Getting better

Ammon decided he did not want to be here at the hospital very long. The poor kid was trying to roll over, grab the hose off the bipap, crying and shaking his head back and forth. They finally had to sedatate him on Tuesday night. I guess that's just what he needed though, after sleeping for 12 or more hours, he woke up Wendnesday morning like he was just fine. They took the bipap off for a trial, put it back on, took it back off, and kept it off. He received a blood transfusion yesterday because his hematicrit was dropping and I mentioned he looked very pale. Other than an occasional cough, he seems back to normal. He was tearing up paper and watching football bowl games with Dad today. It was so nice to see him smile when I came back tonight. I felt bad having to put the bipap back on and telling him to go to sleep when he was so happy and excited to se me.

There have been nights in the past where Ammon has had some rough days and all of a sudden he just seems happy, especially if Brian has been gone a lot, where we will let Ammon stay up and play with Brian until he is totally worn out. I am grateful we were able to catch his cold before it got worse. I think we will be going home first thing (which means 3 in the afternoon) tomorrow morning. It was nice to reunite with nurses and doctors that saved his life a few months ago, but we will try to stay away from here in the future. We will be quarantining ourselves for a while...especially Brynn, she's the one who got us all sick. She's doing better too. She just had a runny nose that turned into coughing, it really didn't seem that bad. It's being on the chemo that just makes everything ten times worse for Ammon.

Christmas Happenings...

We had a wonderful Christmas! Coleson and I went to church to enjoy Christmas musical numbers and stories. Meanwhile Brian stayed home with Ammon and Brynn, who was so excited to go to church with her new doll that had a matching Christmas dress. Her nose began to run too much so she stayed home. Coleson was promised gifts would not be opened until he got home. I'm glad he enjoys Christmas music. He got to attend the Mormon Tabernacle choir performance last week and enjoyed it immensely. He has been going to school early for the last few weeks to sing Christmas carols. For the Cheney family Christmas Eve party he performed Nottin' for Christmas, his new fav.

Everday I have school time with Brynn and Ammon. Brynn has been learning the correct words for Jingle Bells, while Ammon shakes bells. It takes humility on her part to let her Mom tell her the right words. After one day of showing her how to spread her fingers out to play one note at a time on the piano and start with middle c, she doesn't need my help anymore. "Brynn do you want me to show you how to play Jingle Bells?" "No, I know, watch Mom," as she sings Jingle Bells proudly and plays whatever notes on the piano. After singing the chorus 4 times in a row "See Mom, I know how to do it." I just smile and say good job. The whole car ride down for the party she was singing Jingle Bells and then when it came to perform, she bravely marched up to the piano, struck one note, and was hit with stage fright. Maybe next time. I never know when Brynn will be hit by shyness, but it's usually just at the right times to make awkward moments.

Brynn got a big girl princess bed for Christmas. I think I was just as excited as she was. She's been crawling into bed with us for the last week or two, so my count down to Christmas started being count down 'till brynn gets her new bed so maybe she will sleep through the night again.' Her babies got a cradle too, so everyone slept good last night. That is except Ammon. He started crying around midnight and so I started sleeping next to him until he calmed down. Unfortunately, his condition got worse and worse... nasal and throat congestion, super high heart rate, labored breathing. At noon he started getting a fever and then we knew it was time to take him in. So Monday night I am hear with him at the hospital. Hopefully not long term. All his x-rays and blood tests have come back normal. So it's probably a cold virus making him all stuffy and unable to clear himself. He was doing so good until chemo on last Thursday. He just hasn't felt good since, but he was ok until today. It's never fun to come to the hospital and hear, "Oh there's Ammon." I don't like the fact that I run into nurses and doctors I know in the hall. I am still proud to have the title of Ammon's mom, though.

Update..We were moved to the PICU early Tuesday morning because he just could not maintain his oxygen saturation level. He has Human metapneumovirus, like RSV, so they expect it to spike on the fourth day before he gets better. With a virus you just have to let it run it's course, but this way we can have a little more pain medication and suctioning to make it more tolerable. We should be able to go home by the end of the week as long as his blood counts stay up.

Anyway, we've had a great Christmas and I hope all of you had a great Christmas too....and Happy New Year!

Magical...

Magical! That is pretty much the best way to summarize everything going on. Let me start this post by sharing something with you (but if you're not in the reading mood, please go straight to the videos below). At times we feel compelled to speak on Ammon's behalf in a very literal sense. We are Ammon's voice and words at times. We try so hard to convey verbally the things that Ammon is wanting to share through his feelings, movements, and expressions. Many nights when it's Ammon's turn to say family prayers, someone in our family will be his voice, as if it were Ammon speaking, and we try to say the words that he wants to express (at times this is a daunting and humbling endeavor, but to hear Brynn be Ammon's voice is unforgettable). Sometimes in these prayers we sense that Ammon is praying specifically for a family member or friend, is praying for how glad he is to be part of our family and have the friends he has, or is simply praying for a good nights rest. But being Ammon's voice is only one of the many ways that we sometimes feel compelled to speak the words on his behalf.

Just like all of us, Ammon has specific missions that he has been sent to accomplish. In being Ammon's voice at times, we've learned that one of those missions is to bring joy and inspiration into the lives of his family, friends, and even strangers. We've realized recently that Ammon knows this is one of his missions and gifts, and he experiences great joy in return as he sees this particular mission being fulfilled. Several recent examples in this regard, among the many. Santa coming to our house this last Sunday was the result of one of Ammon's newest friends that only met him the day before. She had never heard about or even really knew Ammon until Saturday, yet in the short time she was near him and was able to hold him in her arms, Ammon conveyed an eternal sense of happiness and joy, without even saying a word. So much so that overnight she was inspired to return to our home again in the morning to be with Ammon, hold him tight, and organize a visit from the real Santa.

On Monday our family had the opportunity to go on the annual hay ride put on by our friends and neighbors. The hay ride goes around the neighborhood, with Christmas songs ringing, and about 20 happy riders for each trip. On each of the three trips our friends graciously stopped the hay ride in front of our house so Ammon could wave Hi from the front window. While we were warming ourselves by the fire and eating treats after the ride, many people expressed how much joy they felt just through Ammon's presence at the window. I was particularly happy this night because I also got to see my little friend Sophie (Sophie is a beautiful little girl with special needs that radiates many of the same feelings that Ammon does).

We still can't say enough about all our secret Santas, and all of our friends and family that continue to selflessly serve and love Ammon and our family. Through all this service, Ammon is realizing that one his missions is being fulfilled on a daily basis and this has recently brought him so much joy. Over the past few days Ammon can hardly contain himself at times, and the joy he's feeling from each of you is being shown in his laughs and smiles. In fact, we haven't seen Ammon this happy or laugh this hard in a long time, at least since before his diagnosis. So without further reading required, please enjoy laughing with Ammon (in one of these he might look like he's crying, but he's actually laughing so hard he almost can't breathe).

There is magic this time of year!

We feel truly blessed...Santa came early to our house. First his elves have been busy cleaning our house, organizing Legos, rocking Ammon, and they even dropped off some giant boxes with tons of presents for everyone in the family.



We have greatly appreciated them and have treasured them by opening one a day as a countdown to Christmas.


Then Santa came to our house today...I guess he knew that Ammon has not been able to sit on his lap and if he just came on Christmas Eve, we would not get to actually see him.


He brought the softest blankets for all three kids and Brynn got to sit on his "comfy" lap with Ammon. Ammon couldn't stop touching his beard. Brynn was jumping for joy. She didn't think that Santa had ever been to our house because she had never seen him. She would even tell me afterward when others asked if she was excited for Santa to come, that he doesn't come to our house. She can tell everyone now that she has seen him and he did come to our house. What special gifts of service have been given to us this week. How did they know a mom wanted to buy her daughter a nightgown and hasn't been able to. How did they know our son needed more socks(again) How did they know Ammon just needed someone else to rock him. Tears of overwhelming gratitude continue to be there. Thank you Thank you to our secret Santa helpers!



P.S.Our friend Spencer got a new heart on Friday and continues to do great, he might go home by the end of the year!

There's Someone Special 'In There'

We've recently had friends remark that they did not realize everything that Ammon could do. Some didn't know he could laugh, that he could interact, or that he could really even smile. They've expressed their gratitude for the blog over the past two months, because they have come to realize everything wonderful that Ammon could do, particularly with a little time and love (which you'll remember are Ammon's favorite things). Most have already felt Ammon's strong spirit and the joy he radiates and inspires, but there is so much more that everyone has been learning about him. Most people don't say these exact words, but I know are conveying that in some regards they've come to realize that there is someone 'in there' and they've come to know him better.

In some regards, at times it appears that Ammon has the same attitude and characteristics of the reclusive 16 year old teenager. You carry on one sided conversations with the teenager, you organize engaging and fun activities with the unresponsive headphone wearing teenager, you sometimes even yell really loud at them how much you care and worry about them only to receive a blank expression in return. Then one day that previously unresponsive teenager, that you didn't think was listening, or cared, or even loved you, will quite suddenly put their arms around you, hold you real tight, and emotionally whisper, "I love you. Thank you for talking to me, thank you for the activities, thank you for telling me so strongly how much you loved me. Thank you for always being there for me." Turns out they were there all along, they were listening, they were watching, and finally something clicked and they recognized the time and love you had always given them.

If you really want to get to know Ammon, sometimes it requires an investment of time, sometimes over hours, days, and weeks. Most people are wanting and willing to truly know Ammon, but the realities of life and the shortness of time does not allow it. In our fast paced world, when we say Hi we expect to hear an immediate Hi in return, or at least some type of recognition. If we don't receive that immediate response, we naturally wonder if anyone was listening, if they care, or even if someone is 'in there.' And due to those real world constraints, sometimes Ammon's cerebral palsy and seizures simply don't give him the opportunity to react fast enough.

Trust me when I say, that contrary to the reclusive teenager, Ammon wants to say an immediate enthusiastic hello when someone says hi to him, but sometimes his tongue won't move the way he is pleading it to and his muscles won't contract and respond in the way they need to, to even elicit a sound, at least not immediately. Sometimes his mind is shouting, "HELLO! Please hear me, HELLO!" But all that comes out, and thats usually after 20 seconds or more of true exertion and effort, is something similar to a sigh or a breath. Sometimes, I feel, that Ammon has learned through repeated attempts that his muscles won't listen to him and his nerves won't fire, and by the time they might listen to him, what he was trying to get them to do has already passed, so why even try. Some days, when the seizures are under control and the stars are aligning right between Ammon's mind and his body and muscles, if you are patient, and if you have a little extra time on your hands, you will see the sweet inspiring boy that is in there. You will see the young boy that shouts for joy when a brother or sister stops to play with him or sing him a song, when a mother tells him how happy he makes her and how handsome he looks today, or when a father simply walks in the door. You will see how much joy he experiences at the opportunity to walk, with legs marching and pumping uncontrollably. You will see how much he loves to make and wear a crown in Primary, be included in a fun song with actions, and included in circle time at school. You will see how much he really loves you, that he recognizes and knows you, and is grateful for your friendship and your kindness.

If you are patient, and have a little extra time, you will see. You will see the outward and physical expressions of joy, service, and gratitude from Ammon, similar to what you feel by just being near him. And if you're like us, once you see, you hold those moments really close, you write them down, and you never forget. And everything you do from that point forward is to constantly involve him, pray for him, give him experiences, and shower him in love, because you never know when the stars in Ammon's mind and body are going to align again and the sweet inspiring boy inside will be able to physically respond to your hello with a beaming smile and a shout for joy.

Ammon Update

Ammon continues to do well at home. Every time he goes to bed he gets a half smile and looks around, like this is my bed. I was nervous this week, with a new oral chemo medication, that he might not do so good, but he seemed pretty normal. He still has nights where he wakes up and cries, so I usually end up lying next to him and rubbing his arm or stomach. We think either the bipap or the chemo is causing a lot of gas in his stomach, which we will "vent"-open up his gtube to let air escape-quite frequently. Yesterday, the kids had him smiling and yelling on the couch while they rubbed his head and said "fuzzy head". He is finally starting to grab more, move his legs and do a half body roll-more like a twist. I was excited when I noticed today, while we played on the floor that he was doing this half twist until I was reminded how bad that would be for him to roll over with all his tubes hanging out. That is why we never got a GJ tube in the first place, I knew he would roll around too much. Even though it still makes me sad that he can't move a lot or bear weight, I guess it has been good for his recovery to be still.

We were able to get rid of his 2am med(hooray), his phosphorus levels went back to normal. Tomorrow is another Chemo appointment and on Thursday I get to take him to get his new gait trainer. I started the process at the beginning of the summer to get this new walker. He outgrew the one we had. It's a process to make appointments, have the insurance approve, get measured, custom order it, and then wait for it to be made and then make another appointment to pick it up and adjust it. When they called me a few weeks ago saying it was finally ready, I tried not to cry on the phone to tell them we were excited, we had been waiting almost 8 months, but he has changed, he can't stand or walk anymore. It's not a waste, it will work as a stander and help him slowly regain his strength and hopefully by the time the snow melts in the spring, he will be out cruising the sidewalks again.

Happy Birthday Coleson!

This is from Nov. 14th...Coleson turned 9! He's growing too fast. My dear dad came and sat with Ammon at the hospital while I joined the family to celebrate.

Coleson and his cousins helped push Brynn all the way up there. Brynn loved it, I was ready to jump in the first time she attempted it, but the boys were there to protect her.

Coleson is such a good big brother and has been a good sport about his parents being gone all the time(maybe a little to excited to not have parents around).

"Seriously Mom, I'm too old to take pictures on the first day of school"

He has been busy with school this year, taking on extra projects in a special program. He has always been very out going...even making up for my slack sometimes..but it seems this year, even with going to a new school, he has learned to make other kids laugh, even so much that he occasionally gets to be the "voice of Lakeside" and make announcements over the intercom. They had an economics fair where he made a product(thank you Amanda,Seth, and Magga) and sold it. He made Bottle Cap Angry Bird Tic Tac Toe and BYU vs. Utah. He was so excited to sell stuff. He sold out right before I came to his school. It was fun to see all the kids so excited to sell their creations, I wish I could have bought something from everyone..I have a hard time ever passing a lemonade stand without buying something. There were only a few minutes left of the day so the teachers announced that the kids could finish by naming their own price..like black friday..the gym errupted with yelling..one ticket, buy one get one free.. I think our kids have seen a lot of adds..it was hilarious.



Coleson had a good soccer season, even playing goalie sometimes. He is now learning to play indoor.

Coleson loves to read and read and read. Some of his recent books are A to Z mysteries, Harry Potter Prisoner of Azkaban, and Warriors. He is still a Lego maniac and is good at making his own creations. I can't say enough of how I love my Coleson!


Coleson has learned, through all of Ammon's experiences, that one way he can get Ammon to respond to him is by taking the time to read to him. Ammon loves to be read to.

Update On Spencer...

We'll have another Ammon update here shortly, there are many happenings over the past week to share. You might remember this post from a month and a half ago concerning a young boy named Spencer. Through prayers and miracles, Spencer made it back on the heart transplant registry and hope was restored. He is now still waiting for a heart to become available. His parents, Nancy and Matt, became our friends while we were all in the PICU together at Primary's, and they continue to be there with Spencer until a heart is found. Whether it's heart disease, cancer, or dozens of other unique and critical child illnesses, the similarities across each of them is the bond of faith, hope, love, and miracles. Transplants are an interesting miracle to pray for, and require remembering not only Spencer and his family, but also the family of the heart donor. Spencer needs another miracle, and he needs our continued faith and prayers in asking for one. As you continue to walk with and pray for Ammon, we invite you to please remember our young friend Spencer as well.

The Bell...

I love Christmas time. I love the stories of Christmas and charity, and recently I’ve thought a lot about the symbol and sounds of bells during this time of year. In the movie, “A Wonderful Life”, George Bailey doesn’t realize all the good he has done in his life, all the dozens and even hundreds of people that are eternally better for knowing him and being served by him. George has an angel assigned to him named Clarence, that lovingly serves him and helps him to realize the great success and service of his life. Clarence hadn’t earned his wings yet, which in this angel’s world are given as a symbol of recognition for blessing those that he has been given charge over. At the end of the movie, a bell on the Christmas tree rings, acknowledging that Clarence had successfully fulfilled his responsibilities and his opportunities.

In the movie “The Polar Express” the bell symbolizes a child’s ability to believe in the true meaning of Christmas and all its wondrous stories. You can only hear the most beautiful peals and rings of the bell if you truly believe, there is no other way. For those that choose not to believe, the bell rings silent and is considered broken and worthless. To believe and to allow the bell’s joyous sound to enter your heart, allows for miracles to occur, again and again.

There is a bell at Primary Children’s Hospital, located on the fourth floor in the children’s cancer wing. It’s a small bell with a loud clear ring that hangs on a central wall in a revered spot. This bell serves a special and unique purpose, and symbolizes triumph over one of the most difficult journeys a child is asked to bravely traverse. We heard the bell for the first time at the beginning of October when Ammon was originally diagnosed. We were sitting in Ammon’s hospital room and his nurse, Andi, had to excuse herself because it was time to ring the bell. “What’s the bell,” we asked, and she told us she would tell us all about it when she came back. Curiosity getting the best of us we listened intently at the door of Ammon’s room. It was clear that everyone that worked in the cancer wing was gathering and there started to be quite the celebratory commotion rising. We heard cheering, followed by singing, followed by clapping. Then for just a brief moment, everything got really quiet. Suddenly, in that moment of silence, we heard the sound of a bell being rung vigorously, and the cheering erupted to new volumes. Summer, Ammon, and I knew we had just listened to something special, something miraculous.

A while later, Andi returned to Ammon’s room with a smile and a cookie shaped like a ginger bread man that she gave to us. The cookie was missing a leg. Andi then proceeded to tell us that the bell is only rung by very strong and special children and youth. Once a child completes their last chemo treatment they are awarded the privilege of gathering with their family and friends, including all of their new friends at the hospital, and ringing the bell. The young man that rang the bell this day, lost his leg to cancer, but he still won the fight. And according to Andi, he won it with a smile.

With celebratory cheers and song, we’ve heard the bell rung a couple of times since then, and each time it brings a joyous and emotional response. Whenever I’ve heard a bell so far this Christmas season, I always think of Ammon’s cancer journey and what he is enduring. For us, the sweet ringing of bells is a symbol of victory, of endurance, of joy, and of miracles. I believe in the sound of that bell on the fourth floor and all it symbolizes. I believe in the hope it conveys. I believe that Ammon will ring that bell someday. Until that day comes, I listen for the sound of bells, and I believe.

Thankful...

What a wonderful Thanksgiving! Ammon has been home with us for a week now, and based on his performance we expect this stay to continue. It has been a busy, joyful, tiring week, full of gratitude and work. Minus the IVs, we’ve set up shop pretty nicely here for Ammon, with all the familiar beeps and hums of various machines from his hospital rooms. We have a nebulizer for his Dinase treatments, constant oxygen during the day and a bipap machine at night, oxygen saturation and heart rate monitor, a continuous portable feeding tube, and the suction machine. We’ve had a lot of experience with most of these machines before in Ammon’s life so sometimes the biggest worry is just keeping the cords and tubes untangled and everything flowing smoothly. However, we’ve learned quite a bit regarding the continuous feeding pump and the suction machine, and only had a few head scratching moments on why food or medicine wasn’t moving as it should. Ammon’s machines are supported by several boxes of equipment and supplies, and of course his daily doses of medications. Summer set up a chart with nearly a dozen listings, showing what type of medicine needs to be administered, the quantity, and when, all through his tube. The chart shows medication being administered at various times throughout the day, including the dreaded 2 a.m. night shift. Though caring for Ammon is more than a full time endeavor, for more than one adult, it is so good to have him at home.

It’s important to daily look for, recognize, and then count your blessings, particularly when in the midst of life threatening trials. This is why Thanksgiving is such a great time of year. Over the past while I’ve been putting together a reminder list of things, people, and events that I am thankful for. In keeping with Summer’s loving advice to me, I’ll do my best to keep this posting to under a 3 or 4 minute read, so this is only a summary of my many ‘thankfuls’ (and hopefully you can read fast).

I’m thankful for the faith and knowledge of children. One day after church, 3-year old Brynn took my hand and said in a matter of fact voice, “Daddy, Ammon walk…” She then continued saying to a suddenly emotional and attentive Dad, “I hold his hand…but he walk, and he won’t fall.” Then, in some of her prayers since then she prays about Ammon walking. I don’t know if she heard something at church or if it was just a thought of her own, but either way Brynn knows that someday “Ammon walk, and he won’t fall.”

I’m thankful for forgiveness and understanding. One of the good things about being at the hospital is that all the doctors and nurses do the necessary, yet sometimes painful or discomforting medical procedures. They poke Ammon with the needles, they push on his sore tummy, they administer his poisonous chemo, and they suction out his nose and throat. In most instances we are standing with Ammon and holding his hand or rubbing his arm and telling him to hold on and it will pass quickly. Ammon always believes us, and the pain of the procedures always does pass eventually. At the hospital we are almost always the good guys. Now that we are home, the most painful and discomforting procedure that Ammon has to endure is the suctioning. Suctioning involves putting a small tube down Ammon’s throat or nose, sometimes as far as 10 or 12 inches, with the goal in mind to get him to cough and suction up all the junk and secretions. Usually, Summer or I will hold Ammon’s head while the other inserts the tube, and this is usually repeated 2 to 4 times per session. The first few times, Ammon would stare straight at me while crying and I could just see his eyes telling me, “Not you too Dad!” But I’ve seen over the past few days that he understands how this is helping, and how much his parents still love him. Ammon, again, has shown his wisdom and strength in successfully enduring the suctions and still loving his Mommy and Daddy just as much afterwards.

I’m thankful for laughter. It’s been so nice to hear a good joke or story over the past two months and just laugh uncontrollably. Coleson’s enthusiasm for life has been a particular source of joy and good smiles. Sometimes, Coleson has been down stairs watching a movie and we just hear random outbursts of pure laughter followed by something like, “That’s just great…Oh, that’s awesome!” You haven’t lived until you’ve had the chance to watch a funny movie with Coleson or play the Wii where he will jump up and down saying "Go, Go, Go!" Even just the chance to take a break and be with friends and neighbors for a few hours and play video games (something I’m able to do once every year or two) that I have absolutely no skill at, yet I’m able to elicit quite the smack talk. Honestly, not even the smack talk is that good, which is why it makes me laugh.

I’m thankful for family. That’s probably better said as I’m thankful that family is forever. My brother-in-law’s family has been at our home for the last week, and it has been a blessing having them here. They drove all the way down from Seattle with a very young family, with the primary goal in mind of serving Ammon. They represented another shift of the continuous round of love and charity that has surrounded Ammon and our family since his diagnosis. It has been relieving to have things be done, particularly those things that I didn’t even realize needed to be done. A fridge cleaned out, a cupboard organized, a meal prepared, outdoor Christmas lights put up, and the children sung to and tucked into bed. My parents have been wonderful in attending Coleson’s soccer games, bringing small presents for Brynn, and praying without ceasing on Ammon’s behalf. My brothers and their families have been equally generous in their outpouring of love, and their faith and prayers have been recognized on Ammon’s behalf. My other brother-in-law and his wife put on a much needed Thanksgiving feast that was as exquisite as any I can remember (the turkey was heaven, and the sweet potatoes somehow even better; seconds was still only the beginning). Laughing and sharing around the dinner table, with the best part being that Ammon was there with us sitting mostly content on Summer’s lap. It’s amazing how broad those you call family grows when going through something like this with Ammon. All of this love, faith, and charity for my young wonderful boy. It’s no wonder, that at least for me, I look forward to having such family around us forever.

Excitement and joy do not even describe it!

This week has flown by! The lack of posts has been due to nothing new and not a lot of sitting around. Ammon is healing and getting back to semi-normal, which meant more interaction and entertaining this week. He did get another hematocrit transfusion and the benadryl did not interact well. He was inconsolable for a little while. He has had night sweats and diaper redness, but all minor comparatively. He is getting chemo right now in the OR. It is a lumbar puncture which is done under sedation, but only takes about 10 minutes. After he is observed for a few hours then we should be on our way home!! I told the cleaning lady this morning she could wait until we left. I ran into a few PICU doctors and nurses yesterday and today and told them the good news. I keep spreading my gratitude around hoping that will ensure us going home....The doctor just cleared us to go home! We can't thank everyone enough for their prayers, thoughts, services, notes, child care, etc. to get us through. Hopefully we won't have another complication like this, seeing this is just the second month of our leukemia journey, but everyone has helped us and blessed us to survive! There are so many days and nights where I wish I could rock, sing and love Ammon's problems away and this time I think the overwhelming love and faith (with a lot of hospital care) worked!

Thoughts on Chemo...

I’ve been thinking about chemo lately. Chemo isn’t exactly what I thought it was before Ammon was diagnosed. In many regards, chemo refers to multiple treatments over varying time periods that are all designed to adequately arm Ammon in his cancer battle. Some of the chemo treatments fight a single solitary purpose in the cancer battle and are used just once, while others are administered repeatedly, even daily, and work together on the same strategic objective. Some are the tip of the attack, the probing and softening of the defenses, and some are simply manning the watch towers on areas that have already been won. Certain chemos are administered through Ammon’s port, others through his GJ tube, and others, like the lumbar poke, require sedation and insertion right into his back.

Chemo is a life saving poison. If this were a fairy tale, chemo would be the poison apple that causes you to fall into a forever sleep, but without said poison apple you would never meet your dream come true through an eternal kiss. The pain of the poison apple is what makes the happily ever after even a possibility. For example, a few days after Ammon’s diagnosis, he received a chemo treatment referred to as the PEG (in hindsight, an exceptionally bitter apple). The PEG is received only once in the overall chemo roadmap, but only once is all it took. The lifesaving aspects of the PEG also resulted in an emergency life flight, pancreatitis, and a sickening downward spiral of severe medical complications that necessitated over a month stay in the PICU followed by a week in the ICS. The PEG was a devastating poison for Ammon, and a lethal poison for Ammon’s cancer.

Sometimes, because I can’t see the chemo, I almost close my eyes and pretend it’s not there. I’ve been known to chuckle when Ammon needs a diaper change, particularly in the days after his chemo treatments, because I jokingly say his diaper is radioactive, or at least the contents therein (I know several Dads that would love to slide into a chemical protection suit before every diaper change). I usually do this because sometimes we all just need something to chuckle about; at times we just need a little bit of the best medicine, a laugh and a smile. But even as the nurses and I chuckle at the thought of another radioactive diaper, the nurses are pulling on gloves and putting on robes. Not just standard gloves to ensure the nurses don’t come in contact with germs that you can simply wash away, or vice versa in spreading harmful germs to Ammon. No, these gloves are the thick purple gloves that are designed to protect you from the poisonous aspects of the cure. The robes have the same protective characteristics. And pretty much anytime, any of the professionals working with Ammon need to be exposed to him for extended periods after his chemo treatments, whether through brushing his teeth, changing a diaper, or another caring procedure, they always dawn the thick purple gloves and the special robes. And when they are done they throw the protective materials in a container marked with a hazardous sign on it. Like I said, because I can’t see the chemo I almost pretend that it’s not there, and sometimes in what is probably a foolish showing of solidarity with Ammon, I’ll do the nurse a favor and grab the diaper and put it on the scale without wearing the special gloves. “See no gloves,” I think to myself, “Surely you are being overly cautious; surely, it is not that dangerous. Man up, and let’s just change a diaper!” But I’ve come to know these professionals, I know they love Ammon, and I know they are not foolish. I know they respect the power, the seriousness, and the residual effects of the cure.

I need to wear the gloves too, because to do otherwise is simply pretending that the poisonous cure I can’t see is not as difficult to endure as it really is. In some ways, this act of not putting on the gloves is selfishly minimizing the treatments that Ammon is required to endure. And I’ve realized that Ammon doesn’t need that kind of attitude from me, when what he really needs is my continuing faith, love, and prayers. Because over the last month in the PICU, I’ve witnessed how hot the burning fire of this cure might feel before it really becomes the cure. I also know that this chemo process, combined with faith, love, and prayers, will continue to shorten the path to reaching our happily ever after.

Moving day

Today we finally graduated from the PICU! Hooray, we are no longer in critical condition and one step closer to going home. We are now in ICS, the cancer treatment unit (affectionately referred to as "upstairs on the 4th floor"). We have our own room again and a lot less pokes and prods. Actually after we moved mid day Sunday, we really haven't been bothered except for respiratory treatments. One day as I was walking through the hospital, all sweaty from doing a morning run, on the way to the parent showers, I realized that I live here. I eat, sleep, exercise, shower, and work (to get Ammon better) here. I do feel like I am leaving all my new friends in the PICU. All the nurses and doctors have been great. One of our favorite nurses got to move upstairs with us and continue to take care of Ammon the rest of the day. We both felt like we were out of our comfort zone here in the ICS. Ammon and I stared at each other a lot. He really didn't feel like doing anything. The rest of the family came to visit us, as this is the last day that kids are allowed in to visit due to hospital restrictions. From here on out, Coleson and Brynn can only be with or say hi to Ammon over Skype whenever he is in the hospital. Brian apparently got Ammon to laugh while I was walking around with the kids. So not fair.

So far so good with his last regime of chemo from Friday. With the recent chemo treatment the plan is to watch him for a few more days and then hopefully figure out a plan to go home. He is still on the bipap at night, continuous feeds and a whole lot of medications, all of which we could possibly do at home. It's been a good day!

Moving Forward...

Over the past few days Ammon has continued to improve, which is wonderful. It is so great to walk into his hospital room and only see a continuous feed bag and water, no ivs, no medicine drips, just meds and flushes in the morning and night. Ammon has been having good days and then sleeping fairly well at night. His blood counts jumped back up last night, which means he has officially been cleared for his next round of chemo today. You’ve heard my thoughts too many times on this already, but this is just how it is. At the moment you are doing better, particularly after having been so critically ill, your reward is another round of life saving chemo. You keep being brave like Ammon and moving forward, because it is the only way to go. We are optimistic that Ammon will weather this round better, although we do expect to remain in the hospital indefinitely. In fact, Wednesday Ammon marked his fourth week in the PICU, and he’s made a lot of friends and received countless blessings along the way.

Below are some older pictures of Ammon smiling. This is what we are all looking forward to again.

Write Them Down...

I’ve been reminded repeatedly over the past month and a half of a talk I heard in conference several years ago. President Eyring shared the story of a time in his life when he was a very busy young father, and was arriving home late one night in the dark. As he was walking toward his front door, his father-in-law unintentionally surprised him. His father-in-law was walking very fast toward the backyard, dressed in work clothes, and carrying a load a pipes. He was building a system to pump water from a stream to President Eyring’s property. His father-in-law smiled, spoke softly, and then rushed past him into the darkness to continue with the work. He was performing an exceptional selfless service for the Eyring family, even late into the nighttime hours. As President Eyring was entering his home and thinking upon this service he heard in his mind (not in his own voice) these words, “I’m not giving you these experiences for yourself. Write them down.”

I’ve heard that same voice and that same phrase for years, and particularly since Ammon started this most recent journey. I feel selfish in many regards for not doing a better job of writing and then appropriately sharing many of these experiences. I’ve been particularly moved as many times recently I’ve come home from work or the hospital, and it is dark, and the children have already been hugged and tucked into bed, and my own father-in-law is sitting quietly on the couch doing some work. On many days when he is here, it means that his beautiful wife is back in California, and they are apart while serving our family. I’ve been surprised many times to come home and find everything already done. The laundry room painted, the freezer moved, and a dozen other items that I was supposed to get done months ago that are finally being completed. All of these experiences inspired by Ammon are truly not for myself, but I’m trying to do what has been asked of me and writing them down.

Here’s a few of the dozens of stories that I’ve written down. I do hesitate to share them in this way, because it feels like standing up at a party and acknowledging only a few where literally everyone in attendance deserves significant acknowledgment and praise for the service and prayers that have been performed. Every service and prayer is special, and a child's 15-second prayer is of equal merit and importance as the gathering of a dozen youth to clean our yard and mow our lawn. I do know, that in the eternities all the good will be known, and when compared to the things that we have written down the volumes of records will likely increase a hundred fold.

There have been numerous families that have been a significant comfort and source of faith since Ammon’s diagnosis, and in some instances several of these families have historically only been general acquaintances, kind of like those that you only wave hi to with a brief hello in a hallway. On one occasion, I was deeply touched and almost brought to tears when one extremely shy individual approached me. She called me by name (I didn’t even know she really knew who I was), and then proceeded to offer exemplary support and service to our family on Ammon’s behalf. As people learn about Ammon’s strength and experiences, he apparently makes it easier for people to overcome their own fears and weaknesses, and truly step outside of their comfort zones. On other occasions, right from the time of Ammon's diagnosis, so many good people have watched and loved Coleson and Brynn. On the nights surrounding Ammon's diagnosis this was particularly poignant for me to such a degree that I have struggled to write the right words in expressing the gratitude I felt. I struggled greatly on how to relay Ammon's diagnosis to Coleson and Brynn for the first time. As I went to pick them up on those nights I received great comfort in knowing they were in homes and with families that loved them. That alone, made an incredibly difficult task of telling them that their brother has cancer and what that means a little easier for a father to shoulder. I continue to be amazed daily as I witness so many tender mercies from the Lord.

Ammon’s nurses and doctors love him, and we are grateful they have those feelings. At times, we have found his nurses, both male and female, sitting next to Ammon and singing him songs or holding his hand. Ammon has an occupational therapist that comes to visit him daily now that his health has been improving, and they play specialized exercise and interaction games together. Today, near the end of Ammon’s therapy session the therapist was singing Paddy Cake and doing the motions and Ammon started to smile, and just melted the therapist’s heart.

The youth and children in our neighborhood, in our extended families, and from work have been especially thoughtful and prayerful on Ammon’s behalf. To hear their testimonies and eternal experiences concerning Ammon’s journey has been particularly touching and inspiring. The drawings, pictures, letters, and cards have been a repeated heart warming source of strength to us and to Ammon. Several very sweet young girls were apparently distraught over Ammon's diagnosis, and taking matter's into their own hands they canvassed the neighborhood sharing Ammon's story and securing donations on his behalf. Our family has been humbled immensely by the kindness of the act and the amount of funds our good neighbors donated. Another group of families ensured that fuel for our cars as we travel to be with Ammon would not be a concern. It’s so humbling and strengthening to hear parents share stories of their littlest children, who sometimes can hardly even talk, praying on Ammon’s behalf, with no encouragement or reminders needed. I hope you all treasure those special moments, by so many special children, as much as we do.

One day a close friend dropped by our house several grocery bags. When Summer first explained to me the delivery I naturally thought they were full of groceries, but instead it was full of paper plates, plastic cups, and picnic utensils. Apparently, while our friend was grocery shopping that day, she was thinking of Ammon and thought there would be less chores do if we could simply throw away our dishes after dinner instead of washing them.

A package arrived one day with a couple of CDs full of the sounds of soothing harps and other relaxing music. The gift of music was from a grandmother that had lost her own grandchild several years ago when the grandchild was less than a few months old. A note was attached that shared how much she loved and was inspired by Ammon, and that the music on the CDs were used to calm and comfort her own grandchild when she was experiencing her own difficult and inspiring journey here on Earth. We feel so much joy and humility in receiving such a tender gift, and are glad to share it with Ammon, while knowing that a loved grandchild in Heaven is always remembered and connected with Ammon in this special way.

The week after Ammon was diagnosed, two of Summer’s friends from the neighborhood stopped by our house and asked to borrow the keys to the Explorer. They relayed some story of needing a larger vehicle for some event and simply wanted to borrow the car for a few hours (despite one of these women having teenagers, they were not the best at creating a tall tale or even a remotely believable excuse). With a questioning smile from Summer that conveyed “what is really going on,” she handed over the keys. Several hours later the Explorer was returned, with the task accomplished. Upon investigating the vehicle we were greeted with an immaculate showroom interior. Everything had been vacuumed, all items picked up and put away, the windows cleaned, the dash scrubbed, and a basket full of travel goods, a journal, food items, and other necessities that have since been enjoyed on every car trip. They had even taken the thought to place a vanilla air freshner at the front of the vehicle and another way in the back. The car was perfect, the service was exceptional, and the love conveyed was immeasurable. Even a month later, each time as we open the doors to load the children in the car or for another solo trip to be with Ammon at the hospital, the warm vanilla smells envelope us. The Explorer, has maintained its illustrious shine when it has been in Summer's responsibility, but for the days that I've had it the shine has occasionally been diminished. At times, if you did not know the service that had been performed and had the chance to open the car doors, you might be greeted by a few messy treasures left behind by two young children (any maybe one particular adult). But let me explain how this kind act of service continues to burn strong. Without fail, each time I’ve gotten in that car, despite any current physical appearance, the sweet smells of vanilla have greeted me, and like an emotional reaction the divine service of these good people wraps around me and I can hear again the words in the service performed, “We love you Ammon, we pray for you Ammon, you inspired us Ammon…”

Shortly after Ammon was diagnosed, Summer was at the hospital with Ammon and I was at home cleaning and keeping the house in marginal order before heading there as well. A knock came at the door and I was greeted by one of our neighbors. She had learned from Summer the day before about Ammon’s diagnosis and had been broken hearted ever since. With emotion in her voice she simply said, “I’m not sure exactly how to say this, but I need your laundry.” In her hands she was holding two empty laundry baskets. I was touched immediately by her thoughtful service on Ammon’s behalf, and I’ll never forget her words and the inspired charity it conveyed. Unfortunately, I had just finished the last load of laundry, except for a load of whites that included all of our unmentionables and I wasn’t ready to hand those over (although, since that day our ‘unmentionables’ have been folded and put away through another kind act of service). After talking for a while, our friend left empty handed, or at least with empty laundry baskets. But she needs to know that the inspiration behind the mission was accomplished, and it really had nothing to do with laundry. No, that day, even that specific hour, the real inspired service was to let a Dad know that his son was loved and being prayed for, that heavenly and earthly forces of good were marshaling on Ammon’s behalf and there were yet many miracles to come. Who would have ever thought that the phrase “I need your laundry” would convey such a divinely comforting message.

Thank you again to everyone! Our hearts have been overflowing with the charity and love that we and Ammon have witnessed.

Smile!!!

I decided that in between projects at work I needed to take a quick lunch break with Ammon and Summer at the hospital. I’m glad I made that decision. Upon arriving in Ammon’s room he was in the middle of a respiratory treatment. He heard my voice and looked right at me. At one point while singing him songs, rubbing his arm, and holding his hand, Ammon must have thought I was doing something funny because he started to give us a little smile. This only encouraged us even more, and the silly songs became more jubilant, the hand motions became more excited, and the smiles got bigger and kept coming. Summer snapped the picture below on her phone. This is the first time in about a month and half that we have been blessed with a smile from Ammon. Ammon’s doctors and nurses were just as excited as us to see him smile, and the word was spreading quickly. You know sometimes how you’re not sure exactly what you should be praying for in the morning, like something specific as opposed to something more general. I know tonight and tomorrow morning we are going to be praying for more smiles from Ammon, a whole lot more smiles. Big happy miracle smiles!

8 hours

Today has been one of the best days for Ammon. He was awake and looking around without crying, whining, or moving uncomfortably around, for about 8 hours. Until today I think the longest he had gone being awake and not crying was one or two hours. I started putting him in his wheelchair last week, a couple times a day to be able to sit him up and help open his lungs. He would wince and cry in pain just from me picking him up. He would move his head around and cry and I would rub his head until he would settle down and fall asleep like he just couldn't handle it. I would count down the minutes until he had been there enough to cough out some junk and then lay him down. That is the extent of our "exercise". Today I held him while we were changing his bedding. I hadn't held him for a while and last time I did I slowly watched his respiratory rate decrease until medical intervention had to take over. The time before he never stopped crying. Today he sat there with me, and just looked at me with those wonderful steel eyes and long eyelashes.

I went to the temple yesterday. I had been frustrated. One morning I came in to see blood all over Ammon's mouth and lips along with dried fluid that had leaked out of his g-tube. Another day I came in to find his respiratory status had changed from the cpap back to extremely high bipap, when he had worked the whole day to ween down. I had asked the in-charge nurse to please give him a nurse that he has already had..we've had many..to take care of him through the night while I went home to get much needed rest..to then find out it didn't happen. I started overlooking all the blessings and neglecting the immense gratitude. The temple filled me with peace and love from our Savior, and reminded me of all the miracles and good that is occurring daily.

Today was a good day. There were many who continue to fast with us. Our family was together at the hospital to talk to Ammon. He's getting better. They have to push back his chemo treatments again because of his blood count status, but the good is out weighing the bad, and that's all we can ask for right now. His coloring is better..not pale as a ghost, or red from a reaction, just nice and peachy. The things we added today were ear drops, his ear was draining and probably has an ear infection, and normal formula again. It's like starting the whole week over again, except this time I am going to be grateful and Ammon is a little more stronger and rested.

Cookies and Ammon...

Summer's description of a roller coaster couldn't be more accurate. Ammon has been doing well today, but it seems to come with its costs. Ammon appeared to have an okay night last night, but he also had alot of blood around his mouth and potentially in his throat and stomach on Friday morning. The bleeding is primarily caused by the respiratory treatments that he is required to endure, without which his breathing would become worse. However, throughout the day on Friday everyone ensured that the tubes were all extra lubricated and large amounts of saline were used whenever the suction tubes were inserted. He didn't appear to bleed again significantly throughout the day and actually had a good day. His lung xrays show that the secretions and liquids are starting to reduce again, which is great news. Beyond the chemo treatments, it seems like the largest item to deal with currently is the respiratory issues, so this progress appears good and we just need to help Ammon stay on top of it. The cpap machine appears to being its job well, and Ammon is tolerating the mask much better than he has in the past.

On the flip side, Ammon was moved back into isolation this evening due to very low counts again. This is just how fighting cancer goes. In some regards it doesn't necessarily seem like a complete setback. In isolation Ammon receives a little more attention. Specifically, even though he is improving in other areas to such a point that occassionaly his 24 hour nurses were sometimes assigned to two patients over the past couple days, when he is in isolation they are only assigned to him because they can't be moving from a "sick" room to an isolation room repeatedly.

We were talking with one of the oncologists earlier today and she indicated that Ammon's detailed cancer cell analysis from the bone marrow aspirate came back at .004, which is below the .01 the oncologists were willing to accept. This is great news. I asked her if Ammon needed the results to drop to absolute zero in order for the cancer to be beaten, or if even one bad cell would cause a reoccurence. I learned two things from her response. First, even with the detailed lab testwork, if the results came back as absolute zero cancerous cells identified it potentially only reflects an inability in the technologies to detect the cancerous cells perfectly. One, or two, or a few could still be hiding out somewhere, and the technologies and analysis are simply unable to detect it. This is partly why the treatment process is as long and as intensive as it is, even when so few cancer cells are being identified after the induction phase. This gets to the second thing I learned. If there is only one of a few cancer cells left, it depends on the type of cancer cell it is. For lack of a more technical, and probably accurate way to describe it, there are apparently master cancer cells and then all of the offspring they produce. If you kill off all the master cancer cells that's good, because the offspring will die off eventually as well. But even if you successfully kill off all the offspring cancer cells and the majority of the master cancer cells, if there are even just a few master cells remaining they can go into remisssion and wait to fight another day, or another year even. That's why even though you think you've got them all, you still follow the chemo and treatment regimen for three years. I've likely slaughtered the technical way of describing this, and any oncologist reading this is shaking their head, but it made sense to me.

Ammon has had a good Friday evening and has been sleeping well. We are hopeful for rest filled night.

Another fun story. We decided to bring in cookies from a cookie store located at the Gateway. These particular cookies are heaven on earth, melt in your mouth, wonderful. We brought them in on Thursday for all of Ammon's nurses, doctors, and other professionals, and they were a hit. Apparently, in the middle of Friday morning rounds one of the doctors was talking about the delectable cookie she savored from the night before, and the other doctors had to get her refocused on the medical plan for the day. However, once they were done with the medical plan the doctor said, "Now let's get back to that cookie..." Considering the cookie success, the only humane thing to do was to bring in twice as many cookies on Friday and spread the joy. In both instances we wrote a note that essentially thanked the nurses and doctors for everything they are doing and then signed it "Love, Ammon". Whenever someone would look at Summer or I to say thank you for the cookie, we would promptly say, "Oh no, these are from Ammon." At which point, they would enthusiastically thank Ammon and go on and on about how good the cookies were. For some, knowing that the cookies were from Ammon was reason enough to throw calorie conscious caution to the wind and committed diets out the door. I think Ammon has created a new tradition here, that just might need to continue (did I mention I really love these cookies too). Maybe our slogan can be: Changing the PICU, one heavenly cookie at a time!

Turning Point...

It’s been a little over a week since I was quarantined from Ammon, and finally tonight, I get to join him for another night back on the frontlines at the PICU. As you can see from the posts below, it’s been a muddy week in the trenches. Ammon’s been bogged down, but he has also been surviving. If Summer hasn’t already done it in the interim, I’ll be sure to post an update sometime tonight on Ammon’s condition for the past day.

I’ve mentioned before that many times sitting next to Ammon’s bed, he has the effect of inspiring and strengthening those around him, even in the midst of a particularly sore fight. As Ammon’s conditions continue to be “tricky,” I have been amazed at the medical miracles that have manifest themselves. Some of these miracles occurred long ago and we are still the recipients of them all these years later, through various medications and procedures. While others are happening right before us. I can see it when the doctors and nurses say “let’s try this…”, and then proceed with the thought (we should show you a picture of one of the contraptions a nurse put together to help relieve abdominal pressure through his G-tube). Sure, part of the time it is just guesswork (Ammon likes to keep us on our toes that way), but other times the “let’s try this…” is a flash of inspiration. That inspiration is a result of your faith and prayers. I hope it’s reassuring for each of you to know that through your prayers you have been part of miracles.

A while ago I had the opportunity to share a little bit about miracles. In thinking about that it reminded me of one of my favorite new shows on TV. It’s called Turning Point, and it’s actually on BYUTV (to my nephews, please don’t be turned off by the BYU part, trust me, you won’t see Cosmo or Jimmer in any of the Turning Point episodes…at least, not yet). The first episode is my favorite so far, and it talks about a technology called Eagle Eyes. The show is inspiring, and if you’re interested please click here and enjoy, or at least make a note of the web address. We actually bumped into two of the children from the show, Elizabeth and Ty, at an event a while ago. It was awesome to meet their parents and to introduce ourselves to Elizabeth and Ty, express our appreciation for them, and then introduce them to Ammon. Following is a part of what I shared a while ago, and it continues to remind me of Ammon and the miracles meant to come about throughout this cancer process:

“Sometimes we are performing miracles without even knowing it. Through persistent work, and a measure of divine inspiration, scientists discover miracle technologies, doctors discover miracle cures. I love the story of Professor Jim Gips. Professor Gips is a computer science professor at Boston College, and one day a thought occurred to him about how cool it would be to control a computer simply by moving your eyes. After inventing the technology it was featured on a Discovery show and a mother with a non-verbal, non-communicative son with severe cerebral palsy saw the show. She pestered Professor Gips and repeatedly asked him to allow her son to try the technology. Professor Gips repeatedly turned her down saying that was not why the technology was invented, it wasn’t even a thought of his that it could be successfully used by such an individual. Eventually, he reluctantly relented and the mother brought her son to try the technology. The instant the son tried Eagle Eyes, as it is called, Professor Gips had one of those moments, he knew that this is what it had been invented for, he knew that this previously non-verbal young man had great intelligence. With this technology, the young man completed high school, made numerous friends, and effectively changed the outlook of his life, his mother’s and an entire community. He that couldn’t talk, could now speak. Now there are dozens of children that previously had no means of connecting with another, that are now expressing the simple fact that there is a child of God inside, that there is an individual with intelligence. Professor Gips, a computer science professor and a self-admitted individual that previously avoided and had no contact with individuals with extreme disabilities, also had a miracle occur in his life. He expressed the following, “My attitude towards the children with the disabilities....my initial attitude was, boy I'm glad that those are not my children, thank God that those are not my children, to those could be my children, to they are my children, to they are me, if that makes sense.” With a gospel perspective, from one child of God to another, it makes perfect sense.”

It's a roller coaster

We are traveling up and down and my favorite, upside down. I really had fun this summer taking Coleson to Lagoon and gaining a new roller coaster buddy, he even went on the Wicked with me. There is something about speed and going upside down that I still love.

Well the only thing that Ammon seems to be maintaining is our tricky status. His respiratory system was going up and down with his lung collapsing and opening. We started giving him DNase to thin out the mucus, which really helped today. He got a lot of junk out. His chest xray looked a lot better today, so we started to turn down his flow rate, but he didn't last long before he needed it turned back up. He was pretty mellow yesterday and last night, catching up on his sleep from the all nighter the night before. I was thinking this is nice, he's out of pain, resting, building up his reserves, but as the day progressed I started thinking he is looking really pale. Then during a CPT(respiratory, suctioning treatment) he wasn't crying and usually he cries towards the end. I mentioned this to the nurse and she checked his temp. Yep, he had a fever. So a phlebotomist came to to do a blood sample. It came back with very low hematocrit, and he needed a blood transfusion. Platelets were low again, so he needed a platelet transfusion. Oh, and our lipase is extremely high again, which usually says pancreatitis, but I thought we were done with that. His glucose levels are fine so we might have a pancreatic cyst or blockage. Well we did an x-ray yesterday to look at his bowels in case there was blockage and the xray looked fine. I guess I didn't explain to Ammon that you always say treat when asked trick or treat. He picked the trick and the doctors are starting to look at me and say we really don't know what is going on. We didn't stand in line or pay for this ride!

I learned from a psychology class years ago (did I really graduate college 10 years ago?) that you can go through the grief cycle for any traumatic thing in your life, not just a death. So I would say I am in the frustrated/angry part, not so much angry but just frustrated that one thing gets fixed, another falls apart. On a good day when he is finally not crying for a few hours, someone will ask if this is his norm now. "No," I reply, "he is a happy boy usually." He usually has a very high pain tolerance, yes he has been on pain for months now, but that is not usual. I brought in a picture of Ammon from Brian's office wall to show them a smiling Ammon. Yes, he's had days where we feel like he is getting better, yes, there are days at home when he doesn't smile and we would be fine taking him home without a smile, but until he smiles at least one time per day (or even one time again), I am not saying he is back to normal.

He's been here in the PICU three weeks now. The doctors and nurses here are amazing, and several of them are even better than amazing. Some have really grown to love Ammon, some even from the first moment they met him, and for those he's becoming more than just another patient. But even these new friends don't want to see Ammon again tomorrow or next week, at least not in here. We continue to pray for more physical strength and healing for Ammon, we continue to hope he can return home soon. Thank you again everyone for your love, service, prayers, and faith on Ammon's behalf, they have been realized, because without them Ammon's journey so far would have been even more difficult.

Happy Halloween

Brynn and Coleson had a great Halloween! Coleson didn't have school so he and Brynn came to the hospital in the morning to visit Ammon. Ammon was having a pretty good day just chillin', not experiencing too many problems. They had a carnival going on the third floor, so Coleson and Brynn got to have some sweets and their first taste of trick or treating for the year. The night before, I was home, putting Coleson to bed and he said he didn't know if he could go to sleep because he was so excited, it was like Christmas Eve excitement. Next the kids got to go to Brian's work to trick or treat in his office, Coleson had to make sure every single desk and stash of candy was hit. It was really funny when Coleson loudly declared that he needed "to go to find Daddy's boss" because he always has the jumbo size candy bars, only to learn that while declaring this Brian's boss, Kim, was standing right behind Coleson. Not one to feel embarrassed or shy, Coleson, Brynn, and Kim quickly marched down to Kim's office where he did not disappoint in the treat department. It was alot of fun for everyone to be with Brian's friends and coworkers. Then they went to their cousins house for the night party and serious trick or treating. Brynn diligently kept up with the big boys for the first dozen homes, and then it was mainly Brian carrying her from there. They all had a blast! The boys all weighed their candy and Coleson came out on top with a proud 7.2 pounds. At the end of the night, Brynn fell asleep in Aunt Brooke's arms and we had to drag Coleson to the car. It was so nice I got to see them on my one hour mandatory "break" from the hospital (I feel like a working Mom).



Coleson didn't want to be something he had to explain, but he was creatively an alien who took over an astronaut to sneak down to invade earth.



Ammon was a pirate, with an eye patch to boot! His fish wanted to try out his costume too.






Brynn was Goldilocks and got to wear her favorite shoes that are shiny white that click like high heels when she walks. I think they might be a little small, but no way was she going to take them off. Brynn loved her Uncle Kevin's costume who was dressed up as Woody! All night trick or treating, she would yell for Woody and then they'd try to tickle each other.

Thank you again to everyone for making this a great Halloween for our kids. Your love and support are so much appreciated by the kids, and even moreso by us.

A Worthy Name...

One of Ammon’s doctors asked me recently where we came up with his name, he’d never heard of it before. It was a name that was clearly different from something common like Summer or Brian, and after several visits with Ammon it’s source had sufficiently peaked his interest. Well, just like everything else it seems, there is a story there, a story hidden behind the name. In some experiences, such as this one, it was clearly inadequate to simply reference the source of the name without also sharing the ‘why’. Some of you that are new to Ammon’s life experiences might not know all the key miracles that started even before Ammon was born, and have continued with him through to today. Maybe in some other posts we should share a few of these, because in some regards they also help us to understand better the why behind several of Ammon’s life experiences.

I relayed the following background to the doctor asking about Ammon’s name. Ammon was born suddenly, and under extreme circumstances. That’s really the more pleasant way of saying that he almost died. And without the presence of miracles, and people willing to act upon those miracles, we wouldn’t have been blessed with Ammon for these six years now. Ammon prevailed through many difficult health challenges, and after a little over two months in the NICU, and almost double his birth weight of 2 pounds 10 ounces, we were able to bring him home, and we couldn’t have been happier. In the first week of Ammon’s life we felt and saw the strength, faith, and joy that Ammon created, both physically and spiritually, just by being near him. We didn’t have any strong or lasting feelings of grief or disappointment, even under the difficult circumstances Ammon was experiencing, just because we were so grateful to have him with us, and because Ammon’s strong spirit always pushed those feelings out. Since we were surprised by Ammon’s early birth, we were also unprepared with any potential names (we thought we had a good two months to still think about names). As we pondered on this more and more, it became clear to us that Ammon’s name would need to be representative of the strength and faith that he shared with us. It wasn’t so much finding a name or an individual that Ammon was worthy to be named after, but that the name or individual was representative and worthy of Ammon.

I told the doctor that Ammon was named after a man of unmatched strength and honor, a religious leader that lived a long-time ago, that was full of faith, service, and kindness, to such a degree that he became a loved leader that inspired thousands of hardened people to become the most charitable and faithful people of their time. Ammon’s namesake, in every way, embodied the strength and joy that we felt and saw in being near Ammon. The doctor remarked that it sounded like Ammon had been well named.

A couple of days later the same doctor was talking with Summer and told her that he had asked me about Ammon’s name and what I had responded. Based on my response, and having come to know our young son over the past few weeks, he apparently wanted to learn even more about Ammon’s namesake. So he did an internet search, ended up at lds.org, and proceeded to learn about the original Ammon from long ago and the influence that Ammon had on the people he served. He then remarked to Summer that based on what he had learned about the Ammon from long ago, and his strength, service, and kindness, it was clear to him how our Ammon received his name. We tend to agree. It truly is a worthy name for such an individual.

Simply Believing

I guess we were a little to anxious with getting out of the PICU. We were going to move floors today up to the cancer floor, and we tried not to talk about it, or get too excited about it, or think we were finally done being in critical condition. Last night Ammon woke up around 9 after he had slept for several hours and decided to not breathe so well. He still has a lot of secretions in his lungs that we are trying to get him to cough out. He started crying more like he was in pain and would stop to listen to me trying to sing and comfort him. He also started tracking with his eyes those nurses and respiratory therapists who were approaching him to perform procedures and cry out ("I know you...you don't make me feel good"), so these were good signs that he was more aware...of pain and surroundings as well. His respiratory rate started climbing and the resident was called in again to assess him. The respiratory therapist was called in to suction him again and that seemed to help with his oxygen sats. We then decided he was having withdrawal issues from the multiple meds that he had been weened off over the last 24 hrs.

Ammon and I had a countdown till midnight, because at midnight he would officially be done with the steriod treatments related to his chemo. Ironically, at midnight he was given morphine and he was out. I was joking about the countdown at midnight with Ammon's nurse and so when the morphine was given at exactly that time, I think she started looking at me funny. After ten minutes of staring at him to make sure he was really asleep and not in pain, it was time for a celebration in having made it successfully past the steriod phase of his treatments. A Sprite/Crystal Light slushy actually sounded good. I walked over to the slushy machine they have here in the PICU and they had just started new batch, so it's was just sugar water, so much for the midnight celebration.

The only down side of coming out of the isolation room is that we could hear everyone else all night long, in addition to our own alarms and beeps. At least we got some sleep. We seemed to be doing better this morning, the talk in rounds was don't give him any more morphine and get him up to the cancer floor. I went to church here this morning. It's so nice to be at Primary Children's Hospital, they have a half an hour church service in a small auditorium. You come in whatever clothes you have, the sacrament is administered, and a beautiful musical number is performed. Then you have one talk that makes everyone cry. With foresight, they hand out tissues when you come in. At first I thought, do the speakers pick the sensitive subjects to make everyone cry, they know we are all going through tough times. I guess they are just trying to comfort us. I did get touched by a quote that was read by Elder Holland (Oct. 2008). It reminded me of my conference experience and Brian's most recent talk on miracles. He said, "I ask everyone within the sound of my voice to take heart, be filled with faith, and remember the Lord has said He 'would fight (our) battles, (our) children’s battles, and (the battles of our) children’s children.' And what do we do to merit such a defense? We are to 'search diligently, pray always, and be believing. (Then) all things shall work together for (our) good, if (we) walk uprightly and remember the covenant wherewith (we) have covenanted.' The latter days are not a time to fear and tremble. They are a time to be believing..."

What a wonderful promise for simply believing. I won't doubt Ammon!

This afternoon, Ammon just kind of stopped breathing so well and the whole team of doctors started swarming and put him on high flow oxygen, he was mottling blue and grey, his IV wasn't working right, he hasn't gone pee for several hours, everything is just going the wrong way again. A chest x-ray was done and his left lung was collapsing, so he is now back on the bipap, back on IVs, back on lasyx for peeing. His seizures and crying have gone down. Blood count is still great and he is off the steroids!!!!! So don't even mention moving to the fourth floor...yet. Just keep believing.

A stellar performance

Brian is banned from blogging for a few days while he gets over a bad sinus infection. Which also means he is banned from going to see or help with Ammon. He has been amazing with this hospital stay. He deserves the same credit that he gives me with balancing work, church calling, family life, and Ammon, he loves his little boy. I am the lucky one. So yesterday Ammon again made good progress. The doctors said he needed to have a stellar performance to stay off the bipap and he did. I wasn't sure if he could do it, but I wanted to have faith and confidence. At the end of the day I thought, why did I doubt, of course he could do it. I have just loved our new saying, Be Brave like Ammon. My sister in law made awesome pins with that saying on it. It's our badge of courage. Please click here to see the badge.

Thursday night/ Friday morning was my turn to go home and help with Coleson's class Halloween party. Brian realized through out the night that he was getting sick, too sick to be there, so my brother hurried over to the hospital to be with Ammon until I got there. He stood in the morning circle to get all the doctor reports and he said the only thing he understood was diarrhea, that cheered Brian up. I still don't understand why boys find humor in potty talk. Ammon had another bone marrow aspirate, so we should get results tomorrow. He slept well while they slowly weened him from his sedative, narcotic and iv fluids. He resumed normal formula and they are really hoping he can go back on the ketogenic diet in the future, especially since his seizure frequency has increased. He was moved out of isolation to a new room because he is no longer neutropenic, he is making enough while blood cells to get by. He did need another platelet transfusion. He did have a stellar performing day.

However, last night he started being agitated again and has been whining and tossing around since midnight, the last 12 hours. As a mom it is frustrating and saddening when you can't console your child. I sing, talk, rock, give morphine :), and nothing seems to help. We are just hoping it is the steroid as Brian explained a few days ago. We've worried about stomach pains with not having formula for two weeks and then making his stomach and pancreas work again, but the nurse is confident the morphine or adivan would have knocked that pain. I guess I will just start counting down to midnight... I might be having my own new year's type celebration tonight... I hear they have a disco light/bubble machine, that and the fish tank channel, oh and the slushy machine, Ammon and I are set.

Ammon has fallen asleep. Pray for a much needed night's rest. Thank you again everyone.