My friend Nicole sent me this message today… “We started this morning with a prayer and a fast for Amos and your family. Frankly we have never sat together and done this as a family. My daughter Lacey 8 year old during sacrament started crying. She was saying I’m so hungry. I told her it was good to try and fast but if she needed to she could eat. With more tears she said then Evie’s dad won’t get better!!! It was the sweetest thing. I talked to her about how Heavenly Father appreciated her effort and it’s really the first time she really fasted and it was up to her if she wanted to eat. I said a silent prayer to comfort her and let her accomplish this task because she was so concerned for Evie’s dad. She made it and fasted. Thank you for being such a good example of faith so I can follow your families example and teach my kiddos! I hope you can have some peace today.”
We are thankful for all the people who fasted for Amos today. I know good will come from it and after today, we are desperate for a little good.
While his white blood cell counts improved today, his billiruben got worse and is back up to 9.4.
The draining procedure for the lungs went well yesterday. I was feeling so good last night as they drained one and a half liters from his chest and his oxygen and heart rate numbers started looking much better.
Sadly, the improvement didn’t last and his lungs filled back up overnight.
Our entire stake fasted for Amos today and it was wonderful to be in my ward and feel the love of our friends.
After church the kids got to come see daddy. He hasn’t been very responsive today and that was hard on all of us.
The Johnstone cousins came out to be with us at church and the hospital and helped at home. It’s so great to have family around.
Dad and Tracy and her kids have taken good care of us today and I got to meet Caitlyn’s baby. She is adorable!!
Bishop Elwood came to see how he was today but couldn’t see him because he was doing a scan. They scanned his gall bladder and we are still waiting for results on that.
Amos’s Gilbert High friends came for a minute and so did my nephew Spencer and my sister Christy.
Our friends the Rawls were fun visitors. We appreciate them so much. They brought Amos a cool Super Man lanyard like the Captain America one Jef is wearing. It even lights up. I think we’ll try it out tomorrow.
I’m so proud of this girl. She has so much light to share with the world. She loves her family and her Heavenly Father more than anything and I can’t wait to see how she continues to shine.
They took us to the top of a mountain past Beverly Hills this morning. We were doing some filming for the portion they will show this Tuesday just before her performance.
We arrived before the film crew and had a quiet moment together out of the city to pray together. It was a very special and peaceful time for us after news that Amos had had an excruciating night.
Many doctors feel that upping his pain meds in his condition would be very dangerous. His heart rate is up and he is now requiring oxygen. For this reason, I am flying home for a few days to help him get through these hard days. Many thanks to the good people at America’s Got Talent who arranged that and care so much for us.
The doctors said they couldn’t find a place to decompress the liver. It was very difficult to get the information they were looking for without the scan they needed yesterday. They said trying to use the ultrasound was like comparing apples and oranges. They do show many issues with his liver but see nothing they can do about it. They are going to consult with Dr. Lanauze for ideas.
Amos got some TPN nutrition last night and His billiruben numbers went up to 9.8 from 9.1.
With many people giving up on hope for him, I asked him today what his “hope number” was. He asked me what I meant and I told him it was like the pain number that they are constantly asking him except it was a scale of how much hope he has that he will survive this from 1 to 10. Without another thought, he said “10!” No matter how bad it gets, his hope number is what matters to me.
I can’t explain to you how much I love this partner of mine. Yes, life is harder than it has ever been for either of us right now but we will have each other forever and today is just a small moment in eternity.
The kids got home to see daddy in terrible pain. They made little notes for him to try to cheer him up.
Oxycodone doesn’t seem to be getting near the magnitude of pain he is feeling today. He says femoral artery feels like a thousand bees are stinging him at once. He also started the gall bladder and liver pain today along with fever and nausea on top of his gastrointestinal pain and pain at his ostomy.
We went to the cancer center for scans and they wrapped him up like a burritto baby in a big swaddling blanket so he couldn’t move while in the scan machine. He said it was actually really relaxing and he fell asleep.
We saw the ostomy specialist today but she couldn’t find the cause of the pain. She thinks Dr. Gimball, who did Amos’s ostomy surgery is the person best qualified to figure out the mystery so she is helping us get an appointment with him in the near future.
Amos had to cancel work for the rest of the week even though he really didn’t want to lose more hours. He can’t walk and can barely move as of now.
He was sad to miss Kirra’s band concert tonight. She did an amazing job on her flute.
Sister John brought him some nice broth to help settle his stomach while we were gone.
Many of you saw the America’s Got Talent promo today with a flash of Evelyn. The things happening to us right now are incredible. I can’t express how strange it feels to have such extreme simultanious emotions. I think I would burst if I didn’t have all of you to share them with. I can’t imagine how Amos must feel. The pain brings him so low while his excitement for Evelyn takes him through the roof.
Congratulations to Kirra on winning the spelling bee for her grade today! She now gets to compete against the entire school. Thanks to Grandpa Mann who has been constantly quizzing her on spelling words since he’s been here.
Tonight we are celebrating Grandpa Mann’s birthday a week early when we bring my sister’s truck back. Our cars are all fixed and I’m grateful for that. Our kids are going to be so excited about the shiny new fuel pump and the 8 new tires they just got for Christmas, Haha. Actually, we are really excited about our trip to San Diego from the Jack and Jill Foundation which will be our real family Christmas gift this year. We just got our itinerary and read a blog from another family who just went. I didn’t realize that they pay for everything to the smallest detail including snacks, souvenirs and photography. They even have a special back stage tour of Sea World planned for us where we get to pet some dolphins. This is going to be the best vacation ever.
The Ritalin is not giving Amos the energy he needed. It seems to be pulling him down. This is kind of funny because it acts like speed in a normal body but a downer in a hyper active body. That’s why it is often prescribed for ADHD. His mom always did say he was a squirrelly kid!
He seemed a little better to me despite the lack of sleep he got last night. We had a small problem with Porter forgetting about his math homework until Sunday night. My kids don’t normally do homework on the Sabbath, but I’m so grateful for a husband who can actually help my kids with advanced math homework. Amos has this special gift of remembering and being able to recall everything he’s ever learned. He stayed up with Porter until midnight completing the assignment. I literally cut two cubes of butter to the 2/3 cups mark the other day while doubling a recipe because I didn’t want to add the fractions. I’m not sure if that’s a lack of smarts or just laziness. I like to think of it as brain conservation. We need our brains to be ready for important stuff like spelling bees right?
Everyone is always telling us we’re doing too much and we need to slow down. Today they might be right. We had too many important things happening so we did them all!
As we knelt for family prayer tonight, all of our children were aware that dad was done. He had no patience or enery left from the frenzied pace of the day. As we got in the car to leave our last event Porter reminded him of the great day we had and that being sick and tired doesn’t mean you have to be grumpy. Amos said, “you aren’t wrong but you aren’t helping.”
Let’s start at the beginning… He couldn’t find his bag with his ostomy supplies this morning and thought he left it at the church so he cut out the template wrong and it cut into his ostomy. I walked into the bathroom when it was time to go to find him bleeding from the whole in his stomach. Not a pretty sight.
9:00 to 11:00 am Brazilian Jujitsu
The Acostas put on an amazing women’s self defense class for our ward so now Evelyn and I can choke you out.
12:15 to 3:00 pm Hospital
Amos had an infusion and got his chemo pump removed.
Recording 1:00 pm to 3:00 pm
They don’t let the kids stay for the infusions anymore so I took them all with me to Stephen’s house to record Evie Clair’s new pop single. #loveyouonemoretime
Guitar Lesson 3:30 to 4:30 pm
Evie had a guitar lesson with Rick Dalton. He is the best so we try to catch him any time we are in Mesa. The fun part was that Evie has four cousins who happened to be in town who also took lessons from Rick and got to see him today teaching Evie. #K5
Christy’s House 3:30 to 4:00 pm
We had a few minutes to visit with my sisters and their kids and adorable grand kids while Evie was doing her lesson.
Ward Temple Night 4:45 to 7:00 pm
We love going to the temple. Amos said today his head was pretty foggy during the session and he felt bad for not being more attentive.
7:30 to 9:30 pm Family Party
We headed back to my sister Christy’s after the temple for a birthday party/baby announcement for Samantha/Cade. We also had to practice for the musical number for my other nephew’s homecoming tomorrow. This was the first time in a long time all 7 of us girls have been together. The tradition is for us to line up in age order and sing a capella. We did of course. Mom would be proud. #teampamalee
The men were more focused on the BYU game. Buddy said a blessing on the food and prayed for BYU to win the game tonight. Amos blames that prayer for the loss. By the end of the night Amos was asleep in a fetal position on the couch. Eddie even volunteered to carry him to the car. I would have liked to see that.
Some days my life doesn’t seem real. I walked through the hospital today thinking, “Is this really happening? Does my husband really have cancer?” It was kind of strange. This is Amos’s Nurse Practitioner, Leanne. She meets with Amos most chemo weeks and goes over labs. His labs are fine today except his platelets were low which may be why he gets bloody noses all the time. His cancer marker is at 4.8 which is 🙁 slightly higher.
We are still at the cancer center and have been here all day. Things were running slow here so we will be lucky to be home before dinner.
Amos had a difficult time sleeping last night and had a terrible headache today, but at least he is catching up on sleep now. I wish we had a room instead of a chair but he is making it work.
He has bishop’s interviews to do tonight so it will be another rushed day to get him fed and back to the church on time. He just woke up and feels terrible. He said he might have to cancel appointments for tonight. I have a feeling he won’t. Something always keeps him going.
I realized a couple days ago that I normally write a mutual theme song in August for the following year. I had kind of resolved not to put pressure on myself to do one this year. As I worked on finalizing my “Where Can I Turn for Peace?” arrangement for the studio, I thought that maybe I could turn this song into a mutual theme song. Somehow it worked out in my mind over the past few days and I was able to make James 1:5 (the LDS mutual theme for 2017) go with my arrangement using contrapuntal melodies. It has the new title of “If Any of You Lack Wisdom.” I kind of like it and I’m excited for you all to hear it. I am singing both parts so hopefully teenagers won’t think it sounds too “old-lady.” Stephen, my audio engineer, is doing some magic on it now.
Porter has little sisters peeling potatoes for dinner as we wait for daddy to get home from work. I’m excited to spend some time with Amos tonight. He should be coming out of the lethargy caused by the chemo and he might actually be able to stay up past 8pm. He will take a half day off work tomorrow so we can head up to Bishop’s Night at girl’s camp.
Someone texted me a short video clip of Evelyn singing Titanium on stage at camp. I’m not sure how she ended up on stage but she got quite a reaction. Since we have only lived in the area a short time, the girls and leaders in our area don’t really know of her talents. She loves seeing reactions of new audiences when she performs.
She’s fun because you can give her the name of a popular song and if she’s heard it, she can pull up the chords and lyrics on a device and sing it, arranging it on the spot with her own improvisational accompaniment on the piano. Her uncle Tom is the one who discovered she could do this when he came to visit recently. When she gets back we will do some live events on her Facebook page and you are all invited to participate. I think live events are the future of social media.
Thursday we find out if we are heading up to Utah for her to sing with Tim McGraw at the Stadium of Fire. Keep your fingers crossed. The judges are deliberating and will choose from the top 10. Amos will not be able to go since it will be chemo week, but he wouldn’t want her to miss it for anything. He is her #1 fan.
Tonight, an incredible group I sing with, Cinematic Pop, will hit the stage of America’s Got Talent. Today feels a little like the time I spent years of my life training to be an Olympic synchronized swimmer just to watch the girls I trained with win a gold medal at the 1996 Summer Olympic Games in Atlanta. Our music group is directed by Rob Gardner and America’s Got Talent only allowed him to bring a small portion of the group since we are so big. I was not asked to go, which is ok. As you all know, I have other things to deal with anyway. I will be performing with them on August 27th at the Mesa Arts Center. I hope you have your tickets.
Amos says every time he hears me say the word blog, he thinks of the rediculous show Dog with a Blog. It’s fitting for today since my little girls got to dog-sit the cutest, tiny puppies ever. They were in heaven.
I took Porter and a few of his friends out for a birthday celebration and one of his friends had 2 new puppies he couldn’t leave home alone. My girls were more than happy to help. Amos and the girls stayed home with the puppies Bambi and Chico while I got to take 4 handsome boys out for dinner and a movie. Now You See Me 2 was really good. They loved it. We all, including Porter, had a super happy day!
Amos was asleep as soon as I got home without an ounce of energy left. He said it was a good day with no issues. For a Monday after chemo, that is a miracle.
Amos lost another 5 lbs but is feeling good this time. I need to make sure he eats more. He is off to work today and he has church stuff tonight so I’m trying to find a time to get him to eat.
After a morning at the pool the kids and I came home to write letters to missionaries. I have 6 sisters and all, except one, have a son or daughter currently serving a full time mission. Missie has a son in Mexico; Amy has a daughter in Russia; Christy has a son in Washington; Phoebe has a son in Mexico and Sarah has a son in Brazil. I also feel that Carrie still has a son serving a mission from the other side of the veil. He was serving a mission in Mexico but had to come home early when doctors discovered he had cancer. Remarkably he was beating the cancer but was taken suddenly in a terrible motorcycle accident. I strongly believe the other five cousins are getting help from him in their work.
For those who may not be familiar with an LDS mission, these young men (18) and women (19) are called to an area of the world not of their choosing and at their own expense to serve teach the gospel of Jesus Christ for 2 years (men) or a year and a half (women). They agree to live by very strict rules with no cell phones or entertainment and write home only once a week.
Amos served a mission to Toronto, Canada when he was 19. His brother served in the same mission several years earlier which is very uncommon. Amos happened to live in my condominium complex when he moved to Provo the summer before starting at BYU. We met and got married before his first day of class.
I’m so grateful for the way his mission prepared him to be a husband and father. Amos’s mission also directed his carreer path. One of his mission companions had bipolar disorder. It frustrated Amos at first then fascinated him and led him into the field of psychology.
Our children are planning and saving now for their own missions. These cousins are great examples for them. The letter writing has been going on for several hours now and it is so fun to watch. They are using Google Translate to add a little part of their letters in each cousin’s mission language.
We just got a visit from the Sister missionaries serving in our ward. One is from Australia and the other is from Maryland. They need my help with a special project tonight so I need to go prepare. I’ll leave you with my kids’ favorite missionary video.