July 10, 2004

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

"And my God will meet all your needs according to his glorious riches in Christ Jesus."
Philippians 4:19

I received my Day 56 test results this past Thursday.

CD3+ T-Cells (produce lymphocytes to attack foreign bodies). Up approx 4%.
Day 28 - 87.2%
Day 56 - 91.8%

CD33 Myloid Cells (produce white blood cells, red blood cells, platelets)
Day 28 - 100%
Day 56 - 100%

FISH Test (indicates genetic abnormities for leukemia)
Day 28 - no evidence
Day 56 - 4.8%


My doctors were pleased with my results. My engraftment is very strong which is evident by my CD3+ numbers. Seventy percent would be considered good and I am at 91.8%. The CD33 numbers of 100% still amaze me. The slight increase of 4.8% on the FISH test troubled me. The doctors could sense my concern and spent a considerable amount of time explaining to me that I should not be worried. The change is so slight and they went on to describe how Leukemia cells tend to exist in pockets within the marrow and just taking the bone marrow biopsy in a different place can cause variations in the results. The doctors also reminded me that clearing my bone marrow completely of the Leukemia takes, on average, six months. It could take a year or more for my new immune system to clear all the Leukemia.

I have developed a new rash on my lower abdomen, which the doctor suspects is GVHD (graft versus host disease). I am currently on Prednisone for an earlier case of skin GVHD, but have been tapering down from 210mg per day to a current level of 20mg. I was scheduled to be completely off Prednisone by July 20th. The new rash, however, has caused my doctor to stop the taper of my Prednisone and have me continue taking 20mg per day. If I still have the rash next Thursday, the doctors will need to determine how to proceed with treatment. Options include maintaining or increasing the Prednisone and/or PUVA light treatments. I am disappointed by the prospect of having to stay on Prednisone. It is the drug that gives me the most side effects such as muscle deterioration and difficulty sleeping. I do, however, need to expect that there will be bumps in the road as I recover. I'll do, with God's help, what is necessary to get through whatever challenges lie ahead. Fortunately, my new attending physician (team doctors rotate monthly) happens to be a GVHD expert here at the Seattle Cancer Care Alliance. Thanks God-no accident. As you can see, I also had a Cat Scan at Thursday's clinic visit. The scan was part of my Day 56 work up. The scan is routine and is done to look for any abnormalities in the lymph nodes. Finally, because my counts continue to be stable and I live close enough to Seattle, I am able to spend most of my time at home now. I pray I can continue to stay at home as I look forward to my permanent release date from SCCA in early August. Since it is not necessary for me to be in Seattle everyday, my mom was able to return to Arizona yesterday. Thank you mom for all you have done to help my family and me during the transplant. I know I will still have to spend some days in Seattle between now and August, but to quote the movie, "There is no place like home."

The support our family has received throughout my transplant experience has been simply incredible. Last night was just another example of the extraordinary love and kindness being poured out by so many people. Our home church, Our Savior Lutheran Church, held a pasta dinner/silent auction fundraiser for our family. Michelle described the night as absolutely amazing. I would just like to say thank you to everyone who was involved in the planning and preparation of the dinner/auction. I know that many people put in countless hours putting this event together. Thank you to all of you for all of your time, hard work, and support. I also would like to thank everyone who donated to the auction. I understand there were so many great items available to bid on. Finally, thank you to those who attended the auction in support of our family. We are so grateful.

I continue to thank everyone for their prayers and I wish to lift up a few specific requests:

-The effective treatment and elimination of the GVHD in my skin.

-The clearing of the Leukemia in my bone marrow.

-Pray for Gwen. She is facing a challenging battle against cancer and needs to be lifted up in prayer.

Yesterday I was starting my day off in the wrong frame of mind. I was troubled with worry and definitely wasn't experiencing a peaceful, joyful morning. After breakfast, I played a new CD that my wife's aunt and uncle gave me a few days earlier. I hadn't listened to the CD yet, and the very first song was entitled, "A Blessing in Disguise". The song is about how our troubles are a blessing in disguise. Simple chorus, but the words just kind of hit me:

A blessing in disguise, and you know
it's just a blessing in their life.
The Lord will provide, and sometimes,
it's just a blessing in disguise.


I needed a simple reminder of how God is in control of my life and of all the wonderful things He has done for me through my battle with cancer. To name a few, He has given me a much stronger faith, a deep appreciation and love for family and friends, and an opportunity to experience how much other people really care about me and my family. The journey has been amazing...a blessing in disguise. I just need to stay focused on the great things He has done for me and remember what it says in Romans 8:28 - "And we know that in all things God works for the good of those who love him, who have been called according to this purpose."

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