Vampires and Steroids
I’ve been wanting to post an update for two days but every time I sit down to write, I end up working on my book (which I think is a good thing). I’ve gotten about 60,000 words written which translates to about 185 pages. This is the most I’ve ever written at one time except for my other book (written in my twenties and currently collecting dust in a drawer somewhere).
This has been a good week for Ana. It’s her week of school, and she just presented her final science project yesterday. Her class was allowed to choose any topic they wanted about the human body and present it pretty much any way they wanted. So Ana chose to create a video about steroids (yes, that’s how much the side effects are on her mind).
Ana wrote the song, sang it and did all the artwork/photography for the video. Jim edited it for her. I showed this to Dr. Martinez and her response was “This is sadly amazing.” I’m not exactly sure what she means by that. Maybe the fact that Ana has to deal with steroids at all, and that as a smart, artistic kid she’s literally written a song about steroids which she presented to her class so now they can (hopefully) understand a bit of what she’s dealing with. I don’t think that’s sad though. I think it’s empowering and I’m incredibly proud of Ana.
Speaking of dealing with stuff, Ana had her blood drawn on Monday (as usual) right before school and it occurred to me how routine this procedure has become for her. I’ve been taking her to Benedictine hospital because it’s a lot easier and we’re (usually) in and out of there more quickly than driving all the way to New Paltz.
ANYWAY, every time Ana gets blood drawn, it requires her to confront her fear of needles, suppress the urge to run out of there, and deal with the pain of getting three to five vials of blood drawn. Every single damn time. This week was pretty easy – the phlebotomist got the vein on the first try and the blood..well…the blood flowed.
It takes a couple of minutes for the phlebotomist to get all the blood she needs. On this particular occasion, she chatted with Ana while she drew her blood (a happy vampire) and, much to my amazement, Ana chatted back. When she was done, about five of these were spread out on the table (all full to the top).
And then I took Ana to school, as I do every Monday. We even got there on time. I wonder how much of Ana’s blood is stored in labs somewhere. How much of it has been discarded? Where does it all go? When she was still in the hospital after her transplant, they drew so much blood on a daily basis that she literally needed a blood transfusion before they could discharge her. It’s all so neat, and clean and routine – but it’s still her blood flowing and flowing and flowing.
We got the lab results back on Tuesday and her enzymes are down again (sorry I waited this long to write that). Her AST was 18 (normal range is 0 to 44. It was 193 on 5/15 – the day before she was treated for rejection.) ALT was 47 (normal range is 0 to 28. It was 277 on 5/15) and GGT was 112 (normal range is 5-55. It was 169 on 5/15).
Dr. Martinez reduced her prednisone to 15 mg/day (down from 20) which she is now only taking in the morning. Hopefully this will help her sleep better. Thanks to Ana’s report on steroids, I learned an interesting fact. Apparently prednisone produces 4x the amount of cortisol per milligram than our bodies normally produce (we normally produce about 20 mg/day of cortisol but can produce a lot more than that depending on stress levels). So, 5 mg of Prednisone is roughly equivalent to the amount of cortisol our bodies normally produce – Ana is now taking 15 mg, which is roughly 3x the amount of cortisol than she would naturally produce. I actually don’t know much about cortisol levels – and what it means to have them constantly ratcheted up – something ELSE to research.
And, finally, I am happy to tell you all that the Ascione family is doing well. Little Paisley had her follow-up MRI this week and her skull is healing well (she had two fractures) and it does not look like there is permanent brain injury. She got a new cast for her leg which will hopefully be removed in a few weeks. She was ordered to take it easy for the next several months, and they’ll go back for a follow-up in two months. I am SO happy for them, though I know that there is still a lot of healing to do, both mentally and physically. Thanks to those of you who sent out thoughts and love for this family. I love our community!