Gray is the New Pink- CG

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Caiyden's  story is truth be told a blessing in disguise, if it wasn't for the accident at school that day we would have gone even longer without knowing that she had this terrorist growing inside of her head, But I digress, I had arrived at the school to pick her up in the afternoon in the school pickup line and immediately noticed that something was wrong. She was swaying, her pallor was ghost like and she was holding her head. She got in the car and tells me her head hurts, lays her head down and says she is nauseous. She is textbook concussion syndrome, I call her pediatrician and tell him that I am taking her to East Tennessee Children's Hospital is he on call because his office will be closed before we can get there. I have a 45 minute drive to the hospital. In the mean time she begins to hallucinate and regress in age. Instead of a 13 year old, I am dealing with a 5 year old in the passenger seat. NOT GOOD IN TRAFFIC! I abandon my car at the door, get her inside they take us straight back, I was able to get the full story from my child of what had happened to her during the school day. In Band she was walking to play the Timpani(large Kettle Drums) slipped on a case and fell hitting her head first on the metal base of the Timpani and then hitting her head on the floor. Her Instructors checked on her and she told them she was fine, it was near the end of class, went to her final class of the day. This teacher also checked on her as she was starting to develop symptoms but as my child has a high pain tolerance once again said she was okay it was the end of the day, but she was not okay. After tests, bloodwork, CT, threats of spankings a child because she is literally climbing the wall(I felt like I had a toddler again), I get the news that we have a subarachnoid hemorrhage on the left side of the brain. NOT WHAT A PARENT WANTS TO HEAR EVER. I sit there in stunned silence for a moment, then once again in Nurse mode I begin to make the calls to those family members that I need to make. I wake up her father(he is a Nightshift LEO Sargent, sleep is precious), her nana and make arrangements for our oldest daughter to stay with my sister after she takes care of the furbabies. Then I turn and listen for the news of possible surgery and that she has a large mass as well that appears to be a hematoma. I just pray God give me strength and watch over my child. What more could I do, he is  the Great Physician. , We later get news that surgery is not necessary and that the hematoma will shrink, she will just have to be followed by the Neurosurgeon. Two months go by, headaches are increasing and things are not going as planned. We are sent to get her eyes checked. He sees something wrong with her retinas, I immediately take her to a retina specialist(I am lucky to know one), Houston we have a problem! She then collapses on the softball field and has a seizure. Calling for backup, Neurosurgeon meet Neurologist. We do not even make it out of his office we are whisked straight over to East TN Children's Hospital and admitted for another bleed.  Begin new battery of tests, MRI, MRI angiogram, CT, Lumbar puncture, bloodwork. But this time; there it is, on the T2 and the Flash. Brain Tumor- First Diagnosis August 2018 Age 14 Focal Cortical Dysplasia with Lesion, treatment plan is to treat with medication and rescan every  3-4 months with new MRI for possible deterioration and evaluate for surgery/new plan. We continue this plan over the next year, she continues to get worse, more headaches, trips to the ER, missing school and having seizures. I decided to get a second opinion because I felt that playing the waiting game wasn't benefiting anyone let alone my daughter. September 27, 2019 New Diagnosis-3 days before her 15th birthday low grade neoplasm- receive call from Neuro-Oncologist at Cincinnati Children's Brain Tumor Center.  She has a Ganglioglioma/Astrocytoma Brain Tumor. They begin to make plans for treatment and for us to come to Cincinnati to meet our team of doctors to start our journey. We will be making several trips to Cincinnati Children's Brain tumor Center for treatment beginning with the first trip in the upcoming couple of weeks to start treatment of her seizures which will be at least a week long visit then several trips back to map the tumor and decide when the resection will take place along with any other needed therapies.