BARNEGAT – As bubbling five-year-old Charlotte Scalese prepared to head to day camp, she took a brief moment to discuss her upcoming trip to Disney.
“I’m going to see the castle,” Charlotte smiled brightly. “And all of the princesses, too.”
Charlotte named Elsa as her favorite princess, which somewhat puzzles her mom. Laura Scalese said that Charlotte’s never seen the movie “Frozen.” Perhaps it’s no coincidence that Charlotte feels a connection with a character whose theme song talks of not letting fear have control.
Her blonde hair neatly pulled back in a big bow, Charlotte’s outer appearance gives no hint there’s cause for concern. Even the hearing aids tucked behind both ears don’t seem all that unusual.
In reality, the hearing aids speak volumes of where the story begins. Charlotte received a diagnosis of a pediatric cancer called neuroblastoma at just two years old. Side effects from multiple rounds of chemotherapy caused Charlotte to suffer hearing loss.
Charlotte’s initial diagnosis came as a bit of a fluke when Laura decided to look into a rash she noticed in late March of 2019. Laura first visited an Urgent Care facility where the doctors suggested she get the rash checked at Jersey Shore Medical Center.
“The emergency room doctors said it was probably just a reaction to something and no big deal,” said Laura. “Something just didn’t sit well with me, and I decided to follow up with the pediatrician.”
When Laura spoke to the pediatrician, she mentioned that Charlotte also had a couple of bruises on her joints. It struck Laura as unusual since she didn’t remember her little girl falling at all.
The pediatrician seemed more concerned about the bruised joints than the rash and told Laura to bring Charlotte back to the emergency room.
“I told the pediatrician I was not going back to Jersey Shore,” Laura shared. “Instead, I went to Monmouth Medical Center, where I found the life-changing doctor for us.”
After a whirlwind of tests and scans, it appeared the rash was just something viral. However, the emergency room doctor said they’d discovered a mass by Charlotte’s bladder and arranged for a 4 a.m. transfer to Robert Wood Johnson Medical Center in New Brunswick.
Neither Laura nor her husband David has cancer in their medical histories. Laura had a perfect pregnancy, and Charlotte was born super healthy. Laura decided in the back of her head that her daughter just had a cyst and figured everything was fine.
When the doctors said they wanted to do a biopsy because they suspected Charlotte might have cancer, Laura said it didn’t register at first.
By that time, Laura had given birth to her second child and admitted she was quite postpartum.
“My son was only 12 or 13 weeks old, so dealing with this and a newborn was somewhat insurmountable,” Laura shared. “I felt like I couldn’t handle it all but had no choice.”
Doctors concluded that the biopsy revealed Charlotte had neuroblastoma, with a tumor by her bladder wedged between her heart and thoracic spine in an unusual area. At the same time, Charlotte developed RSV (Respiratory Syncytial Virus Infection) and was confined to intensive care.
“It was actually the RSV that landed Charlotte in the ICU,” shared Laura. “I had to remind people that it had nothing to do with the cancer.”
Ultimately, Laura and David went with a referral to Children’s Hospital in Philadelphia (CHOP) when they learned the renowned medical center was the number one facility for neuroblastoma patients.
Additional testing at CHOP determined that Charlotte’s neuroblastoma fit the high-risk category. Offered a choice of protocols, both parents decided to follow recommendations that started with five rounds of chemotherapy before the removal of the tumor. Next came two stem cell transplants and twelve rounds of radiation, followed by six rounds of immunotherapy.
“We probably had fifty plus emergency room visits to hospitals during her treatment,” Laura said. “In between her stays at CHOP, Charlotte’s platelets would drop to as low as zero.”
The good news was that the cancer stayed local, and the disease didn’t progress while Charlotte went through treatment. By July 2020, doctors said Charlotte showed no signs of cancer and was in remission. She just needed regular follow-up tests.
By that time, Make a Wish had already redone Charlotte’s room to make it extra special. Laura and David became involved with the Ashley Lauren Foundation, which provides hope and help for children with cancer in New Jersey.
Last summer, the Scalese family put together a lemonade stand to raise money for other children battling cancer. They were thrilled to take in $2,100 to give back to those in need.
Medical experts had suggested that passing the eighteen-month mark in remission meant they were headed in the right direction. The Scalese family’s lives seemed to return to normalcy as they neared Charlotte’s second anniversary free of cancer.
The earth-shattering news came at the end of this July. Although it appeared to be slow growing, a small tumor lit up the scan showing the cancer was back.
According to Laura, the doctors always used an analogy to describe Charlotte’s condition. They said she was the best player on the worst team and didn’t expect her to ever relapse.
“It just goes to show that you can’t put your faith and trust in doctors,” Laura said. “Even doctors will let you down.”
“There’s a reason why they say doctors practice medicine,” continued Laura. “The only one who doesn’t have to practice is the Lord. God is Charlotte’s ultimate physician.”
The most aggressive treatment option puts the odds of recovery this time around at just five percent. Both parents cringe at the thought of putting their child through the rigors of more brutal treatment. They’re not in a hurry to make such a drastic commitment.
“If we truly believe deep in our hearts that Jesus died on the cross, He already healed Charlotte 2000 years ago,” said Laura. “We’re going to live as though she’s healed until we get direction from the Lord to do something (more treatment).”
The decision boils down to what Laura sees as demonstrating obedience to the Lord rather than operating based on her own fear. No wonder Charlotte feels so drawn to Elsa as her favorite princess.
David said that from his perspective, doctors are highly educated people, but they are humans. He expressed his belief in miracles, bolstered by one the couple experienced firsthand.
Charlotte, who was conceived by in vitro fertilization (IVF), is the oldest of three children. She has two brothers, three-year-old Sebastian and ten-month-old Theo.
“The IVF doctor told Laura she’d never get pregnant naturally,” said David. “Never.”
David recalled when Laura called him from Home Depot to say she didn’t feel well. Laura felt the Holy Spirit led her to take a pregnancy test. Since Laura was sure she couldn’t get pregnant on her own, it didn’t make sense. It took fifteen positive pregnancy tests to convince Laura the couple was expecting their second child.
Sebastian seemingly proved that doctors and science can sometimes be wrong – and miracles happen. Baby Theo comes from the same set of embryos frozen that resulted in Charlotte’s birth.
Fast forward to today, and Charlotte and her family are back to lemonade stands. This time the fundraising efforts are for the Scalese family’s trip to Disney, where 23 family members will join them. The community, the Ashley Lauren Foundation, and David’s Dream & Believe Foundation have all joined in efforts to make every moment count for the Scalese family.
“I’ve seen parents who are so desperate to keep their kids alive that they will pull their heads through the mud to try to get them to survive,” Laura said. “I’ve seen kids relapse from neuroblastoma and watched those therapies.”
“Even with taking my faith out of it, I’d rather just have her enjoy life,” shared Laura. “I want Charlotte to have fun, live life as a wonderful family, and take away the memories.”
David added more regarding the couple’s decision to make every day count going forward.
“God gave us 24 hours,” shared David. “Live in the day; live in the moment. Don’t worry about what tomorrow brings.”
Charlotte’s picture from two years ago appears on a billboard in Manasquan highlighting The Ashley Lauren Foundation. The Scalese family plans to set up more memorable family trips and gratefully appreciates any monetary donations made in Charlotte’s name through the Foundation’s secure website found at ashleylaurenfoundation.org.