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

cherokeeThis 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 latent in the host; it is believed to cause hemorrhagic cystitis and nephritis in immunocompromised patients. (thefreedictionary.com)

His numbers for this virus keep climbing so he is now being treated with a drug ( hey! let’s throw a new drug in there!) Cidofovir.

His GvHd of his intestines is still really…real. Bloody bowels, too. It’s very frightening.  That in conjunction with the Bk and the skin is just awful. It’s very painful overall for him. He is tougher than Gina Davis in The Long Kiss Goodnight. Tougher than Samuel Jackson in Pulp Fiction. Tougher than Linda Hamilton in the Terminator.

His liver is holding steady. Fingers crossed. I do NOT want to have to order a liver. I  bet they are harder to get than bone marrow and doubt they have those on Amazon.

He groomed himself in preparation for Lily and Blaise to visit tomorrow. <That means he picked all the dead skin off his head.

I can’t wait to see my big kids tomorrow!

Gotta go cause having photopheresis and IVIG and who knows what will happen next…big day today.

Peace out, everyone.

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