Showing posts with label Spencer's Story. Show all posts
Showing posts with label Spencer's Story. Show all posts

Sunday, September 26, 2021

We Are Finally Home!!!

Life has been such a whirlwind since my last post. I flew home Saturday, September 4th and Spencer flew in to spend the last few days at Hope4Cancer with Larry. Spencer and Larry arrived home on Friday, September 10th. We didn't plan it this way, but Spencer and I just happened to be landing and leaving at the same terminal and we were able to stop for a quick hug and picture. So grateful for God's tender mercies.

Leaving Hope4Cancer was bitter/sweet. Not only did we form some incredible friendships while there, but it was really hard to leave the structure of the center. I came home early to replicate the structure at home the best that I could and I am still working to get things organized and put away. Since Larry has been home we have continued doing the sono machine, red light therapy, the sauna dome (aka pizza oven), enemas, immune boosting and mistletoe shots, daily juicing, a variety of supplements, a specialty diet, and we are doing vitamin c therapy and hyperbaric one time a week in Pocatello. The lifestyle changes have not been easy, but they are making a difference in regards to killing the cancer. Before we left Hope4Cancer the ultrasound showed that the cancer had not shrunk at all, but it was still contained in the pancreas and the few spots on the liver. We were told that we would see the cancer shrinkage at our three month check-up. Larry's blood work at the West Clinic in Pocatello also showed that the cancerous cells that were circulating in his bloodstream prior to the treatments at Hope4Cancer had returned to normal. When we got to Hope4Cancer Larry was too weak to carry our suitcases into the clinic. Larry had a goal to gain his strength back while at Hope4Cancer and take a run down the beach before he left. Through hard work and dedication he was able to accomplish this goal!

Last Sunday evening we were finally able to visit with a lady by the name of Rivi who had been diagnosed with Stage 4 pancreatic cancer seven years ago, had went to Hope4Cancer, is cancer free, and doing great. Her story was party of what inspired us to go to Hope4Cancer. Her big advice to us was to remain vigilant in doing our treatments from the center. Larry has been very diligent in following his plan. She also highly suggested that we eliminate all of the chemical products in our home, including cleaning supplies and products for the body, to get EMF protection, eat only fish from the Atlantic, not from the Pacific, get infusions of 150,000 mg a week of vitamin C, and she reminded us to daily practice emotional therapy by forgiving others and looking at yourself in the mirror everyday and telling yourself that you forgive and love yourself. Talking to Rivi on the phone was very motivating to both Larry & I and gave us hope that we were on the right track to obtain the healing that we both desire.

We were headed in such a promising direction up until last weekend when Larry started having additional health problems, that we have since learned were blood sugar issues. He is now taking insulin with every meal to try and keep himself regulated. I am so grateful that our Type 1 diabetic son, Spencer, is so knowledgeable about regulating blood sugars. His past eight years of experience with it has been an invaluable blessing to Larry at this time. Through much hard work, study, and experimenting Spencer has learned to keep his blood sugars very tightly controlled and he is able to give us expert advice in helping to keep Larry's blood sugars controlled. Despite this incredible setback, I am so amazed at Larry's continual optimism and determination. 

Larry gained two pounds while at Hope4Cancer, but since he has been home, he has started to lose weight.😭This is in part because it has been a challenge for me to learn all new ways of shopping for and preparing foods and partly because his pancreas is very angry and keeps giving him trouble with blood sugar regulation, enzyme production, and pancreatitis. In so many ways I feel like we are back to square one and this has been a very hard blow to both of us emotionally. Tomorrow Larry is scheduled to have an NJ tube (the tube that is placed through your nose and into your small intestine) placed at Logan Regional. After having his last one placed he swore that he would never have one placed again because it is so incredibly uncomfortable, but here we are. God sure knows how to keep a man humble.

Our Bishop gave Larry a Priesthood blessing tonight in preparation for the placement tomorrow. If Larry responds well to the tube then he will have a gastrostomy (surgery to install the feeding tube in his stomach) probably in about a week. I have been extremely emotional through this process as it has been so heartbreaking to watch Larry go from a stocky, muscular man to just a skeleton of what he once was in just a short amount of time. He has lost over 50 pounds in the past year and is now at about 120 pounds. I recognize that this tube placement tomorrow may be the last shot he has at being able to put some weight back on and start building his health back. I pray several times a day that we will continue to see miracles and that Larry's body may continue to heal and have the opportunity to finish raising his children. I know that ultimately that God is in charge and I find peace in knowing that we have done all that we can do.


Spencer & I at the airport


Larry in his bed at the treatment center. Some of the Primary kids from our ward made these hearts for him before we left and they made great decorations for our room!




Some of the incredible staff at Hope4Cancer


Our last walk on the beach together before I left for home


Larry with our good friend, Andy, from Texas


We were able to contact the missionaries while we were there and they came over and gave Larry & I blessings. Two other couples at the center also received priesthood blessings from the missionaries and we had a short lesson on prayer. As we were packing and getting ready to leave for our trip Larry ask me if had any Book of Mormon's that we could give away. I was so hyperfocused on packing for the trip and getting Larry to get to the center for his treatments that this was the furthest thought from my mind. One of our favorite things about Hope4Cancer was the good spirit that was there and the daily discussions that we would have about God and religion. We ended up giving out ten Book of Mormon's while we were there.

More of the yummy food at Hope4Cancer


Our good friends Richard & Debbie from San Diego and Tina & Tom from Wisconsin




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!





On Sunday our lesson during relief society was on miracles. As we are continue to hope and pray for a miracle that Larry will be healed and be granted more time to be with us, this lesson hit very close to home to me. Our situation was mentioned several times throughout the lesson and the support and love I felt from the sisters in the room really helped to buoy me up. 

Today Larry started his IV therapy with Dr. West. On the way there he was so tired and non talkative. I was so happy to see him perked up and so alive after his treatment. I knew Larry was feeling better when he wanted me to stop and help somebody along side the road who had broken down. EverAfter visiting with Dr. West I have a lot of hope that these treatments may be able to both increase his quality and quantity of life. Tomorrow Larry starts with the hypobarrics.



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,

I just finished listening to your presentation on the mission cure website about genetics and pancreatitis. It was an excellent presentation and very insightful. I cannot thank you enough for your dedication to this field and your enthusiasm for changing the history of this horrible disease process.

My husband, Larry started having recurring acute pancreatitis in 2013 at age 47. To date he has had 34 hospital stays and 49 documented attacks (does not account for all of the mini attacks). After about a year and a half of being what we thought was attack free, he started having what we thought were GI problems last September, which eventually resulted in a complete inability to eat or drink and a 40 lb. weight loss.

When he first started having the symptoms last September he went in for a colonoscopy and everything checked out to be ok. I had to convince him to go to the ER a few months later when he was still struggling and his enzymes were a little bit elevated and they indicated that on the CT scan his pancreas looked a little inflammed, but nothing alarming. FINALLY at the beginning of January we ended up in the ER again when he couldn't keep anything down, had lost so much weight, and was throwing up and in constant pain. At this visit the ER doctors were very alarmed at his pancreas on the CT scans and said that it looked like it had been run over by a freight train. Other doctors that have reviewed these scans have described the image of his pancreas as looking like somebody had ripped it out, thrown it on the sidewalk, and beat it over and over again with a baseball bat.Emoji

For the first time since this whole process had started, Larry was put on an NJ tube and a couple of weeks later he had a stent placed in his pancreas because his pancreatic duct had completely dissolved. He has also currently on blood thinners, and spent a good month on 24 hr. high doses of antibiotics through a pic line due to his high risk for infections. The stent was placed on January 21st and since that time he has still only been able to eat very soft foods, such as pudding or soup, and he is not even able to eat all of those all of the time. Thankfully, even though he has learned to absolutely hate the NJ tube, he is usually able to tolerate the feedings.

On March 9th Larry had a repeat of the CT scan and met with Dr. Braden his gastroenterologist. Dr. Braden said the pancreas is healing, but it seems to be much slower than he would like. Last week we were also FINALLY able to meet with a genetic counselor and Larry's genetic testing was sent to the lab last Monday, March 13th which we are all anxiously awaiting the results for, especially because his paternal grandmother died an incredibly painful death of pancreatic cancer at the young age of 49. It is my understanding that she started having stomach pains at the age of 48 in March and she essentially starved to death for 1 1/2 years and passed away in December of the following year at 65 pounds.

All facts would indicate that Larry's pancreatitis started because of a toxic mold exposure that our family had. In 2012 we moved to a new house in November and by February of 2013 our family started having some very severe health problems--pancreatitis, Bell's palsy, asthma, chronic coughs, and my 13 year old son, Spencer, was diagnosed with Type 1 diabetes. All of these symptoms came on in a very short amount of time and once we left the environment we stopped having the intense health problems minus the pancreatic damage that had been done in my husband and son. We ended up going to Dr. Hope, MD in Santa Barbara, CA who specializes in environmental toxicity. ALL of our urine was positive for tricothecenes (some of the most deadly mycotoxins in existence) which I suspect was the culprit behind all of our problems.

In regards to my son, Spencer, he has mostly done an amazing job at managing his Type 1 diabetes. I know few people who are as disciplined at healthy eating and determined to have optimal health. Having Type 1 and his frustration with the lack of good information (specifically nutrition) has motivated him to become a doctor and he is currently in his 2nd year of his Undergraduate studies in Nutritional Science at BYU. My heart is absolutely broken, however, as I continue to watch him battle for good health on a daily basis despite his incredibly good health habits and lifestyle.

In the Summer of 2017 he served an LDS mission in Washington state. The first year his health was relatively good, but the second year of his mission something changed and he started having health problems that included headaches, stomach pains, malaborption, brain fog, and weight loss. They tried to diagnose him with depression, but we were both convinced it was more than that. Amazingly, he muddled through his mission and crawled to the finish line. During this time period he tried several supplements, was treated for hp palori, and adopted a gluten-free lifestyle. Looking back I suspect that he had possibly started having pancreatitis.

A few weeks ago I finally convinced him to go to the ER and get checked out when he had been unable to eat and drink for a few days and was having stomach pains. Because his enzyme levels came back normal they treated him for dehydration and sent him home. Unfortunately, this experience just solidified in Spencer's mind that the doctors are not going to be able to help him.

As Larry and I are the parents of seven amazing children (ages 7-23), three of whom have also been diagnosed with a rare genetic disease, ataxia-telangiectasia (A-T), we need our husband and father! I am writing you out of sheer desperation that you might be able to offer me some insights and direction as to where to go from here. 

As a caretaker of all of these people, I am exhausted, tired, and I could really use some expert advice. I have spent countless hours and sleepless nights doing research, contacting experts in various fields, trying to keep the bills paid, making and going to doctors appointments, and negotiating with insurance companies. Any insight or direction that you could give to me would be so greatly appreciated. Thank you for your time.

Sincerely,
Jill Ward

P.S. One other thought in regards to three of my children have A-T. This disease is caused by two recessive ATM genes. As Larry is one of the parents it is pretty much a given that he carries the ATM gene. The ATM gene is know for high rates of pancreatic and breast cancer in people that carry it. Is it possible that his pancreatitis could have been triggered because of this gene?


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.

Signs and symptoms of MALS include:
  • 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.

I am anxiously waiting to get Larry's genetic testing back (about 4 weeks) so that we can hopefully have some more answers.

Tuesday, August 12, 2014

Spencer's Yearly Diabetic Check-Up

Yesterday was a good day. We had our yearly checkup with the Endocrinologist (we see his assistant at our 3 mo. check-ups). I was somewhat nervous to go, as I have not been monitoring Spencer very closely with everything else going on in our lives (11 pancreatic attacks with my husband, a newborn baby and trying to recover from toxic mold poisoning with a family of 9). Our diet has been decent (fresh eggs from our backyard, fresh ground and homemade bread products, good quality meat, fresh fruits and vegetables and limited sugars) and protandim when he remembers to take it. His A1c was an 8.2, which is not excellent by any means, but he has only been taking 1:15 carb ratio and he has not had any lantus (the long lasting insulin) in 3 months--for some reason he is refusing to take it). This tells me that after 1 1/2 yrs. he still has pancreatic function! The doctor was totally amazed by this. He was also very open minded and excited to see where we can go with the treatments for the mold poisoning (what we believe was the original cause) and the gymnema and pancreatrophin that we have just started on at the recommendation of a chiropractor that we have been seeing. The endocrinologist requested to personally see Spencer back in 3 mos. and has ordered the measure of his insulin producing cells to be retested at that time. Spencer was very excited by the doctors encouragement and now has a lot of motivation to get serious about healing his pancreas because there appears to be a lot of hope. I am just thrilled to be working with an amazing environmental dr. and chiropractor and now have an endo who is rooting us on in our efforts to heal!

Thursday, March 27, 2014

Our Toxic Mold Experience

The last goal I set on this blog was to move towards starting my family on the GAPS diet. My focus has temporarily changed, however, as getting to the root of our health problems that started with our exposure to toxic mold has become a matter of life or death for our family. If you want to make God laugh tell him you have a plan!

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.

November 1, 2012
We are sooooo excited to finally be moving into a nice family home back out in the country where we will be able to have more freedom, fresh air, and more animals!!!!! Before making this move we were a relatively healthy family and only visited the doctor a few times a year for minor issues and hadn't had a hospital stays for six years with the exception of the birth of a baby.

December 1, 2012
We receive the very unexpected and unwanted news that we are expecting another baby. I go into a 3+ month depression trying to accept this news and be happy about it. I had just taken off 30 lbs., we have no maternity insurance, we will have to buy a new vehicle to accommodate a family of 9, we already have three disabled children, and this will be my 4th c-section which will put me into a very high risk delivery as my uterine lining was already very thin with my last c-section. 
I had a copper IUD in place at the time of conception. I don't know if there is any connection with our exposure to toxic mold and the IUD becoming ineffective or not. It is not something that I will spend time investigating, but I am throwing that information out there in case anyone else had the same experience.

February 6, 2013
Rachel sees the doctor for cough, congestion, fever, and vomiting after cough. She is diagnosed with an upper respiratory infection.

February 18, 2013
Spencer goes to doctor with complaints of fatigue, 20 lb. weight loss in a month, increased urination, increased thirst, decreased appetite, and abdominal pain. He is diagnosed with Type I diabetes and is taken by ambulance to Primary Children’s Hospital for a 4 day hospital stay.

February 20, 2013
Larry is called at work to come pick Ben up from school because he is not feeling well.

February 25, 2013
Enoch is seen by the clinic for a concussion in a skiing accident. He also reports having had a deep cough since having the flu a month ago. He is diagnosed as having allergies which is believed to be causing the cough.

March 7, 2013
Rachel sees the doctor for cough, head congestion, ear pain, and chest congestion. Her respiratory and cardiovascular seem to be ok and she is put on an antibiotic for an ear infection. 

March 12, 2013
We take our three youngest children (Ben, Bekah, & Rachel) to their three year visit to John’s Hopkins hospital in Baltimore Maryland for an evaluation with the rare disease that they have, ataxia-telangiectasia (A-T). We are so relieved to learn that overall the twins are doing incredibly well (in fact, they labeled them as being in the top 5% of A-T children that they have seen from all over the world) for their age and diagnosis. It is confirmed that Rachel too has A-T at this appointment.

While at this appointment they are very concerned about our children’s coughs that they have recently come down with, especially Rebekah and Rachel’s coughs and we are given studies and an education on lung disease and how children with A-T die from this condition. They send us home with a prescription for a very strong antibiotic for Rebekah & Rachel and ask us to please follow up with our local doctor as this is a potential life threatening situation for our children.

March 28, 2013
We e-mail the people that we have a rent-to-own contract with and let them know that our intent is to still close by the end of May. Our income looks good and we are just waiting to receive an offer on an investment property that we own. We are told by our landlords that if we do not close by the end of May they will be raising the price on the property.  

April 4, 2013
We are devastated to come to the realization that we will probably not meet the May 31, 2013 deadline to purchase the property because the offer that we thought we were going to get on our investment property falls through. As we are unable to pay more for the property, we notify them in writing to opt out of our purchase option.

April 9, 2013
Rachel goes to the doctor for coughing and congestion that has been going on for 6+ weeks. She is having coughing episodes 3-4 times per day that sometimes lead her to vomit and the other night she was coughing so extensively that her face was starting to turn blue. She is diagnosed and treated for seasonal rhinitis and cough. John’s Hopkins Hospital is contacted to see if they have any further recommendations. If breathing problems return we are instructed to return to the clinic/ER asap.

April 22, 2013
Larry has his first pancreatic attack. He toughs it out for 3 days thinking it is gas pain.

May 7, 2013
Larry woke up at 2 a.m. because of excruciating abdominal pain. Finally went to the clinic in the afternoon for an appointment. Larry is nauseous and the pain is causing shallow breathing. Larry is hospitalized for three days and diagnosed with acute pancreatitis.
Pancreatitis is an inflammation of the pancreas and requires immediate medical attention. 80% of pancreatic attacks are caused by alcoholism or gall stones, neither of which applies in our situation. Recurring pancreatic attacks can lead to death (because of damage done to the pancreas and the need to remove portions of it), diabetes, or cancer. It is at this time that we learn that Larry’s grandmother died of pancreatic cancer at the age of 49. Larry is 46. Cancer is ruled out at this time, but could be in the future if these attacks continue to reoccur.
We start to question if there is something in the house that is making us sick?????? We start to wonder if maybe there is a reason why we have not been able to purchase the property??????

May 10, 2013
We have basic water tests run (Total Coliform and Escherichia Coli) from four different sources in the house (our shower, laundry room sink, upstairs bathroom sink, and the kitchen sink). All of the tests come back normal except for the Total Coliform test taken from the kitchen sink. The sample did contain total coliform which indicates an increased probability of disease causing organisms being in the sample. The sample did not meet the specification for potable water as established by EPA. We contacted the public health department and were told that because the kitchen sink was the only water source with a problem that it was most likely the aerator in that sink causing the problems. We took the aerator off and boiled it and swabbed it with a chlorine solution. After talking to our landlords we learned that the water testing they had done in the past had come back very good and their well was 200+ feet deep so we turned away from water contamination possibilities even though there are several other tests that could still be run.

May 15, 2013
I wake up in the middle of the night and the thought comes into my mind that it is the birds in the roof causing us problems! Birds in the roof, what do they have to do with anything???? I had never really paid much attention to them flying into the roof until I had that thought. I spent the whole night researching diseases caused by birds. I read about how “airborne spores from drying feces in air ducts and vents can settle on exposed food and transfer diseases.” Another interesting fact that I learned was that bird feces if microscopic pieces break off and become airborne they can contain dormant fungi and/or bacteria. When breathed into the lungs, the warm, moist environment of the lung lining provides a breeding ground for the infectious agents. These type of infections can also cause coughing, restricted breathing, and general body fatigue.
I also read that in rare cases infectious agents, such as candida, can cause pancreatitis through bird droppings.

May 16, 2013
I call our landlord and express my concerns about the birds flying into the roof and causing possible problems. I briefly share with her the severe health problems that our family has been through since moving into their house. She dismisses our health problems as just a trial that our family is going through and is very adamant that it has nothing to do with their house. There is not even a commitment or offer to come and look at and/or fix the problems with the holes in the roof. This is very frustrating to us as we have tried to be good tenants always paying our rent early and taking care of the property. This is the first time we have contacted them about any concerns with the house and we are quickly shot down even though having a holy/leaking roof is a huge problem that should not be ignored by any landlord.

May 17, 2013
I spend most of my day on the phone with pesticide companies trying to find out how to have our roof inspected. In the end I learn that they will do nothing without the Landlords permission.

May 18, 2013
I receive a phone call from the landlords that they are on there way to Malad to inspect the roof. She is still very adamant that there are no birds flying into the roof. After a brief inspection from the master bedroom window, they witness the birds flying into the roof and commit to come back the next weekend and repair the holes.
While at our house they experience a couple of Rachel’s coughing/breathing attacks and the landlord comments how she probably needs to be checked out as it almost sounds like pneumonia. Her sickness is something that I have been dealing with and trying to get help with for several months now!!!
I also express my concerns again that there is something in the house that is making us have constant health problems. Once again our landlord is very adamant that there is nothing in the house causing these problems.

May 20, 2013
Rachel is seen at Primary Children’s hospital for her continued cough and throwing up mucus. Whooping cough, RSV, and fluid in the lungs are ruled out. She is diagnosed with a viral infection and sinusitis. We are given a strong antibiotic and told to contact an ENT doctor if symptoms do not clear up in a week or so.
I start to research other possible causes of chronic and even life threatening sickness that we have experienced as a family since moving to our new home. I research everything from formaldehyde, to radon, and finally molds. The one that seems to be the most fitting for what we are going through is toxic mold. Even though we have not visibly found the mold (we also have not looked very hard) we have several of the highest risks factors in our house for mold—leaking roof, wallpaper, a basement, and an unvented bathroom. We order an ERMI mold kit to test for what mold species are present in the home. 

May 22, 2013
Jill sees doctor for sore throat and nasal congestion. Strep test comes back negative. Diagnosed with allergies.

May 23, 2013
Thanks to some very generous family members who were willing to watch our children, we are finally able to get away for a few days for our anniversary. We have a wonderful time. One of the things that we discussed while away was our concerns with all of the sickness that our family had experienced while living at our new house, especially with a newborn on the way.
After reading about how infants can experience pulmonary homorraging and die from repeated exposure to mold we decide that this is not something that we can even take a chance with. This information coupled with the high risks for all of our A-T children and our whole family for that matter, we make the decision to move before our baby is born in mid July.

May 25, 2013
Our landlord returns to patch the holes in the roof. While there he comments that the roof really needs to be replaced.
Jill wakes up with half of her face numb. By the afternoon her eye is going blurry. As we are on vacation, we go to an instacare clinic in Utah County on our way back to pick up our children. Stroke is ruled out and I am diagnosed with Bell’s Palsy and put on an anti-viral medication and a steroid. The next couple of weeks are very challenging as I have to now take medication that is always a risk when you are pregnant, I have a hard time eating and seeing out of the one side of my face, and I have to wear sunglasses and constantly put eye drops in my eye because I am not making tears and my eye is severely dilated.
We miss being able to visit with our family and get home late to see our children because once again we are at the doctor.

May 27, 2013
I talk to our tenant who is in the house that we had moved from, who is now on a month to month contract,  and ask her if they can please be out by the end of June.
I call our landlord and inform them of our intent to move out by July 15th because of our continued health problems.

May 30, 2013
Larry goes to the ER because of an accident at work. He ends up with 20 stitches in his finger and is very lucky that he missed his tendons or he would have had to have had surgery.
Right before the accident happened, he reported that he had a sudden crushing pain in his lungs on the left side. He was hooked up to the EKG machine and several other heart tests were performed. Luckily, everything checked out to be ok.

May 31, 2013
Enoch sees the doctor for breathing problems that have been going on for 4+ months. He has been having a hard time since his last cold in Jan./Feb. He gets really short of breath, wheezes, gets nauseated, lightheaded and feels a burning in his chest every time he exercises. He denies problems with breathing during rest and is short of breath only when he exercises. The problems of allergic rhinitis and exercise-induced bronchospasm are addressed.

June 4, 2013
My friend, Jen, from Pocatello (a town 45 min. away from where we live) learns of our situation and offers her furnished, unused  basement to us to live in if we need it. I tell her thank you, but we only have to make it to the end of the month so we should be ok. I am praying that we make it to the end of the month before we experience anymore health problems, but I am relieved that we have somewhere to go if we need to. It is very difficult to find a place to temporarily relocate with a family of eight.

June 5, 2013
I have known for about a week now, after visiting with other moms who have been through similar situations as ours, and doing research on the internet, that if stachybotrus (black mold) spores are found in our house that the only way to get better is to literally leave everything behind and start a new life. The spores get into everything and they are so dangerous. The only way to get rid of them is with 500 degree+ heat. If we were to move out and take our possessions with us we would cross contaminate our new home and bring the problem with us.
I call the insurance company that we have our renter’s insurance through and am devastated to learn that we are only covered for water damage or fire and they have completely washed their hands of any mold issues, even though they know that black mold is just as destructive to possessions as fire. We are very upset by this news because of the unknown to our future and the financial debt that we are already drowning in because of all of our medical bills, time off work, gas bills and specialty items that we are having to buy because of our situation are starting to pile up.

June 6, 2013
Larry has another pancreatic attack and is admitted to the hospital for a 3 day stay. We are thinking that we might be taking Jen up on her offer as we are really starting to believe that there really is something in our environment triggering these episodes.
The trip that I had planned to Nevada for my niece and nephews graduation and to visit with my family has to be cancelled. I was really looking forward to getting away for a few days, but once again I have to take care of my SICK family.
We also realize at this point that Larry will not be going on Trek with our older boys scheduled for June 18th as the risks with his attacks are too high. He and the boys are very disappointed about this.
I call EMSL lab to check when the mold results will be back. They tell me Tuesday and I beg them to please get them to us ASAP.


June 7, 2013
We receive the mold test results back from EMSL Analytical. The ERMI Interpretation of mold comes back at a level 3 for moderate to relative moldiness. Further investigation is needed to determine if sources of mold exist. Although we are EXTREMELY RELIEVED to learn that the stachybotrus (black mold) spores are not showing up in the testing, all of the detected molds in the sample are considered dangerous and toxic, particularly aspergillus flavus which produces aflatoxins.
Aflatoxin is a type of mycotoxin produced by aspergillus molds. Aflatoxins are very toxic and highly carcinogenic. When a person takes in a high amount of aflatoxins in a very short time it can cause a variety of health problems including disruption of food digestion, hemorrhaging, coma, or death.

June 8, 2013
Larry is released from the hospital and spends the day with the children at Enoch’s ball games. I frantically work hard gathering up our belongings so that we can move to Pocatello and be in a different environment. I am so exhausted by the end of the day (I am now about 8 mos. pregnant) from washing and packing that I am literally crawling up the stairs and wincing in pain to get everything we need and get our family to a “safe” place.

June 9, 2013
We all stay home from church and have a much needed day of REST!

June 12, 2013
Enoch sees doctor for throat pain and runny nose. He is diagnosed with an upper respiratory infection that appears to be viral.

June 18, 2013
Larry has another pancreatic attack. He takes his pain meds and we take him to the Portneuf Emergency room where he is once again admitted to the hospital. By the time we get to the hospital, he is very weak and passes out while having an IV put in. This really freaked me out as my husband has always been very strong and I have never seen him so weak before.
The much needed shopping trip that I had planned was put on the back burner because once again I was taking care of my SICK family.

June 19, 2013
I spent a large portion of the day over at the hospital with Larry. They are having a hard time finding the cause of his pancreatitis and are seriously considering taking out his gall bladder. We both highly suspect that it is possibly mold related. 70% of all pancreatitis is caused by alcohol which is a toxin. The aflatoxins that are produced by some of the molds detected in our rental home are also toxins that can build up in your body and cause all kinds of health problems, including inflammation which is what pancreatitis is--inflammation of the pancreas. Larry is getting headaches from all of the medicine and is not feeling well and I spend much of the day researching diets for him to cleanse his body and help him get better.
I had planned on being in Malad today packing up the house, but once again I am taking care of a family member who is SICK.

End of June 2013
Ben is at his cousins house playing while we are madly trying to get our things moved. I receive a phone call that he has fallen off of his bike and they think he has broken his arm. I meet them at the Emergency room and it is confirmed that his arm is broken. This is the first broken bone that we have ever had with any of our six children. 

July 2013
We get moved back into our old house two weeks before our baby is born. Nathanael Joseph joins our family on July 19th and he appears to be healthy (phewww!)
Everyone seems to be doing better--coughs have went away and no more asthma complaints.

August 2013
Larry has his 5th pancreatic attack when Nathan is just 3 weeks old. While in the hospital my very manly husband calls me crying because he has tried talking to the doctor on call about the possibility of his recurring pancreatitis being related to toxic mold and she has essentially called us "idiots"! She is very adamant that he just needs to get his gall bladder out and that will take care of the problem even though the testing that they have done shows no signs of gall bladder blockage. I am not very surprised by her reaction as I have tried to tell EVERY doctor that we have encountered about our "families" experience and our suspicion that this is related to toxic mold that we moved into. Not ONE took the time to look at all of my documentation, records and information from doctors in their own field. We did have one doctor in Pocatello who ran a mold test that came back negative. I don't believe it was the right kind of test and I sense that he ran it just to get me to shut-up! 
Larry is transported by ambulance to the Ogden Regional Hospital where he stays for 4 days. While there they determine that it is most likely not his gall bladder causing the problem and they fail to give him adequate fluids with the amount of pain killers that they were pumping through him. For reasons unbeknown to us, they send him home still SICK and he ends up back in our local hospital that night on an IV to get all of the junk flushed out of his system.

August 27, 2013
Because the medical community was not finding any answers as to the cause of his pancreatites (which is usually caused by alcohol or gall stones), we felt it was important to do further investigation as to the root of this problem and we paid $700 out-of-pocket to send in a urine sample to real time labs and have his body tested for mycotoxins which are caused by certain types of molds. Mycotoxins are some of the most toxic substances in existence and can wreak havoc on your health.
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.
After receiving these test results, I spoke with one of the leading toxocologists in the United States, Dr. Thrasher, whose specialty is toxins and how they affect human health. After reviewing the dust sampling that was taken out of our rental home, Larry's test results, and the types and series of health problems that we experienced while living in the home he verbally confirmed that our health problems were directly related to our exposure to toxic mold while living in your home. He also indicated that he wasn't so sure that there was not stachybotrys (black mold) present at the home, but it may not have shown up in the dust test because they are very sticky spores and we may not have gotten them in the sample we took. This opens up the question of whether or not we have severe cross-contamination issues because we chose to move all of our stuff. Grrrrrr!!!

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:
1. Larry--passed one eye and failed the other
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!