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Arianna Hines

  • Neuroblastoma

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Arianna is a firecracker of a 5-year-old. She is loving, empathetic, and bold. She loves school and her friends and is always on the move. She inspires those in her life every day with her tenacity and spirit!

At a mere 13 months old, Arianna began having vomiting and feverish episodes. When she stopped walking, her parents brought her into the ER, where they discovered that her right femur was broken. Initially, doctors treated it as an injury and put a cast on her leg. But her blood work showed some abnormalities. Arianna had CT scan done which revealed that this had been caused by a tumor having broken her bone internally. It also revealed the primary tumor near her left adrenal gland. It was larger than her liver.

Arianna was diagnosed with Stage 4 high-risk neuroblastoma MYCN amplified.

Her parents were scared. This diagnosis only comes with a five-year survival rate of 50% and a high rate of relapse, after which, survival rates can drop to 5%. Frontline treatment for neuroblastoma is as aggressive as the disease itself, where medical professionals often have to bring children to the edge in order to save their lives.

Arianna began an 18-month period of active treatment at Duke, her home hospital in North Carolina. Treatment required a port to be placed in her chest and her back. She had an NG tube then eventually a G-tube, a surgical addition to allow feeding directly into her stomach. This was not without risk, as her G-tube surgery actually punctured her stomach and she went septic. For the treatment itself, Arianna underwent five rounds of high-dose chemotherapy, a tumor resection for the primary tumor in her abdomen (leaving her with a six-inch scar across her tiny tummy), two stem cell transplants, radiation (which she needed two weeks of daily sedation to receive), and a special immunotherapy. This immunotherapy, called dinatuximab, targets pain receptors which makes it painful to receive. Arianna was scheduled to take it inpatient for 10-hour periods of time over five days. Unfortunately, she had an extreme adverse reaction, causing her pain to be higher than her medical team had ever seen.

No amount of pain medication seemed to help for days, so Arianna’s team had no choice but to sedate her and send her to the PICU. She spent her second birthday in the hospital.

Then, in December of 2020, Arianna tried naxitamab, a similar immunotherapy that was only offered at Memorial Sloan Kettering in NYC. In the middle of a global pandemic, Arianna and her mother traveled from North Carolina to New York to find her cure, but sadly this caused the same horrible reaction. Arianna ended up skipping the immunotherapy portion of treatment altogether, and instead continued with Accutane. She finished frontline treatment in April 2021.

By this time, Arianna’s oncologist said she only had a 50% chance of survival.

Due to the enormous risk of relapse, Arianna had two options from here: a vaccine trial through Memorial Sloan Kettering, which targeted the same GD2 receptors that gave her the terrifying pain response, or DFMO, a polyamine inhibitor which prevents cancer cells from maturing. Arianna and her family chose DFMO. She began the two-year trial in May 2021, a twice-daily oral medication she chewed and chased with a Hershey’s kiss, and as of March 2022 she has had no evidence of disease! They can’t say “remission”, but her family celebrates this status.

More recently, she completed the DFMO trial, and her end-of-treatment scans have shown that she is still clear of disease! She has had her port and G-tube removed, and she is in preschool full time living her best life. Although there is no guarantee what the future will bring, for today, her family celebrates this amazing kid with a fierce spirit and an infectious laugh’s victory over cancer.

Arianna’s mother, Leah, hopes that Arianna lives a long and happy life. “Ari is a world changer,” she said. “She has a vivacious spirit that lights up a room and she has overcome every obstacle with a positive attitude. She is truly a miracle.”

To those who may also be facing a childhood cancer diagnosis, Leah says that while it is a long road ahead, there is hope! Accept the help offered from friends and family and know you are not alone in this. To take their support further, Leah and Arianna’s family have fundraised for Alex’s Lemonade Stand Foundation (ALSF) and participated in The Million Mile for Childhood Cancer Awareness Month in September 2023.

“[ALSF means] hope for a cure for our precious children,” said Leah. “They deserve SO MUCH MORE than 4%.”

"I'm brave and I'm strong. I can do hard things!” – Arianna, her hospital mantra

Information provided by Leah H., Arianna’s mom
Updated March 2024

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