Scott gets hair

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Friday, October 31, 2008

Video Tribute

Our dear friend Andy prepared this beautiful presentation about Scott. The photos are from the building projects on the Navajo Reservation with Hearts and Hands in Action. I thank Andy from the bottom of my heart. I am so touched by this and am grateful for this sweet tribute.
Thank you Andy!!!!

This is the link: http://www.youtube.com/user/leatherneck1

Thursday, October 30, 2008

May 26, 1957-October 28, 2008

My sweet Scotty passed from this life to the next on Tuesday October 28, 2008 at 10:12 pm. It has been the most difficult thing I have ever faced. I love him so deeply and have only begun to feel the pain from his abscence. He lived an amazing life and I am so grateful he chose to share it with me.
His services with be held on Monday November 3, 2008 at 11:00 am. The address is 1125 East Alpine Blvd; Alpine, Utah. We will also have a visitation prior to the service beginning at 9:45. Following the services, we will have a luncheon for family and anyone who would like to stay and share their experiences and stories of Scott. The past 2 weeks have been like trying to stop a frieght train as we did everything humanly possible to keep him here with us. I had so wanted to get video of Scott telling all of his wonderful stories, but it just wasn't possible. For this reason, we would love to have anyone share with us so we can keep his memory alive. You can also email me at susang@axiomfinancial.com with anything you would like to share.
Thank you all for you love, support and prayers. I have felt them and they have lifted us up. I love you so much, Susan

Friday, October 24, 2008

Hours to days

I'm not sure how to write about what has happened in the last 10 days. On October 14th, Dr. Whisenant told us that he was looking at a dying man. He said that Scott was in liver failure and had weeks, possibly months. To say we were in shock is an understatement. I was better prepared for the news then Scott was. For the past few weeks, as I watched and cared for Scott, I knew he was declining. I had even visited a Hospice website and read 'The Dying Experience' and knew that many of the signs were present. Scott had been very discouraged in the weeks prior to our visit with Dr. Whisenant, but he didn't realize how serious things were. Since this visit, his condition has worsened greatly each day. Yesterday, I had a hospital bed brought in to help me better care for him. He was somewhat conscious and while visiting him, Scott's brother Brenn asked if he should give him a blessing. We then invited all the adult family members from both of our families to join us as Brenn gave him a blessing. It was a sweet and spiritual experience to have our family here to love Scott and share this time with him. My words come with difficulty as I express my feelings that he will only be with us for a few more hours, possibly days. Liver failure is a nasty disease. I am angry that it is stealing my sweet Scotty from me. One of the most difficult things is how it has effected his mind in the last few days. Robbing the real Scott from us before his body was ready to leave. One of the sweetest things to come from the last 2 days is that he shared with Elise and I that he was being visited by angels and included us in their ranks. He also shared with Elise that his father and brother and been with him during this time. We feel so blessed to know that during the most difficult days of our lives that Heavenly visitors have been present to make all of our days easier. I am so grateful for the Spirit that is present in our home. I know that the comforter is lifting and carrying us through this time. I am also so grateful to our wonderful family and amazing ward family who have done everything possible to lighten our heavy load at this time. Thank you from the bottom of my heart. I love each of you more that I can express. I feel your love, concern and prayers as I move through the days. Thank you for being a part of our lives.
Susan and family

Wednesday, October 15, 2008

Difficult Days

I'm sorry I haven't posted for a long time. I don't even know where to start so I will start with the only good news I have. Our son Matt was married last week to a wonderful girl from American Fork. Her name is Heather Cooper Gifford. They flew to California and were married in Huntington Beach, right on the beach. We are thrilled to welcome her to the family and wish them every happiness.

News about Scott isn't so great. 2 weeks ago one of Scott's bile drains began having problems. He again started with a fever and we went to the hospital to have the drain tube removed and reinserted. He also started the antibiotics again. This Monday he was scheduled for a CT scan as a follow up for the oncologist. Because of continued low grade fevers and nasty drainage around the tube we were concerned. Following the CT scan, they informed us that Scott had an excess amount of fluid in his abdomen which they called ascites. They elected to insert a tube into his abdomen and drained off 2.7 liters of this fluid. Apparently this is a condition that happens with liver disease. Tuesday we had an appointment with the oncologist to review the CT scan results and his labs. The oncologist is very, very, very concerned about the condition of Scott's liver. His liver numbers have gone up drastically since his last labs in August. This was a great surprise to us. We were more concerned about additional tumors from the CT scan than liver issues. The oncologist said there wasn't any detectable new growth of the cancer, but that the liver problems were more serious since they couldn't really do anything for these. He referred us back to the Hepatologist we had seen when pursuing the liver transplant, but wasn't very hopeful and was quite negative. I can't even type the prognosis he gave us, because it is like giving up. The night was spent with our 'kids' discussing what we had heard and the concerns. Our plan is to work to help him regain his strength. This includes regular walks and resuming some of the supplements he took before surgery that are designed to aid the liver. To say that I am terrified is an understatement. Please continue to pray that Scott's liver will begin to heal itself and the function will improve. If you have any advise, please email me at susang@axiomfinancial.com or call me at 801-362-0960. We love you and thank you so much for your love, prayers and support.
P.S. If you would like to call Scott our home phone is 801-492-1821 and his cell phone is 801-592-8020. Please be positive when you speak with him. We recognize how important it is to have positive thoughts for the healing process.

Wednesday, September 24, 2008

A long time

I knew it had been a while since I posted, but I didn't realize it had been nearly one month. I have had several friends and family request that I post more or again so here it is.
Today was an interesting day. Dr. Mangus from Indiana was here in Utah to give a speech to the transplant department at the University of Utah. He called last night to ask if he could come by our home today to check on Scott. I was very impressed that he would make the effort to drive to Alpine to follow up with Scott. It was an informal visit obviously, but he checked the incision and said it looked like it was healing well. (We are almost there, hopefully it will be completely healed in the next couple of weeks) He did ask Scott about his weight loss/gain. Scott lost about 40 pounds from the day before surgery in July. In the last week or two, Scott said he had gained back about 5 pounds. Not great, but at least it is a start and he isn't still losing weight. Scott has not been on any antibiotics for two weeks now. We were very excited to have him finally off the antibiotics. We thought his appetite would increase and he would feel like eating again. Sadly that hasn't been the case. Instead, he has been very nauseated making it even more difficult to eat. We discussed this with Dr. Mangus and he felt it is possibly the pain medication that was changed by the Oncologists office. He is going to follow up with Dr. MacPhearson. She is the doctor who is following Scott at Dr. Whisenant's office. Dr. Mangus is also going to call in a prescription to help with the nausea. Additionally he is going to contact Dr. Harker, the radiologist, to discuss the drain for the abscess which he feels could be removed now.
Dr. Mangus discussed the possiblity of Scott returning to Indiana for a procedure (not surgical) to again attempt to connect the liver internally so he could eventually have the two biliary drains removed. The procedure has never been done, but the radiologists there in Indiana think it might be possible. I am not sure when or if we will return to try this. I know that Scott would have to be much much improved before he would even think about returning to Indiana. He has informed all of us that he will NEVER again undergo a major surgery. I understand why he feels this way, especially after the long, difficult road he has been on.
I love him so very much and am grateful for every day we have together and every small improvement we see.
For now as always, we are so grateful for your thoughts and prayers.
Love, Susan and Scott
* I will 'try' to post more frequently, thanks for your patience

Wednesday, August 27, 2008

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

Monday, August 25, 2008

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

Monday, August 18, 2008

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.
Susan, Scott and family

Sunday, August 10, 2008

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!

Wednesday, August 6, 2008

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.

Monday, August 4, 2008

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.
Scott, Susan and family

Saturday, August 2, 2008

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)

Tuesday, July 29, 2008

Out of the hospital.

Today is a very good day. After 14 days Scott has been officially released from the hospital. Right now we are in our hotel suite and will be going back to a clinic at the hospital on Thursday morning. If all goes well, we are praying the doctor will release us to return to Utah this weekend.
Monday Scott had a procedure to see how everything was healing. The doctor and the radiologist were both encouraged. It felt great to have some good news. We really can't wait to get home and will fly out as soon they give us their approval.
Thanks so very much for all your love and support!
Love, Scott and Susan and family

Sunday, July 27, 2008


Today is Sunday and we are here in our hotel suite. On Friday Dr. Mangus allowed Scott to leave the hospital to come to the hotel for 2 days. He has to check back in today at 4:00pm. Tomorrow he has a procedure to replace at least one of the drains he now has. We are hoping that he can have the 2 JP drains removed as they have had no drainage for several days.
Yesterday Scott wanted to go to the Indianapolis Zoo. Big day out! We rented a wheel chair and were there for about 1.5 hours. It was about 100 degrees with 100% humidity! (not really sure, but that is how it felt to me) Luckily we are staying only a little over a mile from the Zoo. It took alot out of all of us, but we had a good time.
We have been very blessed by the Sinclair family here. They are related to the Hills in our home ward and President Sinclair is the Stake President of the Indianapolis North State. He and his sweet wife Mona visited us in the hospital on Tuesday. After the visit, Elise went to their home for the evening and President Sinclair and President Cowley (Indianapolis West Stake President) gave Scott an amazing Priesthood blessing. We are so very grateful for this blessing and the comfort, hope and faith we received. Since then, Elise has been welcomed by the Sinclairs again on Friday evening and spent Saturday night at their home so she could attend church with them today. Elise has really enjoyed spending time with their family. I am so very grateful for the Sinclairs. They have been such a bright spot for all of us. I know the Lord had a hand in bringing them into our lives.
We are hoping the Doctor will officially discharge Scott to return home sometime this week. We are all so very anxious to come home.
Thank you again for your continued love and prayers!

Monday, July 21, 2008

Long Tough Days

It has been several days since I have posted. These days have been difficult and I haven't known what to say. On Wednesday and Thursday Dr. Mangus confirmed that the areas that didn't show cancer while in surgery were actually cancerous. This was difficult to hear as it means there is no longer any chance of a transplant in Scott's future. It also means we don't know what the future holds. Dr. Mangus stated before surgery that Scott was one in 1000 to be here and doing so well following a Klatskin tumor. He now is unsure what the status of the cancer is. It is considered stage 4, but he thinks it may be a very slow growing form. He also stated he isn't sure if his body is somehow keeping the cancer in check. We did consult an oncologist today with no information. I really don't like talking to them, because they don't have any good answers.
Obviously, our number one focus now is to get Scott well enough to leave the hospital and come home soon. Now he is doing pretty good, but awaiting the results of a CT scan because of some severe bloating today.
Thanks so much for all the prayers and kind thoughts and words. They mean so very much to us. We love all of you. Please include him in your prayers for a speedy recovery and return home to be near those we love so very much. Also, please include a prayer for our sweet grandson Taylor Scott Gifford (10 months) who is also hospitalized back home for pneumonia. Utah seems so very far away right now.

I am not sure if or when I will post as it has been much more difficult than I had hoped it would be. Thanks for your patience.
Scott, Susan and family