“My child came into the world fighting! He was born at 2lbs 5oz and after two months, a NICU graduate. Before I knew it, he was a one-year-old; still very small but almost walking and just joyous, all smiles.
One night I put my baby to bed and the next morning I noticed he wasn’t standing to greet me. I picked him up and quickly discovered he wouldn’t stand, couldn’t stand, his legs were completely limp. And so, it began, test after test, specialist after specialist. They found out pretty quickly Jaxson had an abdominal aortic aneurysm, two tumors on his spinal cord, and swelling of his spinal cord. We were flown to Michigan from Kansas and Jaxson had his first surgery and an hour later, his second. His life-threatening aneurysm was gone! He had even regained the use of his legs in the months we were there!
Fast forward six months and Jaxson lost the use of his legs for a second time and has not since regained full use. And it was time to do something about those tumors. We did a year of chemotherapy; traveling 200 miles every week. And joy! MY SON PREVAILED AGAIN! One tumor completely gone and another calcified! With a smile on his face pretty much daily.
Things were pretty great for about a year; just lots of medications and appointments oh and marriage. And then the first of two siblings. Then it was time to have two more emergency surgeries within three months of each other where a total of 60% of his small intestine was removed. He had lost ten pounds off of his very small frame, but his smile remained.
Fast forward four months we had flown to Michigan again for testing and the day came that I was told most of his major vessels in his body had clotted off and he wasn’t going to be able to support a large body mass. I was pregnant with his baby brother at this time and it hurt so much I barely had the strength to get on the plane back home to Kansas. But I did and then we decided we would do everything he wanted to do. Mountains, Disney, Spider-Man, and SO much more! We did it all! And had the most beautiful year of our lives and welcomed another baby into our lives!
The next year started off with internal bleeding. And then they discovered he also had a bleeding disorder. He was great after a transfusion! And we kept on.
That brings us to last year when we were having dear friends over I noticed a rash starting on Jax and his blood pressure was up. I took him to the hospital again for the 1000th time and that’s when we realized his kidneys were having major trouble. We got sent up to the city and then again to Michigan. Jaxson’s kidneys had failed completely by then and he had so much fluid under his lungs he ended up with a chest tube and on the ventilator for over a week. So, dialysis began, and we spent the entire summer in our home away from home, the hospital. Jax and I didn’t end up ever coming back to Kansas. His illnesses have just become too complex. But guess what, Jax regained enough function to come off dialysis!
Since the beginning of this year we’ve been in and out of the hospital even more so than usual. Which is A LOT! Jaxson was hanging on to a bit a kidney function and even had a surgery on his hips, knees, and ankles so that he would be able to stand and walk with braces! AND HE DOES! He can walk with a walker now, not without lots of effort but he’s very proud and works hard! He has also grown an extremely impressive system of collateral vessels around all those clots in his main vessels!
He has since lost the bit of kidney function and we’re back to dialysis but guess what?! Mommy is a MATCH!
Mothers will know, fathers too, the need to take your child’s pain away. It’s in our DNA. I have watched my child go through extreme trauma and pain over and over and over again, never able to do much but sit there, pray silently, and hold his hand. He has fought time and time again to be here. I sat there each time telling him to fight, that I didn’t know how to face this world without him. But this time, this time I get to save him! They’e going to use my kidney. I get to physically take away my child’s pain. If ever there was a reason for my existence this is it. I am so happy to be a kidney donor for my Jax.”
Our announcement… Official news. #esrd #theamazingjaxson #transplantation #kidneyfam #crazykids
Posted by Grace Noel Fox on Thursday, May 17, 2018
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