I can't even begin to describe how we're feeling right now.
After talking with the new Dr., researching on my own online, and speaking on the phone with a highly respected Dr. that has much more experience with aplastic anemia, we now know that a majority of what took place this year should never have happened, which is very hard to accept.
First, the GOOD news
- Angel no longer has SEVERE aplastic anemia. She does still have aplastic anemia, and will until she reaches 100,000 on platelets (currently 57000) and is consistently over 1000 for ANC. That may or may not ever happen. We are still working out exactly what this means as far as the precautions that still need to be taken to keep her safe. This does not change the fact that she still needs to have a bone marrow donor match. Relapses do occur.
The bad news: We have been getting inaccurate information from the time of diagnosis, and her Dr's lack of understanding of aplastic anemia has caused Angel (and our family) to endure so much more than she ever should have.
Angel actually met the criteria of no longer being SEVERE in MAY, yet we were continuously told at clinic visits through the end of Aug. that the treatment was not successful. We went from that, to suddenly being told last month that she was "cured" - neither of which is accurate.
As to everything that happened that never should have, there were many, but here are some of the major ones.
Angel's life was put on hold and she was basically homebound. She was almost always on dietary restrictions, and couldn't care for her gerbils. NONE of that was necessary once she was no longer severe. She could have been outside, and even gone to camp. Her central line should have been removed, and she could have gone swimming. There were a few things she still wouldn't have been able to do (and still can't), but life would have been much easier.
The biggest thing is that we did not have to move. Yes, we needed temporary housing for a few months, but then we could have moved back home. Angel had to give up so many of her belongings to move here, which was extremely hard on her. We now have a mortgage, put a lot of money into the new house, and still have the old house to deal with and the costs from it, not to mention the stress that is still overwhelming. Most importantly, we are simply not happy at the new house.
All of this was very hard to deal with when we thought it was all because of her condition. Finding out that all of this happened because Drs. gave us incorrect information, has us reeling. It wasn't that we misunderstood - we asked extensive questions, especially concerning having to move from our home.