Hey Destiny:
I continue to pray for your daughter's health. I can't imagine how you must feel having her endure this prolonged neutropenic state.
My daughter Kathryn went through the HyCy treatments. The one thing that I would really encourage is to reconsider your options. Everyone agrees that the most dangerous situation is prolonged neutropenia. The longer the wait to find a MUD donor, the more dangerous her situation.
As for the recommendation NOT to look into the Hopkins protocol using cyclophosphamide, I am a bit dismayed that the medical community still sticks to the merits of the NIH study which wrongly added cyclosporin. This clearly caused toxicity in the patients and the results were skewed. Dr. Brodsky just published the results from the Hopkins clinical trial and the figures are very exciting. You can read about it at:
http://bloodjournal.hematologylibrar...09-06-225375v1
What were the dangers for Kathryn? Yep, catching a virus, fungus, or other germ during her recovery phase. Did she make it? Yep, just like everyone else I know who has gone through this treatment. She is back to living a normal life once again. Praise God!
Unless I am missing something very important, here's the weighted scales:
1. Cytoxan @ Hopkins: 4 days of hi-dose chemo, antibiotics & GCSF. After a slightly longer neutropenic state, the body begins to regrow its own hematopoietic stem cells. No radiation, no GVHD, no steroids, no other drugs.
2. MUD BMT: 4 days of hi-dose chemo, full body radiation, foreign marrow, GVHD, steroids, et all.
With all the possible side effects of the MUD BMT, it may be worth exploring this route that could be started now and get her body recovering sooner rather than later. Nothing is foolproof with this dreaded autoimmune disease. But having gone through it, I am so incredibly thankful that others who had blazed the Cytoxan trail had encouraged me and our family.
Baltimore is also home to the Ravens. They come to the local Ronald McDonald House to give out signed footballs to the kids. If for no other reason, maybe you would choose Hopkins to get her a football? :-) (I know . . . dumb joke, sorry!)
bchenaille@comcast.net