June 29th, 2006

Several of you have expressed the desire to become typed for stem cell donors. Others have asked if you could donate blood. The blood mobile will be at Living Hope Church tomorrow during the day and will be able to facilitate either or both of these opportunities. This is a small drive because the blood mobile can only handle a limited number of patients. As of Thursday evening there are slots open in the schedule, if tomorrow works for you. To find out open schedule times call the Living Hope office and ask for Marge or Diane at 360-944-3905. They will explain the particulars to you.

Another donor drive will be coming soon at New Heights Church. This drive will only facilitate HLA typing for stem cell / bone marrow donors for the national register. There will not be the availability to give blood. I’ll give you the specifics on this drive very soon.

At this point in my treatment, I’m getting platelets every 3-5 days and blood every 5-8 days. I know during the transplant procedure that I will be getting many transfusions to be kept alive. If you give blood it will help in replenishing the local blood bank.

Thanks again for your prayers and your gracious comments.

June 26th, 2006

I have been really learning what it means to rest in The Lord. I am pretty good at managing solutions to problems, but at this time in my process it has been increasingly evident that no humans really have a good handle on exactly what to do.

As you may remember, I’m on a study medication AMN 107 (107). The study requires a lot of continual testing. Approximately a week after starting the 107, I developed a skin rash and had to stop it for three days. The rash resolved itself and has not returned. Then a couple of weeks later, my blood protein lipace was elevated. Lipace levels indicate pancreas function. Again I was taken off the 107 for a few days while a cat scan was done and the lipace level resolved itself. It appears that both the rash and lipace level increase were caused by a combination of all of the different drugs I’ve been taking, not the 107. Since that time, I’ve been back on the 107 at a lower (half) dosage.

It has been frustrating for the past couple of weeks because my progress towards remission has been leveled off at the lower dosage. It has taken that length of time for my doctors to petition the Director of Protocol of the study to allow the dosage to be raised again. Today the approval came back so I’m starting back at a higher dose today. I am hoping that the dosage change will get me going the right way again.

My HLA high resolution typing results came back today to OHSU. That was needed for OHSU to start a search of all the international donor registries for potential donor matches for me. There will be a preliminary report as to how likely a match will be found within the next couple of days. If there are possible matches, then the process starts for the stem cell transplant.

We have been working with the National Marrow Donor Program to have two donor drives in Vancouver. Living Hope Church and New Heights Church will both be sponsoring drives in the near future. I will keep you informed of these drives as info becomes available.

If you want to learn more about becoming a donor or see if you qualify, I have set up a couple of web pages to help. Check out www.ArtsDonorInfo.blogspot.com. It also has a link to a second more personal page where my profile and updates are available.

If you want to know what specifically to pray for, pray for the two donor drives. I am praying that hundreds will decide to sign up on the National Donor Register. While I may be helped by one of those who sign up, anyone in the world who needs stem cells and/or bone marrow will have more options too.

Pray also for me. I am feeling the effects of taking a lot of different drugs. If the higher dose of 107 brings remission, I will be able to stop taking all of the stuff needed to protect me with my compromised immune system. I am also hoping for a positive report of potential donor matches.

Thank you for your thoughts, prayers and contacts. I have been truly blessed by so many loving and supporting people.

June 19th, 2006

God has been very gracious to me. Even in this huge medical whirlwind I have been feeling pretty well. It’s been 10 days since I’ve had to get a red blood transfusion. I was getting them evey 2-3 days at first. I’ve had some platelets, but the hemoglobin and hematocrit counts (red blood cells) are holding their own. The white count has been fluctuating and my neutrophils (white cells that fight off infections) keep going up and down.

My personal goal was to have my neutrophil count reach 500 before the local strawberries are gone because I love fresh strawberries. It looks like that is improbable so I’ll have to wait until next year, Lord willing. Oh well, Barbara’s mom made me the best strawberry rhubarb pie so I could get my strawberry fix.

OHSU is waiting for the results of my high resolution testing for a donor. Once they receive the results the doctor will be able to do a rapid search for possible donors in all of the worldwide registries. If there are possible matches to me those matches (up to 4-5 at a time) will be high resolution tested to see if they are an exact match. That should take 4-6 weeks.

By the time a perfect match is selected, I hope the study drug has me in total remission so that I can receive a more mild treatment to prepare me for the transplant. At the same time of my treatment the donor will be conditioned for the transplant. On the day the stem cells are taken from the donor the stem cells will be air shipped and transfused into me.

If you want more information, look at this website: www.ArtsDonorInfo.blogspot.com.

Please continue to pray for me. There are a lot of hurdles involved in this process. It is my hope that God’s will is to help me over them. Whatever happens, I am praying for God’s will to be done.

June 13th, 2006

God has been so gracious to me. I’m so thankful. I’ve had three great days in a row. But, the best news is that today is the first day that ALL my blood components have gone in the right direction. Some of the changes are small, but all in the right direction. If this trend continues, I will not have to get transfusions until the stem cell transplant process, if that is God’s plan.

In one day my absolute neutrophil count (ANC) went from 238 to 347. That is impressive since it took a month to go from <30 to 154 and two days to go from 154 to 347. When my ANC count reaches 500 I will not be considered neutropenic and can be normal again. My hemoglobin, hematacrit, and even the platelets are all slightly up, relieving the need for transfusions. ONLY GOD

A good friend has stepped up to research and possibly organize an individual donor typing drive (or drives) for me. This process will determine any possible matches in days, rather than months. At this drive there will be opportunity for people to sign up for the National Registry and to give blood. I’m hoping that people understand how, with relatively small risk and discomfort to them, they can offer a chance for life to another. John 15:12-13: My command is this: Love each other as I have loved you. Greater love has no man than this, thay he lay down his life for his friends.

I did find out that it takes from several weeks to months to get an answer from the National Registry as to whether there is an existing stem cell donor match for me or not. The process goes like this. They search their files for possible matches. Then they attempt to contact any possible matches with the news that they are the same type as someone with need. Unfortunately many donors move and don’t notify the registry with new contact info. The possible matches contacted then need to reply whether they are or not interested in still being a donor. If one or more possible matches respond with a yes, then they need to have more involved testing done because when people are initially blood typed they are tested for 5 of 6 needed matches. The fresh match also checks for changes and diseases. If the fresh testing proves an exact match, then the registry will notify OHSU that there is a match.

Thanks again for your prayers. Please continue.

June 11th, 2006

Thanks again for your prayers. Thanks also to those of you who are interested in becoming a stem cell donor. I have started researching all of the questions. By Tuesday I should have a lot more information because I have been getting help in researching the subject.

Some days, like today, are great. That is because I received a blood transfusion last night. Until the study drug 107 kicks all the way in, I will have to get transfusions of red blood cells and platelets every few days. On days right before I get transfusions I am pretty weak and can’t get much done.

I actually “lived on the edge” today and went to a part of the service at the church we are attending. Marcus (our oldest son) was leading worship, and Barbara (my wife) and Tracy (Marcus’ wife) both sang. The worship was great and I had missed being at a service. I stayed away from people as much as possible and trust that God will protect me from catching something.

This is the first weekend in a while that I haven’t ended up in the hospital. That is so great. Things seem to have settled down and with the new dose of the study drug (107), I am hopeful that my progress will be more consistent. My immune system is still very weak so I feel like the boy in a bubble. I can go outside without a mask, but I can’t touch the grass, ground, plants or anything because I may catch a fungus or bacteria that normally has no effect on people. Any time I’m in a public place I wear a mask that looks like Daffy Duck’s bill. I can have a few visitors at home as long as they are well, they haven’t been around anyone ill, they don’t touch or get close to me, and I wash carefully when they leave. The first blood cells to be built back up by the 107 will be white cells. Then I’ll be back in circulation. WOO HOO.

Through this experience I have had a great peace about my “wellbeing” (whatever God has planned). The biggest reason for that is I’m being prayed for by so many people. A huge lesson that God has been teaching me is that for me it is far easier to give than receive. Barbara and I have spent a lot of our lives giving to people. Now that dear friends are surrounding us and providing food, trips to daily blood draws and other things, it is really a humbling experience for me. Knowing that people are willing to test to be a donor for me totally blows me away. ONLY GOD.

June 7th, 2006

Here’s the latest. I went to OHSU today and had my weekly appointment regarding the experimental drug study I am doing. They do a bunch of blood tests and an EKG on these weekly visits.

There was some bad news today. I was really hoping that Linda, my sister, would be a stem cell donor match. The tests indicate that Linda’s blood type is not even close to mine. Therefore, please pray that the Red Cross will find a donor match for me. Several of you have expressed a desire to be tested for a match for me. There is only one way you can be tested to be a donor for me. You would have to go to the Red Cross and sign up for their donor program. You cannot sign up exclusively for Art Young. You would have to sign up as a donor for all people. If you are ever called by the Red Cross in the future to be a donor for someone else, you could at that time decline to be a donor for that situation. If anyone is still interested in being tested to be a donor for me, let me know and I’ll give you more information.

I still have rash, but it seems to be resolving itself slowly. The doctor was very happy with the progress, but he doesn’t have to live with the terrible itching. The rash is only on my forearms and around my knees. It used to be all over, but the majority is all gone now.

The doctor is very pleased with my response to the new drug. We discussed probable timing for my recovery. When I went to the hospital on May 12th, my bone marrow was putting out 93% leukemia (blast) cells into the blood. Now there are no blast cells in the blood. My good stem cells in my marrow are starting to produce good white cells. Good marrow always starts producing white cells first. In about two weeks my good white cell count (called ANC index) should be above 500. That is a good number because that means my immune system is no longer so weak that I have to keep taking anti-bacterial, anti-fungal and anti-viral antibiotics.

Once the white cell count is above 500, then the marrow will start putting out red cells. It takes 10-14 days to produce a red cell. Red cells are able to collect oxygen from the lungs and distribute it through the body. After about 3 weeks from now my red cell count should stabilize so that I don’t need any more blood transfusions. The final blood cells to be made are the platelets. Platelets are the blood cells that cause your blood to clot and to be the right consistency. Without sufficient platelets you will bleed internally. My platelets will hopefully normalize in a couple of weeks after the red cells stabilize.

One of the blood tests today indicated that my pancreas is not operating within limits. This means that the daily dose of the experimental drug (107) will have to be adjusted. I received this message when I returned home so I don’t have a lot of information because OHSU was closed when I called back. I’ll know more tomorrow. Please pray that this is resolved and I can get back to normal again soon.

I love you all and again thanks for your prayers.

June 3rd, 2006

Thank you for your prayers!!! They are such a source of strength and peace for me. God is such a gracious God and His presence is so comforting.

This is a very special day for me. 34 years ago today Barbara and I were married. God is so gracious to give me a partner like her. She has been such a helper and resource for me during this time. I don’t know what I would do without her.

Well I ended up back in the hospital again last night. Three days ago I was taken off of all medicines, including all antibiotics and the experiment drug (AMN 107) because of a sever skin rash. Because I am neutrapenic (very low white cell count) the doctors don’t want me out and exposed to any infections while I have no antibiotics. All the doctors are pretty sure the rash is from Alleperinal, an oral antibiotic I was taking. Apparently many people have this rash response. Yesterday I started back on the AMN 107 and they are giving me an IV broad spectrum antibiotic while I’m in the hospital.

The experimental medicine AMN 107 is working beautifully. My blood counts are coming back to what they should be slowly. The 107 has basically stopped all of the leukemic blast cells from coming out of the affected bone marrow. Now my normal stem cells need to get active and start putting out normal white cells. It will be good to get to a normal white count again so I can lead a more normal life.

I feel very strong and have a great appetite (even for hospital food). It is getting a little boring now that I’ve done this drill a couple of times. I’m trying to learn to just sit. That is very hard for me since I’ve always had projects and been so active.

I’d appreciate your prayers that the skin rash continue to resolve itself and that the 107 get me fully into remission (chronic stage of cml). My sister is being typed to see if she is a match for donor for a stem cell transplant. It is imperative that I have a donor match so I can go through a stem cell transplant. A transplant is the only viable long term cure for me. Please pray that a donor is found.

Thank You For Your Prayers!