Thanks for your patience with me and this blog!

I originally thought that the blog would be a great way for me to journal Scott's surgery as well as update those who love and care about us. I think that my thought process was that if I was blogging everything would go well and it would be easy to blog the good stuff. Obviously that hasn't been the case. This has been one of the most difficult things I have ever done. I am working hard to keep you updated while being sensitive to Scott and his needs. He originally did NOT want me to blog because he felt it was too personal and he is ultimately shy and he also didn't want me to make him out to be a hero. (Which he most certainly is!) Because of this I have limited the blog to mostly the boring/easy stuff. I have kept my extreme emotions and opinions to myself and a few friends and family who I have talked with. My personal tendancies would be to ramble on and on about everything which wouldn't serve Scott at this point. I so recognize my weaknesses and I wish I had a degree in English so this was more interesting and easier to read. (Writing is not a strong point, I'm a talker which is obvious to anyone who knows me) Thank you to the many of you who have commented, emailed, and told me that you appreciated this blog. Without your comments, I would have stopped long ago. Ultimately there is some healing for me as I make these entries so I will continue when I feel there is something to share.
Love, Susan

Another week

Well another week has passed. Scott is slowly improving. He is still on 2 oral antibiotics and has infection in his incision as well as continued drainage of infection into the newest drain. The incision is starting to show some improvement so we are hopeful it will be healed soon. They opened the incision over a month ago and I know that it will be a great day when it is finally healed. Scott is going in again tomorrow for another CT scan to check the drain that is draining the abcess/infection. It would be great to have it removed, but we don't want them to take it out too soon and have the infection flare up again. Obviously we are learning patience. Maybe we can learn it quicker so he can feel more like himself again and start gaining weight.

Friday we met with an Oncologist, Dr. Jonathan Whisenant. I was absolutely dreading this meeting after what we went through when he was first diagnosed. The Oncologists were very gloom and doom and I didn't think either of us could take that right now. He did start out by saying that the cancer was incurrable. We probably expected this, but not the thing we wanted to hear. He did go on to say that the cancer has been there for the past 3.5 years. He said that there are two kinds of this cancer and one is very aggressive (you can almost watch it grow) and one that is much slower growing. He believes this is the kind of cholangiocarcinoma (not sure of the spelling) that Scott has. He said the cancer was not the most important thing to treat right now. He said Scott was very, very, very complicated. He said we needed to get the infections healed and the liver monitered right now. He ordered labs so we will know whats going on with his liver and how it is doing since we got home. (Today I think his eyes are a little less yellow than they have been the last few weeks) He scheduled Scott to come in this Friday and meet with one of the doctors who handles a broader range of care than just the cancer. He also scheduled a full CT scan in October (after the dust settles) to look for any tumors as none have ever shown on any CT or MRI or PET scan since the original surgery in January 2005. Periodically they will do CT scans and if tumors begin to show up, there is a mix of 2 chemotherapy drugs that have been successful in 50% of the cases in shrinking the tumors. Additionally Dr. Whisnant prescribed a drug that may help increase his appetite. Scott is very anxious to have his appetite return and stop the weight loss slide so we are very hopeful now that he has this drug he will be able to eat and appreciate food again.

For me this was the most hopeful news I have heard in the past 6 weeks. Dr. Whisenant also stated that the decision to go to Indiana was the best decision we could have made. He said that surgery was the only way to find these tumors as Scott had had every other test possible and they had gone undetected. He indicated that if Scott had a liver transplant that in 2-3 months he would have been in real trouble. We both know the Lord directed us to go to Indiana. I have told several friends that there was no other reason for us to go to Indiana especially once he was approved for a transplant here in Salt Lake. We had hoped and prayed for a transplant for at least 2 years and then the Lord made it very clear that Indiana was the correct choice. We have been so blessed and we know that our Father in Heaven and our Savior Jesus Christ love us. We are so grateful to all those who have loved, supported, fed, prayed and fasted and assisted us in any way. We feel your love and are so blessed to have each and every one of you in our lives. Thank you for being there for us! We love you so very much!
Love, Scott and Susan and family

CT scan Tuesday

It has been 10 days since Scott had the tube inserted to drain the infection. Tomorrow he will be going in again for a CT scan to look at the tube again and see how it is doing. Additionally they are going to look at the two biliary tubes that drain his liver and see how they are draining. We are still getting alot of fluid/infection from that drain so I am not sure what they are going to do. Additionally his oral antibiotics run out today and so I am wondering if they will want to start him on IV antibiotics. His incision is still open and infected. I will be sending photos to Dr. Mangus in Indiana again tomorrow for him to review. Scott is feeling a little better each day. He is eating a little more also, but doesn't have much of an appetite yet. Today he even went down to the jobsite and took his crew to lunch. It was the first time he has been out and driven since the surgery which will be 5 weeks tomorrow. I think it took more out of him then he thought it would so I'm not sure how soon he will want to go out like that again.
We so want to let everyone know how much we appreciate the continued love, thoughts and prayers.
Love,
Susan, Scott and family

Slowly, slowly.....

It has been wonderful to be home the last few days. Scott is slowly, slowly recovering. The infection has made recovery a challenge. On Friday Scott called Dr. Mangus and he actually answered. This was a great blessing as we had already realized we didn't have a doctor who would treat him here in Utah. (Scott's previous doctor declined to treat Scott when I spoke with him on Friday. He stated Scott should return to Indiana and be admitted to the hospital there and be treated by Dr. Mangus) Luckily after explaining to Dr. Mangus what was going on, Scott gave him the phone number to the Radiologist, Dr. Colleen Harker, who has treated Scott for 3 years. Dr. Mangus was able to reach her and she immediately called Scott to come into the new IHC hospital. We spent about 5 hours there and Dr. Harker was able to insert a new tube up near Scott's rib cage to drain an abcess he had which was full of some nasty 'pea soup' infection. He still has this new drain until the fevers are gone and there is no more drainage. They aslo did a quick culture and now he is on 2 oral antibiotics to treat the infection. Hopefully these antibiotics will knock it out. If not, he will have to go back in and get a pic line and start on IV antibiotics at home. He has been doing somewhat better since Friday. Our other concern right now is the infected areas of his incision. There are 3 areas in the approximately 18 inches of incision that are open and infected and draining. Tomorrow I will send a photo to Dr. Mangus via email so he can look at them and let us know if he thinks they are healing properly. How blessed we are to live at this time on the earth! I am so grateful for technology and modern medicine. I am also so grateful for two wonderful medical professionals that are truely Christlike care givers.
Thank you so much for all your love and prayers!
Love,
Susan

Home Sweet Home!

Yes, we finally arrived home. After 3 + weeks and another very long travel day, we arrived home in Utah and finally in Alpine at 1:00 am. What was supposed to be 5 hours of flying, turned into 9 long hours of flights and delays. Words cannot describe the joy and gratitude to finally be home. It was a really long day and Scott is resting and recuperating today. He is still battling infections and as always I am a nervous wreck. We don't have a doctor here to see if there are problems. Dr. Mangus had not been able to reach Dr. Ott when we saw him on Monday. I will be 'trying' to contact Dr. Ott myself tomorrow so we have someone who can step in if needed. Additionally, I am as always looking for natural healing choices to go along with the antibiotic he is now taking.
I so appreciate your continued prayers for his continued healing. In addition I am praying that we can hear the promptings of the Spirit in whatever path we should pursue for the best future.
I am so grateful for all the love, prayers and support.
Love,
Susan

Homeward Bound...we hope.

Today's appointment with Dr. Mangus went quite well. All of the blood numbers have been improving even the white blood cells. So it appears that the infection is getting better. Scott had a CT scan today and was prescribed a new antibiotic for seven days. The good news is that if the CT scan comes back without any additional fluid in his abdomen, we can fly home tomorrow, Tuesday!!! (I was optimistic and had purchased airline tickets for today, but there is no fee to change dates and flights, so I rebooked for tomorrow.) We should hear from Dr. Mangus tomorrow morning. Our prayers are obviously focused on a clear CT scan. Our primary goal is home, family and friends.
Love,
Scott, Susan and family

Wanting to be home

We had so hoped to be able to come home on Friday, but Dr. Mangus wasn't ready to release Scott to fly home. He did pull the 2 JP drains and removed 1/2 of the staples in his incision. The concern is that Scott has some kind of infection. He has been running a low grade fever in the evenings, but not during the day. Also, his incision has some infection. He is on an antibiotic and has been since the 24th. They did a check x-ray and blood and urine cultures when we were in on Thursday. We haven't heard anything back from those tests. Additionally, Dr. Mangus is going to contact a doctor in Utah to follow up when we return. We gave him Dr. Ott's information and Dr. Mangus knows Dr. Ott. (they were in the same ward at some point in Baltimore) Hopefully he was able to contact Dr. Ott and make arrangements so we can leave soon.
Scott is scheduled to be back in clinic on Monday at 8:00 am. If everything is well, we are hoping to fly out on Monday afternoon.
Again, I am requesting anyone who will be fasting this weekend, to please include Scott in their prayers. He is soooooo very anxious to come home. I will be fasting that he can return soon. It is so difficult to be so very far from home and family and friends.
Love to all of you!
Susan, Scott and Elise (still in Indianapolis)