4 years…
The dreaded diagnosis anniversary. It’s been 4 years of endless trauma and pain. And laughter and joy. And so much love wrapped around every bit of it.
On July 1, 2020 our perfectly health second baby boy was born - bringing endless joy to our lives immediately.
On Jan 28th 2021, our entire world collapsed when we were told he had a mass at the bottom of his brain stem. So many surgeries would follow and they would remove the mass. We would be told 2 weeks later, that it was ARTR. A really, really, really fucking bad brain & spine cancer. With a very grim prognosis. We were advised to not treat him at hospital #1. He’s been treated at 8 children’s hospitals-spoil alert, they are NOT all created equal. Dr Prollo, Margol and Macewan are the reason he is here (he has had many other doctors who have failed Kai, simply put) . He’s had many surgeries, 70+ sedations, 5 shunt failures and revisions, terrifying infections, lost and re-gained the ability to eat, walk and talk on two occasions, MRIs with and without contrast, full brain and spine, every 2 months. Endless damaging chemotherapy drugs, 55 rounds of focal radiation to his brain (and counting), car-t immunotherapy trial. He started a cannabis regiment at 18 months old under the supervision of brilliant Dr Goldstein and thank goodness for her. We have moved many times and left our family for long periods of time to get life saving treatment. *thank goodness for your generosity over the years, we would never have survived financially without this help*
I, mom, would quit my 20 year marketing career to support our Kai in his fight. Chasen continues to work his ass off while managing unbelievable daily grief (he is my absolute hero, after Kai) Cruz has moved to many cities and schools and continues to thrive like the rock star big brother he is.
Kai is magic. If you have been with us during this journey, you know this. We were told in the beginning (after running away from the team who advised us not to treat him) that if we were the lucky ones, this would be a marathon. He’s had a less than 5% survival prognosis to about “0” since the beginning and after relapse. Due to his age and many limiting factors around treatment, we have been preparing to lose him for 4 years. Yet, he is magic. He just keeps getting knocked down and gets back up. He is the kindest and most loving child with endless sunshine to give.
In the natural way that it happens, I get a lot of “you are so strong”. “I’m not sure how you do it” and honestly, I’m not sure how I get through most days. I’d do anything for my kid, for my family. And so, here we are. The “lucky ones” in our community, because he has beaten the odds so far. The unlucky ones among those who are not in this hell, and gosh, I’m glad they aren’t.
I also wish people truly understood, because we would be surrounded and supported with life changing research if everyone experienced this pain. No way would people turn away and ignore.
I knew I’d fail the word count on IG, so thank you if you are here reading the longer version.
Thank you if you have been a part of holding our family up. I wish I could personally love on every one of you. I fail everyday, and will continue to fight, every day.
Sending one love - please hold your people so close