In October 2017, we were a normal working dad and mom with two amazing, happy, and healthy boys.  Blake was 14, almost 15. He was looking forward to driving and a little independence. Jace was four and wanted to be just like his big brother. Blake was Jace’s protector. His “Bake.” We were living the dream; life was good. We did everything as a family…. eating out, shopping, and vacations at the beach. We were always together.  Life was normal and proceeding at a happy, comfortable, and content pace.

 

On Sunday, October 22, 2017, Eric, Jace, and I worked outside in our woods.  Jace eats, sleeps, and breathes outside. We always referred to him as our little shadow…. our precious and cute little shadow. As we worked, we noticed Jace walking up the driveway.  He was walking a little differently.... a little "off.” We continued to watch him throughout the day. His gait seemed to change intermittently from normal to a slight limp. It didn't raise serious alarm bells, but we knew we'd take him to the doctor the next day just to be checked. 

 

Monday morning, October 23rd, we took him to his pediatrician. Jace’s pediatrician sent us to the hospital ER where they performed a CT scan. The doctor came into the room about 45 minutes later with the results. She said, “Jace has a mass on his brainstem and needs to be transferred to Levine Children’s Hospital in Charlotte, NC.” We were devastated. (The doctor gave us this news in front of Jace. He saw our reaction. We saw fear take over Jace's face). Jace was transferred by ambulance to Levine’s and was immediately admitted. This is the day our entire wonderful, beautiful life imploded upon us. We had not been told that the tumor was inoperable, aggressive, or deadly. We knew nothing more than that Jace had a mass on his brainstem.

 

Later that evening, the pediatric oncologist came into Jace's room to speak with Eric and me. We could sense that the news was not good. It was all over the face of the doctor. He told us he had scheduled Jace for a full head and spine MRI immediately, and it would require Jace to be under complete anesthesia. Jaws wide open. Disbelief.  Still.  We waited. Delay....the MRI wouldn't take place until the next morning. The delay and waiting were so very painful.  

 

On Tuesday, October 24, 2017, we waited all day and into the early evening for Jace to be taken for his MRI.  He was so hungry and scared. Poor Jace had NO idea what was happening to him, and there was nothing we could tell him to calm his fears as we did not know. Finally....late in the evening, Jace was taken back for his MRI. Now we wait.  

 

On Wednesday, October 25th, 2017, Eric and I were seated at the end of a long conference table as the oncologist entered the room. Again, we could tell from his face that the news was not good. “Jace has a tumor called DIPG. Diffuse Intrinsic Pontine Glioma. It is inoperable, and the only treatment is a palliative 30-day regime of radiation. I suggest you go home and make memories with Jace.”

 

NO! NO! NO! This cannot be happening.

 

The nightmare had just begun for Jace and our entire family. We had no idea what the next 347 days held for Jace or us as a family.  There is no way I can put into words every living nightmare DIPG brought to our lives.  DIPG is NOT pretty. 

 

Jace died at home with his daddy, brother, and me by his side.  He bravely and courageously fought all he could for 347 days.  It was a valiant effort on his part, but DIPG was just too much for his little body to handle.