Baby Steps

L and B came Saturday night and we had such a nice dinner out in Hyde Park with Brian. I took them to the only restaurant I could think of: The Cock and Bull. So, naturally Blaise had to make comments about penises. (Penis’?) (Peni?) oh, nevermind. We all shared the BMT Suite and some … [Read more…]

*sigh* (I don’t know what else to call this)

This is a Cherokee symbol for strength and perseverance.   Ashton has had the BK virus for several weeks now. Liken it to a  really bad UTI. Hemorrhagic cystitis (literally peeing blood) It hurts. It is a common complication following high-dose chemotherapy and bone marrow transplantation. BK virus:  (BKV)  causes widespread infection in childhood and remains … [Read more…]

Ketamine Makeover

I don’t know how to say this. Wound care, not I! They buy 39 minutes with a knock out to re-dress him head to toe,including total sterilization. Four people plus me. Mummified Ash. Appropriate ointments on appropriate body parts, assessing and oohing and awing over this and that, peeling dead skin, glorifying new skin, wrapping … [Read more…]

Ohm.

Reiki uses healing energy made up of life force energy that is guided by  spiritually guided life force energy.  Reiki energy seems to have an intelligence of its own, flowing where it is needed in the client and creating  healing conditions. Apparently, it cannot be misused as it always creates a healing effect. Both Ashton and … [Read more…]

Field Trip

Too bad Ashton didn’t know he went anywhere. During rounds on Monday, we were sent “home” to BMT. I was assured he would have adequate care in his delicate condition. Epic fail. To the credit of our awesome doctors, he was holding his own on a respiratory level. He really did seem stable (ish). Everything … [Read more…]

The Good(ish)Witch of Cincy

Depends on who you ask. I am so happy the nurses have a sick sense of humor, too. The docs play serious, but I KNOW they laugh, too. I have stopped even trying to keep a very serious-I know-what-you-are talking-about-look on my face anymore during rounds. Yesterday, I had to ask if it was Saturday. … [Read more…]

PICK YOU

I PICK YOU for PICU, said the Universe about my son. We moved here yesterday. We lost our sunny room in BMT. Due to graphic issues because too disturbing I won’t write about  and respiratory distress, we are in a whole new world without Teenage Mutant Ninja Turtle Posters. Don’t fret, Bunny is here. Ashton wouldn’t know … [Read more…]

Mommy?

Yes, Ash? Will you come over here and cover me with hugs and kisses? I thought, perhaps, I had entered the wrong room after fetching ice early this morning. Anyone who has had the privilege of even an hour of this journey with Ashton knows those words have never been uttered. He is more apt to … [Read more…]

GvHD, And The Reality of It

I’m so lost, I don’t even know what I wrote about last so forgive me for any repeats in advance. In exchange, I will try to punctuate. A slew of tests day before yesterday knocked our boy on his ass. He usually comes out of sedation like The Four Horseman from the Apocalypse wrapped up … [Read more…]