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.

If Thou Endure Well

 

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

Enoch's Eye Check-Up

 We received such great news today about Enoch's eye that recently had a piece of metal slice through it and lodge itself in the back of his eye. After having emergency surgery, we were not exactly sure what the outcome would be. The doctor said it was a miracle that he was not blind from the accident. Even though the bubble in his eye is still present (it usually goes away after only 4-5 days), his vision is now 20/30!!! Still praying for a complete recovery, but so grateful for the healing that he has been blessed with.

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.

The Love of a Mother

 

Faith Not To Be Healed

 

A Day In The Life Of A Special Needs Parent

When you are raising young children/infants you make it through that phase of the life cycle knowing that the struggles associated with that stage of life will end, but when you have special needs children the extra demands placed on you physically, financially , and emotionally often do not end, in fact the challenges are often escalated and it can become so overwhelming and exhausting. Not only do you have the normal struggles of life, but you are faced with spending hours making and attending doctor and therapy appointments to get your children the help that they need, dealing with insurance companies, trying to assist your children with all of their daily living special needs, and trying to educate yourself and others about their disease. There remains little time or energy to take care of yourself and cultivate relationships and friendships that you really do care about and long to have, but they just get moved to the back burner because you are in survival mode thus leading to isolation. When Rachel got her feeding tube they ask me to complete a survey. Some of the questions on the survey had to do with isolation. I am beginning to understand more and more the reality of this struggle when you have special needs children. While other families move forward living the life cycle of a “normal” life, you are stuck in the first phase of the life cycle and it becomes very challenging to find time for other people or find others that you can relate to and have things in common with you. The children with special needs have this same struggle. So many people have been SO good to our family and have reached out to our family in great love and kindness on many occasions and for that I am so grateful. I was just venting and hoping to be the voice of reality for so many of my friends who struggle with this on an even a greater level and shed some light on the struggles that we face. Somehow we summon the strength to make it through the day and get up the next day and keep putting one foot in front of the other. 

Families Can Be Together Forever

 

His Grace Is Sufficient

 

Character

 

I Know He Lives