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Destiny,
The NIH HiCy study used a different protocol and did not have the anti-fungal meds that are available today. The advice from your doctors is out of date and misleading. If you are interested, then you need to contact Hopkins directly to get the data on outcomes for all populations. There are different response rates depending on whether or not you've had ATG before doing HiCy. Having HiCy as the first line of treatment has a better response rate than if you had ATG first. BTW, NIH funded the High Dose Cytoxan clinical trial at Hopkins so they still thought it had merit even though their trail failed.
At the time when John went through HiCy in 2002, no one with SAA had died from the treatment.
I hope they find a donor for your daughter quickly.
Take care,
Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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