Jace has DIPG......
In October of 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 4 and wanting 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, 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 were outside working in our
woods. Jace eats, sleeps and breathes being 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 looked at.
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’s 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 the 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. At this point we had not been told that the tumor was inoperable, aggressive or deadly. We knew nothing more than 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 most likely 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 be under complete anesthesia. Jaws wide open. Disbelief. Still. We waited. Delay.....the MRI wouldn't take place until the next morning. The delays and waiting is 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, too, 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 found ourselves sitting at the end of a long conference table as the oncologist sat down. Again, we could tell from his face 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 for 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.
Now I am adamant in my vow to fight, until I leave this earth, for more funding for DIPG Clinical Trial Research and to TALK about DIPG. It is time to have many conversations about DIPG and its effects. What I have learned during our long and difficult fight to save Jace has fueled my determination to ensure other children diagnosed with DIPG, have hope for better treatments, are given at least the chance to fight this horrific disease and hopefully have a long future with their families. These children don’t deserve to be written off simply because of this diagnosis.
A Message from Jace’s Mommy:
Eric and I are career law enforcement officers. We’ve dedicated our lives to helping others. That same passion will carry over into our battle against DIPG. We know first hand what DIPG does to these children and their families.
We are adamant in our vow to fight, until we leave this earth, for more funding for DIPG Clinical Trial Research and to TALK about DIPG. What we have learned during our long and difficult fight to save Jace has fueled our determination to ensure other children diagnosed with DIPG have hope for better treatments and are given at least the chance
to fight this horrific disease.
We will do everything in our power including speaking to whomever we need to, to help raise awareness and to raise funds for research. The time is NOW. We must begin today to raise more money to help fund the researchers, doctors, and medical professionals that have made it their life’s mission to find that breakthrough that will begin the process for finding the cure for DIPG. I will be
I am Jace’s mommy and will forever be his advocate.
Thank you for reading about our sweet baby boy.
Warrior Jace Foundation
Eric, Jennifer, Blake and Jace Thompson
Mount Pleasant, North Carolina