Raise awareness and funds towards finding a cure for Pediatric Pineoblastoma. Pediatric cancer research currently only receives 4% funding from the government. We need more than 4%!
Raise awareness about pineoblastoma
All Donations and proceeds go to the Child Cancer Research
All products purchased through Jaxen's Journey website go towards Cancer Research
Our son Jaxen was born to us at 38 weeks on September 4, 2013 a Mon General Hospital in Morgantown, West Virginia. What a joyous time! Myself, Kim and Brynley were so, so excited to have Jaxen in our family. As excited as Kim and I were, I think Brynley may have been the most excited since she would now be a BIG sister.
Like the birth of Brynley we were lucky to have my parents and Kim’s mother come down just in time to share his birth.
We brought our son home after a few days and we were off and running. Our family complete, one beautiful daughter and now my son, my first round draft pick, my wrestling buddy, the one I would play catch with outside and most importantly someone to take care Kim and Brynley if anything were ever happen to me.
He was such a happy baby. Always giggling and smiling. He made us so happy in so many ways. He would lay his head on Kim’s shoulder and slowly fall asleep often, one of Kim’s favorite moments….as if he perfectly fit her. As he slowly grew into a young boy he seemed to always be into something. Kim would call him her “little monkey” or Mowgli because he would crawl on his hands and feet and get into everything. Crawling and pulling himself onto anything in his path. He was into adventure and loved every minute of it.
As he continued to grow he continued to delight us all. As he began to walk, all bets were off. He was EVERYWHERE…all the time. Running around in the house, outside and anywhere he could find space. Kim and I enjoyed this so much…..Brynley to, except for the pulling of her hair! He was a little dude, but tough. He LOVED to wrestle, growling and wrestling with me any chance he could get. I remember that growl, then giggle and he would come charging at me as fast as he could.
His first birthday was awesome, just awesome. Kim of course was on it, nice cake, decorations and the whole nine yards as she always does. Of course, we had the cake smash as well….if I remember right my little buddy shoved some in my face as well!!
A milestone I guess……of course as a parent we thought we would have several other birthdays…
As a father, the first year can be tough. A child needs to be with his mother to feed and be comforted. Now at age of one, the breastfeeding stopped and he and I began to “hang out” a bit more. Jaxen never, ever slept through the night so we ate breakfast every morning, usually around 2:30 am….he was always wide, wide awake. He would usually stay up for an hour or so then we would wake up at 630 and eat again. He loved playing outside, chasing the bigger kids and of course getting into mischief. What an awesome and fun year for the family. Brynley loved him so much, Kim and I were so, so happy. A beautiful boy and beautiful girl….just as her father had foreseen before he was called to heaven.
The second birthday came, Disney theme this time, and man oh man did we all have an awesome time. A year older now, he ripped through his presents and played with his toy cars, stuffed animals and other toys. Jumping around, climbing around and just being a boy….a happy boy, excited about life and loving every minute of it.
Then the wheels fell off…..slowly at first, then in such a hurry we didn’t know what hit us. As I returned home from work on a summer day in June, Kim mentioned Jaxen fell at daycare and probably had a concussion. I thought, this happens to kids often…no worries. A few days passed and he was vomiting on and off…but more importantly stumbling around. We took him to the hospital to get looked at, they did a CT scan and didn’t see anything. Again, Kim and I weren’t too, too worried so we took him home. After another day or so we were right back but this time things were different. They did another CT scan and an MRI on his brain……..things would never ever be the same……..ever.
My son, our son, Brynley’s brother had brain cancer. The panic began. We had no idea what hit us….I remember pulling in the driveway at night and seeing a neighbor and saying for the first time…”Jaxen has brain cancer”. As the first few days passed, we were given three names of virtually untreatable and deadly types of brain cancer….hoping Jaxen didn’t have one of these. Well, our hopes and fears all came true when he was diagnosed with Pineoblastoma, one of the rarest and most fatal pediatric cancers around.
Kim and her research began and we quickly knew we were fighting against all odds. Jaxen was hurting so much, you could see it in his eyes. First things first, a shunt was drilled into his skull to relieve pressure as a plan of attack was being put together. Unfortunately, the cancer wasn’t just in his brain, from day one it was also all the way up and down his spine…..So hard watching him cry and grimace in pain…sitting there day after day helpless….
Two weeks after the diagnosis, one of the countless MRI’s came back and I remember our oncologists meeting us in the room saying they have never seen cancer grow so fast, so soon and that the next 24 hours were critical! Tough pill to swallow not knowing if this was it. Jaxen wasn’t quite ready yet…he hung on.
At such a young age radiation is not an option so the chemo began, but it didn’t last long, not even one cycle, as my little warrior was weak and even though he fought with all he had, he couldn’t overcome such a burden. Like a scene from ER or Grey’s Anatomy, on July 24, 2016, things got crazy. I have never seen so many doctors, nurses and aides fill a room so fast. Kim and I just looked at each other knowing this was time. I will not describe the scene as it has replayed in my mind thousands of times…..but the feeling of seeing your son lose his battle is something no parent should ever have to go through. Five weeks to the day of the diagnosis, Kim, myself and Brynley had lost our Jaxen.