Korbin A.
Alabama
Birth Date - September 10, 2015
Diagnosis - Anaplastic Ependymoma
Theme: Realistic Dinosaurs
Due Date: 4/1/19
Korbin's Story
Korbin was just diagnosed in August 2018 with Anaplastic Ependymoma. It is a rare genetic, most often, cancerous tumor in the brain. It started with him losing ability to use his left arm. The original diagnosis was Nurses Elbow. Within 24 hours he lost ability to use his entire left side ... arm, leg and face.
A Cat Scan showed an abnormality, and he was rushed by ambulance to Scottish Rite Hospital in Atlanta, GA on the 12th of August. It was in that very moment that our whole lives were turned upside down. Upon arriving we were told that the tumor originally believed to be the size of an acorn was actually the size of a LEMON. We were instantly sick to our stomachs. They told us he needed to have surgery ASAP.
The neurosurgeons, Dr. Boydston and Ralston were amazing. They performed the surgery on the morning of the 15th. They said our little guy wouldn't be able to use his left side for at least a week. They spoke of possible physical therapy to learn how to walk, use his left arm, and speech therapy. (His speech was effected and he now has a stutter while attempting to enunciate certain words.) He came out of surgery sooner than expected. The surgeons explained to us that they were forced to leave behind 1% as it was connected to his motor function. Had they attempted to remove it, he could have been paralyzed. Their mission was to restore use of the left side, and not cause further damage. He came out of surgery using his left side, thank God!
We were told it would take 5-7 days to receive the pathology report as their preliminary report was 50/50 on chance of it being malignant or benign. They just didn't know. On the morning of the 28th we got the phone call we had been ever so dreading but anxiously awaiting ... the pathology report. The doctor said it was anaplastic ependymoma, a rare genetic malignant tumor. Our hearts sank to the floor as we attempted to listen and absorb everything the doctor was saying.
The moment we hung up the phone our eyes filled with tears as we began to imagine the long road ahead of us. Our sweet, energetic, funny, special little boy has cancer. How do you even process such a diagnosis? The survival rate for ependymoma is around 40-50% for only 4 or 5 more years. When you have anaplastic attached to the diagnosis, it drops those odds to around 30%. I couldn't even swallow.
The plan was to do chemo and radiation. They will moniter to see if the cancer has spread. The location of this particular disease is what makes it so deadly. It's the only organ you can't replace. It has a direct line through the spinal fluid to the remainder of the body. Thousands of people prayed and little Korbin has defied all odds thus far.
We hope that Korbin's story touches the hearts of people and helps to restore relationships. Life is too short and fragile to hold onto any grudges. Make amends where needed. Take advantage of each day. Conquer life! You never know when something like this may happen to someone you know and love.
