On August 4th, 2011, at two years old, Carsyn was diagnosed with Stage 4 HR Neuroblastoma. He was told his chance of responding to treatment was slim. The cancer had spread everywhere except one bone in his arm. After starting the Children’s Oncology Group protocol, Carsyn went on to have multiple rounds of high dose chemotherapy and many rounds of experimental immunotherapy. He responded well to this treatment and seemed to make it to remission.
Carsyn had no evidence of disease for eight years until November 4th, 2020 when he was diagnosed with relapse Neuroblastoma. This relapse caused Carsyn to lose sight in his right eye due to a baseball size tumor in his face that compressed his optic nerve which caused permanent damage. He went through 2 rounds of chemo in November and after consulting with renown relapse Doctors at Children’s Hospital of Pennsylvania he was transferred care as they are experts in genetics. His treatment plan ultimately changed when Doctors found Carsyn to have an ALK mutation. He was put on a very aggressive plan taking trial drugs to give him a fighting chance. Carsyn has responded incredible to this drug but not without major side effects. He has had major weight gain, swelling in his extremities, neuropathy, high cholesterol & psychosis. These are all side effects of the drug and as of now he will be on it indefinitely.
Carsyn is 12 years old and is living his “new normal” life. His friends and family are amazed by his courage and strength during his fight. “He is truly our miracle boy & despite all he has endured he has learned to adjust with the loss of sight/hearing & still is pushing himself to play his favorite sport, soccer, do well in school and enjoy his video games”.
Throughout his journey the number 22 played a big role and was a sign numerous times that all would be ok. Carsyn has been wearing “22” on all his soccer teams since he started playing at a young age. #22 is very important to his family and has been a sign of hope and has helped his family to keep on believing. #CourageForCarsyn
Carsyn is a member of We Can Kick It, an organization providing free soccer programming to children affected by cancer. We Can Kick It’s programming aims to provide a fun and inspiriting environment for kids affected by cancer to play and learn the game of soccer. To learn more about We Can Kick It visit their website, wecankickit.org.