Flirting with Fevers and Hitting a Speed Bump

First of all Happy Birthday to my parents!  Yesterday was 75 for mom and today is 79 for Dad.  Some people are funny about their age, but I think that it pretty impressive for them to hit these milestones.  And I especially admire how much they still do each day to try to help others.  Love you guys!!

So the chills/fevers have gotten a bit worse each day.  The blood cultures (think science class petri dish experiment to see if bacteria grows) have continued to be negative.  But over the weekend the fevers got high enough that I had to "call-in".  I was worried they would re-admit me, but so far they have let it ride with some Tylenol and more tests.  Today I saw the doctor and they started me on two antibiotics to see if it will help.  I also had several other tests done and will get a CT scan this week.  Hopefully they can identify the source of the fevers before too long.  It is most likely why my platelet count has been dropping so much.

We also got some bad news today.  My biopsy results came back and although there was no evidence of disease in the peripheral blood or the standard bone marrow slide, the much more sensitive FISH test detected about 5% of bone marrow cells with genetic mutations consistent with my leukemia.  This is obviously not a great thing to hear at Day 68.  We knew going in that secondary AML is a tough, resistant disease and that this transplant was in no way a guarantee to get rid of it.  But when you are fighting so hard to stay positive and think about beating it, it is tough to hear it isn't going the way you had hoped.

The doctor was very good with me and said we will get thru this. It must take such special people to work in Oncology and to be so caring and supportive with the job they do. There are definitely treatment options that are effective and they did find it early on.  So the game plan seems to be:  first - take a few days to get the fevers under control and rule out any viruses/infections.  Second - start me on a chemo that is targeted at trying to "re-program" the mutated cells.  This chemo was developed by the Germans and is supposed to be pretty mild and has been effective in this situation.  I will do it on an outpatient basis for one week, then take a three week break. Third - drop me off of immunosuppressant drugs pretty quickly to let the Graft vs Tumor (GVT) effect have a chance to kill some leukemia.  That is where the donor T-cells would recognize the leukemia cells as bad and attack them.  Ideally, the docs would like to wait another month before doing that because now I will be at higher risk of Graft vs Host Disease (GVHD) where the donor T-cells will see my normal organs as foreign and attack them too.  But my donor cells came from a really smart dude, so I am praying that they only needed about 68 days to figure things out!  Down the road I will likely get a boost of donor cells as well that are sitting on ice to help super-charge my cancer fighting immune system.

I have an awesome family and we all got a chance to chat tonight and encourage one another.  Each sibling had something to say that gave me hope and support.  Brant as always is my rock.  We will get thru this.  I turned on Pandora while sitting alone in the infusion room (Mom had stepped out to get me some lunch) and I heard several great songs.  This one really stuck with me.  I hope you will listen, too, because it really applies to all of us when things get tough.



Well I have had enough tears for today and am ready for bed and to wake up tomorrow to face a new challenge.  Remember to be thankful for every day - the good ones and the bad ones.