Celebrating Art's Life

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

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

1. God loves each of us perfectly and ultimately. His love and presence are forever ours when we trust Him.


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


3. 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.


4. 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.


5. 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.


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


7. 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

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

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

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

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

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

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

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

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!!