Small wins..
Ok, maybe a couple of ‘big’ wins also. But when you are talking about cancer, nothing feels like a win, really.
But, after we were told that they removed the entire tumor from our son’s brain stem and after days of watching him intently with dozens of doctors analyzing his every move, and seeing him slowly come back to himself, we took a sigh of relief. Then, we got scary news. Then he went into another surgery and another…and another.
After a while, we worried about being optimistic because it felt like when we were, something even more terrifying was thrown our way.
After weeks like this, he had his LP. This test, which took spinal fluid and tested it for active cells-which we would receive the results many days later, and we were told that these results would put Kai in either a category of 10% or 50% chance of survival. I hate these words. I HATE these words.
A good friend reminds us regularly to not listen to the percentages. That kids surprise us all the time. I hear that I embody that, I choose to hold on to that. Also, as a worried mom, it’s terrifying. It all is.
We got the results. They were negative. We took a huge sigh and then we looked at each other and we connected without words to that place of hesitation, all in the same moment.
Regardless, his tumor is out of his precious head. His cerebellum fluid tested negative last week. His MRI on this spine showed no signs of activity, his kidneys look clear and functioning well, and his LP was negative. All small wins. All good signs (for now).
They call this M0 (that’s Mzero) it means we start chemo and we hope we can keep it at bay for as long as possible with nasty meds being pumped into his sweet body. We hope that these meds don’t do major damage, which they might.
Once Kai turns 1, he will be eligible for radiation, if needed. He has just passed his 7.5 month birthday.
We fly to Memphis (Kai and I) on Sunday. We start treatment on Monday. We start fighting this asshole disease on Monday.
We continue to be floored by the generosity of our friends, family, and perfect strangers who are showering us with love.
My to-do list before Sunday is longer than I’d like and I’m tired. I’ve never been more tired. Physically, emotionally, mentally…but it’s all for him. I’ll fight until I have nothing left, for him.
I’ll keep fighting for Kai because he is our world and he will be the one actually carrying this heavy load. I’ll just be there holding him, crying with him, and helping to protect him in all the ways I can. I wish I could take it all from him. Gosh, I wish I could.
with love, xx