The Move and Initial Testing

Last week and the beginning of this week was a milestone for us. We finally got me back to Kansas City to start the bone marrow transplant process! Getting to Kansas City had its up and downs. It's really difficult to organize and pack and move with a 3 month old, so not a lot got done and most of the packing was done at the last minute. Our friends, Schel and Sterling, threw us an awesome going away party! We had a lot of fun and I'm so glad that so many people showed up. It really meant a lot to me to see how many wonderful people we have met since moving to Hawaii. I'm really going to miss everyone!

I got 2 transfusions last week, one on Monday and one on Friday. Both platelet transfusions. My platelet count on Monday was 8 and it was 20 on Thursday. My hemoglobin was 8.7 on Thursday, so they didn't think that I would need RBCs for the trip home. I kind of wished that I had gotten some RBCs on Friday as well for the trip, because traveling is exhausting enough, let alone doing it with low oxygen. Oh well, I made it and that is all that matters.

Wednesday was my consultation with the BMT team at KU. Things are definitely different here. They won't let Kellan come with me...ever. Everyone wears gowns and gloves when they do anything to me so I feel like I'm the diseased one, only they are just trying to protect me from their germs.  Its almost like a factory, but everyone was really nice. The doctor didn't have great bedside manner, but he seemed really knowledgeable and eager to get started. There was a lot of information given to me and of course all I remember is the bad stuff. 5-6 days of chemo, I can't be around Kellan at all for 2-3 weeks if I am lucky, after I get home...no pets, separate bathrooms, no plants, no Kellan after vaccinations. I was also told that trying to continue my milk supply going through this is not feasible. For something that I thought I wanted so badly, now turns into something that I am dreading. I thought the worst would be over in a month, but it looks like it will be more like 4-6 months and some things will be in effect for up to a year after the transplant. I am really
upset at the fact I am not going to get to be around Kellan.

This will in fact be the hardest thing I will ever do in my life.

They drew my blood to repeat all the tests TAMC did. I'd say it was easily 20 tubes of blood. I got my CBC back and needed a platelet transfusion yesterday, my count was 11. The good news is that I DON'T have to be admitted to the hospital for this! That cuts my time down by 3 hours! The doctor commented on my WBC and he wondered why it was so high. I told him about my WBC stimulating shot and he said that doesn't work for people with AA. Of course that made me want to go and do some more research...what I found was there isn't any concrete evidence that it does or does not work. If I don't have AA, they will know when they get my new bone marrow biopsy results back.

I also got some preliminary results back.  My liver functions tests were elevated, so was all of my iron tests and my B-12 test.  The only thing they can tell me that is causing this is the breakdown of my red blood cells and all of the transfusions I have gotten.  I hope it is nothing more serious, but for now they are going to do an abdominal ultrasound to check.  After all the tests next week, we will know every little thing that is wrong with me!