Neoendocrine Pancreatic Cancer

The most common type of pancreatic cancer is an exocrine tumor called adenocarcinoma. About 9 out of 10 people with pancreatic caner have this type of cancer and this is what Larry was diagnosed with in July. About 7 percent of pancreatic tumors are neuroendocrine tumors (pancreatic NETs or PNETs), also called islet cell tumors. They often grow slower than exorine tumors and the prognosis is better because they are treatable.

Today we received some very shocking news. We have waited eight very long years for a correct diagnosis of Larry's condition and reason for his acute recurring pancreatic attacks. We FINALLY received a diagnosis of adenocarcinoma pancreatic cancer. Even though this was a horrible diagnosis, at least we finally had conclusive answers.

As we have not had the greatest experiences with oncologists, we were both pretty gun shy about going to one again, but we both recognized the importance of having them monitor our cancer markers and assist with pain meds and other health related issues. I recently met a friend in Pocatello (where we do our shopping and our weekly treatments) and I learned that she too was battling stage IV pancreatic cancer. I ask her about her oncologist and she really thought we should give him a try.

A few weeks before our meeting with him we had sent in to have Larry's biopsy sequenced because we were interested in looking at doing some clinical trials and that was one of their requirements. Miraculously, about 30 minutes before our meeting with the new oncologist, Dr. Anderson, Larry received a phone call giving him the results of his biopsy testing. His diagnosis had been changed from adenocarcinoma to neuroendocrine pancreatic cancer. In traditional medicine this is a HUGE deal in terms of treatment. Adenocarcinoma is not very responsive to chemo and that is why we were only given a 2% change of it extending Larry's life for six months, whereas, neuroendocrine pancreatic cancer is still not great, but it responds very well to chemo.

As frustrating as it is to learn about his correct diagnosis four months later (one month after the time period he was given to live), the blessing is that we were able to go to Hope4Cancer and get all of the incredible treatments and education that we have. We really believe if we had received the correct diagnosis in July we would have not made the effort to go to Mexico and went straight to chemo. Because he was in such bad shape at the time, we believe that he likely would not be here with us today.

As we have had four months now to build up his immune system and heal his body, he is more prepared to deal with the rigors of chemo. 

We are scheduled to go to Mexico next Monday the 29th and are very anxious to get a report from them. Our plan as of right now is to go to Mexico and get an assessment from them and then meet with Dr. Anderson next week to start the chemo. Dr. Anderson has also agreed to put a gastro feeding tube in Larry so that he can get that stupid tube out of his nose!

Walk On Faith

 

The other night on our way to the high school football game this song came on the radio. I felt like it perfectly summarized the current chapter of our lives. Every day we walk on faith, trust in love, and keep putting one foot in front of the other.

According to all of the imaging and tests that Larry has had done, we really feel like we have a good handle on the cancer. The results show that the cancer has stayed contained in his liver and pancreas and we have hope that as we continue to move forward with the cancer treatments that we will start to see the cancer that is there start to and eventually disappear. Our biggest current battle is receiving adequate nutrition and keeping Larry's blood sugars stable due to the damage that has been done to his pancreas. In order to get proper nutrition and start putting weight on, Larry has once again had an NJ tube placed (yes, the yucky one the goes through his nose and down his throat). If all goes well with it in the next week or two, he will have surgery to have a more permanent tube placed through his abdomen. Where we have changed his diet to all organic whole foods, that he has responded very well to, we were blessed to find a company called "Kate Farms" that makes organic whole food feeding formula.

After Larry had the NJ tube reinserted we were laying in bed having one of our "pillow talk" discussions and Larry commented that he was started to feel like Job. He has suffered eight years from the debilitating disease of pancreatitis, has been diagnosed with stage IV pancreatic cancer, has recently become an insulin dependent diabetic, and has just had an NJ tube placed once again (something he swore he would never do again after his last experience with one earlier this year). I turned to him and said that I had never wanted to be a nurse either. Just the thought of needles, blood, and body fluids has always made my stomach turn. Nursing was not something I would ever have considered going into, but here we both are facing some of our biggest fears and learning and growing in ways that we never thought possible.

Despite all of the trials we are going through we testify that God is good and we know that he has always been there for us. We have been richly blessed with so much through these experiences and pray that we may continue to walk in faith, trust in love, and keep putting one foot in front of the other!

We Are Finally Home!!!

Life has been such a whirlwind since my last post. I flew home Saturday, September 4th and Spencer flew in to spend the last few days at Hope4Cancer with Larry. Spencer and Larry arrived home on Friday, September 10th. We didn't plan it this way, but Spencer and I just happened to be landing and leaving at the same terminal and we were able to stop for a quick hug and picture. So grateful for God's tender mercies.

Leaving Hope4Cancer was bitter/sweet. Not only did we form some incredible friendships while there, but it was really hard to leave the structure of the center. I came home early to replicate the structure at home the best that I could and I am still working to get things organized and put away. Since Larry has been home we have continued doing the sono machine, red light therapy, the sauna dome (aka pizza oven), enemas, immune boosting and mistletoe shots, daily juicing, a variety of supplements, a specialty diet, and we are doing vitamin c therapy and hyperbaric one time a week in Pocatello. The lifestyle changes have not been easy, but they are making a difference in regards to killing the cancer. Before we left Hope4Cancer the ultrasound showed that the cancer had not shrunk at all, but it was still contained in the pancreas and the few spots on the liver. We were told that we would see the cancer shrinkage at our three month check-up. Larry's blood work at the West Clinic in Pocatello also showed that the cancerous cells that were circulating in his bloodstream prior to the treatments at Hope4Cancer had returned to normal. When we got to Hope4Cancer Larry was too weak to carry our suitcases into the clinic. Larry had a goal to gain his strength back while at Hope4Cancer and take a run down the beach before he left. Through hard work and dedication he was able to accomplish this goal!

Last Sunday evening we were finally able to visit with a lady by the name of Rivi who had been diagnosed with Stage 4 pancreatic cancer seven years ago, had went to Hope4Cancer, is cancer free, and doing great. Her story was party of what inspired us to go to Hope4Cancer. Her big advice to us was to remain vigilant in doing our treatments from the center. Larry has been very diligent in following his plan. She also highly suggested that we eliminate all of the chemical products in our home, including cleaning supplies and products for the body, to get EMF protection, eat only fish from the Atlantic, not from the Pacific, get infusions of 150,000 mg a week of vitamin C, and she reminded us to daily practice emotional therapy by forgiving others and looking at yourself in the mirror everyday and telling yourself that you forgive and love yourself. Talking to Rivi on the phone was very motivating to both Larry & I and gave us hope that we were on the right track to obtain the healing that we both desire.

We were headed in such a promising direction up until last weekend when Larry started having additional health problems, that we have since learned were blood sugar issues. He is now taking insulin with every meal to try and keep himself regulated. I am so grateful that our Type 1 diabetic son, Spencer, is so knowledgeable about regulating blood sugars. His past eight years of experience with it has been an invaluable blessing to Larry at this time. Through much hard work, study, and experimenting Spencer has learned to keep his blood sugars very tightly controlled and he is able to give us expert advice in helping to keep Larry's blood sugars controlled. Despite this incredible setback, I am so amazed at Larry's continual optimism and determination. 

Larry gained two pounds while at Hope4Cancer, but since he has been home, he has started to lose weight.😭This is in part because it has been a challenge for me to learn all new ways of shopping for and preparing foods and partly because his pancreas is very angry and keeps giving him trouble with blood sugar regulation, enzyme production, and pancreatitis. In so many ways I feel like we are back to square one and this has been a very hard blow to both of us emotionally. Tomorrow Larry is scheduled to have an NJ tube (the tube that is placed through your nose and into your small intestine) placed at Logan Regional. After having his last one placed he swore that he would never have one placed again because it is so incredibly uncomfortable, but here we are. God sure knows how to keep a man humble.

Our Bishop gave Larry a Priesthood blessing tonight in preparation for the placement tomorrow. If Larry responds well to the tube then he will have a gastrostomy (surgery to install the feeding tube in his stomach) probably in about a week. I have been extremely emotional through this process as it has been so heartbreaking to watch Larry go from a stocky, muscular man to just a skeleton of what he once was in just a short amount of time. He has lost over 50 pounds in the past year and is now at about 120 pounds. I recognize that this tube placement tomorrow may be the last shot he has at being able to put some weight back on and start building his health back. I pray several times a day that we will continue to see miracles and that Larry's body may continue to heal and have the opportunity to finish raising his children. I know that ultimately that God is in charge and I find peace in knowing that we have done all that we can do.

Spencer & I at the airport

Larry in his bed at the treatment center. Some of the Primary kids from our ward made these hearts for him before we left and they made great decorations for our room!

Some of the incredible staff at Hope4Cancer

Our last walk on the beach together before I left for home

Larry with our good friend, Andy, from Texas

We were able to contact the missionaries while we were there and they came over and gave Larry & I blessings. Two other couples at the center also received priesthood blessings from the missionaries and we had a short lesson on prayer. As we were packing and getting ready to leave for our trip Larry ask me if had any Book of Mormon's that we could give away. I was so hyperfocused on packing for the trip and getting Larry to get to the center for his treatments that this was the furthest thought from my mind. One of our favorite things about Hope4Cancer was the good spirit that was there and the daily discussions that we would have about God and religion. We ended up giving out ten Book of Mormon's while we were there.

More of the yummy food at Hope4Cancer

Our good friends Richard & Debbie from San Diego and Tina & Tom from Wisconsin

Biliary Tube Miracle

This morning we left Oxford at 5:30 in the morning because we had to be at IMC in Murray, UT for Larry's biliary change. When he was sent to IMC by ambulance a few months ago the original intent was to put a stent in his common bile duct to allow his body to drain (he had severe jaundice). Sadly, he was too inflamed and they were unable to get a stent in. They ended up having to drill a hole in his side and put a tube through his liver to allow his bodily fluids to drain. Yes, it was that painful. He described it as feeling like he had been shot in the side with an arrow.😓Not only was it painful and uncomfortable, but we believe that it was causing his liver to act up. Larry would have episodes where he would just start shaking and sweating. He gave us some good scares on a few occasions.

We had high hopes at this visit that they would be able to remove this tube out of his liver and internalize the drain with a stent. When we got there and had our initial consult with the doctor, it did not sound very promising that they would be able to do this. She said that she would try if we would like, but she was just afraid that it wasn't going to be possible. Larry ask her if she would please try and I told her that we had said a prayer for her to be able to make this happen. They told me that the procedure would take 1 - 1/2 hrs.

Forty-five minutes later they came back into the room and told me that the procedure had went beautifully and they were able to put the stent in and remove the tube out of the liver! We feel so grateful that everything went even better than predicted and that Larry's liver can be free from the irritation of that tube.

Larry's Biopsy Results, Nate's Party, & Fundraiser for Larry

Since last Wednesday our family has been through a roller coaster of emotions. We were told that the results from Larry's biopsy would be back in 48 hours which would have been 11:00 am Wed. morning. At 1:00 pm I texted the doctor and he said that he had not heard anything yet. When 5:00 rolled around I just assumed that we would not be hearing back that night. 

Wednesday night we met at the shooting range as a family so that Nate could try out his new gun when he opened it up. As my mind was quite distracted by the unknown results of Larry's biopsy, I forgot to bring the pizza's to Nate's party at the shooting range. I ended up going to a nearby gas station and getting corn dogs for everybody. Nate loved his gun, even though it was almost as big as him, but it was all we could find that was not a cheap gun that was just going to get broken again.

Bekah and I had to leave the party early because she had to get to dance. On our way we stopped by the house when I received a text from Dr. Ott asking if Larry and I could call him at 6:00 pm. We ended up getting on a conference call when we were given the shocking, horrible news that Larry had stage IV pancreatic cancer that had metastasized to his liver. 35+ hospital stays, countless CT scans, several "specialists", history of Larry's grandmother dying of pancreatic cancer at age 49, 40 lb. weight loss in a very short amount of time, jaundice, and knowledge that Larry carried the ATM gene which is known to cause breast and pancreatic cancer, and a wife constantly asking that they made sure that it was not cancer and they missed it! These are the reasons that the news came as such a shock to me.

The doctor suspects that the cancer started eight years ago and was the cause of the pancreatitis. In retrospect the biotoxins that we were exposed to in 2013 likely triggered the ATM which started the cancer process in Larry. The tumor would then cause blockage in the common bile duct which resulted in countless excruciating painful pancreatic attacks that have created total havoc on our lives. All this time we were on the watch for cancer that had developed as a result of the pancreatitis, but we had it backwards the whole time. This would explain the dream that I had the week before we received the tragic news. I rarely remember my dreams, but this one I did. It bothered me so much, that I even called the doctor the next morning to share it with him and the concerns I had.

I dreamed that Larry was at the hospital and they were just moving him around like a rag doll because he had lost so much weight. I just kept thinking they have missed something, they have missed something! I couldn't figure out what the something was. At the end of my dream I ended up winning a 3 million dollar law suit (that is the part of the dream that I did not share with him.😏I ask him if it was possible that the TPN line was not hooked up right and he was not receiving all of his nutrition. It just made no sense to me why Larry's energy had gotten worse on the TPN, his coloring had gotten worse, and his first week on it he lost 8 pounds. Looking back I suspect that the cancer was having a hay day coming from all of those feedings. The sugar in the TPN is so high that you actually inject insulin into the feedings because the sugar content is so high (we were doing about 50 cc of insulin per feeding).

We decided to talk to the children about the news at about 8:00 when everybody could be there and we could have Dallin and Alyssa on a conference call. I don't know if they were too taken by surprise as they knew something was up. I wish that I had recorded the things that Larry had said to the children because it was beautiful. Essentially he explained to them that he was very sick and may only be with our family for a few more short months in this life. He told them that it was not his desire to leave our family, but he was not afraid to die and return to the arms of his Savior. He reminded them that our separation would only be temporary as we had been sealed as an eternal family and would be together again if we lived worthily to do so.

After many tears were shed we had some really good laughs about a lot of different things. Some of the boys expressed a desire to take over the business and carry on the legacy of their father. I told them that they had better marry a good bookkeeper! After sharing the news publicly we received the news we received dozens of messages, phone calls, and we even had a couple of visitors stop by. It was very funny to me to watch Spencer baking and passing around plates of deliciously seasoned vegetable to our guests where most people would have served cookies. Spencer has done a phenomenal job at managing his Type 1 diabetes through diet and has had a very positive influence in our family in helping us to eat more healthy.

Thursday morning we left for the Logan temple where we performed proxy sealings. It was a very tender moment taking each other by the hand, kneeling across the alter from each other, and looking at our reflections in the temple mirrors as we were reminded of the covenants that we made to God and each other 23 years prior. These covenants took on an extra special meaning after the news that we had received the night before. People must have wondered why we had tears streaming down both of our faces, but this was a moment that brought so many uncontrollable emotions to the surface. We then spent the rest of the afternoon running errands and picking up products to begin our battle against cancer. It may not have been the news that we were hoping for, but at least now we knew what we were up against!

Thursday night we were pleasantly surprised when Dallin and Alyssa showed up at our house. Dallin had told his boss about the news about Larry and he told him to take Friday and the weekend off and go see his family. Larry had a really bad night, having another shaking episode like he had had right after the biopsy, and Dallin was so kind to take care of him through the night. From the reading I have done this is likely a result of a liver that is struggling.

Coming to visit us was an especially big sacrifice for Alyssa because she is due to have her baby any day now and was taking the risk of going into labor while they were away from home. They had already made the decision that if something were to happen they would go to the Logan hospital. Luckily, she didn't go into labor and they were able to make it home. She is scheduled to be induced on August 6th if they have not had her by that time. Dallin and Alyssa brought Larry and I each a prompted life history journal so that we could both start writing our family history. It was so sweet and thoughtful of them.

Saturday was pioneer day where they celebrate the arrival of the pioneers into the valley. As part of that celebration in Weston they do a benefit dinner for a family in need. This year we were very touched when they ask if they could do it for our family. It is hard to put into words the strength that you feel when your community comes out to support you in this way. It was so great to visit with so many of our friends and family and share some good times together. They said that they planned to serve 400 people, but ended up running to get more foods as they ended up serving 500 people. We appreciate all of those who came and went through all of the work of putting together such an amazing meal. Thank you, thank you, thank you!

On Sunday our lesson during relief society was on miracles. As we are continue to hope and pray for a miracle that Larry will be healed and be granted more time to be with us, this lesson hit very close to home to me. Our situation was mentioned several times throughout the lesson and the support and love I felt from the sisters in the room really helped to buoy me up. 

Today Larry started his IV therapy with Dr. West. On the way there he was so tired and non talkative. I was so happy to see him perked up and so alive after his treatment. I knew Larry was feeling better when he wanted me to stop and help somebody along side the road who had broken down. EverAfter visiting with Dr. West I have a lot of hope that these treatments may be able to both increase his quality and quantity of life. Tomorrow Larry starts with the hypobarrics.

Meeting with Oncologist

Even though Larry and I knew that we would likely choose not to go the traditional route of chemo and radiation we chose to meet with an oncologist anyway, just to make sure that we had covered all of our bases and weren't missing something. We ended up meeting with him for about three hours, and even though we did learn a lot, it turned out to be one of the most discouraging and depressing meetings of our lives.

We discussed everything from all of the options available for treatment to preparing for Larry's passing. It was hard, and even discouraging, to actually see the tumors and cancer on the imaging that the oncologist shared with us. It just made everything too real to actually physically be able to see the enemy that we are fighting.

The hope that the oncologist gave us in the medical field was maybe a year to live, instead of the three months that we had been given, if we were to do chemo and radiation. If we were to go down that road, however, there was a whole host of horrible side effects, including death. In our minds why would we want to spend the very limited amount of time we had left with Larry sick from the chemo and radiation and the possibility of dying anyway from the treatment. 

As we shared with him the different treatments we were doing (organic fruits & vegetables/juicing, vitamin c infusions, hyberbaric chamber, B17, essiac tea, plant based minerals, milk thistle, fenbendazole, etc), and our intent to go to a cancer treatment center in Mexico, he shot down all of them, including stories and his experiences of how these were false hopes. As these things were the only things giving us hope for healing and remission it was very hard on both of us to have the hope we had smashed into a million pieces.

When we returned to the car, it took us a good 30 minutes to even be able to compose ourselves enough to drive anywhere. Larry was crying inconsolably because he really wanted to be here to raise his children and did not want to leave them without a Father. I was finally able to dig deep into my emotions and remind Larry that we needed to change our paradigm. Before we went into that meeting we were full of optimism and hope and I knew that to have any chance of fighting this we needed to find that again. I also reminded him that we needed to believe what we could see with our own eyes. We had seen improvements and progress towards healing with the treatments that we were doing and we needed to keep believing that they could work and keep hoping and praying for a miracle.

Even though it took us a few days to get our heads on straight, we are now stronger than we were and more determined than ever to fight and beat the cancer that is trying to take over his body. We recognize that we have all the odds stacked against us statistically (stage IV pancreatic cancer that has metastasized to the liver, coupled with the complications from pancreatitis), but we are going to put in the work and trust that if it is God's will we will see a miracle! With God's help we know that all things are possible.

Trip to NV, Biopsy, & Nate's Birthday

It has been a long weekend and an even longer day. The day started at 5 am, leaving for Salt Lake at 6:30, and getting home at about 10.

Before I knew about all of the latest things going on with Larry, I had planned a trip to go and visit my sister, Janice, in NV. With Larry's appointment being today, I made the decision to still go last minute even though I knew it would be a quick trip and a lot of driving. I'm glad I went, as I don't get to see my sister very often, and it helped keep my mind off of today's procedures. We were greeted with warm hugs, delicious food, and were able to take a tour of the back country surrounding Mina. The kids and I also got to listen to the complete Unabridged version of "Where the Red Fern Grows" and Anne of Greene Gables" and we sang the Nevada state song over and over again so that I could learn it. Funny story--Nate's second grade teacher, Mrs. Wait, is also from NV. She taught her class the ID state song immediately followed by the NV state song. The whole class even sang it to me when I came in to help in the class one time. Sadly, I did not know most of the words to my own state song until now!

We got home from our trip last night at about 8 pm. At about 8:30 we had a whole support team show up at our house. We spent about an hour talking, reminiscing, and telling stories. Before they left Larry and I were given priesthood blessings (a priesthood blessing in The Church of Jesus Christ of Latter-day Saints is a prayer for healing, comfort, or counsel given by a Melchizedek Priesthood holder, who lays his hands on the head of the person receiving the blessing) to help us face the upcoming giants that we had awaiting us. Truly we have been so blessed to be surrounded by so many wonderful people. If Larry's healing was only conditional upon people's love and concern for him and our family, complete healing would have happened a long time ago.

After a two hour drive this morning, we arrived at Larry's appointment to have his biliary tube changed and have the long awaited biopsy performed. We even wore our matching, newly purchased "Pancreatitis Warrior" t-shirts (be sure and enlarge the picture and you will see a perfect description of life with pancreatitis). Somebody put a link for this on the pancreatic facebook page that I am a part of and I just had to order them as they represent my family so well. Do you know how many times my boys and Larry have said, "I'm Fine" when they are critically injured or on their death bed? Just recently when Enoch had the emergency eye surgery for his accident the first words he said after coming out of anesthesia were, "I'm Fine!" as he immediately conked back out on his pillow. Before Larry left for the procedures it broke my heart when he said, "You know if they find cancer, it is pretty much a death sentence." This is something we have mostly avoided talking about through this whole process. What we did learn today is that the growth on Larry's liver is not an abscess and we will not have the results as to whether or not it is cancerous until Wednesday. I am still holding out hope that it is a benign growth which can be a consequence of having pancreatitis. Maybe everything won't be fine in the way that we want it to be, but because of the gospel of Jesus Christ everything will turn out fine in the end.

Today was Nate's 8th birthday! It was certainly not my vote to have this procedure on his special day, but I am so grateful to my good friend Talina, who took him under her wing and helped make it such a fun day for him! Honestly, I'm not even sure that he missed us or noticed that we weren't there because he had such a fun filled day and she even helped him make his own birthday cake!!! In light of other good news, Nate's cousin, Jessica, had her baby today (on Nate's birthday). I sent a picture of the baby to Talina to share the good news with him. Nate's response was, "Awe, I have a twin! He then turned to his friends and said, "Hey guys, guess what I got for my birthday!?"💙 We were released from the hospital at 1:30 and the plan was for us to do some shopping on the way home and have pizza, cake, and presents when we got home. Like Dr. Ott commented at the hospital, Larry's case is an anomaly and the events that took place on our trip home would help support that narrative.

After leaving the hospital I ask Larry what he thought we should get Nate for his birthday. After about a half hour he commented that we should buy him a high quality BB gun. He had received a cheap daisy BB gun for Christmas and it broke in half after just a few uses. Larry mustered up his remaining energy for the day and spent a good half hour shopping for the perfect gun for his boy. I then made a trip into Walmart when we got to Brigham City to buy wrapping paper and pizzas for our party. Upon returning to the car I became very concerned about Larry. He was shaking uncontrollably, had turned off the a/c in the 100+ degree car, and he felt like he had a fever. I called Dr. Ott and he told me to drive to Logan and take him to the ER as sometimes people have reactions to the procedure that he had just received. 

After dropping Larry off at the ER, I called a friend and was able to take my refrigerated food to her house so it wouldn't spoil in the heat. I then returned to the ER where they ran more tests on Larry and performed another CT (ugh!) on him. After a bag of fluids, and receiving all of the test results back, he was cleared to go home as everything had returned to normal. We arrived home at about 10:00--just in time to get his feeding bag ready again and spend some time with the children before putting them to bed. I think we will sleep very well tonight (or at least I will, Larry is still struggling to get his pain under control😓).

Results of Larry's CT Scan

It is early in the morning, but the results of Larry's CT scan, that we received yesterday, weigh heavily on my mind. We received some very good news and some very unsettling news. The good news is that our prayers are being answered and the inflammation in Larry's pancreas has gone down down, despite the fact that he feels like he has had some mini pancreatic attacks likely from the smoke in the air.

The unsettling news is that they have found two spots on his liver that are either abscess's, which is a common side effect of chronic pancreatitis, or cancer that has likely come from his pancreas. The doctor said that typically you will see a fever and elevated white blood count with the abscess's, which Larry has neither. With that being said, Larry often does not present with the "typical" symptoms which could be the case in this situation. When he was admitted to the U of U back in January, they diagnosed him as having abscess's and he was on a very strong antibiotic regimen for a couple of months. If my memory serves me correctly, that despite the awful side effects of the antibiotics, the abscess's did resolve. I don't remember them biopsying the spots on his liver at that time, so my other thought is that it was possibly cancer back in January and they missed it. We were very adamant during that hospital stay that they be extremely thorough in ruling out cancer, including having an MRI done, and they assured us that there were no signs of cancer.

If it is cancer, that could explain his continued pain and weight loss. They will be doing a biopsy on Monday to determine if it is cancer. The doctor said that if it is abscess's, he will be immediately admitted to the hospital for three days and started on an antibiotic treatment. If it is cancer then we are looking at the chemo route. The one other scenario that I have thought of is that it could be a benign tumor, which in my mind would possibly be the best case scenario unless they are causing problems by pressing on blood vessels or nerves. There are so many questions yet to be answered.

Through this eight year process, Larry's life has been preserved repeatedly. I just have a hard time believing that the Lord has brought us this far, and miraculously opened up so many doors for us to have the TP/IAT surgery so that we can have a shot at a normal life, to have it all fall apart at this stage in the game. With that being said, I have prayed repeatedly that if it is the Lord's will that the doors will continue to open and if it is not the Lord's will that the doors will close. As hard and scary as it is, I have to continue to trust in the Lord and his timing, knowing that things will come together according to his will and timing and that he will allow all things to work together for our good. As I have watched the hand of the Lord in my life through the years, I have learned that the Lord can see things that I often cannot see and things happen for a reason.

Needless to say, it is going to be a long weekend and Monday cannot come soon enough!

The Real World, TPN 101, & Guitar Lessons

The highlight of our week was attending the Logan, UT temple last Friday to do proxy sealings with a group of friends. Due to all of the covid restrictions, it has been a very long time since we have had this opportunity. The Spirit there was so strong and the feeling of peace was incredible. As we got onto the the elevator, after our session, and were heading downstairs, I made the comment that it was going to be hard to go back to the "real world". One of my friends commented that being at the temple was the "real world". What an awesome reminder of how this earth life is just a test and in the end, if we stay on the covenant path, this will be our permanent reality.

In regards to Larry's health, he has been able to maintain his weight of 143 lbs. for the past couple of weeks, which is great news after the initial 8 pound loss he had after starting the TPN a little over a month ago. He is now the same size as Spencer and luckily Spencer has extra clothes that he has been able to borrow, including an extra suit for church. They adjusted his formula for the third time this week which has significantly reduced the insulin he is having to take, as the amount in the sugars has been significantly reduced and his protein has increased. Unfortunately, his energy and stamina have yet to return.

Last night Larry had a rough night's sleep as he was up a lot in level 7 pain in his middle to lower back (typical spot for pancreatic pain). He also had an episode yesterday that felt like a pancreatic attack. He will be having blood work drawn tomorrow and a CT scan on Tuesday to get a better picture of what is going on. A couple of thoughts we have had is that possibly his biliary drain, that he had placed at his last hospital stay, is giving him trouble or Larry had the thought that possibly the smoke in the air is causing his pancreas to act up. Through the years there have been so many factors from environment, to foods, to stress, that have caused these flare-ups, smoke being one of them. 

As Larry is currently not able to eat or drink anything by mouth, except for a small sip of water with his morning pills, finding solutions to help get the inflammation in his pancreas down can be tricky. After asking for possible solutions on a face book group that I am a part of, I received the following ideas: coffee enema, DDR prime essential oil (the main ingredient in this is Frankincense which I have been using), laser treatment (thanks to Larry's brother we just happen to have one and have started using it), Renu 28 (have this and have started using it), gi gong doctor (specialize in helping to heal the body by moving the qi-life force). I love gathering other people's ideas because through the years some of the most helpful ideas, in regards to our health struggles, have come from people that I am surrounded by.

The whole TPN lifestyle can get very wearing and old for all of us, but it is our hope that allowing the pancreas to completely rest will give us the desired result of significantly reduced pancreatic inflammation, so we continue on with this process. I especially feel sorry for Larry who has missed out on so many delicious meals because of his restrictions. I am so impressed with his self control and cheery attitude through it all. In the beginning I was terrified and extremely reluctant to learn the TPN process, as this feeding goes through a pic line that runs through his heart. There is so much to remember and so much that can go wrong. I am happy to report, however, that I could now almost do it in my sleep and we have remained infection free thus far (keeping my fingers crossed)! 

As some of you reading this blog may be experiencing the same thing, I want to assure you that if I can do it anybody can do it, and it is not as scary as it initially seems. It has really helped me to get my younger kids involved in the process. The steps that we go through everyday to make it all happen are:

1. Get TPN bag out of fridge at least an hour before we start his feeding (you don't want a cold liquid running through his heart).

2. Insert the vitamins and insulin into the bag using a syringe, making sure that there are no air bubbles in your syringe. Nate and Rachel love disposing of the needles into what Nate has named "the red gas can". I then shake the bag for 30+ seconds to distribute the vitamins and insulin throughout the formula.

3. "Spike" the bag and insert the tube for the feeding into the bag. We have to hold the bag up and prime the tube making sure that we get all of the air bubbles out. While we are doing this, Nate has learned to change the batteries in the pump that have to be changed on a daily basis. We also go through several alcohol wipes making sure that anything that is touched or exposed remains completely sterile.

4. Strap the bag of formula into Larry's backpack. We have termed this process "strapping the baby into it's car seat"and then thread the tubing into his machine and set it by Larry's recliner so that he can start the machine when he is ready. 

These feedings take 14 hours a day. Ideally he starts the feedings at 6:00 pm and is finished by 8:00 am, but it doesn't always go as planned. As long as Larry is not on pain meds, he can set things up for himself, but we try to support him as much as we are able because it is a very monotonous process and I know that it really helps him to keep going to have the support.

Last Christmas Enoch bought Larry a guitar so that he could learn to play. Now that he has significantly had to reduce his time at work, he has had more time for things like this. It was so fun tonight to watch Enoch giving his Dad guitar lessons. This has been a fun skill to help pass the time as he has been so restricted in his ability to do everything that he is used to doing. Can't wait until he is serenading me with romantic love songs!

Happy Birthday America!!!

I love celebrating the birth of this country that I LOVE so much! I was so lucky to be born on July 3rd and every year I get to celebrate my birthday in conjunction with all of the 4th of July festivities! For the past several years, we have celebrated the 4th of July in Malad with our family. Normally we go to the parade, the shoot-out, followed by delicious BBQ food at his brother's house, sometimes the melodrama in the afternoon, Malad's Got Talent, and fireworks after dark! Due to Larry's health, we had a very scaled back version of our normal activities. Larry was only able to make it to the parade and he didn't even make it to the meladrama play with me in the afternoon that he was hoping to go with me to for my birthday. I was very surprised, however, when we got home from the play, and I walked into the kitchen where Larry was holding a cake with candles and everyone yelled surprise! Sadly, Larry was not able to eat any of the cake or any of the other delicious food that we had to eat. He said this was the most tempted he has been to eat since he started the TPN feedings. 

Through this process I think we have both developed a love/hate relationship with food. I have always tried to feed my family healthy. What I consider to be healthy has changed over the years, but dealing with the extremely unpredictable side effects of pancreatitis, has about killed my love or desire for cooking. I will cook a meal that he was fine with the day before and he gets to the dinner table and says he can't eat it. I will cook a meal that fits all of the "normal" pancreatitis friendly foods (low-fat, fruits, vegetables, whole grains, legumes, and healthy fats with careful portion control) and we could still end up in the hospital. The worst is when we would go out to eat together (something that I would really look forward to) and I would end up eating by myself because he wasn't able to eat anything. It has truly been a maddening experience for both of us! I look forward to the day when I get the courage to pull out my cookbook once again and have confidence that dinnertime will not end with a trip to the hospital.

Larry has only had a couple of good days since being on the TPN and of great concern has been his continued weight loss. About three days ago the doctor increased his feedings by 500 calories a day. He seems to be doing better on the increased calories and I am praying that we are turning a corner. I also pray everyday that the inflammation in his pancreas will significantly decrease (or even go away would be fine with me) before our next CT scan which is scheduled in a few weeks. I also pray that his body will get stronger so that he will be able to withstand the rigors of his upcoming, life changing surgery.

Even though we are facing some extreme challenges, I still count my blessings everyday because we have truly been richly blessed. Just the fact that we have the opportunity to have this surgery and have a new shot at life is a miracle to me. I have also been truly amazed at the doors that have been opened for this surgery to happen, both financially and with our temporal needs being met. We are both so grateful to God for all of the wonderful family and friends that we are surrounded by. Your love and prayers have truly sustained us through these very difficult times and for that we are grateful.

  

Blessing, Trials, & Weston Fund Raiser

Blessings of the week:

1. Larry was able to make it to 6 am Bishopric meeting, conduct Sacrament meeting, and stay for all two hours of church after only being gone for a week! As his TPN feeding takes 14 hrs. to run we had to start his feeding on Saturday at 3 pm, but he was able to do it. He also crashed for a couple of hours when he got home. He loves serving in this capacity so this was a great blessing to him.

2. Larry's blood sugars have been very controlled this week. As the feedings for the TPN run straight through your veins they cause your blood sugars to be high and we have to inject insulin as part of his feedings (prior to starting TPN Larry has never used insulin before). We started the week by inject 70 units into his bag, but he was dropping down into the 60's for his blood sugars so we have adjusted the insulin to 60 units. His blood sugars outside of the TPN feedings have been fairly normal which is a great blessing.

3. Larry was able to make it into work one day this week for a couple of hours. As the TPN feeding is straight fluid going through your body, he usually has to go to the bathroom about once per hour. As he does these feedings at night, it does not make for a good nights sleep so it has been hard for him to feel very energetic. As the feed store has been his life for the past fourteen years, he has the desire to be there everyday, but we were grateful that he had the strength and energy to make it in on one of the days. We are also still working out all of the kinks for the remote computer access that we have set up so that he can do paperwork from our home or the hospital.

4. Larry has gotten a pretty cool watering system set up in our garden area. Larry is usually up and has some energy by 4 or 5 in the morning. Luckily, he has a backpack that he can put on and travel around with and by this time in the morning the backpack is lite enough (the formula in the beginning is pretty heavy) that he is able to go out for a few hours and putter around the yard while it is still cool.

5. My kids are learning a lot about compassion and how to help someone who needs medical care. I think my little guys could about flush and start the feeding lines themselves at this point.

6. We had a friend reach out to us and ask if they could do the yearly Weston fund raiser for Larry this year. We were really touched that they would think of our family. We go to this fundraiser dinner and 24th of July celebration every year and it is always so much fun (see below for fundraiser advertisement)!!!

Trials of the week:

1. Larry has lost another five pounds. It has been very hard to watch him go from this stalky, strong man to being so skinny with little to no fat. I notice a few days ago that his cheek bones are sunken in (so sad). He is getting 2,500 ml of formula a day through his tube, but I am not sure what the conversion is to calories. My hope when he was first put on the TPN was that it would help him gain weight, but at this point I would be thrilled if it would just help him maintain his current weight of 135 lbs. He was 185 lbs. when all of this started last Fall.

2. The back pain continues, especially at night. Luckily, he is able to get through it without taking the heavy duty meds. It has really helped to have muscle rub rubbed into his back every night.

Weston 24th of July Celebration Fund Raiser

Larry Ward grew up in Malad, ID and has been a resident of Franklin County since 2016. He is the owner of Ward Feed & Seed in Malad and is the father of seven children--Dallin, Spencer, Enoch, Ben, Bekah, Rachel, and Nate. Due to a toxic exposure in 2013, Larry started having pancreatic attacks. Since that time, his life been extremely unpredictable and to date he has been hospitalized 35 times to manage the excruciating pain and allow him to be on IV's as he is not able to have anything by mouth until the inflammation has resolved. This can take anywhere from a day, to a week, to several months.

For six years he suffered from acute attacks (a sudden and short bout of pancreatic inflammation), but after about a year and a half break from the attacks, they came back with a vengeance in the Fall of 2020 and Larry lost about 50 lbs. within a few short months due to his inability to eat and digest foods. He has since been diagnosed with chronic pancreatitis (ongoing inflammation) and is in constant pain, especially at nighttime. He also recently suffered from a necrotizing attack (where part of his pancreas has died).

About five years ago we were introduced to a procedure called TPAIT (total Pancreatectomy and Autologous Islet Cell Transplant). During this procedure, the surgeon removes the pancreas, harvests those insulin-secreting islet cells from the pancreas, then reinfuses those cells back into the liver where they find a home and help manage blood sugar by secreting insulin.

When we were first introduced to this surgery, we tucked the possibility in the back of our minds and now realize that it is time to move forward with this surgery. As this is a very invasive and life changing surgery, we have been very apprehensive about moving forward, but after our most recent hospital stay at IMC we know that it is time. We learned that a good portion of his pancreas has already died and is now affecting his small intestine. He had developed jaundice as a result of his common bile duct being completely blocked from the severe inflammation and they were unable to put a stent in like they would normally do. He was put on Total parenteral nutrition (TPN) feedings. This method of feeding bypasses the gastrointestinal tract and fluids are given into a vein to provide most of the nutrients that the body needs and he has had a tube placed to allow for normal drainage. He is also not allowed to have anything to eat or drink by mouth. All of these things will remain in place until his surgery that is scheduled for early September.

Life after the surgery will still remain a challenge, as he will likely be somewhat insulin dependent and digestive enzyme dependent for the rest of his life. The hope is that he will be able to have a much better quality of life after this surgery and avoid the pancreatic cancer that runs in his family.

As this is a very specialty surgery we will be spending two months at the University of Minnesota and will slowly get back to normal activities over a years time. Approximately 800 people have had this surgery and the majority of people do very well and go on to lead normal lives.

This is an extremely costly surgery and our portion of the surgery will be $75,000 plus we estimate about $10,000 in costs for lodging, travel, and other costs associated with this surgery. We appreciate so much everyone's love and support and to date have been able to raise almost $67,000, and only have $18,000 to go to meet our goal! To donate please visit https://gofund.me/8489ab79 or venmo @Larrysurgery. To follow our story visit jillshope.blogspot.com.

Post IMC Hospital Stay

Things have been such a roller coaster ride since leaving the IMC almost two weeks ago. Larry has had a few good days, but has been in pain a lot and for the most part has just not felt well. I have had additional nursing responsibilities added to my already crazy schedule and I have gotten way out of my comfort zone in learning my new responsibilities.

After leaving the hospital, Larry was still struggling to keep his pain under control and regain his stamina. The majority of the pain was from the tube that they had to put in twice to allow his body to drain out his biliary fluids that had gotten backed up. He described the pain from this surgery feeling like he had been shot in his side with an arrow. Today we had to go back to the hospital and have a bigger tube put in and they made the drainage exclusively internal instead of being partly external. Unfortunately, this procedure irritated an already painful area and Larry has been in excruciating pain, even on heavy duty pain killers, since leaving the hospital. It is so hard to be a bystander and feel so helpless to know how to help somebody that you love.

We have been told that the pain should subside in a few days and the hope is that Larry will start to feel better once his body adapts to the tube and once he is able to drain internally instead of losing so many fluids externally. As he is now receiving 2,500 calories by Total Parenteral Nutrition (TPN), that is administered through a pic line going to his heart that bypasses the gastrointestinal tract, we are also hopeful that he will start gaining wait and stamina in preparation for his upcoming surgery that is scheduled for September. In order to allow his pancreas as much rest as possible he is not allowed to have anything to eat or drink by mouth until that time other than a sip of water everyday that he has to take to swallow his medications. These restrictions have been extremely difficult, especially because our house is full of seven other people who are constantly cooking and eating food. Larry has more self control and determination than anybody that I know.

In Larry's patriarchal blessing (a special blessing given to individual members of the Church of Jesus Christ of Latter Day Saints whose purpose is to partly give counsel and lifelong guidance) it says something to the effect that Larry has great things to accomplish on this earth and that Satan knows his capabilities and will do all in his power to prevent him from accomplishing his foreordinations. It goes on to say that he will have many, many trials on this earth and that he will be loved by all that he comes in contact with. He is told that, that love will carry him through the many trials. Through these experiences that we have had with pancreatitis, we have experienced many, many trials and the love and support we have felt from so many of our family, friends, and acquaintances have truly carried us through these many trials. I stand in awe as I witness these parts of his blessing being fulfilled.

One of the things that I have been so impressed with is how in touch the people we are surrounded by are with listening to and acting on inspirations they receive from the Holy Ghost. We have been the recipients of help with our children, delicious meals, help with our business, help with household responsibilities, and a host of other things and, usually just at the time that we need it. I could share so many specific examples, but I will just share a couple.

A few months ago when I was at an appointment out of town with Larry, I had a friend from our ward call and say that she had made some homemade bread and was on her way to our house to drop it off. After thanking her for her very kind gesture, I told her that we weren't home, but she would be welcome to leave it on the kitchen table. Right after I got off the phone with her, my seven year old son called crying hysterically because he was scared as he had accidentally ridden the bus home instead of going to the activity that he was supposed to go to. Miraculously, my friend showed up at my house a few minutes later and was able to comfort him and give him a ride to his activity. This was such a testimony to me that God is in the details of our lives.

After returning home from our most recent hospital stay, I was terrified to start learning and helping Larry with his pic line and biliary drain. Even though I had learned to do feeding tubes with some of my A-T children, this was way out of my comfort zone. A lady in my ward named Janis insisted on coming over and learning these skills with me. I wanted to tell her no, but she wouldn't take no for an answer and I didn't know at the time how badly I needed her support. She came to all four days of training that we had with our in-home nurses and assisted me with the first couple of times on my own. This was such a comfort to me. I have also been able to call her for back-up during times that I am not able to be here. I am so grateful to her for being there when I needed her.

Most recently, we have been the recipients of a lot of financial help and support. In a little over two weeks, and through the generosity of so many people, we have miraculously been able to raise close to $67,000 of the $85,000 that we need to go to the University of Minnesota in September for Larry's TP/IAT surgery where he will have his diseased pancreas removed and they will inject his islet cells into his liver with the hope that the liver will start producing insulin. In the last two days, I have also learned that they will be running the Oxford 5k in Larry's behalf and the annual 24th of July dinner in Weston will also be donated to Larry's surgery fund. The love and support that we feel from our community is overwhelming.

One of the most difficult aspects of living with pancreatitis is the constant disruption of plans and daily living. Larry very rarely cries, but he did on Sunday. He is the 1st counselor in our Bishopric and he finds great joy and fulfillment in serving in this capacity. He went to bed early on Saturday night and was very determined to at least make it to Bishopric meeting in the morning. He ended up having to take a pain killer at 4 a.m. and text the Bishop that he was not going to be able to be there. He just felt so discouraged at not being able to physically accomplish so many of the things that he had hoped to do throughout the week and missing Bishopric meeting was the breaking point. We ended up having a good discussion on focusing on the things that he could do rather than pointlessly being discouraged about the things that he couldn't.

For Larry's Father's Day gift, the children and I planned to organize his tool shed for him as he has been spending a lot more time at home. Unfortunately, due to many unforeseen happenings happenings of the week, especially in regards to Larry's health, we only got about half of it done. I just have to learn to be ok with it and keep plugging along at getting it finished as soon as I can.

We had also planned to go to TX as a family to visit Enoch's mission. Because of the accident that happened with Enoch's eye, our original trip had gotten cancelled. The new plan was for just Larry and Enoch to fly out to TX and spend a few days out there together, but when Larry got sick again and ended up in the hospital we had to make yet another new plan. The next plan was for me to go to TX with Enoch. When we learned about the procedure last Friday afternoon that Larry had to have done today I knew that I was not going to be able to go. As I was really looking forward to getting away for a few days and spending some time with Enoch, I was so disappointed to come to this conclusion, but I have had to learn to be flexible and patient through the pancreatitis that we have lived with for the past eight years.

We are FINALLY headed home!!!

After almost a week at IMC in Murray, UT Larry now has biliary drainage, a pic line inserted for his TPN feedings, his itching has mostly subsided, he has been given a round of antibiotics, insulin injections are in place, he has his pain under control, and we are headed home soon!!!

Tonight a nurse will meet us at our house and get us set up and started with his feedings and other procedures. I feel so much gratitude in my heart for all of the medical professionals involved in our care that have helped get us to this point. I also felt gratitude to my Heavenly Father for preserving Larry's life once again.

Larry will do his feedings through the night and ideally be able to function fairly normal throughout the day. We will have a repeat CT scan in six weeks and pray that the inflammation may be significantly reduced. The ultimate goal is to get to the University of MN for surgery asap. He is currently penciled in for September 3rd at which time he will have a TPIAT (total pancreatectomy with islet autotransplantation). During this 10-12 hour surgery they will completely remove his diseased pancreas, take out his islet cells that make insulin, and put those cells into his liver with the expectation that the liver will start making insulin in place of the pancreas.

Go Fund Me for Larry

We knew that things were becoming very dire in relation to Larry and his diseased pancreas. Luckily, we had been inspired to have already started the intake process with the University of Minnesota. We had to send them all of his medical records, go through their financial department, meet with four different specialists over zoom (one of the blessings of Covid), and be approved for the surgery by a team of doctors. In order for Larry to have surgery done at the University of Minnesota, we have to have $75,000 in the account they have set up for him before they are able to perform the surgery.

His recent hospital stay and imaging was very alarming as it showed how much of his pancreas and now  small intestine have already necrosed (died). These finding greatly expedited our efforts to get to Minnesota as soon as possible. He is currently penciled in for the surgery for September 3rd.

We wish we could do the surgery tomorrow, but we have to wait for his inflammation to significantly go down before he is able to have surgery. Our specific prayer at this time is that his inflammation will go down quickly and that he will be able to have to surgery as soon as possible in order to avoid complications of the treatments he is having to do (antibiotics, biliary drain, insulin, and TPN) in order to even make it to surgery.

Our son, Spencer, created and posted the Go Fund Me last Monday night. Miraculously, thanks to the many generous and loving people that we are surrounded by, we are almost to $60,000 (the go fund me page does not reflect everything that we have received through venmo and private donations)!!! The nurse at the University of Minnesota expressed concern that even if they could do the surgery earlier that we would not have the funds. I told her, "Louise we will have the money"! I could say that with confidence because the Lord has ALWAYS helped us pull through when it seemed like an impossible situation.

We are so grateful to EVERYONE who has supported our family in moving forward with what we have decided is the best option for Larry to be able to heal and live his best life possible! Our hearts are overflowing at the love and support that we have felt.

To donate you can venmo donations to @Larrysurgery or go to the following site.

https://www.gofundme.com/f/help-fund-larrys-pancreas-surgery?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cf%20share-flow-1&fbclid=IwAR3DVr3Ttg3C-oTb1sMWf0s9UJaRyOW4BUYB6rFPUCwkCj9TC9V3Q55z40Q

Another Trip to the Hospital

We went to the ER in Logan on Sunday afternoon because Larry's skin color was yellow, he had been itching from head to toe for several days, and he was having severe abdominal pain. After all of the blood work, an ultrasound, and an MRI we learned that our situation was way more serious than we had thought. We learned that there was an almost complete bile obstruction that was causing the jaundice. This was the root cause of his severe itching. Normal bilirubin counts are 1+ and Larry was 8+. He was taken by ambulance to IMC in Murray, UT.

Yesterday they went in to do an ERCP to replace the pancreatic stent that was missing, but were unable to put one in because the inflammation was so severe. We also learned that the necrotizing (death of tissues) was more severe than we had realized and is now affecting both the pancreas and small intestine. He also has several infectious spots on the liver that are being treated antibiotics. In order to allow the bile to drain from his body he had a tube surgically inserted into the liver.

He is scheduled for a TPIAT (total pancreatectomy with islet auto transplantation) at the beginning of September at the University of Minnesota where they will remove his pancreas and then harvest his islet cells and inject them into the liver. During this procedure, the pancreas is removed and the islet cells are separated from the pancreas. Those cells will be returned to his body using an injection into the liver. There they will take root and continue to produce insulin, decreasing the chances for diabetes. This surgery takes approximately twelve hours. He will stay in the hospital for the first couple of weeks and then we will have to stay near the University of Minnesota for six more weeks for his post op care.

Due to the severe damage that has been done to his pancreas over the past eight years, he is in a higher risk category for surgical complications and the most important thing we can do at this point is to get his inflammation down as much as possible and pray that we can get to the surgery without any future pancreatic attacks.

We met with the Surgeon and Director of Medicine, Dr. Ott, this morning and our new plan is as follows:

• Have a pic line placed for total parenteral nutrition (TPN). This is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. This method of feeding will allow the pancreas to completely rest and get the inflammation down.
• Start regularly checking blood sugar levels
• Keep the biliary line in place until the surgery in September.
• Run a coarse of antibiotics to keep the infectious spots at bay.

This last episode has been a roller coaster ride in so many ways and we are both just ready to have this eight year pancreatic nightmare come to an end. If all goes well he will be home by Thursday.

Even though it has been a very difficult couple of days, we have witnessed many miracles and tender mercies and we feel very grateful to Heavenly Father and his watchful eye over us.