This is how we do it

Hopefully most of the people reading this (especially Annie's classmates) have never seen what a blood transfusion looks like, so here it is.  The pole to the right has a bag of packed red blood cells hanging at the top.  These go through a pump that determines the drip rate (Annie likes a slow drip or it gets uncomfortable).  You can just see the tube carrying the blood against the pillow on her lap.  This connects to a needle sticking out of her arm.  I know that part doesn't sound so nice but it doesn't bother her.  The pillow on her arm actually contains a warm pack that helps the blood flow more smoothly.  Today she only received one bag of blood so it took three hours for the transfusion part.  Although this seems unbelievable, we calculated that Annie has had over fifty transfusions and around 300 needle pokes so far.

For me, going through the third treatment round in six years feels like when you read the same book at different points in your life.  While the plot remains the same, your experience with the book changes as you've changed.  First it's a lot easier as I have already worked through so many layers of the experience and both girls are much more independent.  For example, Annie can now read and write and stay by herself without getting scared.  In fact she asks me to leave the room so I can get her a treat from the cafe and she can sneak in a video.

The preliminary bone marrow registry search turned up 159 potential matches at the six-out-of-six level.  However we know from earlier searches that it is unlikely any of these will be a perfect match as she has one very rare allele.  Nonetheless they want to retype her blood since they now match for twelve alleles.  This blood was collected today.  I have been asked how to get involved with the marrow registry.  The website is http://marrow.org and they'll send you a kit where you swab the inside of your cheek and mail it back.

In the meantime the plan is to increase her immunosuppressive medication dose in hopes that she can avoid more transfusions.  She has only received whole blood transfusions as the body develops an immunity to platelet transfusions so the doctor only wants her to have one if she is actively bleeding.  Thus, I warned Annie, she is like a walking bull in a walking china shop.  Her body is very fragile yet she's all jacked up on blood (good thing vampires are still cool).

She is scheduled for a bone marrow biopsy next Friday and no news is good news until then.  Thanks for the continued prayers and support!

Fuel gauge

Unlike cars, unfortunately, we don't have little fuel gauges on our t-shirts so we didn't realize Annie was going to run out of gas at school this morning.  (Special thanks to our miracle-working neighbor!) Although her blood levels are checked weekly, it is best for her to have as few transfusions as possible so it's always a guess as to if she can make it another week.  She's hanging out on the couch taking it easy now and all is ready at the hospital to refuel her tomorrow.  So as not to paint the wrong picture of her status, let it be known she is looking forward to playing guitar and singing in two numbers and doing a tap routine in a third at the school talent show on Friday.  I'm not kidding when I say this is like a roller-coaster, she can go from 0 to 100 in a matter of hours! 

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!