Jareth L
Indiana
Birth Date: 12/30/2009
Diagnosis: Diffuse Leptomeningial Glioneuronal Tumor
Theme - Realistic North America Animals (1 Polar Bear, 1 Fox requested)
Due Date: June 1, 2023
Jareth's Journey
Sunday, August 7th of 2022 was a life-changing day for me, my husband, Aaron, and most importantly,
our 12-year-old son, Jareth. It began as a typical day for us, Jareth woke up with a severe headache for which he had been recently prescribed meds, crying out every few minutes when a wave of pain crashed over him.
I remember Aaron and me hovering over him that day because it had been a really rough night for him. It was hard to see him in such pain but it had become the norm for us, and we had begun seeking treatment not long before that so our focus was on pain management for the present moment.
After a while, his pain died down and he drifted into a much-needed sleep. It was only a couple of hours before our poor kiddo woke up in severe pain again, way before the meds should've worn off, but this time it was different. He began vomiting and complaining of his face and arm being tingly.
I remember rushing him to the local emergency room very well; my uncle, cousin, and Aaron were bringing in our new washer and dryer as I hurried Jareth into our car. It seems weird that I remember this so vividly, but most of the events after were a blur.
They did a CT scan and bloodwork and it took hours before we had any results. The scan came back and the Doctor said they suspected a Chiari Malformation, and that they were reaching out to Riley Childrens Hospital to see if he needed to be transferred there. Everything at this point was so fast that I can hardly remember everything that was said, but we learned that he had swelling of his optic nerve and hydrocephalus, which is a build-up of spinal fluid on the brain. The next day, August 8th, he had the first of three surgeries, this one was to place an External Ventricular Drain.
By Wednesday morning they told us they were concerned about abnormalities seen in Jareth's brain and along his spinal cord, that they suspected cancer, and had scheduled a biopsy of his spine for August 12. In one week we went from a relatively healthy child who had been experiencing headaches to a child with brain and spinal cancer. He has gone from slight issues with one of his legs to being unable to get around without a cane, then a walker, then a wheelchair, to now being back to using a cane but only sparingly.
We are in week 2 of Proton Radiation Therapy and so far he has experienced no side effects except some fatigue, which we will gladly take for a chance at recovery. We are taking this one day at a time and hoping for the best outcome for Jareth. We want to share our story with others so they may feel comfort knowing they aren't alone and keep a sense of community surrounding us so we don't fall into the pit of despair that we are on
the edge of. We want nothing but the best for our kiddo and every other kid who is fighting childhood cancer.
"He loves it.. He has been doing well recently ❤ thank you all so very much for the quilt."
