Mar 19, 2019 Latest post:
Nov 29, 2022
Welcome to our CaringBridge website. We are using CaringBridge to keep our family and friends up to date in one place with one simple post! For those of you that we have recently met here is a very shortened version of what's been happening with Jay since 2010. We were in Ohio, caring for our nieces and nephews, when Jay went into a Complex Seizure. They did an MRI scan and it revealed a brain mass. His 1st brain tumor resection was November 2010 and after biopsy we discovered Jay had a WHO Grade II Oligodendroglioma. At the time we were in our late 20's and blessed to be very nieve believing that was the end of this journey. However, the tumor came back and Jay had his 2nd brain tumor resection followed by grueling chemotherapy and radiation treatments. Prior, Jay had still been working as a Data Analyst but afterward, Jay developed intractable seizures. After several miscarriages, we were expecting our first child, and Jay was having up to 20 seizures a day throughout my pregnancy. We moved forward with the recommendation that Jay have his 3rd brain surgery, in hopes that the seizures would be under control before our baby was born. They removed the seizure focal point of his brain on December 2013; and our son Jayken was born January 2014; they came home from the hospital/rehab on the same day together. The expectation, was that Jay would return to work and a "normal life" after significant amounts therapy; however, the surgery left him permanently disabled. In March of 2015, the tumor returned, and this time they attempted to treat it with Gamma Knife Surgery (radiation directly to the tumor site); this was unsuccessful so Jay began chemotherapy. In July 2015, testing of the spinal fluid revealed that Jay now had Spinal Leptomeningeal Metastases (cancerous tumor cells in his spinal cord). They placed an Ommaya Reservoir (in his head and connects to spinal cord) so he could receive chemotherapy through the Ommaya Reservoir directly to the brain and spinal cord. Complications arose when August 2015, they found that he had reservoir associated Meningitis. They continued treatments until November 2015 when his spinal fluid had become clear of cancer cells. We had 4 years of learning to raise our son along with Jay's recovery and adapting to his disabilities before finding out the Spinal Leptomeningeal Metastases returned in November 2019, they treated it with chemotherapy through his Ommaya Reservoir again, and his spinal fluid was clear again by November 2019. In October 2020 his brain tumor returned and he had his 4th brain surgery, another resection of his tumor, and the biopsy revealed the tragic news that the tumor had become an Anaplastic Astrocytoma Grade III. The tumor resection was followed by a year of chemotherapy and significant Physical, Occupational, and speech therapy after Jay lost the use of his right arm & leg, had not returned to baseline with Expressive Aphasia, and struggled with balance and gait.