Meeting with Oncologist

Even though Larry and I knew that we would likely choose not to go the traditional route of chemo and radiation we chose to meet with an oncologist anyway, just to make sure that we had covered all of our bases and weren't missing something. We ended up meeting with him for about three hours, and even though we did learn a lot, it turned out to be one of the most discouraging and depressing meetings of our lives.

We discussed everything from all of the options available for treatment to preparing for Larry's passing. It was hard, and even discouraging, to actually see the tumors and cancer on the imaging that the oncologist shared with us. It just made everything too real to actually physically be able to see the enemy that we are fighting.

The hope that the oncologist gave us in the medical field was maybe a year to live, instead of the three months that we had been given, if we were to do chemo and radiation. If we were to go down that road, however, there was a whole host of horrible side effects, including death. In our minds why would we want to spend the very limited amount of time we had left with Larry sick from the chemo and radiation and the possibility of dying anyway from the treatment. 

As we shared with him the different treatments we were doing (organic fruits & vegetables/juicing, vitamin c infusions, hyberbaric chamber, B17, essiac tea, plant based minerals, milk thistle, fenbendazole, etc), and our intent to go to a cancer treatment center in Mexico, he shot down all of them, including stories and his experiences of how these were false hopes. As these things were the only things giving us hope for healing and remission it was very hard on both of us to have the hope we had smashed into a million pieces.

When we returned to the car, it took us a good 30 minutes to even be able to compose ourselves enough to drive anywhere. Larry was crying inconsolably because he really wanted to be here to raise his children and did not want to leave them without a Father. I was finally able to dig deep into my emotions and remind Larry that we needed to change our paradigm. Before we went into that meeting we were full of optimism and hope and I knew that to have any chance of fighting this we needed to find that again. I also reminded him that we needed to believe what we could see with our own eyes. We had seen improvements and progress towards healing with the treatments that we were doing and we needed to keep believing that they could work and keep hoping and praying for a miracle.

Even though it took us a few days to get our heads on straight, we are now stronger than we were and more determined than ever to fight and beat the cancer that is trying to take over his body. We recognize that we have all the odds stacked against us statistically (stage IV pancreatic cancer that has metastasized to the liver, coupled with the complications from pancreatitis), but we are going to put in the work and trust that if it is God's will we will see a miracle! With God's help we know that all things are possible.

The Faith Not To Be Healed

I have been looking for this talk for sometime and a good friend of mine found it and shared it with me. I listened to it on my way to work this morning and was glad that I had napkin in the car. I promise that you will be uplifted and comforted in the words that Elder Bednar has to share. In light of Larry's current health status this talk really hit home.

Trip to NV, Biopsy, & Nate's Birthday

It has been a long weekend and an even longer day. The day started at 5 am, leaving for Salt Lake at 6:30, and getting home at about 10.

Before I knew about all of the latest things going on with Larry, I had planned a trip to go and visit my sister, Janice, in NV. With Larry's appointment being today, I made the decision to still go last minute even though I knew it would be a quick trip and a lot of driving. I'm glad I went, as I don't get to see my sister very often, and it helped keep my mind off of today's procedures. We were greeted with warm hugs, delicious food, and were able to take a tour of the back country surrounding Mina. The kids and I also got to listen to the complete Unabridged version of "Where the Red Fern Grows" and Anne of Greene Gables" and we sang the Nevada state song over and over again so that I could learn it. Funny story--Nate's second grade teacher, Mrs. Wait, is also from NV. She taught her class the ID state song immediately followed by the NV state song. The whole class even sang it to me when I came in to help in the class one time. Sadly, I did not know most of the words to my own state song until now!

We got home from our trip last night at about 8 pm. At about 8:30 we had a whole support team show up at our house. We spent about an hour talking, reminiscing, and telling stories. Before they left Larry and I were given priesthood blessings (a priesthood blessing in The Church of Jesus Christ of Latter-day Saints is a prayer for healing, comfort, or counsel given by a Melchizedek Priesthood holder, who lays his hands on the head of the person receiving the blessing) to help us face the upcoming giants that we had awaiting us. Truly we have been so blessed to be surrounded by so many wonderful people. If Larry's healing was only conditional upon people's love and concern for him and our family, complete healing would have happened a long time ago.

After a two hour drive this morning, we arrived at Larry's appointment to have his biliary tube changed and have the long awaited biopsy performed. We even wore our matching, newly purchased "Pancreatitis Warrior" t-shirts (be sure and enlarge the picture and you will see a perfect description of life with pancreatitis). Somebody put a link for this on the pancreatic facebook page that I am a part of and I just had to order them as they represent my family so well. Do you know how many times my boys and Larry have said, "I'm Fine" when they are critically injured or on their death bed? Just recently when Enoch had the emergency eye surgery for his accident the first words he said after coming out of anesthesia were, "I'm Fine!" as he immediately conked back out on his pillow. Before Larry left for the procedures it broke my heart when he said, "You know if they find cancer, it is pretty much a death sentence." This is something we have mostly avoided talking about through this whole process. What we did learn today is that the growth on Larry's liver is not an abscess and we will not have the results as to whether or not it is cancerous until Wednesday. I am still holding out hope that it is a benign growth which can be a consequence of having pancreatitis. Maybe everything won't be fine in the way that we want it to be, but because of the gospel of Jesus Christ everything will turn out fine in the end.

Today was Nate's 8th birthday! It was certainly not my vote to have this procedure on his special day, but I am so grateful to my good friend Talina, who took him under her wing and helped make it such a fun day for him! Honestly, I'm not even sure that he missed us or noticed that we weren't there because he had such a fun filled day and she even helped him make his own birthday cake!!! In light of other good news, Nate's cousin, Jessica, had her baby today (on Nate's birthday). I sent a picture of the baby to Talina to share the good news with him. Nate's response was, "Awe, I have a twin! He then turned to his friends and said, "Hey guys, guess what I got for my birthday!?"💙 We were released from the hospital at 1:30 and the plan was for us to do some shopping on the way home and have pizza, cake, and presents when we got home. Like Dr. Ott commented at the hospital, Larry's case is an anomaly and the events that took place on our trip home would help support that narrative.

After leaving the hospital I ask Larry what he thought we should get Nate for his birthday. After about a half hour he commented that we should buy him a high quality BB gun. He had received a cheap daisy BB gun for Christmas and it broke in half after just a few uses. Larry mustered up his remaining energy for the day and spent a good half hour shopping for the perfect gun for his boy. I then made a trip into Walmart when we got to Brigham City to buy wrapping paper and pizzas for our party. Upon returning to the car I became very concerned about Larry. He was shaking uncontrollably, had turned off the a/c in the 100+ degree car, and he felt like he had a fever. I called Dr. Ott and he told me to drive to Logan and take him to the ER as sometimes people have reactions to the procedure that he had just received. 

After dropping Larry off at the ER, I called a friend and was able to take my refrigerated food to her house so it wouldn't spoil in the heat. I then returned to the ER where they ran more tests on Larry and performed another CT (ugh!) on him. After a bag of fluids, and receiving all of the test results back, he was cleared to go home as everything had returned to normal. We arrived home at about 10:00--just in time to get his feeding bag ready again and spend some time with the children before putting them to bed. I think we will sleep very well tonight (or at least I will, Larry is still struggling to get his pain under control😓).

Results of Larry's CT Scan

It is early in the morning, but the results of Larry's CT scan, that we received yesterday, weigh heavily on my mind. We received some very good news and some very unsettling news. The good news is that our prayers are being answered and the inflammation in Larry's pancreas has gone down down, despite the fact that he feels like he has had some mini pancreatic attacks likely from the smoke in the air.

The unsettling news is that they have found two spots on his liver that are either abscess's, which is a common side effect of chronic pancreatitis, or cancer that has likely come from his pancreas. The doctor said that typically you will see a fever and elevated white blood count with the abscess's, which Larry has neither. With that being said, Larry often does not present with the "typical" symptoms which could be the case in this situation. When he was admitted to the U of U back in January, they diagnosed him as having abscess's and he was on a very strong antibiotic regimen for a couple of months. If my memory serves me correctly, that despite the awful side effects of the antibiotics, the abscess's did resolve. I don't remember them biopsying the spots on his liver at that time, so my other thought is that it was possibly cancer back in January and they missed it. We were very adamant during that hospital stay that they be extremely thorough in ruling out cancer, including having an MRI done, and they assured us that there were no signs of cancer.

If it is cancer, that could explain his continued pain and weight loss. They will be doing a biopsy on Monday to determine if it is cancer. The doctor said that if it is abscess's, he will be immediately admitted to the hospital for three days and started on an antibiotic treatment. If it is cancer then we are looking at the chemo route. The one other scenario that I have thought of is that it could be a benign tumor, which in my mind would possibly be the best case scenario unless they are causing problems by pressing on blood vessels or nerves. There are so many questions yet to be answered.

Through this eight year process, Larry's life has been preserved repeatedly. I just have a hard time believing that the Lord has brought us this far, and miraculously opened up so many doors for us to have the TP/IAT surgery so that we can have a shot at a normal life, to have it all fall apart at this stage in the game. With that being said, I have prayed repeatedly that if it is the Lord's will that the doors will continue to open and if it is not the Lord's will that the doors will close. As hard and scary as it is, I have to continue to trust in the Lord and his timing, knowing that things will come together according to his will and timing and that he will allow all things to work together for our good. As I have watched the hand of the Lord in my life through the years, I have learned that the Lord can see things that I often cannot see and things happen for a reason.

Needless to say, it is going to be a long weekend and Monday cannot come soon enough!

The Real World, TPN 101, & Guitar Lessons

The highlight of our week was attending the Logan, UT temple last Friday to do proxy sealings with a group of friends. Due to all of the covid restrictions, it has been a very long time since we have had this opportunity. The Spirit there was so strong and the feeling of peace was incredible. As we got onto the the elevator, after our session, and were heading downstairs, I made the comment that it was going to be hard to go back to the "real world". One of my friends commented that being at the temple was the "real world". What an awesome reminder of how this earth life is just a test and in the end, if we stay on the covenant path, this will be our permanent reality.

In regards to Larry's health, he has been able to maintain his weight of 143 lbs. for the past couple of weeks, which is great news after the initial 8 pound loss he had after starting the TPN a little over a month ago. He is now the same size as Spencer and luckily Spencer has extra clothes that he has been able to borrow, including an extra suit for church. They adjusted his formula for the third time this week which has significantly reduced the insulin he is having to take, as the amount in the sugars has been significantly reduced and his protein has increased. Unfortunately, his energy and stamina have yet to return.

Last night Larry had a rough night's sleep as he was up a lot in level 7 pain in his middle to lower back (typical spot for pancreatic pain). He also had an episode yesterday that felt like a pancreatic attack. He will be having blood work drawn tomorrow and a CT scan on Tuesday to get a better picture of what is going on. A couple of thoughts we have had is that possibly his biliary drain, that he had placed at his last hospital stay, is giving him trouble or Larry had the thought that possibly the smoke in the air is causing his pancreas to act up. Through the years there have been so many factors from environment, to foods, to stress, that have caused these flare-ups, smoke being one of them. 

As Larry is currently not able to eat or drink anything by mouth, except for a small sip of water with his morning pills, finding solutions to help get the inflammation in his pancreas down can be tricky. After asking for possible solutions on a face book group that I am a part of, I received the following ideas: coffee enema, DDR prime essential oil (the main ingredient in this is Frankincense which I have been using), laser treatment (thanks to Larry's brother we just happen to have one and have started using it), Renu 28 (have this and have started using it), gi gong doctor (specialize in helping to heal the body by moving the qi-life force). I love gathering other people's ideas because through the years some of the most helpful ideas, in regards to our health struggles, have come from people that I am surrounded by.

The whole TPN lifestyle can get very wearing and old for all of us, but it is our hope that allowing the pancreas to completely rest will give us the desired result of significantly reduced pancreatic inflammation, so we continue on with this process. I especially feel sorry for Larry who has missed out on so many delicious meals because of his restrictions. I am so impressed with his self control and cheery attitude through it all. In the beginning I was terrified and extremely reluctant to learn the TPN process, as this feeding goes through a pic line that runs through his heart. There is so much to remember and so much that can go wrong. I am happy to report, however, that I could now almost do it in my sleep and we have remained infection free thus far (keeping my fingers crossed)! 

As some of you reading this blog may be experiencing the same thing, I want to assure you that if I can do it anybody can do it, and it is not as scary as it initially seems. It has really helped me to get my younger kids involved in the process. The steps that we go through everyday to make it all happen are:

1. Get TPN bag out of fridge at least an hour before we start his feeding (you don't want a cold liquid running through his heart).

2. Insert the vitamins and insulin into the bag using a syringe, making sure that there are no air bubbles in your syringe. Nate and Rachel love disposing of the needles into what Nate has named "the red gas can". I then shake the bag for 30+ seconds to distribute the vitamins and insulin throughout the formula.

3. "Spike" the bag and insert the tube for the feeding into the bag. We have to hold the bag up and prime the tube making sure that we get all of the air bubbles out. While we are doing this, Nate has learned to change the batteries in the pump that have to be changed on a daily basis. We also go through several alcohol wipes making sure that anything that is touched or exposed remains completely sterile.

4. Strap the bag of formula into Larry's backpack. We have termed this process "strapping the baby into it's car seat"and then thread the tubing into his machine and set it by Larry's recliner so that he can start the machine when he is ready. 

These feedings take 14 hours a day. Ideally he starts the feedings at 6:00 pm and is finished by 8:00 am, but it doesn't always go as planned. As long as Larry is not on pain meds, he can set things up for himself, but we try to support him as much as we are able because it is a very monotonous process and I know that it really helps him to keep going to have the support.

Last Christmas Enoch bought Larry a guitar so that he could learn to play. Now that he has significantly had to reduce his time at work, he has had more time for things like this. It was so fun tonight to watch Enoch giving his Dad guitar lessons. This has been a fun skill to help pass the time as he has been so restricted in his ability to do everything that he is used to doing. Can't wait until he is serenading me with romantic love songs!

Video on Family Councils

Happy Birthday Rachel!!!

My good friend, Pam, does these birthday posts on face book for all of the A-T kiddos. Her son, Jared, who also had A-T, gained his angel wings a few years back and LOVED getting birthday wishes from his A-T friends from all over the world. It was the highlight of his birthday! He made his mom promise that she would continue in the A-T fight in behalf of all of the A-T kids until a cure was found. This is one of the many things that Pam does to further this cause and she always amazes me with her incredible talents and creativity!!!

Pamela Skyberg Digby added a new photo to the album: A-T BIRTHDAYS — celebrating a birthday with Larry Ward and Jill Ward.

July 6 at 11:45 AM  · 

The beautiful “Rachel Ward” of Oxford, Idaho, USA has just turned years old and being ELEVEN really is a #PBD ~ Pretty Big Deal!

Rachel is fun!

Rachel loves to dance.

Rachel loves animals.

Rachel loves to swim.

Rachel plays the ukulele.

Rachel would love to be an artist when she grows up.

Rachel has five brothers and one sister and she loves them all!

Rachel is very kind and thoughtful. She is a great help at home. Her family has enjoyed all of the cute and personalized handmade cards she has created for them over the years.

Happy Birthday, Rachel! You are loved so very much!

Please join in as we send Rachel some birthday love and our Best Wishes from all around the world! #HB2anATkid #LivingWithAT

Rachel, her brother Ben and her sister Bekah ALL THREE need a #Cure4AT

Happy Birthday America!!!

I love celebrating the birth of this country that I LOVE so much! I was so lucky to be born on July 3rd and every year I get to celebrate my birthday in conjunction with all of the 4th of July festivities! For the past several years, we have celebrated the 4th of July in Malad with our family. Normally we go to the parade, the shoot-out, followed by delicious BBQ food at his brother's house, sometimes the melodrama in the afternoon, Malad's Got Talent, and fireworks after dark! Due to Larry's health, we had a very scaled back version of our normal activities. Larry was only able to make it to the parade and he didn't even make it to the meladrama play with me in the afternoon that he was hoping to go with me to for my birthday. I was very surprised, however, when we got home from the play, and I walked into the kitchen where Larry was holding a cake with candles and everyone yelled surprise! Sadly, Larry was not able to eat any of the cake or any of the other delicious food that we had to eat. He said this was the most tempted he has been to eat since he started the TPN feedings. 

Through this process I think we have both developed a love/hate relationship with food. I have always tried to feed my family healthy. What I consider to be healthy has changed over the years, but dealing with the extremely unpredictable side effects of pancreatitis, has about killed my love or desire for cooking. I will cook a meal that he was fine with the day before and he gets to the dinner table and says he can't eat it. I will cook a meal that fits all of the "normal" pancreatitis friendly foods (low-fat, fruits, vegetables, whole grains, legumes, and healthy fats with careful portion control) and we could still end up in the hospital. The worst is when we would go out to eat together (something that I would really look forward to) and I would end up eating by myself because he wasn't able to eat anything. It has truly been a maddening experience for both of us! I look forward to the day when I get the courage to pull out my cookbook once again and have confidence that dinnertime will not end with a trip to the hospital.

Larry has only had a couple of good days since being on the TPN and of great concern has been his continued weight loss. About three days ago the doctor increased his feedings by 500 calories a day. He seems to be doing better on the increased calories and I am praying that we are turning a corner. I also pray everyday that the inflammation in his pancreas will significantly decrease (or even go away would be fine with me) before our next CT scan which is scheduled in a few weeks. I also pray that his body will get stronger so that he will be able to withstand the rigors of his upcoming, life changing surgery.

Even though we are facing some extreme challenges, I still count my blessings everyday because we have truly been richly blessed. Just the fact that we have the opportunity to have this surgery and have a new shot at life is a miracle to me. I have also been truly amazed at the doors that have been opened for this surgery to happen, both financially and with our temporal needs being met. We are both so grateful to God for all of the wonderful family and friends that we are surrounded by. Your love and prayers have truly sustained us through these very difficult times and for that we are grateful.