Here we go again!

Greetings faithful friends!  It has been over six years since Annie was diagnosed with aplastic anemia in preschool and we started keeping everyone updated on our roller-coaster ride.  I can't say we have gotten off the ride, it's just we've been on a kind of long, flat section.  However our little cart is picking up speed again hence we're firing up the blog.

To recap...Annie was diagnosed with aplastic anemia in November, 2005 when she developed an unusual number of large black-and-blues.  She began almost weekly blood or platelet transfusions as well as large numbers of blood draws and medical procedures.  In February, 2006 she had a bone marrow transplant with her own stem cells saved from the chord blood at her birth.  The transplant was a success and she began kindergarten.  One year and a half later her blood counts dropped again and she needed treatment.  In August, 2007 she had the immunosuppressive therapy called ATG.  She has been on immunosuppressive medicine ever since but with a relatively low response.

Since that time we learned that our home had been improperly treated with a pesticide called chlordane decades ago yet the levels were still unsafely high and her body was contaminated with the substance.  Chronic exposure to chlordane can cause aplastic anemia and since Annie has tested negative for every genetic form it's our best guess as the cause. We moved her out, cleaned up the house and bought a new house but the condition remains.

We moved her care to another hospital and tapered her off her immunosuppressive medicine to see how she would respond.  Her blood counts dropped again and we are now deciding what treatment path to follow from here.  There will be a search of the bone marrow registry to see if she now has a perfect match (she did not in 2009) and she will have a bone marrow biopsy to check for any unknown developments.  In the mean time she has weekly blood tests and transfusions as needed.  She has been able to stay in school and is a happy fifth grader who enjoys school, friends and performing in musical theater.  Her next blood test/transfusion date is this Thursday and I'll update after that.

Many thanks for all the support and prayers!