Nathan
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Tues. - Nathan went to OMO today. Counts looked great again. Platelets were 73 - yeah! Slow and steady. God bless you all.

Nathan's diagnosis is Neuroblastoma (abdomen, stage IV).

"Does He who formed the eye not see? Does He who implanted the ear not hear?"

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  MONDAY, JULY 21, 2008 08:17 AM, EDT
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Hello again. I (Brad) am back from the conference and it was superb. There were many dozens of families there who have been affected by neuroblastoma (NB). The accommodations were very nice, food was top notch, the agenda was very well planned and run, and the speakers were the top NB doctors and researchers from around the country. The program was all presentations and panels discussions, both with Q & A time. And there were some very direct questions. Many of the speakers introduced new research and new phase I trials for which they are recruiting. For a parent with a child with NB, who was looking for information to make treatment related decisions and to better understand the enemy, the conference was most excellent.

I tried to talk to as many different families as I could to hear about their child’s disease characteristics, their prior treatment paths, their doctors/hospitals, the new treatments they have tried or looked into, etc. There were a lot of people there with children who have relapsed and their were a lot of angel parents there. The angel parents had concurrent but separate sessions from us most of the time, but these parents were very helpful (in personal discussions by giving you a perspective on phase I trials, vaccines, “the newest thing”, etc.) and were flat getting something done about NB through fundraising, raising awareness, etc.

The doctors there were the absolute tops in the field in this country. There is no way I could even start listing their contributions here: Dr. Cheung, Dr. Sue Cohn, Dr. Patrick Reynolds, Dr. Heidi Russell, and probably ten others. We heard a presentation on a new antibody therapy being introduced by St. Jude’s in Memphis, a new antibody therapy being introduced by Baylor Children’s Cancer center, some early results of some MIBG therapy being offered in multiple places, quite a few new drugs that are being investigated against NB, quite a few new areas of research into NB, etc. We heard from Memorial Sloan Kettering, St. Jude, City of Hope in CA, Children’s Hospital of Los Angelas, Baylor, Children’s Hospital of Philadelphia (indirectly), etc.

I will tell you the cure has not shown up yet. The presentation on MIBG therapy showed some images that showed AMAZING decimation of NB in a child, only to have the NB recur just like it can do with every other treatment out there. It was kind of discouraging. But what was encouraging was the effort that is being done by some very smart people to drill down into the science of it all looking for the cure. It was very moving. People who could not present very well probably said more than anybody else to me because you knew their home was at the microscope and in the data. I appreciated that more than I can say.

· More to follow later on the most promising treatments and research effort that we learned about. Most definitely Reach the Day.

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EMAIL AUTHOR
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HOSPITAL INFORMATION
Kosair Children’s Hospital
234 E. Gray Street
Suite 450
Louisville, KY 40202
United States
502.629.8060
 
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