For the last 3 years we have often been asked about the vaccine study that Sydney was on at Texas Children's. You may remember that I let on that one of the reasons that we were so interested in it was the fact that there had been some pretty significant responses. Better yet, a few of these responses were seen right before Sydney was scheduled to have the vaccine. While we may never know what effect this may or may not have had on Sydney (she had no detectable disease) we knew of many who had significant results. Over the years this trial has been tweaked several different times and has even received a new principal investigator. In fact, one of the major components (and scariest) of Sydney's experience, the lymphodepletion, is no longer part of the protocol. They have reduced doses, increased doses, and just about everything in between honing the treatment as they have gone along. I am happy to say that the trial is still an option for many kids and finally I have some information to share. At the CNCF's neuroblastoma conference this year, Dr. Chrystal Lewis presented information (and results) on many of the patients in two of the vaccine trials that they offer at Texas Children's. I have finally received the video and posted it on the CNCF website. Information on both the Nestle (Sydney's) vaccine and the Cheesit (CHESAT) vaccine trials are covered. They can be found here:
http://www.nbhope.org/blogs/neuroblastoma_conference_videos_2007/archive/2008/10/09/cncf-2008-cell-and-vaccine-therapies-for-neuroblastoma-at-texas-children-s-hospital.aspx
Go ahead! View it. It is interesting stuff.
Finally, I also want to remind everyone of the concert tonight at the Ridglea Theater in Fort Worth starting at 7:00 PM. Ticket proceeds will benefit the Children's Neuroblastoma Cancer Foundation. Come out and have a great time. And, yes, I will be out past my bed time.
I have my purpose to keep me awake.
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1 comment:
Wow...very surreal regarding the video. I don't need a name on a slide to know our daughter was Patient #8. Although in the end we did not have the outcome we wanted, it is nice to know that there is still hope for a trial she contributed to and it is still being researched and used today. Thanks for sharing that.
Charon Edgington
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