We just met with oncology. We're in for the fight of our lives. It's a very aggressive and very malignant tumor called an AT/RT. Logan is in for 5 months of intensive chemotherapy followed by a marrow transplant of his own stem cells. The prognosis is 40/60 to 50/50. I have to keep reminding myself that 50/50 isn't 10/90 or 20/80 or 30/70. Or 0/100. There IS still hope that we'll get to see him grow up, go to kindergarten, get married and have children of his own some day. 50/50 means half of all children survive and go on to live normal lives. There's NO reason why Logan shouldn't wind up on the upside of those statistics, even if it seems that every time we've gotten news lately, it's been bad.
If I said that I understood why this was happening or that I even think it's okay, I'd be lying the biggest lie of my life. I'm crushed, mangled, devastated, and my spirit feels like it's dying. Although I'm furious with God, where else can I turn right now to cope? I have to trust that He will see fit to heal our little sunshine here on Earth, even if my own since of hope is all but dead. I can't imagine life without his smile, his silly dances, his proclamations that everything is beautiful and his sweet, tender spirit. The world is a better place just because he's a part of it.
I have so many deeply painful regrets right now. I regret every time I yelled at Logan. I regret not letting him have a cookie at the mall a few weeks ago because he'd pitched a fit over me refusing to buy him a pair of Lightning McQueen pajamas. I regret that for the first time ever with any of our kids, I didn't take his 4-year birthday pictures on his birthday because he had a scratch that kept opening and bleeding in the corner of his mouth. We still haven't taken them yet. It's so painful to think about having to let him go that I can hardly breathe, but I continue to acknowledge that there's nothing I can do to fix him. I want to scream and kick and demand that God fix him NOW.
For now, the plan is that he'll come home with us probably tomorrow, and then come back to Children's to begin chemo on Tuesday.
Please, please, please get the word out. Get the prayer flowing in a way that would blow even God's mind.
I am so sorry about your loss. My nephew passed a few weeks ago after a 15 day battle with ATRT. My heart is with you and your family...
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