Friday, January 30, 2009

I am soooooooooo

Dr. Al. came in a little after 4 and after talking with him he said we could go home and it was a whirlwind from there. I totally forgot about updating for all you out there in blogger world. Hopefully your refresh button isn't too worn.
Anyway, this post is from Macomb! We were discharged about 5:30.
I don't even know how to explain what Dr. Al had to say, but I'll do my best. Apparently we are back to where we were in May. From what he could see from the aspiration, she has evolving AML or pre-leukemia. So what does that mean? We will wait for a confirmation on how "evolved" the cancer is from the actual bone marrow biopsy which should be back by mid- to late next week. We go to St. Jude on Tuesday and check her counts. She will get transfusions as needed over the next couple of weeks.
Our options are:
1. Treat the pre-leukemia by transfusing whenever necessary and wait to see if it "disappears" again.
2. Start chemo treatments.
Once we have all of our information from the biopsy, we will sit down as a team and discuss what is best for Olivia. And, yes, this is very frustrating. I thought a person either had cancer or they didn't. Or if you had cancer, it didn't just go away. So, we have lots of research to do and lots of praying to do before Tuesday. If we start to understand any of this, we'll be sure to let you know. Until then, feel free to join in our confusion!


Anonymous said...

Well, okay. Good? I guess? What a confusing answer after a long days wait. I know I have lots of questions, I can't imagine what your list looks like.

As always, if you need a place for a kid or two, let me know.

Sharp Family said...

I can't even imagine being in your shoes!! We'll be praying for guidance for her entire "team" of specialists. And yes, I am as confused as you are. Definitely hard to go through all of that and still not really know the answers. We'll continue to keep you in our prayers. Stay strong!!

Judy said...

Okay, so it's not the best news, but it's not the worst either! Sounds to me like God just needs to do exactly what he did last May and make this cancer disappear again! I'll ask him to do that ASAP, but sometimes he has his own timetable! And I can only imagine how frustrating that must be! I'll really be praying for you and Zak as you face lots of decisions in the next few weeks! And of course we are thinking about Olivia, praying for her and loving her through every minute of this!

Anonymous said...

sending prayers your way. Let me know if I can do anything for you guys.

Bethany, PICU

Sweet Angel said...

Here I (the mom of an angel with down's syndrome) sit in the great Hotel PCMC (Primary Children's Medical Center)as my daughter fights leukemia for the third time! I am searching other blogs of people going through what I am going through and I found yours. So tonight I'll say a little prayer for you too. If my daughter, Kristen and I can do this for a third time...Anyone can!

Anonymous said...

Wow, what a roller coaster you guys have been on in the last year. I just wanted to let you know that I was thinking of you, as I often do. I was so glad to read that Olivia was quite the performer in PICU for her short stay, we wouldn't really expect otherwise. Also good to hear that she's teaching those new girls how to use the monitor as well:-) I didn't get a chance to go up for a visit (I was working in PIC that night), but am glad it was just a short stay. Take care of each other & stay strong as your amazing family always does. Give Livvy loves from me!!
Erika, RN