June 10, 2004

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


I've had the past two days completely off from having to go the clinic. I've almost not known what to do with myself, considering I'm usually here at SCCA on a daily basis to at least have my blood checked. As I get further along in my recovery, and as long as things are going smoothly, I should be getting more days off from the clinic, which will be great.

Enjoyed this past Tuesday with my buddy Brad who came up and spent the day with me. We just enjoyed hanging out, took a long walk, and he got my bike cleaned up and set up on my trainer so I can just go out on the deck of my apartment and ride my bike for exercise. Daily exercise is critical for an improved recovery and to counteract all the muscle atrophy, which can occur during this transplant process. Back when I had the bad fever I dropped 15 pounds. Even though I am doing really well now and maintaining weight, I won't gain much back the weight lost earlier until I'm off drugs such as Prednisone, which eats up muscle tissue. Prednisone is necessary, however, to maintain GVHD (Graft Versus Host Disease). Later in the evening my friends the Breahms and the Bartels came up to visit. We had a great time talking together. Tuesday was definitely a fun day.

Tuesday night was a different story-it was a tough one. I woke up around 11pm, after only an hour or so sleep and my joints in my legs were in excruciating pain. I wasn't sure what was wrong, but it lasted all night and I basically didn't sleep at all, which made for a tough day on Wednesday. I called the clinic the next day and I guess this happens sometimes when a patient is going through a Prednisone Taper (gradual reduction of drug I take). Thankfully, I haven't had any more pain since then.



Thursday (today) it was back to the clinic at 8:45am. As always, I started off at blood draw. Greeted by Romiro, who always has a great smile for me Monday through Friday, I headed back and gave what seemed like twenty test tubes (I hope I'm exaggerating-but it was a lot.) of blood for all the tests they needed to run today and by 9:00am I was upstairs to have an infusion of IG (Immuno-Globin Protein). IG is a protein produced in everyone, which is necessary to fight infections. Transplant patients IG levels always drop. So it is necessary to infuse it back in to keep the levels normal. Today was my first IG infusion, but I will probably need a couple more in the months ahead. The infusion takes about four to five hours. Special thanks to Nurse Tiff (pictured below in blue) for being so great all day during the IG infusion.


Since I was tied up with the infusion, all my other appointments came right to me. My nutritionist Kerry (seated left of Nurse Diane) let me know I am exceeding all my nutrition levels through how I am eating. Anyone who knows me knows that eating is one of my major strengths! I strive to perform highly in this area.

The best part of the day came towards the end as I met with my clinic team. After the examining me, Dr. Coleman went over the final results of my Day 28th Bone Marrow. I have been so anxious about this appointment, for these results tell the most about how well the transplant is going, Only problem, the news today was so good that I barely have the emotion to write further.

"Shouts of joy and victory resound in the tents of the righteous; The Lord's right hand has done mighty things!" Psalm 118:15

I have to get a little scientific here as I briefly describe the test resuslts, so here goes:

*My CD3+ T-Cells which produce lymphocytes that attack foreign bodies in body. Goal was 70% donor cells in my marrow. I'm at 87.2%! Exceeded by 17.2%!

*My CD33 Myloid Cells which produce white blood cells, red blood cells, platelets, and other bacteria fight cells. Goal 70-80%. I'm at 100%. Amazing!

*FISH Test done on April 5th. I had 53% genetic abnormities for leukemia. Current abnormalities detected - none. Meaning the most recent tests are only detecting my new, healthy marrow cells. Incredible!

As you can see, the results completely exceeded expectations. I couldn't have received better news. Does this mean my Leukemia is completely gone?
Not yet. Eventually, a complete and full take over of my new donor's immune system will completely eradicating the Leukemia is through an immune response and this process still takes a year or more. However, the above test results DO show that my new donor's immune system is achieving an excellent engraftment into my body and things are going in the best direction possible to achieve a complete cure of my CLL. It's truly a miracle so far!

I do not possess the words to describe my emotions and joy right now. I am so incredibly grateful and thankful to the doctors, my donor, and most of all to my awesome God.



Thanks to Tim, Denise, my sister, my mom, and my beautiful wife, Michelle, for being with me today. What a great, great news we celebrated today. Michelle and I are so filled with joy and thankfulness for the incredible miracle the Lord is working. To Him be the Glory!

"You have made known to me the path of life; you will fill me with joy in your presence." Psalm 16:11

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