Childhood Cancer
- Five-year-old Arianna is currently battling stage four, high-risk neuroblastoma. But her diagnosis came after experience back pain that was repeatedly misdiagnosed. Thanks to her persistent mother, Arianna eventually received the correct diagnosis.
- Arianna likes to wear her Wonder Woman costume to the hospital because it makes her feel stronger. And even as she undergoes a brutally long regimen of treatments, she’s managing to keep a smile on her face as much as possible.
- Being a parent and a cancer caregiver at the same time is a huge responsibility. It's important to take care of yourself and find the time to celebrate life's happy moments along the way.
“Arianna is so strong and she continues to laugh and smile, taking everything in her stride,” her parents said via the fundraising page for their eldest daughter’s treatments. “Her love of superhero costumes especially her Wonder Woman outfit has given her the strength and confidence on the days when this has been incredibly scary. She has been nicknamed the real life Wonder Woman by her supporters.”
Read MoreEven when Arianna’s parents first sought out medical expertise, their suspicions were supported by the doctor who also suspected her new bed was to blame. Then, her pain disappeared for a short time before returning and moving to her lower back in mid-November.
The day after Arianna complained about her lower back really hurting, she had a cousin’s birthday party to go to. That morning, Solieri said Arianna “seemed a little bit off but not so much that [she] would be overly concerned,” so they went to the party to she how she would feel. But Solieri knew something was off when she didn’t join in on the bouncy castle, and her concern only grew when her daughter started to limp.
They left the party and immediately went to urgent care. Her temperature was slightly raised and her pain “very, very quickly” got a whole lot worse, so Solieri took her to the emergency department for what would be the first of eight visits in six days. Arianna was originally prescribed antibiotics for a urine infection, but she was still “in so much pain” the next day.
“It was waking her up in the middle of the night, and it just was not normal at all,” Solieri said.
Arianna returned to urgent care where she was told to continue with pain relief and antibiotics, but her mother was not happy with the fact that she wasn’t improving and booked an appointment for Arianna to see her doctor where they took X-rays and blood tests.
“I took a photo of the X-ray because I just knew you know when you have a gut instinct that something isn't right? Something wasn't right,” Solieri said.
Arianna was back in the emergency department that night, and doctors said her infection levels and inflammation markers were high.
“They actually said to me, ‘We suspect something like sepsis or even meningitis,'” Solieri said.
They were told to go home again, but a nurse administering Arianna’s antibiotics agreed that her temperature shouldn’t be that high. Doctors then thought she might have long Covid, but Solieri thought that seemed unlikely since Arianna was asymptomatic when she first had it about two months ago.
“I said, ‘That there is something underlying, we just don’t know what it is,'” Solieri said of being asked about her “gut instinct.”
And thanks to her motherly intuition, Arianna was able to receive a heart and kidney ultrasound that revealed a tumor above her kidney,
“It was just the worst few hours of our lives,” Solieri said. “It was just horrendous, because it went from literally nothing to nearly a week later, this.”
Following MRI scans, doctors eventually diagnosed her with stage 4, high-risk neuroblastoma that had spread to multiple bones and her bone marrow. Now, Arianna is undergoing aggressive treatments that will likely last between 18 and 36 months. So far, she’s had six rounds of chemotherapy that have left her with side effects like extreme nausea, lack of appetite and hair loss. But she has a long road ahead with more chemotherapy, surgery, high-dose chemotherapy, radiotherapy and immunotherapy to come.
The little girl will also likely have an operation to preserve her ovaries, though it’s thought that treatment will likely make her infertile. And to give their daughter the best chance for success, Arianna’s parents are raising money to afford further treatment that she’ll likely need in the United States like the Bivalent vaccine which is currently in the clinical trail stage.
“It’s a bit hard to take really we're 10 weeks in nearly and it's still very fresh,” Solieri said. “I still don’t quite understand how we got here.”
But even still, Solieri is hopeful for her “warrior” little girl.
“We call her our little Wonder Woman,” she said. “She loves Wonder Woman and anytime she has procedures or anything like that, she likes to wear her Wonder Woman or Super Woman outfit because she feels stronger.”
Understanding Childhood Cancer
Treatment advances in recent decades have lead to 84 percent of children with cancer now surviving five years or more, according to the American Cancer Society. This is up from 58 percent from the mid-1970s.
But according to the National Pediatric Cancer Foundation, more than 95 percent of childhood cancer survivors have significant health-related issues because of the current treatment options, and only 4 percent of the billions of dollars spent each year on cancer research and treatments are directed towards treating childhood cancer in the United States. Since 1980, fewer than 10 drugs have been developed for use in children with cancer while hundreds of drugs have been created exclusively for adults.
Dr. Elizabeth Raetz, director of pediatric hematology and oncology at NYU Langone's Perlmutter Cancer Center, reminded us in a previous interview that there is still reason for hope.
"There are also targeted treatments and different immunotherapies that have been studied in adults and have now moved into clinical trials for children and there has been a great deal of excitement in the community about that," Dr. Elizabeth Raetz told SurvivorNet.
Caring for a Child with Cancer
Still, navigating a child's cancer diagnosis can be tricky. And it’s incredibly hard to watch your child suffer as Solieri knows all too well.
"She does get really sad when she can’t see her sisters and when she can’t just get up and just have fun and be a normal five year old," Solieri said of Ariana. "She really misses school. She really misses her friends and she talks about them so much."
Similar to Solieri, Jayne Wexler knows all about filling the simultaneous roles of parent and cancer caregiver. Her son, Justice, was diagnosed with ALL, but he has since recovered. In a previous interview with SurvivorNet, Wexler explained how she managed to be a mother and a caregiver all at once.
"I Try To Stay Strong, But Sometimes You Need To Cry": Playing The Role of Cancer Caregiver and Mom
"Being a caregiver is a huge job," Wexler said. "Fortunately, my husband and family were very supportive … it's really hard to see your child go through this. If it could be me, I would take it in a second. You just go on auto-pilot and you just do what you have to do."
But that doesn't mean it was always easy. Wexler admitted that as a parent caring for a child with the disease, you don't have a lot of time to sit down and deal with your own emotions.
"You don't have that much time for yourself," Wexler said. "I try to stay strong, but then sometimes you just want to go and cry, and you need to cry… it's good to cry."
The Impact of a Childhood Cancer Diagnosis on the Whole Family Jayne Wexler Shares Her Story
The survival rate for children with cancer has improved over the past few decades, but childhood cancer is still an incredibly hard thing for a family to go through. In her own caregiving experience, Wexler found therapy to be a great way to process everything happening to her family. Regardless of whether it's therapy or participating in your favorite activities or something entirely different, it's important to find ways to also take care of yourself as you're taking care of your child.
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