I am writing from Elkton, Maryland a day and a half or so after a red-eye flight out of Sea-Tac, a mediocre sleep on the plane, and a two hour power nap once we reached our good friends' home. Today is a day of relaxing which for me means watching the SPEED Channel during the day and the Final Four tonight. For Kelly and her good friend Lori, it means a manicure and a pedicure in Wilmington, DE for some much needed girl time. Tonight, I'll bring a little West Coast/Pacific Rim grilling to this little East Coast town with some Beaver Chicken (basically teriyaki but far superior).

The appointment at Johns Hopkins is scheduled for Tuesday morning at 8 am ET. We have no idea what is in store, what the doctor will recommend, what types of treatments I am even eligible for based on my diseases and treatment history. All we know is that this doctor has seen as many if not more patients than anyone with my conditions and we are seeking the best medical advice available. Frankly, we are trusting that God has already given this doctor the wisdom to guide us through this process, whatever it may be.

Your encouragement and your prayers have meant so much to Kelly and I as we have prepared for this trip. The planning, the reservations, the timing...everything has seems as thought God has orchestrated this from the beginning. That should come as no surprise, should it? The maker of the universe should be able to conveniently schedule a doctors appointment during our spring break. Yet even the most mundane and seemingly insignificant details I often chalk up to coincidence should be recognized as divine moments where God literally reaches down, firmly grabs my shoulder with his massive hands, and guides me.

This post would be incomplete without me venting my continued frustration with the lack of progress in my blood counts. I feel like I need a punch card for blood transfusions lately. I have had to visit the hospital at least a day per week during the past month for one reason or another, capped by a full day of taking two units of blood and platelets on Thursday to "top off" before taking off during spring break. It is survival right now but it is all we can do.

As for this weekend, Kelly and I are going to enjoy our first visit to this part of the country. Annapolis Sunday, DC Monday, and Baltimore Tues...Not a bad weekend for boy from Corvallis, OR and a girl from Kelowna, BC.

Happy Saint Patrick's Day. I was really worried tonight, however my worry did not begin with a sub-par blood draw yesterday or a general feeling of fatigue that comes with low counts. When I arrived at the hospital at 6 pm to receive another two units blood, I thought to myself, "Day one of the NCAA tournament is probably not a bad time to be stuck in a hospital room with nothing to do but watch basketball." Once settled, I simply asked the nurse to bring the portable TV arm close enough so I could get started with tournament action. The worry set in when the damn thing would not turn on.

Nothing to do but watch tournament basketball and I DON'T HAVE A FREAKING TV. Considering my options, I was about ready to inquire with the nursing staff about a simple fix or another room when it dawned on me...live games online, and I remembered my laptop. God is good.

As I write I'm watching Gonzaga and St. John's duke it out and Gonzaga has an early 32-21 lead. Gonzaga is what I like to call a "homer" pick in my bracket. I end up picking a bunch of teams based on a clear west coast bias, regardless of seed or match-up. It usually buries my bracket early but I can sleep at night. One of these years all my Pac-10 (or should I say Pac-12) teams (and other west-coasties) will work their way to the Sweet 16 or the Elite 8 and the tournament will belong to me. Until then, I'll keep lighting $5 on fire every year and enjoy watching every other team advance.

So here I am in the hospital again on a Thursday night getting transfused with Red Blood Cells. The counts have been worse but we saw a trend this week as I got checked, and after taking platelets on Monday night I knew that I would need blood again to get me through the next couple weeks. Here were the counts yesterday, March 16:

Hemoglobin: 5.9

Hematocrit: 17.1

Platelets: 28,000

The platelets are obviously higher because of Monday's transfusion but the writing was on the wall for the red cells. Not wanting to give up any weekend time, I decided to come in as soon as possible and take care of business after school. It will be a late night tonight, but it will be done and I can function on Friday and enjoy my weekend.

It is so frustrating to be so dependent on something so essential to health and life. Think about it, I am literally plugged into a fueling station that is letting my motor continue to run. Whatever function we humans are designed with to sustain our own fuel with only the simplest of building blocks is non-existent in my body right now and that kind of scares the hell out me. I can't help but think about how long this is going to last, having to get hooked up on a weekday evening just so I can turn around and head back to the day job and contribute to society.

The question came up between Kelly and I if I should still be working, considering the mental and physical demands and how they may or may not be affecting my health. Neither one of us could even decide for ourselves what the impact is and therefore we could not come to a conclusion. So indecision defaults to the norm and the alarm is set for 5:30 tomorrow morning so I can prepare my classroom for another day of 12 and 13 year old learners.

In the last blog, I described our efforts to travel back to the east coast to meet with a new doctor that could partner with us in treatment options. I am extremely happy to announce that thanks to a relentless pursuit of results by my wonderful wife, we are scheduled for an April 5 appointment with a doctor at Johns Hopkins in Baltimore, MD. We are realistic that we may leave with as many questions as answers but this medical center and this doctor have treated as many if not more patients with my conditions than any other. The experience alone gives us confidence that we are moving towards the best treatment options and the best hope for my future.

As much as I am relying on God's strength right now for everything, my heart is heavy for friends and family that are living through trials of their own. My prayers for others include defibrillator surgeries, job loss, and recovery from surprise heart attacks. I spend as much time thinking about and praying for the closest family and friends, knowing full well that the stress and weight of worry can be as debilitating as the affliction itself. Being strong for those you love needs just as much divine intervention as fighting the battle itself.

Gonzaga is up by 14. Looks like I might get a "homer" pick after all. Maybe the Dawgs will show up tomorrow and really make me glad I picked from the heart.

Brian

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!

The battle of health compromization has a unique list of casualties, the most recent being a trip that was planned with a great group of guys to the the Pac 10 Championships of Wrestling in Corvallis, OR. Most of you know that Corvallis is my hometown and almost more so than the wrestling, I was looking forward to playing host to our coaching staff and several Squalicum wrestlers along for the trip.



As the trip approached and plans were solidified, the wiser half of our household leadership committee (Kelly) brought to my attention some factors that I was aware of but had chosen to ignore for the sake of really wanting to go on the trip. Factors such as 6 hours on the road, sleeping in hotel rooms, still nursing a cold, fresh off a platelet transfusion on Wed., and the possibility of needing red cells before the weekend built a strong case toward staying at home for the weekend. I reported to the committee that all points were valid and that I would need the next day to mourn the loss of the trip and be ready to move forward by days end...the committed agreed.



Now back in the saddle, after a weekend of REST at HOME, I am ready for a full week of work and am grateful for the love and support of those closest to me that absolutely have my best in mind. I heard the weekend in Corvallis was unbelievable, especially the Huli-Huli chicken from Local Boyz Hawaiian Cafe but I couldn't have been happier resting at home with the family.



As mentioned earlier, I did have to receive platelets on Wed. night when the count dropped to 6000. The red cells had also fallen but I was not feeling symptomatic so we decided to hold off and get drawn again on Friday. I had already began to make plans to be in the hospital on Saturday morning to receive another transfusion. Expecting the worst, I logged onto my hospital patient account and read that the Hemoglobin had gone from 5.4 to 6.0 and the Hematocrit was up to 18.2 from 16. Remember that these counts are still critically low and most people can't walk with these numbers, but if I am not getting blood at 5.4 then I'm certainly not getting it at 6.0. We celebrated mediocrity that night as a family by going out to mexican food.



I will get another blood draw Tuesday morning in an effort to stay on top of what are still very critical counts. We are constantly praying and hoping for stability first and growth second. The meds are still not showing much progress, however my kidneys seem to be doing better and better at allowing the higher doses to process in my body. It will take sustained higher doses of meds to get things turned around and even then it will be slow. Continued prayer for progress and patience is appreciated.



Kelly and I are starting to do more research in the areas of Aplastic Anemia and PNH and we are learning that there are treatment options that might be worth looking into in the future. Without getting into too much detail, there are doctors across the country that specialize in these particular diseases and have treatment protocols that we have only been made aware of recently. We are starting the process of arranging consultations with these doctors to see if there are new stones to overturn.



I can't thank all of you enough for your continued prayer and support. It has been difficult but God is using each and every one of you to lift up me and my family and allow us to endure through this season. God Bless!



Brian

Uncertainty and lack of progress still plague my increasingly busy schedule. Friday morning (Feb. 11) I had a blood draw that showed that my Hemoglobin and Hematocrit had fallen to 5.6 and 17.0, both of which are critically low. I decided to get the ball rolling myself by calling two doctors, scheduling a blood transfusion to help me feel as good as I could feel, all things considered. I literally did everything in my power to make sure I would get "plugged in" as soon as possible, which meant I had to cancel our middle school wrestling practice to get to the hospital in the afternoon once my teaching obligations were met.

So, ready with about 5 hours of time killers to get through the transfusion, I showed up at the hospital at my scheduled time of 3 pm. Admitted, in a hospital room, and happily reading ESPN the Magazine, my nurse comes in and informs me that my blood (which of course is almost as rare as my running list of conditions) has yet to be driven from SEATTLE and the soonest it would be here is 5 pm. Are you kidding me?

Knowing that a 5 pm start time may or may not get me a hospital tray upon my return, I decided to give in to mounting week long craving for a Boomers burger. If I couldn't refuel my system then I would at least refuel my stomach. It's amazing how much one can find peace of mind over a Boomers burger, waffle fries, an Oreo shake, and a copy of the Echo Ads.

Before leaving the hospital, the nurse and I agreed I would just show up closer to 6 unless I heard from him otherwise, and a call to my cell phone at 5:30 confirmed that the blood was not ready yet and there was no point in coming in earlier. However, I was out and about and listless so I went to the hospital anyway to just check in and visit Kelly who works only one floor above. As I'm walking into the hospital lobby, the nurse blows up my phone to inform me that the blood would not leave Seattle until 8 pm and would be arriving no later than 10. At this point my heart just sunk in my chest and my frustration was overwhelming. Did they know what my numbers were? Did they know I had somewhere to be tomorrow? Did they know the unit closes at 11:30 pm and I would have to be admitted overnight to get the blood now? I was ready to drive to Seattle myself, not to get the blood but to unload on the incompetent employees of the Puget Sound Blood Bank that were slowing my life down.

Here I pause. My condition should slow my life down. I should be "taking it easy." The schedule I run and the energy with which I run it is unnatural considering my current condition. All I can say is that I can't help it. I thrive on the passion with which I teach and coach. I feel energized getting up early in the morning, putting on a pressed shirt and tie, and working with middle school students all day. I receive a second wind walking to the locker room to get ready for wrestling practice or during the 15 minute drive to Squalicum to work with the Storm wrestlers. One of the reasons I wanted the blood Friday night was so that I could be recharged and ready for the girls regional wrestling tournnament at Sedro-Woolley High School on Saturday (where one of our girls took 3rd and qualified for the state tournament...GO STORM!).

The decision was made to schedule the transfusion for Sunday morning at 9 am when the blood would be ready, I would be rested, and there would be no further scheduling conflicts.

And that is where this blog finds me...sitting at the keyboard of a Dell net-book, washing down graham crackers and peanut butter with grape juice (hospital staples), watching NASCAR qualifying for next week's Daytona 500, and receiving 2 units of much needed red blood cells.

I describe the source of my daily energy as "Hybrid like," but without the battery. I always feel like I have the energy to do what I want and need to do in my daily life. There is no other explanation for this sustained energy than God given. Forgive me for any cliches that may sneak in here, but in my mind there is only one explanation for my ability to carry on. My physical and mental strength is being upheld and sustained by God almighty, who has my best in mind, loves me more than anything in the world, gave is son for me that I might have life in this life and the life to come.

I am absolutely hooked on Zac Brown Band right now. The song "Let It Go" provides anthem-like lyrics for me as listen:

Keep your heart above your head and your eyes wide open
so this world can't find a way to leave you cold

You know you're not the only ship out on the ocean

Save your strength for things that you can change
forget the ones you can't
You gotta let it go!

It makes it easy to let it go in the hands of the Almighty!

This week has been one of the sweetest weeks of my professional career. From the moment my students walked into the classroom, I felt like I was home again. All the confidence and assurance of choosing the right career for myself came flooding back in an instant as I found myself greeting, talking with, helping, and even bantering with students again. Of course each day brought a moderate stress load of prep and planning, but I was able to manage.

The staff at Shuksan was amazing in welcoming me back and checking on me daily to make sure I was maintaining energy levels and making sure I had everything I needed for the four different subjects I am now teaching. I found it so easy to tell them that teaching was giving me more life than it was taking and I was so glad to be back.

The most difficult part of this week physically has been managing sleep. As I have said before, high doses of different meds affect sleeping and waking at inopportune times, waking me up too early or not letting me go to sleep soon enough. In spite of this, I have felt well rested this week and God has been faithful in allowing me the rest if not the sleep quota I set for myself each night.

I am now getting blood draws once a week to maintain progress and the most recent draw (Tues. Feb. 2) continues to show stability and even moderate improvement:

Hemoglobin: 7.0

Hematocrit: 20.6

Platelets: 10,000

Other counts that we are looking at closely are kidney and liver processing levels. Some of these counts have started to rise above what is safe and acceptable so we are adjusting doses of certain meds to keep those under control. It is a fine balancing act between giving my blood what it needs and not overwhelming my organs with toxicity. Please pray that the organs can handle the necessary doses of meds to sustain my improved counts.

I continue to take daily meds for my Aplastic Anemia and I visit the infusion center for an IV drug once every two weeks to treat the PNH disease. There are moments where I feel so dependent, but I am grateful for the modern medicines that allow me to function as I am. God is faithful in so many ways.

Moving Forward

One thing about heavy doses of medication is that it messes with sleeping and waking. Up earlier than usual today, I find myself grateful for the time I have to drink buckets of coffee, do a little Ebay shopping, and sit down to write another entry.

During my scheduled infusion on Tuesday, my doctor answered a point blank question about whether or not I should return to work. He actually told me that my counts are stable enough and showing enough improvement that he okayed me to return to work next week. He even went as far as saying that a full return is okay to preserve any remaining sick time I still have stored. The major concern was risk of infection which has always been a risk for me. Kelly and I were more concerned about risks related to stress of work and how that might affect progress. The doctor reassured us that the medications will do their work in spite of the day job.

Neither Kelly nor I are naive about how work and stress can affect the physical body. Much of our "return to work" conversation was peppered with questions like, "What time are you planning on getting to bed?," and, "What time are you going to get up in the morning?," followed by, "Do you have anywhere you can rest at school during the day?"

Although my schedule will adjust, returning to work will be refreshing and live giving. I love teaching, working face to face with students, coaching, and collaborating with other staff in my school. The beginning of the second semester provides such a clean new beginning for myself and my students, so much so that I am enjoying those early September butterflies all over again as I prepare.

The Numbers Game

The one question that most people have when I speak to them face to face is, "How do you feel?" I love answering that question because I can give the most positive and honest answer. I feel great, in spite of the numbers (the numbers are still keeping me humble, and serve as a reminder to not push too hard too fast.)

Here they are as of Tuesday Jan. 25:

Hemoglobin: 6.4

Hematocrit: 18.8

Platelets: 12,000

Although the red cells are not showing progress, the platelets have shown stability and even the slightest growth. Keep in mind the difference between 6 and 12 is NOTHING when compared to the low end of normal which is 150. Platelets however are a good indicator of early growth.

As I write I am listening to one of my top 5 favorite songs of all time. The song "Hold me Jesus" by Rich Mullins has resounded as an anthem in my life for more that one ailment or trial. Here are some of the lines:

"Sometimes my life just don't make sense at all,

when the mountains look so big and my faith just seems so small.

So hold me Jesus 'cause I'm shaken like a leaf,

You have been King of my glory, won't you be my Prince of Peace."

and...

"Surrender don't come natural to me.

I'd rather fight you for something I don't really want,

than take what you give that I need."

Thank you all for your prayers, your thoughts, the meals, the gifts, the calls, the visits, the emails, the comments, and every other countless way you have blessed me and my family. Everything has served to strengthen our faith and our spirits during this continuous battle. I thank God for all of you!