Anyone that imagines that bliss is normal is going to waste a lot of time running around shouting that he's been robbed. Life is like an old time rail journey...delays, sidetracks, smoke, dust, cinders, and jolts, interspersed only occasionally by beautiful vistas and thrilling bursts of speed. The trick is to thank the Lord for letting you have the ride.--Gordon B. Hinckley
Sunday, September 26, 2021
We Are Finally Home!!!
Sunday, August 8, 2021
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!
Thursday, March 18, 2021
Letter to Dr. Whitcomb
Following is an e-mail that I sent to Dr. David C Whitcomb, Professor of Medicine, Cell Biology & Molecular Physiology, and Human Genetics at University of Pittsburg. His professional career has focused on understanding the origin and nature of pancreatic diseases for the purpose of providing effective preventative and therapeutic interventions. I am hoping for a prompt response.
Dear Dr. Whitcomb,
Wednesday, March 10, 2021
Spencer keeps having pancreatitis symptoms (pain in the stomach radiating to the back, not eating or drinking, problems breathing and just feeling plain miserable) and I finally convinced him to go the the ER last night. Frustratingly, all of his blood work came back normal including his enzyme levels, which were actually on the low side. His blood work did, however, indicate that he was dehydrated so they gave him some fluids. Sadly, this ER visit only added to the narrative that the medical community will never be able to help him and he made the comment that this is exactly why he avoids going to the doctor.
The doctor was strongly suspecting kidney stones, but when there was no blood in his urine she opted not to. As I have started putting all of the puzzle pieces together and watch Larry & Spencer suffer in very similar ways, I highly suspect that he has had chronic pancreatitis for at least a few years. My suspicion would be that it started the second year of his mission when he got really sick and started having a variety of health problems, including losing weight, stomach pains, and lack of energy.
After posing my suspicion about Spencer possibly still having pancreatitis even though his enzyme levels were not elevated to the pancreatic group I learned a lot. I learned that many fellow pancreatic sufferers had had experience with having pancreatitis without the enzyme levels being elevated. It's possible that if they would have went ahead and did the CT scan that they may have been able to identify some inflammation, but the endoscopy with ultrasound is the most reliable. I learned that there can be scarring and calcification going on without the intense pain. It was also suggested that I look up MALS. Median arcuate ligament syndrome (MALS) is a rare entity characterized by extrinsic compression of the celiac artery and symptoms of postprandial epigastric pain, nausea, vomiting, and weight loss mimicking mesenteric ischemia.
- Pain in the upper middle stomach area, which may go away when leaning forward.
- Stomach pain after eating, exercising or shifting body position.
- Fear of eating food due to pain, leading to significant weight loss — usually greater than 20 pounds (9.1 kilograms)
- Bloating.
Tuesday, August 12, 2014
Spencer's Yearly Diabetic Check-Up
Thursday, March 27, 2014
Our Toxic Mold Experience
Following is a timeline of events that we have been through and continue to go through in relation to our exposure to toxic mold. We have experienced and learned a lot and we have a lot of work ahead of us to regain our families health. The best advice I have been given through all of this is to FOCUS ON HEALING! I have to remind myself of this daily.
Larry tested positive for tricothecenes, the most toxic mycotoxin there is. Tricothecenes are produced by common species of mold such as aspergillus, penicillium or stachybotrys (black mold) and they can be inhaled or ingested. Our rental home had tested positive for aspergillus and pencillium.
December 28, 2013
Our 4 month break from pancreatitis is short lived and Larry returns to the hospital from another attack after a family Christmas party. He is lying there in the ER in horrific pain and I keep asking the nurse when the doctor is going to be there. He replies that the doctor legally has 30 min. to respond to an ER call. I am thinking where can you go in little old Malad that you couldn't be there in 10 min. or under. The doctor comes walking in 30 min. later and says, "Are you going to listen to me this time? Have you had enough?" At that moment I realized that this was the doctor that had been emotionally abusive to him at our August visit. Larry sat up and said, "Listen lady are you going to help me or am I going to walk out of here?" As calm as I could speak from being so appalled I said, "this is not the time or place for that, please get his pain under control and we will talk about this out in the hall."
The pressures we felt to get his gall bladder out were relentless--work, church, friends and medical workers, but I KNEW that his gall bladder was not the cause of his pancreatitis and still NOONE would look at my folder full of documentation!!!
We were essentially held hostage at the hospital for a week waiting for Larry to be well enough to have his gall bladder taken out. I ask him several times if he wanted to just walk and not have the operation, but he felt SO much pressure that he felt it was something that he had to do. They say that his gall bladder had sludge in it and were certain that they had taken care of the problem. We were both somewhat optimistic that maybe, just maybe this would fix the problem.
March 2, 2014
The day after returning home from our son's state wrestling tournament Larry has another attack and spends another 4 or 5 days in the hospital. After being released, he goes back into the hospital gain because his pain flares up again. We are both VERY DISCOURAGED!
While he is in the hospital, my sister-in-law comes over and we clean out all processed food out of our refrigerator. With each hospital stay I have cleaned up our eating more and more, but it has been a VERY difficult process with a newborn baby and still trying to get settled from our moved.
March 26, 2014
After much experience, research, testing and talking to experts I have come to the following conclusions:
1. We were poisoned by toxic mold.
2. We very likely have a cross-contamination issue that continues to affect us at some level. One of the doctors I spoke with was adamant that we needed to get rid of all of our things, but this seems like such a drastic step to take when there are still so many unanswered questions (what is the ERMI level in our home now) and we are struggling so much financially.
I really liked Dr. Mary Short-Ray's advice to hepa vacuum and wipe down all of our belongings with a mold killing solution, especially the wood, and then buy air filters (available on toxic-mold-syndrome.com website) that should help take most of the mycotoxins out of the air.
3. Larry, and possibly several of us, suffer from "Mold Illness". Many patients “don’t look that bad.” But those people are struggling with an illness that causes them to lose their quality of life. These patients don’t know that they have a genetic susceptibility to develop this illness based on their immune response genes (HLA–DR). They don’t know that the inflammation that makes them ill comes from within: it is due to an assault by their own unregulated innate immune system responses. Because of exposure to the interior environment of a water-damaged building, these patients will have a series of abnormalities in innate immune responses that will not self heal; will not abate in severity [actually increase!] and will continue to cause illness from blood- and tissue- based inflammation as well as alteration of the regulation of fundamental genomic activity. At the core of why one person becomes ill from this exposure and another doesn’t is their gene susceptibility (or predisposition) – what is built into their DNA. Every person’s innate immune system is personal and genetically coded – thus, it works differently for each of us. When the body is faced with a foreign substance, it immediately begins to process that substance – recognize it, determine if it is good or bad, a friend or a foe, and throw it into the antigen presenting machinery that will normally generate an effective antibody response. If the body determines the substance is a foe, it will develop antibodies to bind these substances, called antigens. Normally the next time a non-mold susceptible person walks into a WDB, his antibodies will target the antigen and clear it out fast. That protection from so-called acquired immune responses just doesn’t happen in mold patients.
The genetics are clear: occurrence of specific HLA types are found in about 25% of the population. It is in these people that we find the sickened ones almost always (nothing is 100% in biology). In these people, the antigens stay in the body, and our own defenses bombard our body in response to those antigens. What you now have is a person who is defenseless against new exposures and is suffering daily from inflammation.
It is a vicious cycle – the foreign antigens (substances) stay in the body, causing the immune system to constantly fight back. This causes so much inflammation in the body that it leads to chronic illness, and the occurrence of many symptoms. Our entire being suffers from friendly fire from our own innate immune system."--Dr. Shoemaker
4. The most critical thing that we need to start doing immediately is to get on binders (see toxic-mold-syndrome.com). These pull the toxins out of your body and from what I've been told things may get worse before they get better. I've been told that the average healing time is 8 mos. to a year.
5. We have got to practice clean eating continually and specifically nourish the pancreas and digestive tract. to avoid future pancreatic attacks. The most helpful cookbook I have found to cook from is called "Nourishing Traditions" by Sally Fallon. I HIGHLY recommend this book. At some point we may go on the "mold killing diet".
6. We are not going to get the help for toxic mold exposure that we need from the mainstream medical community. We will have to go to an environmental MD that specializes in mold poisoning. There are only a handful of them in the United States and they are very hard to get into. Larry has an appointment with Dr. Janette Hope MD and mold survivor in Santa Barbara CA at the end of April.
Ideally we would all be able to visit Dr. Hope, but with our shortage of finances Larry has to be the priority.
Some of us continue to have sinus issues, vision problems, and brain fog.
7. Our whole family needs to be taking the herbal supplement, protandim (see abcliveit.com for more info.). Protandim has been clinically proven to reduce oxidative stress by an average of 40% after only 30 days. Oxidative stress is a huge component of damage done by toxic molds (see scientific article by Dr. Janette Hope at http://www.hindawi.com/journals/tswj/2013/767482). Some of the members of our family that fared the best through our mold exposure were religiously on protandim because of other medical conditions that they had. I regret not having them on it sooner.
8. This experience may cost us our livelihood. We own the local feed store and grainery and my husband is constantly working in grain dust that is full of mycotoxins. For now he will wear a mask.
Tests We Have Had Done
1. ERMI (emsl.com) about $300 This is the test we did at our rental house to confirm the presence of toxic molds.
ERMI is the Environmental Relative Moldiness Index – the combination of EPA research, powerful PCR technology, and a new method to screen homes for mold.
The ERMI test involves the analysis of a single sample of dust from a home. The sample is analyzed using mold-specific quantitative polymerase chain reaction (MSQPCR), a highly specific DNA-based method for quantifying mold species. A simple algorithm is used to calculate a ratio of water damage-related species to common indoor molds and the resulting score is called the Environmental Relative Moldiness Index or ERMI.
2. ehaplabs.com this lab tests for symptoms of mold exposure and mold sickness in the human body. The mycotoxin test that we had done was about $700. You can submit this testing to insurance as long as you have them include the appropriate codes.
If your doctor is willing they can sign up with Real Time Labs and order the tests for you through the doctors office. If they do this and you do a repeat tests it is only $200 instead of $700. The lab has a structure in place to train open minded doctors to treat this condition.
3. Visual Contrast Sensitivity (VCS)--available to take at survivingmold.com
Pricing:
1 Test: $15
4 Tests: $40
10 Tests: $75
50 Tests: $250
The VCS APTitude is designed to help identify contrast vision loss from exposure to a variety of environmental sources of illnesses.
I was very skeptical about this test until some of our family had taken it and I have received the thumbs up from the doctors that I have visited with. I really expected most of our family to fail it, except for Dallin, who never seemed to have any toxic mold illness. So far our results are as follows:
2. Jill--failed both
3. Enoch--failed both
4. Dallin--passed both!
This test is designed so that as you start to heal and get the toxins out of your body, your vision will improve! This gives us a fairly inexpensive way to track progress for our whole family.
If you have an unexplained illness, you should consider toxic mold poisoning! To learn more go to the references below:
Other Recommended Links, Websites, & Books
1. www.toxic-black-mold-syndrome.com This is Dr. Mary Beth Short Ray M.S., D.O.'s website. She is the author of "Surviving Toxic Black Mold Syndrome" which I highly recommend. This book was specifically written for doctors. She is a doctor who has been through toxic mold poisoning.
Dr. Mary Ray also does phone consultations for $50 per half hour. I have had a couple of them with her and found them to be well worth the money. Most environmental drs. charge anywhere from $250--$500/hr.
2. momsaware.org This is Andre Fabre's website. This is the website that I originally came to when I started learning about toxic mold. They had 9 children and left everything behind because they were so sick and had been exposed to toxic black mold for several years. She has been a good friend through this whole experience. I would encourage you to read their story and spend time looking at her website. She has some EXCELLENT info. on there.
3. Following is a link to a medical journal article written by Dr. Janette Hope, President of the American Academy of Environmental Medicine. This is an excellent well documented article that is at least worth skimming through. http://www.hindawi.com/journals/tswj/2013/767482/
4. sponauglewellness.com
This is a detox center in Clearwater, Florida that was recommended to me by Dr. Baker, from Pocatello, who also went through toxic mold poisoning. There are some very interesting testimonials on this website, but they don't show any pricing which makes me a little nervous.
5. ehcd.com
This is the Environmental Health Center in Dallis, TX where Dr. Baker also suggested that we go after going to Dr. Sponagle in Florida. Dr. Mary Ray also recommended that we go here and visit Dr. William Rea. There protocol looks very promising. Again, just wondering how much they charge???
6. survivingmold.com. This is Dr. Richie Shoemaker's website. He is one of the leading doctors in treating toxic mold illness. This website contains a wealth of information.
7. Jack D. Thrasher, PhD (thrasher.org) is an immunotoxicologist who has assisted hundreds of individuals injured by toxic chemicals and molds. Dr. Thrasher has been a consultant and expert witness for cases involving environmental toxicology and immunotoxicology. He has been very helpful to us in putting togetther all of the puzzle pieces.
8. Mold: The War Within by Kurt & Lee Ann Billings--Lessons Learned from Katrina
This is just the tip of the iceberg of everything that I have learned over the past 10 months. I would love to hear your experiences and feedback after reading this. In the meantime, I am going to keep putting one foot in front of the other and FOCUS ON HEALING!









