Everything that’s been going on the last few days really deserves a much longer blog entry, but I’m exhausted from my son’s latest school drama (he’s very unhappy at school…I think skipping a grade has been too hard on him emotionally),
so I just don’t have too much energy left to write tonight…
But the brief bullet points, of a pretty exciting week so far:
* very interesting conversation with my local immunologist Dr. K this afternoon. She said there’s someone at UCLA who is doing a lot natural killer cell work (I guess he advises to Update, which is some kind of big physician magazine), and she called him and he’s excited to meet me and my son.
Hopefully, he’ll still be excited after I walk through the door…my all too-healthy appearance often turns people off from realizing how sick I actually am.
* Then earlier today (Wednesday, Feb 1st), I went to this very interesting talk at Cedars on research on mice (and it’s applications to humans), and I got the name of a great immunologist at Stanford (Mark Davis) who I guess was just at Cedars, and then a panel woman was chatting with me afterwards in the hallway (I think she was curious because I was the only person in the meeting without a suit or lab coat),
and it turns out her mother in Austria is doing all of this great research in immunology. Another exciting lead.
* Then, coming up next week is my scheduled trip to the University of San Francisco, where I’m taking my son, David, to see a top pediatric immunologist up there…she’s written a lot of papers on disorders that David and I have had some strange semi-positives too (like Wiskott Alridch–diseases like that).
I’m just exhausted thinking about all of these meetings. Let alone prepping for them!
Because I’ve been feeling very bad the last few weeks, I’m actually having a hard time keeping up on all of these appointments…I need to come up with a better system. I lose track of what I need to do for whom sometimes, lol. They all need records…and paperwork…and a list of all of my diseases. I really should have been keeping track a long time ago!
The good news is, is even if one of these leads work out, it should be helpful.
IL-2? IL-6? IL-7??
I guess only time will tell : )
(Oh, and I’m waiting back for info from CHOP–hopefully, David and I will get out blood out there soon too–)