Monday, July 12, 2010

Hemolysis???

We just got back from the hospital and I will try to fill you in, although it is complicated and I am not even sure I understand it all.

I could tell Dr B was a bit worried today. A week’s worth of fevers (not good)..the other physical signs (not eating, more sleeping) and Ally’s bilirubin levels were up. This can indicate something wrong with the liver. We had to go to ultrasound and get scans of her liver, kidneys, gall bladder, spleen, and bladder. The tech took 71 pictures, which had me very nervous that something must be wrong. About the time we walked back upstairs, Dr B brought in the radiology report that everything was fine. I nearly collapsed from relief.

He ran all sorts of additional blood tests on her…some looking at different viruses that may be causing this. But usually viruses don’t last a week, so that was sort of secondary.

He put all her blood tests results from June and July side by side and started looking at the trends…from a leukemia perspective and the possibility of relapse all of her numbers looked good. Her ANC was trending down, and hemoglobin, etc…indicating that the chemo is doing what it is supposed to do. They saw no blasts (cancer cells) in her blood. He did see that the bilirubin was trending up (not good) and also that her red blood cells were not holding up as they should have been. They were destroying themselves (or something was destroying them). He saw a few odd things on the smear of her red blood cells that have never been there. The bilirubin was up as her body was trying to get rid of these immature red blood cells.

He is a very smart man and he put all these things together and says he thinks she has a condition called Hemolysis. It can be caused by a virus or it can be caused by drugs. It is very rare. He has never actually seen it be caused by drugs, so he believes she had a virus that caused it (thus the fevers and not feeling well). He ran yet another test (Coombs test) to determine if her red blood cells do in fact have antibodies working against them. He will call with the results.

He told me not to worry. It actually has nothing to do with the leukemia…it is separate blood condition. First and foremost, it is treatable and not life threatening, etc. We have to go back Thursday afternoon to see if things are still trending up (the bilirubin) and check another CBC. At that time he will determine a treatment plan which will most likely include several weeks of steroids (yuck) and also and IVIG infusion…immunity booster which she has had before.

He said it is really rare, but we all know that Ally seems to find the rare things (eg pancreatitis). In his typical Dr Broxson manner he put me at ease and I cried tears of relief after fearing a relapse was imminent.

We are not certain this is what it is, but I am thinking and hoping he is correct.

Ally has not had a fever today and just ate some chicken noodle soup and a cookie. A start. She seems to have a little more energy too. She says with a smile that she really wants to go to golf camp tomorrow. I caught her singing a few times and doing goofy voices with her sister. These tell me that she is feeling better. Her stomach has not hurt today yet.

Sorry for the long bit of medical information. Just wanted to try to capture it all before I forget myself. Having a (possible) answer has helped me out a lot. Not knowing is the worst.

I am hoping to see continued improvement. She hasn't seen the pool in about 8 days now (a world record for this summer)

4 comments:

  1. Keeping you all in my thoughts and prayers. What can I do?

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  2. Oh my gosh....haven't checked in for a while and I can't believe all of this. Crazy, never heard of it. So bummed things aren't going smoothly quite yet but hopefully they can fix this and everything will be okay. Even though we haven't met, I can tell how strong she is and she'll get through this. She's come so far and just thank God it's nothing to do with leukemia. I couldn't read these posts quick enough to get to where you said it has nothing to do with it. Praying for you all always!
    Diona

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  3. So gald to hear he knows what is wrong and its treatable. Hopefully she gets to feeling better soon.

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  4. Thank GOD! We'll continue to pray for Ally, as well as the rest of your family and Dr. B.

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