Off Study

As of today Johnny is officially off study.  Things just aren't going as planned, so moving forward the doctors are solely focused on doing whatever is required to treat Johnny's unique situation as effectively as possible.  Julie and I had a conference this evening with about half of the leukemia team.  The big guns; Dr. Horton, Dr. Margolin, and even Dr. Dryer came, along with a bunch of other doctors involved with Johnny's care.  This team (along with several additional doctors not in attendance) have been pouring over the data from Johnny's blood work and marrow biopsy.  There are a lot of irregularities.  There are definitely less lymphoblastic cells in the marrow, but they are seeing a lot of irregular myeloid cells.  That seems to be why there is such variation in the results from the tests done this week.  The doctors now believe that one of two scenarios are happening, but unfortunately we will need another bone marrow biopsy to confirm which.  The first would be that the chemotherapy is working causing fewer lymphoblastic cells, and that the GCSF is causing clones of the myeloid cells  causing the higher blast counts.  This would be very good because it would indicate that we are making real progress against the leukemia, and have a real chance at getting to BMT at the end of this block.  Johnny is now off of the GCSF, so if this is happening we should see some reduction in the immature myeloid cells and his blast count should come way down.  All of his tests results would then show he is at or near remission.  The second scenario would be that Johnny's leukemia is mutating into AML (Acute Myelogeneous Leukemia), or he has developed AML on top of his ALL.  The doctors say this scenario would be very, very, unusual, but not impossible.  

The entire team felt confident that although it seems as though his blast count seems to be increasing quickly he isn't in any immediate danger, and they all feel it would be best to wait until we know which of these two things are happening before continuing with treatment.  If the current protocol is working he will continue with the scheduled treatment, but not start until we have the results from next Monday's tests.  If he now has AML then he will start a completely different type of leukemia treatment.  AML treatment is pretty hard.  All the protocol options for AML are similar to Option 1 described in an earlier post.  Unpleasant and very dangerous.  No one wants to start Johnny on AML treatment until we are sure that's what he actually has.  If it turns out Johnny now has both ALL and AML then the doctors will put together a type of hybrid treatment plan.  

Over the last three months Johnny has faced many very dangerous challenges.  He has battled bacterial and fungal infections that could kill you or me, and he now seems to be making progress against his main foe, ALL.  I'm finding it hard to believe that after all that he may now be looking at another, even more aggressive, form of leukemia.  I know that if that turns out to be true Johnny will roll up his sleeves and continue the fight.  He truly is made of steel.

Oh, BTW.  Julie totally lost it with one of the doctors earlier today.  When I got to the hospital the kids couldn't wait to tell me about it.  I think Sophie was a little freaked out (Julie's not usually much of a yeller), but the boys both seemed to think it was pretty funny watching Julie go off on someone (other than them).  That may have been why we had such a turnout for this evenings conference.  The doctors probably felt there was safety in numbers.    

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Alright, alright, let me explain myself...  Yes, I did go off on a poor, innocent, brand new fellow.  Before she even told us her name I was asking her questions (possibly badgering her) I knew she couldn't answer.  I could feel a scene coming on, so I asked to step out of the room to discuss Johnny's treatment.  I may have been a little loud and maybe a little defensive, because it was no time before the nurses cleared out and the charge came in. I was emotional, and probably a little loud, but tried not to get too crazy on her ass.  

I wanted answers and to start treatment right away.  Screw the trial. The past week we have waited all day (until 5 or 6 pm) for test results, get bad news, no definitive answers and told "Let's see what tomorrow's test show."  Johnny's blasts are up to 81%, low platelets, plus a bunch of other crazy blood numbers and he looks and feels like he has cancer again.  Come on people, what more do you need?  My thought is simple:  We know he's not in remission, his blasts are coming up and treatment starts on Monday -- why wait until his blast's are 100%? Let's start now -- who cares what f!@&  the FISH test says or whatever it is we are waiting for -- just move!  Chop, chop people. 

Wow.  You raise a little hell and doctor's come running.  It wasn't even 30 minutes before the attending came by to bail out the fellow. I was slightly nicer, but was still emotional (you know, big, crazy eyes, arms flailing, foaming at the mouth) when I asked the same questions -- why wait for treatment?  She had the same answers from last night -- 'Because it could be something else, and treating the wrong thing (or possibly nothing) could do more harm than good, let's wait until we know what we are up against.' My next question was, why wait until Monday -- get the BMA today and move forward.   -- 'We can't because Johnny's been on GCSF, we could still get confusing results and wouldn't help the situation, we need a few days off GCSF to get a better and hopefully correct result.'  

huh.  whatever.  I was too upset and mad and confused to really listen, no matter how much sense it made.  I apologized to the fellow and said I know this wasn't her fault, I was just frustrated --  Johnny's come too far and I wasn't about to let cancer get him now.  

Our doctor's knew I wasn't satisfied and said they would be back later with 'something'.  My heart sank when I saw Dr. Dryer walk in and ask us to step into the conference room.  I knew it was going to be bad news when she told us all of the other doctor's were joining us too.  Actually it wasn't too bad.  Oh, don't get me wrong, it was the same information we had before, but we got to hear the details as well as every one's perspectives.  The doctors feel this most likely is the GCSF -- it presents the symptoms Johnny's had all week.  But, it could be a combination of ALL and AML, or he might just have AML.   You know you can get cancer from cancer treatments... 

Anyway, we just have to wait until next week for possible answers.  Everyone agreed that if Johnny's counts start acting really strange this weekend, they would intervene. As Mike and I talked about the last 70 days, it may be that when Johnny was septic, or had fungus, or his heart was racing, things happened really fast -- bedside.  No one consulted anyone, they just treated him. But this is much more difficult to diagnose, and if they start the wrong chemo really bad things can happen.  I know once they figure it out we will be on the path to transplant. 

So I guess I went off a little today (okay, a lot), but I'm Johnny's mom and have to make sure I have done everything within my power to make sure he's getting the best treatment possible (and he is).