May 22, 2004

Main Page • John's Journal (2000-2003) • CLL Information • Contact John • Seattle Cancer Care Alliance • MD Anderson

Blessed is the man who has persevered under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him. James 1 :13

Sitting down to write this journal has been a challenge because of the magnitude of what all happened last week and due to the fact that my body is pretty thrashed. Thanks to Jeff and Michelle for posting updates to my journal while I was unable to do them myself.

Last Sunday night with my family was a perfect closing to what had been a pretty smooth week. Well, my doctor warned me that at some point the honeymoon would be over and things would get tougher. She was right. You may remember my journal entry last Tuesday where I am walking through Seattle, exercising in the gym, thinking this whole transplant process is a piece of cake. Things changed as I awoke from bed on Tuesday night with a mild fever of 99.2. I called the doctors and they said the fever was pretty low grade and to check back in the morning.

I arrived at clinic on Wednesday morning clearly dragging. The nurse checking my blood could tell I was not doing too well and so she sent me to triage (special nurses station) where they worked up my vital signs and found my fever was up to 101. Along with the fever I had a solid headache so they had me lay down in the clinic most of the day as they kept me warm, continued to monitor my vitals, gave me Tylenol to lower the fever, and IV antibiotics to combat the fever. Despite their efforts, my fever continued to climb and the decision was made to send me to the hospital. Not the day I was hoping for.

Entering the hospital was tough for me. I had hoped that my one evening in the hospital to acquire my donor cells would be it. Ironically, I was given the same room in which I had received my donor cells. At least the view was good and as always, the staff was wonderful. No time was wasted as they ran vital signs, sent me down for a chest x-ray (which proved clear) and got me started on more broad spectrum antibiotics. They ran cultures on my blood, my stool, my urine, you name it, but nothing was showing a source for the fever. All we knew was that it just kept climbing. My fever eventually hit about 104 and just stayed there, with the occasional dip to 103 with some Tylenol. I was on fire and uncomfortable.

I appreciated all the visitors during this time, because I was in need of a lot of encouragement. This journey is not one to go easily alone and having support makes such a difference. Even though I wasn't always the most coherent person to visit, the encouragement still meant so much to me. I really felt prayers coming from outside the hospital as well. Thank you friends - "A friend loves at all times, and a brother is born for adversity." Proverbs 17:17

Saturday came and no source of my fever could be detected, yet things continued to get worse. My new marrow cells were trying to engraft and this high fever/mystery infection could have a negative effect on the process. I was awfully alarmed at this point. Blood counts indicated that I needed blood since my counts were dropping fast and I was neutropenic (level at which your RBC, WBC, hematocrit, and platelets are dangerously low.)

The infusion of the RBC's went very smoothly. The trouble started with the infusion of a bag of platelets (platelets are cells that help your blood clot). I had a very bad allergic reaction to the platelets. Upon the platelet infusion my heart rate soured to a pounding 270 beats per minute. (195 bpm is the fastest I've ever achieved on my bicycle) I could barely catch my breath. The room quickly filled with over a dozen doctors and nurses and we had an emergency on our hands. They were hooking me up to EKG equipment and preparing for a possible heart attack. Orders were flying everywhere and I just held on and prayed, gasping for every breath. I looked over at Michelle at the side of the room and her eyes displayed the same fears as mine. I have to give much credit to nurse Joanie, in yellow, she was in my face forcing me to focus, breath, and fight. She completely had me lock on and her eye contact and firm coaching carried me through. The doctors hit me with a dose of Benadryl, Hydrocortisone, and Tylenol to pull me out of the reaction. After I came down from the reaction they sent me down the hall to ICU and put me on a variety of steroids. Skin rashes and redness clarified the source of the fever which was GVHD (graft verses host disease) in my skin. It was early for GVHD, but it was clearly the culprit. Miraculously, the steroids such as prednisone and more Benadryl calmed everything down and my fever dropped down to normal within a few hours. God had carried me through one of the scariest moments of my life. I had real fears for several moments that I wasn't going to make it. God's plans were different.

One of the strange after effects of all the prednisone they gave me was the visions I kept having. Each time I would close my eyes I would see all kinds of strange and unusual images, some very heard to explain and it made it heard to rest. I modeled one of my visions for my wife's sister, Krissy.


I would often wake up from a rest and think something was wrong with my children and that I needed to go rescue them, yet it was 2:30 in the morning and they were safely home in bed with grandma and grandpa nearby. Drugs are strange, I'm glad they're not a vice to which I cling. Too freaky for me. These strange effects have worn off in the past few days. Thankfully.

One of my favorite doctors, Dr. Webster (tall blond on far right) from my early appointments at SCCA came by to visit me with here acapela singing group. You may remember she did that beautiful lumbar draw on me a while back. Her group sang so beautifully. I really appreciated the uplifting music and I still hold Dr. Webster as one of my favorites. She clearly cares deeply for her patients. A special lady indeed.

After about eight days in the hospital it was finally time to come home to the apartment. Even though the apartment isn't actually home, it is home to us now and it certainly beats the hospital. I am now under the care of the most wonderful nurse ever, my wife Michelle. I could not do this without her. My love for her is indescribable and I am so blessed to have been gifted her from Jesus.

Here's a little note to my friend Tanna, back in South Dakota:

I just want to close my journal entry from a song I kept playing on my IPod these past few days:

Say Hey-Make It A Good Day by FFH

However long my feet have walked on this world,
We've all lived long enough to know.
Sometime life will go our way,
And other time it won't.
But still I've got this joy inside of me
With each new dawn I do believe to

Say Hey, It's a Good Day
Jesus is Lord and I am Saved, So, Say Hey, It's a Good Day

Circumstance and situations change
You know life can turn on a dime
But there's a constant hope and peace
That I have come to find
And it's all because of who God is
And that He is Live and I am His, So

We are all as happy as we make our
Minds up to be
I have just decided that nothing's gonna
Take this joy from me.

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