Art's CML Updates

Celebrating Art's Life

2007-12-04T10:05:00.000-08:00

Dear family and friends of our beloved Art,

On December 2, 2007 at 2:45 p.m. Art went to be with Jesus. A Scripture Art often thought of these last few months was in Hebrews 11:10 where it says, “He was looking forward to the city with foundations whose architect and builder is God.” Art did not look at his passing from this earth as death but rather a transition to that beautiful city to be forever with our Great and awesome God, the One who gave him life!

Art loved you all so very much. He showed his love of God by serving others, and loving his family. Art loved life and saw many, many, many good days.

Please join us in celebrating Art’s life at his memorial service Friday December 7, 2007 at 1:00 p.m. The service will be at New Heights Church. Click here for directions or you can call the church at 360-694-4985.

If you would like to show your appreciation for Art’s life and encourage the family you could make a donation instead of sending flowers to one of the following organizations:

Open House Ministries
PO BOX 242
Vancouver, WA 98666

Click here for their contact page.

Please enclose a note to let them know that it is in memory of Art Young.

OHSU Foundation
1121 SW Salmon Street Suite 200
Portland OR 97205-2021

Click here for donation instructions and their phone number.

Please use this form and indicate to have the funds applied to the Bone Marrow Transplant Clinic in memory of Art Young. OHSU will send me notification of your donation should you choose to include my address (please leave a comment if you need my address). I would so love to thank you.

With all of our fondest regards,
Barbara, Marcus, Tracy, Benjamin, Terra, Brett, Janice, and Elijah

Grappling with My End of Life Decision

2007-12-01T18:33:00.000-08:00

Over the years many people have asked me to formulate my opinions on how my experiences have changed. It’s very ironic that my first paper I wrote was on grappling with end of life decision making. In fact, I had just finished this paper within 15 minutes of the bad news. Below is that paper.

GRAPPLING WITH MY END OF LIFE DECISION

INTRO
Several people wanted to hear more about how my journey has impacted me. I realize that this won’t be for every one. I also realize that the list of names this goes to is very diverse. You are in quite different places spiritually, life station, personal situation and with differing interest levels. Please feel free to discard this. I don’t have a lot of ego in it. It is more or less an outline designed to give scriptural clarification and perspective. If you come across a statement where you have wisdom for me, I’ll gladly take it. If I can help unlock more for you, let me know. No promises. I’m certainly not the Bible Answer Man.

STARTING OUT
For a long time I had deliberated on what I have believed about the proper time and circumstances surrounding the idea of when are we sustaining life versus prolonging death; when do I say enough is enough if the decision needs to be made. In my experience most people approached the decision from the same direction as I once did. We try to make up rules for possible situations and control decisions as they come up.

This is a real screwed up way to make this decision. We take control away from God who has ultimate wisdom and place that responsibility on ourselves. My thinking needed a fresh paradigm shift. I first decided that God leads by perfect love, grace and principles, not rules, laws or circumstances. Getting the correct perspective is so important when embarking on making an important decision or formulating life directions.

GETTING A CORRECT BASIS
God and the work of the Lord Jesus Christ are key and central to all life decisions. This is where it must begin. There are so many facts and truths to study. I will list some things pertinent to my decision making process on this subject. So much could be said but it will be up to you and your journey to fill in more details. Each truth needs to be studied deeply. Because of my long and arduous journey with illness I now have a much different perspective than I had a few years ago.

TRUTHS THAT ARE FOUNDATIONAL TO LIFE
God loves each of us perfectly and ultimately. His love and presence are forever ours when we trust Him.

God is the giver and sustainer of life. He loves life, both physical and spiritual.

God leads my life by love and relationship; love from Him just for me and love from Him to give in my relationships with others.

God is the final and supreme source of wisdom and truth that is reflected in His perfect plan for each of our lives. He makes no mistakes.

Our success is not measured by all we can do or by all that we have acquired. (The one with the most toys will still die and he won’t take any of them with him). It is whose lives we impact in a positive way.

God’s strength is perfected through my weakness. He gives me the strength to say “I can do this” with each new day.

God has created us individual and unique beings.

IN CONCLUSION
It is very strange that we cling to life here on earth when reality is that we will be going to a far greater place. Why then do we so fiercely resist the end of life process and fear death? Just as we are uniquely created, so will each of our end of life journeys be unique. Some of us will die quickly while others of us may linger in a long process. Some will have opportunities to question end of life options and others will have none. The most important question I have asked myself and will continue to ask myself in regards to this issue is, "God are you finished with me yet here on earth? Are you telling me that it is time to stop attempts at sustaining life and allow life’s natural progression? Is this the time I am to cross over the thin line of sustaining life or prolonging death?”

December 1, 2007

2007-12-01T17:42:00.000-08:00

This is Benjamin Young writing on behalf of Art. I am not the superb word crafter that my father is, so I apologize before hand. He really wanted to type this to you himself, but it is not a possibility. So here is the latest.

Art went to the ER at Southwest Washington Medical Center Friday November 30th. He was having trouble with low energy and shortness of breath. They took a new CAT scan of his chest to see how the masses in his lungs were affecting his breathing. The ER doctor said that as far as he could tell there was nothing new in the scan, but because Art did not have the energy to get up and walk around they admitted him to the Kaiser Sunnyside hospital in room 111.

The doctors at Sunnyside reviewed the new CAT scan against the scan done before the biopsy. The main mass in his lungs was around .75 inches in the first scan, while the scan taken a few days later showed the main mass was around 3.5 inches as well as several new masses on the other lung. This confirms that it is fast growing sarcoma and he does not have more than a few days to live.

He is currently on the highest subsidy of oxygen available. He was in a lot of pain although now the medications seem to be keeping the pain under good control. He is lucid when he is awake, but the pain medicine seems to keep him between sleeping and waking a lot.

If any of you would like to visit, please call either me at 360-609-5179 or Marcus at 360-607-4714 before hand. We have a very small room and are trying to schedule out the different visitors so they are not all coming at the same time. Please refrain from asking Barbara questions about Art’s health as it is difficult for her to continue repeating the information. My brother and I will try to answer calls as best as we can.

I want to thank you all for the support and prayers that you have provided for Art as well as our family through this difficult time. If you could continue praying for us we would really appreciate it. It will be difficult for our family to say goodbye to such an amazing man. He is a great husband, father, and friend.

It is about now that my father would start saying,

You should cheer up, this goodbye is not forever. You are all just jealous because I am going to get to heaven before you. But don’t worry; someday I will get to see you again.
~ Art Young

Written by: Ben Young

November 28, 2007

2007-11-28T20:56:00.000-08:00

Kaiser released me from the hospital last night. I am very stable, all my meds are taken orally, and the lung biopsy site is doing very well. The largest challenge is that there is substantial pain at and around the biopsy site.

The plan now is that a brain biopsy could easily not be needed. I will call on Thursday evening to get results of the several tests from the lung biopsy. I am being pre admitted into Kaiser early Friday morning. If any biopsy is needed, then we’re all set up. If no biopsy is needed the appointment will be canceled. This plan provides the fasted way to provide the best care.

Barbara, many friends, and I are continuing to pray for clarity for the medical staff, God’s will and my healing.

I have been wrestling with some important truths. I’ll be sharing something when my situation settles down.

November 27, 2007

2007-11-27T11:30:00.000-08:00

The lung biopsy is completed. There is no evidence of pneumothorax (air leaking into the lung). There is also no evidence of bleeding in the lung. Both of these outcomes are definitely good things.

The surgeon removed several good pieces of tissue for analysis. There will be some samples for pathology to research possible cancers and abnormalities. Blood cultures are being worked up to determine if there are any infections present. Several of the tests will take 3 days to complete so we will have to wait until Friday for diagnosis.

I’m going to rest now. The doctor went in through the back, over the scapula (shoulder blade) then immediately under a rim. That area is getting a little sore.

November 26,2007

2007-11-26T17:28:00.000-08:00

We thought a biopsy on the mass in my lung would be performed today but it didn’t happen. So far OHSU sent all their x-ray, MRI, CT SCAN, and CAT SCAN films to KAISER from the past several months. The Kaiser and OHSU doctors had a conference to set a course of action.

I will stop eating or drinking at midnight tonight. At four am I will receive platelets, either one or two bags depending upon the level. At six o’clock am the platelet counts will be sent to the lab to verify a high enough platelet level so I can get the biopsy done without danger of internal bleeding. If all goes as planned, I should be wheeled into the operating room around 8:30 am on the 27th.

The biopsy tomorrow will be done on a lung. I will be constantly hooked up to a CT scan that will guide the surgeon the whole way. He can see direction, depth, angle, biopsy extraction point and all other parameters. We will not receive any biopsy test results for 2-4 days.

If there are no definitive answers or certain results as to what is happening with the lung biopsy, then a biopsy on one of the masses in the brain will be performed the day after.

It hasn’t been fun waiting because the time kept slipping. Now we have a plan that is thoughtful and seems accurately. Being here won't be fun but at least we have a good idea of the process.

There are several prayer needs and several specific times to pray. Barbara is filled with emotion and concern too. We appreciate your support.

Well my dinner is here so I better eat something before I’m cut off till mid morning or later.

We love you guys very much.

November 25, 2007

2007-11-25T23:16:00.000-08:00

Well here we go again. Some new developments have come to light. About a week ago I was starting to have problems with reading. I was reading scriptures to Barbara and it became hard to formulate words and thoughts. There was a component of needing reading glasses.

However, there was also a component where my brain wasn’t processing words properly. It was getting worse and more frustrating. I was working on our accounting books and numbers were even more bizarre than words. For example, this update is taking a long time to compose, write and spellcheck. If something is grammatically incorrect, I’ve been trying really hard.

Last Wednesday OHSU gave me an eye exam. The results showed that I am developing premature cataracts. The cataracts are most likely due to chemotherapy and radiation treatments. With proper glasses and bright lighting, cataract surgery will be about 1 year away.

I couldn’t imagine the whole problem was eyesight so we went to the urgency clinic on Saturday to get a medical doctor’s opinion. An MRI was performed and revealed 3 masses in my brain. The masses are placing some pressure that is probably causing my brain to exhibit erratic thought processing.

I was immediately admitted into Kaiser Sunnyside. They have done a lot of additional testing. Beside the 3 masses in my brain there is an additional mass in one of my lungs. Finding the mass in the lung will allow doing a biopsy in the lung and not in my brain. Brain biopsies are certainly more troublesome than lung biopsies.

The most likely cause of the masses is an infection, probable a fungal infection. The theory is that during my last chemotherapy I did have a bout with fungal pneumonia. All of the most potent meds were used to fight off the infection. Nothing seemed to work until my natural immune system started coming back. As soon as my immune system kicked in, my lungs cleared right out. There is some discussion that the infection in the lungs has been hanging around at a low level. The infection could have spread to the brain.

While an infection is the most likely causes of the masses, there are a couple of other possibilities. The masses could be a totally different type of cancer. My body has been through a lot of trauma and more chemicals than you can ever imagine. If it is a new type of cancer, then it will be treated not as CML.

Another possibility for the masses is that leukemia cells can congregate in the brain. The chemotherapy treatment is partially blocked in the brain as a defense mechanism. This would seem unlikely since my treatment is molecular, not chemical.

As you can imagine, Barbara and I are reeling from the news. The next couple of days will greatly clarify things. We, of course, solicit your prayers. Pray for clarity of God’s will and that we listen to only His.

Thanks for your support and allowing us to share life with all of you.

November 15, 2007

2007-11-15T08:40:00.000-08:00

God is blessing me ever day. I am slowly getting stronger. My legs are still pretty weak, but improving. Mt balance is slowly getting better. If I’m very diligent and intentional I can walk without a cane or walker on a flat and open floor. However, I’ve fallen a few times when I am not paying extreme attention to walking. Fortunately there have only been minor bumps and bruises.

It is difficult to find the narrow line where I am trying to progress but not overachieve. It is hard to see improvement happening daily. When we think in terms of weeks and not days, then improvement can be seen.

My blood counts are holding well. I haven’t had any blood or platelet transfusions for 3 weeks. That is a definite a great blessing. We are now only going to get labs done once a week. Barbara and I both appreciate fewer trips to OHSU.

I have been tracking mileage for medical appointments to turn in for a tax deduction. From January 1, 2007 until October 31, 2007 (10 months) we have driven 5876 miles to OHSU or Kaiser. That is the same as driving from our house to Miami, Florida and back to Yellowstone Park. What is even grimmer is that 70% or more of the trips were in Portland rush hour traffic.

The level of leukemia has been consistent since finishing the last chemotherapy. I am still in remission without any blast (aggressive) cells detected. The best would be no evidence of leukemia but my test results are the second best. Future treatment plans, if any, will only happen if there is an actual mutation found. We are on a wait and see mode right now.

I need to go with Barbara so I’ll sign off for now. You all have been such a support to Barbara and me. Thank you so much.

November 2, 2007

2007-11-02T17:24:00.000-07:00

I hope you all had a pleasant Halloween. We had about 120 kids come to our house by 9:00pm. That’s when we turned out the lights and went upstairs to get ready for the night. There weren’t any pumpkins smashed in the street in the neighborhood and no noticeable vandalism so that was good.

Things are progressing well for me, very slowly but well. Barbara and I have been able to get out of the house more frequently. We even were able to go to church and to some friends’ houses. Those are great times and we feel blessed that we can do them. We both like our house a lot, but not 24-7. I actually was able to go into the garage and start cleaning it up. Everything takes so long because of my limited mobility that it is frustrating, but I appreciate being able to do anything at all.

I still am using a walker for the most part. If I’m only going a few steps I can use my cane. However I am still a little shaky for the cane yet. I have fallen a couple of times so far. Fortunately they were more of a slump to the floor and not a big crash so there were no bumps or bruises.

My legs are still pretty weak. When my knees bend too far (about half way) they buckle from lack of strength. I am able to go up and down the stairs alone now very slowly. Before last week Barbara had to give me a little push on the rear to get me up them.

My hemoglobin and hematocrit blood levels are starting to hold their own so we’re hoping there will be no more red blood transfusions. My platelets are still not maintaining, but are losing ground more slowly. Platelets are typically the last blood product to raise levels so they apparently need more time.

We have been going to the OHSU clinic twice a week because of the frequency of needed transfusions. We are now transitioning to once a week to the clinic. This is a real blessing not to have to go up to OHSU as often. Traffic is always so bad, no matter what time of day we go. When I needed a transfusion it normally takes 5-8 hours of sitting in a chair or lying in a bed that is way too short.

The leukemia is still at a very low level. The test results have not been able to show any specific mutations at all. There is a minute positive BCR-ABL protein detected, but no specific mutated cells. That is good news, but the best news would be to have negative BCR-ABL results. That is what we are hoping for and praying for to happen over time.

Barbara and I are reading the Bible together daily. We read In Psalms, Proverbs and a portion of a New Testament book. It has been very fulfilling to me to read scripture with my Sweetie. It is a great way to connect because we are both wrestling with “what’s next” and “where does God want us to be and what does He want us to do”? Barbara has great insights and our discussions are helpful in coping with living one day at a time.

We both suffer with being able to rest in the Lord. We want to help Him out. Instead of resting, our human side wants to be in control and know what is happening now and what will happen in the future. Please pray that we will rest in Him.

I highly recommend those of you married types to read together. The experience is drawing us closer together spiritually and emotionally.

October 20, 2007

2007-10-20T11:10:00.000-07:00

I’ve been home for 2 weeks now and gaining strength very slowly, but steadily. I’ve had a couple bouts with GvHD (I think). No one is sure but my stomach objected strongly to some new foods on both occasions. I’m still trying to figure out how to progress with food variety and not wake the sleeping giant.

Barbara and I are both trying to figure out what in life is next for us. God hasn’t laid out His plan distinctly to either of us so we are at a loss of how to plan. Since we want to be in God’s will, we are trying to be effective each day (in our limitations), yet be ready to yield to God’s direction. We are really trying to live one day at a time.

A good friend asked me if visualizing where I will be in the future helps to plan a strategy on how to get there. He was thinking as a runner who is training to run a marathon. Since the future is not mine to plan, what do I visualize?

Today when Barbara and I were reading together, a scripture helped me to express how I feel about this.

Proverbs 20:24 - A man’s steps are directed by the LORD,
How then can anyone understand his own way?

We actually have gotten out of the house a few times to places where we feel the germ count is not too great. We started feeling like we were under house arrest when my strength became such that I could get out of the car and walk a good distance with my walker. The walls of our family room were becoming far too familiar.

As my marrow has been rebuilding, the BCR-ABL level in my blood has been increasing ever so slightly. This blood protein is the barometer of how many leukemia cells are present. The doctor expected the level to rise slightly in the beginning as the marrow rebuilt until the donor cells became established enough to kill the leukemia cells. However, a rising BCR-ABL level can also mean the leukemia is coming back.

Last Wednesday I received the latest BCR-ABL level test results. The level was less than half of the previous test. The level reduction, along with the 2 bouts of GvHD, could easily mean that the donor cells are becoming active and strong and that they are combating the leukemia. We will have to wait until the next test report comes back to see any trend.

I am convinced that the lower BCR-ABL level is due to so many of you praying for God to be glorified by healing me of this disease. I have to admit that I was expecting the results to show a rise in the level again. My lack of faith was covered by your prayers. Thanks!!

October 9, 2007

2007-10-09T18:04:00.000-07:00

I came home last Friday and it was wonderful. My balance is impaired and my strength is still low, but I am managing to climb the stairs and everyday getting around with a walker. I’ve been getting used to managing my own time, instead of someone else managing me. My greatest hurdle now is whether the leukemia comes back. Only God knows the answer to my future. It’s increasing evident the medical community doesn’t.

Barbara and I have been reading a book called “90 Minutes in Heaven” by Don Piper. I really related to the thoughts and experience of the author. I do not claim to have gone through the intense pain he experienced, but I have experienced the depression, feelings of helplessness, loneliness and some degree of pain and suffering.

In the book Don Piper is pronounced clinically dead for 90 minutes from a car accident and experiences heaven. Through prayer he is brought back to life. The book is his journey to heaven and dealing with being brought back from paradise. It’s an easy read and you can get it at any Christian book store. It is apparently out of stock regularly due to its popularity so you may have to order it.

I have been thinking about the fact that prayer brought Don Piper back to life. Will God answer your prayers for my healing? We will find out as each day unfolds. God knows best where He wants me to be and I am good with that.

It won’t be long until I can go out into public (crowds). I can’t wait to get back to church and worship with my friends. Who knows, I may come and visit you.

October 3, 2007

2007-10-03T21:32:00.000-07:00

Well its official, I’M GOING HOME FRIDAY. The occupational and physical therapists agree that I have progressed enough to safely go home. I will be going home this Friday morning after being away for over 2 months, actually 3 months my including June hospital stay.

My strength is improving daily. I have been walking 150 feet to the therapy room, doing a session of therapy and walking 150 feet back to my room. This may not seem like much, but I was unable to even stand when I got here three weeks ago. I have to use a walker but I am pushing it around more and leaning on it less every day. My quads are still weak so I still cannot get out of lower height chairs. A good friend had a lift chair and has provided it for me to use at home. That will be most helpful.

One of the main goals of therapy was my ability to go up and down stairs. Yesterday I went up 27 stairs (3 sets of 9). I am anxious to see how I go up the 14 steps in our house. I’ll need to navigate our stairs at least twice a day, down in the morning and up at night.

It is such a blessing for me to be able to go home. God has listened to your prayers. Thank you all for praying. There are many things I look forward to by being home. The first is that it will be a huge load taken off of Barbara. She has been such a loving, faithful and giving wife. When home, she won’t have the stress of getting to where I am and staying there for hours. Now she can live a more normal life.

Secondly, Barbara and I went over a shopping list that will allow us to make some great dishes to eat. We enjoy cooking and it will be wonderful making dishes I can eat with my GvHD, yet are tasty and have more variety. I could go on and on with things I am looking forward to by being home. They all have to do with a greater sense of normalcy.

I do not know what my new normal will be. How much more will I improve? How long will rehabilitation take? Where will I end up physically? The biggest question we have is will the leukemia stay controlled? These questions can only be answered by time. All we can know is that God knows and His plan is best.

September 29, 2007

2007-10-01T08:45:00.000-07:00

I am still at the rehab center and improving every day. I talked them into having physical therapy twice a day instead of once a day. That has made a real difference in my progression. When I got here I couldn’t walk more than a few feet with the help of someone and a walker. Now I’m walking 150 feet to therapy with a walker, doing therapy and walking back. Stairs are a hard exercise to do. Yesterday I went up a flight of 9 steps twice.

I’m thinking they are going to kick me out of here in less than a week. I can get out of a taller chair with arm rests ok. If the chair is too low I’m stuck without help. As I progress, the chair height I can get out of gets lower. This has been a slow process.

I don’t know how long it will be before I can get out of the low couch and chairs we have at home. We may need to buy a tall chair for me for a while. We will make it work. I’m so anxious to get home since its been 2 months since I was last there. It is surrealistic to me that I may be going there soon.

All my labs, including the PCR ABL test, indicate the leukemia is all but gone. It’s a waiting game to see if things change and the leukemia comes back. There are a lot of you praying that it won’t. I appreciate your prayers more than you will ever know.

I received an email the other day that really struck me. It was about a teacher who had asked her class to write down the Seven Wonders of the World. One girl sat quietly in the back so the teacher went to see if she needed help. When asked how she was doing, the girl replied that she thought she was doing well but there were so many it was hard to limit. On her paper the teacher saw the following.

to see

to hear

to smell

to touch

to feel

to laugh

to love

The greatest wonders of the world are not man made they are gifts we were created with.

September 22, 2007

2007-09-22T20:44:00.000-07:00

I’ve been at the rehab center for about 10 days now and am getting stronger every day. My appetite is back with a vengeance. I am still on a low bacteria, GvHD diet so my food is mostly protein, and some carbs. The cooking staff has been very accommodating to give me LOTS of what I need. I’ll eat breakfast, a morning snack, full lunch, an afternoon snack, dinner, evening snack and a snack in the middle of the night. Snacks are generally half a sandwich and bowl of soup.

With all of this I am not gaining weight. My gut lining is still healing so my absorption isn’t what it should be. All of the nutrition I’m getting seems to go into rebuilding and healing.

At first I was really disappointed in the slow progress of physical therapy. Now therapy is starting to show results. For example, I couldn’t stand up out of my wheel chair, but today I did it. My quads are starting to get stronger along with my other muscles.

I don’t have a clue on how long I’ll be here now. It could be another week or a month. Before I go home I have to be able to shower, go to the bathroom, climb our stairs, and do all other daily functions by my self. The therapy department will assess our home conditions and ensure I’m ready to be in my environment. There are 14 steps between our downstairs and upstairs and climbing 14 steps is the most difficult task for me to complete.

I’m certainly in a place where I’m getting better at a rapid rate. Is it God, God and the meds, temporary, long term? Barbara and I are certainly learning to live one day at a time and wait on the Lord to see what that day brings.

September 11, 2007

2007-09-11T17:24:00.000-07:00

It is surreal to think that today is the 6th anniversary of the attack on our country. On one hand it seems like the event happened just a short time ago and yet so much has happened in six years the event seems like distant history. I can easily go back and see the second building being hit by the plane while glued to the TV that morning...

I’m being moved to a rehab facility by Vancouver Clinic tomorrow. The plan is to build my strength back up to be able to go home in 7-10 days with the strength needed to get up our stairs and just do life. The rehab staff will work with me for two 45-50 minute sessions a day. One session is direct muscle strengthening and the other will be more occupational therapy (whatever that is).

I’ve been taken off VPN (IV nutrition) now so I have to be eating a lot to regain my proteins and albumen without the help. Again I am on a diet that is low bacteria, fat, fiber and complex carbohydrates. No fresh fruit, fresh vegetables or dairy products.

The medical team here is again astounded by my speed of recovery. Either they are impressed or being supportive. I don’t know which.

What a wild ride!!!! I am so glad God is in control and that I’m not Him. Each day I have to remember 3 things to keep my proper focus on reality. I stole these from a great little book called “Encouragement for Life”, by Charles Swindoll. They are hard to really comprehend but daily I’m trying.

I am only Human. I am finite and fallible.

I don’t understand why I’m on this journey and I may never understand while on this earth.

I cannot change my situation. It is a time to trust that God is in control, that He makes no mistakes and that He is totally involved in the process and its outcome.

One thing I am sure of is that your prayers are affecting my life. Thank you so much for holding my hand through this journey. Where will we end up?

September 6, 2007

2007-09-06T21:18:00.000-07:00

Today is a far better day than the last update. My white counts are up again. That always helps every aspect of my health.

Now that the counts are up it appears that the two masses in my lungs are reducing. With all of there big guns of antibiotics and fungal treatments, the masses were not moving or reducing.

All of the 4 skin biopsies displayed GvHD. The large spots are softening and look under control.

My central line had to be removed with incredible pain. There was definitely abyss in the channel. They left the channel open and stuffed the channel used a rope type packing to allow the channel to heal from the inside out. It will be good to have that channel heal.

We are waiting to see what is happening with the lungs and also my physical strength to return home. There are challenges for going home. All bathing and sleeping facilities are upstairs. We will either need to rent equipment to stay downstairs or get strong enough to get upstairs. We’re working hard on getting upstairs with physical therapy.

Even though my faith wavered, The Lord was always present.

August 26, 2007

2007-08-26T13:28:00.000-07:00

An incredible amount of medical “stuff” has happened in the last three days. I had a chest x-ray and a CT scan of my chest that has revealed areas in my upper lungs that could be pneumonia. They did a scope of my lungs to help determine further what might be happening.

While they had the scope in my lungs they pushed a cup of saline solution in each lung and then sucked as much out as they could – it is called lavage. The hope with the lavage is to suck out something that will give them an indication of what they are dealing with. As of now they are treating to cover everything it may be until they find out specifically what to treat.

Unfortunately on Friday it became necessary to remove my central line where all IV medication and transfusions were given. The line and area around it has become infected and until results show what is causing this infection I will not be able to have a new line placed. This means that all infusions must come through temporary lines in the back of my hand which need to be replaced every three to four days.

I can’t have a permanent PICC line put in until the infection in my blood is gone. Because the remove of my central line has not relieved my sensitivity and redness the surgeons are coming in to see if they need to cut small channels next to the areas and flush it out.

I have been developing red spots on my skin and a red rash around my elbows so the biopsy team came and took three biopsies two shallow and one deep. It wasn’t that big of a deal because they numbed the area first. The thought is that these areas indicate possible infection related to the same in the blood. Everyone here at OHSU is working diligently to help me.

I would like to recommend a good book. The title is HEAVEN written by Randy Alcorn. Because of my situation I have been more curious about what is heaven like and what will I look like there, and what I am going to do there and who am I going to do it with. I have not finished the book but Randy has a great way of looking at Scripture with different references to make his points.

For example he brings out the point that Adam and Eve were God creation to live for an eternity. But because they chose not follow God’s plan for mankind their bodies began to age and eventually die. It only makes sense that we will have physical bodies because that was God’s original plan for mankind. However, there are some of his ideas which use scripture but are his own interpretation. On those you need to pray God will give you discernment and fill in your own blanks.

If you have questions about where you will personally spend eternity e-mail me back and we can talk about it.

I thank you all for your kind words and especially for your prayers. You are warriors.

August 21, 2007

2007-08-21T17:48:00.000-07:00

Today is August 21, 2007. I’ve been here in OHSU since August 2nd. The first week was a week of waiting, instead of getting chemo as previously planned. Looking back I’m glad they waited a week because I was really weak and needed the time to rebuild.

I started chemo the second week after all of the oncology doctors met to decide how I should be treated. I was planning on a leukocyte transplant from the same donor as the first transplant. However, the reason for the second transplant is to add to the donor immune system. This would result in an elevated dose of Graft verses Host Disease (GvHD) and also elevate the Graft verses Leukemia Effect. Doctors monitor the GvHD which is an indicator of how much Graft verses Leukemia Effect is present.

When I came here on the 2nd the doctors performed a scope and biopsies of my stomach. The biopsies showed I had a good case of GvHD. By giving me the second transplant there is a concern that I will have too much GvHD and that could be life threatening. The donor is on call if I need the transplant, but as for now I don’t need it.

I have been receiving TPN, a type of IV nutrition. It really helps. I’ve been able to walk 2 laps through the 5C wing. That is a huge improvement over where I was. I feel a lot stronger and my outlook has improved a great deal too.

I will probably be here another two weeks, until my blood counts rise after the chemo. I could go home earlier but Barbara would have to bring me here every day or two during rush hour. There is also the possibility of infections.

Thanks for your prayers.

August 11, 2007

2007-08-11T11:09:00.000-07:00

This is Barbara for Art. Art is doing as well as can be for now and we are working together to send this to you as he is most comfortable in a reclining position. We are back at OHSU and today is day four of a five day round of Chemo. Originally the plan was to have this conditioning chemo and within days have a second transplant of the donor's white cells (leukocytes).

The object of the transplant was to heighten the level of GvHD. However, when he entered to hospital this time they did a biopsy on his stomach and the results showed that there is already GvH present. To give him the transplant now could elevate the GvH to a fatal level. So the consensus of his medical team was that they would continue with the conditioning chemo and save the collection from the donor for a later time. The reason they want GvHD is that it is a measuring tool for the level of graft versus leukemia affect.

Because Art was so ill when he came into the hospital he became depressed especially when it took so many days to come up with an alternate plan. It’s hard for both of us at this time since we were expecting to be so much further along than we are today. Art is very weak and it will take many days just to have the strength to get upstairs now when we get back home. There is no set date as to when he will be coming home but we are hoping for a day next week.

Hope you are all having a wonderful summer! It is certainly going by fast for us. Please remember to take the time to build memories with your family and friends – those who matter most and will always remember your name. Thanks for your prayers and kind words of encouragement.

July 29, 2007

2007-07-29T19:24:00.000-07:00

Its day +178 today. I don’t know how much longer I will use this counting system. When I get my second transplant, it will be at day +196 after the first transplant. However, I’m not sure whether I’ll be counting from the second transplant or the first. I hope the count starts over. My fingers and toes are getting sore from all of the counting.

Tomorrow is my last visit to the clinic before being admitted to the hospital on Thursday to start the conditioning chemo and transplant procedure. I’ll start my chemo on Thursday and the transplant is scheduled on August 16th, 14 days after the chemo starts. My donor is being worked up currently for collection on August 14-15.

I get less and less excited about going to the hospital every time. This time is no different. I am weaker each time I go in (and get out). This time is no different. This morning I weighed 173 pounds. I can’t remember when I weighed so little, probably in the 5th grade. A good weight for me is about 230 so I’m down quite a bit from normal.

The reason for the weight loss is probably that the multiple rounds of chemo is taking a toll on my gut. Also, I think I’m dealing with some GvHD. I’m not taking any systemic steroids or immune suppressant drugs so the GvHD is not being suppressed at all. The doctors are not sure the exact cause. I guess that is another example of why its called practicing medicine.

To make things more interesting Barbara’s lower back has been extremely painful for her. She tweaked it last Thursday and it is being slow at getting better. Because of her temperament she is not giving it much of a chance to heal. We are quite a pair hobbling around the house. Tomorrow is the first day that Barbara will not be taking me to the clinic. A good friend will be taking me for her.

I solicit your prayers. Going into this treatment I was quite sure that it was God’s will that I do it. Because of my weakened condition I am not as confident about getting through this round of treatment in relatively OK shape. God is in control for sure. However, I need a touch from Him to help strengthen my faith.

July 20, 2007

2007-07-20T11:55:00.000-07:00

It is day +169. I just received a phone call from my doctor. The preliminary report (pathological) from the bone marrow biopsy last Monday shows no evidence of any leukemia in my marrow. The thorough report (cytogenetic) is a couple of weeks away. The first results tell I’m in remission and the second results how deep the total remission is. The first results are good news because with a remission the second stem cell transplant will have a much greater chance of long term success.

I will go into the hospital on August 2nd for a round of conditioning chemo. On day 14 after the start of chemo (August 16) I will receive the transplant. Then it is a long time of waiting, healing and recovery. I don’t know how long I’ll be in the hospital for this treatment. I hope not over 4 weeks.

Right now I am suffering with a lack of appetite and a lot of nausea. It is concerning not being able to eat and yet I continue to lose weight. I’m concerned that I’m going into another major treatment phase while only weighing 178 pounds, instead of 220.

There are several possible reasons for these symptoms, such as GvHD, effects of the last chemo, effects of having multiple rounds of chemo. I haven’t gotten a straight answer as to how we can attack the problem. There seems to be a lot of anti-nausea medicines to mask the problem, but no treatments to treat the source. I’m working on it.

Lately has been the lowest point for me emotionally. This process is getting quite long. I can’t express how important or helpful your prayers are. Please keep them up.

July 12, 2007

2007-07-12T16:15:00.000-07:00

Its day +161 and I’ve been home from the hospital for 6 days now. What a blessing. I’m eating better and feeling a little stronger. Being at home is a night and day difference from being in the hospital.

My counts are doing great. They continue to get better each lab. On Monday I’ll get another bone marrow biopsy to assess the condition of my marrow. If the marrow is still clear of blast cells, then that will be a great sign. If the leukemia is present that would mean my chances of the upcoming transplant eradicating the leukemia are slim. This is a crucial test and I’m hoping for clear marrow. Only God knows what the outcome will be. Even though I have my preference, I hope I’m trusting God to be in control.

The process and timing of my future treatment is that I’ll check in on August 7th or 8th for a round of conditioning chemo. (Round of chemo – makes it sound like I’m stopping in at happy hour for a quick drink.) The donor is being worked up now with the collection date of August 14-15. I will receive the transplant on August 15th. After the transplant is more hospital time until my counts rise again.

Time, on one hand, inches by each day. However, I can’t believe it has already been 6 days since I came home. We are so blessing to have a home when many families don’t.

My being home has been such a relief for Barbara. We still go to OHSU 2-3 times a week for labs. However, being at the hospital every day was very hard on her. Perhaps my weakened condition added to her stress. Barbara has been a real saint as far as her being my caretaker. She is wonderful.

I again am trying to express my thanks for your prayers and friendship. Words just can’t express my feelings. Please continue to pray for God’s will in my situation.

July 7, 2007

2007-07-07T07:03:00.000-07:00

Today is day +156. It is Saturday, July 7th. I am pretty sure that I’m going home today. My counts started going up on July 3rd and quickly continued so that yesterday they were high enough to go home. I’m really excited to go home.

Now it is go home and gain strength for the conditioning chemo and second transplant. It sounds like the transplant will happen sometime in early to mid August.

I need to get ready to go now so I can go when they give me my release forms.

Thanks for your prayers. They are working.

July 3, 2007

2007-07-03T12:51:00.000-07:00

Well its day +152 today. I’ve been in the hospital since June 11th so I’m getting pretty bored. The only real side effects of the chemo are that my stomach is a little queasy and I’m physically weak. I’m stuck here because my white counts have not gotten high enough to go home. In fact they are still at rock bottom. This is normal for the chemo I had. I should be going home about July 12th. It is getting pretty boring here but it could always be worse.

There is really nothing new to report. I’m just hanging out and waiting for my counts to rise.

June 27, 2006

2007-06-26T23:19:00.000-07:00

Just a quick update message for ya’ll. On Monday I had a bone marrow biopsy. The preliminary report just came back and my marrow is totally clear of leukemia (blast cells). YAHOO. The preliminary report is from a FISH test. The final tests, PRC and BCR ABL tests, can detect much smaller levels of blast cells in the marrow. Their results will take about two weeks. I’ll keep you informed as I get more info.

Please keep those prayers coming.

June 24, 2007

2007-06-24T18:09:00.000-07:00

Well, its day+147. That number will get confusing in 5-6 weeks. Right now it is the number of days after my stem cell transplant. In 5-6 weeks I’ll have another transplant so I don’t know if the “+” days follow the first or second transplant.

Here is a snapshot of me in my hospital bed. It isn’t flattering, but there isn’t much to work with.

The treatment plan is to get me home for a short while. Then I’ll come back in for conditional chemo. After the conditioning chemo I’ll get another transplant from the same donor. This transplant will contain fewer T cells and mostly leukocytes, the most aggressive white blood cells.

The leukocytes will add extra strength in the Donor verses Leukemia Effect (DvLE). They should eradicate any remaining leukemia cells in my marrow. The down side of added leukocytes is that they also intensify the Donor verses Host Disease (DvHD). However, I’ve had 147 days to change from my immune system to the donor’s system so GvHD is not as much of an issue. As you can imagine, this whole process is a delicate balancing act.

I’m still at a 40% chance of being cancer free in 3-5 years. After five years I would be considered to be in complete remission. Apparently getting two transplants is not that uncommon, so the odds come from actual cases, not best guess.

I’m finally feeling better after the chemo. God has spared me from mouth sores and many other side effects I could be experiencing. That is such a blessing. My white cell counts have not raised from the bottom (<100). The doctors assume that the white counts will be where I can go home at day 21-24 after chemo which is July 2-5. I’m hoping I get out early. I just love fireworks and seeing all of the stuff blowing up around our house.

I can’t tell you all how much I appreciate your prayers. Thank you from the depths of my being. Please continue to pray for God’s will. It will be interesting to see what His will is for me. So far, the journey has been hard and long. I look forward to relief from all of this medical stuff.

June 19, 2007

2007-06-19T13:41:00.000-07:00

I checked into the hospital on Monday, June 11th. There has been a lot of stuff happening while I have been here. I have had so many bags of stuff pumped in me that I wonder how I made it.

First, of course, I underwent 5 days of chemotherapy. There were 3 different types of chemo. One type was for three days and the other two were for 5 days. Last Saturday night was my last dose. Each day of chemo added a little more nausea as a side effect. I’m feelings a little less nausea each day now. I hope that continues at a rapid pace.

The doctors are quite pleased with the effectiveness of the chemo on the leukemia. I am at the lowest point of my count and will need to wait for my white count to rise before getting to go home. I could be here another 2 weeks.

The second issue is a loss of ability to lift my right foot. That means I can’t bend my right foot up toward my right leg. When I walk, my right foot will drag unless I lift it really high. There has been some nerve damage to cause this. I won’t go into the medical explanation, but I have 100% chance of some good improvement in recovery with 50% chance of total recovery. I am being fitted for a brace to help in the therapy now.

As far as the next step(s) to address the leukemia, the doctors need to wait for more info to decide timing. I’ll let you know when I find out.

You guys are great prayer warriors for me. Please keep it up. I want to be in God’s will and to not miss His voice.

June 13, 2007

2007-06-13T19:51:00.000-07:00

Starting about five labs ago blast cells started showing up in the peripheral blood. Over the course of four weeks it moved from 1% to 58%. This, of course, is considered a relapse. Because of this we have changed our course of action to the following steps.

This week I will be starting the first round of chemo which is specifically targeted to my situation. There is a 10-20% chance of morbidity going through this round of chemo. On the other hand the is a 40% chance this chemo will put the leukemia into remission temporarily. Within two weeks of the first round of chemo I will undergo a second round of chemo. This round is called a conditioning round and should eradicate any remaining leukemia cells.

As these two rounds of chemo are being administrated my donor is being contacted and hopefully being made ready for a second transplant. The second transplant will differ from the first one in that it will also include lymphocytes. Lymphocytes are the most aggressive white cells your immune system. This course of action is by far the most effective.

After the transplant the plan is to get started on a new study drug which targets the mutated cell 315 which is cause of all this relapse. The hope is that this drug from MERCK will hold down the proliferation of the leukemia while the graft becomes very strong in the marrow.

Please continue God’s will be done and that Barbara and I will be strengthened to endure it.

June 7, 2007

2007-06-07T17:17:00.000-07:00

Its day+125. I know this update is coming out very soon after the last update. However, many details have been developing quickly and I’m trying to keep you all current.

Over the past two blood draws there have been some “atypical” cells showing up in the peripheral blood. This is not abnormal. However, the counts are going up slightly and not down. Because of this, another BCR-ABL test was done yesterday to determine exactly what the cells are. I had another bone marrow biopsy done also. Preliminary indications are that there are some leukemia cells active in the marrow.

What does this all mean? Two things are obvious. My treatment is going to be ramping up quickly and my prognosis for long term survival is less favorable than before. The doctors are still quite optimistic that a cure is possible. There are a number of therapy options left and we will have to decide which one or ones are worth pursuing. The following are a few of the most probable ones.

Part of the transplant process requires using steroids to suppress immune system of the donor from attacking my good cells. Without steroids, a severe case of GvHD could easily be fatal. Over time my old immune system will be totally gone and the donor immune system will completely take over. As the transition to the complete donor immune system occurs, steroid dosage is slowly reduced and eliminated.

On the other hand, the immune system is the mechanism that targets and destroys any residual leukemia cells. Because the steroids are suppressing the immune system, the immune system isn’t as able to destroy the leukemia cells. To improve the graft verses leukemia effect the doctor is rapidly lowering my Prednisone dosage. The doctor has cut my steroid dosage from 35mg to 15mg. Prior to this the dosage has been reduced by 5mg every three weeks.

There is a new aural steroid called Beclomethasone, which is not systemic like Prednisone. Systemic means it builds up in all parts of the body. Beclomethasone is not systemic. It is an aural, time released, steroid that will stay in the digestive tract to help any remaining GvHD to heal. But it does not have the same effects on muscles, immune system, and other organs like the Prednisone. We have been working on getting it for several weeks now because Kaiser does not compound it and it is so new that it hasn’t been recognized for use with CML. Only a few specialized pharmacies can compound it. It appears that I will have it on Monday. When I receive it the Prednisone can be reduced rapidly without the same exposure to GvHD relapsing.

Another area that the doctors want to pursue is to check my spinal column for any leukemia cells with a simple spinal tap. Apparently, the brain and spinal cord have a heightened immune system and protection that is somewhat separate to the rest of the body. When a person receives normal chemotherapy, it does not penetrate the protective barrier around the spinal cord well. This means leukemia can hang around the spine (like a storage facility) and not be eradicated by the chemo. If there are leukemia cells in my spine, there is a specialized chemo that has very few side effects that should remove all of the cells.

There are many different mutations of white blood cells that are classified as leukemia. When I was first diagnosed, I had a #148 mutation. Now the cells in my peripheral blood have been identified as #315. A new drug has been developed by Merck Pharmaceuticals that is highly effective against the #315 mutation. It is currently on trial at Stanford University so I would have to go there to take part in the study, should I choose to go that route.

I am so thankful that I can trust the Holy Spirit to be my comfort and my guide. This would be a long, scary journey without Him. Since I know where I’m going after this life, I am not interested in trying to hang on to this temporary life, especially if that means my remaining quality of life will suffer. Please pray for clarity for Barbara and me and for God’s will to be done.

June 4, 2007

2007-06-04T18:53:00.000-07:00

Day+123. Well yesterday was another milestone in my life. On June 3, 2007, Barbara and I celebrated our 35th wedding anniversary. I am truly a blessed man. Barbara has been a great friend, wife and caregiver. We have had a great run overall. Of course there have been some big bumps in the road, but with God’s help they were overcome.

Thank you for all of the offers for treadmills. I got one yesterday from a friend and did my first attempt to walk on it today. I was only able to walk at a very slow pace for about 2-3 minutes. Then my legs burned and got really shaky.

I still don’t have much energy. A physical therapist came this morning and has started me on some rudimentary muscle stretches and exercises. They are designed to slow the muscle atrophy process. Apparently I can’t undo or rebuild muscle strength while on the steroids. I can only retard the muscle loss caused by the steroids. I am supposed to do exercises and walk every 2-3 hours. This will be all I can do physically each day. There is puzzlement because my right foot is being so much more affected than the left foot. Oh well, I seem to be the odd one through this process.

My stomach still objects to most foods and is punky feeling most of the time. My appetite has not been too good but I force myself to eat to keep up my weight and strength. I have reverted to chicken noodle soup, toast, scrambled eggs and applesauce. Occasionally I’ll venture out to French toast or pancakes, a Snapple or canned peaches.

I am really getting to understand how the Israelites started complaining about manna. Just as God was supplying all their needs, he is supplying all of mine. However, I seem to have a different perception of what I want. It’s hard to be thankful when I’ve experienced a different type of God’s blessing for so long. I am beginning to understand that I have been expecting certain treatment as my rights, instead of relying on God’s grace. I’m thickheaded, but I am learning slowly.

Again, I solicit your prayers. May God’s will be done.

June 1, 2007

2007-06-01T19:00:00.000-07:00

Its day+120 today. I am still not feeling much energy. In fact, my energy level is pretty puny. I just returned from the doctor a couple of hours ago and my blood counts are very similar as before. I feel like I’m treading water at the deep end of the pool and it’s not time to get out yet. The frustrating part is that no one has, or is able to tell me how much longer I have to be there treading water. Of course, treading water is tiring on the old body. I’m just keeping my head above water and trying to smile.

Changing my injected medicine from Procrit to the new one has cured all of the bone pain I was experiencing. I was able to stop taking the Dilaudid for pain. When I stopped the Dilaudid (a man made derivative of morphine) I was pretty depressed for a couple of days. I think the depression was withdrawals from stopping the Dilaudid. I found out later that I should have tapered off slowly. Oh well, another of life’s lessons.

The Prednisone continues to take affect on my muscles. Even at my reduced dose it is affecting muscle strength. I am having a hard time raising my toes and foot on my right leg. It makes tapping my foot to music a left footed task. A physical therapist will be coming to our house on Monday to help me with a regime to retain as muscle as I can. Since my legs are weak, my balance isn’t very steady. That makes it harder to walk, especially on uneven surfaces.

I am wondering if one of you has a reliable treadmill collecting dust that I could borrow for a few weeks. We don’t have the room or desire to have one long term, but having one temporarily would help me exercise my muscles with the aid of having something to hold for balance. I would be less likely to fall.

I needed to get this out but must run because I am on my way back to OHSU for an MRI to assess any possible changes in my spine that could cause my right foot to not work properly. The doctor feels it is totally caused by the effects of Prednisone, but he always very thorough.

Thanks again for your prayers and kind thoughts. Please keep them up.

May 15, 2007

2007-05-15T17:12:00.000-07:00

Today is Day+103. It’s not been that long since my last update but several of you wanted to hear the results of the bone marrow biopsy when I got them. I saw Dr. Mauro today and the good news is that all but one of the test results were back.

We wanted to see at least 95% donor cells in the marrow and less than 5% of mine. There were 0 of my cells found in the marrow. My transplant is 100%, which is a great thing. I guess I’m no longer the old Art. However, I don’t know what the new Art is so we’ll have to discover me together.

My marrow is hypo cellular, which means the marrow has a lower than normal number of cells in it. That is normal for this time in the process. As the donor cells multiply they will fill it up. The marrow is hypo cellular because leukemia had occupied a lot of the marrow and the leukemia isn’t taking up that space anymore. There were NO signs of leukemia activity and my marrow is clear of it.

The one test that wasn’t back is called a PCR test. The PCR test is the most sensitive test to detect any residual leukemia markers in the blood. For some reason the PCR test was not done by the lab. They drew another blood sample today and Dr. Mauro has ordered the test again. It will be a couple of weeks before those results are back. Dr. Mauro is very sure that there will be no surprises with the PCR test because of the other results we did get. It appears I’ll be around for at least a while longer.

I got to lower my prednisone dose again today. YAHOO. The decrease is small, but I’ll take anything.

May 12, 2007

2007-05-12T19:42:00.000-07:00

Well it’s officially Day+100 today. Although today is a milestone, it is not magical. It signifies my living through the acute phase of the stem cell transplant process and transitioning into the chronic phase. The probability of living long term without a relapse of leukemia (over 5 years) goes way up when a patient lives through the first 100 days. Many patients die early in the process by Graft verses Host Disease, a serious infection, relapse of leukemia, rejection of the new stem cells, or all the trauma to their bodies, heart or other organs.

I have been thoroughly blessed by God to have been spared. It has been such a blessing to have some great time with God, Barbara, the boys, family and friends. This process and my experiences have really changed who I am and what is important to me. I hope that as I heal I will continue down my path in the same direction. God has gotten much more significant and I much less.

Since about 2 weeks ago I have had a slight increase in stamina and physical well being. We went to church last weekend and that was really special for Barbara and me. I’ve also been getting out of the house occasionally to the store or on an errand. I’ve even been out working in the garage and the yard a little. I still tire easily but not as soon as before. I’m hoping that there will be another lasting positive step soon.

I’m going to stop my normal update and recap the first part of my journey for those of you who have started receiving these updates later and want to hear where I’ve been in this medical process.

I love you guys. Please keep praying.

WHERE I’VE BEEN SO FAR.

I was originally diagnosed with Chronic Myeloid Leukemia on October 23, 2004. I was placed on a new miracle, study drug called Gleevec 2 days later. The leukemia responded well and for the next 17 months and my life was pretty normal except for weekly labs to monitor my disease. The final process in my journey started back on May 22, 2006, when my chronic myeloid leukemia had stopped responding to the Gleevec.

In a matter of a very few weeks my disease had progressed into “blast crisis” where the leukemia was rapidly taking over. In fact my marrow was 95% affected by the leukemia, instead of the 10% of the last test. If the blast crisis had occurred even a couple of years prior, I would have quickly died because there was no therapy to overcome it.

However, through a succession of study drugs and therapies, the doctors were able to get the leukemia under control to the point that it was nearly undetectable when the transplant took place. Having such a low level of the disease present raised my chances of long term success from far less than 20% to somewhere over 50% with a transplant. There is no accurate data on success rates for me since people died when they went into blast crisis.

I’m the first generation of patient to go through the transplant process with this therapy. I was supposed to get a transplant in late December but a first donor became unavailable in the week prior to the scheduled transplant. Then a second donor was very quickly tested and I received my stem cells on February 1, 2007. I rebounded well from the transplant and was released from the hospital in 14 days, which is very early compared to the normal 5-8 weeks.

After being home for a few days, I developed Graft verses Host Disease and returned to the hospital for another 11 days. GvHD is a condition where the donor stem cells not only try to kill off any remaining leukemia cells but they try to kill my normal cells, especially digestive tract lining, skin, and liver. My particular GvHD has been hanging around my digestive tract and I still have to be careful with my diet.

It was 256 days of labs, biopsies, hospital visits, being very ill and many drugs between blast crisis and getting ready for transplant. Now it has been another 100 days since transplant. So I will be “celebrating” one year of going through the final portion of my process in another 9 days. On one hand it has been a long, long time. However, when I sit and meditate on where God has taken me, it seems much faster.

May 1, 2007

2007-05-01T15:00:00.000-07:00

It is day+89 today. Twelve days until I can celebrate day+100. Yesterday I had my first bone marrow biopsy since the transplant. That wasn’t fun this time. The doctor had a problem with a blood clot forming at the first location so he had to bore a second hole after trying a few times unsuccessfully to aspirate a sample. OUCH!! Oh well, can’t win them all.

What we want to see from this biopsy is over 95% of the donor T cells and less than 5% of mine. These numbers mean that the transplant is progressing at the best possible rate. We also want to see no signs of leukemia in the marrow. Another test called a PCR test is being performed. The PCR test shows a cancer cell marker in the blood at levels far below any other test. We could see that there is still some of the marker of leukemia left. In fact, it could take up to a year to have the marker completely go away. All of the test results will hopefully be back in two weeks.

My strength is still an issue. The prednisone is keeping my muscles pretty weak. If I get up and do something requiring too much energy one day, I will have to just sit and/or lie around for the next couple of days to feel better. Its one step forward and two steps back as they say. But you know, I can’t complain. I am getting a little bit stronger than 3-4 weeks ago.

I just need to remember that it’s not about me. Everyone has issues. Mine aren’t worse, just different. I also need to remember who is in control anyway as it says in 1 Peter 2:21-25 To this you were called, because Christ suffered for you, leaving you an example that you should follow in his steps. "He committed no sin, and no deceit was found in his mouth." When they hurled their insults at him, he did not retaliate; when he suffered, he made no threats. Instead, he entrusted himself to him who judges justly. He himself bore our sins in his body on the tree, so that we might die to sins and live for righteousness; by his wounds you have been healed. For you were like sheep going astray, but now you have returned to the Shepherd and Overseer of your souls.

Thanks again for your prayers. I would appreciate prayers for good test results, if that’s God’s will.

April 26, 2007

2007-04-26T16:12:00.000-07:00

Today is day+84. It’s hard to believe that day +100 is just around the corner. It seems so long, so very long ago that I started my love affair with chicken. I have been feeling pretty well off and on. I’m supposed to “be active”, which means do very limited projects or exercise, but not too much. I went out into the garage and just bending over and grabbing stuff to throw away was enough to cause me to rest again for a couple of days. I understand better the delayed effect of exercise and am getting a better handle on how much I should do.

As I mentioned in my last update, I saw my doctor, Michael Mauro, last week. We had a great discussion about what to expect, progress, where I’ll be when. By the end of the conversation I sensed that Dr Mauro was ahead of me with a carrot just out of reach and I was the mule following the carrot.

Dr Mauro basically said, “Art we brought you out of a very, very bad place with great success. We then found a donor and performed a stem cell transplant. We knew that there would be GvHD issues because of the donor we chose. We didn’t tell you about the surety of GvHD because you were facing enough trauma facing the transplant. You are coming through the GvHD splendidly. The next hurdle is the bone marrow biopsy. From your blood counts I’m confident we are going to find good results. We need to get you off the steroids before you will get any stronger.

By the way, the +100 day mark is not anything magical. You will probably be right where you are now. Your life may not ever be as you hope it will be. There is the possibility that the leukemia will return within the first year. We expect to see a small amount of negative PRC for the first few weeks/months. Then we want to see the PRC turn from negative to positive during the first year. All indications say the leukemia has been severely eradicated and you’ve got a great start on beating the disease. You need to do your part now, which is do some exercise and don’t overdo it. And you need to quit expecting to know what’s next. What happens next is what will happen next. (In other words, be happy I’m alive because there was a much higher chance I should be dead right now and I should be content I’m alive.)

Of course being the kidder I am, I thanked him for the info then I immediately asked him when he thought I would be strong enough to go play some golf. He gave me the look!!!

All kidding aside, I’ve been meditating on all God has done me and how I’ve been blessed through this process so far. Dr. Mauro reminded me how spoiled, controlling, and impatient I really am.

Psalm 33:20
We wait in hope for the LORD;
he is our help and our shield.

Isaiah 30:18
Yet the LORD longs to be gracious to you;
he rises to show you compassion.
For the LORD is a God of justice.
Blessed are all who wait for him!

Lamentations 3:25
The LORD is good to those whose hope is in him,
to the one who seeks him;

I love you guys. Thanks for your prayers.

April 18, 2007

2007-04-18T19:08:00.000-07:00

Today is day+76. Barbara and I went to the beach for a couple of days. We went to Seaside and I was able to walk the promenade. We also went to the outlet mall and walked some more. I am pretty jazzed that I could walk so much and I’m not suffering because of it today.

We went into the clinic today and found out that I am being transferred from the BMT (bone marrow transplant) team and back to my doctor at OHSU. This means that I’m out of the acute stage of the healing process and going into the chronic (long term) part. I will get lab work done once a week but only see the doctor every 2-3 weeks.

I finally feel like I’ve turned the corner and am gaining some stamina. My white cell, red cell, platelet, and neutrophil counts are much better. They are still not perfect, but getting better. My chemistries, such as potassium, magnesium, electrolytes, liver function, etc. are doing great too. One of the best things is that my protein level actually is improving. They are doing a special albumin test which is a better indicator of where my protein reserve level really is.

The thing that will make the most improvement now is for me to get off the prednisone. It is still tearing down my major muscles. Also, even though my ANC (absolute neutrophil count) is high enough to be out in crowds, like church, the prednisone suppresses my immune system so I can’t be in crowd yet. A couple of weeks ago my prednisone level was raised as a precaution against GvHD because my stomach was acting up. They are slowly lowering it each week. I can’t wait till its zero.

Within a couple of weeks I’ll have my first bone marrow biopsy since the transplant. The biopsy will give the best indication of what’s going on with the transplant. It is also going to tell us if there is any indication of leukemia left in the marrow. I’m of course a little anxious because of the possibility of finding some leukemia.

Thank you all for your support and prayers.

April 10, 2007

2007-04-10T14:35:00.000-07:00

It is day+67 and there isn’t a whole lot of change to report. I’m still pretty weak and sit around most of the day. On one hand I feel pretty lazy and unmotivated. On the other hand it is very frustrating not to have any more energy. I really physically over did it again last week and I am still feeling the effects. When I overdo it by expending too much energy, it takes several days to overcome the tiredness.

It was very hard for Barbara and I to not go to an Easter service. We stayed home and read scripture, as we do most days. We have heard that the service was a great one and are anticipating getting it from the internet.

For a while I was putting on some weight. However over the past week I’ve lost a few pounds again. My stomach has been feeling a little “puny” and we are treating for a minor GvHD flare up. We should see a difference in a few days, if the diagnosis is correct. It appears to me that I’m fighting the effects of a minor bout with GvHD. Losing weight can be caused by a more limited inability to absorb nutrients and proteins because of GvHD.

I’ve finally begun growing some hair back. Basically I am only getting a mustache and beard again. There is no hair growing on my head (or anywhere else) yet, but I anticipate it will be starting to come back pretty soon.

I have been released to go to a friend’s home, as long as there haven’t been any sick people there. Also, there shouldn’t be a lot of people in close proximity. I can also go to a clean restaurant (no taco trucks or buffets). I’m still not eating beef, dairy or other hard to digest foods. Sometimes I feel like I’m going to grow feathers from all of the chicken I’m eating.

I wish there was more to report. But I’m afraid this amount of progress is the way it’s going to be for quite a while.

March 30, 2007

2007-03-30T20:30:00.000-07:00

Today is day+57 and it has been a great day. I think the sunshine has really lifted my spirits a lot. My energy and physical stamina hasn’t changed much at all from the last update. That has been disappointing to me. I have always been an active guy but most days I can only get downstairs and sit much, (if not all) of the day on the sofa.

My mind is constantly going like I’ve had 2 pots of strong coffee because of the prednisone. So I’m sitting here with a million ideas bouncing around in my head but my body can’t cash the checks. AARRG. My lowest weight was last week at 196 pounds. Today I was at 202 pounds. That means my absorption is getting better and my protein levels should start slowly replenishing. My protein stores are severely depleted, which greatly affects my energy reserves.

From what the bone marrow transplant team keeps telling me I have several weeks to go before I can expect much of an energy increase. They also say I am making “stellar” progress and that I can’t expect any better results than I’ve had so far. During my lab appointment today, when I was being seen by my nurse practitioner, I was told that I need to keep as active as possible so that my muscles will rebuild as much as possible. I need to stay as healthy as possible so that when the next “bump in the road” happens, I won’t be physically taken down as far.

It is hard for me to believe that my progress is great or that there is another bump coming. On one hand, I am trying not to over anticipate God’s graciousness to me, but on the other hand He has been so gracious thus far I keep anticipating His favor to continue. It has been a fine line of not being over expectant, but celebrating His continued grace.

Again I can’t believe how Barbara has given up her control, freedom, schedule, even life to be my caregiver. She is constantly responsive to me and continues to give beyond anything I can imagine. She is a real trooper.

I just found out that on day+60 I can start being around a few people out of the house as long as they are not sick. I need to not get in close contact, but I can hang out with people again, if my energy level allows. That is really going to be great. I can’t go to church or go to Costco on Saturday when there are a lot of people in close proximity. However, Costco on Wednesday morning when it is not crowded is OK. Also, I can go to restaurants as long as the food and restaurant is clean. No buffets, taco trucks, fresh salads or vegetables. My diet is still limited to ensure that any GvHD will not flare up again.

I hope you all have a great weekend. I plan on taking in some of the Final Four games.

Thanks again for your prayers and for sharing in my journey.

March 23, 2007

2007-03-23T19:00:00.000-07:00

Today is a real milestone. It is day+50. I’m ½ way to the magically day+100 when the acute period of the transplant process is over. By that time my circumstances will have given the doctors a good indication where I will probably end up to be. Again, there will be no guarantees, just some statistical data.

I am feeling so much better than last week. Today I made it up the stairs without using my arm muscles, which has been a major goal for me since I came home from the hospital. The last 4 steps were really hard though. Later in the day I had my laptop and with just that little extra weight, I couldn’t go up the first 3 steps without hands. I still have work to do.

At my appointment on Tuesday my nurse practitioner gave me a great explanation as to why I’m so weak and progress is slow. She said I’m a big man, who at 6’ 8” and 230 pounds should have a calorie intake of about 2500-3000 daily. However, when I was in the hospital for the transplant, my daily need was probably closer to 5000 calories because of the trauma of the transplant process on it. Again, when I went back in for the bout with GvHD (Graft versus Host Disease) my daily need was held at the 5000 calorie level as my body continued to try to repair itself and fight the GvHD.

However, because of the sloughing of the lining in my digestive tract I was not absorbing much at all from any food I ate. Coupled with the fact that I was only eating broths and little else, my muscles were atrophying as my body was channeling the calories to repair itself. The other circumstance is that the steroids attack the larger muscles and further weaken them.

My absorption is much better now and my appetite is very much improved. Here’s how I’ve been eating. Yesterday at 6:00am I had a large bowl of chicken noodle soup with carrots, onions, and corn and a cup of tea. At 10:00am I ate 4 pancakes and a large pork sausage that was very lean. Then at 1:00pm I had a thick tuna salad sandwich containing water chestnuts, boiled eggs, olives, pickles, onions, mustard and a little mayo. Along with the sandwich I had a large bowl of applesauce and banana slices. At 3:30pm I had another thick tuna salad sandwich and a Snapple. Then at 6:30pm I had a pork steak, baked potato, and 1 ½ cups of steamed carrots. I finished out the day by eating two big bowls of popcorn while watching the UCLA game. Needless to say my appetite is coming back very well.

By monitoring certain medicine levels in my blood we can tell that my digestive tract lining is rebuilding because my absorption of the medicines is much improved. I’m hoping that I will stop losing weight soon and stop the muscle atrophy. My weight is 197 pounds, which is about what I weighed when Barbara and were married 34 years ago, instead of 230 pounds where it had been hovering for the past 6 months prior to the transplant.

Being an engineer it really helps me to know where I am in the scheme of things while going through a process. When I told the nurse practitioner I wish I knew what the yardstick was to measure my progress, she smiled and said I was the top of the yardstick. If all patients were where I am with what I’ve gone through she would be very happy.

So again I sit here in total awe of God and His provision and grace in my life. I don’t understand why He chose to bless me and certainly don’t feel worthy of it. However, I am truly thankful that God has chosen to glorify Himself by protecting me from so much more pain and suffering.

March 19, 2007

2007-03-19T11:48:00.000-07:00

It is day+46. If you remember from my last update, I walked around Costco last week. Well that was a bad idea because it was too much too soon. I suffered for it, especially the next day. I had no energy and my feet / ankles looked like Nerf footballs from the edema (swelling from trapped fluids around the tissue) for the next couple of days. I just have to learn that as long as I sit around, I feel good. But, I can’t do much physically. My mind is going miles per hour from the effects of the steroids but my body can’t keep up yet.

Yesterday I bent over to plug in an electrical cord and I was stuck there with my feet and both hands on the floor. I couldn’t get up and I didn’t want to go to the floor because it is so hard to get up. I finally made it up after looking like a new born calf trying to stand for the first time. That was another reminder of baby steps, Art, baby steps. I still have to help with my hands as I go up the stairs, but with not nearly as much pressure as when I came home. It will be a red letter day when I can go up all the stairs without using any hands.

My diet is still very restricted and bland, but my appetite is back to full strength. I’m getting tired of chicken, chicken, chicken and I’d really like a salad, but I’m being very cautious because the GvHD was really a bad experience. I do not want to go through that again.

I’m currently taking 34-35 pills of various medicines every day and getting magnesium infusions twice a week. Hopefully I can quit taking so many chemicals soon.

During my last out patient appointment I found out that I probably had a bacterial infection that led to the diarrhea that caused my last trip to the hospital with GvHD. Because the doctor performed biopsies right away they found the start of GvHD very early and were able to get it under control before I felt the full effects.

The nurse practitioner said that mouth, throat, and gut pain for most people with GvHD causes the patient to quit eating. Most patients when GvHD attacks require IV nutrition both while in the hospital and for a while after going home. With IV nutrition my protein stores would be even more depleted as I am now and I would have been much weaker. ONLY GOD

It has been so great to be home. It relieves a lot of pressure on Barbara. We still live day to day, not knowing what God has in store for us. All we do know is that He is in control and has been very gracious to us.

Thanks again for your prayers. You are an important partner in my journey.

March 15, 2007

2007-03-15T07:43:00.000-07:00

Today is day+42 and I’m progressing slowly, but in the right direction. Yesterday I actually left the house and walked through Costco with Barbara. I was glad we had a cart because it doubled as a walker to help hold me up at the end. I made it the whole way around the store. Amazing how therapeutic a walk in Costco can be.

The doctors would not be happy because of my being around the public. I carefully stayed away from people and wore my special mask. My muscle strength is returning slowly. Now I can walk up our stairs without much help by using my arms. I’m slowly adding different foods and my GI tract is doing great so far.

I received a letter from my donor at my last lab appointment. My Donor and I will not be able to find out names or locations for at least 1 year from the transplant. Until then, I send emails to my donor through the unrelated donor coordinator at OHSU. She censors it and forwards the emails to the donor registry where my donor registered. They censor it and send it to my donor. One that thing I noticed in the letter is that my donor wrote mum and dad, not mom and dad. I suspect that she is British, but probably won’t find out until a year.

Together we are making daily progress. I thank you for your prayers.

March 11, 2007

2007-03-11T21:05:00.000-07:00

It’s day+38 and I’m doing so much better. My GI tract is doing well and I’m starting to add some things to my diet. 2 days ago I had a scrambled egg and yesterday I added bread to make French toast. Today I took some canned chicken and made chicken salad with a little mayo and mustard and had a sandwich. So far so good without any more flare up of GvHD symptoms.

When I first came home it took me about 1 minute to climb the stairs. I had to pull myself up with my arm muscles because my thighs were so weak. When I got to the top of the stairs I had to stand and rest before I could walk any farther. It was a really weird experience. My high dosage of prednisone debilitates the large muscles near the body core. That along with living on a very low protein diet has depleted my protein stores.

Today I can get up the stairs in 15-20 seconds and continue without stopping. I still need to use my arms to help, but not nearly as much. Each day I feel a little stronger (very small steps) and am so appreciative of God’s grace to me. My prednisone dosage has been lowered a little and will continue to be lowered slowly now as long as no GvHD symptoms flare up again. That should help my muscles to work better again.

Being home has been great for Barbara as well as me. When she went to the hospital every day there wasn’t one spare minute for her. Now she can be home and have time to do some things for herself. I can’t express how well she cares for me and what an angel of mercy she is.

Thanks again for your prayers. God is really doing miracles in this old body of mine.

March 6, 2007

2007-03-06T12:39:00.000-08:00

It’s day+33 now and I’m getting better by the day. In fact, I am going home tomorrow, Lord willing.

I have been raised from GvHD diet level 1 to level 2. That sounds great but in reality it is still very restrictive. They have added things like mashed potatoes (with no milk, butter or other flavors), pasta or white rice (with no sauce, butter or anything) and cooked carrots to the broth and liquids of level 1. Basically I pour chicken broth over the new stuff. Level 2 is a LOT better than having an appetite and drinking broth only, but a bit boring. I’ll certainly take boring over feeling like I did when I came in.

My GI tract is so much better. What a blessing. My medicines have been all switched from IV to oral and the medicine levels in the blood are staying where they should. All this is a good indication that my GvHD is going away, or at least under control.

I’ve always approached this healing process as pushing myself and being positive will speed the recovery. This bout with GvHD has changed my tactics a lot. With GvHD one must plan on going slower than they can imagine and allow the sloughing of the GI lining to heal at a very, very slow rate. This is another lesson in patience that I protest so much.

God has been so gracious to me. There are 3 bone marrow transplant units here at OHSU. As I walk around the unit I am in and in the previous one also, I have seen so many people who aren’t doing very well. I am truly thankful for His grace and favor in my life.

February 28, 2007

2007-02-28T14:02:00.000-08:00

Well it’s day+27 and I’ve been back in OHSU since Feb 24th. I have a bit of redness (doctors call it a rash but Barbara and I don’t see a lot of difference from normal for me) around my neck and my stomach is puny most of the time. There have been many bacterial, viral, and fungal tests done. All were negative.

A dermatologist took a paper punch sized biopsy off my upper back skin and a gastrointestinal doctor scoped my GI track from both ends and took biopsies from both areas. These tests were made to confirm whether I have a mild case of Graft verses Host Disease (GvHD) or some sort of infection. The skin biopsy came back positive as GvHD. The doctors were pretty sure it was GvHD when I came in, but needed to do all of the tests to be thorough.

As mentioned earlier, GvHD is a good thing when mild. It indicates that the graft cells will attack and kill left over leukemia cells, if any were left. I have a mild case since my stomach area has been affected. However my lower tract, skin and liver are doing quite well. They are now treating the GvHD with more steroids and immunosuppressants.

I have been on broth and liquid diet since being admitted. Everyone is so different but a likely course for me from here will be to add some plain white rice in a few days, then crackers and bread in a few more days. After that they will add some simple veggies and chicken meat, then fish. And finally in about a month I can have a steak (they never mentioned when I can have a Costco sausage). Again, this is a guess, not any promises. Oh well, I trust that God has all of that in control anyway.

Again, you all are so important to me. Thanks for your support and prayers.

February 25, 2007

2007-02-25T14:36:00.000-08:00

As of Saturday morning Art is once again checked into OHSU. Friday evening he could no longer eat or drink anything without his body rejecting it. He is now on IV fluids and IV medications to help him get back on track.

At this time the doctors are not sure exactly what is going on but they are treating him for Graph verses Host Disease (GvHD). We were told when we left the hospital the first time that this could happen and it does not appear that anyone is alarmed with the situation. On Monday they will run some tests on his GI track for more information.

Overall Art does not feel well and sleeps most of the time. We will be able to go home again when he can eat, drink and do “normal” body stuff again.

We so much appreciate all of your kind thoughts and prayers. God is good – always and He knows what we need.

Barbara for Art

p.s. Thank you to whoever put the WELCOME HOME sign on our front porch that was fun to see when we drove up.

February 19, 2007

2007-02-19T18:37:00.000-08:00

Its day+18 and I went to the clinic for blood tests again today. I’ve been on an every other day schedule to the clinic since I was discharged on day+14. I don’t know how long that schedule will be, but it is a real drag to require Barbara to pack lunches, get things ready and drive me to OHSU every other day. Barbara has been so great to me and understanding. I’m so blessed to have her.

I received an IV of magnesium this morning as my count was low. Apparently my electrolytes, like potassium and magnesium, are leached out by the anti rejection meds I’m taking. I am trying to eat foods that are high in potassium and magnesium since those IVs take a long time to administer.

The clinic is a large room with recliners, IV pumps and caretaker chairs all around the perimeter. You go in, take an open chair and are there until labs are drawn, the results come back and any infusions are given. It takes between 2 and 8 hours each visit.

I thought I would feel a lot better by now, but I am told that I will be weak, nauseous, and fatigued for several weeks. This is due to my old and my new immune systems learning to get along. As the new immune system takes over more, the side effects will hopefully diminish. If there is a lot of GvHD, then the side effects will linger until the GvHD is successfully treated.

I’m so grateful to be home. It offers a great deal of normalcy to an otherwise surrealistic journey.

Thanks again for you prayers.

February 14, 2007

2007-02-14T20:29:00.000-08:00

I hope you are all having a Happy Valentine’s Day. Barbara stopped by Godiva Chocolates so we could give the nursing staff a Valentine’s Day box. The box she brought was huge. Also, some of you sent flowers and cards to them. You should have seen their faces. They were truly blessed by your thoughtfulness. I guess I don’t need to say who got the best treatment in 7CAO today.

Yesterday my white count was .5 and I was hoping that it might double to a 1.0. The plan was that if it doubled each day, I could have gotten out of here in 5 days. However it did not double as hoped. Instead it quadrupled to a 2.0. WOO-HOO.

The doctors were so impressed that they are planning on sending me home tomorrow. Yes, that is right. I’m going home tomorrow. It’s been less than 3 weeks since I checked in and today is day +13. I am both happy and astonished. I was hoping to get out early, on about day +21. My nurse can remember someone being able to leave on day +17 before, but never day +13. ONLY GOD.

Even though I’m going home there are still a lot of steps to climb. Now is the time when GvHD can start causing problems. Also, I’m still highly susceptible to serious infections. I’m off to a wonderful start and am settling into getting through day +100.

They gave us this pill organizer that is about 14” long X 10” tall X 2” deep. There are 7 columns wide for days of the week and 4 rows high for 4 times a day. Apparently the thing will be full when I leave and is designed to help me not forget all of the meds I will be taking each day.

I’ll let you know if plans change or the next update will be written from home.

Thank you again for your prayers.

February 13, 2007

2007-02-13T05:32:00.000-08:00

Well it’s 4:30AM and I was just told that my white cell count is at 500 (0.5 on the CBC report). This is great news because 500 is the point when my engraftment should be really taking off. From here my blood counts should rise so that my white cell counts almost double on good days and at least go up significantly every day.

It is possible that I could be going home in 5 days, but more likely that I will be going home in 8-11 days. There are five hurdles to jump through to be able to go home.

1. My ANC (absolute neutraphil count) must be at or above 1500 (1.5 on the CBC report) for two consecutive days.
2. I cannot have an elevated temperature (fever)
3. I must be eating and drinking sufficients amount for good nutrition.
4. Any diarrhea must be controllable.
5. Any GvHD (graft verses host disease) must be under control.

My mucositis is almost totally gone. I can touch anywhere in my mouth without pain, swallow without pain and I haven’t had to get and morphine shots for pain or ativan shots for nausea since yesterday morning. This is a huge blessing. It is also a sign that my counts are on the verge of coming up quickly. YAHOO!!

Several of you have requested that you be able to help me when I need it. I do have one thing I would like to do and you could help me accomplish this so much better. If you have a spare Thank You card or Valentines Day card, please send it to the staff of this unit. They do such a great job day after day. I know that some extra at-a-boys would really make their days special. If you want to send candy or flowers, they would be welcome too.

Please feel no pressure to do this. It is strictly if you want to do it. You will be writing to the medical staff in unit 7CAO. Address your envelope to:

OHSU
Nurses Station in 7CAO
3181 SW Sam Jackson Park Road
Portland, Oregon 97239-3098

February 12, 2007

2007-02-12T06:13:00.000-08:00

It is day +11 since I received my new stem cells. According to the doctors sometime in the next 5-6 days is when we should see my blood cell counts start to rise. The rising counts will confirm that the new stem cells are engrafting in my marrow and they are producing good cells.

The blood cell counts will start rising slowly for the first few days and may even bounce up and down on the way up. Once the total white count reaches 500-800 then the rise will increase much faster. A successful engraftment will be official when my ANC (absolute neutraphil count) reaches 1500 for two consecutive days.

One very common condition that occurs to transplant patients is mucositis. It is a side effect of chemotherapy and total body irradiation and is heightened because my white blood counts are so low. Sores have developed in my mouth, making it very hard to swallow due to extreme pain. I didn’t get sores until a couple of days ago, which is a real blessing.

Most patients start getting sores within a few days of the chemotherapy and have the sores spread until their blood counts rise. In fact, a large percentage of patients have mucositis so badly that they are on a pain medication pump and are fed through an IV. My mucositis pain has been controllable and I am still eating ok.

Other that mouth pain my days have been very uneventful. I used to say boring, but have found that uneventful days are far superior to days when something new has happened. Something new seems to bring with it a feeling of “slight pressure”. Slight pressure is a term used by medical personnel that means extreme pain.

Thanks again for your thoughts and prayers.

February 8, 2007

2007-02-08T19:50:00.000-08:00

Today is day +7 and all is well. My blood counts have risen for the past two days. This can mean that the new stem cells are in and doing their thing. However, it can also be a false start that will drop again before the real start.

The doctors have said that it really is presenting itself as an actual rise, but it shouldn’t start until day +10 thru +14. I told them that I have over 100 people praying for me and that can cause a lot of differences. So far they are not buying that. However, they will learn.

Today marks another start. I woke up with a lot of hairs on my pillow. They are all short since they had just started growing from the last chemo. My eyebrows are also leaving. They never fell out yet so it will be a first without them. I guess the chemo and irradiation did its job.

My nausea and diarrhea are still under control and my mouth is still not sore like it should be. God is continuing to bless me daily.

February 7, 2007

2007-02-07T06:29:00.000-08:00

First, I need to correct my last email. Today is day +6, not yesterday. I keep forgetting that the day of transplant is 0, not 1.

My Mucositis, nausea and other side effects are still very low comparatively and I’m so thankful for that.

NOW THE GREAT NEWS: I just looked at today’s CBC report (shows cell counts and minerals in blood). Since my chemo and irradiation my red cells, platelets and white cells have been falling and for the past few days have been at the bottom. I have required 2 platelet transfusions and 2 red blood transfusions. However, today the CBC showed that the red cells and white cells went up very slightly. The platelets were up, but I had a transfusion yesterday. I understand that the recovery of cell production by the new stem cells may go through some small false starts, but to see the numbers edge up is pretty cool. I hope I haven’t raised your hopes falsely, but I’m trusting that my new little cells are going and growing.

As always, thank you so much for your prayers and support.

February 6, 2007

2007-02-06T19:54:00.000-08:00

It’s already day 6 and all is well. At this point in time most patients have mucositis in their mouths and throats so badly they can’t eat because of the pain. Instead of eating they are on IV feeding. Along with mucositis they will have extreme nausea. However, I have been blessed with very mild symptoms. I don’t have mouth sores and my nausea is very controllable. All and all it has been very easy. I feel so blessed to have been spared all of the normal suffering.

It seems strange to me that I am still getting small doses of Methotrexate chemotherapy. These Methotrexate doses are 3ml and given every three days. It is used to slow down the new stem cells so they do not come in and attack my body too fiercely. The last dose will be this Wednesday. I have noticed that my nausea and mucositis gets a little worse several hours after each of these treatments.

I am at my Nadir or low point in my blood counts now. The next scheduled event is to have the new stem cells engraft and cause the counts to go up. The first evidence that the cells are engrafted should come between this Sunday and the following Thursday.

So far there have not been any Graft verses Host Disease (GvHD) symptoms. No skin rash, liver function problems or digestive tract problems. It is early for GvHD to show up. I’m praying it won’t and hope you are praying for that too. I’m also praying for the new stem cells to annihilate any possible remaining CML cells, if any. Of course, these prayers are always qualified by my desire that God’s will be done and that He is glorified.

Happy New Birthday, Art!!

2007-02-01T20:15:00.000-08:00

We now have a new Art!!! We are calling him Artina since his donor was female. He is doing as well as can be expected and is waging war with the nastiest oral medicine - we think it is winning. YUK !! He has to take it three times a day. I hope he acquires a taste for it soon.

For the next 10-14 days we will be watching for stem cell engraftment. We will continue to give you short updates.

Thank you again for your thoughts and prayers.

Barbara with Art

February 1, 2007

2007-02-01T14:35:00.000-08:00

Well, today is Art’s new birthday!!! It is 2:15 in the afternoon, the stem cells are here and as soon as he is back from radiation the transplant will start.

A blood clot has developed around the vein supporting his main line where the cells will go in and that has slowed things up but we have been reassured that it is not a serious thing at this point. He will however, be having the line removed and a new PICC line put back in his arm after the transplant is done.

Art is now feeling the effects of the chemo and radiation. He is weak and dealing with nausea yet he keeps up with his sense of humor. Marcus, Tracy, Benjamin and Terra are with us during the transplant. We are all anxious but so looking forward to having this done.

God is good He is always good no matter what we face here on this earth. We are blessed to know that He is the giver and sustainer of life.

Barbara with Art

January 30, 2007

2007-01-30T15:53:00.000-08:00

I am half way through the radiation treatment now. No skin has fallen off and I don’t smell BBQ so I guess things are going pretty well. We are at day -2 and Thursday is still planned for Day 0 when the stem cells should be arriving.

Yesterday I battled nausea with medications and slept most of the day. Today they have cut the meds in half and I am feeling much better. Barbara and I even walked half way across the OHSU sky bridge took a seat and enjoyed the view before we walked back to my room.

Just wanted to let you know that I am still with you all and doing better than most – what ever that is! ! !

So thank you again for your prayers and I will let you know in a couple of days how I am doing.

Through Barbara’s nimble fingers, Art

January 28, 2007

2007-01-28T17:21:00.000-08:00

Well it’s day -4. I have finished my two rounds of chemo and I’m glad that’s all there is. Tomorrow I start my Total Body Irradiation (TBI), which will last two times a day for the next four days. On Thursday February 1 shortly after my eighth TBI I will receive my new stem cells which could be between 10:00 p.m. and 1:00 a.m.

I am not feeling too badly. In fact I was on the treadmill and walk ½ mile at 4degree incline. Pretty good huh? I was feeling real proud of myself until the nurse told me that I wouldn’t feel the majority of the chemo effects until next week. Oh well I will enjoy every minute I can.

I feel like the Apostle Paul because although these are my words, Barbara is my scribe at this time. Either Barbara or I will keep sending you brief and frequent updates as this process progresses.

We still appreciate your prayers, Art and Barbara

January 24, 2007

2007-01-24T15:52:00.000-08:00

I just heard from OHSU and I will be admitted at 10:00AM on Friday to have a central line put in my chest. They will also remove the picc line from my arm. From there I will be admitted into oncology where the games begin. I don’t know when the chemotherapy will start, but it will be either that afternoon or the next morning. I’ll keep you posted on what happens.

Here* is a great article from Scientific American that explains why the discovery of Gleevec is so important. Stem Cells are being more closely monitored and believed to be the source for all types of cancers. Once a stem cell mutates, it can reproduce itself with the mutation and even become a malignant tumor. Don’t feel like you have to read the article. There will be no test.

*Note: Please try again tomorrow if the article is unavailable. Just FYI, each download uses about 2% of the total available daily bandwidth.

January 22, 2007

2007-01-22T07:42:00.000-08:00

Well this was to be the day I was to be admitted to OHSU to start my conditioning for the transplant. However, due to some logistics and donor size, I will be going in this Friday, January 26th, instead of today. However, the scheduled transplant date is only 1+ days later than previously scheduled.

The donor is a smaller female so my larger than normal size will require two consecutive days of collection of stem cells from her, instead of one day. Also, she is European and lives in an area where there are no departing flights available except in the mornings. Instead of shipping the product (product is the official name of collected stem cells in a bag) immediately after collection, the product will be couriered out on the first flight the next morning.

Those schedule changes for the donor have caused changes in my preparation regime. Typically I would have had 4 days of TBI (total body irradiation) before having 2 days of Cyclophosphamide chemotherapy. After the chemotherapy I would have “rested” one day to allow the chemotherapy levels in my body to drop so that the new stem cells would not be damaged by the chemotherapy drug. TBI must be done on 4 consecutive week days and is not done on weekends.

If I were administered this regime, then the timing of my European donor would have required me to “rest” for 3 days before the product arrived. Resting with no live cells is not the best. By delaying the start of my regime and reversing the regime I will receive 2 days of chemotherapy over the weekend first, followed directly by TBI, followed directly by the transplant. The “rest” time for chemotherapy will happen during TBI and no rest time is required after TBI before receiving the product.

I know this is a long explanation of why my admission date has been changed. By giving you more detail I am hoping that your disappointment is kept at a minimum. The delay is actually a blessing in that it cuts my hospital stay by 3 days while only delaying the transplant by one. Now I can be home to celebrate Barbara’s birthday this Thursday.

Thanks again for your prayers and support. We are getting there. I know it feels like one step forward and two steps back. However, I believe it is in God’s perfect timing. Although His timing is perfect; it requires that He is control, not us. I don’t always like that but it is best. ONLY GOD

January 17, 2007

2007-01-17T19:48:00.000-08:00

I have some late breaking news. As I was getting my bone marrow biopsy today at OHSU, Noreen from the transplant coordination team came in with the news that Donor 2’s final report just came. This is the donor from the international registry and the best choice because she has had no children. All of her tests are complete and indicate that she is a great match for me (in a stem cell sort of way). Dr. Mauro wants to double check all of the test results, but I’m pretty sure that I will be admitted on Monday, Jan 22, 2007, to start my transplant preparation regime. Donor 2 is scheduled to be at the collection facility, which is near her, on January 30-31. I will receive her transplant cells within 24 hours of collection. I should be out of the hospital in 6-8 weeks and on my way to a long recovery.

Besides getting another bone marrow biopsy this afternoon, over the past 4 days I have received chest X-Rays, an EKG, pulmonary function tests, a MUGA (pictures of my heart with nuclear medicine in my blood stream) and a lot of blood work including an infectious disease exposure panel. These tests are used as bench marks to help monitor negative side effects of any GvHD, Graft versus Host Disease. I had all of these tests in December to prepare for donor 1. Because these tests have to be completed less than 30 day prior to transplant, it was necessary to repeat them all for Donor 2. I am really glad they are all done.

I am not looking forward to undergo harsh chemotherapy in conjunction with full body irradiation to destroy all of the leukemia stem cells in my marrow.

However, that is necessary to finally eliminate them. Should there any stem cells remaining after that, the donor stem cells will eradicate them. At least that is the plan. Of course, God must allow success of the plan or it won’t happen.

Again I thank you all for your prayers and support. It has been a long journey so far (241 days), but finally the time for transplant is here. With your prayers I am confident I can get through this time. On several occasions doctors and nurses have expressed amazement that I have done so well. I have been able to smile at them and explain that I serve a great God who is apparently not finished with me here yet. Some believe and others are suspect. However, they all have listened and considered that truth. It is my sincere hope that each of them and each of you are closer to God now than before.

January 10, 2007

2007-01-10T21:07:00.000-08:00

I have recovered from the second round of chemotherapy pretty well. My counts are on the low side of normal. But they are good considering that Dasatinib suppresses the marrow while suppressing the leukemia. It has been 234 days since this all started in May so Barbara and I are ready to move on to the only medical cure to my leukemia, a stem cell transplant. Of course God can miraculously heal me if He so chooses. However, He has not chosen to do so yet.

I just heard today from OHSU that the second donor has been through her final medical tests and she is good to go. The third donor has supposedly gone through her medical tests also. However, she is in Europe and communication from the donor registry that represents her is slower than the National Donor Registry in the US. The plan is for the doctors at OHSU to screen the results of both active donors’ tests and choose the best one. I am scheduled to be admitted into OHSU on January 22nd for preparation for the transplant. This is the closest I’ve been to actually getting admitted for transplant. Again, Barbara and I are waiting to see if everything actually turns out this time.

Because sufficient time has elapsed since the first donor became ineligible, I am being scheduled next week to go through a lot of tests again. A stem transplant requires that many tests be done within a few days prior to transplant so that accurate benchmarks are established.

I have really missed being able to see you all. Hopefully, I will again be able to get out in public in a few months and catch up then. I am hopeful because I serve a great God who has continually blessed me more than I can imagine. I don’t want to plan anything outside of His will. My prayers are still that His will be done.

January 2, 2007

2007-01-02T20:25:00.000-08:00

I hope you all have had a great holiday season. Christmas is a wonderful time to remember God’s gift and celebrate life with those who are closest to us. Since my Nadir (time of lowest blood counts after chemotherapy) was going to happen on December 25th, Barbara and I celebrated our Christmas a week earlier than most of you. We had a great time with family on December 16th and celebrated by ourselves on the 25th.

This is my first CML update of the new year. My chemotherapy from December 11-16 went better than expected. Side effects were minimal. My blood counts have been rising slowly since my Nadir. I only had 3 transfusions of platelets and no red blood transfusions before my counts were high enough to stop the need for transfusions. That was much better than the first chemotherapy.

Barbara and I are still under the assumption that I will be admitted for preparation for a stem cell transplant from donor #2 on January 15th and will have the transplant on January 22nd. The last time my OHSU doctor and I spoke about tentative dates was mid December. That is why I said “assumption” earlier. Barbara and I are preparing for January 15th, but are leery because of donor #1 becoming ineligible at the last moment. God has been in control of this process and if I am to have a transplant, it will happen in God’s timing. Barbara and I are both trusting that God is in control and that His timing and outcome are always the best.

On one hand I am truly thankful that I am still alive since I am one of the first people who have been in blast crisis to have the CML go into remission and not have any evidence of blast cells in my marrow. That is a miracle compared to the previous outcome which was imminent death. On the other hand it has been 226 days since this process started last May and I am no closer to getting rid of the CML than when we started. Barbara and I both have been anticipating going through the transplant process and it seems like such a long time to get to that point. Waiting has been hard and we are ready to get on to the 100 days of recovery that a transplant requires. As soon as I hear more about transplant timing I’ll let you know.

Although I want to get started on the transplant, I am also apprehensive to proceed. My greatest concern is graft versus host disease (GVHD) which is a byproduct of a transplant. There is no way for doctors to determine how severe GVHD will be between any donor and recipient. GVHD is something that only God is able to control. Although God has been incredible so far in the way He has protected me, I am nervous about what God is going to do regarding GVHD in my transplant.

As always, I covet your prayers. They are a great source of strength and comfort for Barbara and me.

December 13, 2006

2006-12-13T16:21:00.000-08:00

It is day 3 in my 5 day spa experience at this all inclusive health club (Kaiser Sunnyside). I thought there was going to be champagne and gourmet food. All they have here are strange drugs and food that makes airplane food taste like gourmet.

The chemo is going well. I’ve had the 2 doses of the most toxic one and I’m starting the third dose of the 24 hour infused one. Side effects have been minimal and I’m praying they stay that way. My blood counts are holding better than at this point in the first chemo round. I guess that is because I started this round in better shape than last time.

As always, I appreciate your prayers and support.

For those of you who haven’t been sent this, check it out with speakers. If you get a “can’t find this page” message, try again. It may be using too much bandwidth from a large number of hits.

December 10, 2006

2006-12-10T18:55:00.000-08:00

Well things have changed again. Last Friday afternoon I received a call from Kelli, transplant coordinator at OHSU. Donor #2 and the stem cell collection facility near her have come up with January 15-16 as the soonest dates available. So it is planned that I check into OHSU on January 8th for pre-transplant chemo/radiation and receive my new stem cells on January 16th. For over 7 months we have been in a holding pattern as we have been waiting to get ready for transplant. It is great to finally have a date that will signify the start of the long process of finally getting rid of leukemia permanently. Because donor #1 didn’t work out at the last minute we are hopeful of the new date, yet apprehensive to get too excited.

I also received a call from my oncologist with some news I didn’t want to hear. The transplant on January 15-16 is too long to wait from the chemo I had three weeks ago without receiving additional conditioning chemotherapy. I will be checking into Kaiser Sunnyside tomorrow (Monday) for 5 days of conditioning chemo. My last chemo had two chemicals with 3 days of one and 7 days of another. Next week I will have 2 days and 5 days of the same two chemicals. The dose is smaller so the effects should be less also. (I hope, I hope, I hope)

I have been feeling really good the past week or so. In fact, I feel better than I have for about 7 months. It is hard to think about giving that up to the effects of chemotherapy. Knowing what I am going to go through makes it hard to accept. I can only wonder what Jesus went through on His way to the cross. He knew what was in store for Him, but all He said was “If it is possible, let this cup pass from me. Yet, not as I will but as you will.” Some day I hope to be that submissive. Right now I’m trying not to grumble too much.

December 7, 2006

2006-12-07T10:58:00.000-08:00

Only 18 shopping days left until Christmas, 211 days since we started this CML adventure in May and who knows how long until a stem cell transplant happens. On the transplant note, I talked with Kelli, my transplant coordinator at OHSU, yesterday. She received confirmation that donor #2 is on board and excited to proceed. Nearly all of the blood/medical tests are completed and donor #2 is just as good of a match as donor #1.

Scheduling is still unsure because Donor #2 has recently started a new job and is trying to schedule days off with her new boss during this holiday season for collection of the stem cells. Also, the collection center near Donor #2 needs to have dates available. I am pretty sure that Donor #2 lives in the USA so I don’t have to be concerned about developing a British accent later as with donor #1.

The good news is that my leukemia is still under the radar and staying down well. If the transplant happens before or near the first of next Month, it appears I won’t need more conditioning chemo before getting the preparatory chemo for transplant. I’m very thankful for that and praying that donor #2’s boss will give her time off.

Barbara and I are so thankful that we’ve able to get out of the house a few times over the past week (besides the normal clinics and doctor visits). We made a short appearance at Thanksgiving at Benjamin and Terra’s (my youngest son and daughter). We stayed for less than an hour, but it was great to see my close family together, even for a short while.

Then last Friday we were at their house again and I was able to hold a dear little boy, Jay, for quite a while. For those of you who don’t know, Jay is the son of some dear friends. He is a 5 month old boy who was diagnosed with cancer on his little ankle soon after birth. After several rounds of chemotherapy and two surgeries that removed Jay’s leg to the knee, Jay is doing well and cancer free. Jay and I shared a great bond of going through the same kind of stuff, although at only 5 months Jay has endured much more than I. Jay took to me right away, probably because we both were nearly bald. Maybe he just thought he was looking at himself in the future.

Holding Jay was great for me. He gave me a real attitude adjustment. As with me and my journey, there has been a mighty outcry to God through prayer for Jay’s healing. I was able to hold Jay because God chose to spare his life. Jay was so happy and full of life in spite of his recent ordeal. He gave me incentive to follow his example by being grateful for life and sharing that life with so many people who care for me, just as I care for them. After all, isn’t that what following Jesus is all about, loving Him and loving those around you?

It’s my Christmas wish that in some small way I can help you all remember that relationships are what really matter, not jobs, projects or stuff. In the holiday season the world will try to convince you else wise, but things do tarnish and jobs do go away while relationships will always matter.

November 27, 2006

2006-11-27T01:15:00.000-08:00

Well this is an update with mixed news. First, the good news then the news that is a setback, but certainly not a deal breaker. I wish I would only have good news for you but life just isn’t always that way. We live in a broken world and stuff breaks.

The good news: Dr Mauro from OHSU called last week and indicated that the initial results of the bone marrow biopsy revealed the best possible situation. The leukemia has been reduced by the chemotherapy to a very, very low level. The marrow shows remnants left by the chemotherapy, but no newly forming leukemia cells. That is great news because it means that there will not be any more conditioning chemotherapy needed if the stem cell transplant is done in the near future. I’m at the best place possible to ensure the best chance at success with a transplant.

The not so good news: I just received a call from Kelli who is the donor coordinator at OHSU. Kelli just received news from the British Bone Marrow Registry that the donor, who was activated and ready to give me his stem cells, is “no longer eligible to be a donor”. This is a standard message that is used when the perspective donor has shown to have a medical reason to be disqualified. It is also the message that is used when the donor has decided not to continue for personal reasons. In other words, it is the message for any and all reasons given, but the fact remains that I need a new donor.

The good news is that I have another perspective donor with the exact same match as the first donor. This donor has undergone much of the testing necessary, but more immune system testing is needed. There are also two other donors who have completed less testing but also appear to be great matches too. Kelli is now actively pursuing them as potential donors too. Because of the withdrawal of my original donor I will not be going into the hospital this Friday to begin the transplant process. The earliest date a transplant can be started with another donor will be sometime in late December (if all things align perfectly).

As mentioned above, my recent chemotherapy was successful in placing my leukemia into full remission. Now it is a race for time. Unless a new donor is qualified and a transplant date is set very soon, I may need to have another round of conditioning chemotherapy. Chemotherapy will be necessary only if the leukemia rises to a level above 5% in the marrow. The leukemia will come back at some time and the longer the time, the greater the chance that it will be above the acceptable level in the marrow for a transplant. Extra chemotherapy is not my first choice for a Christmas present.

Apparently the first donor wasn’t the right one. Please pray that God leads us to the right one soon, if that is His will.

November 21, 2006

2006-11-21T12:11:00.000-08:00

Well it doesn’t seem like it but today is the 194th day of dealing with my leukemia since the blast crisis began last May. In a lot of ways it has been life changing. I have not been able to work routinely, my physical and mental health has gone up and down with the varying treatments and my dependency on God’s grace, joy and strength has been deepened immensely.

Thank you so much for going on the journey with me. Your prayers, supportive comments, visits and/or cards have really lifted me.

Since my chemotherapy 3 weeks ago, my blood counts are coming back up and the leukemia is seemingly in remission. The leukemia being in remission is crucial to getting the stem cell transplant. Yesterday I had another bone marrow biopsy that will confirm remission and keep the clock ticking for my transplant.

If everything continues to go well, I will be checking into OHSU on December 2nd to prepare with chemotherapy and full body irradiation for the stem cell transplant. I will receive the donor stem cells on December 8th. These dates have been confirmed and were scheduled because December 7th is the first date available at the stem cell collection facility where the donor lives (I think he is in Great Brittan somewhere).

It is interesting that a courier will be waiting at the collection facility to hand carry the stem cells in a small cooler by taxi, on various airplanes and by another taxi in Portland. He will deliver the cooler directly into the doctor’s hands at OHSU. Flights, backup flights and alternate routes have been setup before hand in ensure that the stem cells make the trip in a timely fashion. There is a 24 hour time limit from when the stem cells leave the donor until they must be transfused into me.

Every doctor visit Barbara and I find out more about what to expect and what the transplant process will require me will go through. The first 100 days (or more) after the transplant are critical. I will be in the hospital at least 28 days and probably more. After I’m out of the hospital I will be going to OHSU from 3-6 days a week for the next few months to receive anti-rejection and other medications. Each transplant recipient reacts differently to the transplant process and there are only some wide guidelines for recovery because of such varied reactions.

I know that you are very busy and this is a busy time of the year. However, I am hoping you will continue to pray for me. God has been very close to me during this journey and I’m confident your prayers have contributed to His closeness. Thank you again.

I hope you all have a great Thanksgiving this year and that the relationships with your family and friends are the best ever.

November 12, 2006

2006-11-12T09:09:00.000-08:00

This has certainly been a long journey. Since we drove back from California to be admitted last May it has been 184 days. Thank you for going along with me. Your support and prayers have helped make it bearable.

On November 5th my temperature had slowly risen to 102.4 so it was off to the hospital again. I have been admitted at Sunnyside oncology since the 5th and am going to be released today. In the hospital my temperature stayed around 102 to 104+ from the 5th till the 9th. By taking blood cultures the docs found that I had contracted a common strain of strep bacteria. After a few days of IV antibiotics the fever broke and the strep was gone. I will be finishing the IVs at home so Barbara and I will be taught proper PICC care and how to do the IVs before we can leave today.

My white blood counts are starting to climb. That is such a relief. I have had an ANC of 0 for many days. In the past 4 days it has risen to 396. Since the counts are rising, my sore mouth has gotten so much better and it is such a blessing to be able to chew and swallow without pain.

Now what? So now it is trying to stay healthy to keep the stem cell transplant on schedule. I will need to make up some labs and tests that were scheduled last week and complete other tests scheduled next week. Like a marathon runner my focus is set on race day, for me race day is transplant day, which is 12/1 or 12/2.

I have found that is best for Barbara and I to intimately learn what the individual steps are as I go through them. If we start dwelling on how much is left to be done, then we are overwhelmed. The mantra of take one day at a time has been one we have adopted for this process.

God has been so gracious to me through this. Again, I’m going home and have been home since chemo. The kind of chemo I had usually leaves people in the hospital for weeks. Since I don’t know much about the different medical processes, I rely on the nursing staff to give me what they normally see. They are the ones who are surprised to see me in the relatively good condition I’m in. ONLY GOD

November 3, 2006

2006-11-03T07:46:00.000-08:00

Well, I’m pretty sure that I’m at my Nadir (lowest blood counts of this phase of chemo). I’ve been getting platelet transfusions every 2-3 days and red blood transfusions every 4-5 days since I left the hospital.

Hopefully transfusions will go away soon as I’ve been using injections of Neupogen and Procrit to jump start my marrow. The low counts have caused mouth sores and a real lack of energy. I’ve gone from couch potato to bed potato. Having the stem cell transplant date settled has been huge for me. I feel like I’ve gone from being on eternal hold to being able to see the end of the process. The transplant is an ominous concept but it is the best treatment short of a miracle healing by God.

The big news is that my stem cell transplant date has been firmed up. Unless something big changes the dates, I will be going into OHSU the Monday following Thanksgiving to start a regime of chemo and full body irradiation to prepare me for the transplant. My donor will be getting prepared that week also. The collection of stem cells from the donor and infusion of those cells into me will be around December 2-4. Barbara and I both are approaching this transplant completely relying on God to get us through it.

My emailing ability will be limited for the next 5 or so days. The CPU fan in the laptop failed and it is going in for repair. The laptop is my primary computer so I’ll be “off line” for a bit.

Thanks again for all of your prayers. This has been a long journey; a journey that I wouldn’t have ever chosen, but it has been rich with spiritual growth and relational benefit. I thank God for his grace and mercy. I also thank Him for all of you.

October 27, 2006

2006-10-27T10:23:00.000-07:00

Today has been just great. It has to be from all of our prayers lining up with God’s will. That is all I can figure.

I’ve been asked several times what the difference is between chemotherapy and the Gleevec and Dasatinib. There is a definite difference and I’ll try to explain it in a couple of ways, one way for the normal people and another way for those technical geeks.

Remember that I’m a newbie to the medical scene so this is all fabricated out of what I’ve picked up in conversations with medical personnel. It is frustrating because in one sentence they are all called chemotherapy and the next sentence they are definitely referred to as different and unique to each other. Don’t worry. There will be no tests and the explanations are not guaranteed to be accurate or complete and come with no warranties implied or expressed.

CHEMOTHERAPY VS GLEEVEC AND DASATINIB – FOR NORMAL PEOPLE

Let’s say you have a sick cow and you don’t want the sickness to kill the whole herd. Using chemotherapy is like rounding up the herd into the barn, tossing in a hand grenade, closing the barn door and sorting out what lived after the explosion. Gruesome but effective if the hand grenade is closest to the sick cow.

Using Gleevec or Dasatinib is more like rounding up only the sick cow and using a small bore handgun to dispatch the sick cow.

CHEMOTHERAPY VS GLEEVEC AND DASATINIB – FOR TECHNICAL GEEKS

Chemotherapy uses cytotoxicity to perform its therapy. Cytotoxicity simply means the drug(s) are toxic to cells. Chemotherapy uses a broad brush stroke to negatively affect all cells. Through experimentation doctors have found which drugs are most toxic to which type of cancer cells.

The reason that people lose their hair, get ugly mouth sores, have stomach lining problems and skin conditions due to chemotherapy is that chemotherapy tends to affect those faster growing and dividing cells, like in hair follicles and mucus membranes. Since cancer cells are very active they are affected by the drugs also. With chemotherapy you affect (kill off) a bunch of cells and hope the cancer cells all go away before the toxicity causes permanent and catastrophic damage in too many good cells.

Gleevec and Dasatinib are called Targeted Therapy (at least for now until a better term comes up). Instead of using cytotoxicity as the method for response, they use cytogenetics. Cytogenetics is where the drug is specifically targeted to interrupt the signaling process of the cancer cells within our bodies and not use toxicity as a means of effect.

In CML leukemia the cancerous cells put out a bad protein called BCR ABL. This protein causes some DNA in normal white blood cells to change position. Gleevec and Dasatinib target the CML affected cells and stop them from emitting the BCR ABL protein. Lowering that BCR ABL protein level in the bone marrow stops the swapping of DNA in more normal white blood cells.

The problem with narrowly focused targeted drugs is that cancer cells are pretty smart. In order to survive they mutate out past the effectiveness of the drug until they become resistant to the drug. That is why Dasatinib was produced to help those of us whose cancer cells have successfully mutated past the effectiveness of Gleevec’s range. Targeted therapies are definitely much safer and less damaging to our normal body cells.

October 26, 2006

2006-10-26T10:17:00.000-07:00

Well it’s Thursday morning, October 26th and I’m still at Sunnyside hospital. My blood counts are very low now and I’m neutropenic again (very susceptible to catching viruses, germs and fungi). The staff has changed my anti-nausea medicine to a regularly administered dose in my PICC line and I am hoping that continues to work this well.

I don’t know if it is harder being really sick and in the hospital or if it is harder feeling good and being in the hospital. When I’m sick, the time has to pass somewhere and the hospital is as good as any place. When I’m feeling good and in the hospital, it has the feeling of being in prison or locked up somewhere. Oh well, I’ll just continue to rest in the Lord’s hands and see where He is taking me. I’m so thankful of His presence here.

I’m coming into the time of the chemotherapy process called the Nadir (pronounced ney-dur). This is where my blood counts are the lowest and there is the highest concern with infections and catching something. The Nadir can last 2 or more weeks and during that time I will have many red blood transfusions, platelet transfusions and watched closely for fevers. Each person is different in their response and the Nadir time could be much shorter too. It is again another door to go through in the maze of treatment.

Thanks again for all of your kind thoughts and prayers. They are continually felt and appreciated.

While you are praying, there is a little 4 month old boy with an extremely aggressive cancer attacking his little body. A large tumor on one of his ankles has necessitated the removal of his leg. Please pray for little Jay. He is such a sweet baby and in the midst of all of his pain and trauma, there is still a big, big smile on his little face.

October 21, 2006

2006-10-21T21:25:00.000-07:00

Well the hard and heavy stuff has started. I was admitted into Sunnyside Hospital last night to begin chemotherapy today. I will be getting a total of 3 doses of Idarubicin which is infused into a new PICC line they inserted in my left arm yesterday. I will also be getting 7 doses of Cytarabine infused into the same PICC line over the next 7 days. The Idarubicin is infused over 20 minutes and the Cytarabine infuses in the same PICC line continuously over 24 hours for the next 7 days.

Of course I can’t do things normally. I will be continuing the Dasatinib during the chemo phase. No one has done this yet in the Kaiser or OHSU systems. The theory is that the Dasatinib will be helpful in getting a good remission from the chemo with little or no additional side effects. This is theoretical since there is no data to prove that. The only likely additive side effect is the buildup of liquid in the chest cavity, which can be threatening to heart function. Excess water is very easy to detect and they are watching that side effect closely.

Here’s a list of some milestones for the next few weeks according to the plan of the doctors.

1. Within 2-4 days I’ll be neutropenic (easily susceptible to viruses, bacteria and fungi infections). All chemo has a Nadir time which is where the blood counts are lowest. Since the Dasatinib has suppressed the counts already, My Nadir time is from day 2-4 until day 7-9, instead of from days 5-9.

2. My chemo regime will stop in 7 days.

3. A bone marrow biopsy will be done on the 14th day to see the effectiveness of reducing the leukemia in the marrow. Normally there is a 50% chance of good, controlled remission. Since I’m also continuing the Dasatinib during the chemo phase, the 50% should be higher but there is no data to support that.

4. My hair will probably fall out between days 17-20. Apparently it comes out all at once on this stuff.

5. My marrow will be rebuilding during weeks 2-3. Hopefully my strength will improve somewhat during that time. The additional strength will be helpful during the stem cell transplant.

6. I will start the chemo that prepares me for the transplant in 3 ½ weeks. From what I understand there will be 2 days of chemo then that will totally clear (kill off) my marrow and any remaining leukemia.

7. The stem cell transplant is tentatively scheduled for 4 weeks from today. The donor has been contacted to see if that time is OK for him. By the way, the donor is a male in his 40s, I think from Great Brittan. That’s all I know about him other than by his weight he is probably in good shape (or he has to be really short to be overweight.)

The schedule can change for a lot of reasons. The donor may be on holiday (vacation), side effects may cause the chemo to be temporarily stopped, or many other reasons.

If anyone wants to visit they should do so very soon or wait for a while. Please call me on my cell to see what’s going on before you come. No sick people please.

I sure would appreciate any prayers to get through this process. As I’ve said before, my first and highest desire is to be in God’s will. I don’t have a lot of clarity about what that exactly is right now, but I’m sure He has. I do know that I’ve been able to share my faith in and knowledge about Jesus Christ to a number of people in the medical community. That has been very rewarding.

I’ll let you all know if there are any changes. I’ll also try to continue the updates regularly as my strength (or lack thereof) permits.

I love you guys.

October 16, 2006

2006-10-16T10:04:00.000-07:00

Well, we left off in my last update where I was placed on a drug called Dasatinib because the study drug, AMN 107, quit working. I’ve been on 70mg of the Dasatinib twice a day since September 22st. People who have become resistant to the study drug (like me) have had a good response to the use of Dasatinib.

I had another bone marrow biopsy on October 11th. The preliminary results indicate that, although my blood is clearing of the leukemia, there is not much improvement in my marrow. I will be increasing my daily dose of Dasatinib from 70mg twice daily to 90mg twice daily. I’m not looking forward to this because I’ve had some pretty nasty side effects at the 70mg level.

Where do we go from here? If the higher Dasatinib dose affects an improvement in my marrow, then I’ll keep going with the Dasatinib until the leukemia is down to a level low enough to start the stem cell transplant. If not, then the only option left is chemotherapy. We should know in 2 weeks which option is next. The doctors are not going to waste much time on the Dasatinib unless there is a substantial change very soon.

Thanks for your prayers. This has been a long road and your prayers have really been instrumental in sustaining me. I can tell you from my experience that God works through the prayers of His people.

October 7, 2006

2006-10-07T09:53:00.000-07:00

Well it’s been 2 weeks since I switched from the AMN 107 drug and started on Dasatinib (Sprycel) by Bristol-Meyer Squibb. This drug started out with some pretty harsh side effects and those side effects have not let up. It seems that each successive drug I’ve taken is worse on me than the one before.

The hardest times for me now are nights. My temperature rises to 101+, there are a lot aches and pains and my blood pressure and pulse rates get quite high. By morning most of the effects have subsided, but I feel pretty beat up. Its like I remember hangovers in my non-Christian, younger years. My best time is late afternoon and early evening. We have had friends over for dinner and it has been great to be able to just “hang out”. I love you guys and it is fun to hang out with you when that works out.

Some of my blood counts have been dropping with the Dasatinib because as it suppresses the leukemia, it also suppresses the output of the marrow. None of the blood counts are dangerously low but they are at the point where I feel pretty fatigued. I started administering Procrit shots on myself once a week and hopefully they will increase the red cells, hematocrit, hemoglobin and platelet levels quickly.

The jury is still out on whether Dasatinib is making any changes in the leukemia level in my marrow. I will have a bone marrow biopsy this Wednesday. We should have preliminary results back in 5 days from the biopsy. Those results will be important to help determine whether I stay on Dasatinib as it lowers the leukemia or whether I go straight to chemotherapy and stop Dasatinib.

Even with the side effects of Dasatinib it would better to stay on it than to have to get chemotherapy before the transplant. If I have to do a regime of chemotherapy to lower the leukemia in my marrow, then there will be a short waiting period of 2-4 weeks before getting another regime of a different chemotherapy that is necessary to prepare for the transplant. A double dose of chemotherapy heightens the probability of serious complications during the transplant process.

Oh well, God knows what is best for me and I am trying to rest in His plan. I do have to admit that I would really prefer to know what He has in mind, instead of just relying on the fact that He is in control by faith. If He can create everything we see and can’t see, then I’m confident He can handle my situation. ONLY GOD.

September 27, 2007

2006-09-27T17:28:00.000-07:00

Well it’s been 4 ½ days on the new drug, Dasatinib. There are still pretty fierce side effects so far. Since it takes a week for the study drug to reduce to 50% in my body, generally people will wait 1 ½ to 2 weeks between taking one drug and starting the other. Since I didn’t have the luxury of time, it is like I’m taking both drugs for a week. That produces more toxicity, which produces more side effects. The side effects that are hanging on are severe head ache, bone pain, muscle cramps and fatigue. Hopefully the side effects will resolve themselves as I get used to the Dasatinib and as the study drug level in my body goes down.

Just before the study drug quit working last week, the blast count in my blood was bouncing between 0% and 4%. Five days later, this Monday, the blast count was 24%. Today (just two days later and 4 days after starting Dasatinib) the blast count went back down to 4%. That is great news. The rest of my counts are also getting close to the same numbers as when the leukemia was in control for the past couple of weeks. The bone pain and resolving blood counts are probably indications that the Dasatinib is rapidly kicking the leukemia out of the marrow.

Thanks for your prayers. Many of you have expressed your concern about the facts in my last update. This update is to help you sense the positive turn of events in a very short time frame.

Thanks again for your prayers, thoughts and support.

September 24, 2006

2006-09-24T14:08:00.000-07:00

We have been so supported and blessed by you all in this trial. Thanks to each of you. Your support and prayers are very much appreciated.

In my last update my blood showed no blast (leukemia) cells and I was waiting for another bone marrow biopsy to determine the health of my marrow. On Friday, September 22nd, I received a call from my oncologist about the biopsy. Apparently the study drug has made tremendous reduction in the leukemia. However, the effectiveness of the drug has apparently ended. The marrow was hyper-cellular (packed with an overabundance of cells) for the first few biopsies. The last couple biopsies reveal a hypo-cellular (cleared out and ready to produce normal cells). The concern is that there are still leukemia cells in the marrow. Now that the marrow is cleared, there could easily be an advance of the leukemia again into the open marrow since the study drug has not removed all of the leukemia cells.

If you remember, I was nearly taken off the study drug a couple months ago because its effect on the leukemia was so slow. I was going to be placed on a newly FDA approved, competitive drug, called Dasatinib. Well I was taken off my study drug and took my first dose of that new Dasatinib drug last Friday night. This new drug is very similar to the study drug, but is different enough that there is a good possibility of success in removing the blast cells from my marrow. The doctors are not waiting a long time to see a reversal with this drug. I will be having another biopsy in a couple of weeks to determine my response to the drug.

I’ve taken 4 doses so far of the new drug and I have been experiencing some strong side effects. Normally I should have been taken off the study drug for 1-2 weeks and let it get out of my system before introducing the new drug. However, I don’t have the luxury of that time. Therefore, there is more toxicity when mixing drugs (remember the 60’s). I’m hoping my side effects will reduce as the study drug level goes down in a couple of days. I’m feeling pretty puny, like I did a couple of months ago.

There are two possible paths for my future treatment. If I have a response to the Dasatinib, then I will go directly into a stem cell transplant after waiting to see a sustained remission for a couple of weeks. If there is an insufficient response, then I will have chemotherapy to kill the leukemia and then go into the transplant process. Having chemotherapy and then getting another dose of the transplant chemotherapy has a much lower chance of success because of the added toxicity of two chemo regimes. As you can imagine, we’re praying for a good response to the Dasatinib.

I sure would appreciate your prayers. In my selfishness, I want many more healthy years with Barbara, my boys, my family and my friends. However, I am committed to be content with God’s will. If His will is for my healing, then I am happy for that. If His will is that I will not be healed and I will soon be taken from my life on this earth, then I am committed to that also. May God’s will be done.

I love you all and am so thankful for your support and prayers.

September 10, 2006

2006-09-10T16:10:00.000-07:00

Last Wednesday was a huge milestone for me. I had a CBC blood draw then and the results indicated there were NO blast (leukemia) cells in my blood. Friday’s CBC also indicated my blood was blast free. This is so incredible since my white blood cells were about 97% blast in mid May 2006. Your prayers coupled with the study drug I’m on have really done the trick. This week on Wednesday I’ll go in for another bone marrow biopsy and it is probable that my marrow will have between 0 and 1% blast cells in it. My strength is returning and I feel great. There are some side effects to the study drug, but they are easily lived with.

My Oncologist will probably talk a lot about the timing for my stem cell transplant on Wednesday. There are blood samples from two additional, potential donors that should have been processed and available to see this Wednesday. I am assuming that the actual donor will be picked this week from the two matches and the two additional donors. The actual donor will be contacted immediately to determine when he (or she) will be available.

I’m not exactly sure how long the process to get the donor and me ready for transplant will take. If circumstances take normal times I understand that the transplant will be sometime in October or early November. The doctors still are unsure how much chemo I will need to give me the best balance between minimal, long term side effects and lowest chance for future relapse of the leukemia. I’m glad they are making that decision because I don’t have a clue.

I have been telling everyone for quite some time that the plan was to find a donor and get myself down to no leukemia cells. Now that the plan is going as well as could ever be expected, I am sitting here amazed that God has been so gracious to me. It is one thing to have a perfect plan, but it is another to experience that plan working so beautifully. I, of course, am thanking God that I can have some more time with you, my family and friends. But I am also thankful for each of you who have used some your precious time to pray for and support us. God has truly blessed us with many great people in our lives.

Barbara and I have known for a while that a stem cell transplant is essential for the long term treatment of my CML. However, we have been putting off thinking about the ramifications of that process. There were so many large hurdles to overcome and we needed to focus on those first. We solicit your prayers. This transplant process is going to be difficult without a special measure of God’s peace and grace.

Many thanks for your willingness to rally round us and be our support in prayer.

August 29th, 2006

2006-08-29T19:14:00.000-07:00

Do you ever get tired of waiting around, especially when you are totally not in control and you aren’t sure of your future? That about sums up the way I’ve felt the past 2 weeks. Even though God has been very gracious to me by allowing me to get better and stronger each day, I want to take back control of my life. It has been difficult to release my will and let God continue to “drive” through this process.

At my doctor appointment today I found out that the bone marrow biopsy on August 16th showed my marrow has about 7% blast (leukemia) cells in it. That is down from 97% in May and 65% in July. When my marrow is below 5% leukemic cells, I will be classified as no longer in the blast phase of leukemia. I will be back in the chronic phase. 5% is the magic number where my transplant should be less troublesome and the likelihood of reoccurrence of CML is much less. 0% blasts in my marrow is, of course, better.

Now my doctor and I are trying to decide when the best time for the transplant will be. Waiting to get to 0% has real benefits. However, there is no guarantee that I will ever get to 0%. Waiting too long could allow me to back into blast crisis at a very fast rate. I feel like someone with the dice at a craps table who has won a great deal of money. How many more rolls should I take? I could win even more money, but I could lose it all in one bad roll. As Clint Eastwood says “Do I feel lucky?”

My blood counts are doing very, very well. My white cells, neutrophils, platelets and most other cells are in the normal range. My red cell count, including hemoglobin and hematocrit, is gaining every day and close to the normal range. My stamina is doing much better so that Barbara and I are playing some par 3 golf. After I hit an extra large bucket of balls at the driving range I’m a little pooped, but my energy comes back pretty fast.

I’m not sure where my treatment is going from here. From what my doctor and I discussed it sounds like the transplant will start in early October if everything continues as it has. There are a lot of things that have to fall in place by God’s grace before the transplant can happen. There is a great donor match for me. The match is not perfect, but it is as close as it can be without being perfect and is certainly good enough to proceed. Two more donor blood samples arrived last week and those samples are being processed. As long as I continue to get better and the decision to start the transplant hasn’t happened, OHSU will continue to search for donor matches. It is so reassuring to have a suitable match on hold.

Again, I’m just blown away that God has chosen to bless me with life when so many with my disease are dying. It is just another example of God’s grace, which means undeserved favor or blessing.

Thanks for all of your prayers. Keep them coming. They are working.

August 10th, 2006

2006-08-10T13:59:00.000-07:00

God has been gracious to Barbara and me. I am blessed to be alive, let alone to be feeling as well as I am. Last Friday I met with a different oncologist at Kaiser since my normal oncologist is on vacation. During our discussion the new doctor said to Barbara and me, “Mr. Young as short as a year ago we would have been speaking about you in the past tense in the same situation”. That was a sobering thought. I recently found that the study drug I’ve been taking has been on study trial for a short while, but I am only the second person who has entered the study at OHSU. The previous studies have been in other parts of the world. I’m pretty much following right after the monkeys.

The past 2 weeks have been great for me with a lot of energy and little side effects. As I mentioned in my 7/23 update, I started giving myself Neupogen shots. Neupogen is a protein that signals bone marrow to produce white blood cells. It took about 8 daily shots before my white count quickly rose to a level that finally stopped at twice the normal level. Now I am only taking a shot if my ANC (actual neutrophil count) goes below 500. That number of 500 is where I have to start wearing a mask and avoid people.

My last shot was on Saturday, July 29th and my ANC count is holding at about 1100-1200. I feel so much better with the more normal count. I also started giving myself Procrit shots once a week and last Monday gave to myself the second shot. Procrit is the protein that signals bone marrow to produce red cells. My Hemoglobin and Hematocrit counts are now holding pretty well too. Finally, my platelets are doing well at 185 today. All of these numbers are very low for normal people, but they are great compared to where mine have been.

I am still on the study drug AMN 107. There was a lot of discussion of changing to another therapy but my counts are improving and the percentage of blast cells (leukemic cells) in my blood has gone from 97% to about 15%. It has been a slow process to have my bone marrow clear itself of the leukemia. On August 16th I will have another bone marrow biopsy that will give a good indication of how well my marrow is clearing. It is important for my marrow to clear so the donor stem cells will have a good place to engraft when the transplant happens.

As far as finding a suitable stem cell donor goes, the first round of 6 potential donors was tested and most were not acceptable, either by not being available at this time or by not being a great match for me. There was an option where 11 out of the 12 proteins were an exact match in a donor. I have a very common HLA blood type with the exception that most people who have my type have an 03 protein in position “C”. I have an 04 protein in my position “C”. If conditions were that I needed to proceed quickly with a transplant, they could use the person with a mismatch at position “C” because the “C” position is not as critical as some of the others.

Since I have time to research more potential donors for an exact match, OHSU has asked for samples from the next round of potential donors. OHSU has determined from their experience that people with my HLS blood type who have an 04 protein in the “C” position tend to come from Great Brittan. OHSU has contacted the British Bone Marrow Registry (BBMR) and have asked for blood samples from 3 people. The BBMR is a private registry and donors did not show up with the previous search of the National Marrow Donor Registry.

When I was growing up I didn’t go to church very much. However, I did go enough to memorize the 23rd Psalm. My experience with leukemia has challenged my awareness of that Psalm and has given me a much more real and accurate idea of what it means to have the Lord make me lie down beside still waters and when I walk through the valley of the shadow of death I do not feel evil for God is with me. What a blessing.

Sunday, July 23rd, 2006

2006-07-23T18:24:00.000-07:00

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

2006-07-11T17:48:00.000-07:00

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

2006-07-06T09:49:00.000-07:00

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.

June 29th, 2006

2006-06-29T18:04:00.000-07:00

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

2006-06-26T21:26:00.000-07:00

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

2006-06-19T13:22:00.000-07:00

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

2006-06-13T17:53:00.000-07:00

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

2006-06-11T17:51:00.000-07:00

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

2006-06-07T17:50:00.000-07:00

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

2006-06-03T17:49:00.000-07:00

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!

May 26th, 2006

2006-05-26T17:48:00.000-07:00

First off, thanks for your prayers. We serve a great God and He inhabits the prayers of His people. Your prayers bring me a health and strength that is indescribable. ONLY GOD.

A lot has happened in the last couple of weeks. I’ll be brief with my update as my time is limited, but I want to get something out to you all, since many of you have heard something is going on.

My Leukemia has changed from being in a chronic phase to going to a blast stage. Blast phase is when the disease gets much more aggressive. I have started a new trial drug that appears to be controlling the leukemia and getting it back into remission (chronic phase). We will know more results in a couple of weeks, but it is doing a great job so far. Getting the disease stabilized to the chronic stage is a really big advantage in treating it.

My short term goal is to get the Leukemia into remission and get me as healthy as possible. Both remission and stabilization appear to be going well with a lot of hard work. Barbara and I anticipate getting through this phase in a matter of a few weeks. Once stabilized, then the only option for long life without constant leukemia treatment is to have a stem cell transplant. That is the path Barbara and I are choosing at this point.

Stem cell transplants are much less brutal when the disease is in the chronic stage. There is much less radiation and chemotherapy in preparation for the donor cells. The two major concerns of a stem cell transplant are infection and donor/host disease. Donor/host disease is when the body wants to reject the new cells. Both concerns are far less when the leukemia is in remission.

Please pray first for God’s will to be done. It is so hard to see His will when you are in the trenches. I feel we are doing what He wants and continually am praying that we are following Him.

Pray that this trial drug will work to a remission. Pray that a stem cell donor match will be found. I am being typed by the Red Cross now and my Sister is going in Tuesday to see if she is a match.

Thank you again for your prayers and kind words. What a blessing they are to me.

October 24th, 2005

2005-10-24T17:44:00.000-07:00

It is hard to believe but it is my one year anniversary of being diagnosed with Leukemia. God is gracious and I’m doing well. I can never thank you enough for your prayers. They are greatly felt and appreciated.

The BCR Able test is the test that indicates the percentage of leukemic white blood cells to normal white blood cells. On August 16th I had a second BCR Able test that showed a 1.5 log reduction in leukemic cells. A reduction level of 4 logs indicates complete remission. As compared to the approximate 4000 people on Gleevec, I am doing well and am in the top 50% of patients heading toward molecular response. My side effects from daily Gleevec therapy are quite tolerable with overall tiredness, muscle aches and cramps being the most challenging.

Every time I see the Doc I learn a little more about my CML treatment because the first patients using Gleevec are exposing how effective the medicine is and what treatment parameters are best with its use. I first started taking Gleevec at 400 mg per day which was the recommended dosage in Oct 2004. Now I am at 800 mg per day, the current recommended maximum dosage. With Gleevec there are three responses to be successfully “cured” of CML (chronic myeloid leukemia).

Hematological response is where your blood counts are all stabilized and within acceptable limits because of the effects of Gleevec. I cleared that hurdle almost immediately and my counts are continuing to be great. The second response is a cytogenetic response where the bone marrow stops producing leukemic (myeloid) white cells. I am progressing well to that response. The third response is molecular where no myeloid cells can be found in the blood (the test can determine down to 1 leukemic cell in 1,000,000 regular white cells). This is considered to be total remission. Time will tell how complete my response will be.

If I were now diagnosed with CML I would probably be immediately prescribed 800 mg of Gleevec daily, instead of increasing from 400 to 600 to 800 mg over the first 8 months. Logic deduces that I would be farther along with a total (molecular) response sooner at a higher dosage. I am making good progress toward a healing and at worst case can expect to have a much longer time to love my family and friends while here on this earth. My next BCR Able test is scheduled for November 8th. Hopefully, I will be closer to the 4 log level then.

I do find my attitude being challenged quite regularly. Today when my doctor said I was doing very well and that my response is consistent with the top 50% of Gleevec patients, I immediately wanted to be responding better than the top patient. Instead of being thankful that God has made this drug therapy available for me and that I am progressing well, my thoughts went to how to speed the remission process along. Instead of being thankful that God, who created this universe, has blessed me with longer life, I wanted to help Him move a little faster and do it a little better (in my not-so-humble opinion). Apparently my faith in Christ is not fully perfected yet.

I appreciate all of you and our relationships very much.

July 11th, 2005

2005-07-11T17:38:00.000-07:00

First of all, many of you have contacted me to say you are praying or with words of encouragement. Thanks for all your prayers and encouragement. Your prayers mean a lot to me and God hears them. I have been continually amazed at how I have affected people and how other people have affected me. One never knows the lives one touches until something out of the ordinary brings it to light. I am thankful that God has chosen to allow me to share life with you all for a while longer.

It has been over 8 months since I was first diagnosed with Chronic Myeloid Leukemia. I am still doing very well, according to the oncologist and all other indications. Since my last post I have been continuing on the Gleevec treatment with great results. In April, my daily dosage was raised from 400mg to 600mg. In June my daily dosage was raised from 600mg to 800mg. These dosage changes were prompted by my ability to tolerate the medicine very well and because the doctors are getting back good long term results from the first patients on higher dosages of Gleevec. Both times when my dosage was increased my blood counts temporarily dipped and then went back to their previous levels in a few weeks. Both times when my dosage was increased the Gleevec caused more stomach upset and overall sick feeling. Those symptoms settled back down in a few weeks. I still experience muscle cramping and some mild “punky” feeling, but overall the side effects have been quite tolerable.

My energy level has been relatively lower at the elevated dosages. I used to start going at 5:30am and quit at 12:00am. Now I get up at 6:30am, but even at a reduced rate of effort, my energy is pretty much sapped by 7:00pm and I’m ready for bed by 9:30pm. Slowing down has been a very hard thing for me to get used to. Again, I don’t know how much slowing down is age related and how much is medicine or disease related.

On July 18th I’m scheduled to go back for a second BCR Able test. This is the test that measured the percentage of leukemic white cells to normal white cells. The first BCR Able test I had after three months of treatment showed a reduction of 1 log leukemic cells. I am curious to see the results of the test on the 18th. My prognosis is good when you look at the success rate of the 3600 people using Gleevec for about 48 months now. I am responding well so it makes sense (God willing) that I will have long term success over the CML.

Here is an article about the effectiveness of Gleevec.on patients tested so far: Oncology - Leukemia News

Thanks again for your prayers.

March 2nd, 2005

2005-03-02T17:34:00.000-08:00

First of all, thanks for all your prayers. Please continue. They are working.

I don’t have a lot to report, other than I’m still feeling good, most of the time. There is an occasional queasiness or muscle pain, but the muscle pain is likely to be the “getting older” thing. My stamina isn’t what it used to be (or at least what I remember it to be). Again is that getting old or a side effect of the medicine? I don’t see many other guys my age playing in basketball leagues or bull riding.

On January 25th I had blood drawn for the first test to see how well the Gleevec is working to reverse the chromosome DNA back in the Leukemic (Philadelphia) cells. I’ve been waiting for a long time for the test results. I was first told that I would have results in 17 days. However, it takes about 5 weeks for results on this particular test. Yesterday the oncology department left a message with the initial results. There is a “log” reduction in the count of Leukemic cells relative to normal white cells. That is good, I guess. In my distant memory of mathematics courses, logarithmic scales are used to show major changes without the difference in the numbers getting huge or miniscule. I have an appointment with the oncologist next week for a thorough interpretation of the test results.

Sorry for those of you who have asked for an update. I was waiting for the test results because everything else has been the same since the last one in January. I’m feeling good and my blood count is holding steady at great levels. I’ll let you all know the official test results next week.

It is still amazing to me how a health issue can so radically change the way a person perceives life and their own priorities. I’ve had the opportunity to talk to several people with health challenges and the all have experienced changed thinking. I am equally amazed that the people I’ve met haven’t changed their thinking in the same way as me or each other. I think the single most identifiable factor I’ve found in a person’s response to adversity or disappointment is their faith.

Thanks again for your prayers. I’ll write again soon.

January 17th, 2005

2005-01-17T17:32:00.000-08:00

First, thanks for all of the prayers. I have never experienced the power of prayer like I have during this leukemia saga. I had often read how God works through the prayers of His people, now I know a little better first hand what that means.

Sorry I haven’t written in a while. As they say, no news is good news. My CBC (complete blood count) tests have been great. All of the blood components are normal and holding steady. Looking at the last test results would make one think there was no problem at all.

I am going in this week to start testing for the second stage of response to the Gleevec medicine. It is called the Cytogenetic response. They will start monitoring me to see if the percentage of leukemic cells is going down compared to the regular white cell count. The testing will continue until either they cannot find leukemic cells or until the ratio doesn’t change anymore. This phase of testing could last 6-9 months. I’ll let ya’ll know what the test is like and how I’m doing.

December 3rd, 2004

2004-12-03T17:25:00.000-08:00

It has been a quick 6 weeks and I just saw my oncologist. Everything is going well. My spleen and liver were enlarged when first diagnosed and both are nearly normal now. I feel good and have had only very mild side effects to the Gleevec (wonder drug chemotherapy). I have been asked by my doctor to conduct an experiment. I am to slowly drink part of a beer to test the effects of alcohol and Gleevec. I could be selected for a worse test, huh. I wonder if I can get medical beer, like some patients get medical marijuana….

God has been so gracious to me. I am, of course, thankful for the prognosis of having a lot more time with you all than I first imagined. However, I am just as thankful that God’s peace has been so comforting. I am experiencing what I have read in scriptures about a peace that surpasses all understanding.

Thank you so much for your prayers. I’ll keep you all informed in any unusual things. However, there might not be any news before my first Cytogenetic response test on January 17th.

Here is where I am in my process for those who like details:

If you remember, there are three levels of response to Gleevec for chronic myeloid leukemia patients. I am very close to a successful first response, a hematological response. My blood count is nearly normal for all components. The platelets (they cause clotting to happen) are slightly low as well as my hemoglobin (the part that collects oxygen from the lungs and takes it out to the rest of the body). They should be normalized in the next week or two. As long as the white cell count does not climb again, which according to the doc would be rare, I will have achieved the first response.

I am progressing toward the second response, a cytogenetic response. This is where the Gleevec will reverse the DNA transfer so that my white cells will be produced as normal, instead of with the Philadelphia chromosome. I will have my first check to see how I am approaching this response on January 17th. It is common for this response to take 4 months to 12 months and to determine how effectively Gleevec is going to work. I can either respond by having Gleevec keep the ratio of leukemic cells to normal cells low and stable or I can respond by having no leukemic cells present, a complete cytogenetic response. If I have a complete cytogenetic response, then I’m on to the final response tests.

November 18th, 2004

2004-11-18T17:16:00.000-08:00

First, I need to thank God for the peace and hope I have. It is truly a miracle to be so reassured in a difficult time. I also want to thank you who are praying for me. It is evident that God is working through the prayers of His people.

When originally diagnosed, my white cell count was 171,000. At the last update on 11/3 my white cell count was 70,000. My white cell count on 11/9/04 was 13,500 and on 11/16/04 was 4,500. I‘m normal for white cells. My red cell and platelets are approaching normal. Since my hematology was so improved, I am no longer taking the Hydroxyurea or Allopurinol.

The only medicine I am currently taking is Gleevec, the wonder drug that targets only the leukemic white cells. A good sign that the Gleevec is working on the leukemic cells is the fact that I had about 3% blast white cells when originally diagnosed. The 11/16/04 blood test showed no appreciable number of blast cells. Blast cells are immature leukemic cells and the number in the blood indicates how accelerated the CML is getting.

The blood tests I am now taking are called a CBC test. Its ability to detect blast cells is not as good as other tests so the actual number of blast cells in my blood is not known. However, the number is less than the CBC test can detect and less than what I started with. The Dr was surprised by how fast my blood count is correcting. This is a good sign. I will have to wait a few weeks (or months) longer to find out how well the Gleevec specifically works on me.

I have been very blessed so far by no appreciable side effects from the chemo. It is pretty cool the way Gleevec has so greatly affected the treatment of CML.

November 8th, 2004

2004-11-08T17:05:00.000-08:00

For some of you this is the first time to hear this news and for others it’s an update. On October 22th I was diagnosed with Chronic Myeloid Leukemia (CML). Leukemia means it is a type of cancer that affects the blood. Chronic means that the disease progresses slowly. If I had Acute, then the disease would progress rapidly. Myeloid is the type of blood cells that are being produced in too large of numbers. The white cells in a CML patient have the Philadelphia chromosome. That is where DNA is switched between the 9th and 23rd chromosomes.

First of all, for those of you who have been praying for me, THANK YOU. I have been intimately sensing God’s presence in this process. The peace I have felt, even from the initial phone call at midnight when I thought death was imminent, is surreal. If you want to pray for me, pray that God’s will be done and if that can happen by me being healed, then that would be great. I have known for a long time that we are all in God’s hands and He controls the number of our days here on Earth. That truth is a lot more evident to me now.

I started chemotherapy on the 23rd with Hydroxyurea to lower my white blood cell count. My count was 171,000 where a normal count is 5,000 to 10,000. The doctor added Gleevec on the 26th, when the diagnosis of CML was totally confirmed. Gleevec is new wonder drug that OHSU helped develop from 1999 to 2001. In 2001 it was released by the government as a treatment option for CML patients.

On Tuesday (11 days after diagnosis), my white cell count was below 70,000 and I have begun phasing off the Hydroyurea. I started with 8 capsules a day and am on 4 capsules a day currently. Gleevec will maintain a normal white blood cell count by itself soon. I will not know how well I am responding to the Gleevec for 3-6 months. I may be able to stop taking Gleevec in a few months or I may have to take it for a long time.

There are three phases of response I can have toward CML from my treatment. First, Hematological Response happens when the blood count gets back to normal so I can feel normal again. That is happening already. Secondly, to prolong my life there will need to be a Cytogenetic Response where the abnormal chromosomes start disappearing and normal white blood cells are being produced.

The final phase is the Molecular Phase where less than 1 Leukemic cell is found for over 1 million normal cells. Over 40% of patients using Gleevec have great chromosomic response. I’m hoping to be in the top 40%, but there is no studying for this test. It is all in God’s hands. Prior to Gleevec, the only option for prolonged life when CML was diagnosed was a bone marrow transplant. In patients my age there was a 40+% mortality rate due to the harshness of treatment and complications. Gleevec seems like a great alternative to me.

Even after 2 weeks of chemotherapy, I am feeling great, besides feeling a little tired. Both types of chemo drugs are taken orally and I have been spared the typical side effects of nausea, diarrhea, hair loss and loss of appetite. The doctor laughed as he said that one of the side effects could be fluid retention under the eyes. (If you have noticed the bags I normally carry, you’ll understand.) Then he added that he had a good baseline for monitoring me.

I am so glad I have you as a friend. Again, I appreciate your prayers. If you have any questions or need more information, give me a reply. If you want updates of my progress, let me know.