Ketiacakes:
This is an incredible forum and everyone here has experienced the nightmare that you are going through right now. This too shall pass and we pray that you will be an inspiration for others who are newly diagnosed.
I really don't believe anyone here in this forum, nor in the medical community will have an answer for you. This is perhaps one of the most bitter/sweet aspects of having SAA . . . the medical community has come so far in treating it, but they still don't have solid answers on any of it. It's all about percentages and you will eventually become a statistic just like my daughter Kathryn.
Before you commit to any specific treatment option, you should exhaust all possibilities to ensure you are educated on your options. Let me throw some thoughts out at you.
A half matched (or haplo) transplant is not the ideal which I am sure you already know. A standard BMT requires hi-dose cyclophosphamide (chemotherapy) to wipe out your existing bone marrow, AND Total Body Irradiation (TBI) from radiation therapy to destroy your existing stem cells that produce bone marrow. Once your stem cells are eradicated by the radiation therapy, you are at the mercy of the new donor cells engrafting. Then the wait & see if any GVHD occurs. All of these combined are pretty tough on the body.
The MAJOR point is that your stem cells do NOT contain the code to attack your own bone marrow, the immune system does. So if you destroy the immune system with Cyclophosphamide, then you don't have to destroy the stem cells with radiation. Your own stem cells will eventually begin to rebuild your own bone marrow . . . avoiding any issues with GVHD, AND without going back to attacking your bone marrow.
This is why we chose Johns Hopkins for our daughter's treatments. They are one of the only hospitals in the world who are treating AA like a bone marrow transplant, but without new donor cells. We are VERY hopeful that the chemotherapy alone has not affected Kathryn's ability to have a family if/when she decides to have one. She is now 10 years old and back to living a completely normal little girl's life. The best thing about her treatments is that after she made it through her neutropenic phase, she was only on antibiotics for a short period of time. No other pharmaceuticals.
If you have any specific questions, please feel free to email
bchenaille@comcast.net
One of the only ways we got through this time was from the love of family & friends, and Looking up and asking for His peace.
May you find peace in the midst of your journey!