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Faces of Neuroblastoma Ava Crowley

Meet Ava Crowley

Ava Crowley was just 2 years old when she was diagnosed with neuroblastoma. Her first symptoms were an intermittent but persistent stomachache. The pain lasted for just an hour the first night she reported it to her parents, Nickelle and Spencer Crowley of Miami, Fla. Out of caution, they consulted with their pediatrician that evening about the possibility of appendicitis. He suggested ibuprofen and a trip to the ER if the pain persisted. Ava took her medicine and 20 minutes later fell asleep for the night.
Unfortunately, the nightmare of Ava's health woes was about to unwind. Over the next few weeks, the belly aches persisted. Her mom tried adjusting Ava's diet to see if she was experiencing gluten or lactose intolerance, but the pain kept coming back.
Coincidentally, Ava's older brother was in school with a girl who had liver cancer. At a party, Ava's mom asked a family friend of the girl how theyknew she had cancer. The answer was a gut-wrench for a mother's intuition: she complained of pain in her abdomen when she laid down at night.

That weekend, Ava complained of more pain. "Mommy, it really hurts when I go pee pee," Ava told Nickelle. So, Nickelle packed up Ava's brothers and sister (kindergartener Thomas, then 6 years old, and twins Ella and Jackson, who were 4) and off they went to the pediatrician's office to test Ava for a urinary tract infection. Though a UTI was a rare occurrence in a 2-year-old, it was a far gentler idea than the terrifying one that had been gnawing at Nickelle. After the tests came back clear the pediatrician asked Nickelle what she thought it might be, and she told him about the little girl with liver cancer. She told the doctor that she thought Ava had a tumor.

A referral to a gastroenterologist followed. He ordered stool, urine and blood tests, following them up with an ultrasound. While the tests came back normal, the ultrasound found a "pseudo tumor."

The next day, Ava and her parents were sitting in an oncologist's office at Nicklaus Children's Hospital in Miami (formerly Miami Children's Hospital). A PET scan was ordered and on Tuesday, May 1, 2012, Ava was diagnosed with cancer. By that Friday, a urine test confirmed their worst fears come true: Ava had Stage 4 neuroblastoma, a solid tumor cancer that arises in immature nerve cells and strikes primarily infants and children. The grapefruit sized tumor in Ava's body had taken over her left adrenal gland and had spread to her chest.

"After she was confirmed with neuroblastoma, we went to CNCF's (Children's Neuroblastoma Cancer Foundation's) website and downloaded the Parent Handbook," said Spencer. "That was our baseline for understanding what we were getting into. It was the only resource we had."

The family used the handbook to locate neuroblastoma experts at The Children's Hospital of Philadelphia and Memorial Sloan Kettering Cancer Center in New York City.

"That handbook was our saving grace," said Nickelle. "We were learning new language, medical terminology. It definitely was an incredible resource."

Ava, who was barely a toddler, went on to endure six rounds of chemotherapy, a 4 1/2-hour surgery to remove the tumor, a stem cell transplant, 12 rounds of radiation, and immunotherapy. Even though Ava was declared NED (No Evidence of Disease) after chemotherapy and surgery, in September 2012, the doctors confirmed the best chance Ava had to beat this disease was to continue with the stem cell transplant, radiation and immunotherapy. Ava completed the 13-month treatment in June 2013.

Ava Crowley's parents and siblings breathed a huge yet cautious sigh of relief as thoughts of relapse loomed in the back of their minds. The statistics were there to back up their fears: Nearly 70 percent of children diagnosed with neuroblastoma have advanced-stage disease. Studies show, approximately 60 percent of children who complete treatment, with immunotherapy, don't relapse for up to five years and for children who do not endure immunotherapy as part of their treatment, 40 percent of them don't relapse.

Indeed, Ava's cancer journey was not over. In October 2014, a routine follow-up scan revealed a very small spot on her chest. The doctors, unconvinced that it was a relapse, decided to watch it closely. In December, the spot was still there so Ava underwent exploratory surgery with the surgeons finding no sign of disease. But the spot persisted and on April 3, 2015, Ava underwent another surgery. Doctors discovered a pinky-size tumor behind her aorta. Surgeons were able to remove all but 10 percent of it, which had grown into the arteries connecting her spine and aorta. Ava once again began chemotherapy. She endured two high dose rounds of chemotherapy and two low dose rounds of chemotherapy with proton radiation.

On July 29, 2015, a scan showed the spot was gone and, once again, Ava was declared NED. Follow-up scans remain clear and Ava is looking forward to celebrating her 7th birthday with family and friends on May 18.