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!
If anyone has questions about joining the bone marrow registry or how bone marrow donation works, feel free to send them my way! I organized a bone marrow drive at Oxy my senior year, so I learned a lot about how the whole process works. Often times (depending on the patient, their diagnosis, and the physician's preference) donating your bone marrow is no more invasive than donating blood.
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