Some comments have indicated they don’t want this blog to be about me. And the people who comment seem angry. That’s ok. Everyone has a different experience with this disease with a different child. I certainly do not mean to offend. This is meant to tell about what happened here.
It is meant to remind me what day it is, sometimes. It was originally meant to update relatives and turned in to a sort of therapy for me.
I have said this before, but I will say it again. I try not to put too many gory details about Ashton here ( I save them for phone conversations with immediate family) because my two older kids have access to this blog. But, if you want details, and I’m not sure why you really want all the horrible behind-the-scenes stuff about him and what he, in particular goes through on a daily basis, I suppose I can do that for you. You, anonymous folks out there.
Ashton has High Risk Refractory Acute myeloid leukemia (AML), also known as acute myelogenous leukemia or acute nonlymphocytic leukemia (ANLL), is a cancer of the myeloid line of blood cells, characterized by the rapid growth of abnormal white blood cells that accumulate in the bone marrow and interfere with the production of normal blood cells< Wikipedia says it way better than I do. Right now he is vomiting blood and shitting on the floor so I will be right back.
Ok. So. That happens a lot. As we wait for engraftment rather than graft versus host disease as he is 11 days out from transplant. He continues to get sicker and sicker. Super high fevers round the clock which range from 102 t0 104 or 105. Severe leg pain. Constant vomiting or dry-heaving, about every half hour. He has not seen the sun in two months. He sleeps in a dark room with one window facing a wall about 23hours a day.
The reason you don’t get the gift of seeing photos of Ashton “interacting” with family and playing is because he doesn’t do THAT. We don’t take photos of a child who we can barely see in the dark.
He also doesn’t eat or drink.
He is also threatened by an unknown bacteria and has a urinary tract infection. He has to wear a diaper and he’s almost six.
Does this satisfy your curiosity? No. You can’t have photos. If you were a friend of mine you would see photos from a month ago on facebook when he was feeling a little more photogenic. Whoever, you are, you have clearly never been in Cincy Children’s BMT and you have certainly never been in this room. Or any other room on this floor.
P.s. If this ever turned in to a book, ever, it would be self published and handed directly to my son.
I’m gonna go catch some barf.