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