He was never the same again….after this chemo round, after his transplant.
He just fought. and fought. and fought from there on out.
It started with just a little scuffle now and then, and ended in a war.
The scuffles so far….vomiting as a hobby, anaphalactic reaction to Ambisome, a bacteria now and then that would be knocked out by his antibiotics, and pain of some sort or another all the time.
Good Swings for him are that his Immunity numbers were building, the donor’s bone marrow was grafting(becoming truly part of Cory’s body).
Then Mid-August, a couple weeks in, I came to his room one evening (we had just begun cautiously swinging back into a routine—Mom took days, I took some evenings and stayed over on the weekends).
Cory is on the edge of his bed, holding his pole, pulls himself up to go the 3 feet to his bathroom. I jump in front of him to open the bathroom door for him, and to my shock, there are three urinals lining the wall (plastic containers to measure output)….filled with what looks like straight blood.
“What’s going on?? What’s wrong?”, I say as calmly as possible.
“It’s a virus”, he says. He dismisses me from the bathroom, pulling his many lengthy lines in the bathroom with him….and his Pole, and shuts the door. I am panic-stricken. I turn on my heel and exit his room, on a mission to find the nurse and an Answer.
Why didn’t they call me today to tell me??? …Oh, yeah, he’s 25. They told him.
90% of humans were exposed to it in childhood as a primary (first) infection in childhood. The virus usually “goes away” or becomes dormant and many never even felt sick. This virus can get into your blood and spread to other body organs, and it particularly likes to hang out in kidneys and bladders. It stays there, usually causing no harm or sickness because your immune system has your back and this is an easy virus for your Immune System Super-Heroes to keep under their capes.
But then…if there aren’t any Super-Heroes, that means No Capes…(and those silly Viruses laugh at antibiotics)…so these dormant viruses get a second chance at life in a patient with a compromised immune system.
This active virus caused Hemorrhagic Cystitis: Symptoms: Frank bright red blood in urine, pain and burning and high frequency and urgency, and clotting (yes, clotting.) For 2.5 months.
Bless his head-held-high, no big deal Self, saying “Thank-you” to everyone in the midst of the blood, the vomit, the pain…God bless him…please?
They talked like it was common, like it would pass, like this was a scuffle. But they talked matter-of-fact, really, all the time, so sometimes it was hard to read what we should really be worried about and what we shouldn’t. But containers full of what looked like straight blood concerned me.
So I Googled it. I don’t recommend that… I worried and asked questions and Googled more (bad, bad idea)….and I ended up Really, really, really Worried and Scared and couldn’t do one more or less thing about it than when I started Googling. So I kept the fear in my head and next to my heart and I Prayed.
And if it were possible, my future self would’ve whispered to me, “You ain’t seen nothing yet…”
I prayed and I smiled for Cory and we watched Dr. Who.
For 3 months: Google, pray, smile. Rinse, repeat.