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Every day, there are almost 700 new cases of childhood cancer around the world. On November 18, 2019, Arden was one of those cases. From a perfectly healthy child one day, to the next day going from the pediatrician to the Voorhees ER to ultrasound to ambulance transport to the Children's Hospital of Philadelphia (CHOP) to hearing "your child has cancer." Just like that, we were a pediatric cancer family.
Arden's diagnosis of stage 4, MYC-N amplified neuroblastoma with ALK genetic variant meant we needed a BIG miracle and a whole bunch of small ones. When Arden was diagnosed, her "Curie score" (a radioactive scan used to detect neuroblastoma) was 27 (out of 30). Almost her entire body was riddled with cancer and her bone marrow was over 80% cancerous. Doctors told us if we could get her Curie score below 5 she may have a fighting chance, but the odds were against her.
Neuroblastoma is rare--approximately 700 cases per year, and the ALK variant is found in only 10% of those cases. Only 50% of children diagnosed with neuroblastoma will survive. Of those, only a portion will survive without a relapse. Doctors at CHOP discovered ALK in neuroblastoma and are using their knowledge, along with Alex's Lemonade Stand funded research, to use crizotinib as a targeted oral chemotherapy to attack this variant. Arden was only the second child at CHOP to be added to a clinical trial for this drug, but, we believe, it has been a miracle worker for Arden.
Arden has completed frontline treatment as of the end of April 2021--6 rounds of chemotherapy, a tumor resection surgery, two stem cell transplants, proton radiation, and a portion of immunotherapy with horrific side effects. All throughout treatment she has been treated with crizotinib and she will continue to take this oral chemotherapy for another year. As of her last scans in April, she has now been "no evidence of disease" for one year. Her Curie score is 0 and her bone marrow is entirely clear of cancer! However, we know that neuroblastoma is sinister and smart, and the only way to truly live without fear of relapse is to find a cure.
Childhood cancer is vastly and consistently underfunded each year with less than 4% of the federal government's total funding for cancer research dedicated to childhood cancers. The burden of funding research, to find less toxic treatments and cures, is left to families like ours who have been deeply impacted by childhood cancer.
Our mission is to raise research funds so every child can have a fighting chance like Arden. The money you donate has the potential to make a huge difference in the lives of kids with cancer. Your donation will go to research into better and safer treatments and more cures. Every dollar brings us hope--for a future with more cures for every family that has to fight like a kid!