Everyone! My niece, Alexa, is doing BETTER! It is a bloody miracle!! From my sister's blog on Alexa:
I want to talk a little more about the scan results. The bones being clear is amazing. The last time we did this kind of a scan was in July and at that time she had disease in both her hips, knees, right femur, right arm, ribs, skull and eye bones. To have that all gone is astounding. Her tumor in the chest shrinking is also crazy. The last time we saw anything shrink was after the very first round of chemo 2 years ago and that was minimal at best. Nothing has worked well on her in 2 years and now we finally have found this wonder drug that is working for her.
The even more unbelievable thing is that this drug in the past has not shown to help regress the disease at all. At best it has kept things stable. The way ABT-751 works at a molecular level is to keep tumors at bay, not regress them. So the fact that it is doing so in Alexa is awesome. She has always written her own ticket.I want to emphasize that we are by no means in the clear as far as the NB goes. She is not close to being NED (no evidence of disease) and in all likelihood will never get there. BUT this buys us time and time is the most precious gift of all.
We will really get a better reading with the bone marrow biopsy and then the MIBG in early December after a couple more rounds of medicine. The MIBG is the best tool for finding disease in NB kids.
This morning I opened my email to behold three new editions of "The Lefsetz Letter." The "Letter" is essentially one man seasoned in the music industry pontificating on industry issues - sometimes just musing, sometimes just bitching, sometimes just business commentary. (If you're at all part of the music/production industry or aspire to be, you should read it. It's great and timely. http://lefsetz.com/)
Funny how your favorites are not those on the radio. The bands on the radio are for everybody. You can get their material in one listen. It's for those not paying attention, those who don't NEED the music. Whereas the records we hold near and dear speak to us, reveal themselves over time. We would no sooner part with them than disown one of our children. We need them. We grow old with them. They might not change, but we get new insight every time we listen to them.
least favorite song on the album. It was for everybody. It was for those who don't NEED the music. But how about "Animal"? BEST BREAK-UP SONG EVER. And "Dissident"? "Rearviewmirror"? YES, PLEASE. And I know that "Leash" is the naughty song at the end, but hell if its not the best freaking song to rock out. IT WAS THEIR IDEA! I PROVED TO BE A MAN! And the quintessential teenage depressive anthem: "Indifference." (Imagine me with my Walkman, then later, Discman, then later Car, then later iPod - writhing around letting out all bottled emotions! Excellent!)I will light the match this morning so I won't be alone
Watch as she lies silent, for soon light will be gone
I will stand arms outstretched, pretend I'm free to roam
I will make my way through one more day in Hell...
How much difference does it make
I will hold the candle till it burns up my arm
I'll keep taking punches until their will grows tired
I will stare the sun down until my eyes go blind
I won't change direction, and I won't change my mind
How much difference does it make
I'll swallow poison, until I grow immune
I will scream my lungs out till it fills this room
How much difference
I have established "Rock n Roll Fridays" at my workplace. Only a few folks participate, but it seems everyone knows about it and looks for whatever shirt I am wearing that day.
Natalie (who I didn't realize I missed so much until this weekend!) had this site as her Gmail tag/status:
As someone who is clumsy and embarrassing (but not really unprincipled or mean spirited, points for me!), these are comforting words:
My dearest Juan visited me in Boston this weekend. It was most excellent! I love him so much and I miss him already. We went to Santarpio's, the diner in Watertown, Mr. Crepe, watched General Conference, found some rockin' new clothes at H&M, etc. I heart him. You know who else I heart? My roommates (featuring Juan's photography and our living room):
Rachel wants to die. Stop. She has a fever. Stop. Sylar is keeping her in her chair. Stop. Trying to blog from my phone. Stop.
This dapper young gentleman requested a blog post - one with pictures or just an update of my life. I am glad somebody still checks on ol' Infamous Dance - I was worried it was collecting cob webs (get it? cob WEBS?! HAHAHAHAHA) from weeks of neglect.
