaccine treatments for several more months, and routine monitoring to make sure the cancer doesn't return.

And she said that in the back of her mind, she can't forget life doesn't always turn out "like a book," with a neat, happy ending.