As a writer, sometimes things come at you. You don’t know why, but they do. Sometimes you get the assignment to write something, write a story, and sometimes a story finds you.
baskets. We received a message about an ad on Facebook Marketplace for baskets we had for sale. The person wanted to buy them and said they needed them for a tricky tray. There was some back and forth about the exchange and the woman said the baskets were being used for a charity for a child with cancer, for an event in Edison.
Immediately our thoughts went in a completely different direction: a child with cancer. You know what, we don’t need the money, we donate it. We took the baskets to Clark, where the woman worked. Noreen Croteau was grateful and emotional when we delivered the baskets. And then she told us all about a golf event and dinner, all for a close friend’s granddaughter.
We were so touched by what we were told, and I needed to know more right away. I was able to reach the child’s grandmother, Lucille Capone, a resident of Roselle Park, and she shared the story of her granddaughter with me.
Charlotte “Charley” DeMaio was born on April 13, 2018 to Nicole and Steven DeMaio of Manalapan. Charley started feeling sick in November 2020. Symptoms ranged from fever, stomach pain, headache, vomiting, constipation and then diarrhea and lethargy.
Three trips to the emergency room over the next five weeks proved fruitless. The attending physicians diagnosed numerous things – a virus, an infection, gastrointestinal blockage, etc., always assuming the problem was gastrointestinal. Several X-rays and MRIs were taken and two courses of antibiotics were prescribed.
Nothing seemed to help.
And still no answers.
In the meantime, Charley got sicker – not eating, unsteady on her legs, and worsening headaches.
Given the COVID-19 situation at the time, there were no in-person doctor visits, which made the situation even more frustrating for the family as they were only looking for answers and help for Charley.
Their search led them to a pediatric gastroenterologist who conducted a virtual exam with Charley and her mother on Jan. 20, three months after symptoms began. The doctor had scheduled a personal appointment for a date in February.
The next morning, however, Nicole got a call from the doctor. The doctor told Nicole that she had been thinking about Charley all night. She asked Nicole to take Charley to the emergency room at Hackensack Meridian Jersey Shore University Medical Center in Neptune City for a CAT scan of her chest, neck, and head, and that she would sort it all out for her.
Nicole arrived at the ED around 8pm that same night and a CAT scan was done. A mass was found at the base of her brain, near the spinal cord, about the size of a strawberry. Within hours, Charley was flown to CHOP (Children’s Hospital of Philadelphia). Mother Nicole accompanied terrified Charley on the bumpy helicopter ride to Philadelphia, while Father Steven hurried by car to meet them, as no one could have expected this turn of events. It was only intended as a quick scan and suddenly the family is taken away.
Emergency surgery was performed within hours to remove the mass.
Why was there no answer after so many investigations and consultations? Why did this one doctor suddenly think of that, who seems to be outside the realm of their concentration and expertise? Who was this doctor? I asked Grandmother Lucille to give the doctor’s name, because I wanted to ask that question, knowing they probably wouldn’t talk to me.
The doctor? Brittany Parlow, a pediatric gastroenterologist in Neptune City. Why did that name sound familiar? I googled the name and found an old Facebook post welcoming Dr. Parlow to the practice. Look, I see a very familiar name who “likes” the post. And so I sent the person, a close friend and classmate from high school, a private message.
“Hey Jerry! Quick question…do you know a Dr. Brittany Parlow? She is a pediatric gastroenterologist.”
“I do! She’s my daughter.”
So then it all made sense to me…why I had to write this.
dr. Parlow was able to find what no one else seemed to consider.
But Charley’s nightmare had only just begun.
The tumor revealed that Charley had a rare and aggressive cancer called anaplastic ependymoma. Anaplastic ependymoma is a type of ependymoma, a tumor that forms when cells in the central nervous system (including the brain and spinal cord) begin to multiply rapidly. An ependymoma is anaplastic if the cells grow very quickly and are significantly unusual in shape.
Charley did well to get through the surgery and was sent home after a 10-day stay. But then came 33 rounds of radiation. 33. For six weeks, the family made the daily journey from their home in Manalapan to CHOP in Philly. And because Charley is so young, she had to be put under anesthesia to receive the treatments, which involved placing a port in her chest so she could get the anesthesia and medication with the least amount of trauma.
But there was more. Four rounds of chemotherapy, each round lasts a month, including a week patient, go home, come back for a few days, go home, come back, and so on.
And there are so many difficulties that come with it. During the first month of treatment, Charley developed sepsis – a serious condition resulting from the presence of harmful microorganisms in the blood or other tissues and the body’s response to their presence, potentially leading to malfunction of various organs, shock and death. As a result, she spent two weeks in the hospital.
In the second round, she got another infection, which resulted in an extension of her planned week-long stay by 10 days.
Charley was going through a lot and, as you might expect, “I miss my hair.”
At that point, a feeding tube was inserted so she could get the nutrition and medication she needed, which she couldn’t consume orally.
One of the drugs irritated the gastric mucosa and during the third round of treatment she had ulcers that caused so much pain that round 4 was delayed. Her treatment team decided that for her the harm outweighed the benefit and so round 4 was never given.
Lucille said Charley is now home, the port in her chest has been removed, but the feeding tube remains. She will need physical therapy for walking and other after-effects of the treatments.
She said Charley is making progress, gaining weight, her hair started to grow back, and she even went to kindergarten.
And now it’s a waiting game. Charley will need to be scanned for signs of cancer every three months for the next two years, then every six months for the next three years, and every year after that.
“However, you can only imagine what her family is going to do. You hold your breath with every scan, basically every day,” Lucille said. “Every time she coughs, sneezes, or has a headache, you think the worst.”
The medical bills aren’t even all in yet, but the bill for the 33 rounds of radiation alone was $700,000. The family has health insurance, but even then the bills are overwhelming.
“I started ‘Staying Strong for Charley,’ a nonprofit to raise money for these accounts and everything they need,” Lucille said. “We decided a few months ago to hold a fundraising golf tournament at the Metuchen Golf and Country Club on October 19th. The help of friends, family (like Noreen) has been invaluable. I’ve had strangers send letters and checks to help. It’s been great.”
The golf event still has openings for sponsorship and tickets are available for dinner.
The website is www.stayingstrongforcharley.com. The organization will continue to raise funds to help other families in need and support the fight for healing.
“We are grateful for the incredible support from friends and family and everyone who has contacted us,” said Nicole and Steven. “Charley is the most courageous girl we know and it amazes and empowers us to see how she handles all of this with so much positivity. We are so thankful for everyone’s wishes and prayers. God bless you all.”
It was difficult to write this, for many reasons. As a parent, I cannot comprehend what Charley’s parents must be going through. I’ve never been able to understand what her siblings – six-year-old brother Frankie and five-year-old sister Emma – must be thinking at this point in their lives. I can’t imagine what goes through a child’s mind with all she’s been through.
But sometimes you just have to stay strong. This time it was for Charley.
Alan Karmin is a correspondent for the Media Group newspaper.