Please join me in support of raising money for Neuroblastoma Research!
September is Childhood Cancer Awareness Month and I wanted to share some of my family's personal journey with Neuroblastoma to raise awareness of the realities of childhood cancer.
https://www.cbsnews.com/amp/philadelphia/news/5-year-old-giving-back-to-alexs-lemonade-stand-foundation-after-her-own-cancer-battle/
My daughter, Arianna diagnosed at 13 months old after having episodes of vomiting and fevers, and finally she stopped walking. When she was brought in to 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 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 relapsed survival rates can drop to 5%. Frontline treatment for Neuroblastoma is 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, two stem cell transplants, radiation, a very painful immunotherapy called Dinatuximab which is done in tandem 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 Ari, 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 A the terrifying pain response or DFMO, a polyamine inhibitor which prevents the cancer cells from maturing. We chose DFMO and A was accepted into the two year trial in May 2021. As of March 2020 A has been no evidence of disease, or NED. We can’t say “remission” but we celebrate this fact.
In May 2023 Arianna completed the DFMO trial which was a twice daily oral medication she chewed and chased with a Hershey kiss. Her most recentscans showed she is still no evidence of disease (NED). She has had her port removed, G tube removed and is living her best life.
Arianna has recently started kindergarten and joined a cheerleading squad. She is 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 this little one's victory over cancer. Please join me in fundraising to support research to eradicate this brutal disease.
