just got back from new york a few hours ago. it is easy to say that this was probably the smartest decision we could have made. we met with dr. leonard wexler at Memorial Sloan Kettering Cancer Center in Manhattan. we unfortunately walked in with a bad impression of him, given by the head of cureASPS.org, who said his number one priority would be reasearch with little regard for my well being.

we were pleasantly surprised to find that he was the answer to all our prayers. he has the distinguished privilege of being a part of what is probably the number sarcoma treatment center in the country. therefore, unlike the doctors i've been seeing here, he is greatly in tune with the latest treatments and information. aside from that, he exuded the quality that i felt was so utterly lacking in anyone else i've talked to: he gives a shit. simple as that. the amount of preparation done in anticipation of our arrival was impressive to say the least. it seemed like a tidal wave of the most valuable information we could hear that had seemed to be avoiding us this entire time. seeing as my particular cancer is mainly prevalent in children, he deals mostly with very young patients. his compassion and caring overflows from his tiny consultation room, with toys scattered about and the walls plastered with pictures of children (i assume) he has treated. one thing in particular caught my eye: next to the door was a picture of ernie from sesame street torn out from a coloring book. written neatly across the top in red crayon was "to: dr. lenny."

in his no frills method of approach, he proceeded to tell us that most of what we have been told is slightly incorrect to totally wrong. the prognosis of 5-6 years that i had been given was described as "wildly optimistic", and that the treatment plan laid out by my oncologist in st. louis would be of no help except to make me sick as a dog and just as miserable. he instead told us of a new clinical trial being performed at Sloan Kettering and also MD Anderson in houston. the trial is for a new drug which shows great promise in treating exactly what i have: metastasized masses from alveolar soft part sarcoma. there was a seminar in london less than a month ago, in which the results of a first clinical trial were presented. 7 patients with various metastasis were given the new drug. ALL showed vast improvement, such as significant shrinkage or growth stoppage. the pictures of the before and after CAT scans were more than enough to convince us that this was the right course. my mom was prepared to sign me up and leave me right then and there.

i should begin the trial sometime next month. initially, i may have to be in new york for up to a month straight. then, depending on the results and how i react to the drug, it may be reduced to just one visit a month. thankfully my dad's airline benefits and my entire family being in brooklyn/queens/staten island will make all of this incredibly easier.

after so much bad news, bad info, and just plain bullshit, this was a refreshing breath of hope. finally something we can feel confident in, with significant evidence and research to back it up. finally we met someone who can help who's passion to see me live seems to be on par with mine. the days keep getting better and better.