[NLJabbari]

Thanks Curlygirl! If you don't mind me asking, how old is your son and what was his initial dx'es? Also, where is he being treated?

You're absolutely right in that it is very confusing. We switched Drs in-between the time he relapsed and the 20% PNH clone dx'es via Flow Cytometery blood test. I could have sworn the first Dr. said the BMB pathology report found no evidence of Cytogentic abnormalities? I have to go back and reread this report. To the best of my knowledge, this 20% clone has thankfully not evolved in the last year. I too will have to ask my son's Dr. about this and I will bring it up at the upcoming AAMDS Conference in San Francisco/Santa Clara.

Yes, BMT is a scary thing, but like you said-- they have gotten better and we're hearing a lot of success stories. As it is right now, my son is leaning towards transplant should they find a good willing donor for him.

Thank you so much for your input, it's greatly appreciated.

Please let me know how your son is doing and I pray his Insurance issues will clear up really soon and he can proceed with treatment.