First Round of Chemo

After spending twelve hours in the ER last Sunday, Larry stayed the night in the hospital last Sunday and Monday, but they didn't end up dong anything for him other than keeping his pain under control. 

The GI doctor finally came in on Monday afternoon, acting very annoyed that he even had to be there. He essentially told Larry there was nothing that he could do for him and that there was no reason to bother because this disease was just going to take his life. This was very upsetting to Larry after he had been told by the doctor the previous day that they would do an ERCP on Monday and clean up any blockage that was happening. Larry really felt like the GI doctor just didn't have time for him and didn't want to bother. Larry told him to leave his room and he ended up filing a complaint against the doctor. Everyone at Portneuf was extremely helpful, except for the one that we really needed the help from. This reminded us of our week long stay at the University of Utah hospital and the one doctor that he really needed to see, the pancreatic specialist, never bothered to come and see him because they told us it was too far for them to walk to come and see him.😠

We decided to go ahead and move forward with the chemo on Tuesday morning because at this point we felt like it was our best shot at quickly getting the tumors shrunk and getting his whole body some relief. 

Just like we planned he went into the chemo fasting. He fasted (water only) 2 days before the chemo, did 3 days of chemo, and then fasted 24 hours after.

Sadly, he lost five pounds, but we feel like the fasting has protected his body from the harsh effects of chemo so it was worth it. The only side effects he has had so far have been extreme fatigue (could have been from fasting) and he had swollen feet for about twelve hours which we were able to eliminate by doing epsom salt and magnesium foot soaks.

He started eating (bone broth, green juices, and protein shakes) again on Friday and that is what he has done through most of the weekend. He has been able to gain his strength back little by little. Yesterday morning he felt really good and had a really good day. He was also able to attend our work Christmas party on Saturday night which we were all so grateful for.

Last night he tried to advance his diet and it put him in a lot of back pain😥His inability to eat normal continues to be our biggest challenge. We are hopeful that if we can get the cancer knocked back that it will significantly help with this.

Larry also had a brain MRI of his brain last Wednesday as the neuroendocrine cancer that he was diagnosed with can easily spread to the brain. We were very relieved that the imaging came back clear. He has a follow-up appointment with the oncologist tomorrow and we are very anxious to get his assessment of things.

The specific prayers that we could use at this time are that he will be able to start getting adequate nutrition and that the professionals we are working with will know how to best help us. We feel all of the prayers in our behalf and appreciate them so much.💖

Bekah's First Dance Compeition

I am so proud of Bekah and the WS drill team. They participated in their first dance competition yesterday and they performed very well. It was especially hard on Bekah last week having me in Mexico because she had extra long practices and really needed the morale support. She was a trooper though and performed well, despite her fears and physical limitations. One of her coaches shared the following story with me yesterday about Bekah. At the 4th of July parade over the summer the drill teamed danced in the parade. During the parade Bekah got very tired and fatigued. Angela ask her is she wanted to ride in the car, but she told her, "I don't quit!" and she kept dancing. Keep on dancing beautiful girl!!!

Bekah with her wonderful coaches, Angela and Jackie

Military Category Dance (they did not place in this category)

Dance Category Dance (they placed 3rd out of 4)

Hip Hop Dance Category (they place 3rd out of 5th)

Trip to ER

Today we spent from 8 am to about 8 pm in the emergency room at Portneuf hospital in Pocatello. At the end of the day Larry ended up being admitted to the hospital and I came home to with the children.

For about two months Larry's has gradually been having more and more pain in his digestive area, to the point where he has no desire to eat. At first we thought it was possibly tumors causing him pain, we also thought maybe he needed to change his diet, and most recently we thought maybe he had ulcers. We even went to to the ER a couple of weeks ago in Logan and they were not able to identify any foundational problems and just sent  him home with some medicine to coat his stomach. It was helpful occasionally, but did not address the foundational problem.

Last night when I got home from Bekah's dance competition Nate came and got me and ask me to check on Larry because he said that dad had been acting funny and was not well. I went and found him hunched over in pain, which happens often, but I guess he had been like that for most of the day and Nate knew that was not normal.😓 I ask Larry if he wanted me to take him to the ER, but he thought he could get through it by taking some pain meds. It gets really discouraging when you go to the ER time and time again and come home without any concrete answers.

This morning he got up to get ready for bishopric meeting. He is the 1st counselor in our ward and it was his turn to conduct the meeting today. He was especially determined to be there because the Bishop's brother had tragically passed away the day before and he really wanted to be there to support him. I could hear him getting ready to leave for his 6 am bishopric meeting and then leave the house. He came back in shortly after leaving asking if I knew where the key fob was for the car because when he went to start it, it wouldn't start and the light told him that the key was missing. He came in went through my purse with no luck and then ask me to go through my purse and I couldn't find it either. He went back out to the car and the key fob was sitting right where it was supposed to be and the car started right up.

He came into the house just beside himself, got very emotional and ask me to take him to the ER. He felt like the whole key fob situation was a sign from God that he wasn't supposed to go to his meeting and needed to go to the ER. As we were both feeling somewhat frustrated and discouraged we played uplifting gospel music on our way to the hospital to try and lift our spirits. It was also very windy on our drive and I had to drive about 20 mph under the speed limit so it took a little longer than normal to get there.

Thankfully, the staff were very welcoming when we got there and we were able to get right in. The first thing they did when we got there was get Larry hooked up to an iv and drew blood. They were also able to get his pain under control which was such a relief to both of us. The highlight of our day was being able to watch sacrament meeting shortly after we got there over zoom. Today was an exceptionally uplifting meeting and we gained much strength from listening to the testimonies that were born about Jesus Christ and his plan of happiness. 

He ended up having both a CT with dye and an MRI done. The blood work showed that his liver numbers were very elevated and his bilirubin numbers were starting to climb. Given the combination of the lab and scan findings they believe that he has blockage in his biliary stint that his causing him so much pain and trouble with digestion. He is scheduled for an ERCP tomorrow where they will go in with a scope and take a closer look at what is going on and hopefully be able to easily correct the problems. We are still hopeful and praying that he will still be able to start chemo on Tuesday. We are grateful to all of the wonderful nurses and doctors today who took such wonderful care of us and were extremely thorough in their evaluations.

Larry's Chemo Plan

After Larry had his port placed yesterday we met with the oncologist, Dr. Anderson. Larry's chemo will start on Tuesday. He will get 2 chemo drugs (carboplatin and etoposide) on Tuesday and it will take a couple of hours. Wednesday and Thursday he will only be given 1 drug (etoposide) and it will only take an hour. He then will have a break for 3-4 weeks (3 if his blood levels are back to normal). We will repeat this cycle for a total of 3 times. It is predicted that this will kill all of the cancer or significantly reduce it, but this type of cancer has an extremely high rate of coming back.😓He will also have an MRI of the brain done on Wednesday because this type of cancer goes into the brain very easily. In addition to praying for a clear MRI scan, we are hoping and praying that Larry's frequent abdominal pain will significantly lesson (or disappear would be fine with both of us), his ability to digest food will increase, and his diabetes will improve through these treatments.

Science of Fasting

A few years ago this documentary on fasting caught Larry's eye. It is a very fascinating documentary that scientifically explains the many benefits of fasting, including protecting healthy cells from damage while going through chemo (see end of documentary). Through Larry's many years of being sick, he would often not be able to eat for long periods of time and even fasted for a nine day period at one point.  He noticed that the fasting had a therapeutic affect on his body and possibly helped reset his body. After watching this video together we talked about using the benefit of fasting if we were ever faced with having to do chemo. Never thought we'd be in that position, but here we are and we are grateful to have this knowledge as we plan to start Larry's chemo treatments next week.

Follow-Up Trip to Hope4Cancer

We just returned from Hope4Cancer in Mexico at about 11:00 last night. It was a very quick trip, but very necessary and worthwhile. The positive energy there from both staff and patients is amazing and very refreshing. It is also such an amazing feeling walking away from a clinic having complete confidence in their assessment and recommendations.

We got into San Diego Sunday evening where we stayed the night. As we were driving to our hotel the driver made the comment that because the fog was coming in they might redirect flights to another city because the fog can be very dangerous to the pilot's ability to land. We felt very grateful to have had a smooth trip and to have gotten there before the fog set in.

Since Larry has been so sick traveling has been very hard on him. Luckily we had remembered to bring some magnesium flakes and essential oils so that he could have nice therapeutic bath before having some soup and retiring for some much needed sleep. We went to bed early and both slept soundly for about 10 hours that night.

As they do blood tests and ultrasounds first thing in the morning at Hope4Cancer the driver picked us up to go into Mexico at 6 a.m. After having his assessments done we were able to have a nice breakfast at the clinic and spent the rest of the day doing all of Larry's therapies that we would normally do at home.

Tuesday afternoon we were finally able to meet with the doctor. We felt very encouraged that the tumors had not spread all over his body as had been predicted it would do. There is a very small spot on his lung that looks suspicious so we are going to start focusing our therapies on his lung as well. The tumors did look bigger, but the doctor suspects they are just inflamed due to the therapies that we are doing. The most exciting news that we received is that Larry's cancer markers had went from 750 down to 350!!! We were elated to receive this news. We felt like all of the hard work that we had done over the past three months is paying off.

Going forward we are going to continue on the therapies that we have been doing and we are going to add a laser therapy. We will continue on the immunotherapy, elixor shots, and some of the supplements we have been taking (we have had to really scale them back as Larry can only handle so much going into his digestive system everyday). The doctor also encouraged us to go home and start the chemotherapy that we were tentatively planning to do. He said with how aggressive this cancer is we need to hit it from all of the angles. He did give us some tips for how to detox three days following the chemo. We also did our thermography before leaving the clinic on Tuesday. By the time we got home it was dark and cold so we just settled in for the night and watched a movie. Sadly, we were in a very nice hotel with these beautiful swimming pools that we never even got to go in😓We stayed at a beautiful hotel that Hope4Cancer had recommended to us and it was cheaper than the Best Western we had stayed at in San Diego. Just wishing we had more time to enjoy it.

Wednesday morning was super rushed as we had to leave Mexico for the airport by noon. We had to meet with the nutritionist and functional doctor and pick up all of our supplements before leaving. I just can't even put into words how much I LOVE the nutritionist, Oscar, at the clinic. He knows so much about the digestion process and how everything effects the whole process right down to a tiny drop of saliva. He is also extremely knowledgeable about compositions of foods and about every supplement out there. He has played a huge part in helping Larry be able to eat orally and knowing things he can take for different symptoms he is having. He has given us a target amount of calories (he said with chemo he needs to have about 500 more calories a day) that he needs to be eating everyday and he has provided us with a diet plan of how to get those calories with the type of foods Larry is able to eat. Larry pulled out his NJ tube before we left for Mexico as it was just irritating him too much and the plan was to come home and have a gastro tube put in. Oscar encouraged Larry to try getting adequate calories for a two week period with the new diet plan and then look at the tube if he isn't able to get enough calories orally. We finished all of our appointments just in the nick of time to leave for the airport.

Even though our flight didn't leave until 5:15 we had to leave at noon. Last time we crossed the border we got right in to the U.S. and sat at the airport for about four hours, but not this time. There were several lines and the traffic was backed up for miles and we waited in line for about 1 1/2 hours. It was a crazy mess and not something I would choose to go through again. Once was plenty. There were cars bumper to bumper, tons of pushy vendors trying to sell things, beggars, and people being rude to each other out of shear frustration. Our driver does this drive at least once a day and has waited in line up to seven hours (ugh!). Poor Larry wasn't feeling very well after breakfast and spent most of the time hunched over in pain. It was a very long ride to the airport and flight home. When we got home he took pain meds and a hot bath.

This morning we had to leave for Pocatello at 10:30 to have Larry's port placed at Portneuf hospital. The placement went smoothly and he is feeling much better. We are now waiting to meet with the oncologist at 4:00 to see what our plan of action will be for his chemo treatments.

A couple of friends that we met at Hope4Cancer. The girl I am standing next to is a nurse who has been diagnosed with cancer that she has kept at bay naturally for several years. As it has come back, she has decided to come to Hope4Cancer to get more aggressive with her cancer. While there we also met a lady that was diagnosed with stage IV pancreatic cancer and had been given three months to live. She has been doing alternative therapies and treatments and is going on a year and a half. She has come to Hope4Cancer to get more advanced therapies.

Above are pictures of the outside of the beautiful hotel we stayed at. Oh how I wanted to get in those pools, but by the time we got home every night it was too cold and we were exhausted. 

Above are pictures of our crazy experience at the border. It made me especially grateful to live in small town Idaho.

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!

Westside Champions!!!

Congratulations to the Westside football team for becoming three-peat state football champions last night! First time ever in Idaho 2A history. During half-time Bekah had the opportunity to perform with the Pirettes. I am so proud of this sweet, determined girl. As she has ataxia this road has not been easy for her, but she is persistent and those around her keep lovingly lifting her up. This is the first year that they will be competing in dance competitions. Last week Bekah came home crying and very upset. She said, "Mom, we have to be perfect for competition and I can't be perfect!" After giving her a hug and having a discussion about it we decided that I would contact her coach and talk to her about Bekah continuing on with the dance team and still performing at local performances, but sitting out for the competitions so that she did not hold the team back for the competitions. Her coach agreed that she would talk with Bekah about it at practice that night. When Bekah got home I ask her how it had went. She said that her coach had said that she wants Bekah to dance at the competitions because she is part of the team and it actually helps the team in the competitions. I can't even tell you how deeply this response has touched my heart. True winners in my book and another great win for Westside!

My beautiful Pirette with a smile that lights the world!

Bekah and her friend, Katelyn (the girl that moved here from Utah and talked Bekah into joining the dance team with her a few years back) are captains for the dance team. They wanted to do something special for the girls for state and they came up with these cute picture frames. Thanks to some amazingly kind and generous people, we were able to pull these off last minute.

The Pirate flags are such a fun tradition for the team!!!

Update from the Ward Home

I just realized that it has been about a month since my last update. This season of our lives just feels like one big whirlwind, but we continue to feel immense gratitude for the many blessings that God has given us.

It has now been 2 1/2 months since we both returned home from Hope4Cancer. Despite the huge learning curve that we have both had, we have fallen into some pretty good routines and we believe that the treatments we are doing, and the way of life we have adopted, are making a huge difference in Larry's quality of life. Ultimately we hope that they will make a difference in his quantity of life as well. We will learn more when we go back for his three month assessment on November 29th. We are hoping to find some clarity at this appointment as there is still so much confusion as to where we are really at in this battle. We know that that the treatments are making a difference, but where we stand in reducing the cancer remains clearly unknown.

The PET Scan that we had a few weeks ago shows that the tumors have grown. There was no evidence or report that the cancer had spread, just that the tumors were bigger. It is our understanding that when cancer cells die they cause inflammation. Could this be the reason for the enlargement in the tumors? There are so many unanswered questions.

As part of our weekly routine we go to Dr. Jason West in Pocatello for IV therapy. We went to Dr. West immediately after Larry's diagnosis. One of the things that he did at his initial appointment was to take Larry's blood and magnify it under a microscope. Larry's cells had an abnormal shape and were sticking together which was indicative of cancer. His most recent blood work his cells looked round and evenly distributed. This was very encouraging to us, but we are still uncertain what to make of the enlargement of the tumors.

We have looked into becoming part of research studies for Stage IV pancreatic cancer and we did meet with The Huntsman Cancer Institute last week to get a second opinion on options that we had available. We were once again told that Mexico has done us no good (which we strongly disagree with--maybe it has not been a cure yet, but Larry is doing amazingly well considering the originally prognosis he was given (as one of our good friends put it, he is past his expiration date😉). As we were filling out the symptoms questionairre before our appointment I felt great gratitude in my heart for all of the many, many things that Larry is still able to do. He does not have the stamina to be at work all day or do the things he would normally physically do around the yard, he has pain in his stomach that comes and goes, he has digestion issues, and he is not producing insulin like he should, but other than that he gets himself dressed, he is able to do most of his protocols by himself, he drives, he still goes on daily walks, he still actively serves as the 1st counselor to the Bishop in our Ward, he participates in most family activities, he recently spoke at Ben's Eagle Court of Honor, and he is a wealth of information for so many things for our business and to our family.

Honestly, we have our occasional days when we wonder if it is all worth it, but it is usually after we have rubbed shoulders with someone in traditional medicine. When we first started on this journey of healing against all odds we were told that 90% of the battle is mental and we have found this to largely be true. I believe strongly that you can only achieve what you believe. As we are told in the scriptures faith proceeds the miracle. If we don't believe something can happen then we don't even have a shot.

I remember going to IEP meetings at the school when the twins were just starting in elementary school. I remember them asking me if we should even bother teaching them to write as they would probably just lose that ability as time went on. I told them ABSOLUTELY that they needed to learn to write! They have learned to write and are still writing at 18 years old. In fact, they have handwritten some of the most beautiful and touching notes through the years. What a shame it would have been to limit them because of something that might happen. I believe so strongly in the power of the mind. We are both anxiously awaiting more conclusive testing and reports as to the progress we have made towards healing with Larry's disease. I will just pray to have patience until we know more.

Ben's Eagle Award

I am so proud of Ben. He is such a kind, caring, determined, and intelligent young man. On Saturday, November 6, 2021 he was awarded his Eagle (just in the nick of time) at an outdoor ceremony at our local Oxford park.

Ben started attending scouts when we lived in Malad (a town about 30 minutes away from where we now live). Malad has some incredible scout leaders who really care about the boys. When our church separated themselves from the scouting program, these leaders formed a community troop (troop 1776) and continued on with their great work of teaching boys valuable skills and essential values to be successful in life. Since our move to Oxford (over six years ago) they have been persistent in keeping our boys involved with their scouting troop. As a result Enoch was able to receive his Eagle a few years back and now Ben has received that same award.

When Ben first started thinking about Eagle project ideas he really wanted to build a play set for the park. As he started to research what it would take to complete such a project he realized that he would not have time to complete it by his 18th birthday. His thoughts then turned to building a bench to donate to the park. He then had the amazing idea to dedicate it to the oldest living man in our community, Dee Boyce, who has served our country (US Navy at the end of WWII) and community in countless ways, including serving as our local historian for years. The oldest homestead in Oxford, that was his great-grandfather's that was settled in 1864. The home still exists and is located on Dee's property. He has made that home into a little museum by gathering a variety of historical documents and artifacts through the years and he openly welcomes anyone to visit and become more acquainted with the history of the Oxford area. When Ben dedicated the Bench to Dee at the ceremony Dee in return presented Ben with a lovely book on the history of Oxford with colored pictures and all.

As part of the ceremony Ben's father, Larry, gave an inspirational talk. In his talk he shared the following poem entitled "Good Timber" by Douglas Malloch. This was such a powerful message coming from Larry given that he is currently battling stage IV pancreatic cancer and Ben has battled the disease of ataxia-telangiectasia (A-T) since he was born.

The tree that never had to fight

For sun and sky and air and light,

But stood out in the open plain
     And always got its share of rain,
Never became a forest king
     But lived and died a scrubby thing.

The man who never had to toil
     To gain and farm his patch of soil,
Who never had to win his share
     Of sun and sky and light and air,
Never became a manly man
     But lived and died as he began.

Good timber does not grow with ease,
     The stronger wind, the stronger trees,
The further sky, the greater length,
     The more the storm, the more the strength.
By sun and cold, by rain and snow,
     In trees and men good timbers grow.

Where thickest lies the forest growth
     We find the patriarchs of both.
And they hold counsel with the stars
     Whose broken branches show the scars
Of many winds and much of strife.
     This is the common law of life.

The bench turned out beautifully and the weather was decent as well. Ben presented the parent pins, two mentor pins, and a grandparent pin as part of the ceremony. Brian Hennessy, a local neighbor who opened up his shop and mentored Ben through the whole building process, received one of the mentor pins. The other pin was given to Ben's scout leader, Tony McClain, who has been the persistent rock behind making this all happen. A grandparent pin was presented to his grandmother, Trudy Ward. Trudy has served as a merit badge counselor for years and was very instrumental in helping Ben complete some of his badges.

The event was well attended. We had people from as far away as Maryland (Dee's daughter) come for the event, his Aunt Janice drove eight hours from NV to be here, and a group of family drove three hours from Utah County to join us. He also had two of his scout age cousins, Porter and Collin, do the presentation of the US flag. We appreciate everyone's love and support so much and would like to offer special thanks to Ben's financial and material donors:

• Brian and Tara Hennessy (Hennessy Construction)
• Steve and Laurie Fisher
• ValDean Fisher (in memory of Doug Fisher)
• Brent Fisher (Fisher Painting)
• Kirk and Nelladee Waldron
• Levi and Jenessa Waldron
• Sally Jones
• Kyle Chatterton (Incredible Concrete)

At the end of the ceremony we enjoyed delicious cinnamon rolls and muffins that were so kindly donated by Rae's Bake Shop & Cafe located on State Street in Preston.

Ben's Dedication Speech

Dee Presenting Oxford Book to Ben

Larry's Talk