With instability being the only constant, my extended weekend began with a simple step of faith and proceeded with what I would consider an divinely orchestrated plan. God has an amazing way of sending us little messages, nudging us in seemingly awkward directions, and finally showing us the map after we've reached our destination. This is just as true for a short weekend as it is for the navigation of our entire lives.


On Thursday night my wife stopped by our Shuksan wrestling practice with some concerns of her own, and in our conversation she asked how I'm "feeling." That is a loaded question and the answer always differs depending on who I'm talking to, but I know what she wants to know and I didn't hold back. I was beat down...exhausted! I knew my counts were low and it takes REALLY low counts for me to be able to feel that weight.


The first step is always to get my blood drawn, so a planned Friday morning blood draw was bumped to Thursday night and sure the enough, the numbers didn't lie:


HGL 5.2

HCT 15.8

PLA 10,000


The Hemoglobin and Hematocrit were as low as they had ever been, which was no surprise. The best way to describe red cells being that low is that I can literally feel the weight of my limbs hanging from my body without lifting them, I can feel my pulse race over 100 bpm just standing up, and it can even effect the clarity and quality of my speech if I talk too fast. I needed rest and I needed blood.

For those of you who have read previous posts, you know that ordering and receiving blood products is not necessarily a slam dunk. Ideally, I would take a sick day on Friday, go to the hospital for a blood transfusion, and feel much better sooner than later. The decision to take the day off on Friday came out of self preservation and no promise of blood being available that day. In fact, I anticipated resting all day and planning on a Saturday transfusion that would leech half my weekend.

Here is where God took over my schedule. I received a call Friday morning letting me know that one unit of blood was already available and in Bellingham (what are the chances of that) and I was to come in right away. The second unit and platelets would be available later in the day, conveniently after I went and coached our first Shuksan wrestling match of the season over at Fairhaven Middle School.

A quick stop at Subway for a Chicken Bacon Ranch Sandwich (with chipotle sauce) and I was back at the hospital for round two late on a Friday night, thus taking advantage of a precious sick day and getting needed medical attention. More importantly, I was able to preserve my entire weekend for precious time at home with my family. A morning of homemade blueberry buttermilk pancakes and sausage (yes I am the chef) sure beats an IV start with a type-and-cross at St. Joe's.

The most difficult realization this weekend was the reality that the blood counts are not improving with current treatments. We are incrementally increasing doses as the kidneys can handle it but so far there is no progress. In my last post, I mentioned that Kelly and I are seeking out other possible treatments and not limiting ourselves to Bellingham or even the state of Washington.

Since the last blog post, we have forwarded my medical records to Johns Hopkins medical center in Baltimore to a doctor that has specialized in Aplastic Anemia and PNH for years. Once Hopkins reviews my records, Kelly and I will fly to Baltimore for a consultation to talk about the best options for treatment and our future. One treatment in particular would involve returning to Baltimore for the summer to undergo an aggressive but potentially successful treatment for patients with very similar case histories.

The point is, there is HOPE! Hope for new information. Hope for discussions of curing rates versus long-term medication management. Hope for a future!