I have been living in terror since 9/13/10, when I took my 15 yo daughter to the doctor for severe abdominal pain and unrelenting headache. After taking her blood, they came back to take blood from the other arm (did they really think it was going to be any different
)
We learned her platelet count was 7, and she was hospitalized immediately. The abdominal pain, incidentally, was totally unrelated - an ovarian cyst. Other than petechiae and bruising that we had been totally unconcerned about, she was asymptomatic. After bone marrow biopsy, we got the SAA diagnosis.
Her brother was not a match for transplant, insurance company drug feet about approving treatment (as if I weren't crazed enough), but finally got ATG underway 10/13/10. Seven days in hospital.
For the first few months, her platelet count hung out around 1 to 3 while we lived in a twilight zone of medication, transfusions, and allergic reactions. The first improvement in her platelet count not related to a transfusion came about 8 weeks in, on 12/7/10 (last transfusion on 11/11). For the next several weeks the platelet counts improved steadily to the mid 60's, other counts crept toward the normal range. I dared to hope.
Platelet count has been stalled out in mid 60's for 6 weeks now. As of yesterday's test, actually dropped by a thousand. Two weeks ago, all but 2 of her other counts had reached normal range; as of yesterday, all were back to abnormal.
Emotionally, I'm back at September 15, 2010. Does this interruption in the improvement mean she's likely headed for complete relapse? Or is there still hope for improvement from the initial ATG course? She is still on cyclosporine, not scheduled to consider a taper until April.