Journal entry by Leslie Cavanaugh

Alyssa continues to make progress, but at times feels like 2 steps forward, 1 step back.

Last week she traveled to CCHMC for 2 IVIG infusion (to boost immune system that’s routinely administered every couple months) and her port removal.  She was told a few days before all this that they would also like to add a bone marrow biopsy while she was under anesthesia. The reason being is that her blood counts (WBC, platelets, ANC, etc) have all been slowly declining the past 4 weeks.  They will normally see dips in her numbers, but they will almost always rebound in the next week or so.  We didn’t think too much of it until we got up to Cincinnati.  Dr. Nelson then proceeded to tell us that he was not going to do the port removal until we got results back from the biopsy. I’m getting scared.  Then he just said the words out loud that I never wanted to hear. “You need to prepare yourself for the fact that your leukemia might have come back”. I honestly couldn’t believe he just said that and quietly start crying.  Alyssa, as usual, just looked at him and said, “well if it is back, then we have a plan, right?”  He said absolutely, there are lots of options still open.  My daughter has to be one of the strongest women I’ve ever known.  I know I’m biased, but her attitude just made me feel shameful for crying in front of her.   So, the biopsy was done on a Thursday and he said it would be 24 hours before he got the first preliminary report back.  As you can imagine, it was the longest 24 hours of my life.  Friday afternoon he calls to tell us that NO CANCER CELLS were present.  Thank you God!! They were going to run additional tests to see if they can pinpoint why her counts are dropping.  It turns out she tested positive for a virus, which along with her steroid could possibly be the cause of her low counts.  The virus is not a serious one, but it has been wrecking havoc with her GI system.  This virus would cause a stomach bug/diarrhea for a healthy person for maybe 3-5 days...for Alyssa, it may take 5-6 weeks to get it out of her system.  

Alyssa returned to Bowling Green right after her Cincinnati stay.  She had blood work done down there on Wednesday and her counts are all going back up again!!  So we may never really know what the cause was and Dr. Nelson tells us all the time that no 2 patients are ever the same as far as recovery.  He sees “trends” but everyone kinda does their own thing. She is to return to Cincinnati on August 8 for a follow-up appointment.  

We really didn’t tell anybody last week when all this was going on.  First, it happened so quickly that there just wasn’t an opportunity.  Second, I was SO afraid that if I even said it out loud, it would be true.  I’ve never prayed so hard in my life.  When we waiting for that phone call last Friday, I pulled out my Daily Devotional.  The very first lines... “Relax and let me lead you through this day.  I have everything under control: My control”  It really said that. Sometimes, it is so spot on, that I swear, somebody must be messing with my mind. I’m trying my best to take my cues from God and remember that he’s in control, not me.  Not easy to do, when it’s your baby, but I’m trying. 
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