The Mayo Clinic

Tomorrow morning I leave for home after being on the road for nine days with Nate and Rachel. We made the twelve hour trip to come and be with Larry who was admitted to the Mayo Clinic in Phoenix, AZ on Friday, May 20th for continual bile blockage. Sadly, he was not well enough to make the drive home with us and we sent him home on a flight earlier this evening. He needed to get home the quickest way possible and be home where he is set up with all of his medications and treatments.

At this point we have so many more questions than we do answers, but the one thing that I have to keep reminding myself is that the Lord is mindful of our situation and he is in the details. So much of this does not make sense to either one of us. We are constantly being put in situations that require a great deal of faith and have taken both of us way out of our comfort zones. I think that I can't take anymore and then I learn that I can. At one of my low points I reached out to a friend from home. She gently reminded me that the Lord makes up for our weaknesses and she reminded me to pray for inspiration and miracles that I couldn't currently see. So we continue to walk this unknown road and trust in the Lord and his timing.

We came to the Mayo Clinic out of shear desperation. On May 1st we made our six trip to the ER in Utah in just over a month. All of these visits were the result of biliary drainage issues. The week before Larry was admitted to the hospital for the fifth time and they increased the size of the tube to his external drain. It worked ok for a few days after we got home, but a few days later he started to have excruciating pain that was hard to manage, even with pain meds, and he started leaking bile from the drain site in very large amounts which caused his skin to be extremely irritated.

Larry hadn't slept well in several nights and a few days later we very sheepishly made our way back to the ER. We felt like we were on a never ending nightmare hamster wheel. As they were getting ready to do the same thing over again we had a doctor , who wasn't originally assigned to his case, intervene and make a suggestion for putting in a stent again while keeping the external drain for a few days to allow the stent to completely intervene. We had hope that this intervention would possibly be the answer to solve the problem with all of the stents coming out.

A couple of weeks later we were so happy to learn that the stent was still in place and working properly and he was FINALLY going to be able to have the tube taken out of his liver after almost two months of constant hell!  Through all of the pancreatitis, and the worst of the pancreatic cancer, having the tube in his liver was by far the most painful thing that he had been through. Not only was the pain excruciating it was constant. Even though he was on heavy duty pain killers he could never get the pain below a 5 which affected all aspects of his life. He described it as feeling like he had an arrow stuck in his liver 24/7. He would walk around the house moaning in pain constantly. Emotions and feelings at our house were very heightened. In fact, there was a time that I ask him to please move in with his family in Malad because I just couldn't do it anymore and I thought that they were much better equipped to take care of him than I was. He told me that the most important thing I could do was just to learn to ignore him and take care of the rest of the family and so, as hard as it was, that is what I learned to do. Having the tube in gave him no quality of life. Before the tube he would get up and be active several hours a day. After the tube he just laid on the couch moaning in pain.

We were so excited to learn that the stent was working and  finally have the tube pulled and had hope that we could get back to somewhat of a normal life. The tube was removed on Monday the 16th of May. On Thursday I heard the dreaded words "I'm itchy again!" Which means that his bile is not draining again. I texted the doctor who was in charge of Larry's case down at IMC and he immediately called us back. We ask him what our options were and he told us either we get the tube put back in or Larry will develop an infection from the bile backing up and he will die. We had already made the choice that Larry would choose hospice over the tube being placed again.

Finally we made the decision to do something that we should have done years ago. A friend of ours from our feed store had been constantly encouraging us to visit the Mayo Clinic in Phoenix. Not only had they saved his life on two occasions when the hospitals in our area had told him there was nothing more they could do, he also had a friend that they took to the Mayo Clinic on his death bed who is also now doing great. Our friend owns a summer home in Idaho and a winter home in the Phoenix area. He invited us to stay in his guest house if we ever decided to make the trip. We finally decided that it was time.

Before we left Larry and I were both given beautiful, and very comforting, priesthood blessings. One thing that I remember is that I was promised was that I would know the words that I needed to say to the doctors and that I would know how to advocate for Larry. I felt that blessing very strongly answered when we met with the doctors the first day we were there. Larry was told that he had not come this far to only come this far. He is still here with us, but truly only hanging on by a wing and a prayer. 

He is a walking time bomb with so many life threatening things that could end his life at anytime from blood clots, to cancer taking over his body, to developing an infection. The doctors at the Mayo Clinic were able to create a new internal passageway for his bile to drain. They have also managed to get the internal stent to stay in, but we keep having problems with blockage and bile backing up! I am about ready to start giving him draino to clear the clogs (ha! ha!). Even though things have not turned out exactly how we had hoped, we now feel like we have exhausted another resource, have been given another passageway for the bile to drain and have figured out a solution for the stent to stay in, and we have been inspired with some different things that we are going to try. We also have learned the importance of getting this cancer shrunk because the tumor is what is pressing on his bile duct and causing all of the trouble in the first place. 

Not sure where things will go from here, but I can only continue to hope and pray that we will stay close to the Spirit and know the path that he would have us take and that we will be willing to accept his will in all things. My heart is heavy and so many questions remain unanswered, but I know that I just have to keep getting up everyday and putting one foot in front of the other, remember to count my blessings along the way, and rely on his strength when I just feel like I can't do it anymore.

Our 25th Anniversary was Tuesday, May24th. Larry knows how much I had always wanted to go on a cruise. Originally he planned to surprise me with one, but we ended up scaling it down to a trip to Yellowstone. Neither idea ended up working out and we ended up spending it at the Mayo Clinic. Miraculously Larry made it to our 25th anniversary (which was one of his goals), we were able to be together, and we are able to get an outside picture together in the desert walking path they have for patients. If you have permission from your doctor, you are able to get dressed and spend time outside during the day. Every hospital should have something like this. It was so healing for Larry to be able to spend time outdoors everyday.

We flew out to the Mayo Clinic the Friday before the twins high school graduation. Unfortunately, Larry was still in the hospital so he missed everything, but I was able to catch a flight home the day before the graduation and be there for it. Also, unfortunately, they scheduled Larry for his surgery to have a new drainage route created for bile drainage for Wednesday, the day of their graduation. I found this out 20 minutes before I left for my flight. Friday morning, the day after the kids were finished with school, we left for Arizona to come and be with Larry.

On our way down we were able to stop and visit with my sister and go visit my Mom's and grandparents graves in Kanosh. I love the top picture of Rachel holding hands with her cousin, Lilly Rae, who had just turned 8 and was telling Rachel all about her baptism which was last Saturday. We had really hoped to make it back for it, but Larry was not released in time for us to make it back.

This was taken in the town of Wickenburg, which was the closest town to us about 15 miles away. It is a town of about 7,500 with a lot of rich history.

These are some pictures at the ranch that we stayed at. I will say it is amazing how much reading can be accomplished when there is not tv available to watch. Unfortunately, we got into town after dark and it was pitch black where we were staying at. Maps kept taking us up on a washed out road that was at the top of the hill. Being in the prius it was really scary. At one point I backed the car up down the hill and floored it up the hill while trying to ditch all of the pot holes on my way up so that I didn't rip my front bumper off. The kids kept saying that they felt like we were in a murder mystery and they were scared. I told them everything was going to be fine and we said a prayer to know where to go when we got to the top of the hill. I was praying that Heavenly Father would help us find where we were supposed to be because maps had failed us. Miraculously, we drove down the hill and turned right into the property that we weren't able to see because it was so dark. 

Unfortunately, the night that we got into town Rachel and I came down with fevers and were very sick for a couple of days. I was so discouraged that I just wanted to crawl in a hole. We had driven all of this way, I hadn't seen Larry in almost a week, and I was so sick with no support system. I think Larry was feeling the same way. Luckily, by Sunday afternoon Rachel was almost completely better and I was at least feeling good enough to drive. We met Larry outside at the hospital and had a very nice visit, but at a distance of course.

We LOVED the outdoor mall that was near the hospital. We especially loved all of the misters and the splash pad. I was feeling very anxious while Larry was going through one of his procedures and we needed something to do for a few hours. TopGun happened to be playing at just the right time! It was an awesome movie, that helped keep my mind off things for a while and the reclining seats in the theater were awesome! I was reminded as to why I don't normally allow my littles to watch PG-13 movies. Glad we were able to see it, but next time it will be on clear play!

While in Phoenix Rachel and I had the opportunity to go to the temple. While in the dressing room one of the elderly ladies was asking where we were from. When I told her Idaho one of the young women from another group piped in and said, "Do you know Bekah from Idaho?". Her adult leader piped in that there are lots of Bekah's from Idaho, but as we got visiting more I learned that she was talking about my Bekah. She said that Bekah was from the Malad area and that she sees her when they come to the reunion in the summer. Larry's cousin is from the Phoenix area and we just happened to run into her daughter, Lindey, while at the temple. It felt like the Lord was reminding me that I was being watched over no matter where I was at in the world.

After we dropped Larry off at the airport I took the kids swimming to celebrate our final night in Arizona. Nate went off the high dive for the first time and I had to pull him away from it when they finally closed the pool. At the pool we went to you had to pass the swim test and get your yellow band to be able to go in the deep end. Luckily we all passed and got our yellow bands!!!

This is one of my favorite pictures from our trip. I know Nate senses how sick Larry is and would often just follow him around and want to hold his hand and just hug him. In this picture Nate was scratching Larry's back to help relieve the itching from the jaundice while they listen to the Fablehaven series. They were able to get almost all the way through the fourth series.