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.