Monday, April 28, 2014

Walking through Fire

Case here. I got in from Tel Aviv yesterday morning around 9:30am and hitched a ride with a friend to the hospital. When I first got in, Kit, Callie, and Pat were all here with Wanda and she was pretty lucid and was able to communicate and I spent the night here with her last night.

It's easy to stay positive if we're only thinking about the head problems, so let me start with that.  The blood on her brain has most definitely affected her ability to say what she wants to say. The nurses come in every hour or two and ask her a few questions followed by telling her to do various things like clenching her first, moving her legs, etc. The typical questions are 'what's your name,' 'where are you?,' and 'what year is it.' Depending on how sleepy she is, she will almost always eventually get her name out, but the other two questions are anyone's guess much of the time - "Pain City USA" was one of the responses to the location query (even though she says she's not in much pain right now). She never has trouble with the movement-on-command parts. It seems that as the day wears on, her responses become more difficult. For instance, our friend Elizabeth who is a pediatrician at Vanderbilt came by around 1pm with lunch for us and mom definitely recognized who she was and greeted her with a fully formed sentence that maybe had one or two words wrong. We took about an hour or two to eat and talk and when we came back, I asked mom who had come by to see her and she emphatically responded with 'Elizabeth!' Fast forward 30 minutes, though, and mom couldn't answer her name nor who I was. The brain is a crazy place indeed. Overall, her night was not-that-great when it comes to having coherent responses, but when 6am rolled around, she was demanding food and we were having a good conversation - obviously labored and confusing, but more complicated than just yes/no/gee. She's had a good appetite this morning and has been showing off her mental state to the slew of doctors that have come by and even went so far as to remind Dad that he needed to get the registration renewed by the end of the month on her S2000. To sum up all of her head issues - there's blood on her brain, it's stabilized, her mental function is getting better.

Now we get into the nitty gritty - why has her blood not been clotting and what about AML?

So - they know that her blood hasn't been able to clot due to her B cells creating factor 8 inhibitor antibodies. This inhibitor keeps her immune system from orchestrating blood coagulation, which means she wont stop bleeding even if she had a plethora of platelets. As far as I can tell, they have done two things to fix this, both considered temporary. First, they are giving her Novo 7 which orchestrates coagulation through a different means (??). Second, they have given her prednisone, a steroid, which should keep the B cells from producing the inhibitor. This has worked at stabilizing everything, but it's not a permanent fix.

Her bone marrow biopsy shows that she has 30% blasts, which is how they determined that she has AML. They are currently looking harder at the results of the biopsy to determine what has caused the AML (evolution from MDS, donor cells, her cells, etc), but the result of that shouldn't affect their next, immediate, course of action. She's going to need chemo to put the leukemia into remission and get us into a place where she can heal as we figure out the next steps.

OK - all of the above sounds reasonable, except there are a few problems that the doctors see. First, they don't really know why her body is producing the inhibitor. Their best guess is that the leukemic cells (T-cells, I believe) are somehow communicating with the B cells to tell them to produce the inhibitor. They tell us that they have never heard of this specific thing happening - typically they associate the inhibitor production with something like GVHD. It's not very comforting to feel like we're living an episode of House here. Second, chemo with bleeding in the brain is risky. If things go wrong, fixing it is complicated. Finally, she's already in a weakened state - far different from the last time she had chemo.

So - here's the plan, subject to change:

She'll go on chemotherapy tonight or tomorrow. Typically for AML, chemo consists of 7 days - 7 of one drug and 3 with two. Due to her current situation, they are probably going to go with 5/2 instead. Two weeks after starting chemo, they will do another bone marrow biopsy to see if the AML is in remission. If not, then more chemo. Unlike her previous chemo, this chemo will likely involve lots of transfusions of platelets and red blood cells. The doctor described this as being like "walking through fire." When the doctor asked mom whether she had any questions she laughed and said no and he responded by saying "well, I'm glad, because I probably don't have any answers."

As I said, their best guess is that the leukemic cells are causing the production of the inhibitor, but they could be wrong. If they're right, chemo will wipe out the leukemic cells which will also stop the production of the inhibitor - a good thing. If they're wrong, then she'll be very low on platelets and even if they add lots of platelets, her body will still be producing the inhibitor so she's at a high risk of bleeding. This could lead to blood building up in her brain which may mean surgery - a risky endeavor to say the least.

If all of this is successful, then we'd start talking about next steps, which may involve another transplant or something involving the lymph nodes... but the doctors aren't ready to talk about that yet. They want to get through the next 2 weeks before discussing the next steps.

So - them's the facts. For all the negativity you see above, I think there are reasons to be hopeful. First, mom looks good aside from the bruising and head issues - she has color and smiles (the permanent eyeliner was a good move for her.) Second, she reacted to the doctor's news with laughter in a sort of "well, that's where we are, let's get on with it" sort of way, which I will interpret as good of a response as can be hoped for. Finally - my mom is incredibly strong and positive and has an amazing support network of family and friends. Please continue to send your thoughts and prayers our way.
Hungry Wanda!
(The head wrap is for an EEG which has so far shown that we shouldn't be worried about seizures.) 


  1. Wanda--Gay and I are praying for you and thinking of you and your whole wonderful family..
    David and Gay

  2. Wanda, you look beautiful! Case is right about the permanent eye liner. The next picture should showcase your petite feet - yet another good feature. It's a relief to hear the plan. You're up to it! We're cheering for you and Team Taintor! Love, Trish and John

  3. Wanda and all Taintors - sending our love and prayers and strength for the journey.
    Sissie and Bill