Sunday, July 23rd, 2006

Since the last update I spent another four days in the hospital, July 14-17. As before, I had a low grade fever that lasted three days. The doctor took blood samples for blood cultures to see if anything bad was growing in me. Once they take culture samples they won’t let you go home until the cultures come back negative, which takes 3-4 days. All the cultures were negative, but there was something going on because after all of the IV antibiotics, the fever went away and I felt much better. During the hospital stay I started Neupogen shots. Neupogen is a man made protein that stimulates bone marrow to produce more white blood cells. Since the neupogen shots started, my white cell, neutrophil, red cell, hemoglobin, hematocrit and platelet counts are all going up. My blast cell count (immature cells caused by the leukemia) is going down slowly.

The reason for the Neupogen shots is that I’ve had severely low blood counts for over two months and that is a long time to be so low. Since my marrow is not responding naturally, it needed a boost. The doctors are concerned that I will contract some sort of infection that will be difficult to treat because I have been taking antibiotics for so long. By the way Neupogen is really expensive. The first three daily shots totaled $1320.00. YIKES. I’m so thankful for a $10 co-pay on prescriptions.

I had another bone marrow biopsy done last Wednesday to see if or how much the marrow is clearing from leukemia. I should hear the results of the tests by this Wednesday. The jury is still out on whether the study drug, AMN 107, is getting me to where I need to go. The biopsy results will help determine whether or not I will be switched from the study drug to another drug.

As far as finding a stem cell donor goes, the National Marrow Donor Registry has reported some possible matches for my HLA blood type. OHSU asked for current blood samples from 6 possible donor matches. Of the 6, some are unavailable now and others are not a perfect match. There is one donor sample left to come and the results of the remaining one should be known by the 24th. OHSU has asked for current blood samples for 4 more possible donors. Those samples should be here and processed in 2-3 weeks. Apparently the asking for 4-6 donors at a time to be currently sampled will continue until either they run out of possible donors or a perfect match is found. Hopefully there is a match and the process won’t take too long.

Barbara and I are daily searching for God’s will in all of this. So far I’ve had many opportunities to talk to other patients, nurses and doctors about God. It is interesting that even the ones who do not have a personal relationship with Christ, personally know of unexplainable recoveries, healings and circumstances. I can only trust that I am doing what I am supposed to be doing and God has someone else to help all come to a saving knowledge of Jesus Christ.

Thank you so much for your prayers. They keep me going. Please pray for my stamina and attitude. On one hand I wake up each morning thanking God for every breath. On the other hand, I am getting very tired of having such low energy and strength. Also pray for a perfect donor match to be found. The better the match, the fewer issues I will have in the recovery process. Finally, pray that my bone marrow will stop producing any measurable amount of blast cells. No blast cells (remission) mean higher success rates and lower side effects when going through a stem cell transplant.

You are inspiration and strength to me. Thanks for being my friends.

July 11th, 2006

I trust everyone had a great 4th of July. It was the first year that I didn’t create some explosive devices and get with a bunch of friends to make a lot of noise. Barbara and I were amazed when we looked out our bedroom window and saw many great fireworks displays around our neighborhood. There are some fantastic fireworks now. The best part is that we had no big mess to clean up.

There is a stem cell donor drive in Vancouver at New Heights Church this weekend, the 15th and 16th. It will be open from 3:00pm-8:00pm on Saturday and 9:00am-3:00pm on Sunday. Anyone interested in what it entails or to get an appointment time can contact either Judy Howard at 360-609-0520 or howard.dj@gmail.com or Janet Baker at 360-892-5472 or janet.baker@gmail.com Click here for a map to the church. I hope to be able to be there for at least part of the drive. I’m really tired of just hanging around the house.

Well today was is a big day for me. I met with the doctor to determine whether my reaction to the study drug is good and whether I will continue with it or if we need to make a big change to something else. The study drug has been working. My platelet count has risen from getting regular transfusions at 15,000 to 103,000 in 10 days. My red cells are not as good, but improving. My white cell count is erratic, but the trend is the right way. The concerning thing is that the leukemia has not been reduced to where my bone marrow is only putting out less than 5% blast cells (immature leukemia cells). It seems that my marrow being cleared of the leukemia has reached a plateau at about 45-50%. The doctor feels that because there is good movement in the platelet counts, we should give the study drug another week. I on the other hand am ready for more improvement.

I should hear some more about finding a stem cell donor from the National Marrow Donor Registry this Friday. There were some potential donors, but current blood samples needed to be drawn from them. Hopefully one or more agreed to be tested. I’ll keep you informed.

A scripture that I have cherished of late is Isaiah 57:15:

”For this is what the high and lofty one says – He who lives forever, whose name is Holy. I live in a high and holy place, but also with him who is contrite and lowly in spirit, to revive the spirit of the lowly and to revive the heart of the contrite.”

To think that the same God who created and controls the universe has come down from His place of supreme power and glory to be with me in my need is incredible, incredible yet I know without a doubt that it is true.

Help For Donor Drive

Many of you have mentioned to me that you would like to help, if there was an opportunity. Well there is a great opportunity. On July 15-16 there will be a stem cell/bone marrow donor drive at New Heights where people can sign up for the National Donor Registry. I will have access to these donors as well as anyone in the world that needs a transplant. It is exciting to think that we may be able to save a life or lives. That is what following Jesus is all about.

To sign up for something in particular or just be available for whatever, here are your contact points.

Judy Howard: howard.dj@gmail.com; 360-609-0520
Janet Baker: janet.baker@gmail.com; 360-892-5472

Some of the needs:

1. This weekend, July 8-9, at all New Heights services there will be a table in the foyer where people can get donor information, pick up pre-screening questions, and pick up a registration form to complete before they come to the drive. There is a need for people at the booth. Don’t worry about answering questions, the materials are self explanatory. All you need to do is look friendly and smile a lot.

2. The following weekend, July 15-16, at all New Heights services there will also be a table in the foyer where people can get information, pick up pre-screening questions, and pick up a registration form so they can complete it before they go to the drive. Again, there is a need for people at the booth.

3. The actual donor drive hours will be Saturday 15th at 3pm-8pm and Sunday 9am-2pm at the New Heights Clinic. The clinic is on the Southwest corner of the property. During those times we will need people to help direct and greet people going to the clinic, help with snacks for the donors, help collect papers and do general cleanup. You can sign up for a shift directly before or after one of the normal worship times and make one trip to the church to help and be helped.

4. There will be many other opportunities to help also. When you contact Judy or Janet, they will have a more complete list.

Thanks for your willingness to help. It is much appreciated.