My Dad Is Very Special To Me!

My name is Brittany and I want to share with you why my Dad is very special to me. He is so special because he always played with me, and some of our favorite things to do where …playing soccer in our yard, going for bike rides, and playing games. I also loved helping him with our chickens.

He was very funny and always made me laugh, in fact he taught me how to tell my first joke when I was 4.

What I admire most about my Dad is that he was never too busy to come to all my school programs and sports. He even coached my soccer team last summer. He helped me with my homework every night and especially enjoyed teaching me math.

My Dad was always smiling and he seemed to make other people smile too. I will miss going camping with him and fishing and skipping rocks. But most of all, I will miss him tucking me into bed every night, praying with me and playing me a song on my guitar.

I love my Dad.

Kary's Legacy

Kary named his blog “No Stone Left Unturned” because that is the way he approached his battle with pancreatic cancer. He researched constantly and tried many of the treatments, conventional and non-conventional, natural and even the strange! He felt that to beat this cancer he needed a whole arsenal of treatments and so he never stopped trying one more thing.

Reflecting on the phrase “No Stone Left Unturned” our family realized that, that is Kary’s legacy because that is the way he lived his whole life. Everything he did was done wholeheartedly and without reservation and over the top.

Kary sought to know God with all of his heart and mind and this was never seen more clearly than during his pain and suffering. He looked at the cancer as a gift because he got to know God so intimately.

He blessed his family and friends with sharing all he had on his heart so there would be no regrets of things left unsaid. Yet he never stopped praying for a miracle and expecting one. He had a supernatural peace and joy that can only come from knowing God and when it was time to give up the fight that same peace and joy ushered him out of this world with a smile on his face.

We are going to miss him everyday and we will never be the same but knowing he is out of his pain and suffering and in the arms of the Lord, we have to say, “Blessed be the Name of the Lord.”

In the Oregonian Today

Updated Information for Kary's Celebration of Life

July 10, 2010

11:00am with Reception to Follow

Village Baptist Church

330 SW Murray Blvd.

Beaverton, OR 97005

In smaller sanctuary to south of newer sanctuary. It is easiest to park in south parking lot.

If you have any questions or need directions please call 503-866-2131.

The first picture was when Kary was first diagnosed with pancreatic cancer and was on his way to Cancer Treatment Centers of America. The last picture was when Kary just got back from his last visit to CTCA in May.

Kary Philip Tiel --

Remembering Kary

Update

The service is being planned for Saturday July 10, 2010. The time will be announced hopefully this weekend, but at the latest on Tuesday after the holiday.

It will be held at:

Village Baptist Church
330 SW Murray Blvd.
Beaverton, OR 97005

Celebration Service

We will post when Kary's Celebration Service will be in the next couple of days here on this blog.

Kary's heartfelt desire and hope was that Brittany , his 10 year old daughter, would be able to continue attending City Bible Christian School. The family requests that instead of flowers, donations be made in Kary's name to a scholarship fund that is being set up for Brittany's education there. The school includes up to grade 12. Thank you for your love and prayers for our family.
Portland City Christian School
9200 NE Fremont
Portland, OR 97220
503-252-5207

Ushered into a Glorious Life

Surrounded by those who loved him, Kary was finally able to be freed of his suffering at 10:25 this morning. We were able to sit with him through the night and think through our precious memories of him as we watched him move to such a peaceful state. There were many times in the night he was even smiling. Kary knew what was happening and he let us know he was headed to a glorious place with no more pain. As Kary took his last earthly breath, he truly smiled. That is the last picture I have of my brother. What a treasure he has left us with! Kary's faith has continued to amaze me. He was ready to fight if God allowed him, yet so willing to accept leaving this earthly home. I could almost hear the, " Well done by good and faithful son, well done..." as he was drifting. It was a moment of extreme sorrow and yet joy knowing Kary will never have to feel the pain here again. It is sorrow because he leaves a big, actually huge, hole in our lives. He loved so purely and so innocently. It is fun to comfort my heart and think of him meeting up with our daddy. WOW-- I wish I could share my picture with you! I pray that Kary's life has impacted you in some way and most importantly I believe Kary would want you to know that with Jesus there is so much hope. I will miss you beyond what words can express my dear brother. I am not wanting to sign off as this will most likely be the last post I will write on your behalf. You nodded last night in agreement when I said it will not be long and we will be spending eternity together and you will be my brother forever. So for this short time, I will not see you, but I long for the day when we will be reunited. I love you forever and as Jan would say I love you MORE!.

Looong Days and Nights for Kary

Kary had asked me to update a few days ago, I will do my best here. He has still been waiting to see if he would qualify for the new chemo. I am not sure he would be able to even start it until he can get a bit of weight and strength back. He has really been struggling to eat to over the weekend and has lost more weight. He did stop his current chemo as the side effects were just too much to bear and try to eat. He is now having to take more pain meds than he had wanted, but has realized the importance of keeping his pain more leveled and staying away from highs and lows. Yesterday he was still blowing me away asking me about water issues in Ethiopia and what we should be doing to take proper precautions. He just brightens up talking about things other than cancer. Today has been a hard day for him. He could not carry on a conversation, but he is resting comfortably tonight. He always manages to tell my kids how happy he is to see them though:) Please pray with us for him that he will be able to avoid the pain and be able to eat again. The medical people that come and see him are always touched by his attitude and outlook on life.

In The Tunnel

Kary asked me to write a short update tonight. He really feels like he is in a tunnel and struggling to find the end to either side. The pain is never never ending and it is intense and shrill. Yesterday he weighed in at 118 pounds and he is 6'3-- He does not have any thing left to him and Kary uses the words, "horrifying" when he sees his body now. Kary did find out that his tumor markers have gone down in one week from 97,000 to just over 41,000. This has been cut in half, but when you consider that when he was getting close to 100 the doctors were beginning to worry his cancer is still far to active. From what I understand he has been downgraded from a Hurricane 5 to maybe a 4 1/2, but still a major life -changing storm. So although this makes me want to sing hoping that his chemo has been working, Kary just does not have much on his body to fight with 4 more rounds of chemo. It is tough being on chemo, even when you have a little extra weight on you. I wish I could take his pain. It is hard to watch someone you love, who has fought so so hard with such grace, suffer like this. Kary has to be one of the strongest people I have ever known. Please pray( beg) God to comfort Kary and be that miracle that some do not think is possible. Nights are hard and long-- if you are awaken at all please think of Kary and pray for him to have peace during these hours. The hugs are not long enough and there are not enough words to express how valiant he has been. I love you my dear brother!

Happy Fathers Day!

Kary had several visitors today. Kary's brother Jan and brother in law Aser came by and they all had a great time. Kary wants to thank them both for the very special prayers they prayed for him. Brittany and I had a wonderful Fathers day celebration with Kary. We watched our wedding video and reminisced about our beautiful and special day. We all so enjoyed our time together as always! Kary, Brittany and I want to wish all you fathers out there a very special day!!!

Tomorrow will be the half way point on the chemo regimine he is on. Xelota oral chemo. Kary has started feeling the side effects, which include burning hands, feet and eyes as well as overall weakness. Pray he can manage the next seven days and that it will be highly effective! Thank you.

Minute by Minute

Today is not a day I can post an easy update for Kary. It has been a tough 24 hours! Kary's home nurse came today for the first time, which was nice and will come again on Monday. Kary is very malnourished now and is beginning to feel the weakness from this as it is getting hard to walk and get up with ease. He is thinking about seeking the option for extra calories given through his port, but some have said this would be even harder on his liver. He is eating two meals a day and forcing himself to keep trying to eat, but the calories do not seem to be helping him as much as he was hoping. ( However, Lydia and I thought his face did not look any thinner and if anything is looking some better) Kary is not able to lay down anymore, but is half -sitting up and trying to keep his ascites as calm as possible. I asked him if he wanted a small television to help through those long night hours and he said no that each minute needs to be free so he can really focus on the Lord and be able to talk with him. I treasure each moment with my brother and find it very hard to leave each time. I linger with my hugs and exit-- Being with him brings much peace and I know God has Kary covered, even though it is hard to see him having so suffer so greatly.

Visitors from a California Almond Farm

Today our mom's twin brother and his wife visited Kary. Philip and Barbara came from Chico,CA and spent most of the day with Kary and my mom. What a special time and an encouragement to Kary. Kary is on his 3rd day of chemotherapy and this one he takes in pill form. It makes him pretty tired and it has upset his GI track some. He has to make it 14 days on this with success and then he will have a 7 day break. Then if it is making some headway, he will be put on promising experimental chemo that they are starting to have some success with for pancreatic cancer. Kary is looking forward, hoping this will work and yet has such a deep peace of being able to take each moment as it comes. My admiration for my brother is higher than ever. He is saying things that most would save until they knew what was going to happen. He wants "no stone left unturned" in many ways. Although it is hard to hear what he wants to say at times it is so comforting knowing his heart. I have so often wished I could have a do-over with my brother and I would not have put tape down the middle of the seat in the car so he could not touch my side, I would have shared my bike more, and I would have embraced him graduating from college with me in 3 years with two degrees ( unlike my one degree in 4 years) and just have enjoyed the time more. I appreciate Kary and his hugs of words. If you have not been able to spend time with him, I hope you get the chance. It is a time you will not forget.

Staying the Course

A quick update here-- Kary continues to rally:) Today we went to his oncologist in Beaverton. Amazing doctor who told Kary he is always liking a new challenge and ready to help him fight. Kary's blood levels are looking good and improving. Talk about confusing his docs! Then a doctor from Oklahoma called him tonight and encouraged him that he had peace Kary will continue to improve. Kary will possibly start a new type of chemo here in Oregon too-- I am sure Kary will have more to share on that soon. They are also switching his pain meds to see if he has better results and less side effects. Please pray for our mom too. She is exhausted, but doing a terrific job of doing all the things she needs to be doing for Kary. Please ask God to give her continued strength. Thank you for encouraging Kary and I know he enjoys hearing from you.

Family Reunion of Sorts

This is still his sister here... I am sure Kary will be writing his thoughts soon. Today was when we were supposed to have been away all weekend at a retreat house for a family reunion, but it was changed this week so we could be with Kary. Almost everyone was able to make it today with the exception of Jocelyn, Angela and Flo ( in Denmark) and then Dana ( in NY-- making movies:) ) It was great getting all of us together again. We took turns going in and visiting with Kary as he does better when he can have fewer people and not so much noise going on. He was able to take time and really talk with everyone. I heard many different people say that they felt so much better after seeing him and talking with him. The peace and faith he has are contagious! Kary is very happy to report that his ascites was sooooo much better today-- what a relief and this brings much more comfort for him. I saw him drinking and eating at different times today and so that is great too. My brother Nathan wrote a song for Kary after hearing him talking about his "party" with God that has continued on. It was about the mystery of how during such hard times you can still laugh. It is almost a holy laughter-- Kary is experiencing so much more than most will ever get to.

Better as the day went on--

I was able to see Kary tonight. I knew that he had had a hard start to his day with a lot of dizziness, but that seemed to get better as his day went on. Our older brother came over and was able to get him outside for a bit and Kary enjoyed that a lot. He seemed wonderful tonight and so much better than when he was in the hospital. I think he enjoyed having real clothes on for a change too. I know I say this a lot, but Kary inspires me with how upbeat he is and happy. He is still asking about each of my kids and wants details and its as if he forgets we are there to see him. Kary mentioned on the phone today that he has chosen to not look at his body or what to many would be overwhelming, but he is choosing to listen to God's promises. He has such peace and optimism. Way to go Kary and I really hope he is able to begin sharing his thoughts and wisdom here soon. Thank you for lifting Kary up in your prayers-- we do not take this lightly and appreciate your dedication in this area.

Released

Kary was released from the hospital this evening and is resting back at our mom's house. We were hoping to have a family reunion at Silver Falls this weekend, but decided to cancel it. We are hoping Kary will be able to have us all over to visit him at mom's house on Saturday. It is hard when there are too many people, but we all really want to get together and Kary really wants to see everyone. Kary has a new bed that will hopefully allow him to get comfortable and sleep for longer periods of time now. Thank you for your continued prayers and I know Kary rests knowing he is being covered this way.

Updates from Room 736

Kary was moved out of ICU--wootwoot!!!! He even has a view now. For the most part he has stopped bleeding and may get to go home tomorrow. He is a super human and is trying to keep the pain killers to a child size dose. He likes to be clear-headed and not weigh down his system. He was able to eat a few things today and his blood work is looking good. Hopefully Kary will be able to post here on his own very soon. I thought I was taking the above picture, but was taking a video, but you can see Kary here a bit.

Long Day in ICU

This is still his sister posting here-- Kary endured an endoscope early this morning, followed quickly by a CT scan as the doctors really wanted to find out why he was bleeding. It was all pretty inconclusive, but did rule out some places. His pancreas is pushing up against his stomach and small intenstine so much that there was not as much room as they had hoped to be able to see too far down. Kary did receive 4 pints of blood yesterday and so once his meds from the scope wore off he was feeling some better. He has brought some serious optimism to his doctors and I don't think they can believe how positive their patient is in light of all his body doing. His ascites is making life pretty miserable, but he just takes it in stride and does what has to be done. Today his pastor came by and I heard Kary telling him, " How lucky am I to be able to go through this so that I can know God this intimately..." Kary was once again encouraging those in the room. He also said that the times when the pain is the most intense, God is the most present. He enjoyed having guests today and having time to spend with those close to him. Tomorrow it will be easier if visitors want to come by for a visit in the regular part of the hospital.

Kary was admitted into the ICU today with internal bleeding. He has been meaning to write more updates, but just has been too sick. He had left for Tulsa last week for chemo and to try to have his surgery repairs made, but had a change of plans midway through and went to Colorado for a treatment to help him with his weight. Kary is always on a search for the next thing that may help him. However, on Saturday Kary and my mom made the difficult decision to return to Portland for a bit and stop treatments and get some much needed rest and see if they could get the bleeding stopped that Kary was experiencing internally. Then this afternoon he passed out and my mom had to call 911 and he was taken to the hospital. He was getting a tranfusion when I was there tonight and I actually thought he seemed to be doing better and was getting some color back in his cheeks. Tomorrow they will go down with a scope and try to see where the bleeding is coming from and try to get it stopped. The hope right now is that it is an ulcer. Here is a picture from tonight at the hospital with Regina and Brittany. We got to pray around Kary and he actually was the one encouraging us and we had gone to do that for him. He is so strong and so positive. God is so clearly present with him during this very difficult time. Stay strong my dear bro--

Back to Tulsa...

I spent a wonderful morning with Regina at our favorite tea house before she took my Mom and I to the airport to leave for Tulsa. Regina has to work and take care of Brittany, so my Mom is helping with my care.

On Thursday and Friday, I went to the necessary appointments to schedule chemo and fortunately my blood counts stayed high enough that I was able to get my first chemo on Saturday.

Home With My Family At Last!

I really cherished the four days I got to spend with Regina and Brittany. I was not up to doing much besides just enjoying our time together. We also enjoyed visits from our family and friends.

Squeezing In an Unconventional Treatment Before Flying Home!

Our flight to Portland does not depart until 1:00 PM, so I decided to

visit a Tulsa Health Clinic for Hyperbaric Oxygen Therapy. I was placed into a chamber which was pressurized to 1.5 atmosphere with 100% oxygen for 60 minutes. Hyperbaric Therapy has many uses, but I am undergoing the treatments to stimulate blood production. My blood counts have never recovered from the previous chemotherapy and radiation I received in 2008 & 2009. Low blood counts (white blood cell & platelets in particular) have prevented me from undergoing any further conventional chemotherapy treatments.

Finally Released

Late Tuesday night after the surgery, I developed a significant temperature which indicated an infection due to the stagnant bile entering my bloodstream. Intravenous antibiotics were immediately administered while blood samples were being cultured. I would have to stay in the hospital until I had a normal temperature for 12 hours minimum. My fever finally broke at 5:00 AM on Thursday morning and I was released later that afternoon with a five day prescription for oral antibiotics.

I was scheduled to receive chemotherapy today, but its not going to happen because I cannot receive chemotherapy until after I have completed the antibiotics.

We have decided to return home to Portland during this five day intermission.

Stint Surgery

In order to eliminate the biliary drain bag and re-establish bile flow, a stint will be installed at the location of the common bile duct blockage to reinforce the duct so that it can drain properly. Unfortunately, the surgery did not go as planned. The proposed coated stint would not fit my anatomy and so an alternate uncoated stint was used. Worse, when the biliary drain was removed the interventional radiologist realized it had been placed through a portal vein or artery, a very serious problem that could not be fixed during this surgery.

In order to complete the surgery, the drain was re-installed and capped off until a later procedure could be scheduled to repair the portal artery or vein. I will stay in the hospital for 24 hours for observation and be released on Wednesday.

Lazy Weekend in Tulsa

Instead of returning to Portland as previously planned, I decided it would be wisest to spend the weekend in Tulsa recuperating from the surgery and making sure I did not have any infections. Unfortunately, this would mean I would have to miss Brittany's children's musical at our church. She had a lead part & sang a solo.

The highlight of the weekend was the Sunday morning service at Victory Christian Center & lunch at a Thai restaurant. My Mom & I spent the rest of the weekend taking short walks on CTCA's nature trail & relaxing at the center.

Pleurx Abdominal Drain & Biliary Drain Surgery

At 3:00 PM, I checked into the CTCA hospital for surgery to install a pleurx abdominal drain & separate biliary drain. I decided to have both done at the same time, so I could speed up the timeline until I could receive treatment & to avoid separate recovery periods.

The surgery began with the installation of the pleurx abdominal drain to deal with the recurrent ascites (excessive accumulation of abdominal fluid) that has recently developed. The drain is a soft, semi-permanent catheter which was installed by CTCA's interventional radiologist just below my bellybutton. I will be accessing this drain by myself at home every other day and will hopefully be able to minimize my discomfort as well as frequent trips to the hospital to drain the fluid by puncturing the peritoneum. The surgeon was then able to drain 3 liters of fluid with the new drain.

He then proceeded with the installation of a biliary drain which was placed at the center of my right side ribcage. The drain consists of a small flexible rubber tube catheter placed into my blocked common bile duct (the passageway for the bile to flow from the gallbladder and liver). The installation of the drain did not go smoothly and required several attempts due to my uncommon anatomy. The tube will be connected to a drainage bag for several days for monitoring and then will be removed once a stint is placed at the blockage in the bile duct (separate surgery).

Despite the difficulties installing the drain, the surgery was completed successfully in about 2 hours. I woke up from the anesthesia in horrific pain, causing my body to go into shock. I was shaking violently for over 30 minutes before they were able to gain control. Fortunately, I only remember bits & pieces of that time. I will stay in the hospital for 24 hours for monitoring & will be released on Friday.

Out of Intensive Care

I continued to be in much pain due to the excessive fluid on my abdomen (ascites). Finally, after four days of waiting, all of my pain was drained away! A large needle attached to a vacuum bottle was inserted through my peritoneal lining and almost 2 liters of fluid was drained. What a difference that made...for about an hour. I soon realized that the draining of the fluid was not a permanent fix. I was discharged from the hospital at noon. Round 1 - Over.

Changing of the Guard

At 7:00 AM I received a bedside visit from my Gastroenterologist, who informed me that he had modified his schedule, so that he could perform an Esophagogastroduodenoscopy (EGD) at 11:00 AM to determine where the bleeding was coming from. The EGD procedure utilizes a small flexible endoscope introduced through the mouth to check for problems in the upper digestive tract. The procedure is performed while the patient is under sedation. It went very well and he determined that the bleeding had already stopped and was most likely the result of some esophageal verices due to excessive pressure in the common bile duct which had become blocked. The Dr. relayed his finding to my friends. He told me at a subsequent appointment that I had the most awesome friends he had ever met.

I woke up just in time to say goodbye to Aaron, Bobby, Mark, & Peter who were headed to the airport. The weekend was nothing like we had planned, but it was wonderful to have their loving & caring support during this traumatic time.

A few minutes later, my Mother arrived from Portland, Oregon. She dropped everything to get on the first plane to Tulsa when I asked her to come. She arrived just in time to get me some food from the cafeteria, as I was cleared to eat for the first time since Saturday morning.

She was quickly brought up to date as almost all of my doctors came to the room to discuss the new findings. We visited until almost 11:00 PM, when she checked into my outpatient room at the center. CTCA is set up great for visiting family members as they provide accommodations at the treatment center.

Devastating Test Results

On Sunday morning, the attending physician discussed the findings of Friday's PET/CT scan. I was informed that the pancreatic tumor had enlarged to the point that it is blocking the common bile duct, causing the jaundice & elevated bilirubin levels.

The scans also revealed that my abdomen was retaining a large amount of fluid, a condition called Ascites. Over the last two weeks my abdomen had slowly become more and more distended limiting my ability to eat, lay down, and breath deeply.

Most significantly, my previously pristine liver has now developed multiple tumors on both lobes in less than 60 days. Radiation is no longer an option. Where to go from here?

My Friends Are Coming To Visit This Weekend

Four of my best friends from Los Angeles, California are coming to spend the weekend with me! We spent a lot of time together during my employment at KPFF Consulting Engineers during the mid 1990's in Santa Monica, California. We have enjoyed many weekends together since I left KPFF and started my own engineering business in Portland, Oregon. In fact, they came to Tulsa to visit me when I was first being treated.

Unfortunately, on Friday night I started to bleed internally as evidenced by significant black stools. By the time they arrived on Saturday, it had progressed to the point that I needed to seek medical attention. I met with the doctor and made a deal that I would spend the day with my friends and check myself into the hospital that evening.

We had a very enjoyable day catching up over lunch on the Tulsa Riverfront and watching the Los Angeles Lakers playoff game.

I checked into the hospital as promised that evening looking very jaundiced, and my faithful friends stayed with me until almost 3:00 AM, when I was finally asleep in the intensive care.

Surprise...Surprise!!!

On Wednesday, during my appointment with the radiation doctor to discuss the treatment schedule, I was informed that the blood work completed earlier that day revealed extremely elevated liver enzyme & bilirubin counts. The radiation was put on hold, and a PET/CT scan was ordered on Friday morning.

Returning to CTCA for Tomo Radiation

In early November 2009, after a nearly 9 month break from chemotherapy and almost 17 months from the date of my original diagnosis, we discovered during a routine checkup at the Cancer Treatment Centers of America in Tulsa, Oklahoma that my blood tumor marker (CA 19-9) was beginning to rise once again above a normal level. Over the past few months the tumor marker has risen from 50 to over 2584. I have not been able to proceed with any chemotherapy treatments due to exceptionally low platelet & white blood cell counts, which have not recovered from the extensive treatment I previously received at CTCA.

A PET scan in mid December identified an active area in the pancreas at the original tumor site. I spent the next few months pursuing multiple naturopathic remedies in an effort to improve my blood counts, so that I could proceed with traditional treatments. However, the blood counts have remained low and the only treatment option available was a second round of tomo radiation, which is scheduled to begin on May 5, 2010.