August 17, 2004

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

“Because he loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name.  He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him.  With long life will I satisfy him and show him my salvation.”
Psalm 91: 14-16

One hundred days down, and a long life to go. Last Friday I was discharged from SCCA. I've been in SCCA's care since the middle of April. It was a wonderful, yet strange feeling to leave the clinic for the last time. My whole life pretty much revolved around the clinic for the past few months. I must admit I am a little nervous about leaving SCCA. There is a sense of security I will have to let go of. On the other hand, I am very confident in my local clinic and look forward to getting back to a more normal life.


I do wish to express my deepest thanks to the incredible staff at SCCA. As I have mentioned before, the staff there are some of the most caring and professional people I have ever met. My experience at SCCA affirmed why people come here from all over the world to be treated for their cancer. They are simply the best.


I have encountered a bit of a setback in my recovery. The goal as I was wrapping up at SCCA was to bring me off the Prednisone medication. The GVHD (Graft Versus Host Disease) looked like it was under control, but as I began tapering down my Prednisone dose the skin rash came back much worse than before. In addition, I began experiencing symptoms of a dry mouth and irritated eyes, both symptoms associated with GVHD. On my last day at SCCA the doctors diagnosed my GVHD as chronic GVHD, which means I could be battling the GVHD for a few years. Unfortunately, the treatment plan involves increasing my Prednisone dose until December. At that point, if the GVHD remains under control they will give the Prednisone taper another try. Due to the potential long-term side effects, I want to get off the Prednisone as soon as possible. I know there will be other setbacks along the way, and I am thankful we have an effective GVHD treatment strategy in place. I just need to pray for patience and trust in Him when things don't go exactly as I would like.


Despite the GVHD setback, there are no words capable of describing the joy of being home with my family. I have longed for being at this point in my recovery and am so grateful to the Lord for bringing me this far. I have even begun riding my bike again. Today I rode about fourteen miles. I didn't ride too fast, but it felt great just to be out there.



I know one of the main reasons I am home and doing well is because of all the prayers I have been receiving. I'd like to close with a few prayer requests:

-My GVHD symptoms to clear and the ability to come off the Prednisone as
soon as possible.
-Continual GVL (Graft Versus Leukemia) effect to completely eliminate all of the CLL (Chronic Lymphocytic Leukemia) cells from my body.
-Patience in my recovery.
-Gwen, Karen, and Britt's cancer battles.

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