My Plan…

Well, I’m on my way back to SoFlo from Texas and it was a great time. Unfortunately, I didn’t get a whole lot out of my visit with Dr. Younes however… He had one trial open (a JAK2 inhibitor called SB1518) that I would qualify for and so far only three people have tried it at MDA with only one person getting a response. I just can’t justify going to Houston for such a relatively unknown/unproven drug.

On a positive note, at least I had a chance to meet the legendary Dr. Anas Younes in person. If nothing else, I made a personal connection with him and got myself registered as a patient in MDA’s system just in case something opens up down the road. According to Dr. Younes, there are drugs in the pipeline that hopefully will be opening this year so I’ll definitely keep in touch. One nice thing is that he agreed with my course of action on trying the less toxic, novel new treatments for HL that are coming out and saving the heavier stuff for just in case I need it down the road.

As far as the rest of the trip to Texas, Jackie and I had a great time (once we left Houston). Austin is a blast and for anyone who’s never been there I highly recommend it (especially if you like live music).

So on tap, I fly to Detroit April 14th for another round of IVIG (which will hopefully help me turn the corner on the Guillain Barre Syndrome). I'm doing better with my hands but my legs are still lagging behind. From there I leave for NYC and it looks like I’ll be starting SAHA/Niacinamide at NYU on April 19th. I’m relieved and nervous at the same time. All I’m asking for is for some type of response as my back is getting pretty sore. If I can keep my disease stable or better yet get a partial or complete response (which is asking for a lot I know) I'd be really happy.

For now, I'm just going to enjoy the nice Florida sunshine and try not to think too much, ha!

Here's some shot's from Austin for S&G's :)


This is a beautiful place just outside downtown Austin called Barton Springs. The naturally spring fed water stays a constant 68 degrees and it's so crystal clear you can see down to the bottom.


This cat was getting crazy on the diving board


Getting ready to check out the bats of Austin. I'll explain below...


This swan showed up for the show too ;) He was working the crowd like he's been here before, ha!


There's a bridge downtown that is home to the largest concentration of "urban bats" in the world (or maybe the U.S. can't remember). Anywhere from 750,000 to 1.5 million bats come out every dusk to munch on 10,000 to 30,000 pounds of bugs every night!


They were swarming everywhere and as I walked close to the bridge, it stunk pretty bad. They sleep in the expansion joints under the bridge which is only an inch or two wide.


Shot of Jackie on Congress St. Lots of funky shops and some good restaurants. Last time it was 6th street and this time got to know Congress.


Can't remember the name of this Psychobilly two piece at the famous and legendary Continental Club on Congress


One of the many colorful performers of the Austin Streets!


Austin's unofficial motto!