Massachusetts General Hospital Cancer CenterGoryeb Children's HospitalNYU Langone Medical CenterWeill Cornell Medical Center, New York-Presbyterian
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My Story
After surviving birth at 25 weeks and a 100 day NICU stay, shortly before Connor's birthday a mass was found on his brain. This mass was not any mass, but something none of our doctors have ever seen before with less than 10 cases documented worldwide, a rhabdosarcoma of the the CNS. Connor endured 2 brain surgeries, 3 port surgeries, 6 rounds of high dose and highly toxic chemotherapy, 7 stem cell retrievals, 28 rounds of radiation, over 130 nights in the hospital away from his twin and 7 weeks away from home in Boston. We finished his intense protocol 10 months after we started, to find out in his post treatment scan that four new tumors were growing and one in the pons area of the brain which is inoperable and already received its lifetime dose of radiation. That day we moved from cure to care and tried to fit as much life and love into the time we had left. He will always be #supercon.
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