We are holding a fundraiser to help Alex’s Lemonade Stand Foundation move one step closer to finding a cure for all children with cancer and I wanted to share some of my family's personal journey with Neuroblastoma to raise awareness of the realities of childhood cancer.

My daughter, Arianna was diagnosed wirg cancer at 13 months old after having episodes of vomiting and fevers, and finally she stopped walking. When she was brought into the ER, her right femur was broken. Initially, doctors put a cast on her leg and treated it as an injury, until her blood work showed some abnormalities. She had CT scan done and the doctors found the break was caused by a tumor, which broke her bone internally. She also had a primary tumor near her left adrenal gland which was larger than her liver. Ari was diagnosed with Stage 4 High Risk Neuroblastoma MYCN amplified, a disease with a 5 year survival rate of 50%. This aggressive disease has a high rate of relapse, and if relapse occurs,  survival rates can drop to 5%. Frontline treatment for Neuroblastoma is nearly as aggressive as the disease itself. Medical professionals bring these children to the edge in order to save their lives.

This is an 18 month period of active treatment which includes high dose chemotherapy, surgical removal of tumor, tandem autologous stem cell transplants, radiation, a very painful immunotherapy called Dinatuximab which is done in conjunction with cis retonoic acid (Accutane). Treatment required a port in her chest and her back, NG tube (feeding through nose) initially, then eventually a g-tube which is a surgical addition to allow feeding directly into the stomach. This was not without risk, as her g-tube surgery actually punctured her stomach and she went septic. Ari began treatment at Duke, our home hospital in North Carolina. She had 5 rounds high dose chemotherapy, tumor resection for the primary tumor in her abdomen (this has left her with a 6 inch scar across her tiny tummy), two stem cell transplants. She flew through radiation, having to be sedated daily for two weeks straight to receive said radiation.

Next up was an immunotherapy called Dinatuximab. This targets the GD-2 receptors which are also pain receptors so this is a very painful treatment done inpatient over 5 days for 10 hour periods at a time. There should be 5 rounds. Unfortunately for Arianna, she had an extreme adverse reaction and her pain was higher than the medical team had ever seen. She writhed in pain for days with no amount of pain medicine seeming to help. Our 23 pound baby ended up in the PICU sedated as the pain response was so extreme. She spent her second birthday in the hospital. Next, in December of 2020, we tried naxitamab, a similar immunotherapy only offered at Memorial Sloan Kettering in NYC, so in the middle of a global pandemic Ari and I traveled from North Carolina to New York. Sadly, this has the same horrible reaction for her and we were forced to skip the immunotherapy portion of treatment all together. The Oncologist told me bluntly she had a 50/50 chance of survival. We continued on with Accutane only and finished frontline treatment in April 2021.

Due to the enormous risk of relapse, the options were to try a vaccine trial through MSK, which targeted the same GD2 receptors that gave Arianna the terrifying pain response, or DFMO, a polyamine inhibitor which prevents the cancer cells from maturing. We chose DFMO and Ari was accepted into the two year trial in May 2021. As of March 2020 A has been no evidence of disease, or NED. In May of 2023 Ari completed the DFMO. Her end of treatment scans showed she is still clear of disease. As of November 2025 she has officially been declared in remission and no longer requires continued scans. While she has long lasting impacts  from the treatment (severe bilateral hearing loss requiring hearing aids, chronic kidney disease, and trauma from treatment), she is HERE. 

Arianna has been through more than most adults, but remains an amazing kid with a fierce spirit, and an infectious laugh. We can’t guarantee what the future will bring, but for today, we celebrate her victory over cancer. Please join me in raising awareness for this brutal disease.