August 23, 2010

So... here is what's happened so far. On Tuesday, August 17th Alex had a really bad headache so she called the clinic to see what to do. They told her maybe it would be best if she went to the E.R. We went up to the E.R. where they did a CT scan and a MRI. They showed 3 different masses in her brain. The neurosurgeon came in and checked out the films and said that he was 99% certain that this was a reoccurrence of the leukemia and that it was not operable. They admitted her back into the cancer floor for more testing in the morning. On Wednesday they took Alex down for a bone marrow biopsy and also a spinal tap to draw some fluid out of there as well. Both sites came back with leukemia cells. This time the diagnosis is a little more challenging. With the abnormal cells contained in the bone marrow and the spinal/brain fluid they have called this condition CNS disease. On Thursday they took her into surgery to insert another port for all the chemo and medications that she will be getting throughout this process. This port is different... it's called a Broviac. It's a double lumen line that will always be outside her body. She was not happy with this port decision. But, one thing we found out was that it has to be this type of port for a bone marrow transplant (BMT). From what we have heard so far, this is what will happen "ideally" after these next heavy courses of chemo are over with and she has recovered enough for the transplant. Also on Thursday she received another lumbar puncture to administer the first round of chemo to her brain and also was started on many different I.V. chemos.

To say that she is devastated about this news would be an understatement. She has to defer her scholarship again and this time by a whole year. Our social worker up at the hospital is putting together a letter for Dan to take to her school and try to get this done.

She has also had an Echocardiogram done to get some preliminary pictures of her heart. It sounds like these next rounds of chemos are hard on the heart and also cumulative. She also needed a lung x-ray so they had some films to go by as well...

As of last night she seems to be coming out of the fog of ALL the anesthesia she has been getting since Wednesday.

I want to thank SO many people that have already called and/or emailed. I also wanted to say here to remind everyone that Alex is not allowed any flowers (although we appreciate the thought so very much!).

The best thing anyone can do in this situation is go to www.bethematch.org and register to become a Bone Marrow Donor. Alex has no full siblings and no matches within her immediate family. I am only a half match (which is obviously no good) and so is her dad. The more donors the better! We have met with the transplant team briefly and they say the younger the better, but I am not sure what they meant by that. I will get more information from them I am sure.

I will try to keep this blog as updated as possible. Thank you for caring and wanting to keep up with Alex's progress.