Jax’s Journey,Tiny Warrior Fighting A Brain Mass

Let’s see.. where to begin the story of the bravest little guy I know. My names DeOnna, but the kids call me Tia. I’m a bonus Aunt to this amazing little guy, his big brother and big sister. I’m starting this campaign to help the family out with the enormous amount of medical bills for Jax. Everything that is donated will go to the bills that are just piling up.


Let me tell you a little bit about his pretty amazing parents and siblings. Meagan his mama is a registered nurse; she went from full time to PRN (as needed) to make sure she has a very open schedule if anything came up and she needed to get Jax to the doctor she could. Jacob his dad is a veteran who served in the Marines and proudly serves his community as a cop. Not only do they have this little warrior to worry about but they also have an older son Blaze he’s 8 and a daughter Hadley she’s 5. Trying to raise a family and have 2 careers while dealing with something no parent wishes is by no means easy. Meagan and Jacob take it in strides they hold their heads up and smile and continue to push forward.

I learned about Jax brain mass about a year ago. It breaks my heart to see what he and his family are going through.. This little man can light up a room just by his smile. To know that there is uncertainty in his future destroys me. I love him and his siblings as my own.

It is with a heavy heart, a guilty conscience & all pride being set aside that we start to tell Jax’s story & hope that along the way we can get as many prayer warriors as possible on his side and possibly raise some money to help pay for his medical costs, which have become insurmountable; even with insurance. I (Meagan) have had to take off of work a lot, due to the nature of this & Jacob has as well. It’s taken quite the toll on us as we are also trying to help Jacobs grandparents navigate their way through life now living in a facility plus the heartache that comes along with Jax’s story. It seems as though we are always filling up a car with gas, buying extra food for those trying to help us and just get by after the “required” amount is paid upfront to have Jax’s procedures done. 

I will sit and write a “...one day it all started here...” story very soon so that those who don’t know how this came about, how we “found out” or if you have questions, you can reference it without feeling confused/lost in this whole thing. 

Jax has a lesion on his brain, more specifically his Cerebral Peduncle/Pons (just left to his brainstem). We found it almost 1 year ago & he has undergone multiple procedures since then. To name a few...several MRI’s, CT Scans, serial labs (where he went in daily, 5 times per week for 4 weeks to get blood drawn), a Spinal Tap, a Sleep Study, an EEG, an EKG, an Echocardiogram...& the list just continues. 

Each time we see someone, they look baffled & say “hmmm. Well this could be really bad or nothing at all, but it’s hardly ever nothing when it’s in this location.” As a mother, I’ve been looked in the eye and told “even if it is cancer, I’m afraid there’s no treatment for it, nothing we could do for it anyway. If/when symptoms arise, typically patients live about 15-20 months at at most.” 

DIPG-  that’s what we are potentially facing. Diffuse Intrinsic Pontine Glioma. 

What is DIPG? This is from St. Jude’s Website, defining DIPG. 

•DIPG is a type of tumor that starts in the brain stem, the part of the brain just above the back of the neck and connected to the spine. The brain stem controls breathing, heart rate and the nerves and muscles that help us see, hear, walk, talk and eat. These tumors are called gliomas because they grow from glial cells, a type of supportive cell in the brain. Unfortunately, the survival rate for DIPG remains very low. At this time there is no cure for this tumor. -stjude.org

The doctors have no idea yet if that’s what it is exactly. It’s their number 1 suspicion; but it’s not a for sure diagnosis. The average age of diagnosis is 5-10 years old, so they think they caught Jax’s “early”. 

So we are doing MRI’s every 3-6 months (depending on signs/symptoms Jax shows) to monitor the lesion on his brain, check for growth, enhancements, etc. 

He has an MRI this week, Thursday December 13th to be exact. A doctors appointment the following morning on December 14th where we will discuss the details and our “plan” depending on what we see this time.

His team of doctors are phenomenal, they have conferences with each other to discuss his case, throw around ideas, talk about our wishes as a family, possibilities, etc etc etc. They keep us very well informed & in the loop. 

It’s taken almost a year for me to type this out. To say something is wrong. To ask for help. Why? Because this is every parents worst nightmare. Literally. I didn’t want to believe it, I was in denial, I never thought this would happen to my child & I thought we could handle it...I was wrong. 

Jax is best described as LIFE. He’s full of energy, loves his family more than anything, especially his bubba and sissy, he would live outdoors if you let him, loves farm animals, has a personality bigger than he can even begin to navigate & lights up every room he steps foot in. He’s never met a stranger, loves to shake everyone’s hand he meets and riding horses is his happy place. He’s not a cuddle bug, is stingy with his kisses & hugs and does things on his own time...but that boy is sweet as pie. God knew I needed a Jax. He came the day before his mamas birthday for a reason. I write all of this with tears rolling down my cheeks, because I mean it when I say I need him as much as he needs me. 

Any help you could give would be more than appreciated and go straight to the stacks of bills we owe to Cook Children’s Hospital at the moment and any other medical related expenses we have.