Emma is a cheery three year old girl from North Dakota. In December 2017 she was diagnosed with High Risk Neuroblastoma. Her tumor wrapped her thoracic spine and by Christmas 2017 it had paralyzed her permanently from the chest down. Since then Emma has followed a slightly modified version of the COG protocol and has been through six rounds of chemotherapy, three major surgeries, a stem cell transplant, 20 rounds of proton beam radiation, and six rounds of immunotherapy.
Emma cannot be claimed NED because she still has residual disease left in the crevices of her thoracic spine. It's believed that the tumor remaining is either dead or matured, but we don't know for sure as it cannot safely be biopsied. For the time being she will have quarterly scans to make sure there is no disease growth and no new markers for neuroblastoma. Even though she hopes to be finished with treatments she still has a very busy medical schedule. She currently has a large blood clot on her heart that is being closely monitored and treated with blood thinners. Emma gets regular PT and OT to help her manage her paralysis. She hasn't eaten food in well over a year and is fed by continuous tube feeds, which her body has become dependent on to maintain her blood sugars - when Emma is sick and cannot tolerate her feeds she must go to the hospital to get connected to IV. With that said mom and dad take every measure necessary to keep her healthy and home!
Emma loves being home and playing with her baby brother Jack or watching princess movies. When she's not home she enjoys long rides in her wheelchair at Target....SHOPPING!
Lily was diagnosed with Stage 4 Neuroblastoma at just 1 years old. She did COG protocol including stem cell transplant and reached NED for 15 months! But unfortunately, in September 2018 it came back with a vengeance. Lily lost her eyesight. We proceeded to do 3 rounds of chemo with ch14.18 immunotherapy and fought hard to go to MSKCC where we did 23 rounds of humanized 3f8 and then moved on to the vaccine trial. Lily started having headaches and we found out she relapsed again with 8 tumors in her brain. At this time we were in NYC at MSKCC with all her siblings and couldn't come back home. We lived at the Ronald McDonald house for 8 long months. While she was there she was put on Dr Kramer's 8h9 immunotherapy which cleared her brain and then we moved on to oral chemo and accutane to prevent relapse.
Unfortunately, Lily relapsed again in January of 2020. She had only one spot light up on her right femur. She started a trial with high doses of chemo and after a couple of months she was once again clear. Lily is currently NED! She is an amazing little fighter who never gives up!
Lily has 3 siblings and loves pink, unicorns and wonder woman!
Sponsored A Mile: