Intensive Care Unit

I was able to be with Amos over night and it was a special time for us. He was very sweet to me despite his pain and discomfort.

He didn’t have any terrible issues until early this morning when they said they were going to give him his pain pills by mouth rather than through the vein as they had done all night. He threw up and may have aspirated. Now his lung issues have become more of a problem than his liver issues.

His billiruben dropped again last night which is a good sign that his liver is making a comeback, but the lung and oxygen issues got him transferred to a new floor and now I just heard that they are transferring him again. Now he will be in the ICU and they will do the lung and abdomen draining procedures there at his bedside around 7pm.

Please pray for his procedures to go well. He is still fighting with everything he’s got. He really wants to pull that oxygen mask off.

The Johnstone clan showed up today and we are so glad. Amos hasn’t been too responsive today but when he woke up to Casey’s face he said “holy crap!”

Tracy’s kids also drove all night to be here today and it is fun to see them. Tracy is such a calming influence on everyone.

Dean is still doing an amazing job keeping his boy going. He also helped me last night when Porter got lost driving around and ran out of phone battery. He finally asked directions after about an hour and found his way.

Our ward continues to bring meals and cards and love and support. The stake president asked us to have a special fast for Amos tomorrow and I look forward to the needed blessings that will come from that.

Evie Clair is getting ready for the big show and I’m so excited for her. She had to catch up on some “on set” school today. I can’t show any of the exciting photos like sets or wardrobe so a school picture with Darci and Merrick will have to do. It looks like they got photobombed by Miss Blakely.

More Than Conquerors

Yesterday was pretty awful for Amos. His oxygen levels were too low.  His heart rate was too high. His pain was out of control and he was vomiting uncontrollably for over an hour in the night.

I got here this morning and everything seems much better. Thank you to his sister Tracy for taking the hard shift and helping him pull out of it. All of his numbers have improved including his billiruben levels. 

He has had a steady flow of visitors including a cousin who came all the way from Hawaii, friends from Idaho, family from Texas, friends from Gilbert High, our new bishop and our stake president. Not to mention his sister and his dad from out of town.

Most of his day has been just with me. He didn’t talk much but when he did it was very coherent and somewhat witty. You can tell his mind is still here with us and I know he heard the music I was playing all day because when I played Sweet Caroline he did the “Bah, bah, bah!” We listened to the entire Lamb of God cantata by Rob Gardner this morning and it brought amazing peace. An ending line has stuck in my mind all day, “Who shall separate us from the love of Christ? Shall tribulation or distress…? Nay, in all these things we are more than conquerors through Him that loved us!”

Amos loves the Savior and believes strongly that he will be healed from this affliction because he still has more to do on this earth. If it were God’s will for him to pass to the other side, he would accept that mission as well.

Doctors were prepping for procedures today but said as long as his numbers stay this good, they will hold off until Monday to drain the fluid in both the lungs and the abdomen.

Hope Number

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.

 

Example of a Man

My kids were able to visit daddy tonight and Porter posted this picture with the comment “I could never ask for a better example of how to be a man.” He has always had so much respect for his loving and wise father. I hope it wasn’t too difficult seeing him in this condition.

His billiruben number increased from 7 to 9 overnight and anything over 5 is dangerous. We held off the TPN for two nights to try to give the liver a break but he will go back on tonight to get his strength back.

He was not able to lay flat for the scan they needed to do today. He said trying to lay flat felt like an elephant was stepping on him. To avoid torturing him further, they decided to do an ultrasound instead. I’m not sure what they are looking for but just so grateful that they are still looking and not giving up on him. They have been wonderful in his care. Amos’s dad has been really impressed with the hospital’s excellent care and said we should get some results on the ultrasound tomorrow.

We are anxiously waiting. I got to talk to my sweetheart today and I’m really missing him. I’ve had some anxiety for him today but our faith is holding strong of a miracle in the works.

 

Touch and Go

Thank you for the many, many prayers. Your concern for our family is incredible. I believe there is strength in numbers and there are so many faithful people in our lives.

Amos had a painful night and is in pain again now. His brother, Tom, stayed with him at the hospital. They recently took Amos off the pain pump so getting meds right was a struggle. Tom went back home today. He has been such a great help for us and I know Amos loves his brother.

The hospital is pushing for Amos to be released to a hospice facility which we have decided is not an option for us. Our wonderful home care company, Aegis, stepped in and will take care of him when he is able to transfer home. Thank you Ben and Margene.

There was a moment today when I was on the phone with Amos and Dr. Kundranda. We were talking about TPN then the doctor seemed to have a thought about something else. He said he was going to check some scans with the help of Dr. Lanauze and get back to us.  We love Dr. Lanauze and hope they will come up with a brilliant plan together.

Amos’s liver tests are not showing improvement yet so he decided to try another night without the TPN even though he really needs nutrition.

They took the catheter out of his stomach today since no more fluid is coming from that section. Scans showed no fluid on his lungs so let’s end with that bit of good news.

One of the producers for America’s Got Talent went through cancer herself. She is now healthy and I sense such a depth in her soul. She is always  concerned about Amos as is everyone here. She talked to me today about how important it is to stay in the light because the pain and darkness of cancer can take over if you let it.

Pray for a Miracle

I was in the hospital room this morning when the doctor came in. I have felt strongly for a few days that we need to get Amos off the TPN. I asked the doctor directly if a feeding tube would be easier on the liver than the TPN. He said yes. He agreed to change him to the feeding tube and take him off the antibiotics since those are hard on the liver also.

I got on a plane with a little comfort that we would be giving his overworked liver a break tonight.

Phoebe, Evie, Blakely and I arrived in Hollywood and ran into some friends.

We came back to a phone call from Amos’s dad. He had the doctor with him who wanted to talk to me. He said they tried the feeding tube but he was too sensitive to it and they had to take it out. He said the other doctors said there is really nothing they can do for the liver at this point anyway so they decided to put him back on the TPN.

As you can imagine, that didn’t go over well with me. Thankfully he was reasonable and understood my point that if they are giving up hope anyway, there is no reason we shouldn’t go with the hypothesis that his liver is overworked and needs a break rather than the hopeless view that his liver is failing because of the cancer.

He agreed that we have nothing to lose and he also agreed that from now on only people who still have hope in survival for Amos should be making decisions for his care.

I spoke to Amos on the phone to ask him how he felt about all this. He was worried about the increased pain of digesting food but agreed that it needed to be done. My heart is with my best friend right now and I’m grateful for those caring for him while I am away. I love you Amos.

Amos will be off TPN and antibiotics tonight and they will test his liver in the morning to see if there is any sign of improvement.

Please pray with me for a miracle tonight.

Bishop Released

 

Today we experienced the most incredible sacrament meeting. It was unconventional but the surprises didn’t seem to hinder the spirit.  We had a lot of family and friends visiting. I’m sure the ward was nervous as they saw the stake presidency and so many extra people attending our ward.  Amos received his release as bishop. The words and spirit and feelings were overwhelming in a hundred different ways, but I knew it was right.

President Ray told us that he woke up at 3am with a thought to find a way for bishop to be able to speak in our meeting without physically being there. He informed us just before it happened that Amos would be calling into the meeting on a cell phone from the hospital. President Ray wasn’t sure if this was appropriate but he felt it was the only way he knew to make it happen on short order.  Amos came on the line with a strength in his voice I haven’t heard for many days. President Ray asked him to address his congregation. He spoke of his testimony of the Savior and shared his love for our ward and the many angels who had held him up during his time as bishop.  I know it was difficult for him to be released.  He loved being bishop and didn’t wan’t his time in that calling to be cut short by his illness. He wanted to continue to serve the members of our ward. When he was made aware of the release I knew he loved God more than he loved being bishop because he accepted the Father’s will. President Ray told us that releasing a bishop is not a decision he is allowed to make but that the First Presidency prayerfully considered his situation and felt it was best to give him this time without the added pressures of leadership.

Amos’s first counselor, Brother Elwood, was conducting today and announced that President Ray was presiding and that he would be turning the meeting over to him. President Ray never reads or prepares written talks but always speaks from his heart and mind through his knowledge and experience and with help from the Holy Ghost. After saying goodbye to Amos he addressed the ward.  He said,

“Those who are engaged in His work…as we are obedient to the best of our ability, the Lord has promised this… ‘I will go before your face. I will be on your right hand; I will be on your left. My spirit will dwell in your heart and mine angels will be round about to lift you up.’ I bear testimony that has been the case for your dear bishop. I have seen it. You have seen it. You have exemplified the pure love of Christ in this ward.”

The Maloy family invited more tears when they sang “My Heavenly Father Loves me.” It was so touching to see teenagers attempting to sing while crying out of their love for their bishop and their Heavenly Father.

I can’t remember what I said but it was mostly blubbering. Thankfully President Ray was inspired to ask Amos’s big brother, Tom, to come to the stand and share a few words also. Tom was also a bishop and is now serving in his Stake Presidency in Washington. He shared,

“As I sat in the congregation I wrestled with the spirit about an experience I had recently with my brother that I really did not want to share because it was way too personal and I lost that wrestle.” He told about helping Amos get back to bed when he started to fall. Tom caught him and said, “Just lean up against me. I got you. You’re not gonna fall.” He said that for a moment the Savior let him see through His eyes and understand His atonement better; that He is our brother and we just have to lean on him and we won’t fall.

Amos’s first counselor was then called to be the new bishop. Brother Elwood said “Over the course of the last year, I have watched great miracles that now extend beyond our ward and to the world because of the challenge that they are facing.”  He invited the ward to participate in those continued miracles. He said that last week as he sat and looked at the congregation he really could not identify anyone who had not had a miracle or tender mercy because of Bishop Abplanalp.

Later, Brother Elwood came to bring Amos the sacrament again. It was such a moving experience and we were so glad Joey could come too. He loves bishop so much for helping him through his personal struggles and he bravely came into a room full of people to tell him how thankful he was. Amos reminded him that it is the Savior who took away his pain and changed his life, not the bishop. Several of our family members also shared their testimonies and at least one I know Amos will not forget any time soon. He loves his family so much.

Bishop Elwood had so much family in town as he was being called as bishop and it was amazing of him to take time away from them to make that trip. His love for Amos is stronger than anyone I know. He then came back to the hospital later tonight with all the other bishops in our stake who wanted to visit Amos together.

When we learned the bishops would be visiting last night our friend Trudy Tracy got her cousin to come give him a shave and a haircut. 

Evan helped with the shave. Last night was also my Cinematic Pop concert and I was heartbroken that I wasn’t able to sing with them. This will be the first time I have missed a performance with those dear friends in 10 years. I heard from my dad and some friends that Rob Gardner dedicated a song to me and Amos and said a few kind words about us. I thought that was very special and I felt loved.

We enjoyed some comfort food today. Trudy and Lex Tracy are friends who drove all the way from Utah to comfort us and make us the most delicious meal today including some mashed potatoes and gravy, roast and asparagus.  Sometimes I really wish cooking was my talent.  She even taught Ruthie how to make Texas sheet cake and was so sweet with my little girls.

We also had a visit from a family we didn’t know who had lost their father to cancer a few years ago. They hold a ball game every year to raise money for a family who is going through a cancer battle. They found us. Anyone who visits us usually gets a song from Evie. They sobbed as they sat and listened to her sing. It was so touching to know how she can help others feel things through her music.

I have felt loved by friends and family and members of our church and many, many strangers, but mostly I have felt love from my Savior during these hard days and I’m grateful to be reminded by Tom that when we are in His arms we can never fall.

According to His Will

Tom took a turn with Amos at the hospital and said it was a hard night. Pain and vomiting and continued swelling of the legs made for a difficult start to the day but he’s doing much better now. I got to spend some time with my kids last night before I made my way back to the hospital to see my handsome husband today.

Last night Evie did a special performance for a big church group of 8,9 and 10 year old girls. I wanted to be with Amos so I sent my kids on their own. I got some wonderful messages from people who attended the event.

“You should be so proud of your girls! They show such love and kindness towards each other and Evie did an amazing job, not just performing, but sharing her testimony. It was wonderful to see them. We continue to keep you all in our prayers.” 💚 – Twila Ficklin

These are the things I love to hear more so than how talented they are.

Amos’s dad, Evan, is now here which makes 3 dads including mine. He’s blessed to have so much support. We also still have his brother Tom here and even his former babysitter Trudy Tracy who came a long way to see him.

Amos’s legs about doubled in size today again from swelling. I’ve never seen anything like this in my life. They felt so tight and I began to really worry. Tom and Dean got him up for a short walk down the hall and it really seemed to help.

He also has fluid in his lungs so he probably won’t be able to leave Monday as planned but perhaps Tuesday.

With all of his struggles it’s easy for me to worry. Heavenly Father seems to know just when I need a little help as I came across this scripture today.

“Words of Mormon 1:7 And I do this for a wise purpose; for thus it whispereth me, according to the workings of the Spirit of the Lord which is in me. And now, I do not know all things; but the Lord knoweth all things which are to come; wherefore, he worketh in me to do according to his will.”

Game Day


Amos’s friends stopped by to tell him it’s game day at Gilbert High. Looking back on every Friday night this time of year for the past 10 years, Amos has always longed to be at those Gilbert High football games. I know he’d much rather be there than in the hospital.

Evie Clair had a fun day back at school. They were so excited to see her make it to the Semi-Finals and are cheering her on through the end. I believe NBC is replaying her episode right now if you want to catch it. Her friends organized and encouraged people to vote and even made a few banners to congratulate her.

Amos started the day well and slept really well last night. They were excited that he hardly pushed his pain pump at all in the night. He woke up this morning and ordered breakfast. I stayed the night with him and was freezing because he needs it cool. His parents and brother came early and planed to help him take a walk to the end of the hall.

He made it on the walk but wasn’t able to keep his breakfast down. 

We knew it was because he was filling up with fluid again so we campaigned to get them to drain him. When they tried, only a small amount of fluid came out. They learned that he has several other pockets of fluid in his abdomen that can’t be reached through the existing catheter so they pierced his abdomen in 2 other places to try to release the pressure build up.

The main issue today is that the low functioning liver is causing not only the extreme swelling on the legs but many other issues. The answer may be to get him off the TPN and get him eating. I learned today that the TPN is hard on the liver. If we can get him to keep food down so his nutrition doesn’t suffer and cause more fluid in the abdomen, we can get him off the TPN and get his liver function back to keep the fluid out of his legs.

We hope to find the right balance and get him out of here and back home by Monday. We decide against the rehabilitation center because they may not be able to deal with his medical issues adequately. He feels good about being at home and we have lots of family members to help as Evie and I will be heading back to LA in the next couple days.

Dr. K says we can talk about clinical trials as soon as we successfully get Amos off the TPN. I believe the TPN saved his life but it was never meant to be a long term solution.

Char said she would break him out of here to go to the game if he wanted. We can always count on her for some excitement.

 

Beautiful Reunion

We sent my kids off with Ken and parted with a couple of my sisters before we had a music consult for Evie’s next performance. We then headed to the airport where Evie was stopped by several people who recognized her from the show.

We made it back to Arizona for a beautiful reunion with Amos bringing our love to him from the entire staff of America’s Got Talent. We were both so happy to see him after 10 days away.

Dean,Phoebe,Tom and Sandi have taken such good care of him today and I thank them. I’m so happy to have some time alone with my sweetheart tonight. He requested that I sing to him and it put him right to sleep so now I have a chance to write the blog.

I found his condition to be similar to when I left except that now his legs have swollen up to about double their size. They said the liver is responsible for managing the water passing through cells and it isn’t keeping up right now. The doctors are working on some solutions for the swelling among other things. Amos is trying to get off the pain pump. They were doing a procedure to drain his lungs yesterday during the live results so he had to watch it a little later. His reaction video has gotten around today. It was so tender.

They aren’t willing to release him to go home, but wanted to send him to hospice. Thankfully his oncologist came in this morning and told them that he isn’t ready to give up so hospice isn’t an option. They talked about a rehabilitation facility as one possible solution for extended preparation to get ready for more treatment.

This battle looks like it is going to be extended and I think he is up for it. I hope my heart is as strong as his. I knew there was something special about him when we met 20 years ago and I have been privileged to see the magnitude of his character. I have learned so much from him. I sent him a text on our anniversary that said something about how the past 20 years have been the best of my life. His response was about how the next 20 years together would be even better.

We don’t know when Evie has to be back in LA but for now we will savor the time we have together. My dad is taking good care of my kids and I’m thankful for him.

The nurse is now here to wake him up for vitals so I’d better go.  Love you all.